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Idiopathic Intracranial Hypertension

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  • Queenofinfirmum 1

    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 puncture?...

    3 replies 0 votes Last reply
  • Ginny Weasley 2

    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...

    0 replies 0 votes Posted
  • susan84872 2

    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 don't feel...

    11 replies 0 votes Last reply
  • lorraine83612 1
  • corbin28 2
  • gingerbex 1

    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 time randomly...

    8 replies 0 votes Last reply
  • annie3295 1

    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 sent...

    0 replies 0 votes Posted
  • jamie 63197 1

    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 to go...

    0 replies 0 votes Posted
  • craig85595 2

    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 out of 10...

    4 replies 0 votes Last reply
  • sarah53175 2
  • caitlinemma495 2

    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 pain? Thanks...

    7 replies 1 vote Last reply
  • becky21southampton 1

    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...

    5 replies 1 vote Last reply
  • ciara25432 1
  • Picsyfe 2
  • sparkleyeyes06 2

    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...

    1 reply 0 votes Last reply
  • daisy90437 2


    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...

    0 replies 0 votes Posted
  • TheDude2741 1


    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. At...

    0 replies 0 votes Posted
  • fiona26247 2

    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 ???

    1 reply 0 votes Last reply
  • steph64120 1

    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 they have referred...

    2 replies 0 votes Last reply
  • tenisha60238 1

    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 been to numerous...

    0 replies 0 votes Posted
  • Susie T 2

    IIH Ears constantly "ringing", spinning head and deteriorating vision

    Hi I was diagnosed with IIH a few years back now, and am currently taking propanalol 10mg twice, two times a day. I have a constant pitch in my ears (not so much a ringing, just a constant tone) and also get the pounding in my ears and head. Recently though at night when I turn over I have about a...

    1 reply 0 votes Last reply
  • Blessing410 1


    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 my pressure in...

    0 replies 0 votes Posted
  • amber21623 1

    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 couldn't...

    2 replies 0 votes Last reply
  • fiona26247 2

    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 when...

    0 replies 0 votes Posted
  • stephen89164 1

    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

    0 replies 0 votes Posted
  • carling 1

    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...

    30 replies 2 votes Last reply
  • allyson93458 1

    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...

    1 reply 0 votes Last reply
  • emma2047 2

    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 went mostly away and...

    0 replies 0 votes Posted
  • chantell28219 2

    Does this sound like IIH?,

    Hi I have been suffering with strange symptoms for last four years but no specialist has ever mentioned IIH. I have a very congested runny nose that does not stop pouring for at least 2 hours after been's a watery slightly sticky consistency that's clear in colour.I have throbbing nose roof of...

    0 replies 0 votes Posted
  • amy23506 1

    looking in from the outside

    Hello, so sad and sorry to hear all your bad experiences. I have a older sister who has been struggling with IIH for a couple of years and I still dont really understand. I feel so upset and angry that I cant help. She has had a number of luberpunctres and every time the doctor says its the highest pressure...

    2 replies 0 votes Last reply
  • sallycinnamon1 1

    CSF leak

    Hi, I have just been diagnosed with a cranial CSF leak- I've had a runny nose for the last couple of months out of just one nostril, headaches, dizziness and blocked ears. A sample tested positive for CSF and an MRI scan has shown a possible hole/tear in the roof of the sinuses. I haven't had any head...

    2 replies 0 votes Last reply
  • FizzyVimto83 1

    Is it back after 5 year remission???

    I was diagnosed with iih at 21 after 18 month of being fobbed off, and told I was being dramatic. I was in my last few months at uni and my gp thought it was typical of a student nurse hypochondriac. Evidently it wasn't. I've had occasional flare ups and after each lumbar puncture my symptoms changed....

    0 replies 0 votes Posted
  • lostsoul999 1

    please help me!!

    I was diagnosed with ptc or iih 3 months ago and i will never forget how scared i was and still am. Last month my doc took me off diamox since papilledema is gone. Now about 20 days ago i started having heat on my face, i feel my eyes swallen not a headache though. I went to my opthalmologic he didn't...

    0 replies 0 votes Posted
  • jennifer 08036 2

    Possible IIH and could use encouragement

    Hi all, I have been sick now for going on seven months and the doctors just can't seem to diagnose me with anything for sure. I've been seeing a neurosurgeon who suspects I have IIH and saw possible swelling on my brain. This all began after I received a vaccine and The following day I had sudden severe...

    6 replies 0 votes Last reply
  • irene 90390 1

    Dizziness and heart palpitations

    Hi my neuro surgeon thinks I have IHH. MRI shows slit like lateral ventricles plus empty sella syndrome. Symptoms started 6 weeks after spinal fusion. Has anyone suffered with debilitating dizziness. Feels like my brain is swimming in my skull. The only thing that helps is lying down, I get palpitations...

    0 replies 1 vote Posted
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