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Idiopathic Intracranial Hypertension

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  • sarah53175 1
  • 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?

    7 replies 1 vote Last reply
  • 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 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

    3 replies 0 votes Last reply
  • corbin28 2
  • 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

    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

    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

    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.

    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

    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

    0 replies 0 votes Posted
  • Susie T 2
  • 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

    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'

    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

    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

    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

    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

    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

    8 replies 0 votes Last reply
  • 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

    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

    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

    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

    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'

    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

    6 replies 0 votes Last reply
  • 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

    7 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

    0 replies 1 vote Posted
  • lynn19591 1
  • chad21267 1

    Pressure in my head, although MRI scan was normal?

    Hello.. I'm a 19 year old male and I've been suffering from a mild pressure in my head in different regions from time to time (not a constant feeling), and when the pressure is gone, I get a weakness feeling like I'm about to faint if I don't move my body or exercise. Other signs and symptoms,

    1 reply 2 votes Last reply
  • sydnney 2

    Just went to the doctor: normal pressure, but I have headaches

    Hi, I'm 19 yrs old and I just had my eyes checked and the pressure was fine, and has actually gone down now that i've lost about 20 pounds. but now im getting a bad headache that i can tell changes when sitting versus standing (standing is better). Is it normal to get headaches like this but still

    3 replies 0 votes Last reply
  • sally12646 2

    Lumbar puncture/spinal type

    Hi all After an eye test last week they found sweeping of my optic nerves, since then I have had loads of different eye tests and an mri! Everything came back clear, so next they said they had to do a lumbar puncture, so yesterday I went back where they attempted 4 times and failed, (my body fails

    1 reply 0 votes Last reply
  • Nami81 2

    IIH or PTC

    I have extreme loss of balance or vertigo. I was diagnosed with IIH and Im on a low dose of diamox. My pressure is not that high. I have swelling in my optic nerves, again not too much, but enough to affect my vision. I see light streaks and spots, enough that I sometimes have to stop working for a

    0 replies 0 votes Posted
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