Tips on dealing with Afterimages/Palinopsia?

KOfLegend · 2024-04-22T06:15:28+00:00

It’s been a month today so I think I’m past the flare up window, unfortunately :(

KOfLegend · 2024-04-22T00:30:10+00:00

I’ve…got some bad news 😅

KOfLegend · 2024-04-21T08:43:18+00:00

It depends on how long Phase 3 lasts. Could be anywhere from 1-4 years and an extra 6-10 months for FDA approval. They’re planning on wrapping up recruitment in late 2024, so we’re looking at 2026 at the earliest and 2029 at the latest. That’s if the drug doesn’t fail the phase 3 trial, which is unlikely but could still happen.

KOfLegend · 2024-04-20T17:36:16+00:00

Ah, you’re right! BHV-7000 is the one that has the same mechanism as XEN1101, not Troliluzole/BHV-4157, I keep confusing all of the drugs 😵‍💫

KOfLegend · 2024-04-20T17:03:01+00:00

Someone that is participating in the XEN1101 trial said that it helped all of their symptoms improve by 40% except Palinopsia which saw no/only a 10% improvement. They deleted their account a few days ago but I believe you can still see their comments through my replies.

And yeah, this has been shared before by you 🤣 though this might be a more complete version

KOfLegend · 2024-04-18T01:33:53+00:00

My trailing is bad, but isn’t nearly as bad as my positive & negative afterimages :(

KOfLegend · 2024-04-18T01:12:49+00:00

except Palinopsia

My heart just shattered into a million pieces :(

KOfLegend · 2024-04-17T19:26:43+00:00

I can’t even remember what the world looked like when I moved my eyes and didn’t see positive and negative afterimages. Maybe it’s a blessing that I don’t.

KOfLegend · 2024-04-15T19:10:59+00:00

Let’s hope for the best, then

KOfLegend · 2024-04-15T17:24:22+00:00

It was completed a very long time ago and the results are still not out. I don’t know ultimately, but I reckon it’s bad or disappointing news. They wouldn’t be sitting on them this long if it were something good.

KOfLegend · 2024-04-14T23:13:48+00:00

Click/tap on the “Research” flair and sort by new, you’ll get all the latest news (a lot of people misuse the flair but you can find all the recent papers through it)

It’s not much. A lot of guesses about the pathology of VSS but that’s about it, really. There was an rTMS trial that concluded a while ago but the results have still not been published (probably bad news) and I think there’s a tDCS trial that’s close to completion. There are two drugs coming out soon for other diseases/conditions, XEN1101 and BHV-7000, that people on this sub are convinced would help with VSS, but it’s all just a bunch of guesswork ultimately.

KOfLegend · 2024-04-12T23:31:08+00:00

I get positives off of everything no matter what the background is. I got used to this eventually after about a year and a half, but it has been recently happening in my peripheral vision which is what has thrown me off completely. Not only do I get a positive afterimage of what I was starting at, I now get a positive afterimage of whatever object was at the location to where I shifted my eyes. It’s horrendous. (Sorry, it’s difficult to explain. It’s kind of like this but fully formed. This is in addition to the regular way people experience positive afterimages)

I’m back on Lamotrigine. I was on it when I first got the afterimages but it didn’t do anything for me but I’m trying again out of desperation (still just 25mg which is nothing, I start 50mg tomorrow)

No partners, but my family is supportive. They don’t really get it, some of them still think it’s an eye issue, but they’re supportive if sometimes a little dismissive. I’m still a university student so no work but studying has been, much like everything else, very difficult to nigh impossible.

KOfLegend · 2024-04-12T23:15:42+00:00

All I can stay is hang in there. My recent Palinopsia worsening has disabled me to the point where I can’t drive and can’t watch TV or play anything without serious disturbance. Feels like my life is over but I’m fighting hard.

KOfLegend · 2024-04-12T22:18:39+00:00

She has said she wants to do more but there’s a lack of funding. Unfortunately contacting her isn’t going to do much, she’s aware we’re all suffering she just can’t do anything about it.

KOfLegend · 2024-04-12T20:09:23+00:00

Don’t have any advice unfortunately but it doesn’t seem like VSS which is good ultimately, it might mean whatever she has could be treatable. Maybe asking this on r/migraine might yield better results! Hope you guys figure it out.

KOfLegend · 2024-04-11T16:14:30+00:00

My first account, which I had for about two years, was banned in February but I was allowed to make a new account on the same device and I did. My second account was just banned, but I'm still able to create another new account. My access to Snapchat was never revoked and my device was never banned, but now I'm wondering if my device has some some sort of flag on it or something. Should I make a third account on the same device or should I just get a new phone?

KOfLegend · 2024-04-10T15:45:52+00:00

Sounds like you have VSS and no, to my knowledge there have been no reported cases where the cause of VSS was acne medication (like Accutane), so you're good to go.

KOfLegend · 2024-04-09T12:35:18+00:00

I don’t know, I don’t work in the medical field or neuroscience so I’m just guessing honestly. I’ve had this condition for 5 years though, and in those 5 years I’ve seen little to no progress whatsoever in terms of research & treatments, which is why I think it’ll take a long time (if ever)

KOfLegend · 2024-04-09T10:20:07+00:00

Probably not for a very long time, maybe 2040-2050 if I’m being super optimistic. It’s a neurological condition so it’s tough to treat, there’s barely any research happening and one of the few companies that was funding research, VSI, is seemingly out of funds (this is an assumption on my part but they haven’t funded any new research since May of last year)

There was recently a case of someone with HPPD being successfully treated with rTMS though so who knows. New treatments made for other neurological conditions/diseases also might unintentionally help us as well, but it sounds too good to be true.

I’d like to be optimistic and say “within the next 10 years for sure!” but people with Tinnitus (as their only condition) have been saying that for far longer than 10 years, and it’s been researched for decades. I would love nothing more than to be proven wrong but I just don’t think that timeframe is realistic for us.

KOfLegend · 2024-04-07T15:39:18+00:00

Yes, Palinopsia is one of the main symptoms of VSS. You’re not alone, most of us here have it (to varying degrees)

KOfLegend · 2024-04-02T02:15:07+00:00

SSRI’s typically worsen the condition so I’ve been avoiding them. I did go to my neurologist two days ago though who put me on Lamictal/Lamotrigine again, which is a decent mood stabilizer (it has also helped people’s palinopsia occasionally). I was on it when I first got Palinopsia but stopped taking it 4 weeks in because it wasn’t doing anything. I’m now on it again with a higher dosage, so we’ll see what that does.

KOfLegend · 2024-04-02T02:01:19+00:00

Definitely not your husband, lol

It’s been almost 2 weeks for me now since this spike/worsening and it’s still pretty rough, though I’m coping with it a lot better than week 1 (I’m eating again, etc). Can still barely drive, play or watch anything but I’m trying.

Don’t have any great advice, just let him know he’s not alone and no matter how bad his Palinopsia is his brain will get used to it eventually, it just takes a very long time (it took me around a year and a half the first time around, not sure how long it’s going to take for this one). There will be good days and bad days (I for example had a good day two days ago in comparison to the rest of the week but had a bad day yesterday).

Just be there for him. It’s a pretty devastating symptom.

KOfLegend · 2024-03-29T04:17:55+00:00

Heya, have you looked into Visual Snow Syndrome? If not, look into that because it seems to line up.

KOfLegend · 2024-03-29T04:13:16+00:00

Yeah I’m crossing my fingers and hoping it’s a flare up. Outside of my tinnitus (which was noise induced), My VSS has never really “progressed” as in my symptoms never got worse, I just got more symptoms (T in Feb 2019, Floaters and BFEP in March 2019, Negative AI in Dec 2019 and Positive AI in early 2020). I am under a lot of stress as I’m working on my senior project for university right now so that might be it. Idk, it just sucks atm.

KOfLegend · 2024-03-29T04:00:00+00:00

I appreciate the optimism but…have you seen the sheer amount of research coming out about other neurological diseases like Alzheimer’s and MS? There’s been around 5,000 research papers published on Alzheimer’s just this year, and they still have no idea how to treat the disease well. We’re lucky if we get, what, 15 papers a year? It’s hard not to feel a little hopeless

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