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Idiopathic Intracranial Hypertension

Also known as Benign Intracranial Hypertension

All discussions in this group

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  • Think i might have iih but neuro isnt helping.

    Hi about 3 months ago i started getting headaches out if nowhere that kept getting worse fast forward to the past month and a half they have been non stop everyday 24/7 migraines sometimes stabbing pains. I get ringing in my ears and dizzy spells along with farigue.i had an episode of what felt like...

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  • How long does it take to be cured?

    I've have the surgeries one where they place a deep shunt in the brain and the second one in the eye where they cut or make a slight cut on the optic nerve to release pressure. Plus I've lost 50 lbs

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  • Papilledema but spinal pressure was 9?

    Hello. I have been on a roller coaster health care journey for the last 7 months. My symptoms are: pain in the back of my head, pressure all over, pain in eyes, sensitive to light and sound, even someone's voice makes me cringe at times,vertigo, off balance, stiff neck that clicks, visual blurring,...

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  • Anyone have a shunt?

    Hi everyone! I am so glad to see I'm not alone whebit comes to this horrible disease. I have been struggling with this since February and have been on Topamax as Diamox made me too sick. I recently got married and my husband and I are looking to start a family. After talking with the doctors they...

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  • New to this - post lumbar killer headache and diamox

    Hi guys, As the title says I am new to this. Was diagnosed last week after having all the usual tests. My lumbar puncture was exactly a week ago with a reading of 27. I was told this was high but not as drastic as some people with this condition. Before diagnosis I suffered extreme headaches and sight...

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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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  • 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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  • Recent diagnosis :(

    Hi, I'm 18 years old and was told by my eye specialist last week that I have BIH or IIH and I have to go for an MRI in the next 4-6 weeks and be referred to a Neurologist.  I'm unsure what I should expect from the MRI and seeeing the Neurologist should I prepare myself for bad news? Should...

    Posted
  • Hi need some advise please

    Hello I was diagnosed with benign intracranial hypertension 3 weeks ago all my blood results came back fine I had a lumbar puncture done started to feel loads better afterwards but started feeling poorly again so when to get opticians and they said that I've got a lot of pressure behind my right...

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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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  • IIH Suspicion

    Hello, this is my first post here and I hope that it is ok that I post my questions even though I am not diagnosed. My opthalmologist found a papilledema in my right eye after I'd been complaining about visual disturbances, dizziness, total exhaustion, and tingling/pain in my extremities. I have...

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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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  • 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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  • iih

    Hi everyone. I was diagnosed with iih 3years 4 months ago. It was in my 5th month of pregnancy. Had 4 lumber punctures during pregnancy. And 6 after that. I am on diuretics since the babies birth which is 3 years now. Had my 10th mp on friday. Weighloss and diuretics have nit helped. Fluid still building...

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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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  • 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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  • Very anxious!!!

    Hi, I've been diagnosed with IIH and a possible blood clot in the venous side of my brain (thrown in for good measure 😒. This diagnosis was made 2 weeks ago, my optic nerves are serverly swollen and I have a large blind spot in my left eye. I had a lumbar puncture done 10 days ago but they...

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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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  • 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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  • 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...

    Posted
  • 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...

    Posted
  • 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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