Idiopathic Intracranial Hypertension :: My Daughter Has BIH
Jun 29, 2010
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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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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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 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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My only sister has just being diagnosed with BIH which tells me surely its genetic.
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My daughter was born with a squint, the eye's surgeon operated on her 5 days ago but since then she suffers from double vision, she is 9 years and six months old, can anyone advice me whether the double vision is common after such surgeries or that means she might need further treatment.
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my daughter took too many and sadly passed away 3 hours later.
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I am not very sure of this but i felt from past 3 months i have been urinating frequently at night and i am also feeling thirsty throughout the day. My mother was a diabetic patient so i am really scared if i have inherited this disease from her?
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My daughter is a week old today and I've lost 22 pounds. Is this normal ? I'm not even dieting. I gained a total of 32 pounds while pregnant and I'm not over weight
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So to make this as short as possible. About two and a half years ago I had a really bad low blood sugar episode. I'm not a diabetic, I wouldn't say diabetes runs in my family considering only a few have it. I had a really bad diet years ago, few energy drinks a day, cigarettes, and junk food out the ying yang. Now the day it started I hadn't eaten much so it could of happened to anyone. Felt all the symptoms, and thankfully I work at a hospital so when they checked them it was a 47. Ate some food and felt better. That day after all those years of bad food I cold turkey quit all the bad foods and energy drinks. Didn't stop smoking though. I was very active, I mean skateboarding for about 10-12 hours a day. Very thin, about 125 pounds from the age of 15-21. Well since that night it happened I became a very panicked person. I started binge eating because I always felt the symptoms of it, although sometimes I couldn't tell the difference between anxiety and low blood sugar. So I would check my sugars, sometimes they would be fine, other times they would be below 70. When I panic they get worse. Well now I eat the same thing everyday, eggs, spinach, tomatoes, cheese, chicken, protein packs, low calorie gatorades. No sweets what so ever, and I've basically become agoraphobic because of my sugars all the time. I always feel dizzy, weak, shaky, faint. But like I said sometimes I can't tell the difference. These winter months seem to get worse, now lately I can't even tell when they're getting low. Earlier today they were 67 and I couldn't even feel it. I used to though. My anxiety has gotten a lot better but not fixed. I'm afraid it'll drop in my sleep and I won't wake up it's horrifying. No meds ever, no surgeries, nothing prior to this. Always healthy as could be.
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It's been awhile since I've posted. My daughter had flat-foot surgery on her left foot on Dec 17, 2014 (subtalar arthroereisis and gastroc recession). Had this same surgery on the right foot and calf a year to the day in 2013 as well, with excellent results. As an aside, prior to surgery in 2013, her right foot was more troublesome than the left, but the left was an issue as well. Last time, she was at about 80% healed by April. We were very happy about that.
On the one hand, she's coming along nicely with this recent surgery. She goes to PT twice a week, doesn't mention any pain during the day in the walking boot, is in good spirits, and takes the boot off at home and meanders around without it, barefoot. I would think that this would hurt (I kinda cringe when I see her doing it) but she insists she's okay. She has a slight limp, but I figure technically, it's still kind of early yet.
What has me a little concerned is that she isn't tolerating a shoe. When we last saw the surgeon about three weeks ago, he said it was fine for her to start transitioning to a shoe. Yet here we are three weeks later, and she still prefers to wear the walking boot. Says that her heel hurts when it's in a shoe (how it doesn't hurt when she walks barefoot at home: I have no idea.
She is required to wear tennis shoes at school, and she's been wearing New Balance for years now. When I look at last year's calendar and reflect on the surgery for her other foot, I recall that she was further along in the process. She was already wearing shoes at this point. Walking slowly yes, but was wearing shoes.
I wondered...should I maybe go up 1/2 a size? Maybe her old shoe is too snug in the heel now, or there may still be some swelling? Should I got up 1/2 size AND go wider?
She's having an orthotic made for the left foot, and maybe that will help. She has some school events (field trips) coming up at the end of April and also in May and I was hoping she'd be easily walking on her own before then, and able to participate.
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I've got idiopathic dilated cardiomyopathy. I have Afib with this and keep getting extreme tachycardia which means I have to go to hospital to get it controlled. I have asthma too. I'm in Europe and have good doctors - I was in hospital Saturday night into Sunday - I called my doctor as my heart was beating so fast and irregularly, and it was having long intervals of no beats - I have a stethoscope and could hear nothing at the apex and I've been taught how to auscultate, and I was very very breathless. She was very worried and sent me to hospital. After being stabilised, I saw a a cardiologist who did loads of tests and said my heart was very much more dilated than before. On discharge I've been given 02 to breathe if I feel breathless.
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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 been on hypothyroid for long after I had total thyroidectomy in 2008. Recent test indicate that my hypothyroid is now euthyroid and normal. Yet my blood pressure remain very high. 180/100. What medication do you recommend. I am presently on 50mg levothyroxine. I am restless all day.
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have been on Indapamide a few months and so far so good, feel so much better since coming off ramipril! I am also warm all the time which is such a change, I Was always cold when my bp was so high! I just wanted to say something positive about a drug as I find it very good with little side effects apart from tinnitus but that's nothing compared to previous side effects. I spoke to a nurse who uses this drug and she says it's fairly new and quite expensive so not used a lot but anyone struggling for a good drug, I think it's okay, don't know if it reduces bp as still have phobia but feel great!
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Does anyone have pots with high bp when standing or activity?
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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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