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My Experience of Benign Intercranial Hypertension/Pseudotumor Cerebri

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      24.09.2011 23:41
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      A condition thats taught me so much through brute force , impact and shock.

      Well.. let me take you to you back to when all this started. All my teenage life I have suffered with migraines which doctors associated with my PCOS (Poly cystic ovarian syndrome) I took regular pain killers for these. Then in Augest 2011 These "migraines" got WORSE a hell of a lot WORSE. I had servere pressure behind my right eye to the point I would break down in tears , I went to my local Gp who gave me more Migraine relievers and preventers. Little did I know this would begin to mask a serious problem. By September the 3rd I went to the optician thinking , Okay maybe I need glassess, eye strain can cause headaches.. I went in and done the usual quick checks , I had let me remind you of that word HAD 20 20 vision , then the eye inspection came. Left eye , no problem took 5 mins to look , right eye boom 20minutes of intent concentration and close inspection. The optician said "I can see a vessel behind your right eye has hemmoraghed" I want you to go the hospital if the pain gets worse this weekend (this was a Sat) he then said if not I want you straight there Monday. So I thought ill sit the pain out. BIG mistake. By the Sunday (the 4th) The pain graduated to pain , pressure and vomitting and blurred vision , so straight to the emergency department. It was very busy with a 4 hour wait. I saw the triage nurse who said my heart was racing probably due to the pain. She then said she was bleep the on call Opician from home... He got to the hospital within 20 minutes and looked over the opticians letter then examined my eyes. Straight away he said he needed to converse with colleagues then he came back and looked again , he put dye into my eye to dilate the pupil for a closer look . He then said there are 7 more vessels which have hemmoraghed and your optic disk is very swollen. By now I was sensitive to light , vomiting and in tears. He said he wanted to admit me straight away. So at 11pm I was whisked to the ward specializing in problems with the head and neck. Boy did I see some sick people on that ward.. Anyway. The next morning the neurologist came round he again looked in my eye and said he wanted a MRI scan and he took bloods and I got IV fluid due to the impressive amount of vomiting I was doing. They tried tablets/injections to stop the vomiting but it didn't work. Then next morning I was wheeled down to the MRI scanner just as I was about to be put in the machine I vomitted everywhere , over me , the wheelchair and the room..I was given an emergency high dose anti sickness because they NEEDED this scan for a diagnoses , I was told it would either be a brain tumour , blood clot or intercranial hypertention. This scared the bejesus out of me. After a horrible 45 minutes in the scanner I was wheeled back to the ward. 45 minutes later a neurologist came to my bedside with a trolley of hidden equipement , test tubes , swabs and the likes. He said You have to much fluid on your brain trying to escape through your eyeball. (thus causing the swollen optic disc and pressure) He then said " I need to do an emergency lumbar puncture to realise some fluid." I was scared but desperate to be relieved of this horrendous pain. He numbed my the bottom of my spine with a local anesthetic then put the needle in my back he measured the spinal fluid I had 41 excess units (so basically my spinal fluid was triple what it should be at its highest) He then slowely drained the fluid. I did find the procedure uncomfterable but not painful. Afterwards the pressure slowely subsided. The next day neurologist came and prescribed me a medication to keep the pressure down known as a diuretic. Unfortuently I still remained vomiting and in pain for the next 3 days then my symptons started subsiding. It took me another week at home resting until I could withstand light , read and stand unaided. This is a very scary thing to go through. So many unanswered questions and worries for the future .Around 50% of patients will go blind if the disease is not well controlled. I am now seeing the neurology team at the hospital every month. Eventually I may need a permant shunt in my back to constantly drain excess fluid into my abdoman to save my sight and ease the pain. I have a headache every minute of everyday which painkillers cannot help because its not a pain its a pressure. I do know BIH (benign intercranial hypertention) is more common in obese woman , I am admittidly obsese but am now at a slimming club. I hope my story tells people do no take your eyesight and your life for granted. I now have a constant cloud over my right eye. I am lucky enough to be well managed enough to continue working as a nursery nurse and leading a life which I hope to fullfill to the max. Every minute I am given to see and experience life I now embrace. Sorry if I rambled , thank you for reading this far. x Also if anyone has any questions please message me.

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        24.08.2009 01:13

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        There is help people I have been using medical marijuana on the advice of my NeroSurgeon. He is stumped and I continue to be a mystery - I have had this condition for 9 years and I should have lost my eyesight years ago. I can function normally providing i take this medicine twice a day. Please ask your doctors about this type of treatment. I was allergic to all meds such as Diamox, and everything else they could come up with. I lost weight and now it's under control 90% of the time. I still get vertigo from this and I have no shunt or surgeries ever. I understand it's not for everyone but if you are like me this may help. I thank god I was given medical clearence for this because it has saved my life! PS I live in Canada and it's more accessible here.

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        11.08.2008 22:02

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        i was diagnosed with BIH in jan 05 and had all the regular symptoms and was put on diamox and bendroflumethazide and regular lumber punctures helped although by the end of 2007 i was having lumber punctures every 3 weeks so my neurologist referred me 2 a neurosurgeon and i had a shunt fitted in march this year and all has been well since until 3 weeks ago wen my headaches returned and after more lumber punctures a xray showed my shunt had moved to my pelvis, the docs wernt too worried and have left it as they said it would cause more problems to remove it but they have put a new shunt in last week and im recovering fine. i have had 22 lumber punctures and 2 operations to help and they all do but i hope this shunt will not move again.

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        01.03.2008 20:26

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        HOPE THIS HELPS ANYONE

        BIH MY STORY MY 13 YEAR OLD DAUGHTER WAS DIAGNOSED WITH BIH TWO MONTHS AGO. IT ALL STARTED ONE MORNING WHEN SHE WAS GETTING READY FOR SCHOOL SHE BLACKED OUT AND HAD A FIT. EVER SINCE THEN SHE HAS HAD A PERMENANT HEADACHE AND PAIN DOWN HER SPINE. SHE 'S VERY LUCKY HER EYES HAVE NOT BEEN AFFECTED SO FAR , I HOPE IT STAY'S THAT WAY . SHE HAD AN MRI STRAIGHT AWAY TO RULE OUT A TUMOUR, THAT WAS CLEAR THEN SHE HAD A LUMBER PUNTURE THAT TOLD THE PRESSURE WAS THROUGH THE ROOF. SHE JUST HAD ANOTHER LP WHICH WAS THE SAME SHE WAS PUT ON ACLOZOLIMIDE OR SOMETHING TO THAT NAME BUT IT HAS NOT WORKED PRESSURE STILL VERY HIGH . NOW I'M JUST WAITING TO GO TO ADENBROOKES KIDS HOSPITAL THIS WEEK TO SEE THE NUROLIGISTS THERE TO SEE WHAT THEY CAN DO FOR HER. HERE'S HOPING XXXXXXXXXXXXX

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        21.02.2008 22:41
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        info about BIH

        I was recently diagnosed with benign intracranial hypertension. its a very rare disease. only 0.9 out of 100,000 have this condition. its basically excess fluid around the brain thats not flushing out from the body. i am awaiting for a letter to come from the hospital to tell me wots has to happen next which i am not looking forword too. i also had to have a mri scan 3 days ago which wasnt pleasant either as i am closdofobic so it was very difficult for me. i found out i had this condition after i went for a regular check-up at the opticians, i knew something was wrong cos i was in there for a while and had other opticians coming to have a look. he referred me straigh to the hospital and was kept in there for almost a week and was constantly being tested on like a lab rat lol. i hope that helps any1. sorry i couldnt be anymore of a help to u all but atleast ino theres other ppl out there thats going through the same thing i am.

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          25.10.2005 13:24
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          After extremely high intercranial pressures an LP shunt seems to be the answer for me.

          It all started with the headaches for me. Until about 4 months ago I maybe had 2 very mild headaches a year. I'm only 20 and never had anything wrong with my health. 4 months ago I started getting mild headaches when I was tired or stressed. This was weird because I never had that before and I was a bit worried but just thought maybe I was stressed (even though I look back now and I was not anymore stressed at all). After two months of these headaches I had a stomach bug for a few days and with it came a worse headache and extremely mild vision disturbance which I just ignored. Over the next month the headaches were on and off and varied in severity. They got better for a few days and I thought it was all over... until a horrible, quite severe headache started in the base of my neck. (sound familiar???). THis got worse and worse over 2 weeks. I saw my GP who prescribed painkillers. We both thought it was something to do with my neck. Some sort of chiropractic or muscle problem and my GP referred me to a physiotherapist. But i never got that far. THe day before my appointment I awoke with no headache (first time in 2 weeks) but with double vision. I was so relieved to not have a headache and I don't know how but I just thought - double vision?? oh well... it's probably nothing. I went to work for the day. I was meant to be going on holiday the next day and throughout the day at work I became more worried about the vision and thought I would pop into the optometrist after work because I didn't think I should go on holiday with this problem. THe optomotrist looked at me straight away and had me there doing tests for an hour and a half! THis is when i realised something was really wrong. She picked up that the optic nerves were swollen and sent me with a letter to the emergency department at my local hospital. There was a 4 hour waiting time but the eye registrar saw me within half an hour. I had a cat scan and a few doctors look at my eyes. I was made an appointment with a neurologist for 8.45am the next morning. The headaches started again that later that night. At the appointment the neurologist told me I would be admitted to hospital that day and have my first lumbar puncture. It all seemed so fast to me. 24 hours beforehand I had hardly thought anything was wrong. I had my lumbar puncture. The pressure was 59 and taken down to 11. The LP was not fun, but better than I thought it would be. The registrar did it. He had only done 20 but obviously was quite skilled at it. For an hour afterwards my headache and double vision were 'cured', but the double vision returned after that hour. I had an MRI straight afterwards and had no side effects from the LP. After a couple of days the scans came back normal. So no brain tumour (good news). I was diagnosed at this point with Benign Intercranial Hypertension and put on a diuretic. The doctors could not tell me why I got this. Especially so aggressively. I am not obese, though I am slightly overweight but had gained 10 kilos over the past year. There were a few meningitis cells which they think might have kickstarted the problem. What followed was 2 weeks of being in and out of hospital and five lumbar punctures. THe pressure got as high as 82. Each LP was different. One began hurting because it took so long to drain the excess fluid that the local wore off. Another hurt briefly because the doctor hit a nerve. Generally the procedure was ok. THe after effects were also varied. Sometimes I would have a low-pressure headache, other times I would vomit and feel nauseos. All in all, not a fun experience but I liked and trusted the doctor doing them. After the lumbar punctures were seen to be ineffective for me and my eyesight deteriorated the possibility of a shunt was discussed. A neurosurgeon would put a plastic tubing from the bottom of my spine into my stomach to drain the excess fluid. Pressures of 82 are considered very high. Around this time more results came from the MRI. They thought there was a narrowing of some of the veins around my brain and were not sure if this could be causing all the problems or if it was just another symptom. So I had to have a venogram (like angiogram but in the brain). This was pretty awful. I was fully awake. They did one venogram and then I had to have my sixth lumbar puncture, followed by another venogram. THe results were inconclusive. My neurologist tells me there is still debate about it. At this point my neurologist told me she thought shunting was really the only option when the lumbar punctures had obviously not help lower the pressure. So, I was transferred to another hospital and had the operation. There was a lot of risks of infection and the shunt is likely to get blocked (but no-one can say when). BUt it has been two weeks since the operation. At first I had some low pressure headaches which have settled down, and my vision has returned to a passable level. Everything seems to be going well. I went to the opthamologist today again and he says my eyes should continue to improve but it could take months for the swelling to go down completely. Although I now have to live with the problems I might experience due to a permanant shunt, I no longer have to live with painful headaches and double vision. It has been a terrrible couple of months but each day I continue to improve and have the hope that life will be normal for me again one day. I hope my story has been useful.

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          04.07.2005 09:18
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          it took time, but at last I was given a proper diagnosis

          In 1995, I started getting really severe headaches on a daily basis, but they were more severe at night as I lay in bed, so severe in fact that I really thought my brain was going to burst,I began taking ordinary painkillers bought from the chemists, these ranged from paracetamol, ibuprofen, and stuff like 'Migraleve'etc. My doctor sent me to my local A & E department to be checked over, they were at first treating me for 'whiplash' and put me in a surgical collar,and sent me home, but it didn't work, so I was sent back to A & E, this time was admitted for observation and tests, these tests included x-rays, and I was given a range of 'suspected' diagnosises like 'water on the brain' meningitis, and even a suspected brain tumour, after a week I was discharged from hospital yet again with no accurate outcome, by this time I was in severe pain, was vomitting and my sight just went, completely, which was absolutely terrifying,finally I was admitted to hospital again and had more intensive tests like CT & MRI scans and worse of all, lumber punctures, which were agonising, I was in hospital a total of 13 weeks, and benign Intercranial Hypertension was at last diagnosed. am on regular medication now and am doing fine.

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            04.07.2005 04:42

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            My story starts September 2003. I could not see when I drove at night. I went to see my eye doctor. He told me that my optic nerves are swollen and this is a symptom of a brain tumor. He immediatly made an appoitment with an optamologist within a week. He sent me to a neurologist. She ordered a lumbar puncture. I don't remember what my opening pressure was there was so much going on in such a short amount of time. I had 3 MRIs. After all that my optamologist said that I have PTC. He took a very slow approach to my treatment. I was not put on any meds until 1 1/2 years later. He put me on Diamox 1000 mg a day. My vision is not doing as well. It is slowly declining. I can tell each time I take the test. My headaches are not that severe but I have alot of other side effects. Between the disease and the diamox I didn't know which was from which. About 1 week ago my optamologist said my vision test is getting worse. He said that we would have to think of surgery soon. Well now I know that this is serious. I didn't think it was by the way he was acting. So I have learned more about PTC in the last week then the whole time I have been diagnosed.

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            23.03.2005 05:25
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            • "Lack of awareness of this disease"

            As a sufferer of idiopathic intracranial hypertension (IIH), one of the many names this disease has been given, I find that benign is very far from accurate and misleading when describing the debilitating effects of this disease. As is all too common with IIH, I had frequent headaches as a young girl. As a young adult the headaches became more frequent. The headaches were located at the base of the back of my head and radiated through my eyes. I frequently complained of stiffness in my neck and shoulders and tinnitis, a “swishing” and pulsating sound in my ear. I went to the doctor’s office on many occasions, but I was advised my symptoms were due to stress (related to work). The headaches became more frequent and more intense. The only relief came when I was asleep, but I would often wake up with the same headache. My eyes burned and watered with these headaches. I noticed throughout these months of increasing symptoms, a slight change in my vision, an intermittent blurriness I chocked up to family history. Everyone in my immediate family wore glasses. I was going to make an appointment with my optometrist after family visiting from out of state returned home. That wasn’t quite how it all worked out. One Wednesday afternoon after we had taken our family to a local amusement park, we had to climb four flights of steep stairs in a parking garage. Upon reaching our floor, the headache I had had all afternoon intensified and I felt as if I was going to pass out. From that time forward, my headache would not go away. I woke up the next morning in pain. My eyes would not stop burning and the headache persisted. My eyes were sensitive to light and the small measure of relief I managed to feel came only when I closed my eyes. The headache persisted. I had no appetite. I made a same day appointment with an optometrist who told me I had bilateral disk edema. An ophthalmologist confirmed this diagnosis and I was referred to a neurologist for an appointment on Monday morning and given Darvocet for the pain. This ophthalmologist was the first doctor to mention pseudotumor cerebri to me as a possible explanation of my pain. I lay in bed all day Friday in pain and ate nothing. My parents, becoming increasing frightened, insisted I return to the doctor. After a lumbar puncture with a CSF pressure of 36 and a CAT scan, I was admitted to the hospital. I had to be fed intravenously because nothing stayed down and the only medication that had lasting effects for my pain was Morphine. I was advised that I would need emergency surgery on my optic nerve in order to save my vision (Nerve Sheath Decompression). I was transferred to a hospital 50 miles away from my regular hospital in order to find a doctor that had performed this delicate procedure. After the surgery on my right eye, I had completely lost my vision. The doctor recommended I have again surgery, this time on the left eye to save my vision. In the span of one week, I had had three lumbar punctures and two emergency surgeries on my optic nerves. Following the surgeries, I took 500mg of Diamox three times a day and two 5-500mg tablets of Vicodin four times a day. Three months and a severe stomach virus later, my vision returned. I do however have permanent vision loss in my left eye and sensitivity to neon and sunlight. I often wear sunglasses indoors. Had my vision loss not been so rapid, my doctors also advised that I might have needed a shunt implanted in my brain to divert fluid off my brain to my stomach. If my symptoms worsen again, this is still an option for treatment. While most cases of IIH may not be as severe as mine, this is still a debilitating disease to all who suffer from headaches, fatigue, depression, vision loss, etc. Benign is not a word I would ever associate with what happened to me and other people suffering with this disease. Awareness needs to be raised about this disease within the medical community and the general public. For more information about IIH, check out these websites: www.ihrfoundation.org, www.nanosweb.org, www.aan.com, and www.aao.org.

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            23.02.2005 21:18

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            I first new something wasnt right when i was 19,i began to have the most painful headaches.For 4 weeks i put it down to being a young mum who was over tired.Then i was shopping in my local centre when i felt dizzy,and had the most searing pain through my head from front to back and behind my eyes.I almost collapsed.Iwent straight to the doctors the first one i saw,gave me paracetomol,i did try to tell her that i had tried everything in the chemist but nothing worked,she told me to go home and rest.I wasnt happy so i made another appointment to see another doctor the next day.I told her my symptoms she looked into my eyes and told me that she thought i had a brain tumour and that i had to go to the hospital immediately.I went and they thought it was menengitis as by the time i got there i was unable to lift myself of the bed or move my eyes without screaming in pain.For 3 weeks i was passed from hospital to hospital in severe pain,until i ended up at our local general where they had a neuro ward,once they assessed my symptoms they told me what i had.Since then i have had every shunt possible even a trial one was tried but it didnt work.I have had my latest shunt in for 6 years now and it seems to be ok,i am just gled that at the moment i dont have to endure any more lumbar punctures as they are the most painful thing to go through.

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            25.06.2004 03:06
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            I recently found out that I had benign intracranial hypertension. I had always suffered headaches but in the past year or two they became so severe that I had to come home from work and lie down for hours just to get rid of them, sometimes I would go to bed at night with one and wake up the next morning and I would still have a headache. No painkillers worked. The road to finding out I had bih was long. It started when I went to a spec savers optician to get a routine eye check. They noticed that I had slight swelling of my optic nerve and they suspected that this could possibly of been papidoliema(a very serious diseases of the eye which in some cases can leave you blind). They referred me to an ophthalmologist who examined me and she then was going to send me to the eye and ear hospital to get tests done, a field vision test and a fluorescent angiogram. Due to the increasingly long waiting lists for these tests unknown to me, the optomoligist rang my gp and had a discussion to me. I arrived home from work the day of my visit to the optomoligist to find my doctor at the door now my doctor is not that great a doctor so you can imagine my shock to see him. He had a letter for me and he told me to go to tallaght hospital accident and emergency with the letter. So the following day I did that. after spending six hours in the a and e waiting room I was eventually seen by a foreign doctor who couldn?t speak very good English and he could not understand why I was in the hospital he thought air had a bad headache and that was why I was there. So after another of hour of waiting and frustration with the doctor I was seen by a female doctor who read my doctors letter in which he had suggested that I had bih and she said that I would have to go for some tests. To my absolute horror they informed me that I would have to stay in hospital. So with nothing seriously wrong with me I was in hospital on a trolley in the corridor of accident and emergency. After a day on the trolley and a After seeing only a doctor once I was moved to a ward. There I was seen more and the doctor said he was going to send me for a cat scan. So the following day I had my cat scan and I didn?t find out the result of that till the following day. 4 days and still in the hospital the doctor told me he was going to refer my case to the neurologist. He came to see me the following day and he said that I would have to get an MRI scan done but the symptoms suggested I had bih. You see over the past year I had increases weight by over 2 stone. So I had the MRI scan done which was a scary experience and they said that this showed excess fluid on my brain. So they said that they were going to do a lumbar puncture. So a week in hospital and finally something was happening. I got a very nice intern doctor her name was Sinead and she explained to me what the lumbar puncture was. A big needle going into your spine to measure the pressure is what it is in plain English boy was I scared. So I got that done and the outcome of the lumbar puncture was that the pressure was 37 and normal pressure is 13-18. So my pressure was very high anything over 22 is bih. So they drained off fluid to bring the pressure back to normal. I was told to lie down for four hours after it. I said to myself no way a m I lying still for four hours boy do I wish I has that night I was in so much agony with a headache I couldn?t move. I was so dizzy and I just kept getting sick. The following day I went home and for a week after I was in bed with the headache the only way to relieve it was to lie down. When leaving the hospital I was put on diamox tablets which reduced the fluid thus reducing the pressure and I was told that the main cure was to lose weight so at 5ft and weighing 15stone I had a lot to do. Two months later I had to go and get another lumbar puncture done this time the pressure showed 27 it was down thanks to the tablets and weight loss which I had to do they again took fluid off to reduce it back To normal. To my relief I was fine after the lumbar puncture and was able to go home and I had no headaches. Last week I got my third lumbar puncture done and the pressure showed 22 so I am on the border line now. Again they drained fluid to bring the pressure back to normal and to my horror in the hospital I was moved by nurses so again after my lumbar puncture I was still in pain and getting severe headaches, another week in bed. So that is where I am now. I have to go and get another lumbar puncture done in 2 weeks and I am going to lie still for four hours after it and I am hoping and praying that the pressure is normal so my ordeal will be over but as the disease can come back I will still have to take the diamox tablets which have a nasty side effect ( pins and needles constantly and a horrible metallic taste in your mouth which means drinking fizzy drinks is a no) and of course the main thing is to lose weight so that?s my story I hope it helps people understand benign intracranial hypertension some more as it is a rare and nasty disease. I Hope my edited version is better thanks to all for the advise.

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              03.06.2004 19:16
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              • "worrying that antibiotics could cause it "

              It all started with a headache, however these gradually got worse. I was taken to my GP, who prescribed migrane tablets (because there is migrane sufferers in my family) But, these didn?t seem to help, so my GP prescribed stronger medication. They still had no effect, in fact my headaches where getting worse and they were there every day. I am only 13 and my headaches were affecting my schoolwork. My parents arranged for me to have an eye test, just incase I needed glasses and this was the cause for my head pains. The optician clarified that my eyesight was normal and that bad eyesight was not the root of my headaches. However, he did have some alarming news. He said that the discs (nerves) at the back of both of my eyes were extremely swollen and that I needed to go straight to the hospital (for a scan) as it was urgent. This really frightened me, what if it was something serious? The optician said that he didn?t know what had caused the swelling, but I needed to be taken to the GP, so they could refer me to the hospital. The doctor?s surgery wanted us to go straight there to see the emergency doctor. We were seen immediately, and the GP was on the phone to the hospital instantly. They confirmed that I needed to go to hospital the next morning for an emergency brain scan. At this stage me and my family were very worried. I asked the GP what a simple cause of the swelling could be, this is when the doctor said: ?Well, there isn?t really anything simple that this swelling could be. It is very serious and is putting pressure onto your brain, which is why you have a very high blood pressure. It is probably a brain tumour? I couldn?t believe what I had been told. I was suffering from migranes and having an eye test one minute, then being told that I had a tumour the next. It was a very worrying and stressful time, both for me, my friends and my family. It is hard not to think of the worst. I was taken to the hospital the next morning and spent a considerable am ount of time discussing my headaches, informing them of all the medication that I am on and describing any other symptoms that I had been experiencing. Many tests were carried out on me and I was then told that I definitely needed to have a brain scan. The waiting list to have a MRI scan is usually very long, meaning that most people have to wait 4-6 months to have a scan. But, the hospital informed me that my scan was vital and it would be in the next few days. At this stage I still thought that I had a brain tumour. Another doctor heard us discussing my case and offered to look into my eyes. He then confirmed that the discs were swollen. He asked if I was on the pill, because it can sometimes cause a reaction like this. But I wasn?t on the pill. He then said that acne tablets could sometimes cause this swelling as well. I had already told members of staff that I was taking a low dose antibiotic for my acne, but nobody had picked up on it. He asked me what type they were. For the past year I had taken an antibiotic called tetralysal and had recently changed over to a tablet called Minocycline. He checked in his medical book and he said that antibiotics in this family could sometimes cause a very rare long-term effect. He said that I still needed to have the scan to confirm that it wasn?t anything more serious, but he was very sure that it was the antibiotics causing the swelling. He said that it only affects very few people and is a quite rare effect that occurs after taking the tablets long-term. I went for the scan and was told that there was no bleeding, tumours or anything serious. All I had to do now was return to my GP to change the medication. The GP said that is very hard to find an affective antibiotic to treat acne that is not in the same family. He said that he had heard of the condition, which is called Benign Intercranial Hypertension, but he had never actually seen it in anyone. It is frightening that an antibiotic can cause such severe effects, and t o be told that it was a brain tumour was extremely worrying. It will take about 6 months for the swelling to go down completely, which is when my migranes will hopefully vanish. I have also been experiencing a whooshing in my right ear (almost like the ocean/waves) constantly in my ear. This is another symptom of this condition that will hopefully disappear in a few months. It was a great relief that I didn?t have anything too serious, but to think that taking tablets can cause swelling and pressure on my brain is quite terrifying.

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                07.01.2004 14:27
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                • "the not knowing "

                Benign Intercranial Hypertension Hannah?s Story For me it all started with the headaches, mild headaches behind my eyes and at the back of my head that never seemed to go away. Over a two month period the headaches began to grow is severity. Although at this point, I did not feel they were enough to go to the doctors. During the time when I was having these headaches I noticed a pulsating feeling under my left eye, I put it down to stress. Then one day while driving my sister to school I lost the vision in my left eye for a period of about 10 minutes, naturally as a pretty healthy 20-year-old at the time this scared me terribly, but still I didn?t see my doctor. Over a period of two weeks I lost vision in my left eye again and had periods of blurring in my left eye. Still I did not see a doctor putting the headaches and vision problems down to stress. But then waking up one morning my right eye was pulsating and my vision in that eye was blurry. After dropping my sister at school I went to our local Optometrist, he did quite a few tests and told me that my optic nerves behind each eye were so severely swollen he was shocked that I could see at all, he said what he thought I had was severe papal oedema in both eyes, he told me to go straight my GP who could forward me on to an opthemologist, this I did and two days later was sitting in the eye specialist waiting room with my eye?s full of drops, waiting to be tested. He too agreed that I had severe papal oedema in both eyes and said that he believed that I had a rare condition called Benign Intercranial Hypertension (BHI), he referred me straight away to see a neurologist. After waiting five weeks for my appointment to see my neurologist I was told that I should have been told to see him immediately. He to believed that I had BIH and booked me in for a Lumbar Puncture (LP) the following morning, he also prescribed me with a fluid tablet Diamox, to help try and reduce fluid retention in my body. Unfortuna tely for me my body goes into shock quite easily as we found out after the first failed LP, since then I have had to have them under x-ray to try to minimise the stress put on my body, this to however doesn?t always work, as on numerous occasions I have been unable to walk properly for several days afterwards. On several occasions I have had Cerebral Spinal Fluid (CSF) removed, which has left me with Low Pressure Headaches, which basically means the doctors are removing fluid from my spine and my body needs time to adjust to the changes in fluid pressure hence the low pressure headaches. Since the time of my diagnosis I have found that I can?t remember small things like dates and times, and even occasionally peoples faces or names, although this has only happened a couple of times, I have also found that on occasions my hearing has been affected, were it almost feels like my ears are submerged in the ocean and I?m listening to the waves. Unfortunately after my last LP I became incredibly ill, when I got home from hospital I did what I always did which was to go and lay down and try and rest, this I normally did for maybe the rest of the day and maybe the morning after the LP, but this time my Low Pressure Headache was different, were normally I would feel the pain around my eyes and at the back of my head, this time is spread throughout my head and down the top of my neck. I couldn?t move without felling severe pain throughout my upper body, I couldn?t stand light or noise, I could not eat or drink as anything I tried to eat or drink promptly came straight back up, I was also suffering hot and cold flushes. After the first day of this mum called my neurologist who pretty much dismissed her and said it was just a low pressure headache, the following morning, three days after the LP in which time I had not eaten or drunk anything and could not even take pain-killing medication without bringing it up again, mum rushed me to my GP, he gave me an anti-sickness i njection to hopefully try to stop the vomiting so that I could take fluids but told mum to watch me closely and is she felt I wasn?t improving get me to hospital. The injection didn?t work; I was still vomiting the next morning. My mum and sister tried to help me out of bed to put me in the car to take me to hospital but my body started going into shock, they called an ambulance. Half an hour later I was entering the emergency ward at the hospital. After what felt like hours of waiting the doctors started giving me IV fluids, even having the fluids pumped into my body it was going into shock, my hands almost became spastic in look, almost claw like. After having three litres of fluid pumped into my body in a period of one hour the doctors sent me home. Thinking back now, had we got to the hospital the day after we did the outcome of the whole experience could have been incredibly different, I was that sick that waiting one more day I could very well have died. The following morning we went back to my GP who gave me medication for the headaches, that were still so severe it felt like my head would explode. Slowly after being so severely sick for eight days, having not eaten or had anything to drink also for eight days I started getting better. I lost a whopping 5kg of weight in just 8 days, and although I?m still having headaches and know that I still have to have even more LP?s I?m glad to say that this whole experience has taught me something. I?m alive and lucky to be so, life is a very fragile thing indeed and I am going to use every minute now to make the most of the time I have on this earth, who knows if I may get sick again like before, hopefully not, as even today I am still recovering. But all I know is that without the love of my mum and dad and two sisters and grandparents there is no way I would have had the strength to pull through. I hope that by reading what I have been through will help others to get through their similar experiences. Finally all I can say to you is if you have similar symptoms, go straight to your doctor, this condition can cause permanent blindness and in some cases it can be fatal. You know your body, if you think there is something wrong don?t do what I did and put it down to stress, hopefully that?s all it will be but I know for me I will never be putting anything down to stress again. Learn from your body, it knows what?s going on and if something?s wrong it will tell you, don?t ignore the signs like I did. I wish everyone the best of health in their lives.

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                  27.06.2003 00:25
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                  • "lumbar punctures&drugs"

                  before i got B.I.H i was normal. just like everyone else, i went out at weekends drinking and stuff. now i cant drink alcohol or go to work either, all because of this disease and im only 22. when it all started id just got a new job and had been working there for about three months. then i started to get headaches. at first i thought they were just migraines so i took painkillers and tried to forget about them, but they got worse so i went to my g.p. he thought they were migraines and he gave me betablockers and told me if the headaches didnt improve in a month to come back. after about three weeks the pain wasnt any better so i took a couple of days off work to see if sitting quitely in tthe dark would help, it didnt. i woke up the next day to find i couldnt see. i could ditinguish between light and dark but that was all. i went to see my g.p again. this time i explained about my vision and he sent me straaight to hospital. once there i had a CT scan and an MRI scan. then i was transfered to a differant hospital. the news that i had B.I.H was given to me by a neurologist there and he told me i would need a lumber puncture. since then ive had alot of lumbar punctures about 14 i think, and i also take 6 diamox a day and 40mg of amitryptiline. some of my sight has returned but ill never be able to drive. i have a visual field test every three months to make sure my eyes dont get any worse. i still get headaches on a daily basis but my neurologist is supportive and tries out differant ways to help with the pain. i hope this is useful to someone.

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                    21.05.2003 21:50
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                    First came the numbness, a tingling sensation down one side of his face. His speech was slurred and his vision disturbed.Then the final piece of this far too often occurance, A pounding headache draining every little bit of energy, intervals of sickness, and then a long sleep. Only to wake up to find the Pain still presant. These were the events that led to the diagnosis of Benign Intercranial Hypertension. also present was Papilla Odema, The pressures had gone so high that they had started to fill up the disc at the back of the eye,. Then the treatment began Lumbar Punches, In order to find out just how high the pressure was in the head, I was told it was 40, and that normal pressures were about 10.They were able to drain some CSF(Cerabal spinal fluid)but in order to keep the pressure down the procedure needed to be repeated and it was, every fortnight. Also medication was described to help keep the fluid down. This is called Accetazolomide it is given in this case every eight hours, at a dose of 2x500mg tablets, It can sometimes cause tingling in the fingers at high doses, but I am told that taking Bicarbonate of soda in a glass of water helps with this simptom. Anyway seven Lumbar punches Later and the use of Accetazolamide the situation seems to be under control, for the moment at least, And having missed almost a year off school through this illness I am pleased to say that he can now return, You see all the above are the exsperiences of my child who has enduerd so much, But that is another story!

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