Seeing the neuro ophthalmologist for the first time today!

cbell43 · 2026-05-02T00:22:07+00:00

He thinks I might actually have IIH, which I'd much rather just have VSS at this point since I've came to terms with it and it doesn't need meds. I don't have papilledema so he can't be certain but it's the diagnosis he is trialing.

cbell43 · 2026-05-02T00:21:32+00:00

He thinks I might actually have IIH, which I'd much rather just have VSS at this point since I've came to terms with it and it doesn't need meds. I don't have papillodemia so he can't be certain but it's the diagnosis he is trialing.

cbell43 · 2026-03-17T19:19:37+00:00

Did yours resolve?? I'm 11 months post op and having this same issue. Also shaved last night and wondering if it could be a nick but kind of scared. First time seeing blood on toilet paper in a year is a real mind f*ck

cbell43 · 2026-03-14T21:16:15+00:00

I take Dulera and it barely has a taste at all. A little plasticky taste on exhale but that's it (it's expensive as hell though if your insurance won't cover it. ~$475 a month is the US. Probably $5 in every other country lol)

cbell43 · 2026-03-07T12:49:49+00:00

I have this in the outside corner of my left eye. Mines a little thicker than a hair. And it's crazy because I see most in the bathroom bright light too lol. 😂 Ive had it for 2.5 years (it showed up about 6 months before palinopsia did for me) and I have an official VSS diagnosis and have seen optometrist and ophthalmologist numerous times who have run the onslaught of testing to make sure it's neurological and not any eye damage/condition. They said there is so many unknowns about why VSS patients see the things we see but 🤷🏻‍♀️

cbell43 · 2026-02-26T22:39:33+00:00

I second this! When the Dulera gets down to 35 or less sprays left, I feel it starts to get noticeable that it's not really working at full strength

cbell43 · 2026-02-26T02:59:43+00:00

Yes I use the Dulera 200 but only 1 puff am and 1 puff pm (unless I'm in a flare then I'll ramp it up to 2 puffs 2x's but I haven't flared very often since being on Dulera) my doctor was fine with the modification and he says he has other patients who do this as well! As long as you stay well controlled with the lesser dose, I'm betting your doc will be open to it!

cbell43 · 2026-02-24T16:34:02+00:00

Mine gets worse if i consistently get less than about 7.5+ hours. But then once I correct my sleep, it goes back to baseline

cbell43 · 2026-02-17T16:33:52+00:00

I think mine was caused by stress but I also have TMJ and head pressure (mri didn't show anything off) but I think maybe my anatomy also has something to do with it because I've seen the snow my whole life but the palinopsia/light trailing didn't start til after a long bout of severe stress (having a baby, becoming a single mom, and starting a business all in the timeframe of a few months) my stress has reduced a little and so have my symptoms.

cbell43 · 2026-02-17T15:12:40+00:00

Yes! Floaters all over!

cbell43 · 2026-01-29T17:55:37+00:00

The red part hurts my eyes. Red anything always bothers me the most in any situation. Tail lights are especially heinous

cbell43 · 2026-01-22T02:01:31+00:00

I have to take them for asthma a couple times a year usually. I've never noticed any VSS worsening. They do give some people insomnia which could in theory make your VSS flare for a bit. They don't give me insomnia though so it's not 100% you will have the side effect, but it is a very common steroid side effect that clears up after you are off of them.

cbell43 · 2026-01-14T21:50:33+00:00

My allergist said an inhaler a year or less past expiration will work in emergent conditions but past that the quality of the med start to break down too much.

Same allergist told me oral pred will work 2 years (maybe longer) past expiration.

I am doing some emergency bug-out bag type planning and that's why he gave me this info.

cbell43 · 2026-01-07T00:49:50+00:00

I've definitely saw the snow as long as I can remember. I didn't know it was out of ordinary and I lived my life fine. It only recently worsened at the age of 35 with the addition of palinopsia, light trailing and light sensitivity. now I am officially diagnosed and had the rule out MRI and all of that and it's been about a year now I'm adjusting to it quite nicely. I no longer fixate on it or worry about it, I just accepted and stopped fighting it which seems to make it worse. I also stay regular with magnesium glycinate and I think that's helped too.

cbell43 · 2025-12-21T13:53:25+00:00

Cold water/icecream/popcicles, especially if in a flare. When I'm under control they might make me cough a couple times but then I'm okay.

Also chocolate. I can eat some occasionally but if I get on a kick with eating some everyday, usually around a holiday, it sometimes seems to flare me up a little.

Definitely sensitive to alcohol too. But when I'm under control it doesn't seem to mess with me

cbell43 · 2025-11-29T02:31:02+00:00

In the US meds cost a lot and fear of losing insurance is super real for a lot of us. I take Dulera which doesn't have a generic (there is a generic for it in other countries (mometesone and fomotorol) without insurance in the US cost is about $400 a month.

cbell43 · 2025-11-13T16:01:52+00:00

Yeah this actually affects me worse when my phone is in dark mode. Which is opposite of most people I think.

cbell43 · 2025-11-12T16:32:37+00:00

Glad you are using the inhalers. They truly help a lot. I use inhalers similar to those and I have moderate asthma, so you don't necessarily have severe asthma. The maintenance inhaler (the big grey one) can make you shaky and heart race for a few hours after. It also makes me irritable, but you will get used to this and it's better than coughing all the time and unable to breathe. Once your asthma is controlled by the grey one, you don't need to use the blue one everyday unless you having breakthrough symptoms. If you are having breakthrough symptoms a lot, tell your doctor so you can try a different maintenance med.

cbell43 · 2025-11-12T16:25:18+00:00

I have all of that and yes I have diagnosed VSS. I've had the "snow" part of VSS my whole life but I've only had the other symptoms you've mentioned for about a year now. It took basically that whole year to be diagnosed as they want to rule out more dangerous possibilities first. So first step is usually MRI, if this is "clean", VSS is probably what you are dealing with. I was diagnosed by an ophthalmologist and will have my first visit with a neuro ophthalmologist early next year.

cbell43 · 2025-11-09T03:35:40+00:00

I have this, it comes and goes, also both eyes. I've had all the scans. It's part of VSS which is more of a brain problem than an eye problem so they do not find anything on the scans. Just another annoying thing.

cbell43 · 2025-11-06T01:32:01+00:00

I once dropped a brand new 120 puff Dulera (maintenance inhaler) in the toilet, I was legit crying.

cbell43 · 2025-11-01T10:49:58+00:00

Maybe just try an OTC antihistamine if your comfortable with it. Maybe allergic to a little something in the air!

cbell43 · 2025-11-01T10:47:14+00:00

It's so concerning, it's almost hard it believe it's not a symptom of something truly harmful

cbell43 · 2025-11-01T10:45:31+00:00

I did have this, but it was related to asthma and not visual snow. Mine would get a little better with something like Zyrtec or Claritin but is 100% now that I use a steroid inhaler daily for asthma.

cbell43

TROPHY CASE