u/Calicomom91

Bit of an oddity.

In May 2024, I was put on 2000mg of Diamox. I had stenting done July 2024. I was taken off Diamox in early May 2025.

I was put back on Diamox 2 weeks ago. Started at 250mg 2xs/ day, went up to 250mg in the morning & 500 mg at night.

I have a Sulfa allergy. But, nothing happened to me in the year I took Diamox 2024-2025

Now, for the last week or so, I am suffering with:

A cough that produces a lot of mucus

A very itchy body shortly after taking my larger dose at night

Hives on my arms

Sneezing so much

Itchy ears, face, and tonight, a mildly swollen bottom lip

Occaisional wheezing (I do have asthma, but it's not major as I've had it since birth)

At this hour, no pharmacy is open to consult with. I haven't gotten a full night's sleep since the increased dose change last week. Topping it all off that I do have Bipolar 1 disorder. This is no picnic and I'm only supposed to be on Diamox awaiting surgery now.

Has anyone faced this or anything similar?

My Sulfa allergy is mild and only ever resulted in Hives.

My body feels like it's on fire & I'm afraid to take an anti histamine due to the number of meds I'm on.

Hi there!

I had a stent put in July 2024.

Things were ok for a few months.

Then, I started getting more sick. The pressure, pain, high LP, CT showing excessive CSF in my brain.

I'm now on bedrest awaiting surgery for a VP Shunt.

May I please have some dos or donts for the surgery?

I have received 3 surgeons opinions on what to do & if this seems right for me. They are leaning less of me having IIH ,but rather a genetic condition that my little cousin has as well (we are 17 years apart). My neurosurgeon also did her stenting.

Thanks for your help with this. I really appreciate it. I'm pretty scared, but very ready to feel better.

Hi there

Looking for some advice from those IIH'ers who have incurred hydrops of the optic nerve sheath complexes (stigmata of iih) that was found on a CT.

I have been suffering a long time.

I was stented on my right side in 2024. I was well for about 6 months. Then, the pressure intensified.

I went to the ER last night as I was in so much pain & I'm struggling with my vision. The CT showed that the Stent was in the correct place and doing it's job. But, there was issues with the optic nerve sheath as indicated above. Neurosurgery is saying no more LPs for me as it makes my pressure much worse. I have lost 88 lbs from starting weight of 262 lbs. They believe my IH is due to genetics.

For those of you who have been through this, what was your treatment plan? What questions should I ask my neurosurgeon that can help me manage?

Thanks so much for your help. Feel free to ask me anything about my journey through.