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Idiopathic Intracranial Hypertension

Also known as Benign Intracranial Hypertension

All discussions in this group

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  • IIH / weird "spaced out" fatigue/ Fed up

    I have IIH for about 3 years now. For the past 3-4 months I have been sleeping very heavily, and am unable to get up in the mornings, and keep falling back into a very deep sleep. I feel like I'm very spaced out all the time and it concerns me especially when I'm driving. I've never had a...

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  • IIH in Child advise

    Hi Everyone, I am new to all of this, I was hoping for some advise. My 9 year old has been diagnosed with IIH. The diagnoses was confirmed by a MRI recently.  The headaches just come and go. Sometimes she is having headaches everyday. We dont seem to be able to find a trigger. So far we have seen...

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  • Recent diagnosed with IIH/BIH

    Hi all. I'm 37 recently diagnosed. Had bad headaches for years I just thought it was just a migraine but now they obviously weren't. Optic nerve is swollen, has the pulsatile ringing in my head, I can even hear the fluid - yes I know that sounds bizarre and the drs who I tell that to look pretty...

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  • Newly diagnosed

    Hi, I am a 28 year old Female recently diagnosed with IIH and I feel lost! I am taking acetazolamide 250mg daily and the side effects are brutal to say the least, dizziness/confusion/nausea and pure exhaustion, plus terrible cramping and tingling in my hands and feet! I have been taking it for a couple...

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  • IIH

    For a little over two years now I have been waking up and dealing with the same migraine throughout the day all day . I have had 3 LP ! My pressure for my first one was a little over 16 and my second and third one was not high at all . I'm extremely in pain everyday and it's hard for me to function...

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  • New diagnoses

    Hello I was Diagnosed on Tuesday by my nerougologist that I have IIH he ordered a spanal tap and gastric bypass surgery. He showed me in the MRI and CT where there is suppose to be two main artarys on your brain they only showed one due to fluid. He said I know you have this the question is how progresses...

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  • intracranial pressure, double vision

    Hi guys. I was diagnosed Intracranial pressure 1 week earlier. I dont have any headaches, but my vision got bad. I see everything 2 (double vision). My doctor perscribed me spironolactone tablets, and aktovegin injection. Im very scared. Can I get blind? I also see a bit blurry. But sometimes for 3-4...

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  • IIH lost focus, memory and concentration

    Hi, I am experiencing some difficulties between my pain, declining memory, and work/stress. I'm going to share what I feel is happening, and I hope some of you have some wise words of previous experience to pass along. I was diagnosed with migraines in 2009 and in 2014 my ophthalmologist noticed...

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  • New to this

    anyone have issues when they bend over or move neck/head certain angle with sudden increased pressures behind eyes and nose?

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  • Newly Diagnosed and strange reaction to spinal tap

    Hello everyone! I am so happy that I found this community! I was just diagnosed with IIH last Thursday (the day after my birthday, so that was a fun bday present!!) but I think I've had this for around seven years. (Since I was around 12) Has anyone had a really bad reaction to their lumbar...

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  • Painless head throbbing when lying down

    I'm 68 and have had painless head throbbing in the top, back and sides of my head which either wakes me up at night or in the morning. This has been going on for the past 7 months and no doctor seems to know what it is.  I am afraid they think I am crazy, but what I feel is real, and I simply...

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  • New diagnoses,

    Hi all, I'm 25 year old female from the UK who last week was told I have Idiopathic Intracranial Hypertension. I'd been suffering headaches for over a year assuming they were sinus related or due to tiredness. However 3 months ago I started to lose vision in my left eye for 3-10 seconds at a...

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  • Am I right to push the doctors for a Lumbar Puncture?

    Just had my outpatient neurology appointment today and I'm a little confused by it all. A month ago had an emergency appointment with an ophthalmologist as I had severe headaches everyday for a week and my optician had referred me. He ran tests and took pictures and showed me I had papilledema then...

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  • Pain in leg with LP shunt

    Hi I been getting extreme pain in my right leg it hurts so much to walk I had got 10 regular lps and I have an lp shunt and the amount my back pain I'm in my leg pain is double that i get tired really fast and If I push my self then when I eventually rest the pain is so severe but I don't want...

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  • High spinal pressure

    Hi my daughter has had constant head pain for over a month now. MRI scan is clear. Did a lumber puncture and pressure was 36 normal range should be 10 -20.doctors don't know what it is she doesn't have the classic symptoms no blurred vision dizziness or feeling sick. She says the pain is a 6...

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  • Lumbar Puncture tomorrow.. what's it like?

    Hi everyone, I'm new here. I have a suspected diagnosed of IIH and I'm having a lumbar puncture tomorrow so they can measure the pressure and confirm the diagnosis. Has anyone on here had a LP before? What can I expect? I'm pretty nervous Also, does it help with the headaches and eye...

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  • My story/words of encouragement (BIH/IIH)

    Hi everyone, My name is Becky, im 21, and i was diagnosed with Idiopathic Intracranial Hypertension nearly 2 years ago. This is my story and words of encouragement for everyone. I started to get severe headaches in the mornings and when i bent over, also when i bent over then stood up i would go blind...

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  • Help!

    My name is Daisy banwell. I am 25 years old, for the last 7 years I have suffered with severe headaches, and collapsing episodes. I have had 32 Neuro surgeries, having shunts put in and taken out. I have IIH, and they say Unknown pressure in my head. I had a chiari malformation decompressed. My blood...

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  • ICP?

    DailyStrength TheDude2741's Profile Friends Support Groups Journals Pseudotumor Cerebri Support Group Joined + Invite Friends+ Invite Friends1 Online 7,872 Posts 335 Members < Back to All Posts ICP Posted by: TheDude2741 04/17/2017 Mood: Good About 4 weeks ago I was doing push-ups and sit-ups....

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  • Intracranial hypotension

    Hi my son has a hypotension headache for weeks now following a lumbar puncture for raised intracranial hypertension. Has any one experienced this ?? My son is 17 and in bed due to not being able to walk around , feeling dizzy and headache worse when up !! Any one any ideas on how long this can last ???

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  • Pressure and headaches

    I suffer with really bad miagrains and pressure pains in my head I've had a ear piercing done (dath) which has made my miagrains go completely (anyone with miagrains I would recommend the piercing it's brilliant I've been headache free for 5 months now ) However I've been to doctors and...

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  • Feeling off

    I've had almost nonstop headaches for 2 years now. It's almost constant but it varies in severity. I sometimes have pins and needles in face and head. I'm dizzy sometimes. When this started it was just an aching pain behind my eyes. My ears ring and ache at least 5 times a week. I've...

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  • IIH

    I was dignasoed with IIH almost a yr ago now and I haven't had a relief from migraines daily & lasting all day as of today ! I have had two lB the first one was successful the second one wasn't & I have had 5 MRI because my symptoms change quickly all my tests came back normal besides...

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  • I have IIH, no doctor understands the pain I am in.

    I was diagnossed with IIH in November of 2014. I was having the worst head pain for about 2 months that would make me scream, cry and my vision would go in and out all day long until I would finally pass out. My husband didn't know what to do, my 2 boys were scared that they would loose me, and I...

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  • Idiopathic intracranial hypertension

    My son had idiopathic intracranial hypertension, he had a lumbar puncture about 4 weeks ago which led to low pressure headache as the doctor felt he had too much CSF fluid drained then a week later he had a blood patch which didn't work !! He is at home now but still has a continual headache worse...

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  • Empty sella

    Hello new to this, my partner just over a year ago had a non epileptic seizure and banged her head, well long story short, can some one please tell me what empty sella is please

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  • idiopathic intracranial hypertension

    I had been having severe headaches for a few months, I went for an eye test thinking that i must need glasses, the optician sent me straight away to the hospital and I was diagnosed with IIH in July 2011 was kept in hospital overnight after having a Lumbar Puncture. This week I received my 4th Lumbar...

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  • I have Intracranial hypertension and had a lumbar puncture.

    I was wondering how long after my lumbar puncture should i start to feel a bit better i am on water tablets which are making my hands numb. but every thing i read isnt explaining why im getting confused between numbers and lettters. I just have so many questions about this that none of the doctors seem...

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  • Styptoms back after 7 years

    I was first diagnosed with BIH 7 years ago after awful headaches, pulsing in my ears, blurred vision and an absolutely awful problem laying down which would give me palpitations and a squeezing sensation in my head. I started on 1000 of Acetazolomide and over the years all symptoms...

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