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Idiopathic Intracranial Hypertension

Also known as Benign Intracranial Hypertension

Can you help? Discussions needing a reply

  • Lumba puncture

    So its been a while since i last came on here so thought id give you all abit of an update on me, So i had a diagnosis of having mild iih in march after struggling for over a year with the pressure headaches pulsatile tinnitus loss of balance slight memory loss & issues with sensitivity to …

  • IIH - contraception?

    Hello, I know this group is probably to discuss treatment and pain of IIH which is understandable. However, I was wondering what everyone uses in the form of contraception? When I was diagnosed I was taken off my pill and ‘unofficially’ told that it was likely this that had caused it, but there isn’ …

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  • Lumba puncture

    So its been a while since i last came on here so thought id give you all abit of an update on me, So i had a diagnosis of having mild iih in march after struggling for over a year with the pressure headaches pulsatile tinnitus loss of balance slight memory loss & issues with sensitivity to …

    Posted
  • Waiting with IIH. How to cope?

    Hi, my name is Victoria. I was diagnosed with IIH in February. Since then it's been a rocky road of trying medication after medication with no relief of symptoms and a lot of side effects on top of a lot of pain and vision disturbances. Two months ago, my neurologist said he couldn't assist …

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  • IIH - contraception?

    Hello, I know this group is probably to discuss treatment and pain of IIH which is understandable. However, I was wondering what everyone uses in the form of contraception? When I was diagnosed I was taken off my pill and ‘unofficially’ told that it was likely this that had caused it, but there isn’ …

    Posted
  • IIH DIAGNOSIS FEELING VERY POORLEY

    At the end of April I woke up one morning with a headache which had never went away , a throbbing pain headache affecting my vision. After 2 weeks I visited GP and optician optician referred me  urgently to neurology. The day after I ended up calling for an ambulance I woke up with shooting …

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  • Does this sound like IH?

    Here are my symptoms: Pressure in my face, feels like sinus pressure...around my eyes, in my cheeks, my nose, above my nose, my temples. My neck has been stiff/sore. My eyes feel like they have trouble focusing sometimes. I feel off balance when I walk. I went to the ER for this and they did a CT, …

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  • IIH

    I got diagnosed with IIH last may, I was 17 at time of being diagnosed, my experience was quite horrific tbh, doctors left me for weeks putting it down to migraines until I couldn't see, was having loads of noes bleeds and the only way I can describe the headache was someone pulling a burning …

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  • Possible IIH? Very nervous

    Hi.  I posted this in the neurological forum but think this may be a better place for it.  Please see below.  Thanks! Around 2 weeks ago, I was feeling totally fine and all of a sudden while walking, I experienced severe dizziness and a feeling of rocking back and forth.  I …

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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 …

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  • I had IIH at 16. Sharing a bit of my journey.

    Hi. Nearly 3 years ago, I started having symptoms of nerve tingling up and down my arm. Eventually I had the headaches which of course lead to the nausea. I went to my GP a few times and they just said it's a common migraine or a virus and gave me some meds. A few days later, I was looking …

    Posted
  • Pregnant on Diamox

    Has anyone ever been on Diamox and gotten pregnant?  If so, did your doctor ween you off of Diamox?  When the baby was born was s/he ok?

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  • Work and IIH?

    Hi, my name is Aimee and I was diagnosed with IIH about a month ago. I woke up one Saturday morning with blurry, double vision and a headache unlike any headache I'd ever had. And I suffer from migraines so I know headaches. This felt like that scene where the Alien attached itself to the minor …

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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 …

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  • Need answers please! Pregnancy and Diamox

    I am 34 years old and in December, 2017 my husband and I made the decision to begin our journey to try and get pregnant.  Well, at my January neurology visit I was diagnosed with IIH and my doc said do not get pregnant while taking it (he told me this at 2 separate visits).  I told him …

    Posted
  • 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 …

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  • Pregnancy and iih

    HI My daughter has gad iih for approx 5yrs now, she is 33, and was diagnosed not long after her son was born. Shehas been on diamox all this time and has coped really well. She is now pregnant again approx 10wks, and has stopped her meds as per drs advice, but obviously is struggling somewhat, she …

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  • IIH and wondering if anyone else experiences this pain

    I am on Diamox 1000/day and have been diagnosed with IIH.  When I get a headache or migraine, one symptom I have is facial pain.  Specifically, the left side of my face around my cheek bone and up to the temple will hurt. There have been times, lately, that my face hurts before an iih …

    Posted
  • Head pulse feeling

    This pulse feeling in my head at night wakes me up with dry mouth and I have to urine I do drink a lot of water during the night .my left ear I been feeling like it’s clougged and I get post nasal drip 

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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 …

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  • I believe I have Psuedotumor Cerebri...

    At the end of 2015 I went into the hospital after having a headache for 95 days straight. My neurologist wanted some test run and admitted me. After an MRI and an MRA they determined they couldn't really see anything and wanted to do a spinal tap just to rule out anything severe. The opening …

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  • Do You Have these IIH Symtoms?

    Hi, does any of this sound familiar? I generally wake up feeling good.  Within an hour of being upright, my hearing become muffled, kind of like being underwater.  It comes and goes at times. At any time, if I cough, sneeze, strain, or bend over I feel pain in the top of my head. But …

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  • Just been diagnosed

    Hi everyone, my name is Laura and I just got diagnosed with this condition last Tuesday. I'm 25 and really scared about what is going to happen. Is there any advice from anyone that has this?

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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? …

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  • New, scary journey - need your advice

    Hi fellow IIH’ers I was reluctant to join one of these groups but figured I’d done enough googling this last month (and hate myself for it after but espesh with this condition doctors can’t tell you s**t so you find yourself having no choice but to find your own info)  -so  I may as well …

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  • Mild iih

    Just been diagnosed with mild iih what does this mean & what happens next?

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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 …

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  • Nerve damage?

    Does anyone have nerve damage that is attributed to their intracranial hypertension?  Symptoms of that can be muscle wasting/atrophy, burning sensations, or muscle weakness?

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  • New to all this, pre lumba

    Hi all i was told 3 days ago i have fluid pressure on the brain & falling into the category of having iih iv been having optician & hospital appointments for the past 13 months, iv been struggling with alot of pressure headaches i have constant pulsating in my right ear & ringing every …

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  • Just diagnosed

    I was just diagnosed with iih . What can I do to help the symptoms? Unlike most people I can’t get spinal taps cause I was also diagnosed with blood clots on and in my brain and the dr has me on blood thinners for the blood clots and also 1000 mg of diamox for the pressure. But the pressure and …

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  • Struggling to get an IIH diagnosis.

    Don’t get me wrong, I don’t want IIH, but I do want to preserve my vision and relieve my symptoms. I have had constant and sometimes overwhelming head and neck pain since January 3. Additionally, I am dizzy, lightheaded, nauseous, and have ringing in my ears. I have episodes of blurred and double …

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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 …

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  • Social Security

    My Daughter has been suffering from I H for 2 years shes an adult. And will sign up here sometime today. This is1 of 2 questions we have. Has anyone had success applying for social security? At this point she does not feel she can return to work as a substitute teacher, and office assistant, …

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