Idiopathic Intracranial Hypertension

Be IIH Aware!

IIH Awareness
IIH Awareness

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.

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!!



Comments 22 comments

grace 19 months ago

I was diagnosed 3/20/2015. I am 6months pregnant and 25yrs old i don't fall into the obese category. I had to have a shunt put in at 5 1/2 months of pregnancy because of the preasure in my eyes being so sever i was going to lose my sight. The swelling in my eyes improved almost immediately and my vision has gotten much better. I was a healthy normal person and then when i got pregnant i had horrible nausea and then the headaches started the doctor just kept saying it was all normal with pregnancy and acted as though i was just over dramatic, i was questioning if i was just nuts myself. I left the dr office again frustrated with being blown off about my headaces again and started having double vision and was told to go to the er where they once again said i had headaces or migranes but held me overnight to double check some bloodwork. They decided to send in a nerologist who instantly said there was something wrong and sent me for testing with an optomologist who diagnosed me with iih. Its nice to finally have the doctors doing what they can to fix and treat this but i don't think my family and friends understand at all what it is im going threw, not surprising when a majority of the nurses and social workers at the hospital don't even know what it is i have or understand it.


Rachel Z Duluth Mn 20 months ago

As I read all these stories, my heart goes out to all. I, too, have IIH. I ignored the symptoms. Thought it was stress, a chiropractic issue, I had no clue. I accidentally found out when I went in to get new glasses. Ended up at the neurologists office, mri and spinal tap done, it was confirmed, I had IIH. I got IIH from MINOCYCLINE:An anti bacterial acne medication, which I had been taking for 2 years. I could have been blind! Come to find out the "cycline" family of medications can cause this. Just the prescribing Dr or pharmacist didn't mention this to me. Always read into any prescription you get. I hope and pray for anyone suffering with this-gets some relief, peace, and answers.


becky 21 months ago

I am deeply concerned.been suffering with untreated iih for sometime now.vision worsens daily.still in a hugh struggle getting my medicad.not sure how long the average person with iih whom is losing eyesight actually ended up blind.


becky 23 months ago

No insurance .so living with untreated iih.over last few weeks.headaches stronger.major blurred and double vision.stiff and painful back and neck.


Mary Baack 3 years ago

I am in the middle of treating something similar to this. But they have also found a cavum septum pellucidum cyst that is abnormally large, I am on Diomax but have kidney stone problems in the past. Two of my neurologists say they would like to do an ICP test if I think the meds aren't working, or the side effects are too bad. Problem side effects are very similar to my presenting symptoms, and a simple cold last week took me out of my game more then what a cold should do. If I do the test and they find a shunt surgery is needed can I get back my old life again? We farm and have 3 small kids one who is autistic and needs his mom to wrestle and play with him. Please I feel like I am barely hanging on even with the meds, can any of you tell me I will be better from anything?


Crystal Harrelson 3 years ago

Thank you all for helping me to know that I am not alone! I was first diagnosed in 1998 at age 18 after being told by my general doc for close to a year that I was fine had the flu or sinus headaches and that I needed to quite trying to dodge school (straight A student). I finally convinced my mom that I was having issues seeing (have worn glasses since I was about 13). I went to an awesome eye doctor who had never seen me before (still see him) and I feel he not only saved most of my vision but my life as well as this had all caused me sever depression. I was immediately sent to the er and a neurologist was brought in. This local nero tortured me! Yes I was young scared and very overweight which he made me feel ashamed of every part of me being. He lowered my pressure so much that I couldn't stand for 2 days before they finally did a blood patch... From there I was sent to a Nero-optimoligist at MUSC in order to fully access how far it had gone. I returned to this hospital almost every other week for lps the after a few months resulted in being satiated for everyone, as the damage to lower back had become so bad that I could no longer endure the pain. As a result of the spinal taps I have 3 herniated disk and some others that have started degenerating. I was also started on Diamox and took the max dose along with Lasix for some time. As the result I became allergic to any meds with sulfa in them as that is a big component in Diamox. Then on Nov 2nd 2000 (could never forget the date as it was also the 1st time I was legal to vote lol). They finally put in a programmable VP shunt. I had no issues for some time after until my 1st pregnancy in 2004-2005, where I would black out often and was put on bed rest for the next 6 months. After I lost a lot of weight took myself to about 170. That is honestly the smallest I ever remember being in my life! I then had only a couple issues here and there that only required meds for short times and that was the 1st time I was put onto Topamax (I call it silly pins and needles meds lol). I then had another bad spell in 2008. I started the whole black our spells again (this was also something that started in the very beginning). I was sent back to MUSC and yet another spinal this one with no sedation. Since my pressure was so high they went and pulled out the big suitcase magnet, which is no longer used except in people like me that have had their shunt for so long, in order to adjust my setting of my shunt. Lucky me found out 2 weeks later that I was 5 weeks pregnant (a blessing as I was told when I was 1st diagnosed not to ever have children and that if I did try I probably would not be able to carry to term or at all). I was put on bed rest 2 weeks later made for a long 9 months. About 6 months after my son was born I then found out I had cervical and ovarian cancer and had to fight that battle. During that surgery I contacted MRSA and almost died before the doctors realized it. Then again I started several meds and one for the shunt Topamax again. I came off shortly after having no issues until here recently. I recently was raped by a police officer and even though I did everything right even went for 2 rape kits as asked at 2 different hospitals he was let off. I started counseling for this immediately and was soon diagnosed with PTSD. Again a list of meds were started. Shortly after this I was driving to meet my boyfriend and his son one night for dinner and started feeling funny like I was going to black out so I went to pull off of the hwy. Apparently I swerved in the process and was pulled over as when I came to I was in a turn lane with blue lights behind me and a cop at my window. To my knowledge I had never had a full blown seizure. This cop however did not see the sign and because I was disoriented and had no clue where I was, who I was or even what day it was he said I was drunk (although there was also a comment made about payback for filing charges on a cop). I was given a total of 4 breathalyzer test all coming back as insufficient sample and no sobriety test on sight. This office also trashed my car and called and texted my bf from my phone saying haha I got your girl you can find her tomorrow at the jail. I was extremely upset as I had no clue what was going on. The second seizure was in the back of his car where my eyes rolled back in my head and I stopped breathing for a short time. Then another during booking thankfully the booking agent realized something was not right and called a medic to me. The cop was wanting me put into general population while having active seizure activity. This was all just Sept 9th. I have had anywhere from 1-5 grand mal seizures everyday since many where I stop breathing for 10 seconds up to 2 mins at each time. I even have them in my sleep and tremored so hard that not only have I woke my boyfriend up but also awakened myself and that they say is hard tremors. I have now done all the test that had to been done to decide what meds to start me on, but will not get them until the 11th. I have also noticed many other things that could be from all of this including bouts of rage and anger towards everyone therefore my new general doc and I decided that since the nero had mentioned and said Topamax would be our first plan of action we would just go ahead and start that for him then he will not be looking starting me on something but rather adjusting or adding to as needed which I was fine with since they have gotten all the testing done. I am sure in about a week that my children will be happy to as I haven't even wanted to be around me because of my anger... See Topamax being a mood stabilizer will help even if they decide it is something else as it is used for so many treatments including PTSD and anxiety. I know that this is a novel and may have more info than you need but hope it helps and how knows someone out there might have a suggestion for me as well, Lord knows I am all ears to them. This illiness as I was told long ago NEVER fully goes away even if you go into remissions as I have several times. Another great benefit to Topamax that I had before and hope I have again is that rapid and long term weight loss as I have tried everything and have been overweight since age 3. That is actually the only factor that they could find as a possible cause to my having this illness.


Sharon7398 3 years ago

I woke up Aug 6, 2007 with IIH. My story is similar to many of you. Long process for diagnosis. Finally my neorologist ssent me to the headache hospital in Chelsea, Michigan. They did in 3 days, inpatient, what 12 doctors couln't do in 18 months. Diagnosis IIH. I spent 2 weeks there, while they figured out my "cocktail". It seemed routine for them. I now take:

750mg Diamox - 3X's a day

40mg Lasix in the morning

10mg Flexeril in the evening

The Lasix counteracts the Diamox effects during the day and

Flexeril counteracts the Diamox effects at night.

My doctors here at home did not understand why it works but I became a mostly functional person after so they support it fully.

I also keep Ketrolac injections handy for when the pin spikes ( a few times a month). It brings the pain down aot in about 20 minutes.

All of these meds are off label, but they work for me. Maybe it could help someone. I feel very alone in this at times and reading these posts feels comforting. God bless you all!!


angelisse-sophia 3 years ago

i personally know wht u are all going througj. i have been messed around by doctors since diagnosis 2 1/2 years go. ive had 20 lps, an lp shunt, an lp.drain, cts, mri ect.... the list i endless. iv had my lp shunt for just over a year and been having overdrainage problems ever since. my lps have all been at a 2 or e. i recently was admitted for my lp shunt removing and a vp shunt fitted but was sent home because of no bed. very frustrating. they have now decided that thy are going to just completely remove my shunt and leave m with nohing in the hopes that my pressure stays.down. is this possible??? my optic nerves ae still swoolen and i have black patch in one eye even with an overdrainin lp.shunt. help please.... sorry fo the essay lol this is a long story short Hahaha xx


lil loco 3 years ago

I'm not over weight I was diagnosed wit this when I was 25 it took the docs 5 yrs to find out wat was wrong I believe I had it longer than that I'm 32 now I still get headaches not as bad but sometimes but my neck n shoulders hurt so bad everyday of my life its like the headaches use to b everyday n why does this cause panic attacks I need people with my condition to talk to


Kimberly 3 years ago

I am the mother of a 17yr old son who was diagnosed with IIH in Dec.of 2012..I am having a hard time getting people to understand the seriousness of this disease... my son so far is on diamox and was in intensive care for 9 days , he had to have the operations where they went thru his eyes and cut window sleths in his optical nerves to release the pressure immediately , he still may need a shunt... his vision is impaired and i don't know how to get it thru like to his his teachers heads that he can not put alot of stress on his eyes, they have loaded him down with work, he ends up with eye pain ,headaches, and his eyes get real bloodshot.. any info or feed back is greatly appreciated !!! and i cant get no one to tell me how long will he be on diamox, and is he ever gonna get full vision back, and what are the chances of it returning .... please anything is helpful at this point .thank you.. "Briar's mom"


ashley 3 years ago

I hate having IIH, dispise it, im pretty sure im not the only one. i had the wooshing in my hear too, it resulted in stenting BUT it wasn't related to my IIH, but the IIH made it worse, if you keep persisting with them they will figure it with a ct scan


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photographybyar 4 years ago from Bakersfield, California

I was diagnosed with IIH earlier this year. I had an LP done, but it didn't really seem to have any long term relief. I'm taking medications but I hate hate hate the fact that people don't understand why my "headache" keeps me from doing things. Before I even knew I had IIH I had started dieting and exercising on my own and had went from 300 pounds to 240, when I got diagnosed with this condition the neurologist informed me I needed to lose weight... I about bit his head off. But long story short, I feel all your gal's pain and I wish there was a better fix for this condition. I still get the headaches although the three medicines seem to dull them to a certain extent, unless I fall asleep and forget them then the next day is hell. I also have the whooshing sound still in my ear, no one can figure that one out... wish they would :)


Tegan 4 years ago

Hey there i was diagnosed with IIH in December 2011 i simply went to get a new pair of prescription sunglasses it had only been 2 years since having my last eye test and i had mentioned i had been having headaches for the last 12 months which i thought was from working on a computer for 8 hours a day or stress but after looking he was quick to inform me i have bulging disks which indicates that i had IIH he was quick to tell me it was because i was overweight he sent me off to a specialst who then did a field test and took photos they were pretty quick to ring hospital to get me to see a neurologist they got me to come into hospital a few days later so that i could have a LP and MRI scan the first attemp for the LP was not successful so had to come back a few days later and have it done under Xray where my pressure was 45 they took some extra fluid off and sent me home about 7 hours later but on the way home i experienced the WORST headache that i have ever had and that came with the nausea and sickness but all that seemed to dissapeared as soon as i laid down but having 3 small children 1 at school and 2 at home also being the week of xmas i couldn't see myself being able to do so the next day i woke up feeling fine had a shower dropped my duaghter at school and went to meet my sister for a coffee well that was a bad idea about 20 mins after getting to the coffee shop the headache and sickness returned and i lived 20 mins away from the coffee shop and trying to drive home was a nightmare!!! I then rang the hospital and told them what was happening and they told me that it was a side effect from the LP and to lay on bed rest for the next 24hrs if it continued still i would have to return to hospital being on bedrest with 3 children and a husband who was working away would have been difficult but thanks to my mum who came and got the kids for me luckily she did as hospital rang me the next morning and told me to go in i then had to have as blood patch which basically means taking bloody from my arm and injecting it near where the LP was done that will form a blood clot and clot the LP hole was didn't close and was leaking the fliud from my head and my brain was basically sitting on nothing which lead the horrific headache luckly that worked and was relased from hospital on xmas eve!! i was prescribed diamox which i can not take i could handle the pins and needles and the metalic taste but i could not handle the constant neusea! I am now currently waiting to see hospital again to get new meds as my last field test came up with a little more loss of vision in my left eye i am also talking to a Dr about lapband although i have had 2 Drs stating that weight does not cause this i am hoping that by losing weight ( which i have tried to do for the last 3 years!!! ) that this will disapear i am sick of people saying that i don't look sick therefore there is nothing wrong with me they seem to quickly change their minds when i tell them that without getting this under control i can aventualy go blind!! i had never heard of this condition until i was diagnosed but have since heard stories of people not getting treated in time and that they went to the Dr and was not found i have told everyone of my friends that if they get headaches go and get your eyes tested because if i didn't then it could of ended badly as i just thought my headaches were either stress or from using my computer at work for 8 hours a day i am so glad i came across this as i was too scared to google IIH


Davia Lewis 5 years 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 transferred 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 supposed to. It pops back out almost immediately. 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.


squidge 5 years ago

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!


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kaiyan717 5 years ago from West Virginia

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.


ARLENE 5 years ago

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.


joanne greathead 6 years ago

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


joanne greathead 6 years ago

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 transferred 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 :(


Wendy 6 years ago

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 an 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, it's a simple blood test and could be the answer you are looking for as it is with me.


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wotserface 6 years ago from UK Author

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.


Michelle Wilkins 6 years ago

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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