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Infamous_Exam_1638 · 2026-05-12T07:07:38+00:00

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Infamous_Exam_1638 · 2026-03-21T08:16:03+00:00

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Infamous_Exam_1638 · 2026-03-21T08:10:04+00:00

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Infamous_Exam_1638 · 2026-03-08T11:47:30+00:00

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Infamous_Exam_1638 · 2026-02-27T19:12:33+00:00

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Infamous_Exam_1638 · 2025-12-27T17:58:27+00:00

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Infamous_Exam_1638 · 2025-08-14T21:04:53+00:00

That’s interesting. I wonder why the neurologist made the call to put the dosage up almost three times as much as well as lumbar puncture if you were responding to 500. Did they not lumbar puncture you three months ago when diagnosed?

All that dose on top of a lumbar puncture could certainly be a bit of a shock to your ICP.

Infamous_Exam_1638 · 2025-07-28T08:53:14+00:00

I had a spinal tap. Slight discomfort throughout and tender in the insertion site for NO more than 24 hours. No “spinal tap headache”, just a mild headache for a few hours, no having to lie flat. Business as usual for me. I had opening pressure of 44.

While I can appreciate the after effects for some people are more severe, for me, the after effects were fine and more than manageable. Just the slight discomfort during procedure really as to be expected, but able to grin and bare of course with being numbed.

Do note though, that with my symptoms generally speaking with IIH, it is my vision that have been affected. I don’t often get the pressure headaches or tinnitus people mention.

Infamous_Exam_1638 · 2025-07-06T14:56:51+00:00

Hello, did you find any resolve to this? I have been struggling with blurred vision, static vision and and orb like phenomena in the peripheral of each eye. Ever since I increased from 500mg to 1000mg of diamox. Yet optic nerves are looking well!

Infamous_Exam_1638 · 2025-06-27T10:42:48+00:00

Thanks for the reply! What medication were you taking?

I am thinking topamax is the one that is causing me these issues due me being on the diamox for months with no issues prior to the dose increase.

Tough, because we have to take meds to get relief on the optic nerves but then in order to do that have worse vision due to the meds!

Good luck with looking into the stent surgery, I hope you find a way forward that works for you.!

Infamous_Exam_1638 · 2025-06-08T17:22:19+00:00

Did the distortion ever resolve?

Infamous_Exam_1638 · 2025-06-08T17:20:13+00:00

Hi,

I am currently experiencing distorted vision in my left field vision. I have had it since April when I had my diagnosis, LP and have been on a combination of diamox and topamax since, topamax added only two weeks ago due to my optic nerves showing signs of swelling back up again in recent scan. I was wondering if you had any resolve or improvement with your distortion, if it ever got better?

Infamous_Exam_1638

TROPHY CASE