Idiopathic Intracranial Hypertension
82Be 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 no where 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 task master 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.
- I Have IIH
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!!
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Hi, three years ago I went to my GP with severe headaches and blind spots, I was sent home with paracetamol, the next day my vision had become very blurred and became worse with sudden head movement.
A Lumbar Puncture showed readings of 96, once the fluid was drained I felt relief for just a few hours, repeated LP showed my pressure was returning immediately. After 3 weeks in hospital and daily visual field tests I was given a shunt. My headaches remained and I became quite sick. It was soon realised my shunt had failed, I ended up staying in hospital for nearly a year with some weekend breaks home, all in all I had 9 lots of brain surgery over that year! I thought it'd all never end and it seemed every shunt was going to fail. Thankfully nearly 2 years have passed and my shunt has remained in tact and generally leaves me pain free. At times it seems to get blocked as many of my symptoms come back, but it tends to right itself after 2 or 3 days of insane pain. I probably should go to my doctor at these times but I'm too afraid of having another lumbar puncture ( I had over 20 of them whilst in hospital). I don't tend to talk about the impact having IHH has had on me, so was pleased to find this site, ty.
On a plus side, I used to have a severe phobia of the dentist, now it doesn't faze me one bit! I've given birth and suffered chronic kidney failure for many years before having it removed and let me say there is not a pain that is as severe as a headache from IHH, so if you know someone that suffers IHH please do not just see their pain as a bad migraine!
I got diagnosed by an Er doctor back in 2008. After 4-5 failed attempts at hospitals, I finally found one that got it together. In less than 6 hours I was diagnosed and starting to feel batter. I take 250mg acetazolamide 3 times a day and the side effects are sometimes unbearable. My biggeset problem has been pain and nausea, the nausea is ridiculous. I got diagnosed at 24 while 4 months pregnant, so I actually thought the nausea was pregnancy, but in over two and a half years I have not went one day without getting sick. Being a landscape arctitech and horticulturist, I have found I can no longer dtay in the sun for an hour or so at a time. My son is 2 and they don't understand why mommi hurts all the time. But I will say something, having this disease, my pain thresh hold has improved greatly. During labor, my head hurt more than a natural labor did. Worst pain, my butt. I am glad some have found relief, I hope one day we can beat this thing. Or at least live a bit more normally. Does anyone feel aggitated all the time, or maybe it's the constant pain. God Bless you all.
HI, I was diagnosed with IIH on December 2010. My problems started in March, 2010. My symptoms are like a massive hangover with me constantly vomiting. My vision started to get blurry, seeing double, things that appeared far away were actually at the tip of my nose. In-spite of the IIH I also have Optic Nerve Atrophy which developed because my glaucoma was left untreated. The optic nerve atrophy makes my cranial pressure hurt even more. I had 6 lumbar punctures so far in the past month. It is very depressing because sudden motion makes my head hurt even more and I can't go outside and play with my daughter or work. Dr's thought I needed to lose weight but after and MRI and MRA results showed that I suffered head trauma at one point on my life. Only a head injury in my case could have caused me to get IIH.
oh also i forgot to add i am very over weight and all the doctors have said to lose weight which i was and am trying to do before i was diagnosed with iih im on a waiting list for a gastric band trying to get funding my neurologist said he would write a letter to support my application for funding as iih is now affecting my eyes and they want me to lose weight as quick as i can
hi i have only recently been diagnosed with iih i first noticed eye problems and my gp sent me to the eye hospital with turned out to be swollen optic discs. i wasn't getting any headaches or nausea at first that started about a week after.
on a routine check up appointment at the eye hospital they told me i had to go and have more tests i thought i was only going to be there a day i ended up being at the worcestershire royal hospital for 6 days having a ct scan and 2 failed lp's which they then transfered me to the Q.E hospital in birmingham to have an mri then i had to go back to the Q.E the nexted day for an x-ray guided lp which they still had problems with as the needle wasn't long enough so the DR went a bit higher which can cause more problems. eventually they did the lp which had an opening pressure of 40 im now on diamox which i get symptoms from as well buti do think my headaches are coming back and i still have sensitivity to light and a new symptom of noises in my ears too. i only had my lp a week ago so it doesn't look like it kept the symptoms away for long :(
Hi, I have had IIH, it came on without warning and i am lucky to say clear of it now, i no longer take that terrible Acetazolemide. I Had a first opening pressure that they guessed at 84 and they were surprized i could still stand up and talk, i had a further 5 LP's in four months and that was on the tablets. My local health authority were absolutely Rubbish so i asked to be sent to the Neurosurgeons at Barts in London. After a long time of tests i was due for a Lumber Shunt on the friday morning when a neurologist came to see me and said and i quote "on a unrelated matter you have a B12 Deficency that we will treat while you are here", I researched this myself and found a doctor in Birmingham who had linked Anaemia with IIH, i am a size 14 so not massively over weight although the doctors kept telling me that was why i had it. My partner spoke with the Doctor in Birmingham who told us to get the B12 treated and that was probably why I had IIH. After having to fight the doctors, i was treated for the anaemia. I would like to say that the Neuro surgeons were absolutely brilliant but the neurologists were rubbish and would not believe that it was linked, i managed to get the surgery stopped and had a b12 injection. I later found out that my B12 was 0 and it would have eventually killed me. I have to have regular injections even after the intial 12 weeks of injections every week. I am very disappointed that after 10 admissions to hospital, 6 LP all of very raised pressure and 6 months of being overdosed on acetazolamide, the doctors failed to find the B12 problem and treat it. I have been IIH free for 9 months, i had to wean myself off acetazolamide because the doctors had NEVER HEARD OF MY CONDITION and i now suffer from weather related headaches and migrains, caused by the fact i was so bad so quick and left. I am slowly getting better but certainly do not have IIH anymore, my doctor and eye specialist can not believe how well i am doing, now with hindsight i had symptoms of the B12 problems for over 10 years included spinal degeneration, all of which are getting slowly better. I totally know what you are going though and guess i am one of the lucky ones that is now free of it. My advice to anyone who is diagnosed with this condition is to be B12 Checked, its a simple blood test and could be the answer you are looking for as it is with me.
thank you so much for taking the time to read this and for leaving a comment.
I know exactly what you mean Michelle, what sometimes makes it harder is trying to explain it to someone, and they see it just as a headache, and if they do go on to find out anything about it, they see it as just another ailment to add to overweight people which is unfair.
This is a really useful insight in to this condition as I like to refer to it. I was recently diagnosed in January with the acute form of IIH and have since had 4 lumbar punctures. Made worse by the fact I am difficult to LP each one is now done under xray guidence. This condition is the most challenging thing to cope with when you are in the most immense pain and no pain killers seem to make any difference and my 2 lovely young boys are running around and just don't understand that I physically can not get up and play with them. I haven't experienced the noises in my head but I do get the sensation of being on a boat, swaying.....it's very strange. The nausea and constant feeling of a hangover!
I am in the process of trying to lose weight but as any fat person knows it is hard but with the idea of losing my sight it is coming off quicker then normal.
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Davia Lewis 9 months ago
I was diagnosed with IIH in 2007. After several visits to the local er with different more severe symptoms, i finally went to an opthamologist who imeediatly knew what the problem was. followed by yet another trip to the er where they did the lp my pressure was so high fluid was shooting out of the top of the needle. The dr looked at me and said i should be dead or at least in a coma. then he asked how i was still walking around, my response: "I have 3 little girls that need me." from my local hospital they transfered me to a bigger one where they did emergency brain surgery to release pressure and implant a shunt.I was left with less than 80 percent of my vision. no peripheal, terrible night vision, no depth perception and with some colors, colr blind. I am very grateful to the team of surgeons that saved my life and the vision they could. At least i get to still see my childrens faces averyday. Recently, i have started tohave seizures, which they say is a long term side effect to IIH. I also think i may need to have my shunt checked. this past week has been terrible. Headache everyday, my neck hurts, im vomiting, and the little thing on the shunt that you can push in is not staying in like its suppose to. It pops back out almost immediatly. i am currently without a neurologist of any kind. my neurosurgeon moved and no one seems to know where she moved to. it is very frustrating. i dare not go back to the er that put me through hell. i recently had foot surgery, and while i was laid up i gained about 30 lbs. now i am trying to lose it, but its not easy. I also have wolf parkinson white syndrome, severe arthritis, 2 bulging discs in my back and one in my neck. Along with a nodular growth in my stomach. Took my blood pressure today, it is usually low, like 116 over 60. today it was 149 over 90. i am getting really scared, but tryin to hold it together for my kids.