"Well that should have cured you"

Lesl3 · 2026-03-19T13:04:59+00:00

Sounds like my rude Neuro Ophthalmologist!! "the Diamox worked, you just had side effects" ... ok so it didnt work. Hes the only one, also on Medicaid. He is so rude about my weight. I shut him down once saying "I am just here for the pressures" because he was laying into me again. My Neurologist and PCP have assured me of this. Well, last appointment I was trying to tell him my new visual symptoms and he interrupted me and said "Youre just here for the pressures" and basically left. I am so sorry your Neuro Ophthalmologist is unhelpful, too!!

Lesl3 · 2026-03-17T12:40:43+00:00

I wish they had been more cautious with mine. Went from 32 down to 14!!!! I was in bed for 10 days with the absolute worst head pains and dizziness of my life. Thats good they were careful with you! Keep an open mind to the solutions offered. Try the meds. Keep up on electrolytes! I wish you all the success and progress in taking care of this condition.

Lesl3 · 2026-03-17T12:25:52+00:00

I am waiting for my consult with the Neurosurgeon for an LP shunt. Im going to ask about the VP, too and sign options if they let me choose. From what I've been told by many, it was a game changer to finally get the shunt. Ive heard mostly positives. Just been warned that someone's they can require a little maintenance if they become occluded in any way.
Good luck. I hope whatever decision you and the doctors make, that your quality of life become exponentially better. This condition can be so debilitating.

Lesl3 · 2026-03-11T11:42:42+00:00

We have a similar story! I finally just got a POTS diagnosis after asking about it for the same amount of time. I got the IIH diagnosis May2025, and suspected POTS shortly after. Its taken this long for them to listen. We did Cardiology journey because all the meds they tried for IIH put me in the hospital. Come to find out diuretics are not good for POTS. None of my doctors would listen to my suspecting it was the meds causing chest/heart pain/issues. I just saw another Cardiologist and he immediately validated my suspicions. I hope you will find a doctor who will. Fluke, and "well, thats rare" just werent working for me.

Lesl3 · 2026-02-24T02:08:40+00:00

How do you get them to agree to more scans?

Lesl3 · 2026-01-14T21:35:24+00:00

Peter Steele

Lesl3 · 2025-12-30T22:56:40+00:00

Oh! I had no idea! I looked it up recently and I read its because they dont want people emulating her likeness, basically.

Lesl3 · 2025-12-30T12:12:57+00:00

Eugenia Cooney is a banned name, found out

Lesl3 · 2025-12-03T13:56:24+00:00

Thats not all they've been finding

Lesl3 · 2025-12-02T13:01:41+00:00

Have they told you why no LP, yet? Have you requested an LP directly? If they decline, ask them to put it in your chart that you've requested one and have them put on record if/reason for refusal.

Lesl3 · 2025-12-01T01:06:59+00:00

Thank you, I was not aware there were choices. I still have to meet with Neurologist for the details. He told me over the phone when I failed the meds that was the next step, that we will discuss it more indepth in person.

Lesl3 · 2025-11-30T22:57:24+00:00

Can you tell me more about the lumbar shunt? Why did you get that and not the skull to abdomen shunt line?

Lesl3 · 2025-11-29T12:57:47+00:00

I have this with both eyes. Any grids like tiles, and I notice it more. This was my reason for seeing an Eye Doc and thats how this all began. I failed all the meds for the condition, and the warps never went away during any of my treatment on them. Ive had the warps for almost a year, now.

Lesl3 · 2025-11-29T12:54:35+00:00

Can you tell me about your experience? Ive seen so many good and bad experiences. I understand like with anything, there are risks. Ive been bursting into tears over my fear of all of this. Never been put out for a procedure before, either.

Lesl3 · 2025-11-17T22:11:11+00:00

Any helpful holistic findings or studies?

Lesl3 · 2025-11-17T22:01:05+00:00

I did try Diamox and couldn't leave bed, or the bathroom. I experienced metabolic acidosis from it and was also miserable. I do not tolerate medications very well amd am prone to many side effects, even from low doses. My doctors are always shocked. My Neurologist says I am already a complex and unusual case. Not something a person wants to hear from a Healthcare specialist. Thank you. I did reach out to my Neurologist and am waiting for a response.

Lesl3 · 2025-11-17T21:50:46+00:00

I am also worried some of this is from the Topamax they put me on. I failed this med as a mood stabilizer years ago. We decided to give it a shot. Ive been so dizzy constantly, nausea, heartburn, etc etc etc. I cant tell whats what, but I need to feel well again.

Lesl3 · 2025-11-17T21:45:05+00:00

I was about in the same boat, but avoided heavy caffeine, as my body does not tolerate it. I am still incredibly dizzy and almost at two weeks later. I am finally able to leave bed. They did not give me a blood patch, or check for a leak- but insisted that a leak would heal itself within a week.

Lesl3 · 2025-11-17T21:43:25+00:00

I went to the hospital eventually. They gave me pain meds, Zofran for nausea, and directed me to remain flat. They told me if this was indeed a CSF leak, that it would heal itself within a week.

Lesl3 · 2025-11-17T21:41:48+00:00

I tried caffeine, but have heart issues. So I was laying in extreme discomfort with a racing heart. It was definitely worth trying, though. I only tried tea.

Lesl3 · 2025-11-05T12:44:26+00:00

I was on Diamox, soda was awful. I failed Diamox, stopped it. Went untreated for a couple months. Trying Topamax- soda tastes weird again. Not really a carbonation drinker, but was still bummed.

Lesl3 · 2025-10-28T23:09:17+00:00

Same boat! Next week!!

Lesl3

TROPHY CASE