IIH Introduction Booklet

I am not a doctor. I am a person who when diagnosed with IIH, was shocked at how disjoined and hard to find the information was. There was no easy way to find out what was happening to me, and what might help ease my pain. So once I started feeling better I decided I’d be the person to compile that book. Most of the information here has been collected from medical websites, support pages, and learned from my own journey. Sources can be found at the end.

CHAPTER ONE

What is Idiopathic Intracranial Hypertension?

Idiopathic intracranial hypertension (IIH) is a disorder related to high pressure in the brain. It causes signs and symptoms of a brain tumor, like vision changes and headaches. It is also sometimes called pseudotumor cerebri or benign intracranial hypertension. “Idiopathic” means the cause isn’t known, “intracranial” means in the skull, and “hypertension” means high pressure.

The fluid that surrounds the spinal cord and brain is called cerebrospinal fluid or CSF. If too much fluid is made or not enough is re-absorbed, the CSF can build up. This can cause symptoms like those of a brain tumor. It puts extra pressure on your brain and on the nerve in the back of your eye, called the optic nerve. It also often causes pulsatile tinnitus, where you regularly hear a sound with a steady beat that seems in sync with your pulse.

Cerebrospinal fluid flows from the choroid plexus through the brain’s four, interconnecting ventricles before finally entering the sub-arachnoid space, which surrounds the brain and spinal cord. The fluid then flows over the brain and spinal cord and is eventually absorbed into the venous blood system through tiny, one-way channels called arachnoid granulations or villi.

When this continuous cycle of CSF production, circulation and absorption functions normally, it regulates the volume of CSF in the skull and the fluid pressure remains at a constant level. In other words, the CSF production rate remains equal to the CSF absorption rate.

What causes idiopathic intracranial hypertension?

Experts don't know why IIH occurs. Some medicines and conditions have been linked to a higher risk of it. These include common medicines and conditions like:

Birth control pills
Certain antibiotics
Chemotherapy drugs
Steroids
Some acne medicines
Obstructive sleep apnea (https://www.youtube.com/watch?v=tnnybCnFdHE)
Hypervitaminosis A
Change in thyroid hormones
Brain injuries or concussions
Chronic kidney disease
Take growth hormones
Tetracycline
Recently stopped taking steroids
Addison’s disease
Cushing’s disease
Iron deficiency anemia
Lupus
Lyme disease
Mononucleosis
Polycystic ovary disease

There’s no consensus as to whether these actually cause IIH or not, and there’s no consensus as to whether treatment with these should stop once IIH is confirmed. It looks like, for example, removing birth control doesn’t reverse IIH.

Secondary intracranial hypertension means that something–trauma, an underlying disease or malady, an adverse drug reaction–has triggered the intracranial hypertension. In these cases, weight is not a factor.

The relationship between weight and idiopathic intracranial hypertension is one that needs to be explored. Weight is considered a factor for young, overweight women diagnosed with spontaneously-evolving, idiopathic IH (IIH). It is worth noting that approximately two-thirds of the U.S. population is now deemed overweight, but only a fraction will develop idiopathic IH. So, clearly, other factors beyond weight are an issue in cases of idiopathic IH. Doctor’s shouldn’t just tell patients to lose weight without also prescribing diamox or topamax and referring them to a hospital approved weight loss clinic and/or dietitian (nutritionist not a protected term, anyone can call themselves a nutritionist) for assistance.

There can also be IIH with a stenosis (a partially collapsed vein) or IIH without a stenosis (a problem of overproduction). Depending on the severity of the stenosis, medications may only help so much and a stent may be needed. Also, weight loss may help more if the issue is an overproduction problem, but if the problem is a collapsed vein, weight loss doesn’t repair the damage. If weight loss and medication don’t help the overproduction issue, a shunt may help.

What are the symptoms of idiopathic intracranial hypertension?

The symptoms of IIH mimic those of a true brain tumor. The main sign is unusually high pressure inside the skull. This is known as intracranial hypertension.

While severe headache is often the hallmark and the most common presenting symptom of intracranial hypertension, it doesn’t have to be. There are documented IH cases in which headache never occurs. In its absence, other symptoms including visual changes, papilledema (swollen optic nerves), pulsatile tinnitus, and neck and back pain can point to raised intracranial pressure.

You can have intracranial hypertension without papilledema. Just as some people don’t develop headaches, some never develop papilledema. Additionally, a patient’s papilledema can resolve but he or she may still experience headache, tinnitus or other symptoms of IH.

Every patient is different. Vision loss is not necessarily permanent. As annoying as those visual fields are, they really are important because early vision loss is not always noticed by the patient. The general rule is the sooner any loss is detected, the better.

Other symptoms include:

Changes in eyesight such as blurry vision or double vision
Vision loss, especially in the peripheral vision
Dilated pupils
Feeling dizzy or nauseated
Vertigo
Vomiting
Neck stiffness
Trouble with balance or walking
Frequent headaches, often along with nausea or vomiting
Persistent ringing in the ears (tinnitus)
Intracranial whooshing noise (pulse synchronous tinnitus)
Back and arm muscle pain
Exercise intolerance
Pain bending over
Forgetfulness
Depression

These symptoms may look like other health problems. Always see your healthcare provider for a diagnosis. You may need referrals and persistence.

Who is at risk for idiopathic intracranial hypertension?

Anyone can develop IIH. But some people are at higher risk for it, such as:

Women of childbearing age (20 to 45 years)
Overweight people (a BMI over 25), or recently gained weight
People who have a thyroid condition or chronic kidney failure

While no genetic basis has yet been established to explain idiopathic intracranial hypertension (IIH), there is reason to believe genetic factors may play a significant role. There are clues including the fact that overweight or obese women who have IIH make up a very small percentage of the total number of overweight or obese women in the general population. A possible high incidence of uterine/menstrual dysfunction and polycystic ovarian syndrome (PCOS) and possibly a higher prevalence of genetic thrombophilia in this population are also potentially significant.

How is idiopathic intracranial hypertension diagnosed?

A physical exam and a few tests can help identify IIH. Diagnosis involves ruling out other health problems, including a brain tumor. You may need these tests:

Brain imaging such as MRI with contrast, CT with contrast, and MRV. The MRV is most important.

Magnetic resonance imaging (MRI) is a medical imaging technique that uses a magnetic field and computer-generated radio waves to create detailed images of the organs and tissues in your body. Most MRI machines are large, tube-shaped magnets. When you lie inside an MRI machine, the magnetic field temporarily realigns water molecules in your body. Radio waves cause these aligned atoms to produce faint signals, which are used to create cross-sectional MRI images — like slices in a loaf of bread.The MRI machine can also produce 3D images that can be viewed from different angles. This should fail to show a mass or other sign of symptoms, and may show the narrowing of certain areas of the brain caused by the pressure of the CSF.
Magnetic Resonance Venography (MRV) A specific type of MRI that examines the veins without the overlying tissues being visible. Typically, this exam will require an injection of a contrast material to enhance the visibility of the veins. An MR venogram should exclude the possibility of any barriers to blood flow in the veins or cerebral venous sinus thrombosis (a rare form of stroke).
A CT uses x-ray based images compared to MRI’s radio wave based imaging. Both MRIs and CT scans can view internal body structures. However, a CT scan is faster, cheaper and can provide pictures of tissues, organs, and skeletal structure - though is likely to miss many of the defining features of IIH, it can rule out tumor or other illness. An MRI is highly adept at capturing images that help doctors determine if there are abnormal tissues within the body. MRIs are more detailed in their images and the preferred diagnostic tool.

Spinal tap (lumbar puncture) to withdraw a sample of fluid from around the spine for testing pressure, any result higher than 20 cmH20 is considered high

It’s quite possible to have a normal or even low opening pressure and still have intracranial hypertension.There are a variety of factors that influence opening pressure. First, it’s believed that spinal fluid pressure normally fluctuates, which may explain why sometimes an individual can suffer with a severe headache, feel suddenly better, then feel worse again. Duration between spinal taps, a cerebrospinal fluid leak from an earlier spinal tap, the body’s position and medication can all affect opening pressure.

CSF has several important functions. It cushions the brain within the skull, transports nutrients to brain tissue and carries waste away. CSF is produced at a site within the brain called the choroid plexus, which generates about 400-500 ml. (one pint) of the fluid each day or approximately 0.3 cc per minute(20 cc/hr). The total volume of CSF in the skull at any given time is around 140 ml. The fast rate of production and accumulation explains why patients with IIH typically only get a few hours of relief after a ‘therapeutic’ large volume tap. The normal range for CSF opening pressure is reported differently in various sources, with most reporting a normal range of 7-18 cmH2O in adults,1 though some consider the normal range 5-25 cmH2O.2 However, a pressure >25 cmH2O represent increased intracranial pressure, and <5 cmH2O should certainly prompt you to look for a source.

During the procedure you may lie on your side, with your knees pulled up toward your chest and your chin tucked downward. Sometimes the health care practitioner will have you seated but bent over. You will need to be repositioned once the needle is in place to ensure accurate measurement of the fluid pressure. If the procedure is done using a fluoroscope for visual guidance, you will be on your stomach.
After your back is cleaned with an antiseptic solution, the practitioner will inject a local numbing medicine (anesthetic) into your lower spine.
When the area is numb, the practitioner inserts the spinal needle, usually into the lower back area.
Once the needle is properly positioned, the practitioner measures the pressure of your CSF. If the pressure is high, CSF may be drained until a normal pressure is recorded. The CSF is also sent for laboratory analysis.
The practitioner removes the needle, cleans the area and bandages the needle site. You will be asked to lie down for a short time after the test.
The entire procedure usually takes about 30 to 60 minutes, but may take longer. Holding the proper position may be uncomfortable, but it is extremely important to stay still to avoid moving the needle so the doctor can get an accurate measurement of your CSF pressure.

Sometimes after a lumbar puncture some CSF leaks out of the area, resulting in a headache. It is routine to have patients lie down for 30-60 minutes after the procedure, however, studies have shown no difference in the prevalence of headaches with rest periods after a lumbar puncture.

The typical post lumbar puncture headache goes away after you lie down for five to 15 minutes, and gets worse while you are standing or sitting. For most people, the headache resolves within one to three days. Newer lumbar puncture needles are smaller, which reduces the risk of headache.
Pain relievers such as acetaminophen or ibuprofen can help you manage symptoms, and some people find drinking caffeinated fluids like tea or coffee helpful.
If the headache is severe or doesn't improve with time, contact your physician. If you have a fever, stiff neck, nausea or vomiting you should contact your physician and go to the emergency room right away.
Epidural Blood Patch: In most cases, a CSF leak will seal itself and the headache will resolve. But in about 3 out of 10 people undergoing a lumbar puncture, the CSF continues to leak and cause debilitating headaches.If this happens, the best treatment is an epidural blood patch, which involves a doctor injecting about 10 to 20 ml of your own blood into the spinal area to seal the leak. It may take about 24 to 48 hours to schedule this procedure, so those who cannot tolerate any delay may need to go to the emergency room to have an epidural blood patch done.

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Exam to test vision and check the back of your eye for nerve swelling. The optic nerve is a bundle of fibers that transmits visual information between the retina and the brain. The area where the optic nerve enters the back of the eyeball is known as the optic disc.The brain and optic nerve are surrounded by cerebrospinal fluid (CSF), which helps to keep them stable and protected from damage from sudden movements.Papilledema occurs when increased pressure from the brain and cerebrospinal fluid is placed on the optic nerve. This causes the nerve to swell as it enters the eyeball at the optic disc and is often visible to routine exams.
Optic disc drusen (also known as pseudopapilledema and optic nerve head drusen) represent apparent optic disc swelling that simulates some features of papilledema but is secondary to an underlying, usually benign, process. Most patients with pseudopapilledema lack visual symptoms, not unlike patients with true papilledema. In pseudopapilledema, no obscuration of the peripapillary vessels by the nerve fiber layer edema occurs. Pseudopapilledema may be unilateral or bilateral, but almost all cases of papilledema are bilateral. An extensive workup is usually unnecessary, and an experienced general ophthalmologist or neuro-ophthalmologist can correctly diagnose pseudopapilledema via an ophthalmoscopic examination.

How is idiopathic intracranial hypertension treated?

Treatment can vary based on what is causing the fluid to build up inside the skull, or based on how the patient reacts to treatments. Treatment options include:

Losing weight, if needed (5 to 10 percent body weight recommended)
Limiting salt and vitamin A in diet
Medication such as water pills (diuretics). These help the body to get rid of extra fluid. (eg: Diamox, Topamax, Methazolamide, Furosemide(Lasix))
Surgically putting a special tube (shunt) in the brain to drain fluid and ease pressure
Surgically placing a stent in a narrowed vein to keep it open if that is found to be source of the issues.
Having a spinal tap done to remove fluid and reduce pressure (not recommended for regular treatment)
Having surgery on the optic nerve to ease pressure and save vision (emergency situation)

The most commonly used of the carbonic anhydrase inhibitors (CAIs) is acetazolamide (Diamox). A large multicenter, randomized, controlled trial published in 2014 demonstrated that acetazolamide combined with dietary weight loss resulted in improved visual field function, nerve swelling, and quality of life measures, compared to the treatment of dietary changes alone. Carbonic anhydrase inhibitors inhibit the enzyme system needed to produce CSF and control the pressure (by controlling the volume) to some degree. These drugs do not work in all cases and can have potentially serious side effects. Acetazolamide should be avoided in early (1st trimester) pregnancy, and should be used with caution in later stages of pregnancy. Avoid exposure to sunlight or in tanning beds. Diamox can make you sunburn more easily. Wear protective clothing and use sunscreen (SPF 30 or higher) when you are outdoors.

There can be some unpleasant side effects to Diamox, pins and needles, nausea, diarrhea, fatigue, and more. The side effects vary from person to person from mild to severe and it's up to you whether you want to push through the side effects or try a different treatment option. The side effects do tend to decrease over time, and it helps to start with a low dose, acclimatize to that, and then slowly increase. It can take months for the side effects to dwindle, but they are the best option for saving your sight. You can limit side effects by spreading your dosage throughout the day, or trying the extended release version of the medication.

Topiramate (Topamax) is another medication used to treat IH. While it has less potent carbonic anhydrase inhibition, it may be helpful in its capacity as a migraine headache medication. It can also encourage weight loss, which is always a goal in IH management. There’s disagreement among doctors over the maximum dosage allowed to give patients. High doses cause mental and cognitive issues which has led to the nickname ‘Dopamax’. Standard approach with topamax is to start with 25mg per day and increase the dose by 25 mg every week thereafter (can even go as slowly as every two weeks if side effects are bothersome). Starting someone on a full strength dose can cause a host of side effects, which is why they usually take 4-8 weeks to work up to the effective dose. Zonisamide is a cousin drug of topamax, and may be gentler and can have fewer side effects compared to topamax. Other potential treatment options include methazolamide and furosemide, however all of the above agents have not been evaluated as thoroughly as acetazolamide and further study is needed to establish their utility. Mixing therapies is a common treatment. Corticosteroids, while used in the past to treat IH, are no longer recommended. They do work well to help abort migraines induced by IIH that do not respond to normal migraine treatment.

If medical treatment fails and vision is at risk, surgical intervention may be necessary. One of three types of surgery may be performed: optic nerve sheath fenestration, neurosurgical shunt surgery, or neurosurgical stent surgery.

Optic nerve fenestration is a procedure in which a small opening is made in the sheath around the optic nerve in an attempt to relieve swelling (papilledema). Optic nerve sheath fenestration has a high rate of success in protecting vision, but usually does not significantly reduce headaches. Implantation of neurosurgical shunts (internal tubes) is used to drain CSF into other areas of the body. These shunts protect vision and reduce headache, but typically have a higher complication rate than optic nerve sheath fenestration. There is also the venous sinus stenting procedure, a new option for treatment whereby the placement of a stent that is installed across the narrowed portion of the affected vein where it expands, allowing blood to drain more freely and relieving fluid pressure in the brain.

Eye Surgery

Vision loss in patients with IIH can come on quickly. Therefore, if your primary symptom is worsening vision, rather than headache or other symptoms, a neuro-ophthalmologist may recommend surgery to reduce the swelling in the optic nerve. This surgery is called optic nerve sheath fenestration (perforation). Sometimes this surgery is done on an emergency basis to protect your eyesight.

What happens during optic nerve sheath fenestration surgery?

Both an ophthalmologist and an anesthesiologist will talk with you before the procedure to ensure you understand everything that will happen. This procedure reduces the risk of blindness, but it does not cure IIH. Therefore, even after optic nerve sheath fenestration, you will need continued follow-up treatment.

The surgery takes place in an operating room. You will be lying on your back on the operating table. When you are completely asleep, the surgeon will prepare your eye so it stays open throughout the procedure. The surgeon then performs a series of procedures to expose the covering (sheath) of the optic nerve. Next, the surgeon will make a series of small incisions to release the pressure on the optic nerve.

What happens after the surgery?

After your surgery, the OR staff will move you to the recovery room. After you are awake, the transport team will move you to a room in the hospital. You will probably not have to spend the night in the hospital. Your surgeon will prescribe an antibiotic to help protect you from an eye infection, and also may prescribe antibiotic-steroid drops, which you will use for the first week. Usually recovery is pain-free and does not require pain medicine. We will schedule you for a follow-up visit one to two weeks after your surgery.

Shunts

In some cases, the most appropriate treatment is placement of a shunt to help drain the extra fluid and reduce its pressure. This procedure consists of implanting a small tube (shunt or catheter) into chambers in your brain called ventricles, or into the spinal fluid space in the lower back. The shunt allows the CSF to drain into your abdomen, where it is absorbed. A valve is attached to the shunt to control how much CSF drains. The shunt:

Helps prevent CSF from building up
Reduces pressure on your brain
Improves your symptoms and reduces the likelihood of vision loss

Shunt operations are also performed when drug therapy has been unsuccessful. Shunts may be used to control papilledema and prevent vision loss, as well as to treat headaches that have been unresponsive to any medication. A neurosurgical shunt is a surgically-implanted catheter that is used to drain CSF into another area of the body such as the abdomen. A shunt lowers intracranial pressure by removing CSF to another site, where it can be absorbed.

Shunts have a checkered history with an initial 50% success rate and alternately, a high revision rate of 50%.The most common problem with shunts is that the catheter becomes blocked and has to be replaced. Shunts are the most common pediatric neurosurgical procedure and the second most common neurosurgical procedure for adults.

What is a shunt?

The shunt moves fluid from one place to another. The system includes:

Two tiny tubes (catheters)
A one-way valve that connects the two tubes

The valve is about the size of a silver dollar from one end to the other, but it is very thin and narrow. The valve allows fluid to move only one way – away from your brain.

Many shunts used today have programmable valves, which means that the valves are externally adjustable. The advantage of a programmable valve is that after surgery, a physician can adjust the valve’s rate of drainage non-invasively, with the use of a magnetized device. Shunts with programmable valves can be affected by magnets used to produce MRIs, and may need to be adjusted after the imaging is completed.

How does a shunt work?

Shunts can be placed in various locations. Your surgeon will talk with you about these options.

Typically, one of the tubes runs from the ventricle in your brain to the valve, with the other tube running from the valve to your abdomen. This is called a ventriculoperitoneal shunt.

Sometimes the first tube may be placed into the lower spine, where CSF also circulates, and the second tube placed in your abdomen. This is called a lumboperitoneal shunt.

The second tube may also end at a blood vessel near the heart or in the space around the lungs, instead of the abdomen.

The shunt system allows extra spinal fluid to drain into an area where it can be safely absorbed by your body. The valve can be adjusted to control the flow of fluid. This keeps fluid from building up, but also ensures the right amount of fluid is still available to protect and cleanse your brain.

What happens during the surgery to implant the shunt?

Before surgery, your neurosurgeon will talk with you about the procedure to be certain you understand everything that will take place. Your anesthesiologist will also talk with you.

The shunt implant surgery takes place in an operating room at the hospital. The procedure takes about 30 minutes. The anesthesiologist will give you medicine so you are completely asleep during the procedure, and will monitor you throughout the procedure.

If you are undergoing a ventriculoperitoneal (VP) shunt placement, the nursing staff will shave a small section of hair on your head. They will also thoroughly wash your head and abdomen with a special soap. This ensures the area is sterile.

When you are asleep, the neurosurgeon will make a small incision in your scalp, and a small hole in your skull and one in the protective covering of the brain. The surgeon will use special imaging equipment, called intra-operative navigation, to see inside your brain and locate the correct place for the shunt. The neurosurgeon will make an additional incision (usually above or behind your ear) to assist with placement of the tubing.

One end of the shunt is placed in the ventricle. The other end is connected to the valve. The second tube is connected to the other end of the valve. This tube is then tunneled just beneath your skin down to the abdomen below your ribs. The tubing is inserted into the abdomen either through a small incision, or with the assistance of a general surgeon using a laparoscope and two tiny incisions.

After placing the shunt and valve, the doctor will cover the incisions with sterile bandages.

After the procedure, the OR team will move you to the recovery room. Once you are awake, the transport team will move you to a room in the hospital. You will stay overnight in the hospital, so we can monitor you during your recovery. Most patients leave the hospital after one or two days.

Will the shunt be visible after surgery?

You will notice a small lump behind your hairline and above your ear where the valve is located. Your hair will grow back in that area, so it will not be noticeable to most people.

Recovering after surgery

Some of your activities will be limited when you first leave the hospital. For example, you should not lift anything heavier than 10 pounds for two to four weeks, and you should not resume driving if you are taking narcotic pain medication. Although the valve is beneath the skin on your head and protected, you should be careful not to bump it.

You should have someone look at your incisions every day. You should call your surgeon’s office if they notice any signs of infection, such as:

Redness and hardness around the incision
Hot to the touch
Green or yellow discharge
Fever
Excessive bleeding
The incision is getting bigger
The incision has a bad smell

During the first few months our clinical scheduler will make several follow-up appointments for you at the clinic. During those visits, we will check the valve and ensure you are recovering well. Your doctor will also check to make sure the spinal fluid is flowing correctly. We use special equipment that allows us to adjust the valve in the clinic – even though it is beneath your skin – to make the flow just right. After the first few months, you will have checkups once a year.

The neurosurgeon also may prescribe physical therapy or an appointment with a rehabilitation specialist if you have any problems with walking, standing or balancing.

Will all of my symptoms go away after surgery?

Inserting a shunt should help reduce headaches, dizziness, and nausea and vomiting. How much you improve will depend on how serious your symptoms were by the time you had surgery. The shunt may also improve symptoms related to your vision.

A reminder: A magnet, like the magnets in an MRI, can affect the valve and possibly change the setting. If you need an MRI, please let the doctor know about your valve. After you have an MRI, you will need to schedule an appointment for us to check your valve setting in the clinic.

Stents

CT scan and MRI studies have shown that many patients with IIH have narrowing of one or both of the transverse sinuses, which are the large cerebral veins inside the skull near the back of the brain. This narrowing, or stenosis, results in back-up of venous blood, causing impaired drainage of cerebrospinal fluid and increased pressure in the head. Some investigators believe that this narrowing of the transverse sinuses is a consequence of IIH, but many believe that sinus stenosis can worsen or actually cause IIH.

Studies have shown that some patients with IIH get better when a stent, or mesh tube, is placed into and expands a narrowed transverse sinus (sinus stenting) if they are not responding to medical treatment and weight loss. The stent is placed into the venous sinus by means of a large catheter that is inserted into the femoral vein, in the groin, then guided into the transverse sinus with Xray guidance.

The complication rate of venous sinus stenting is low, but includes rupture of a vein, which might cause bleeding outside or inside the brain. While cerebral venous sinus stenosis is not a common finding for most people with IH, people who do have stenosis and undergo stenting often experience a significant improvement in the signs and symptoms of intracranial hypertension. Therefore, all patients with unexplained intracranial hypertension should undergo imaging (venography) to rule out the presence of a true stenosis.

There is no “perfect” treatment for chronic IH, especially since every person’s experience is different. While surgery certainly helps some people, it can also lead to repeat operations, which can sometimes produce serious, even life-threatening complications. To make an informed decision, it is always best to discuss both the risks and benefits of any treatment with your physician. Idiopathic Intracranial Hypertension (IIH)

(Figure 1) The illustration shows normal veins draining blood from the brain towards the neck (blue arrows)

Idiopathic Intracranial Hypertension (IIH)

(Figure 2) The illustration shows venous sinus stenosis (red circles). As a result of the narrowed veins, blood flow from the brain to the neck is compromised, leading to build of pressure in the veins (blue arrows) and subsequently increased intracranial pressure and IIH.

Idiopathic Intracranial Hypertension (IIH)

(Figure 3) The venous sinus narrowing has been treated with placement of a stent (circle). After stenting, the blood flow from the brain to the neck is restored (blue arrows), leading to normalized intracranial pressure and improvement of the symptoms of IIH.

Will all of my symptoms go away after surgery?

Inserting a stent should help reduce headaches, dizziness, and nausea and vomiting. The stent may also improve symptoms related to your vision.

The stent should not be effected by MRI or security screening devices.

You may feel a slight bruising sensation at the stent site for 6 months to a year as the stent works and integrates with the blood vessel.

There is currently limited data in the published medical literature to answer the question of what percentage of IIH patients have venous sinus narrowing as the cause. While previously considered experimental, venous sinus stenting is now an accepted treatment for IIH with published data suggesting that it is safe and works well for reducing symptoms.

In a systematic review article that gathered and analyzed published case series of patients undergoing stenting for IIH by Starke and colleges, the author reports:

78% of patients report improvements in headaches after stenting
93% of patients have improvements in ear ringing/whooshing sound in ear after stenting
94% of patients have resolution of papilledema after stenting
87% of patients have improvements in vision after stenting
The author of this book was significantly helped by a stent

Types of Medical Specialists

Neurologist: A neurologist is a medical doctor who specializes in treating diseases of the nervous system. The nervous system is made of two parts: the central and peripheral nervous system. It includes the brain and spinal cord. Neurologists can also have subspecialities that include headache medicine and care, and it may help to find a neurologist with this subspecialty.

Neuro-opthamologist: Neuro-ophthalmology, a subspecialty of both neurology and ophthalmology, is the treatment of visual problems that are related to the nervous system; that is, visual problems that do not come from the eyes themselves. We use almost half of the brain for vision-related activities. Neuro-ophthalmologists undergo specialized training and expertise in problems of the eye, brain, nerves and muscles. These physicians complete at least five years of clinical training after medical school and are usually board-certified in neurology, ophthalmology, or both.

Neuro-ophthalmologists have a specialised skillset to evaluate patients from the neurologic, ophthalmologic, and medical standpoints to diagnose and treat a wide variety of problems.

Neurosurgeon: A neurosurgeon is a physician who specializes in the diagnosis and surgical treatment of disorders of the central and peripheral nervous system including congenital anomalies, trauma, tumors, vascular disorders, infections of the brain or spine, stroke, or degenerative diseases of the spine.

Opthamologist: is a medical doctor who specializes in eye and vision care. Ophthalmologists differ from optometrists and opticians in their levels of training and in what they can diagnose and treat. As a medical doctor who has completed college and at least eight years of additional medical training, an ophthalmologist is licensed to practice medicine and surgery. An ophthalmologist diagnoses and treats all eye diseases, performs eye surgery and prescribes and fits eyeglasses and contact lenses to correct vision problems. Many ophthalmologists are also involved in scientific research on the causes and cures for eye diseases and vision disorders.

Optometrist: Optometrists are healthcare professionals who provide primary vision care ranging from sight testing and correction to the diagnosis, treatment, and management of vision changes. An optometrist is not a medical doctor.

You should see an ophthalmologist along with your neurologist or see a neuro-opthomologist to check on the status of your eyes and make sure pressure isn’t doing damage.

Note: if you feel like your doctor isn't listening to you, isn't taking you seriously, if you don't like them - change doctors.

I changed neurologists 4 times before I found one that agreed that the MRI showed a stenosis, agreed to talk about a stent - and gave me my life back.

Related Medical Issues

Chiari Malformation

A Chiari malformation is a neurological condition in which an area at the back of the brain, known as the cerebellar tonsils, is pushed down beyond the bottom of the skull into the spinal canal. As a result, the tonsils can physically block the circulation of cerebrospinal fluid in the sub-arachnoid space surrounding the brain and spine, and may cause secondary intracranial hypertension and other serious problems. Chiari malformation is often congenital. However, there is evidence that, over time, sustained increased intracranial pressure may cause an acquired Chiari malformation. While an acquired Chiari malformation can also be the result of overdrainage from an LP shunt or multiple spinal taps, some research suggests that an acquired Chiari malformation is eight times more common in chronic IH patients who have not had shunting procedures.

Hydrocephalus (water of the brain)

There is considerable confusion regarding intracranial hypertension and hydrocephalus. Both are disorders of abnormal cerebrospinal fluid dynamics. In other words, something goes wrong with the normal cycle of CSF production, absorption and drainage in both IH and hydrocephalus.

Intracranial pressure is determined by the three main components within the skull —brain tissue, blood and CSF— working together. Under normal circumstances, these three components maintain a dynamic equilibrium. In order for this balance to be maintained, it is believed that CSF, which is produced at approximately .3 cc per minute, must also exit the skull at the same rate.

However, since the skull is a fixed container, made of bone that cannot expand, changes in the volume of any one of these three components leads to abnormal intracranial pressure. Intracranial hypertension in adults is defined as CSF pressure at 250mmH2O or above. In chronic IH, the exiting (or egress) of CSF is thought to be impaired while simultaneously the CSF production continues, which leads to elevated intracranial pressure.

In hydrocephalus, the ventricles (four small cisterns located within the brain) become enlarged and contain an excess of CSF. As part of the normal cycle of CSF production, CSF circulates through the ventricles before passing into the sub-arachnoid space surrounding the brain. If obstruction to CSF flow occurs within the ventricular system, then the ventricles up to the point of obstruction will become pressurized, fill with cerebrospinal fluid and in time, become enlarged. This is known as obstructive hydrocephalus.

The difference between IIH and hydrocephalus is that IIH fluid is encased in the extracellular space (located around each brain cell) rather than in the ventricles. In essence, then, the ventricles are compressed with IIH and expanded in the case of hydrocephalus.

Empty Sella Syndrome

Empty Sella Syndrome (ESS) is a disorder that involves the sella turcica, a bony structure at the base of the brain that surrounds and protects the pituitary gland. ESS occurs in up to 25 percent of the population. Unless the syndrome results in other medical problems, treatment for endocrine dysfunction associated with pituitary malfunction is symptomatic and supportive.

Pulsatile Tinnitus

Venous Sinus Stenosis (narrowing of the veins that take blood and CSF from the head) can lead to pulsatile tinnitus. The transverse and sigmoid venous sinuses (specific veins that are named sinus, that are of no relation to the facial sinuses) are located in proximity to the ear (from the brain side). Under normal circumstances blood flow is smooth. But if there is significant narrowing, blood flow becomes irregular and turbulent. As a result of this turbulent flow, a “whooshing” or heartbeat sound is produced in the vein and picked up by the ear, causing pulsatile tinnitus. Think of a garden hose; when pinched the water jets. Something similar happens in the venous sinuses; blood “jets'' because of the stenosis and the “jet” causes pulsatile tinnitus. Diamox and/or blood pressure medication may reduce or solve this issue, but if not a stent may be needed. Pulsatile tinnitus can happen for non-IIH reasons, or because it is structurally inclined, and may not be a good signifier of how high CSF pressure is.

Pulsatile Tinnitus

The illustration shows NORMAL venous sinuses in proximity to the ear. Normal blood flow is from the head towards the neck (white arrows).
The illustration shows NARROWED venous sinuses (red arrow) in proximity to the ear. Because of the stenosis there is turbulent blood flow causing pulsatile tinnitus (curved arrows).

Stenting alleviates the stenosis, restores normal blood flow and eliminates pulsatile tinnitus.

Pediatric Idiopathic Intracranial Hypertension

Pediatric IIH in young children represents a unique entity and isn’t necessarily associated with female sex or obesity. Older children and adolescents with the disease tend to have demographic characteristics similar to adults. Normal ICP varies with age, and values are not well established for children. Normal ICP values are less than 10 – 15 mmHg for older children, less than 3 – 7 mmHg for younger children and less than 1.5 – 6 mmHg in term infants. ICP values greater than 20 – 25 mmHg are considered to be increased and require treatment in most instances. ICP values greater than 40 mmHg indicate severe life-threatening intracranial hypertension and represent a life threatening emergency. In the case of preterm infants, normal ICP values average around 3 mmHg, with values greater than 7 mmHg indicating intracranial hypertension. The treating clinician should be aware that sedation could significantly raise ICP and lead to a falsely positive high opening pressure. A mildly increased opening pressure should only be treated if it makes sense as part of the child’s complete clinical picture.

Overall, the incidence of IIH in children is from 0.5 to 0.9 cases per 100,000. A study of pediatric patients with IIH recently demonstrated that only 43 percent of prepubertal children, compared to 81 percent of children aged 12 to 14 and 91 percent of teenagers aged 15 to 17, were obese. The same study also reported that only half of children with IIH under 12 years old were girls, while females comprised 88 percent of those IIH patients aged 12 to 14, and 100 percent of those older than 14. The unequal sex distribution and the predilection for overweight patients seems to only begin after puberty, likely as a result of hormonal changes. Based on these findings, it appears that in the prepubescent population, the predilections towards obesity and female gender do not apply, and these risk factors may not be helpful clinical markers. Since the onset of puberty is an important milestone in IIH and the age of pubertal onset is variable, standard criteria based on secondary sexual characteristics rather than age-specific criteria should be used.

The clinical presentation of pediatric IIH is similar to that in adults. Headache is the most common symptom and is present in approximately 90 percent of patients. There is no headache pattern that is specific for IIH. Symptoms include neck, shoulder or arm pain, nausea, vomiting, pulsatile tinnitus, double vision, blurred vision and floaters. Children can describe visual symptoms including transient visual loss, photophobia, and ‘shimmering lights with colored centers’.The diagnosis can be very challenging to make in young children who may have non-specific symptoms and cooperate poorly with the dilated eye exams. Visual loss from IIH can also present as a visual field defect, with an increased blind spot as the most common defect. Patients with IIH have normal levels of consciousness and functioning.

Headache is the main complaint among children with IIH and has been documented in 62–91% of cases. There are also reports of IIH without headache symptoms, either because the child is too young to articulate or because headaches are absent. The reason for lack of headache despite increased ICP is unknown. Children with IIH but without headaches, tend to have more neurological signs and vision loss at presentation and a poorer prognosis. The headaches may be a warning sign before vision loss occurs, and aggressive reduction of ICP and treatment of papilledema is critical.

Asymptomatic IIH, diagnosed when papilledema is incidentally noted during a routine physical exam, has become a recognized entity in younger children. These children are asymptomatic and apart from headache management, they receive the same treatment as those with symptoms.

The diagnosis of IIH in children is one of exclusion, as central nervous system neoplasms may present with similar symptoms. Nonthrobbing, intermittent headaches that occur upon awakening, behavior changes, seizures, and focal neurologic deficits are more likely seen in children with brain neoplasms as compared to those with IIH. Patients and parents should be asked whether the child has (1) any recent weight gain, (2) taken medications associated with IIH (tetracycline, chronic steroids recently tapered, synthetic GH), or has an underlying medical condition associated with IIH. Development of secondary sexual characteristics should also be recorded. The child should be asked whether he or she has visual symptoms, headache, nausea or vomiting, neck or back pain, or any other neurological complaints.

Currently, there is an ongoing randomized, controlled, double blind prospective study of treatment of IIH in adults, but no data exist in children. Therefore, treatment is empirically dictated by the level of vision loss and severity of headache. Toxic, metabolic, and nutritional causes must be promptly addressed, and weight loss must be encouraged in children who are overweight. We recommend a weight loss of 10% less than the child’s weight at diagnosis. Repeat lumbar punctures are discouraged by most experts because they are painful, poorly tolerated in young children, who often require sedation, and have short-lived effects as the drained spinal fluid is replenished in a day.

Medications, such as tetracycline, minocycline and doxycycline used to treat infections and acne, are common secondary causes of intracranial hypertension in children. The use of retinoids, such as isetretinoin (Accutane) or all trans-retinoic acid (used to treat one form of leukemia), as well as excessive vitamin A ingestion, can also cause secondary intracranial hypertension. Symptoms of IH can appear within days of beginning a course of treatment with a particular drug or it may take months to a year before symptoms develop.

Other secondary causes common among children include:

• Growth hormone therapy

• Steroid withdrawal (including topical steroids used in the treatment of eczema)

• The chemotherapy agent all trans-retinoic acid (used for treatment of promyelocytic leukemia)

• Venous sinus thrombosis (cerebral blood clots)

• Post-streptoccal infection (strep throat)

• Meningitis (bacterial or viral)

• Systemic diseases such as lupus, sarcoidosis, Lyme’s disease, Behcet disease

• Severe anemia

• Chiari malformation (congenital or acquired)

It’s also possible the onset of puberty hormones may trigger it in some teens.

Most cases of pediatric IIH respond to medical management; thus, surgical management is typically reserved only for those who fail medication. In rare instances, patients may respond to one spinal tap with resolution in papilledema without the need for additional therapy. Children with chronic IH face the same medical and surgical treatment options as adults, with the possibility of repeated procedures and accompanying risks. However, for unknown reasons, spontaneous remission of IH in children is also more common than it is in adults.

Remission

IIH may go away over months to years or it may be a lifelong medical problem. For many patients, IIH will go into spontaneous remission or resolve with treatment. The brain can be retrained through medications as to what should be happening. For people where weight was a factor, weight loss helps the processes. However, in about half the cases of remission IIH reoccurs, so you should stay aware of your symptoms and continue having regular checkups with your doctors.

Doctors Appointment To Do List

Tips to help you get the most from a visit to your healthcare provider:

Know the reason for your visit and what you want to happen.
Before your visit, write down questions you want answered.
Bring someone with you to help you ask questions and remember what your provider tells you.
At the visit, write down the name of a new diagnosis, and any new medicines, treatments, or tests. Also write down any new instructions your provider gives you.
Know why a new medicine or treatment is prescribed, and how it will help you. Also know what the side effects are.
Ask if your condition can be treated in other ways.
Know why a test or procedure is recommended and what the results could mean.
Know what to expect if you do not take the medicine or have the test or procedure.
If you have a follow-up appointment, write down the date, time, and purpose for that visit.
Know how you can contact your provider if you have questions.

Questions for Doctors

What tests will you perform and why?
Can you refer me to an opthamologist to check for papilledema and to help in vision monitoring? Can you refer me to a neurologist?
For lumbar punctures, what are the ranges of pressure that are normal? What does an elevated pressure mean, and should I be concerned about an unusually high pressure? What will you test my CSF for?
For MRIs / CTs, what do my images show? Will you need to order more diagnostic imaging, and why?
For visual issues, are there any concerns about the symptoms I am presenting? Will these issues resolve, and how long will it take for these issues to resolve?

How long will it take for medication and weight loss to show signs of improvement? When do I know that I will need further treatment beyond these measures, and what treatment can I expect to receive?
What should I avoid with my medication? Are there any drug interactions that I should be aware of? What side effects of this medication are expected, and what side effects should I alert you of?
Are there any symptoms that I should notify you about if I experience them? Should I keep a journal of my daily symptoms to discuss with you during check up appointments?
Do flare ups occur even with medication? Can this disease recur after remission, and what do I do if it does recur?

CHAPTER TWO

Living with IIH

Remember that everyone's journey is different. Some people have mild cases discovered at optometry appointments, and are quickly put into remission through a short term on medication. Other people spend years battling headaches and tests till they get their diagnoses, and some need surgeries to cope. The important thing is to stay calm, you have a diagnosis, and with knowledge and a treatment plan. It's going to get better. Take it one day at a time, but be realistic. It takes time to heal.

Never let a chronic illness make you feel guilty. Sometimes other parts of your life need to be put on hold while you take care of you, and that's okay, and we love you as you are. You might be sidetracked, and you might be derailed, and you may have to grieve for the loss of the life you expected to have - but realize your life isn't over and this is just part of your journey. You are still alive and moving around and a lot of people will see you as fine and not understand what is going on in your life. Find the ones who do and let yourself cry, be angry, and make plans for the future you are going to have.

Pain Relief, Supplements, Vitamins

Pain Relief

Warning: Taking too many painkillers too often can lead to dependency, and result in more headaches. Try to limit pain medication to 3 times per week. The pain is not going to be fully relieved without long term doctors treatment, but the pain may be reduced.

People generally have to find the mix that works right for them. It is usually a mix of naproxen, ibuprofen, acetaminophen, benadryl, excedrin migraine, sumatriptan, a muscle relaxer, and sleep.
An Ice Hat, an ice pack in the shape of a hat that you keep in the freezer and place on your head when the pain becomes intense. This freezes and numbs your head and relieves the pain.
A cold compress over the eyes and an ice pack on the neck. Some people prefer heating pads.
A massaging eye mask. An electric massager that covers the eyes and massages the temples.
Physical Therapy- helps to release all the pain tension held in the shoulders and neck, and teaches exercises and stretches to build muscles there to prevent the tension from building up again.
Therapeutic Lumbar Punctures to relieve pressure (not currently recommended, few doctors still recommend this procedure)
Pain Management Clinics can provide classes and support groups to help you cope and manage your pain.
Stent/Shunt surgeries to help relieve pressure.
Medical Marijuana has been said to help relieve pain.
Opioid medications may be prescribed, though not recommended.

Do Not Take Aspirin and Diamox Together! The interactions have major warnings.

Do Not Take Pepto Bismol and Diamox Together! The interactions have major warnings.

Vitamins & Supplements

The diuretics flush a lot of vitamins and fluids out of your system. You should be drinking a lot of water and electrolyte drinks to make up for this loss. Avoid excess vitamin A, this encourages CSF production. Avoid salt, this absorbs water and encourages it to stay in your head.

A general recommendation for a healthy person is half your weight in ounces, plus eight ounces for every 15 minutes of activity. It's expected being on a diuretic to drink at least this, though a general rule to make sure you're drinking enough is to make sure your urine is a pale yellow color.

Recommended electrolyte drinks are coconut water, VitaminWater, and Gatorade. You can also purchase powders to mix with water or into smoothies, like Ultima Replenisher Electrolyte Hydration Powder or LiquidIV.

Don't make any changes to your course of treatment without first consulting your doctor.

Check with your doctor or pharmacist about your over the counter medications.

Potassium - counteracts the tingling feeling from Diamox and Topamax. The pills have a very small quantity. You can also find it in avocado, coconut water, and potatoes.
Metabolic acidosis is a condition that can arise from diamox/topamax treatment if you don't take in enough electrolytes. High acidity of the blood may also cause increased fatigue. Speak with your doctor if you have concerns about this.
Magnesium - Magnesium is a mineral that is important for a number of body functions, and binds to specific receptors in the brain involved in migraine. Low brain magnesium has been associated with migraine aura. Studies suggest magnesium supplementation can be helpful for migraine with aura and menstrually-related migraine.
Vitamin D - supporting immune, brain, and nervous system health
Vitamin B2/Riboflavin - plays a vital role in maintaining the body’s energy supply - will make your urine fluorescent yellow.
Vitamin B12 - may help with memory and energy.
Butterbur - used for the prevention of migraine, has recently been associated with serious safety concerns. It is a perennial plant that may have an anti-inflammatory effect. Butterbur has long been used in herbal medicine for the treatment of many conditions, including the prevention of migraine. There are doubts are increasing about its long-term safety given the risk of liver damage and the lack of an actively regulated preparation.
Turmeric - may help reduce inflammation around the spine and joints, reducing back pain.
Boswellia - (Indian frankincense) is another common plant which is safe to consume in any form and which may help relieve headaches. There have been no rigorous trials of Boswellia conducted to date, but reports suggest that it may be worth a try for a variety of headaches.

Migraines/False Signal Headaches

The increased pressure on the brain can train the brain the ‘wrong pathways’ and someone with IIH can end up with increased triggers to migraines. The IIH can become under control, and you would still be in pain, not realizing it, because the daily migraines feel very similar, and you may need to learn how to control daily migraines on top of IIH.

Getting a specific headache diagnosis that is accurate is very important because it will have a major influence on matching your treatment plan to the type of headache and severity of illness. Diagnosis influences the treatment plan by directing the type of medical tests that are run, type of medications recommended and long-term management goals you and your practitioner select. More importantly, matching your beliefs about your headache type(s) to an accurate diagnosis is crucial, as otherwise test recommendations, medications and long-term behavioral management adherence is likely to decrease or not be started at all.

For example, the plan of care will be very different for headaches diagnosed as sinusitis than for headaches diagnosed as migraine. However, if you believe your headaches are due to sinus headache, while your practitioner believes you have migraine—resolving the differences so you can comfortably put recommendations into action is critical. For those with “chronic” migraine, a very different treatment regimen is likely to be offered than for those with less frequent “episodic” migraine.

Incorrect diagnosis leads to an inappropriate treatment plan and lack of relief for the patient. With chronic migraine, wrong treatment may even lead to a worsening of the headache condition. An accurate diagnosis yields the best chance for appropriate treatment to relieve symptoms. A diagnosis you believe to be incorrect causes you to likely distrust the treatment, so communication of your opinion about your headache beliefs is critical to resolve differences.

History of the illness—that is, when it started, how it has changed, and how long it takes to reach peak or worst pain/disability.

Physical (especially exam of your head and neck muscles) and neurological exams (especially your eyes) make or change the diagnosis 5% or less of the time.

Because symptom patterns tend to change over time—especially in the case of chronic headaches—accurate history is the important stuff of diagnosis. More often than the physical examination, the history helps determine the need for specialized tests—either to rule out progressive or life-threatening problems or to confirm a less worrisome diagnosis. Be aware that imaging and lab tests do not diagnose migraine or other so-called primary headaches. An accurate diagnosis then guides physicians to a specific treatment approach, one that is most often based on scientific research.

Research shows that at least one-third to one-half of patients seen in specialty headache clinics began with occasional migraine attacks that gradually progress or transform into chronic migraine. Sometimes, the migraine symptoms themselves will also transform over time. For example, the migraine symptoms might have initially involved severe throbbing pain on one side of the head accompanied by nausea and vomiting. After progression of the condition, headaches might occur on both sides of the head (bilateral) as a constant dull pain with or without nausea.

To assess if headaches are progressing, accurate and detailed descriptions of the headache duration and frequency are very important. This history will help ensure an accurate diagnosis. An understanding of the specific causes or contributing factors that lead to progression, and then reversing them, is key to successful treatment.

What are common risk factors for progression from an episodic headache to a chronic headache condition?

There are several risk factors that put the headache patient at risk for exacerbation of their condition. Several of these are “modifiable” or conditions that the patient with their physician can work with to help prevent headaches from progressing.

Modifiable risk factors are:

Medication overuse

Stress

Sleep disturbance

Obesity

Caffeine.

Some factors are not modifiable, such as a genetic predisposition. Therefore, it is important that patients work closely with their physician to help establish boundaries for those conditions that they have control over. Some modifiable risk factors are reviewed in detail below:

1. Medication overuse

An important and common cause of headache progression is overuse of certain headache medications. When taken often, the very medications used to treat tension-type and migraine headache attacks can cause episodic headache to progress into a chronic headache condition. The medications known to play a role in this process include:

Combination analgesics combined with caffeine (over-the-counter or prescription)

Caffeine

Ergotamine

Opiates

Over-the counter or prescribed analgesics

Triptans

All these medications can be effective in treating episodic headache when used on an occasional basis. However, when used more than two days a week, they may transform and aggravate headache. The result is called medication overuse headache (MOH), previously known as rebound or analgesic overuse headache.

For medication overuse headache, the pain usually improves when the acute medication is tapered and then discontinued. Within two months (and frequently sooner), the chronic headache pattern will revert back to the earlier episodic headache pattern or will remit. However, discontinuation of medications that are being overused should only be done under close supervision of your provider because serious side effects may occur. Some of these side effects may include temporary worsening of headache, seizures, agitation and sweating, among others.

That said, typically to get the process initiated, reduction of one tablet per week of any over the counter medication overused is safe without risk—except for pain worsening, while waiting for advice. Your provider should probably direct changes in prescription medications.

In straightforward simple MOH, but not necessarily very complex MOH patients the number of headaches usually improves over weeks following removal of medications that are being overused. This improvement confirms that the medication was indeed part of the problem. Even when episodic headache remains, it is often much more responsive to conventional treatment after the medication overuse has been eliminated. It is important to recognize that a history of medication overuse will put you at risk of future overuse. Therefore, many benefit from a daily preventive therapy in order to reduce frequent use of acute medications.

2. Stress

Stress is the most commonly identified trigger for a headache in the average headache sufferer. Therefore, it is not surprising that frequent life changes and chronic daily stressors or “hassles” are also implicated in the development of chronic headaches. These stressors may result in anxiety or depression, or occur more likely due to either condition. Recognition of these relationships can be key to developing an adequate treatment plan.

3. Sleep disturbance

Headache may be aggravated by frequent sleep disturbance. The most common sleep problem for headache sufferers is insomnia, including difficulty falling asleep, difficulty staying asleep, or poor quality “non-restful” sleep. Snoring is a specific risk factor for chronic headache in some patients. Though the cause is not known, snoring could disturb sleep quality or compromise breathing. Chronic inadequate sleep of approximately 6 hours or less per night also creates risk for more headaches.

4. Obesity

Obesity is associated with increasing headache frequency. Obesity is diagnosed with a body mass index (BMI) greater than 30 or a waist of greater than 35 inches for a woman and 40 inches for a man. Although the mechanisms for this are not well understood, several factors likely play a role. Diet and exercise are an important part of maintaining healthy headache hygiene. Discuss exercise and weight loss plans with your practitioner if you feel that this is something that you may be able to address in trying to control your headaches or keep your headaches from progressing. Any weight reduction when may be of benefit so return to a normal BMI of less than 25 need not be the goal.

5. Caffeine

Caffeine is added to certain pain medications because it can be beneficial for migraine when used occasionally and in moderation, defined ideally as two days per week or less. Frequent use of caffeine can also be a risk factor for headache progression. Caffeine is the most widely used, mood-altering substance in America. It is present in many beverages, dietary supplements, and in some foods, such as chocolate. Many Americans consume caffeine daily with very little awareness that they are ingesting a drug with potent effects. For some headache sufferers, caffeine aggravates headache in much the same way that medication overuse can. If eliminating caffeine, decide whether to cold turkey or taper it. The former may be associated with severe temporary exacerbation of headaches. A taper can be associated with failure to stop the caffeine and milder temporary mood variability.

Steps that can help reduce the risk of headache progression

Avoid using over-the-counter and acute prescription headache medications more than two days a week, with rare exceptions. If this is difficult, a daily medication to prevent migraine attacks may be useful.

Minimize use of caffeine.

Make lifestyle changes that help to manage stress including:

Routine exercise

Reduce stress

Eat healthily or lose weight, if needed

Try relaxation therapy, cognitive therapy or other non-drug approaches

Get sufficient sleep (a regular pattern of seven to eight hours of sleep per night).

Speak with your provider about persistently disturbed sleep- especially if you snore

Carefully follow your provider’s recommendations for any treatment plan

Make follow-up appointments and keep a routine headache diary so you have an accurate account of your headache frequency, medication taken and response to treatment.

Don’t drop out—keep seeking help if not succeeding in reducing headaches and ask for referral if need be to a specialist in headaches.

You may notice that certain foods or activities trigger a migraine attack. If you are able to identify triggers (and not everyone will), then take the proactive step to adjust your lifestyle to accommodate your needs. For example, if you know that your migraine symptoms are triggered by alcohol, try to abstain. If you experience a migraine attack when you wait too long between meals, always carry a snack with you. If you notice yourself experiencing severe head pain after nights of below-average sleep, plan to rest adequately in the future. If bright light triggers your migraine, don’t leave the house without sunglasses and a hat.

Some common trigger foods include:

Baked goods with yeast
Chocolate
Cultured dairy products
Fruits or juices such as citrus fruits, dried fruits, bananas, raspberries, red plums, papayas, passion fruit, figs, dates, and avocados
Nuts and nut butters
Olives
Soy products (miso, tempeh, soy sauce)
Tomatoes
Vegetables like onions, pea pods, some beans, corn, and sauerkraut
Vinegar

Cut Back on Cheese - Tyramine is a natural compound that forms in protein-rich foods as they age. It’s also a trigger for migraines. These cheeses are high in tyramine:

Blue
Brie
Cheddar
Feta
Mozzarella
Muenster
Parmesan
Swiss

Avoid These Additives - Chemicals added to food to enhance their flavor or help them stay fresh longer may bring on a headache:

MSG (monosodium glutamate). The main ingredient in soy sauce and meat tenderizer, MSG can spark a migraine within 20 minutes. It’s sometimes listed on packaged foods as “all natural preservatives” or “hydrolyzed protein.”
Nitrates and nitrites. These chemicals are found in many cured and processed meats, like hot dogs, ham, and bacon. Once they get into your system, they cause your blood vessels to swell, which can start a headache.
Aspartame. It’s unclear how this artificial sweetener, which is 150 times sweeter than sugar, causes headaches. More research is needed. Still, you may want to limit how much you use.

Watch What You Drink

You may have heard that red wine causes migraines, but other alcoholic drinks like beer, champagne, and hard liquor can also make your head pound. Certain ingredients in alcohol cause chemicals and blood vessels in your brain to act in an unusual way. You don’t need to spend all night at a bar for this to happen. For some people, one boozy drink can be enough to trigger a headache..
Caffeine can cause headaches. But it isn’t wise to go cold turkey on your favorite drinks. That could lead to a withdrawal headache. Instead, you may need to limit your caffeine intake to no more than 200 milligrams a day. That’s about one small cup of coffee. Remember, it isn’t just hot drinks and some sodas that have caffeine. Chocolate has some, too. For other people, caffeine may help reduce headaches - do what works best for you.

Check Your Eating Habits - It isn’t just the food you eat that can trigger a migraine. Your eating habits play a role as well. You may get a headache if you:

Don’t eat enough
Don’t drink enough water
Skip meals

Eat more “mini” meals. Instead of three large meals each day, opt for five or six small ones. This will prevent you from getting a headache because you’re hungry. You’re also less likely to eat a lot of a single food that could trigger a migraine.

Drink plenty of water. To stay hydrated, sip at least eight glasses of water each day.

How to Do an Elimination Diet

If you suspect that certain foods or drinks trigger your migraine, an elimination diet could help. You'll cut out foods and drinks that can trigger migraines and then slowly add them back. If your migraine symptoms return, it may be a sign that it's because of a certain food. Go slow. Don’t cut out everything that might cause a headache at once. That’ll only make it harder to figure out which ones affect you. Also, it’s a bad idea for children and pregnant women to restrict food. Instead, cut out one potential food trigger at a time. Keep track of how you feel over the next month. This should help you decide whether the food in question is a problem or if you can start eating it again.

Keep a food journal. A diary will help you keep track of your diet. If you get a migraine, don't look only at what you ate that day. Go back as far as 3 days before.

Sometimes, people crave the foods that will trigger their migraine. If you suspect a certain food or drink, remove it from your diet again for at least a month. Click the links below for more information.

https://americanmigrainefoundation.org/resource-library/diet/

https://www.webmd.com/migraines-headaches/tyramine-and-migraines

Weather and Barometric Pressure

In a survey by the National Headache Foundation, headache sufferers were given a list of 16 possible triggers. They then were asked to rank them in terms of what commonly brought on their migraines and other headaches. Three out of every four respondents said that weather triggered their headache pain. Weather changes can also cause pulsatile tinnitus to get worse. It can also cause the feeling of your ears being clogged or filled with fluid. Specific weather triggers include:

Changes in humidity
Changes in temperature
Storms
Extremely dry conditions
Dusty environments

Barometric pressure is the measurement of air pressure in the atmosphere, specifically the measurement of the weight exerted by air molecules at a given point on Earth. Barometric pressure changes constantly and is always different depending on where the reading takes place. Barometric pressure also changes with the weather—or rather, the weather changes with changes in barometric pressure. Being able to measure and analyze small changes in atmospheric pressure helps meteorologists track the weather and predict storms.

When the outside barometric pressure lowers, it creates a difference between the pressure in the outside air and the air in your sinuses. That can result in pain. The same thing happens when you are on a plane. As the pressure changes with the altitude on takeoff, you might experience ear popping or pain from that change.

The barometric pressure doesn’t have to change drastically to cause headaches, either. In a study Trusted Source published in 2015, researchers looked at the effects of barometric pressure on people with chronic migraines. The researchers found that even small decreases in barometric pressure induced headaches.

Least Barometric Change (US)	Most Barometric Change (US)
Honolulu (0 days per year)	Augusta, Maine (128 days per year)
Miami (4)	Rapid City, SD (127)
San Diago (7)	Montpelier, VT (117)
Los Angeles (7)	Bismarck, ND (117)
Tampa (11)	Boston (116)
San Jose (14)	Colorado Spring (113)
Sacramento (18)	Denver (113)
San Francisco (18)	Billings, MT (109)
Phoenix (22)	Providence (109)
New Orleans (22)	New Haven (105)
Jacksonville (22)	Cheyenne (105)
Birmingham (29)	Anchorage (104)
Houston (29)	Detroit (102)
Atlanta (37)	New York City (99)
San Antonio (37)	Buffalo (98)
Austin (37)	Minneapolis (98)
Memphis (44)	Omaha (94)
Las Vegas (47)	Chicago (91)
Little Rock (48)	Philadelphia (90)
Charleston, SC (48)	Baltimore (87)

QuickTips

Doctors

You are allowed to change doctors if you don't feel comfortable or confident in the one you start with.
Get an agenda diary/symptom journal and keep a log of how you feel every day.This will help you remember everything you need to when you have your doctors appointments, and you have everything written down. I use smiley faces to show how I feel, and where the pain is on my head, with a number (1-10) to rate how bad the pain is. It’s an easy, quick visible reference to show me how good or bad things were, and I can always take more detailed notes if needed. Your doctor will appreciate your thoroughness.
Ask your doctor to run a blood panel periodically. All the diuretics can flush a lot of nutrients out of your system and leave you deficient, which is part of why it's so important you drink electrolyte drinks every day. Ask for a blood test called an arterial blood gas which looks at the levels of oxygen and carbon dioxide in your blood. You can also ask for a basic metabolic panel to check kidney function,pH balance, and electrolyte levels. On high doses of diamox (4000mg/day) this should be checked more frequently.
Prevent kidney stones. Drink water water water.

Medications

DRINK ELECTROLYTE DRINKS + POTASSIUM
Omeprazole/Tums/Gaviscon may be needed to counteract the GERD caused by all the pills you're taking. There is a warning against taking pepto-bismol or any bismuth subsalicylate medication with diamox. Check drugs.com to make sure your medications don’t interact or call your pharmacist for more information.
It takes up to 12 weeks for Diamox to work.
Pins and Needles are completely normal to feel when taking diamox/topamax. Increase your potassium/magnesium/water intake to help.Other side effects include nausea, vomiting, diarrhea, drowsiness, and changes in tastes. It can take a few months for these side effects to subside, and some of them may not completely.
Imodium and or probiotics, and a well balanced high fiber diet may be necessary to help counteract some side effects of the medications. These side effects should improve over time.
As now that you're losing all this fluid through urination a lot of people get tired from not having the amount of hydration and electrolytes, and thus potassium, as they're used to and need. You might have to keep hydrated better, maybe drink some Gatorade and eat potassium rich foods when you feel sluggish, and if it continues call your doctor you might need potassium supplement or something beyond that.
Lasix makes you pee for 6 hours after you take the pill, so don’t take it after 6 hrs before you plan to go to bed.
Diamox really dries you out. Use a humidifier, moisturizer, nasal saline, and eye drops to help.
Taking a decongestant can temporarily ease congestion, but it can also create a slight increase in your blood pressure. If you already have high blood pressure, especially if it’s not controlled, this may be a concern. Decongestants also can interfere with the effectiveness of certain blood pressure medications. If you’re on blood pressure medication, check with your doctor or pharmacist before taking a nasal decongestant. Extended-release decongestants may be less likely to raise blood pressure than the immediate-release kind but can still cause problems.
Check to make sure that no medications you’re taking interact with grapefruit juice. Visit https://www.fda.gov/consumers/consumer-updates/grapefruit-juice-and-some-drugs-dont-mix for more information.

Exercise

Increasing your heart rate can increase your ICP.
Lifting weights too heavy can increase ICP.
Don’t make yourself more sick trying to work out to lose weight.
Short walks multiple times per day can be better than one long walk.
Desk bikes while watching TV.
Low weights, more reps.
Exercise bands.
Water aerobics.
Find something you enjoy doing and are capable of doing.

Day to Day Life

A silicon earplug dulls the whooshing.
Starting the meds can be rough and have some uncomfortable side effects. Start with a low dose, give it time to pass, then slowly increase. The side effects usually pass with time.
Sleeping with a bed wedge pillow allows the CSF to drain downward and prevents it from pooling in the head, allowing a more restful night's sleep, with less grogginess in the morning.
Sometimes facial/head/neck muscle tighten/relaxation exercises and stretches to make sure your muscles are relaxed can help reduce pain.
The muscle at the base of the skull can get very tight, massaging it can help. You can also put two tennis balls in a sock and lay down with the socks resting there, moving head periodically. Do this for about 2 minutes. At first it may make this area tender as it breaks up the knots but doing this every few days can help with long term relief.
Don’t bend over. Squat.
What memory? Memory exercises can help improve this issue. Speak to your doctor about your concerns and they should have exercises for you to do daily. Keep a calendar and take lots of notes to help cope with increased memory issues.
Use a white noise machine to drown out the tinnitus, preferably with sleeping headphones.
Symptoms may get worse around your period when your hormones are elevated. If they do have a discussion with your doctor about ways to minimize this.
Being diagnosed with a chronic illness is difficult, and having a therapist to be there with you to help support you through it could be very helpful.
Your brain is under constant trauma and needs to rest and recover. You need time.
It is possible for you to spring a leak and cerebral spinal fluid to gush out of your ear or nose. It will be like water. Try to collect some for testing. The leak might close on its own, if it keeps happening the leak will need to be closed. The good news is that low pressure headaches, the kind that lead to debilitating headaches and bloodpatches, don’t happen with leaks above the neck.
Try to go for walks. Slowly build up your tolerance with a goal to hit 4 miles of walking a day.
Keep an eye on your anger, your frustrations, and how you’re affecting the people in your life. You’re going through a lot, but you’ve also experienced some ‘brain damage’ and may not be exactly the same, and may not be fully aware of it.Cognitive processing also gets pretty impacted.
Go to facebook, reddit, or other social media forums for support groups.
Cutting your hair, or shaving the underside of your hair, will reduce the weight on your head and may provide some relief.
Photosensitivity - Sunglasses are your best friend. I recommend starting with one pair of standard category 3 sunglasses. If you still find issues, increase to category 4 sunglasses. You may need to buy add on flappy sunglass attachment for extra darkness. Sunglasses that are actually a full darkness sleep mask are available. In case of emergency, welding goggles do work, but the tinting isn’t great. Hats are recommended.
You may find blue light blocking glasses helpful. The standard marketed computer light blue blockers work moderately well, but you may find FL-41 glasses more useful - both interior and sunglasses. Also installing f.lux (a blue light filter) on your computer, and a blue light filter app on your phone to diminish the brightness and blue light. Prescription lenses with blue light filters are available.
People sometimes find showers to be exhausting and take a lot out of them. Ideas about why say the heat and humidity can make breathing harder, lifting the arms up repeatedly, the increased weight on the head can cause strain on the shoulder and neck muscles, bending over repeatedly can cause an increase in pain - making the experience unpleasant. Some people chose to take evening showers or keep a chair in the shower to help work around this experience.
Insomnia, the confusing bedfellow of the fatigue. Sleep may come quickly, but then you wake up after only a few hours. Try not to nap, try to keep a regular schedule, and take melatonin. A weighted blanket may help. Keep an eye on your snoring to make sure it's not sleep apnea.
It can cause problems with body temperature control when there is overexposure to the sun and its heat on hot days. Avoid sunbathing and stay in the shade outside or in the coolest part of an indoor room to counteract this problem. Direct sunlight may also affect the spatial judgments needed to safely cross a street or judge the distance and speed of traffic.
Be forgiving to yourself. Try to listen to your body. Rest, if you can, when your body demands rest. Find ways to find peace and de-stress your life, stress can be a huge trigger.
Comfy blankets and pillows go a long way, you'll be doing a lot of sleeping and laying down so invest in it.

A Few Food QuickTips

Reduce salt intake, salt retains water, and can help retain the fluid in your brain.
Many, but not all people taking diamox or topamax find they cannot taste carbonation anymore.
Some people find eating their last meal earlier in the day helps them prevent a headache. They also find having an overly full stomach increases head pain
Reeses Pieces do not have chocolate.
Drink lots of electrolyte water, it's better if it doesn’t include vitamin A.
Drink a lot of water.
Carob chips can be used as chocolate chip substitutes. It doesn't have the same flavor punch, so more chips must be added than expected.
An anti-inflammatory diet or anti-histamine diet may help reduce your symptoms. Try planning a week of meals on an anti inflammatory diet and see if you're in any less pain.
Seedlip makes a wonderful non-alcoholic spirit substitute.
St. Regis non-alcoholic wines taste very much like real wine. Also contains a surprising amount of potassium.
One of the biggest things that helps reduce the pins and needles caused by low levels of potassium. Foods that are high in potassium include: Avocado, Spinach, Acorn and butternut squash, Bananas, Sweet potatoes, Salmon, Mango, Papaya, Coconut water, White and black beans, Watermelon, Beets, and Yogurt. Be aware you can also have too much potassium in your diet which can be harmful, but that's hard to achieve while on high doses of diuretic.
Vitamin A is a key component in the production of CSF and you want to make sure not to intake too much of it. Be aware of what you're eating so you don't take multivitamins or drink electrolyte drinks where you end up eating 500 times the recommended daily dose of Vitamin A. Foods rich in vitamin A include beef liver, sweet potatoes, carrots, tomatoes, and leafy greens. Ask your doctor if you need to be on a special diet.

Natural Diuretics

Some herbs and dietary supplements have diuretic properties that may be helpful to you. These do not replace treatment. Diamox and Topamax are targeted medicines that work much more efficiently to lower cerebral spinal fluid. Trying these would be in an attempt to slightly lower any remaining symptoms, or or help alleviate pain during a bad flare up.

Below are seven common herbs and supplements that act as natural diuretics. Early scientific studies have shown that many of these alternatives help the body excrete excess fluid. Before trying these remedies, talk to your doctor about dosages and potential drug interactions.

Dandelion

To some, the dandelion is just a weed. But research has found that one of the plant’s compounds enhances kidney activity and increases the frequency of urination. Try dandelion in a tea.

Hawthorn

This relative of the rose family is a powerful diuretic. It can reduce fluid buildup, which means it can also improve symptoms of congestive heart failure. Research has shown that the plant’s nutrients increase urinary excretion and flow.

Hawthorn berries can also act as diuretics and may help treat kidney problems. Hawthorn is available as a tea.

Horsetail

A 2014 study found that horsetail extract had the same diuretic effects as prescription medications, but with fewer side effects. Horsetail may be a good alternative to prescription diuretics, especially if you’ve had problems with side effects. Horsetail is also available as a tea.

Juniper

The juniper plant has been used as a diuretic since medieval times. Few modern-day studies have proven its benefits, but the evergreen has shown to have a significant effect on urine volume in animals.

Like many natural diuretics, juniper doesn’t seem to lower potassium levels like some drugs do. Try adding juniper to flavor meat and game dishes.

Green and black tea

Every time you enjoy a hot cup of tea, you may be flushing excess fluid from your system. Both green and black teas have shown potential as natural diuretics.

Parsley

While parsley is mainly used as a garnish, it may be useful for people who are having trouble tolerating diuretic drugs. A 2002 study found that it may help with urinary volume. More recent researchTrusted Source has also confirmed its diuretic properties.

Hibiscus

This beautiful flower has more than just its looks. Roselle, a species of hibiscus, showed significant diuretic effects in one 2012 study. A different study from that same year also noted that hibiscus helped increase kidney filtration. Hibiscus is available as a tea.

Coconut Pomegranate Mojito Mocktail aka Potassium Drink

Both coconut water and pomegranate juice are great sources of potassium. This mixed drink makes a great high flavor way to stay hydrated.

Ingredients

1/4 cup fresh mint leaves

1/4 cup pomegranate juice

1/4 cup coconut water

1 lime, juiced

sparkling water

Flavored Ice

1/2 cup coconut water

1/4 cup pomegranate arils

Instructions

Muddle mint with lime juice in a sturdy bowl. Add pomegranate juice. Then add coconut water and finish with sparkling water.

Flavored ice

Pour coconut water into an ice cube tray. Add 2-3 pomegranate arils to each cube. Freeze.

Turmeric Tea aka Golden Milk

The ingredients in golden milk have potential anti-inflammatory properties. Chronic inflammation is thought to play a major role in chronic diseases, including cancer, metabolic syndrome, Alzheimer’s and heart disease. For this reason, diets rich in anti-inflammatory compounds may reduce your risk of these conditions.

Research shows that ginger, cinnamon and curcumin — the active ingredient in turmeric — have potent anti-inflammatory properties. Golden milk is rich in antioxidants, which help protect cells from damage, fight off disease and infections and may contribute to your overall health.

Ingredients

1 cup unsweetened almond milk or coconut milk

2 teaspoons honey plus additional to taste (to make vegan, swap maple syrup)

1 1/2 teaspoons almond butter or 1 teaspoon coconut oil

1/2 teaspoon pure vanilla extract

1/2 teaspoon Cinnamon plus additional for serving

1/4 teaspoon Ground Turmeric

1/8 teaspoon Ground Ginger

Pinch Black Pepper

Optional additions: tiny pinch ground cardamom, or ground cloves

Instructions

Combine the milk, honey, almond butter, vanilla extract, cinnamon, turmeric, ginger,black pepper, and any optional spices in a small saucepan.

Heat over medium until warmed through, whisking briskly so that the almond butter or oil does not stick to the bottom and the spices incorporate. Do not let boil. Turn off heat and taste to adjust flavor. Add more sweetener to taste or more turmeric or ginger for intense spice + flavor. Pour into a mug and sip deeply.

Notes

Leftovers can be stored in an airtight container such as a mason jar in the refrigerator for up to 3 days, so I like to make a double or triple batch, then enjoy it several nights in a row. Reheat on the stove, stirring to recombine the spices and almond butter.

Hot Carob Cocoa

2 cups milk

2 TBSP carob powder

2 TBSP honey

dash of vanilla extract

bit of ground cinnamon

Toss' em all into a blender, or a ninja. Blend for 30ish seconds. Pour through a fine mesh strainer into a saucepan and heat while stirring until hot but not boiling. Pour into mugs and serve.

Don't try to use an immersion blender on the stove, that will end in failure. Don't try to whisk your mixture on the stove, that will end in failure. Don't use a spoon to stir your cocoa mixture, that will end in failure. Don't try to mix carob with water, that will end in failure.

Feel free to use A2 milk or nut milks with the carob, those all work. Try swapping out the honey for maple syrup, that's a tasty twist. A dash of nutmeg, or ginger, or cloves can also be nice.

CHAPTER THREE

Personal Stories

Mary from California’s Story

Firstly, I am 29F. I had no vision issues prior or any symptoms of IIH in my life. I have mild tinnitus, but my whole family does as well. And I had slight blood whooshing as I lied down. I thought it was normal. I was at my heaviest of 185 lbs at a height of 5' 1".

One day I started getting dizzy and bad eye strain at work with a mild headache, but somehow still had my full balance. I went home to my aunt's as I did not trust to be alone in case I fell over. I took Excedrin, slept on her bed, thinking a migraine was forming. And prayed it would be gone when I woke up hours later.

Except it didn't. Went to the ER that night with my parents. They did a MRI on my head. Came back negative. Gave me some antimigraine meds and told me I'd be okay. I stuck to Advil. Couple days later still dizzy, still had pressure. On and off headaches. Right eye was blurry if I read something far away. My dad suspected my time had come, everyone in my family wears glasses but me, and I probably needed them now. So I went to see my Optometrist.

She had done her tests. Everything came back perfect. Vision field was excellent. Even with my slightly blurry right eye. Vision was surpassed 20/20 as it had been my whole life. I didn't understand what was happening. She ran more tests and took pictures of my eyes. She said everything looked healthy. She then pulled up my old charts, stayed quiet, and showed me side by side. "Your optic nerves are possibly swollen", she said. The ring around the edge of the nerve was fading in some parts. She explained to me what she thought I might have, IIH. Pressure build up on my optic nerves due to my body creating too much spinal fluid or not draining fast enough.

As she explained IIH briefly to me, I started crying. I felt it was unfair that being the only one in my family gifted with green eyes and perfect vision that something this bad could happen and out of nowhere. I was angry that there was no official cure, or even a direct cause for it. I was more angry with the world against me, as a month prior, I was diagnosed with Celiac as well. I thought I would need to learn piano and play it blindly at piano bars. I researched jobs I could do if I went blind.

But back to the hospital I went. To confirm if what was presumed was true. They did more MRI tests. They gave me an antimigraine med cocktail. They did a spinal tap. I had a pressure of 31 in my spine, confirming IIH. To be honest. The experience was a nightmare. I had 3 panic attacks from the antimigraine meds alone as well as 2 attacks in the MRI machine. The "medication" that is meant to help you relax gave me massive anxiety. My body was fighting the relaxation. I hated the feeling of losing control. They ended up giving me anxiety meds for the spinal tap exam. I fell asleep during the whole process. Thank God. And I kept telling myself, "by tomorrow night it will all be over."

I was started on 250 mg of Diamox. 4 doses a day. They deduced that my IIH was kicked into activation from recently switching to a new birth control and being overweight. No longer allowed to be on BC.

From someone who rarely exercised: Physically, it was hard. Mentally, it was chaotic. I had never been more determined and more depressed in my life. I made sure to look and admire everything. Remembering my parents faces, the sky, my backyard grass. Which all made me cry thinking that possibly I might go blind.

The side effects from the Diamox... oh my. Fire ants eating at my toes, fingertips, and lips. My nerves went haywire. Always got worse at night. The tinnitus shot up tenfold. I couldn't hear a thing as I tried to sleep. I was dizzy the first 2 weeks if I got up too fast. THE NIGHTMARES. They lasted about 3 weeks. Vivid nightmares of the world ending or someone trying to murder me. And me fighting my way to survive. I became afraid to fall asleep. Paranoia hit bad. When I finally did sleep, my nerve pain would wake me up. I would slowly walk in my backyard concrete until it diminished to something bearable. The cold on my feet helped immensely. So did potassium pills. But consult with your doctor. Mine had me stop taking them as I got enough in my diet. And then I was taking too much.

My cousin, who is also a psychologist and a fitness buff, pushed me to be stronger. We exercised everyday from February 2020 - NOW. She made sure I wouldn't quit and had all the patience as I broke down crying mid workouts in the beginning. In that period I lost my grandfather to Covid, my boyfriend of 4 years and I broke up, and I lost a couple people who I thought were my friends, as I battled with IIH. It wasn't easy but they were life lessons.

Thankfully, other than random headaches and eye pressure pain on some days, I managed to keep my full perfect vision. I do have some permanent optic nerve damage but I am thankful I can still see.

Around August 2020, I received the news from my Opthamologist that I finally had no more swelling. All from changing my eating and exercise habits drastically. I now weigh 138 and still trying to reach my goal of 125. As of a month ago, I am completely weaned off of Diamox. I feel so much better and my self esteem shot up. Not because of the weight loss, but because I finally feel so good health wise. I haven't felt this good in years.

I am hoping my symptoms don't ever come back. I always hear for some people they do after a couple of years. I wouldn't want to wish what I went through onto anyone. It was a hard battle to go through. Physically. Mentally, and Emotionally. I am nowhere near finished with this new lifestyle. And, yes, I still do look around and cry as I could have lost my vision and not see something with beauty again.

Audrey from Massachusetts’ Story

Way back, in 2007, a sophomore in college, I was diagnosed with Graves Disease, a hyperthyroid disorder. I dropped out of school for a bit, got control of my health, and continued to spend the next 10 years of my life in and out of remission until January 2018 when my thyroid was removed, and I felt better than I had in over a decade. I felt like I had my life back. I joined clubs, I started dating again, I hired a personal trainer… and with dating comes getting the mirena and with the personal trainer comes changes in muscle mass, so my endocrinologist kept having to reduce my thyroid hormone supplements every couple of months. (Both of these could have triggered IIH).

In November 2019 I started struggling at the gym, getting dizzy and blacking out during a work out and needing to call for a ride home. Quickly this turned into a pounding headache that didn’t stop, accompanied by the sound of my pulse in my ear, so in early December I went to the doctor, who treated me for migraine and sent me on my way. 4 days later I went back, and he told me to go to the ER to make sure I didn’t have something more serious wrong. The ER did a CAT scan, told me I had sinusitis, and told me to buy a humidifier. Which I did the next day. The biggest one I could find. A week and a half later I returned to my doctor who gave me antibiotics for this sinus infection. A week after that I got a referral to an ENT, because of the noise in my ear. The ENT confirmed I had hearing loss due to the pulsatile tinnitus, and recommended I have some MRI’s done. It took 2 weeks to get that scheduled. The day after the MRI I got a call from the ENT’s office where I was told I had IIH, and I needed to see a neurologist immediately. They could not refer me to a neurologist, or point me in the right direction, just inform me I needed to see one.

So I called my therapist. My therapist made an appointment for me with my PCP that afternoon where we could discuss what IIH is and come up with a game plan. This helped calm me down immensely, ground me, and help me focus on what I needed to do next. The next day I spent 7 hours calling every single neurology office in the Greater Boston Area and got an appointment with a neurologist 2 days later.There is something to be said for living in an area like Boston sometimes.

The meeting with the neurologist went well. She said the MRI looked at the IIH, and in her eye exam it looked like I had some minor papilledema, but she wanted both a MRV and a Lumbar Puncture to confirm. She prescribed me diamox to start immediately, and I called 3 different pharmacies to find one that carried it so I could get it immediately. And then I was almost late for my sister's birthday because I needed to pick it up first. I was so hopeful it would get rid of my headache. It toned it down and gave me full body pins and needles.

A few days later I went for the MRV. I was surprised it was in a shed in a parking lot. Turns out the real one they build too close to a train track and every time a train went by the image got distorted, so it’s sitting empty, and they use a portable one in a shed where you change in a tent outside.

The Lumber Puncture happened on a friday. My mother drove me in. On our way into the office there was a shooting in the lobby. We were all told to leave the building, but no - the shooters were right there, in the lobby, so we went through to the back and waited for the all clear. We watched the police come and secure the scene while waiting to be called in.

I had a fluoroscopy procedure done, so I laid on my stomach in the procedure room while imaging was used to guide the doctors exactly where to aim their needles. It was a disconcerting experience, but didn’t take too long. They did not have me lay down to rest afterwards, they just bandaged me up and sent me on my way. I’m not sure if the shooting changed their normal operating procedures or not. I was told to go home, lie down, and drink lots of caffeine.

The after did not go well. I immediately had a pounding headache, that quickly turned into the worst headache I’ve ever experienced in my life. I could not remain upright. I collapsed. I had to be perfectly flat to not be writhing in excruciating pain. Over the next 2 days we called the hospital 3 times before they said ‘come in now’. When I got there Sunday morning I was admitted and monitored for the next 2 days until a blood patch was administered. It took about six hours for the pain to abate and the whooshing noise to return.

Also while this was happening my grandmother died and her wake was the day after I got out of the hospital. I was insistent with the doctors that I make her funeral.

And then Covid and my physical therapy and neuro-opthamology appointments were rescheduled for summer, months away. Fabulous. I was stuck in a never ending migraine and nothing the neurologist was prescribing was stopping it. I couldn’t stand light, couldn't watch tv, couldn't read, couldn't go outside because the sun was too bright and overwhelmed me, and it never stopped. The migraine abortives given to me at the ER did not help either. During this time I checked in with my PCP and therapist weekly, and it was helpful to stay in contact with people to make sure people knew what was going on with me, and talk through how I was feeling.

My neurologist kept increasing the Diamox dosage to the maximum dosage, but the headache wasn’t changing, so starting in June I began seeing a new neurologist who specializes in headaches, and he began treating me for both migraines and iih, and I was finally seeing a reduction in daily pain. We’ve reached a point where he thinks that the iih is under control, and that my remaining constant pain and tinnitus are an oversensitized brain. Now the trick became figuring out all my new migraine triggers that would leave me crippled. I had a few major setbacks, doing the ‘wrong thing’ that left me in bed for weeks at a time, but with help I’ve recovered from those and I’ve learned my new limitations. They are frustrating, and I’ve had to go through grieving processes for the loss of the life I used to live, and find work arounds and coping mechanisms to make the most of the life I can still lead. I’ve not given up hope I can still do things, I just need to be patient and make plans ahead of time.

As long as I take life slow the pain is mostly manageable now, though still exhausting and I sleep a lot. The pulsatile tinnitus is something I haven’t learned to live with yet. I’m better than I was 6 months ago, and I have to hold onto those improvements. I still live in hope that with treatments and time I’ll continue to get better and someday be able to go back to living my life without fear.

Alicia from Virginia’s Story

So for me it started when I was in high school. I was a freshman and I started to black out from headaches, but the doctors just told me that I had migraines. Fast forward a few years later to 2005 - I was 25 when I gave birth to our first child, our daughter, on December 30. I had gained about 50 pound and had developed Preeclampsia. After I gave birth they had a hard time getting my blood pressure to go down, but thankfully, finally, it did.

About 5 months later my husband deployed to Iraq for the first time and I went back to Illinois with our daughter. In August of 2006 I began to get very bad headaches everyday and my vision was off and when I would go from sitting to standing, and it would take a few minutes to come back. I would see black, I would see waves, so I knew something was wrong. I went to my regular doctor and they told me I had a sinus infection and put me on a medication to treat it. It only continued to get worse. I went back to my doctor at this point. I told her that I felt worse. Now, my mom’s sister had Multiple Sclerosis and had become blind from it at the age of 13 so I thought I might be developing MS. My doctor assured me I didn’t have MS and put me on a stronger sinus medicine and told me I would get better. After a week I only got worse. I also wore glasses and contacts, so at this point I reached out to my eye doctor and made an appointment with her and she got me right in as an emergency. When I went in and saw her she dilated my eyes and right away she saw that I had papilledema. She called my PCM and my PCM called my local hospital and had a spinal tap ordered for that day. My PCM also made an appointment with a neurologist for the next day. When I went and did my spinal tap that day, the doctor at the hospital didn’t do an opening pressure. When I went and saw the neurologist the next day she had to order another spinal tap for the next day with an opening pressure. My first opening pressure was 44. I was put on diamox and found out that I couldn’t take it because it made me violently ill, so then I was put on topamax. In the first 6 months I lost 80 pounds,down from 200.

My husband came home from deployment and I moved back to Washington state to live with him and was followed by an amazing neuro-opthamologist on the military base where we lived. I went into remission and life was great. My husband and I decided to have another baby after very lengthy conversations with our neurologist and we became pregnant. My life was good and I had a spinal tap here and there for many years and saw many different neuro doctors. Then in 2016 my headaches started to come back and my vision started to bother me, but we were moving once again. We lived in Colorado and the neurologist started to notice that my eyes just weren’t right. She told me that once I moved to a new duty station to have my eyes looked at. Once we got to Pennsylvania, I went to my PCM and had him send me to a neurologist and an ophthalmologist. Once I saw the new neurologist, he had me do another spinal tap. This spinal tap didn’t go very well. A few days later, I had to have a blood patch. This is the worst thing I have ever done. I passed right out. It was so painful. A month later he had me do another spinal tap but sedated. This was the highest opening pressure I have ever had. My OP was 65. From there, I was told I needed to have a shunt. My neurologist sent me to a neurosurgeon and he told me I didn’t qualify because shunts fail so much. I went back to the neurologist and he sent me to another neurosurgeon and he said the same thing. I then went to my PCM and he sent me to a neurosurgeon and that neurosurgeon told me the same thing. Then my PCM asked me if I would go to Walter Reed. I went to see NeuroSurgery there. The doctor I saw there had gone to Ohio State and had treated over 150 people on their trial program with IIH. I thought I had hit the jackpot!!!! He had told me that most people with my condition have an underlying issue. He asked me to have a complex MRI. My husband and I said that we have had MRI’s before, but ok. A couple weeks later we went and had our MRI and met with another doctor. Low and behold, I had bilateral venous sinus stenosis and because both of them were collapsed the fluid can’t drain. My husband and I were pissed. How for the last 12-13 years was this missed on my MRI’s? But now we had an answer. A month later I was laying in a room having testing done to see how bad the stenosis’ really were. Then on June 19, 2017 I had a stent place in my right venous sinus vein. I spent a week in the hospital. Life was rough afterwards. I got blood clots in my legs and my headaches didn’t go away, but it got better. I am 3 years post surgery and I take Aimovig once a month and Topamax twice daily still, but I can tell you that I can enjoy my life to the fullest and my kids every single day. My headaches aren’t gone, but I can at least live life to the fullest now!

Gabe from Georgia’s story

I was a healthy kid growing up, never had any medical issues except for the common cold every now and then. On my 14th birthday, my dad got me a four wheeler. I was in love and was ecstatic to ride it. I don’t remember much that occurred, but my neighbors were outside when I got into the accident. I had a helmet on, but unfortunately the strap came loose. My neighbor told my parents that I went too fast around a corner and flipped the four wheeler. I hit my head on the concrete and flew back up, with the helmet then coming off. I hit my head again on the concrete without the helmet. I was diagnosed with a minor traumatic brain injury. Lots of stitches and physical therapy. Thankfully I did not fall unconscious, but I don’t remember anything that occurred that day, or the following days after that.

Roughly ten months later I woke up with a migraine. I didn’t think much of it as I had been having them since my accident. I went to my moms office to help her pack things up and then went home to sleep it off. The next day I still had a migraine and nothing would touch it. My mom said that if I still had a migraine when the doctor's office opened up the next day, she would take me in.The next day I went to see my primary care physician. By this time the lights were very painful for me, and I wore sunglasses everywhere. The doctor said that I probably had a sinus infection, but to get a CT scan just in case. When the scan came back, she said I just had a sinus infection and gave me antibiotics. On day four of the antibiotics, my migraine had gotten worse,I started having vision problems and I was throwing up. Everything was very blurry. I went back and was told to either go to a neurologist or ophthalmologist. My parents decided on the neurologist since I was having migraines.

The following week I went to the neurologist, by this time I was pretty much completely blind. I could only tell if light was on or not. I went back and they treated me as an emergency at first, then decided I was fine. The neurologist gave me steroid injections into my forehead and in my hip. I started feeling much better after that. And he told me my vision should come back within the next day. The next morning I woke up with an even worse migraine and my dad called them back. I went in for an MRI, and was told to come back the next day for IV fluids. After four bags of IV fluids, my migraine was gone again. He told me that my vision should return by tomorrow. I was hopeful this time since I felt better. The following morning I got up like usual and went to the restroom. I woke up on the floor with the water running and my brother knocking on the door. I don’t know how long I was there, but definitely freaked me out. I got up and told him to get my dad. I opened the door and passed out again in my brother's arms. My brother and dad had to carry me to the couch. Surprisingly I felt much better! My mom came home from work and immediately took me to the emergency room. The nurses thought that I was on drugs because of my symptoms and my pupils were huge.

After about eight hours an ophthalmologist came in and looked at my eyes. Told me that I needed an emergency spinal tap. Sadly I was at an adult hospital and they attempted but failed. I was transferred by ambulance to the children’s hospital an hour away. In their emergency room they also attempted a spinal tap, but failed. I was admitted to the neurology floor. The next morning the neurosurgeon said I needed to have the spinal tap right away or else I could be legally blind or completely blind the rest of my life. I wanted to wait a day for the anesthesiologist to come in. But I didn’t have a choice. Thankfully they were able to get it the third time . 41 cmH2O was removed. I am 19 years old now, and have had the optic nerve sheath fenestration done on both eyes, and a VP shunt placed. I’ve been in remission since February 2020. It’s been a long journey, but I don’t think I would be who I am today if I didn’t go through it. I am officially legally blind and disabled. But that doesn’t stop me from living my life. Thank you to those who read my story!

Pain Chart
No Pain
Pain Level 0	No pain at all, you feel perfectly normal.
Minor Pain Levels	Minor pain levels generally do not interfere with most day to day activities. Able to adapt to pain psychologically and with medication or devices such as cushions.
Pain Level 1	Pain level one means very light barely noticeable pain, like a mosquito bite or a poison ivy itch. Most of the time you never think about the pain.
Pain Level 2	Pain level two is discomforting minor pain, like lightly pinching the fold of skin between the thumb and first finger with the other hand, using the fingernails. People can react differently to this self-test.
Pain Level 3	Pain level three is a tolerable, but very noticeable pain, like an accidental cut, a blow to the nose causing a bloody nose, or a doctor giving you an injection. The pain is not so strong that you cannot get used to it. Eventually, most of the time you don't notice the pain, as you have adapted to it.
Moderate Pain Levels	Moderate pain levels interfere with many daily activities. These pain levels usually require some lifestyle changes but you can remain independent, however, you are unable to adapt to the pain.
Pain Level 4	Pain level four is a distressing strong and deep pain, like an average toothache, the initial pain from a bee sting, or minor trauma to part of the body, such as stubbing your toe real hard. So strong you notice the pain all the time and cannot completely adapt. This pain level can be simulated by pinching the fold of skin between the thumb and first finger with the other hand, using the fingernails, and squeezing real hard. Note how the simulated pain is initially piercing but becomes dull after that.
Pain Level 5	Pain level five is a very distressing strong, deep, piercing pain, such as a sprained ankle when you stand on it wrong or mild back pain. Not only do you notice the pain all the time, you are now so preoccupied with managing it that you normal lifestyle is curtailed. Temporary personality disorders are frequent.
Pain Level 6	Pain level six is an intense pain that is strong, deep and piercing. The pain is so strong it seems to partially dominate your senses, causing you to think somewhat unclearly. At this point you begin to have trouble holding a job or maintaining normal social relationships.
Severe Pain Levels	Severe pain levels, meaning you are unable to engage in your normal activities. The patient is considered disabled and unable to function independently.
Pain Level 7	Pain level seven consists of very intense pain. Much the same as level 6 except the pain completely dominates your senses, causing you to think unclearly about half the time. At this point you are effectively disabled and frequently cannot live alone.
Pain Level 8	Pain level eight is horrible pain. The pain you feel is so intense you can no longer think clearly at all, and have often undergone severe personality change if the pain has been present for a long time.
Pain Level 9	Pain level nine is excruciating pain, so intense you cannot tolerate it and demand painkillers or surgery, no matter what the side effects or risk. There is no more joy in life whatsoever.
Pain Level 10	Pain level ten means unimaginable pain. This pain level is so intense you will go unconscious shortly.