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Idiopathic Intracranial Hypertension

Also known as Benign Intracranial Hypertension

All discussions in this group

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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 character's...

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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 seems...

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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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  • 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 headache...

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  • 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 like...

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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 pressure...

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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 otherwise,...

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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? Should...

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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 get...

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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 blurring,...

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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 so...

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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 stiffness...

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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 vision....

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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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  • 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, although...

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  • Secondary intracranial hypertension

    Hi everyone. My name is Ashley and I’ve been experiencing head pressure, dizziness, brain fog, and a sort of altered state of consciousness so to speak. Has anyone experienced the change in consciousness with intracranial hypertension? My story: I am 37. I am a mother, a student, a Sunday school teacher,...

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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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  • 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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  • 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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  • 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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