Idiopathic Intracranial Hypertension
Be IIH Aware!
Not Just A Headache
Idiopathic Intracranial Hypertension (IIH) which can also be called Benign Intracranial Hypertension and Pseudo-tumour Cerebri, is an incurable Neurological condition or disorder, that affects any age, male or female. It's caused by the raised pressure of cerebral spinal fluid(CSF), which is the fluid that surrounds and protects your brain. When the CSF builds there is nowhere for it to go, as there is little space between your skull and brain. When this happens it results in severe headache, and the pressure on the optic nerve causes the visual problems. These visual problems can if not treated lead to blindness.
So now you know this.......
.....imagine waking up one day with a headache, which goes on and on for days, even weeks with no relief or respite. The kind of headache that makes you wince when you move your head and eyes, causes neck and shoulder stiffness, and also affects your vision. Sounds like Migraine you may think, which is understandable, as many sufferers of IIH are often misdiagnosed at first with Migraine. However, it's the worst headache ever, and extremely painful which means over the counter painkillers and medication for Migraine or ineffective. I must mention too, the constant whooshing noise in the ears, which is a form of tinnitus.
Diagnosis is made by the sufferer having to undergo a lumbar puncture, which you may or may not know involves inserting a long thin needle in to the lumbar area of your spine, to drain off excess fluid. This procedure is also done when diagnosing Meningitis. There are also MRI and CAT scans as well as visual field tests to check peripheral vision. Initially when diagnosed the symptoms can be treated with medication, one such medication is Diamox, but it does have some very often unbearable side effects. When the pressure gets too high again, a lumbar puncture is again performed to bring it back down.
When the pressure threatens vision, and isn't able to be kept stable by the usual methods, surgery is then opted for. The surgery will involve inserting a catheter from between a ventricle in the brain to the abdominal cavity known as the peritoneal. This is called a VP shunt, although if the ventricles aren't wide enough to allow this, a catheter from your lumbar area to the peritoneal is done, this is called an LP shunt. By doing this it will prevent the build up of the CSF, by draining it away where it is reabsorbed into your body to then manifest as tears and sweat.
Remission can happen but there is no way of knowing how long it will last. Sufferers are encouraged to diet and exercise, and the women to stay off the pill which has oestrogen. In hard to manage cases sub-temporal decompressions can be performed, which exists of removing areas of skull over the sub-temporal lobe of your brain to create space for the excess CSF. Extreme though it sounds it is guaranteed to save an IIH sufferers vision.
What many people don't realise is that this condition is a very hard taskmaster to live with, I call it that because it dictates nearly every part of your life. How do I know this? I have been a sufferer of IIH since 1989, and at first had the usual medication etc. until 2001, when I began to lose my vision. After many lumbar punctures and increased medication I had an LP shunt, unfortunately I permanently lost my peripheral vision and depth perception. The shunt did alleviate my symptoms and halt the loss of any more vision, but there was a downside. It affected my mobility which has not really recovered.
I had a shunt revision in 2006 to a VP shunt, and later went on to have two sub-temporal decompressions. So I have those and the VP shunt. The shunts can get blocked and/or infected, and I've experienced both. There are various infections a shunted IIH sufferer can incur, like Meningitis, Ventriculitis, MRSA and Staphylococcus Aureus. All are treated by IV antibiotics and yes I've had those too! It is a worry but in the long run, a small price to pay for relief, is the way I see it. I've been lucky that my Neurosurgeon and his team were extremely diligent and helpful with my treatment, and it is because of them I lead a relatively good life now.
I was lucky when it came to my medical treatment and outcome, but not all sufferers of this condition find themselves in my position.
Awareness and the need for research of this disease is an important issue when it comes to IIH. It is imperative to the IIH community that it is recognised as the chronic and debilitating illness it is, through all aspects of life such as employment, insurance policies, health insurance and benefits etc.
Many sufferers of this condition suffer not just from this disease, but from financial and social hardship that it causes, especially as it can affect any age, gender or creed. It is highly misunderstood with sufferers being labelled lazy, depressed, and in some cases a hypochondriac. It is what is termed an "invisible illness".
The IH Research Foundation are the only non-profit organisation in the world who are totally dedicated to raising awareness and finding a cure for this disease.
IHRF is a tax-exempt 501 (c) (3) non-profit organization, led by committed volunteers. Over 90% of our income comes from individual donations, mostly from people with chronic IH, their families and friends. To conserve as much money as possible for research, IHRF depends upon the help of generous volunteers at every level. http://www.ihrfoundation.org/
By donating and supporting the IHRF you can help other sufferers and stories like mine could be prevented.
- The I Have IIH Foundation
We want to help you to adapt to life with IIH, and give you back your confidence and wellbeing by teaching you how to focus on the positive sides of living with this condition.
- Welcome to the Intracranial Hypertension Research Foundation | Previously Called Pseudotumor Cerebri
Dedicated to finding a cure and raising awareness for IIH
- IH BRAIN PAIN TEAM
The IH Brain Pain Team is an international team created to raise awareness and support for the Intracranial Hypertension Research Foundation.
In the 20 years since I was first diagnosed, things have moved on as you would expect, but back then I had no support group or organisation to turn to, but wonderfully today, more information is available on-line for someone newly diagnosed, as well as a wealth of dedicated support groups and sites. These groups are connecting the IIH people to each other, so they can share their experiences, battles, victories and frustrations. All of them are raising awareness, some if not all are raising funds for this condition, to help with research and treatment and for it to be seen as not "just a headache".
These groups are invaluable to an IIH sufferer, as many of us succumb to anxiety, panic attacks and depression. The long-term effects of IIH are not just vision, but memory problems, fatigue, and an increased reaction to atmospheric pressure. We have to check to see if we are allowed to fly for instance, or in some cases go on certain fairground rides. Things that many of us take for granted. We are constantly frustrated by the things we like you, once thought nothing of,we can feel isolated and misjudged. Jobs that we enjoyed, hobbies even housework have become things we can only do in moderation, some not at all, as each sufferer is different, depending on their stage of IIH. So if you come across someone with IIH, remember it could just as easily be you, but also remember that until THEY or THEIR doctor state otherwise, they still have a lot to give in employment,and of having a life, even if it has to be adapted. They are people who deserve to be seen and treated like everyone else, they have an illness but the illness doesn't necessarily define them. So be IIH Aware!!