One womens story against an a invisable illness

One womens story against an a invisable illness

Friday, 11 February 2011

Idiopathic Intracranial Hypertension (IIH)

Hey everyone,

I want to talk about Intracranial Hypertension. Intracranial Hypertension isn't widely known among the spoonies of the world, let alone the non-spoonies but its something that can affect anyone, at anytime, at any age. Idiopathic Intracranial Hypertension (Idiopathic means of "unknown cause") is a serious neurological condition in which high cerebrospinal fluid (CSF) pressure within the skull that causes unbearable headaches, swelling of the optic nerves and can result in loss of vision or blindness. Diagnosis of IIH is made by ruling out other neurological conditions that might have the same symptoms. Neurological examination is normal (apart from my case because of the underlying neurological problem) apart from the presence of swollen optic nerves although it may not always be present. Definitive diagnosis of IIH is made by performing a lumbar puncture which shows the pressure of cerebrospinal fluid (CSF) to be above 25cm/H2O.

 No-one knows what causes IIH, although blood clots in the veins draining the brain can cause Intracranial pressure. Withdrawal of steroids, large doses of vitamin A or intake of foods containing large amounts of vitamin A, use of body building type steroids and possibly, hormonal changes and certain drugs can also cause raised intracranial pressure. Caffeine and stress have been said to play apart in Intracranial hypertension. The most common symptoms of IIH are: severe headache, papilloedema (swollen optic nerves), temporary loss of vision, transient visual obscurations (blurred vision), double vision and decreased visual acuity, pulsatile tinnitus ("whooshing noise" in the ears in time with the pulse), and pain behind the eye and with eye movement. Other symptoms reported by people with IIH include: nausea, vomiting, fatigue, photophobia (dislike of the pain caused by bright light), problems with balance and spatial awareness, aphasia (difficulty using or understanding words), disorientation, loss of short-term memory (sometimes long-term memory loss), confusion, feeling "spaced out" and lack of depth perception (e.g judging depth of stairs, steps, curbs). Also people with IIH may find unfamiliar (and even familiar) places, traffic, confusing and overwhelming. 

Treatment of IIH is the most commonly prescribed medication acetazolomide, which is a diuretic. It's thought that it acts by reducing the production of CSF. It's relatively safe but nearly all patients have tingling of the fingers and toes as a side effect of the medication, and patients are advised to increase their intake of potassium as acetazolomide drains the body's stores of potassium. As well as the standard acetazolomide, a sustained release form of the drug is also available, 'Diamox SR', and many patients tolerate this form of the medication better and find that the side-effects are reduced in comparison with the standard form of acetazolomide. Another diuretic commonly used is frusemide. Sometimes a short course of steroids may be given. Various analgesic drugs (painkillers) are used to treat the pain associated with IIH, with varying degrees of success, but as with all painkillers care must be taken as many drugs can be addictive and some can have severe side-effects. Some people need repeated regular lumbar punctures (LPs) to remove excess CSF, or if symptoms don't improve on medication, surgical treatments may be considered. 

My experience of IIH  have been that I had really intense headaches which made me puke, sleep all the time, have no idea where i was or what time it was and because of the sickness I couldn't take my pain killers so I was in extreme amount of pain. I spent days in my bed watching kids t.v (although my kids weren't in the room with me) to this day I have no idea what I watched. I began having vision problems in the sense of double and blurred vision, my eye began to become really painful and felt swollen (although you couldn't see the swelling), my head hurt like I had hit my head of the wall or the floor, I couldn't even lay my head on the pillow.

I ended up in A&E so many times begging doctors to help me with the pain and my eye, they all turned me away and told me to go to my GP. What they should have done is checked my eye seen that there was swelling in my optic nerves, asked about my other symptoms and sent me for an emergency lumbar puncture. Instead I had to wait six months of my symptoms getting worse to have a lumbar puncture (which was ordered to rule out other neurological problems). The lumbar puncture showed that I had high CSF pressure yet I didn't recieve acetazolomide till the 7/02/11.

Acetazolomide has been prescribed to me to reduce swelling in my eye and to reduce the pressure in my brain and spine. In this last week I have been taking them I have felt awful! I have felt sick and because of the sickness a loss of appetite, I have had a headache, a burning pins and needles feeling in my hands and feet, everything tastes disgusting, drowsy and a constant thirst and need to urinate, put all these side affects with the other symptoms I have, it hasn't been a very good week!

I feel like I'm in a catch 22 as I have to take these tablets and up them to 500mg twice a day to save my eye sight. If these tablets don't work or I feel I really can't cope with them then I will have no choice but to have surgery to save me going permanently blind. This makes me really angry as if the doctors had caught and treated me early on I wouldn't be in this position. My mum has Intracranial hypertension as well and goes to a different hospital to me, as soon as she has any experiences of the symptoms she is sent straight away to A&E where she is taken seriously, given a emergency lumbar puncture and kept in over night to make sure she is OK and prescribed medication. She only has to take the medication for a month to make sure the swelling goes down and is OK to carry on until the next flare up. In the differences of a matter of a couple of miles we are in two different positions.

I implore you all that if you experience regular headaches and eye problems go to your doctor or your local A&E. If your a caffeine lover this is a serious and rare disease and I might lose my eye sight and one of the main causes of IIH is caffeine and stress! Beware of your health as you never know when YOU might be affected.

33 comments:

  1. No problem! Thanks for reading xxx

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    1. I was dx with IIH 4/30/12 and have lost 93 lbs to no avail. I continue to eat healthily in hopes that by losing 25-35 more I will go into remission. I suffer headaches, whoosing, bilateral optic nerve swelling, loss of perifpheral in both eyes/worse in Left.. sleep elevated, have LP every 5-6months with drain and opten leak with follow up blood patch... the list is endless.. but what i stuggle wit the most is not the pain.. it is the blood pressure 80's/40's and FATIGUE... oh I have all I can do to care about getting up...i just sleep sleep sleep... its a problem for my jobs and my house cleaning.. no energy... has anyone gotten beyond this? adaptations? something?

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  2. I have IIH, I was recently diagnosed. I went to my GP who performed a blood pressure check on me which turned out to be 178/130 then I was taken to the admissions ward by ambulance. This was 4 weeks ago, I was given a Lumber Puncture after a day or so which took them an hour to do, after a total of 12 attempts due to the curvature of my spine. I was told to lose weight and go back to the hospital in a months time to check my vision. It's all really scaring me, I believe that I have sleep apnea which apparently can be a cause of it. The sleep apnea is made worse by me being overweight also.

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    1. I also have IIH and according to my optho-neurologist at Duke, the absolute worst thing for this disease, even more so than being overweight, is being anemic. One of the things that can cause anemia is sleep apnea. About a year after being diagnosed with IIH, I was diagnosed with sleep apnea, as well, and started using a CPAP machine. About 3 months later the IIH went into remission. I cannot swear that the use of the CPAP is the reason why, but that was the only change in my lifestyle that I made during that time.

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    2. HI Tracey, Do you go to Duke in NC? as my daughter has this, and all of the sudden flared up, and we have no idea why

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  3. Some neurologist believe its down to weight but there is no conclusive evidence that it is caused by being over weight. It can be very scary when you are first diagnosed and don't know much about it. Check out http://www.ihrfoundation.org/ and I'm here to talk when ever you want to and you can follow me on Twitter sinister416

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    1. my daughter is 13, they diagnosed her at age 8, she has never been overweight, she is the unknown cause up at duke, it just flared up on her the past two weeks for no reason, so something is causing it, since after her optic sheath surgery at age 9, she has been dormant with it

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    2. The overwhelming majority of sufferers at first diagnosis are overweight young women. Reasoning hasn't been fully determined yet. That said, I'm male with high CSF pressure.

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  4. Hi, I also have this condition I was diagnosed in May 2010 and only had it for 6 months with the help of medication. I am a healthy weight so there is no explanation for it. Unfortunately it has just returned in the last week and it was diagnosed straight away. I am back on the medication for a few weeks I hope. I just forgot how back the headaches were wouldn't wish it on anyone

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  5. I'm sorry to hear you have been diagnosed with these condition and that it has flared back up for you. I hope the medication settles everything back down for you check out www.IHaveIIH.com for support xxx

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  6. I was diagnosed yesterday. I'm getting ready to start the same medication and it scares me. Have you had any improvements? Also, what was your intracranial pressure? They measured me at 38cm or 380mm...anything above 25cm/250mm is considered IIH. However, after draining over 6 cc's of spinal fluid I still had a pressure of 27cm/270mm. Now I've got a horrible headache...it is funny because I never experienced headaches before...just blurry vision and swooshing...the post spinal tap headache is horrible (although not as horrible as the actual procedure, which was so bad I nearly vomited on the table). I'm overwhelmed and my universe has turned upside down.

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    1. Hi I was diagnosed as a side effect of doxycycline (antibiotic, if you have iih don't ever take it especially!). My optic nerve was swollen & I have a slightly increased blind spot. I used to feel really out of it by the evenings, and lying down was uncomfortable. I had a lumbar puncture just after xmas, it was horrific, and my opening pressure was 33cm, they brought it down to 16.5cm. I had a HORRENDOUS low pressure headache afterwards AND I KNOW IT - it is possible that you are suffering from one as a result of the LP. Is it worse when you're standing or sitting up? I chose not to start the medication just yet, I have other health problems and I want to ensure that it is absolutely necessary before I do so. Keep your chin up, it is scary, but you can get through it xx

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    2. I have been through it now and am still suffering, had a lumbar puncture, which gave an incorrect reading, the hole didn't close over and I had no pressure going to my brain at all (from too much to none in just a short time doesn't feel good)
      I couldn't stand up with out falling down after throwing up and I couldn't do anything. After a trip to the emergency department, I had to get a blood patch to cover the hole and was released late the next day. Worst experience of my life. But it is still an ongoing process of tests and just trying the meds at different dosages to see if they work.

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    3. Sorry if that frightens you! I also meant to add that it is a condition which you can live with, there are ways to get around things, and depending how bad your case is, there is always help.

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  7. Hi I got diagnosed in december with this
    ... The meds made me feel sick so i stopped taking them... I'm scared to admit to my doctors i can't handle taking the pills as i'm really not good with any kind of pills as it is... I'm scared. I don't want to go blind or get worse and hate the idea of another lumbar puncture. Would i have to be on those stupid meds for the rest of my life? I know someone who has the same and she still is on her pills after 5 years. I've only just turned 20. I'm starting to get little headaches again and i hear the whoosing in my ears...

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    1. Hi Kate,
      Are you doing better? I had the same problem and when I doubled my water intake (120oz at minimum), the pills no longer made me sick. I hope you're doing ok.

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  8. Hi,

    I just came across this blog and wanted to share my story. I have been diagnosed with iih; it took them couple of years to figure this out as I had atypical symptoms. For several years now I have been suffering from severe headaches, very sporadic, sometimes caused by being in the sun. My eyes are very sensitive to light that I can't step out without my sunglasses even to get the mail. Back in late 2008 I started having clear liquid drip from my nose every time I bend down or tilt my head. I went to my GP and ENT specialists who said it was probably sinus allergy and diagnosed my headaches as migraines. This continued on for more than nearly 10 months. Towards July 2009 my headaches got worse and so did the leaking from my nose; I started having these "attacks" where I couldnt lift my head from the floor. Had to make several visits to ER but they turned me away giving me pain killers for my headaches. MRIs and CT scans performed dis not show anything conclusive. After a several days no sleep, nausea, vomitting and headache I went to ER and demanded that they do something. Finally an intern on call that night order a lumbar puncture and they found out I had meningitis. I was admitted in the hospital and was treated. After several days of hospitalization and MRIs they finally connected my headaches and the clear liquid leaking from my nose and confirmed that I had been leaking CSF for the last 10+ months but didn't have any of the severe symptoms associated with a CSF leak. They performed a surgery to fix the leak everything seemed to be fine but no explanation for why I had the leak. About a year after my surgery I started hearing whooshing noise in my right year and experienced dizziness every time I bend down. After repeated tests I was diagnosed with Superior canal dehiscence( with minor hearing loss in my ear) and a enlarged vein at the base of my skull. My recent LP dis suggest I have iih but My neurologists doesn't think the 2 issues diagnosed have anything to do with iih but my ENT did. So finally I was prescribed Acetazolamide by my ENT; I have been taking it for 3 weeks now. The symptoms have are too bad, just tingling in my feat and some nausea. My whooshing has not completely stopped but definite improvement, they are less intense now. I will be going back in June for my follow up and will know then if the medication is helping.

    Sorry for the long story, wanted to share my story to let folks know that symptoms could differ with each person ( I had no issues with my vision). Thanks.

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  9. hi i am so glad i have read this.

    i was diagnosed 3 weeks ago. it al started when i went to the opticians for an eye test because i was seeing snow flakes as i call them in my vision, flashes and haloes. he rang the hospital and got me admitted strait away. they performed a mri scan which was fine. the doctor attempted 3 lumberpunctures which i will not lie really was not nice. after fiddling they decided to take me down to theatre as they had a scan there to direct them to my spinal column. they got it eventually, my pressure was 48 they borth it down to 20. i did have a mega headache for a few days which reduced to aa managable headache. i now wear prism glasses due to perminent damage to my eyes, i see double vision.

    but what i want to know is. i am really frightened at the moment. i am on the diamox 500 mg in morning and night. i get the pins and needles and horrid tast in my mouth but hey thats fine. for the last 4 days i have had a really bad headache and pain at the base of my scull, my vision has worsened, the flashing is frightening me to death as i wake up and forget about it then flash . i really feel lethargic. WHAT SHOULD I DO

    please help

    jackie

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  10. Hello. I was diagnosed in January. The Diamox was horrific for me as well. My GP told me that this was due to severe dehydration. She told me to start drinking 4 liters of water a day (I know that is a LOT, about 120 oz of water), but within 48 hours, my side effects were down to slight tingling every now and then. Since January, I've lost 25lbs and brought my optic nerve swelling from high-end moderate to mild and low risk. I also have cut my dosage from 1,000mg to 500. I had an opening LP pressure of 37 too, so it was high.
    Slowly, it seems to be getting better. I check back with the ophthalmologist every 8 weeks, re-dilate and re-check...

    PLEASE, try to drink 4 liters of water a day, it really makes a difference.I thought my doctor was crazy, but I can feel the differences on days when I can't get my water in...and I'm lethargic, and my body hurts, and I'm cold and feel like I'm getting the flu... When I do get my water in, it gets better.

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  11. Its so great to know im not alone out there! I was diagnosed about 5 years ago While i was in a really crappy stressful relationship. I was put on diamox and it worked a treat except for the unbearable tingles oin my fingers and toes! I eventually came good so was slowly weened off them. Up until a few months ago i had been really good with wonderful children and a beautiful loving husband, when my crappy ex decided to take me to court for custody of my daughter. Since the court proceedings started i Have had severe headaches blurred vision nausea and so on. i eventually went to my optomotrist who sent me straight back to a&e who then admitted me to hospital and did yet another lumbar puncture and much to my disgust put me back on diamox. I had always wondered if stress could be a major contributing factor, and no doctor had ever mentioned this either, but now after reading your story, i really do believe that if it wasnt for stress i would still be feeling "normal". At the moment i feel really lost and disoriented like i dont really know where i am i forget EVERYTHING and struggle with words alot, which is frustrating for not only me but everybody around me. I hate having to stop and think really hard before i say what i want to say. grrr. Anyway thanks for posting this blog

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  12. I am happy to know I am not alone, but scared to death of my 1st Lumbar Puncture which is scheduled for the end of the month :-( I don't know what to expect, I am a Mom of 2 very athletic kids and worry that I will be laid in bed for far more days than I'd like. I also do know how to start the process of trying to reverse this thing? I was told to lose 40 lbs, which I would have long ago had I known how?? I am very frustrated and have had an EXTREMELY stressful 2012 so far - which I wonder if this assisted in bringing on these problems, that I was unaware of up until now? Any helpful info/experiences re: LP is appreciated. Praying for a cure!!

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  13. Hi,I've gone through the same thing in september...last three months were awful...to begin with it was just a normal headche ...i started with augumentin (5 day course )as i had tonsil problem also but later on it turned in to severe headche,vomiting & diaarhoea & this was around 6 sep,2012.Then i went to family doctor ...all MRI & CT scan were normal but on 11th sept at around 11 pm..i had a seizure as a result i was hospitalized immediately..my pulse rate went low (28)...admitted in ICU...then very next day LP was done...diagnosed with meningitis at that time...but all medicines were on.. be it viral,bacteria,TB & Seizure...then i was discharged on 22nd sept...but again on 23rd sept..drug reaction & high fever happened...as a result was hospitalized again...now this time diagnosed with IIH...earlier they said my brain [ressure was more than 300 mm...this time also LP was done but thereauptic & not diagnostic...30 cc CSF removed...was given a treatment of acetazolamide till 16/11 (250 mg) plus medrol (from 80 mg )...now its on tapering side...right now it's 16mg...With acetazolamide one definitely needs to take potassium,calcium.symptoms of acetazolamide - burning of feet ,shivering of hands & urination..though no loss of apetite was observed in my case...because of steriods i'm suffering from acne problem & moon like face ( heavy chiks)...during steriod ...bones become weak so vitamin E is ncessary...but yes i'm totally agree with wife & mother post (thank you for sharing)..diagnosis & medicine at right time is very necessary....regular eye check up is must..As a result,after almost 2.5 months i'm back to my normal routine....nd feeling good...so please don't delay if you have severe headche & vision problem.
    P.S- Had 3 Lumbure punchure.. but seriously it also depends on your doctor..LP was not as painful as i heard...sorry for sharing it all..want to aware my folks.

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  14. Thanks for this great information. My brother suffers from intracranial pressure also and it's a pretty hard thing for him.

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  15. I was diagnosed last yr with IIH I was 19at the time and was kept in hospital for 3 days and had MRI's, CT's and a LP and was on Diamox for 6months. Yesterday I went to an optometrist who told me I have swelling of my optic nerves again (I went with complaints if seeing haloes) so my next step is to see my GP I just hope there are no more LP's I had an awful experience. Has anyone else suffered more than once? Had anyone had surgery?

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  16. I have always liked knowing that the intracranial pressure can be relieved in very easy ways. Thank you for sharing this!

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  17. My now husband is completely blind (optic nerve atrophy) because of iih. In September of 2001, when he was 23, he started having the horrible headaches, blurred vision, and hearing whooshing. His doctors had no idea what was wrong with him and gave him steroids hoping to help....now we know that was a big mistake.his vision got so bad in one eye that he had to wear an eye patch. He went to a neurologist, had an MRI, and was told he had a severe sinus infection.they told him that if his vision didn't get better in a month to go to an eye doctor. He went to an eye doctor a week later. There, they shined a pin light in his eye and told him to immediately to the ER. The hospital had to do 6 lumbar punctures to releive the pressure from his brain. If he had waited much longer, he could have died from possible brain hemorage. Then they put in the shunt to help the relief of pressure in the future. The swelling the pressure caused on his optic nerves was so bad that it caused the nerves to die, leaving him blind. While he lives everyday with the results of IIH being mistreated and diagnosed in an untly manner, he dousnt suffer so much with the symptoms. He is glad he got the shunt and feels that the experience he had getting the surgery was nothing compared to the experience he dealt with IIH before he got the shunt.

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  18. I was diagnosed with IIH in early November 2008. About a week before, I had some pretty bad headaches, and then a couple of days after those started, I got spontaneous double vision. It was pretty scary. I was also extra sensitive to light. I had some stiffness in my shoulder and neck too.

    They did an MRI to check, found the papillodema in my eyes, and then finally came up with a suspected diagnosis of IIH. They said I would have to do a lumbar puncture to confirm the diagnosis. I begged then to let me try the Diamox first and see if it worked, because I had so many other symptoms.

    They did, and it worked. I had the tingling in my feet and fingers for a few days, nothing too bad. Made sure to stay hydrated. The most annoying thing was the frequent urination, but I could live with that. I lost a lot of weight, which I think helped. For me, the medication was awesome.

    I weaned off it a while ago. Now I'm pregnant, and the symptoms are back, which can happen. Diamox isn't safe during pregnancy, so now I'm at a loss for what to do.

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  19. I just wanted to share my story on here for anyone going through this. I started having terrible pressure and whooshing in my ears October of 2010. I was told 3 times by my doctor that it was only tension headaches and I was told to take Tylenol with a Coke.

    After several weeks of pressure and eventually blind spots in my eyes I wasn't convinced what I was experiencing was "tension headaches". I was persistent and so she sent me to an optometrist and after checking my eyes told me my optic nerves were swollen and that I probably had IIH.

    I was then sent to a neurologist which was being VERY thorough and that I am VERY thankful for or else I would have continued to live with the diagnosis of IIH. He ordered an MRV (Magnetic Resonance Venography) and discovered I had a whole line of blood clots throughout my brain.

    I was immediately prescribed Warfarin (blood thinner) along with Diamox. I was on those medications for a year. (NOT a fun year, may I add! I never want to experience this again!) I feel for all of you experiencing the effects of IIH. I know it is horrible.

    I just wanted everyone to consider asking their doctor for an MRV to rule out blood clots! I don't even want to know what could've happened had I not had a very good neurologist!

    I still have slight symptoms that I never experienced in the past but for the most part it isn't too bad. I truly wish anyone experiencing this finds the cause or has some type of resolution. Good luck to all of you, keep your head up!

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  20. I also want to share my story.. I know there are people out there looking for information like I am now, like I should have been back then.............. in 2006 I went to the eye doctor to get glasses... he has a horrid look in his face and said I needed to go and see his colleague, the opthoneurologist ... so I went, I had headaches, but I have had headaches all of my life, I was used to that, and I have always been sensitive to the sunlight.. I was ALWAYS told it was because my eyes are light... anyway... they said I needed an immediate LP and my pressure was 36... I was prescribed Diamox and naproxen and sent home... after about 6 months, I stopped taking the medicine and moved on with my life, there was no generic brand for the medication at the time and I could not afford to pay for it, so I stopped and just moved on, after all, I didn't even know I had this stupid thing to begin with.......... then a month ago I went to the GYN and was told I needed to have a hysterectomy or take birth control pills for a while to try an avoid surgery... I chose the pills because who wants to have surgery?? and guess what.... 3 weeks later I was in the ER ... feeling like my head was about to blow off, I couldn't raise my head or move my eyes to the side.. and it never even crossed my mind that this could be the problem... I told the ER doctors that I had this, just because they always want your medical history, they took a CT scan and blood test and almost let me go home (telling me the whole time nothing was wrong with me) when I asked the doctor.. How can I be in this much pain and nothing be wrong with me? ... HE left and came back and said since I had this thing in the past they were going to do a lumbar puncture just to be on the safe side... my opening presser this time <55!!! so they trained 4 viles of CF from my back and for 2 days I felt fantastic.. I got back on the diamox thinking it would be ok, I would take it and I would be cured again and life would go on... It has been a week now and my headaches are getting worse, I can feel my pressure getting higher ... these are the worse "migraines" in exsistance .. I either sit on my bed and cry or take the pain pills the doctor told me not to take because they are addicting.. (they gave them to me in the ER) I try not to take them but there are days I cannot sleep unless I take them... So, here we go again, only worse this time and it could ruin the best job I have ever had.... and I am the only income provider in this family.. and there is nothing that can be done....

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  21. My friend has been almost killed by the hospital,she went into hospital with what they called a cluster headache,they were suppose to put 5 mg of steroids into her once a day,instead they put 50mg into her through a drip constantly,she has now got intercaranial hypertension and a blood clot in the brain,we have letters from the hospital admitting their mistake,should we take them to court?

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  22. I had a LP 18 months ago with pressure >40 my GP referred me to a neurologist who dismissed me without examination and told me my symptoms were all in my head.
    Now am being 're-referred to a different neurology team as the Rheumatologist I saw last week flipped his lid at the result and lack of care.
    I've lost some Vision and my symptoms are twice as bad now. Going to sue the behind off my first neurologist Damn idiot man.

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