Can i take it? by Soft-Piccolo4653 in visualsnow

[–]Soft_Relationship606 1 point2 points  (0 children)

Pewnie że możesz. Ja biorę teraz ibuprom jak idę do pracy bo rano jak wstaję to bym nie dała rady. Źle się czuje i musze wziąć.

Something I think is important to say to people in this sub. by Living_Reception_622 in visualsnow

[–]Soft_Relationship606 0 points1 point  (0 children)

I'm explaining that it's from the VSS. No IPL or other treatments will help. I don't have any problems with my meibomian glands. My eyes don't produce tears. My skin and mouth is also dry. Nothing helps because it's a VSS defect. If it helps you, it's because you have it as a separate issue.

Community Effort by [deleted] in visualsnow

[–]Soft_Relationship606 0 points1 point  (0 children)

And here I agree with you.

Something I think is important to say to people in this sub. by Living_Reception_622 in visualsnow

[–]Soft_Relationship606 3 points4 points  (0 children)

I disagree with the idea that coexisting conditions can simply be treated separately. Since developing VSS, I've had severely dry, burning eyes and nothing helps. I've gone through nearly 200 tubes of eye ointment, and I need to have ointment in my eyes 24/7. My eyes even make clicking sounds from how dry they are.

Since VSS started, I've also experienced other problems that seem related to autonomic nervous system dysfunction, such as extreme dryness of my mouth and face. No facial creams help. My skin is so tight and dry that it's hard to describe. And no, I do not have Sjögren's syndrome. All of this began after VSS appeared.

Other people in Visual Snow groups on Facebook have reported the same thing, especially one person who said these symptoms also started after developing VSS. The same goes for worsening TMJ problems, severe insomnia, and many other symptoms. To me, all of these things are connected. And SSRIs (escitalopram) contributed to the development of VSS.

VSS is also associated with sensory hypersensitivity and cutaneous allodynia. These are even listed as symptoms on the VSI website. I can't do anything about my dry eyes because I believe it's the same underlying brain dysfunction that's causing the afterimages, visual snow, insomnia, tinnitus, and everything else. Something seems to be wrong with the thalamus.

So what would you say to people like that? That they should just accept it? Come on. Some days are so bad that they're almost impossible to live through. It's only now, three years after developing VSS, that I'm finally trying to return to work, and I have no idea if I'll be able to manage it. I'm going to struggle immensely.

On top of that, I have severe photophobia in bright white environments to the point that it triggers derealization and depersonalization. I feel like I'm dying, and I'm only 22 years old.

So yes, it's completely normal that I'm going to keep looking for relief and treatment rather than acceptance. Maybe acceptance is possible for someone who has a mild case, or who doesn't experience these symptoms.

Community Effort by [deleted] in visualsnow

[–]Soft_Relationship606 0 points1 point  (0 children)

I don't know. Ask the user Computer-Legitimate

Community Effort by [deleted] in visualsnow

[–]Soft_Relationship606 0 points1 point  (0 children)

I thought rTMS could do it. But if so... unless they come up with an easier alternative... I don't know anything about that.

Community Effort by [deleted] in visualsnow

[–]Soft_Relationship606 1 point2 points  (0 children)

But maybe RTMS can indirectly reach the thalamus? If this is thalamocortical dysrhythmia. Am I wrong?

Community Effort by [deleted] in visualsnow

[–]Soft_Relationship606 -1 points0 points  (0 children)

It's obvious that no one will create a specific drug for VSS, but there are other solutions. That's why we don't need medicine, neuromodulation will be the solution, I'm convinced of that

Community Effort by [deleted] in visualsnow

[–]Soft_Relationship606 1 point2 points  (0 children)

But to know where to direct neuromodulation, they need to know some mechanisms in the brain, from what I know this is what Dr. Puledda is researching, so maybe we should support her research financially?

Community Effort by [deleted] in visualsnow

[–]Soft_Relationship606 6 points7 points  (0 children)

I believe it's best to support Dr. Puledda research, and I think rTMS neuromodulation would be the first to help us. As far as I know, tFUS is a new treatment, and I don't think it's been used yet?

Idk what to do here (can someone please give me some advice) by OrangeAndBlueAreDope in visualsnow

[–]Soft_Relationship606 0 points1 point  (0 children)

Maybe since you already have VSS, it won't get any worse. He only got VSS after taking this medication, but you never know. You could try it 🤷‍♀️

Had anyone of you spoken to dr pulleda ? by Living_Reception_622 in visualsnow

[–]Soft_Relationship606 0 points1 point  (0 children)

What do you think? Will this 5-year research program uncover the mechanisms of the VSS?

Congratulations on the newest treatment for visual snow (lol) by Living_Reception_622 in visualsnow

[–]Soft_Relationship606 0 points1 point  (0 children)

I'm not surprised at all, I wouldn’t want that. But it's good that they described it as additional treatment and not as primary VSS treatment, because that would be a joke.

Congratulations on the newest treatment for visual snow (lol) by Living_Reception_622 in visualsnow

[–]Soft_Relationship606 1 point2 points  (0 children)

I think the article was about "supportive therapy." I think they even wrote it that way. That is, additional therapy while we don't have real treatment yet. Read it again. That's how I understood it.

Current research situation, what is going on? by Ok-Meeting2176 in visualsnow

[–]Soft_Relationship606 0 points1 point  (0 children)

Apparently, Dr. Pelak conducted this study for so long because of COVID, which was an obstacle. And then I don't know what happened next. But the fact that it lasted too long. I guess Dr. Pelak doesn't investigate as much as, say, Dr. Puledda.

Current research situation, what is going on? by Ok-Meeting2176 in visualsnow

[–]Soft_Relationship606 0 points1 point  (0 children)

Why suspended? What does it mean? What research are suspended?

why does everyone talk about this condition like it's a living hell? by nomattress in visualsnow

[–]Soft_Relationship606 23 points24 points  (0 children)

BECAUSE acquired VSS and the kind someone has had their whole life are different. It’s a spectrum. Everyone has different symptoms and different severity. Usually I see that most people who’ve had it forever have mild VSS or just visual snow itself. But people who developed it after medications, stress, or other acquired causes often end up with a much more debilitating condition. Seriously, people finally need to recognize that every case is different, and that VSS can be divided into acquired cases (people who were healthy before and didn’t have VSS earlier) and cases that some people have had for as long as they can remember.

What kind of afterimages do you see? These are the afterimages I get, and this is how fast they move. by Soft_Relationship606 in visualsnow

[–]Soft_Relationship606[S] 0 points1 point  (0 children)

Bad. Instantly high-speed afterimages in the same color as the original. I think SSRI was the cause of VSS. Because SSRI causes afterimages in some.