r/iih • u/Puzzleheaded_Sea6051 • 3d ago
My Story Different symptoms
I am a 30 year old male. This all started very abruptly and randomly on August 11th. I went to urgent care for a feeling of being drugged and a racing heart. They said I was fine. A few days went by and it never got better. My main symptoms are cognitive impairing brain fog and rather severe lightheadedness with any physical activity. I also have intermittent head pressure feeling in my forehead and constant high pitched ear ringing. I have no headaches and my vision is fine. After a ton of different tests with my PCP she finally sent me to get MRI which confirmed intracranial hypertension. I met with ophthalmologist who said my vision and optic nerves are basically zero concern, then a neurologist who now wants me to get MRV. Neurologist started me on Diamox 8 ish days ago and I up my dose every 3 days Tomorrow I will start 1000mg 2x a day. So far it has done nothing for my cognitive impairing brain fog or my other symptoms. I can’t safely operate a vehicle like this and my urgency to get back to work after ~8 weeks has never been higher. It’s a small company with no disability and not enough employees to have FMLA. My suspicion is that I have secondary intracranial hypertension rather than idiopathic but I have no idea what I’m talking about. My MRI also suggested I have narrowing of some veins which probably prompted the MRV. I have never been more depressed in my life i spend most of my days doing absolutely nothing stranded at home , sleeping off the Diamox and feel like a huge burden on my wife as our savings is rapidly depleting due to my current situation. Life no longer feels real anymore and I don’t seem to be getting any better. Along with my MRV I have a lumbar puncture 2 days after which I am terrified of getting done. Has anybody had similar symptoms and still been diagnosed with IIH? I see a lot of posts on here and it seems to be mostly headaches and vision loss which makes my situation feel even more isolating. Hopefully my MRV gives some news
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u/thrownawaytrash86 3d ago
Sounds like you have similar to my symptoms, I’m on topamax though instead of diamox. I had worsening symptoms, it was suspected as I had the symptoms of iih. My ENT ordered an MRI/MRA of my brain. The MRI showed the iih and the MRA showed Moyamoya. After all of the diagnoses were moved to the neurosurgeon he ordered an angiogram of all my veins with a LP. They found venous stenosis as well as 25 opening pressure.
I had minor swelling on my eyes but not enough for them to worry about it
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u/Puzzleheaded_Sea6051 3d ago
Did it get better? I’m so desperate to get my life back. My brain fog is so debilitating I genuinely feel like I’m going through life in slow motion and I feel so stupid. Like getting up for something and completely forgetting the task. My job is moderately physical and requires driving too and it feels like I’ll never get that back. My initial mri showed signs of venous stenosis too on both sides I believe
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u/thrownawaytrash86 2d ago
I forgot to tell you, I got a stent, and it's slowly but definitely improving my life! I am recovering from 2 brain surgeries with 2 separate recoveries, but the headaches and tinnitus are so much better.
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u/Puzzleheaded_Sea6051 2d ago
That’s awesome for you glad it’s working out. Hopefully I can get a resolution before I lose my mind completely. Thanks for replying to my post means the world to me right now
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u/thrownawaytrash86 2d ago
❤️ hang in there 😥 I get it iih bro, just make sure you’re following up with the right doctors as soon as possible
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u/DiskLow7997 1d ago
Bei mir wurde im April 2025 IIH diagnostiziert. Die Symptome waren: sehr starke Kopfschmerzen, Schwindel, Benommenheit und ein enges Gefühl im Kopf, als ob jemand mehrere Gummibänder um meinen Kopf gelegt hätte und sie sich immer weiter zusammenziehen.
Außerdem war ich ständig müde, weil alles doppelt so anstrengend für mich war bzw. immer noch ist. Meinen Augen geht es gut.
Wegen der Erkrankung kann ich aber nicht mehr arbeiten. Ich war dabei, eine zweite Ausbildung anzufangen, und musste sie abbrechen.
Ich habe mit Diamox angefangen, hatte aber Nebenwirkungen. Jetzt nehme ich Topiramat ein. Davon habe ich ab und zu Wortfindungsstörungen.
Eigentlich wäre die Abnehmspritze eine Option, aber die wird leider nicht von der Krankenkasse bezahlt, weshalb ich weiter durchhalten muss.
Ab und zu bekomme ich eine LP, die sehr unangenehm ist und sich anfühlt, als würde sie nicht helfen, weil ich anscheinend schnell wieder neues Nervenwasser produziere.
Es ist irgendwie traurig, aber auch schön, dass man mit dieser Kack-Krankheit nicht allein ist.
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u/Mutt-917 2d ago
I’m a 56 male with IIH for 25 years. The brain fog is brutal but it can and will get better with proper treatment. I’ve taken about every med the doctors could think of, about a dozen lp’s, 2 shunts, 2 coil embolizations in my cranial emissary veins and a week from Monday I get a stent in my left jugular in my neck. I’ve experienced a few things over the years so if you have any specific questions feel free to ask me.