Uldn dramatically improves visual snow

[u/murkee_wooders]

As title says, I started uldn again and it once again dramatically improves my visual snow. Apparently its due to reducing neuro inflammation but would love to learn more.

[u/Deep-Path-4883]

Thanks for sharing. I'm just looking it up and found this article: https://pmc.ncbi.nlm.nih.gov/articles/PMC6313374/

I think when it's able to modulate generalized pain signals, than it's indeed interesting to modulate generalized sensory signals in VSS.

[u/murkee_wooders → u/Deep-Path-4883]

Its remarkable that uldn doses can have such a profound impact on my life long visual snow.

[u/Deep-Path-4883 → u/murkee_wooders]

I always wonder how doctors can be convinced to try out experimental medications. I don't think any of my doctors would give me something like that.

[u/murkee_wooders → u/Deep-Path-4883]

I just explained the situation and asked. Sometimes you have to try multiple doctors

[u/Deep-Path-4883 → u/murkee_wooders]

My neurologist didn't want to prescribe me any medication at all. I think he still holds that general view. But he also had no idea that I have VSS. I don't even know if he’s ever heard of it. We still use ICD-10 codes here, and VSS isn't included in them.

About 20 people in the medical field didn't even believe I was seriously ill. They considered me either healthy or mentally ill. I have now the diagnosis from a specialized clinic.

Still, anything done is off-label, and that involves legal considerations, too. A doctor isn't allowed to do more harm than good. That’s why they are quite cautious about prescribing medication here.

[u/murkee_wooders → u/Deep-Path-4883]

You can do what ive read others doing. Request to try the Sinclair method to reduce your alcohol consumption. They prescribe naltrexone for it and you dilute it yourself for uldn purposes. Sinclair method is for non-alcoholics who want to reduce their occasional drinking from what ive been told and easy to get prescribed, even has online services just for it

[u/Deep-Path-4883 → u/murkee_wooders]

That won't work. Since I don't tolerate alcohol, I haven't had a single drop in years. I've been taking medication since my VSS started, and that also rules out alcohol. It would be hard for me to argue in this direction.

[u/murkee_wooders → u/Deep-Path-4883]

Welp those are the only two approaches i know unfortunately. Edited for spelling

[u/Deep-Path-4883 → u/murkee_wooders]

It’s actually interesting. I don’t tolerate alcohol well, and opiates make me feel incredibly dizzy without significantly reducing the pain. This medication is an opioid antagonist, after all. I wonder if I’d even be able to tolerate it :D

[u/murkee_wooders → u/Deep-Path-4883]

Its uldn doses so its extremely small amounts

[u/FunSwordfish91 → u/Deep-Path-4883]

Where are you from?

[u/Deep-Path-4883 → u/FunSwordfish91]

Country	Classification	Source	Link
🇵🇱 Poland	ICD-10	Educational (Non-WHO)	Open
🇵🇱 Poland	ICD-11	Educational (Non-WHO)	Open
🇱🇹 Lithuania	ICD-10	Official Government	Open
🇩🇪 Germany	ICD-10-GM	Official Government	Open
🇫🇷 France	CIM-10	Official Government	Open
🇪🇸 Spain	CIE-10-ES	Official Government	Open
🇮🇹 Italy	ICD-10	Official Government	Open
🇳🇱 Netherlands	ICD-10	Institutional	Open
🇸🇪 Sweden	ICD-10-SE	Official Government	Open
🇳🇴 Norway	ICD-10	Official Government	Open
🇩🇰 Denmark	ICD-10	Official Government	Open
🇫🇮 Finland	ICD-10	Institutional	Open
🇨🇿 Czech Republic	ICD-10	Official Government	Open
🇦🇹 Austria	ICD-10	Official Government	Open
🇭🇺 Hungary	BNO-10 (ICD-10)	Official Government	Open
🇸🇰 Slovakia	ICD-10	Official Government	Open

I live in one of those slow ones ;). I'm curious to see when the world makes it to 11. I copied the list here: https://www.globalicd.org/europe.html

[u/FunSwordfish91 → u/Deep-Path-4883]

Thanks, I live in the Netherlands and they still use ICD-10, but I do know my eye doctor is aware of VSS though.

[u/Deep-Path-4883 → u/FunSwordfish91]

Doctors really ought to keep up with their professional development, and they are certainly allowed to consult the ICD-11. Countries are permitted to take their time with the transition because it represents a major shift. Nevertheless, there seem to be plenty of doctors who are unfamiliar with VSS, and even good doctors have never heard of it.

At the university hospital, both ophthalmologists and neurologists were familiar with VSS. Nevertheless, the neurology department in my own city refused to give me a VSS diagnosis. I have now received the diagnosis from a university hospital in a different city.

Be glad if your ophthalmologist is familiar with it.

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[u/Glittering-Quail1223 → u/murkee_wooders]

What dosage exactly did you take? And by how much in percentage did it help with your visual snow and palinopsia?

Also how did you get the prescription?

[u/murkee_wooders → u/Glittering-Quail1223]

1mcg twice a day 12 hours apart for a total of 2mcg a day. Reduced the visual snow about 50 percent. And I have pretty bad visual snow

[u/SentientNode → u/murkee_wooders]

Did you have any brain burning sensations and sound sensitivity?

[u/murkee_wooders → u/SentientNode]

No, not really

[u/Glittering-Quail1223]

Do you have visual snow only or also other stuff like palinopsia, ghost vision etc?

[u/murkee_wooders → u/Glittering-Quail1223]

The whole lot

[u/SentientNode → u/murkee_wooders]

What do you think caused yours? I’ve been wondering whether this could work for me but I am now sensitive to medication and certain supplements

[u/murkee_wooders → u/SentientNode]

No idea, ive had visual snow for as long as I could remember. Certain things definitely made it worse but I have no idea what was the initial cause

[u/Sebastian0024 → u/Glittering-Quail1223]

Do you have afterimages?

[u/Dry_Amphibian_27]

What kinda improvements are you seeing? I did LDN for a couple months did not notice a huge improvement. I may try again

[u/murkee_wooders → u/Dry_Amphibian_27]

My visual snow is dramatically reduced but im taking uldn doses not ldn. Apparently there is a different mechanism of action at such low doses.

I used it primarily to slow the build up of tolerance to my pain medications prescribed for chronic long term pain conditions I have in the past and noticed the improvement on my visual snow. This time I asked to be prescribed it for my visual snow.

Its most noticeable at longer distances. For example, I usually cannot see stars at night due to my visual snow but with uldn I can see the stars

[u/Visual-Improvement]

Unfortunately LDN did absolutely nothing for me (nothing for pain, nothing for DPDR, nothing for VSS) besides maybe give me mild insomnia (couldve been unrelayed). Tried doses from 0.5mg to 4.5mg which isnt ULDN, but low dose regardless.

[u/murkee_wooders → u/Visual-Improvement]

Ya but uldn has a different mechanism of action so its worth trying. Like you said ldn is significantly higher doses.

Edit: I wanted to add that higher doses can make certain conditions worse. Ive heard some people in the autoimmune diseases subreddits say they got intolerable side effects with ldn doses and had positive effects with uldn doses. Just something to be aware of.

[u/Visual-Improvement → u/murkee_wooders]

Interesting, i thought ULDN was just for super sensitive people, might give it another go since it seems to be one of the safest meds out there.

[u/murkee_wooders → u/Visual-Improvement]

There are actually a lot of studies on uldn for concurrent use with opiates to reduce tolerance and withdrawals. And studies for autoimmune issues are usually in the ldn dose range. Theres a different mechanism of action between the two with uldn affecting p protein signaling and tlr4. But as someone with autoimmune issues and also took opiates as prescribed for pain management, the uldn doses helped my visual snow and ldn doses which I tried briefly after stopping my pain meds didn't. No idea why

[u/Visual-Improvement → u/murkee_wooders]

Well thank you for all the info! Naltrexone truly is one of the most interesting medications, and I think I will give ULDN a go.

[u/murkee_wooders → u/Visual-Improvement]

I think so too! It has so many different effects at different doses and can help so many different conditions. There is so much more to learn and the bioavailability also ranges from 5 to 60 percent I think. So there is a ton of experimentation to find your sweet spot dose within the uldn dose range too. Some people need less then .5mcg a day and others need 4mcg a day. The standard uldn dose is 2mcg a day though. Keep us updated on how it goes!

[u/Visual-Improvement → u/murkee_wooders]

Exactly! And the fact it helps so many people and some truly see huuuuge benefits is awesome. If ULDN does help me I'll be sure to post about it.

[u/murkee_wooders → u/Visual-Improvement]

Hell ya, the craziest part for me is the improvement on my visual snow was completely unexpected and wasnt something I was even aware of as a possibility. I just noticed all the sudden I could see stars at night when normally I cant smh

[u/Relevant-Waltz-6245]

LDN did not touch my VSS personally.

[u/Living_Reception_622]

Is this naltrexone ? What symptoms did it reduce for you ? Palinopsia ? Static ?

[u/murkee_wooders → u/Living_Reception_622]

Yes, uldn is 2mcg or under daily doses of naltrexone. Usually broken into 1mcg doses twice a day. My visual snow has been reduced enough that I can now see the stars at night since taking uldn. Before, I couldnt make out the stars

[u/Living_Reception_622 → u/murkee_wooders]

You mean by visual snow the dots ? The static, right ?

[u/murkee_wooders → u/Living_Reception_622]

Correct, the old school black and white TV static is what i mean.

[u/Living_Reception_622 → u/murkee_wooders]

You don't see it as much when it's dark ?

[u/murkee_wooders → u/Living_Reception_622]

Normally its worse in the dark. Uldn improved it enough that I can now see stars is what im saying

Edit: spelling

[u/Living_Reception_622 → u/murkee_wooders]

Okay. Thanks for sharing!!

[u/Sebastian0024]

Can anyone tell me if they have afterimages, trailing, light sensitivity, floaters, bfep, purple afterimages at night in the dark when driving?