Very High Idiopathic Intracranial Hypertension - 16 Lumbar Puncture In 2 Years
Nov 12, 2008
I was diagnosed in October 2006, after been admitted to Hospital with suspected Meningitis. They did a Lumbar Puncture, and the CSF pressure was very high, I was shipped out to a Hospital in Sheffield - Away from Uni, and even further away from family.
It was confirmed I had BIH.
Ever since, I've had to have Lumbar Punctures every 6-8 weeks, with the CSF always way too high. I was put on Diamox too, which didn't do anything at all. I'm now on Topiramate (Topamax), which also doesn't work for me.
I thought it was just people around me deliberately not understanding how painful and disabling it is, but after reading your experiences, it seems not many people understand.
Woke up this morning in pain (like most days), with dodgy vision and loss of coordination, so time for another LP!
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I am a fit, healthy 28 year old guy who has spontaneously developed severe high blood pressure, temporal pressure headaches, dizzy spells and blocked ears. The symptoms vary, with acute periods lasting a couple hours and occurring on a weekly basis. Generally an acute period is characterized by severe headaches, needing to lie down, blocked ears and extreme lethargy.
I have had CT’s and MRI’s of the brain and cervical spine, PET scans, ECHO’s, a multitude of blood tests and various other tests with no abnormalities.
I gym 4 times a week, eat healthy and work as a hairdresser, so my lifestyle is pretty healthy overall.
This condition is starting to limit my lifestyle and with two years of no answers I am putting it out there for someone to recognize or provide advice about what could potentially be going on!
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have had intracranial hypertension for 7 years i am coping well at the moment with the diamox tablets 25omg 3 times a day and i go into hospital every 6 months for lumbar punctures.i did go away 3 years ago but returned a year later worse but controllable.there is light at the end of the tunnel and i do get a lot of other symtoms but i just try and deal with it even though sometimes its hard i am 43 now.
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My 12 year old daughter had had headaches for some time and her endocrinologist advised her to have an eye test. I say 'endocrinologist' as she was born without a thyroid gland (extremely rare) and she's been taking thyroxine since she was 10 days old. She's also monitored for her hypothyroidism. Anyway, between her doctor's appt and her eye test, she got her first period. So we blamed her headaches on her development. The ophthalmologist said that my daughter needed to increase her lenses. So again, we put her headaches down to this. By time, her headaches moved down to her neck and 4 months later, at another routine eye test, I mentioned this and the ophthalmologist decided to look behind her eyes. He was horrified to see extreme swelling of both optic nerves and a swollen brain. She was admitted into hospital and had a CT Scan done. Luckily there were no tumours but a lumbar puncture showed that her CSF pressure was 50 (it should be 15-18). She was immediately started on diamox 250mg (acetazolamide). After a few days this dose doubled. Today she has just had her 6th lumbar puncture and as the pills don't seem to be working - her CSF pressure is on the rise again, her medication has been increased again. She's taking 2g per day (750mg-500mg-750mg) daily, which i think is too much for a child. On the 23rd July she's having her 7th lumbar puncture and also seeing a neurosurgeon, because inserting a shunt seems to be the only solution. Lets hope and pray all will be ok.
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About 3 months ago I had a sinus infection and never recovered after I had terrible like pressure building up in the left side of my head which would happen more at night or basically when I would lie down i also when my ears touch the pillow I hear my pulse and on the right ear only when I press against the pillow a clicking noise I would later develop sensitivity to bright lights sounds and smells.
I made 3 trips to a and e with the pressure building in my head on the last occasion it affected the left side of my body they just sent me away
I payed private for a neurologist did MRI on brain came back fine he diagnosed me with severe migraines and put me on propanol these have calmed the symptoms but I am worried as I am still left with a dull pulsating on the left side and have a bit of blurred vision suffer a lot with fatigue and when I try to exercise it kind makes my head
worse and I have noticed pain in my neck and shoulder on the left side had my eyes tested but said they were fine .
The thing is I am left with is like a dull pulsating on the left side with still sensitivity to light no energy I am not sure if this is chronic migraines just wondered of anyone had any ideas to what it could be I have been better since taking the medication but it worrying that it's kind of still there I also have irritable bladder and ibs and have been referred to a chronic fatigue clinic but I don't think that is the cause of my fatigue
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For over a year I have been suffering with idiopathic intracranial hypertension which ended up with me needing a stent inserted earlier this year. I have been left with horrendous headaches which has now been diagnosed as chronic daily migraines. My consultant has now suggested the following plan; reduce caffeine to zero (only drink 3 cups of tea a day anyway), no cheese chocolate or red wine (don't eat or drink these anyway). Propranolol beta blocker as preventative. Sumatriptan, Aspirin and Domperidone as acute attacks rescue plan. He also put me on waiting list for nerve block injections.
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I was diagnosed 3 years ago and recently spent a week in hospital due to a headache not moving my eyesight went with it this time for the first time ever and I was driving with my 7 year old in the car it really scared me yet I had a lumbar puncture pressure was only 24 but my speech has been effected my eyes keep blurring this headache has been here for 10 days now and still no budge when I was in hospital they said both my optic nerves were swollen and I seen my neurologist today and he says it's just a migraine. The first 4 attempts at lumbar puncture they did in the wrong place so was unsuccessful and have left me in agony can anyone suggest what I can do I am not overly obese but all's my specialist says is lose weight they will stop
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I had a LP done in march ever since i've had constant stabbing pain where i had it done pain in lower back(sciatica) in hip leg and foot. i cannot sleep walk far nor lift due to it it hurt to sit stand do anything basically i ve varis pain relief non of ir work its still there tried stretching little exercise just makes it worse then i can't walk.
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At the end of January I suffered a severe coital headache. For the two weeks after the coital headache I was experiencing a nasty numbing headache and eventually ended up in the hospital. I had a CT done which came back showing no bleed on the brain. I had 2 LP's as they screwed the first one up! I was also not told to lay flat for 24 hours or drink caffeine, terrible! The LP results were clear, a few days later I had a terrible post LP headache, it's now late march and I STILL have the headaches! At the end of February I saw a specialist who performed a CT angiogram to check again for an aneurysm, which was clear! I was told to wait for a couple of weeks to see if the headaches would clear up. Well, they haven't! Pain is worse after my head has been leaning forward and get back pain at the base of my spine! I get a saw achey pain behind my eyes as well occasionally.
Many thanks!
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My son had an LP done in Sept. He walked into the hospital fine and ever since then has been in extreme pain and has limited mobility. They can't find anything medically wrong with him.
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My only sister has just being diagnosed with BIH which tells me surely its genetic.
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i am not overweight. Drink a healthy smoothie and whole grain cereal almost every morning yet my BP is still high. (100/170). I was told it may be because of elevated insulin levels caused by the fruit drinks and whole grains (as well as the potato, rice, pasta and breads) that I eat. These are things that easily break down into sugars and cause the issue. (Basically a carb issue). Am I supposed to go on one of those caveman diets? Has anyone tried lowering their carb intake to lower their BP?
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Is 145/100 too high? And could be the reason for the headache as i am having a headache since two days; and my blood pressure is around 145/100 every time i monitor it.
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I have got BP problem at very young age 27 ,my bp is high always it some time 180/110,160/100 and sometime 143/77 , I have gone through blood test urine test all my test are normal,my bp was detected 2 years back when my weight was 110 kg but i decided to loose my weight instead of going for medication after 1 and the half year my weight is 92 but still my bp is high ,doc have told me to go for medication ,now I m starting with medication but I am feeling depressed how come my bp is detected at such young age need ur help guys ,is der no any other way den taking medicine .
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I have sporadic periods of hypertension where my bp will spike well over 160/110. They can last for days, or just an hour, but it is causing me a lot of problems because they can occur at anytime. When the bp spikes happen at night, I wake up shaking. I cannot take beta blockers because they make my bp go even higher. I am taking clonidine when I have these spikes. I am unable to take any other blood pressure medicine because at times my blood pressure is normal and bp meds will make it go too low. I have been tested for a pheochromocytoma, sometimes the tests are positive and sometimes they are negative. I also am hypokalemic and take quite a bit of potassium daily.
In addition I have extreme fatigue, shaking from time to time, muscle pain/weakness. I usually am hot when others in the same room are fine, and have episodes of sweating and facial flushing. I run a fever from time to time, have a rash from time to time and tinnitus. I also have sleep apnea and sleep with a CPAP every night.
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Recently i have been diagnosed with hypertension. My BP varies in range of 130-140 and 80-90. I am not on medicine yet to lower BP. Trying to control by physical activities and diet plan.
I have been on Zyrtec D (syrup) daily dosage of 2.5-5 ml for past 6 years.
Can prolonged use of this medicine cause hypertension?
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My partner just used a home blood pressure monitor and got a very high reading. Concerned, he is going to see a doctor this week. He's overweight and his weight has fluctuated for years, although he is losing weight now and seems to have a diet and exercise regime that are working.
The thing is I have no idea how long he has had high blood pressure. Is it likely it could have already caused damage that is irreversible? He's only 24, but he is going into a very stressful profession and I'm worried about his long term health.
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I am 32 years old and my BP 150/90 is it necessary to take medicine to control BP? plz suggest how could i control it without taking medicine.
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I was diagnosed with a heart murmur just under a year ago, could this be a cause of my BP being so high? I am active pretty much everyday doing at least 2-4 hours of exercise a day and eat a reasonable diet.
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I have diabetes for 10 years and recently got diagnosed with Hypertension. I am not overweight and i got these genetically.
Can you please suggest how to lead a healthy long life with these two deadly diseases.
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I have a little leg hair, stomach hair below bellybutton, armpit hair and penis hair, but my voice is not only high but ridiculously high. As I say I am 15 and starting college next year and without a doubt I will be with the 5% of other people like me, if even 5%. I am scared to talk to new people and over the phone because people think i'm gay or a girl.
It's seriously bothering me and getting in the way of my life.
When will my voice break, and also when is the latest it will break?
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