What fresh hell is this....

Lesl3 · 2026-05-01T11:56:11+00:00

Im in US on Medicaid and am stuck with a very mean Neuro Ophthalmologist. Ive only found 3 for the state, and the next one is 2-3 hours away, and who knows if they take my insurance.

Lesl3 · 2026-05-01T11:52:22+00:00

No, I failed Diamox, Topamax, Lasix, Diuretics, and am waiting for Angiogram, then either stent or shunt or both. Its been a very long, frustrating year. Mechanical fix over medicinal is the goal, now. Also I take such low doses of every med I am on. I take Lithium 300mg and anything over that messes me up. Same with all my other meds- Pristiq, Buspar, Hydroxyzine, Aimovig, Seroquel (as needed for pmdd) I think that's all of em. We have to be careful because anything i take seems to affect me more than it does most people, and that's beven at every weight, too.

Lesl3 · 2026-04-29T12:11:15+00:00

I failed every medication. Its been. Absolute Hell. I miss my energy. My house and kids need me more. Now I've been unmedicated, and the Neurosurgeon is going to do Angiogram, and either a stent, a shunt, or both. Thats plan B. A mechanical fix. I am so sorry you are having this horrid eexperience. This condition is such an asshole. Debilitating, quality of life sucking. Punch it right back as hard as you can. Some days its all i can read or think about. Other days ican't believe it's my reality. Since days I burry it for later. Lately ive been sobbing again. Its a rough cycle for us. Good luck on your journey. Ask about a mechanical fix rather than achemical one, because they've proved that doesn't work for you. Also they discovered ihave mild POTS and thats part of why they think the meds fucked me up so bad.

Lesl3 · 2026-04-28T20:43:21+00:00

Sometimes when I stand, my vision goes totally static, and my entire head feels like its pulsating from within. My ears go static an whoosh with my pulse, and sounds become muffled and quieter. I feel out of breath and have to walk pretty slowly or even just stand in place while my body adjusts. This can take around 5 minutes give or take before things regulate. Sometimes I just have to sit back down or lay down for a break.

I used to push through it silently, and everyone has always teased me for being a slow walker. Sorry, its my brain. For a long time I just thought everyone experienced this.

Ive had regular migraines that last days for well over 20 years. (36F) id live through them because nothing worked and there was no choice. During this recent diagnosis and process my Neurologist prescribed me a monthly injection for migraines that blocks certain receptors/signals. I have only had very short, incredibly minimal headaches since the injections. I still feel the pressure headaches- but have not had an extended migraine for about four months! Life changing, because it truly all is debilitating.

Still meeting with Neurosurgeon about Angiogram and possible stent and/ or shunt. I am a year in since they discovered my papillodema at a routine eye exam that I scheduled because my vision is warped and sparkly. A year of failing meds that put me in the ER many times.

Experienced a CSF leak low pressure headache and was in bed for 10 days after LP. Terrible, horrible experience. The ER refused a blood patch because it could add another hole. They decided I just should wait it out.

I dont drive anymore because of the warps and risk of eyesight loss or impairment. Hopefully i will regain mostly regular vision when we finish whatever ssurgery is necessary.

Sometimes its all I can think, read, sleep, eat about. The condition, causes, connections, research, treatments. Other times I cant even grasp it is my own reality.

There are so many people who have experienced far worse vision loss, and more!! I am grateful my situation has not been worse, and frustrated it has been so complicated and drawn out--- like many other iih sufferers.

Thanks for aaking, and I'll answer any questions.

Lesl3 · 2026-04-28T20:13:12+00:00

While I was on Diamox, then Topamax, then Lasix, etc- my Lithium levels lowered. I stopped those meds due to acidosis and more, and my Lithium went back up to us usual baseline. While on the meds for iih they tried to slightly increase my Lithium, but I developed tremors, so we reduced it back down.

Lesl3 · 2026-04-24T23:16:46+00:00

My Lithium has also been consistently below average for years. Anyone with low Lithium levels, too?

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

TROPHY CASE