I Have Idiopathic Intracranial Hypertension

Idiopathic Intracranial Hypertension anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Idiopathic Intracranial Hypertension. You're not alone. 276 People

    Triple Diagnosis, One Disease. I'm Tired.

    Hi.  I am Angel, and I am currently 21 years old, and on my "third bout" with PtC.  I was originally diagnosed with PtC when I was 13 years old.  It first started with the headaches, and they got increasingly worse.    Mom took me to...
    bing1776 bing1776
    18-21, F
    1 Response Jan 5, 2010

    My Wife

    My wife has lived with this for 15 years. Having a hard time this time with her coming out of remission. Mostly because I work on the road and can't be home to help her or take care of the kids she has blessed me with.
    deleted deleted
    Sep 30, 2012

    Not a great day!! I had a fluoroscopy done today

    which is a spinal tap under X-ray and I have a major friggin headache!! I just want my life back and a cure for this terrible disease!!
    cynthiashortridge cynthiashortridge
    36-40, F
    1 Response Aug 13, 2015

    My Idiopathic Intracranial Hypertension <3

    Im 19 Now , but I have had IiH since I was 15. This Has been a long Long Road For me... It all Started When I first Started getting Bad headaches in Highschool, and Vison Loss. I seen Multiple Docotors who could not tell me anything. Finally a Eye Specialist told me My Optic...
    Lamiece Lamiece
    Nov 22, 2012

    Diagnosed With Benign Intracranial Hypertension (2010)

    Hi, I have just been diagnosed with benign Intracranial Hypertension, and was looking for some info or other people's personal stories when I came across this site, so I decided I would explain what happened to me. I'm 30 years old and a mother to 4 young children. 2 weeks ago I...
    marykly marykly
    4 Responses Sep 17, 2010

    I spend most of my time with one eye closed.

    They drained some fluid off my brain and it helped a little.
    90toforty 90toforty
    46-50, F
    Feb 3, 2014

    Raise Awareness

    Please look at my website and all it has to offer to raise awareness for IIH. I am also asking for the part that says -Your Story- you send me an email through my website and attach a pic only if you like telling me your story. I will then post it on the website in that section...
    emilyboyd2222 emilyboyd2222
    26-30, F
    Sep 25, 2013

    I Have Iih , I'm 19

    I'm 19 and ways been fairly fit and healthy, never really any serious health issues. However back in march time last year (2012) I started to put on an incredible amount if weight, in total over a period of 6 months I think I put on around 2 stone at least. Now I eat pretty...
    Frogfaceflower Frogfaceflower
    18-21, F
    Jan 20, 2013

    I was diagnosed with what my doctors called

    pseudotumor cerebri just a few months ago. I'm just shy of 19, and I weigh 304 lbs. What helped set it all off though was taking a certain birth control pill for hormone regulation. I ended up having a 5 day long migraine while I was away at school. When I went in, we couldn't...
    kuypercollegegirl kuypercollegegirl
    22-25, F
    Jan 19, 2014

    Out Of The Blue!

    Hi, my names Gemma and i'm 27 years old. It all started about 3 weeks before Christmas 2010, i would wake up each morning with a slight headache. This was'nt completely abnormal for me so i dismissed it as they would soon go off by midday, however within the next few days i...
    evaheidi evaheidi
    1 Response Jan 16, 2011

    I have good days and bad days.

    My disease doesn't always present itself with pain. In fact, most of my bad days show up as confusion, anger, tinnitus, memory lapse and lowered levels of intelligence. I used to be what most people would consider intelligent. I had straight A's in college, recieved an...
    Annadick Annadick
    31-35, F
    Nov 13, 2015

    am very tired from since i have ih i have a

    trouble vision does my vision return normal ? i spent one month with this disaster please answer me? i want my vision to return
    lama12 lama12
    22-25, F
    Jan 17, 2014

    New Diagnosis

    About a year ago I started gaining weight really fast and by three months I gained over 50 pounds. I am now up to 236 and still gaining. I started getting horrible headaches four or five months ago and they tried migraine meds and nothing worked. Then two months ago I started...
    pinkaurora pinkaurora
    36-40, F
    2 Responses Apr 16, 2013

    Csf Leak Repair, Recently Diagnosed With Ih... Many Questions....

    December 2008/January 2009, I was at work speaking with a co-worker when my right nostril started pouring clear, odorless, tasteless fluid. We laughed, and I joked that I either had the cold from hell, or my brain was leaking out of my nose. Little did I know. I went home, went...
    kaity80 kaity80
    14 Responses Dec 10, 2010

    Life Changing

    I had been struggling with what I thought was the worst headache ever for months till 10 days before i was rushed into hospital , when it got so bad  i had stopped eating , ( the first stage of my world changing )all i was seeing was ghosts of everything . I went to sleep with...
    teepee1907 teepee1907
    51-55, F
    1 Response Mar 3, 2013

    I have always experienced pretty serious

    migraines and about a year ago my headaches were getting so bad I wondered if there was something wrong with my eyes. I would have double vision, flashing lights (almost like a strobe light) and weird spots in my vision. I went to an optometrist at a local office. The first time...
    rowdyred rowdyred
    Dec 4, 2013

    Help Confused :(

    so I started with awful migraines about four weeks ago then my face dropped I was told it was bells palsy. then I started with bad double vision. went. to the doctor got referred to the neurologist had ct scan a lumbar puncture. all my other symptoms have nearly gone but my eyes...
    donnahuscroft donnahuscroft
    26-30, F
    2 Responses Mar 29, 2013

    Diagnosed For Iih

    Hello! I'm a 26- year old female. I got diagnosed with Idiopathic Intercranial Hypertension nearly a month ago. Since the beginning of the year I had noticed changes in my vision ( thought this was due to high blood sugar) and hearing and was suffering from severe...
    stephipenn stephipenn
    26-30, F
    21 Responses Sep 15, 2009

    Need Shunt Advice Asap....

    My name is Grace, 24 years old and from Ireland. I will just start by giving you a little bit off my health backround......at the age off 12 i started getting abcesses all over my body and after 10 years off surgery they finally diagnosed me with Hydranitus Supractivia (HS). I...
    NewbieIIH NewbieIIH
    5 Responses Feb 22, 2011

    I Have This Stupid Condition..

    I was 28 weeks pregnant when i became blind in my left eye..i went to the hosp and after a crazy amounts of tests and scans and what not i had a spinal tap which was 47..normal pressure as we all know is 7-20.. Anywho to make a long story short i had emergency eye surgery that...
    acarmody28 acarmody28
    31-35, F
    1 Response Jul 11, 2013

    Is It Nap Time Yet?

    It's been three long years of being tossed from doctor to doctor. I've been to the doctor's about 30 times in the past year alone, and I've given them enough of my bodily fluids to make a whole new person. No one really believed anything was wrong with me at first - how could...
    FruitCups FruitCups
    18-21, F
    1 Response Feb 5, 2013

    Advice To Educate Yourself On Iih (pseudotumor Cerebri)

    If you don't already belong, let me beg you to please go to  www.ihrfoundation.org   .  This site educates and is constantly seeking membersto use in research as they frantically try to find answers to this rare and misunderstood condition.  I have found that when you seek...
    nknj75 nknj75
    3 Responses Jan 16, 2012

    I Have Iih

    This disorder has so many names but not alot of research or resources about what it truly is. I was diagnosed in June 2012 after a lumbar puncture with a very high opening pressure and I am now on diamox three times a day . It is such a strange disorder as you can look really...
    3 Responses Nov 15, 2012

    I was diagnosed 6 years ago.

    I've had 25 spinal taps in the last year in a half. I'm on 9 tab 250mg diamox a day. I'm sick everyday and a headache on top of it. I have an 11 year old boy and a 3 year old boy. I try not to let my boys see me sick and try to live a normal life...lol normal life with tingly...
    andrea413314 andrea413314
    31-35, F
    Dec 29, 2013

    I am 20 years old and recently been diagnosed

    with IIH currently in hospital after a week of being very poorly. I am 5 foot 5 and weigh around 10 stone (62kg) Started as I went to the opticians as I had one pupil larger than the other and got sent straight to hospital because my brain was so swollen it was pressing right on...
    elliemaystatham elliemaystatham
    22-25, F
    Feb 14, 2015

    My Story So Far With Iih

    At the end of 2010 I was getting headaches, my eyes were getting sore. I then started getting what felt like dizzy spells that distorted my vision. Nothing helped the headaches. I woke up with them and went to bed with them. By January 2011 I was actually losing my vision...
    findingalisa findingalisa
    2 Responses Nov 20, 2012

    Maybe My 4th Relapse

    So I'm 20 years old and I've been diagnosed with IIH since I was around 17 turning 18. I recall the experience of finding out I had IIH being very scary, for at first I thought I had a tumour as the symptoms of both can be rather simular. It started...
    MissPurity2 MissPurity2
    18-21, F
    1 Response Jan 21, 2010

    9 Months & 9 Lumbers

    Hiya, I was diagnosed in may 2012 after seeing my optician with bad vision had papilliodema in both eyes and upon being rushed to hospital and performing a lumber puncture my fluid was 38. Anyway have since had 9 lumber punctures, take 1000mg of diamox daily plus 2 water tablet...
    2 Responses Jan 19, 2013

    Tramadol Dreams

    Hi all, I have been living with this horrible condition for about fifteen years now.  I first realised something was wrong when my vision became distorted and I became so tired that I could sleep anywhere.  The pain, cunfusion and glorious screaming in my ears came a...
    kimikazi kimikazi
    51-55, F
    3 Responses Oct 9, 2009

    Learning To Live With IIH

    I was diagnosed with idiopathic intracranial hypertension in 2008. I was a senior in high school. Walking through the halls of school, after having a severe migraine, I lost all peripheral vision in both eyes. From the end of 2008 to the beginning of this year I have not have any...
    ajhayley ajhayley
    26-30, F
    Jun 26, 2013

    I was officially diagnosed with IIH yesterday.

    10 days ago I went to bed with a really bad headache and woke up at about 2 in the morning with severe vomiting. I was then taken to A&E at about 9 that morning where I stood up and fainted, and I was then admitted to hospital, where I still am. I was originally being treated...
    Hannarr Hannarr
    22-25, F
    1 Response Jan 12, 2015

    IIH: The Nightmare That You Never Wake From.

    I was diagnosed with IIH back in 2007 when it was primarily called Pseudo Tumor Cerebri. After numerous trips to different doctors who couldn't find anything "wrong" with me, I thought maybe I was making it up or I was going to have to live this way forever. I was in the middle...
    kbennyl kbennyl
    41-45, F
    3 Responses Aug 26, 2013

    Finally Have Answers!

             Well to start out all this started in september of 2010. I had finally got insurance through my work so I decided to go to the eye dr. to see if i needed glasses because I would get these really severe headaches. Well it was decided that I need glasses for daily...
    OpalSay OpalSay
    26-30, F
    4 Responses Aug 13, 2011

    I was diagnosed October 2012.

    I had severe headaches every now and then since childhood; but noticed vision changes approximately 2-3 years before diagnosis. I thought it was just the normal process of aging since I was in my late forties. I had also put on some weight which was well needed considering I was...
    jojop2014 jojop2014
    51-55, F
    1 Response May 21, 2014

    Please Help In Describing Your Symptoms

    I've had IIH for four years. Fortunately, I did not lose my vision but instead, my eye was pushed forward correcting my eyesight back to normal. However, I struggle daily with body pain. Horrible joint pain, neck and shoulder pain and now my right arm hurts daily. My hand gets...
    boohootie boohootie
    41-45, F
    6 Responses Dec 4, 2012

    Iih And Pregnant

    Hello! I was diagnosed with IIH about 6 years ago when I had horrible headaches. I had one lumbar puncture and was on meds and it "cleared up" quickly. I just had another "bout" with it after gaining some weight. I had a lumbar puncture again and was on meds for about 6...
    1 Response Jan 19, 2013

    Could This Be Iih?

    A warm hello to all those on here. I am really hoping for some responses as I think I may have this condition and would very much appreciate some reassurance before I see my GP on Thursday. First of all, allow me to state that I do have other diagnosed medical conditions. I...
    spadeboy spadeboy
    41-45, M
    Nov 25, 2012

    My Life With Iih

    my battle with IH started in 2002, when I was 37. The primo age!  In March, I had a routine eye exam, which as usual, said I had 20/20 vision.  In May, I started having headaches, which I chalked up to the stress of raising 3 17 year old kids!  But then...
    Mistyzehr Mistyzehr
    41-45, F
    3 Responses Oct 31, 2009


    My name is Shannon and I live in Florida. I was diagnosed with IH about 2 years ago. I have had off and on migraines for about 8 years before hand but they would come and go or I would end up in the ER to get a shot for migraines. It was only when my vision started going wonky...
    shannon33 shannon33
    31-35, F
    2 Responses Apr 21, 2011

    I don't really know a lot about this condition

    yet as I've only been diagnosed with it for a couple of months now and it became noticeable a couple months before that. I was at work one day and all of a sudden I just didn't feel right. I thought I was overtired and stressed because we had just gotten through a hectic period...
    openuptothepossibilities openuptothepossibilities
    31-35, F
    1 Response Feb 25, 2014

    IH and Me

    I went to what I thought was a routine eye exam (with my 4 year old son in tow, he wears glasses too) on Tuesday [March 4 2008]. The optometrist FREAKED OUT and started talking about brain tumors and MRIs and spinal taps in the middle of my exam. I did have an MRI that...
    goofygoober168 goofygoober168
    10 Responses Jul 19, 2008


    I was just diagnosed with IIH but not on any medication yet. It's been that way for about 3 months and I'm freaking out. The constant pain is breaking me physically and emotionally. I've never been more depressed in my life. It doesn't seem like anybody understands it. I have a...
    thatkid27 thatkid27
    22-25, F
    2 Responses Nov 1, 2013

    I am 17 and have been suffering with IIH

    for two years now. I have been in and out of the doctors, getting tests and after tests. It took the Doctor approx 8 months to diagnose me. I have been suffering with extreme depression, feeling alone. I just wish i could have my life back, now everyone who knows what I have...
    sarahswim sarahswim
    18-21, F
    Sep 2, 2015

    My Story

    Hi everyone, im 32 yrs old and have hadPTC for two long years, Im on 1500mg of Diamox twice a day, Ive had over 13 spinaltaps recently im doing them every 21 days or so, I have a LP Shunt, Headaches dailyLost alot of my vision, I feel like no one understands everything im...
    purpletigger1313 purpletigger1313
    31-35, F
    6 Responses Aug 2, 2011


    I have had intracranial hypertension for 4 years. I have a vp shunt and revision still have headaches. I take numerous medication and have a hard time trying to work migraines for days.
    Pokita99 Pokita99
    31-35, F
    Feb 1, 2013
More Stories