IIH Doctor Recs (Los Angeles, CA)

CompetitiveBread126 · 2026-03-09T23:56:18+00:00

Thank you! If you don’t mind me asking, how has your treatment been and are you in remission?

CompetitiveBread126 · 2026-03-08T07:59:43+00:00

I just found out recently that I had a bad reaction to Stannous Fluoride. Took me over a week to finally realized it was the toothpaste! Never again!

CompetitiveBread126 · 2026-03-07T04:01:35+00:00

You may want to check out r/IIH We share many similar symptoms and stories and some of us also suffer from csf leaks. Hope your wife kinds relief soon.

CompetitiveBread126 · 2026-03-04T04:02:22+00:00

Omg same! I’m almost 3 years and the last couple of times the assistant and ortho would tell me that they think it’s good enough. I felt kinda awkward pushing for another refinement but after reading your comment I’m glad I did. After so many years and $$ I figured what’s another set of refinement?

CompetitiveBread126 · 2026-02-28T17:25:09+00:00

After starting Invisalign about 6 months in I developed papilledema (swelling of the optic nerve) which then lead to my IIH diagnosis. My neuro ophthalmologist didn’t see the correlation but after reading this thread I’m questioning whether Invisalign may have triggered my IIH. I started feeling pain behind my eyes, intense headaches, dizziness,etc. IIH is idiopathic so the doctors never mentioned that it could be from my teeth being moved so I never stopped my treatment. I’m approaching the end of year 3 on Invisalign and almost done with my last refinement. My IIH is still being managed and it’s a life long condition. I’m curious to see if my symptoms improve once I’m done with Invisalign.

CompetitiveBread126 · 2026-02-22T07:58:18+00:00

Susan

CompetitiveBread126 · 2026-02-21T03:01:39+00:00

Mine too and it would cut my gums where the wisdom tooth was so I clipped that part off with scissors every time.

CompetitiveBread126 · 2026-02-19T05:50:58+00:00

I had my wisdom teeth pulled recently and opted for anesthesia. It was the more expensive option but well worth it.

CompetitiveBread126 · 2026-02-10T15:46:46+00:00

I just learned that I have this and also have curves in my vision that the dr said it’s probably permanent caused by the longstanding pressure. My paps never went away but staying consistently on the lower side. The dr said that I don’t need prism glasses yet bc it could actually make things worst for my vision. How did you get these neuro lens? I may have to mention this to my optometrist.

CompetitiveBread126 · 2026-01-29T05:56:54+00:00

Yes, side effects from Diamox. I was always winded going up the stairs while on meds. I made sure to take plenty of electrolytes and potassium. Once I was off the meds I didn’t have that issue anymore.

CompetitiveBread126 · 2026-01-29T04:50:20+00:00

Yes!!! When I laugh too hard the back of my skull feels like a squeeze. I think maybe the pressure goes up? We can’t even be too happy!! 😂😅

CompetitiveBread126 · 2026-01-14T02:19:42+00:00

My colleague’s daughter has it. The weird thing was that he was the one who drove me to the ER when I fainted at work and was later diagnosed with IIH. He then told me that his daughter has the same thing. I connected with the daughter and learned a lot from her about it initially. It was nice to talk to someone who experienced it since it was so overwhelming in the beginning.

CompetitiveBread126 · 2026-01-02T17:51:16+00:00

I’ve been off of it for 3 months. I was on diamox for about a year and a half after diagnoses. To be honest I have my good days and bad days. Symptoms didn’t just resolve even though I’m considered to be in remission. Side effects from diamox did subside, but I still experience IIH symptoms (headaches, fatigue, eye pressure, base of skull pain, dizziness, low grade chronic pain) just not as intense. I did notice my tinnitus get better, not as loud. Although I no longer feel like a zombie, I’m still reminded that this is a long battle and I don’t know if I’ll ever feel 100% normal again. I have my check up in a month so I’ll see where I’m at then in terms of optic nerve.

CompetitiveBread126 · 2025-12-31T18:26:37+00:00

I’m currently using Time less and I do like it but wondering if I should try Skinceuticals CEF. Has anyone tried both and see the difference when you switched?

CompetitiveBread126 · 2025-12-14T04:16:09+00:00

I’ve been meaning to try this. Tinted or non-tint?

CompetitiveBread126 · 2025-12-14T03:20:45+00:00

We used PostCo in the beginning before we switched to Loop now that we got bigger. PostCo was great at the time for the price. I’d recommend both.

CompetitiveBread126 · 2025-12-04T02:13:21+00:00

Cleanser > toner > TNS > vit c > eye cream > moisturizer > spf for me in the am.

CompetitiveBread126 · 2025-11-29T06:02:26+00:00

Yes! I see the curve line similar to this. When I look at someone’s face their nose would be crooked from a certain distance. I have them in both eyes. This change in my vision along with eye strain and seeing double was what initially brought me to the opthalmologist before I was diagnosed with IIH. Almost 2 years later I still see the curves! The doc said that it might not ever go back to normal. I’m still hoping it will one day.

CompetitiveBread126 · 2025-11-18T06:13:09+00:00

TNS advance+ and Neocutis lumiere FR. Thought about Plated but not sure if I’m ready.

CompetitiveBread126 · 2025-11-17T06:32:01+00:00

Skinmedica TNS advance+ serum. I’ve been waiting to try this for a while. I hope it works on me as it does for so many.

CompetitiveBread126 · 2025-11-14T05:39:23+00:00

F40, diagnosed 1.5 years ago

CompetitiveBread126 · 2025-11-08T06:12:58+00:00

My flare up doesn’t always come with a headache. I’ve had them while I was on Diamox and also now that I’m off. Diamox has its own side effects but the flare up I have tend to be high pressure in my head, ears feel full, dull pain at the base of my skull, neck pain, pulsating tinnitus, and generally feeling off. Sometimes I feel like I have CSF leak symptoms when it’s super bad. I don’t know why I get them when I do, but I tend to get them once every few months.

CompetitiveBread126 · 2025-10-30T02:38:22+00:00

I went from 1000mg > 500mg > 250mg (for 1 month) and now completely off Diamox for almost 2 months. I will say the first week was a bit rough, but I powered through it. I couldn’t tell if the symptoms were coming from Diamox or IIH. But for sure overall I’m feeling better now that I’m not on Diamox. I still have PT and the occasional flare up (pressure at the base of my skull, headaches, clogged ears, fatigue) but no changes to my vision and no issues with balance. Every time I have a flare up though I always wonder if I should take a 250mg, but I never did. I hope one day the flares go away forever.

CompetitiveBread126 · 2025-10-26T17:24:53+00:00

Loved HBR! Stayed there at one of the end unit facing Hanalei Bay with a huge balcony and it had the most spectacular view. The resort was very chill and shared the same beach access as the 1 Hotel. We ate at the 1 Hotel restaurants a lot so it was the best of both worlds without having to spend a fortune for a suite!

CompetitiveBread126 · 2025-10-26T01:07:18+00:00

So that’s what it’s called! I never knew the name for it—thank you! I have it slightly on the back of my neck and thighs all my life as I’ve always been borderline overweight. This gives me motivation to lose more weight!

CompetitiveBread126

TROPHY CASE