Supplements

[AF44]

Hey everyone Obviously I’m on this forum because I have HPPD…I’m sure y’all have seen several of my posts. I don’t know if I posted that my 16 year old son got HPPD last October. What a nightmare. We have finally talked to him about it and what it is and that I have it as well, which he knew because he’s heard me talking about it. (I don’t know why I was so naive thinking he didn’t know what it was!) I went the medication route but my husband and I, and our son agreed not to put him on any medication. As we all know, it can really bite you in the ass and I can attest to it personally. Apparently my son wants to try supplements. I was curious about different supplements y’all have tried and how they affected you. Any advice? Thanks!

[James3524]

2 hours ago, AF44 said:

Hey everyone Obviously I’m on this forum because I have HPPD…I’m sure y’all have seen several of my posts. I don’t know if I posted that my 16 year old son got HPPD last October. What a nightmare. We have finally talked to him about it and what it is and that I have it as well, which he knew because he’s heard me talking about it. (I don’t know why I was so naive thinking he didn’t know what it was!) I went the medication route but my husband and I, and our son agreed not to put him on any medication. As we all know, it can really bite you in the ass and I can attest to it personally. Apparently my son wants to try supplements. I was curious about different supplements y’all have tried and how they affected you. Any advice? Thanks!

Some people have had success with the supplement called n-acetyl-cysteine (NAC). It can help HPPD by lowering glutamate levels. 
 

 

[brake]

Browse through the forum, there are many supplements listed and spoken about. I recommend these two. They are safe. 

[AF44]

Thanks everyone!! Anyone familiar/tried 5-HTP? I think that’s what it’s called? I tried it an EXTREMELY long time ago and now I can’t remember if it helped me

[AF44]

11 hours ago, brake said:

Browse through the forum, there are many supplements listed and spoken about. I recommend these two. They are safe. 

Actually I think I’m going to go ahead and try the OLLY. Thanks so much for your input!!

[AF44]

14 hours ago, James3524 said:

Some people have had success with the supplement called n-acetyl-cysteine (NAC). It can help HPPD by lowering glutamate levels. 
 

 

Thank you!

[yarkadin]

I'm going to order this Olly Goodbye Stress supplement myself soon since it seems like it won't be a major loss to try.  There is an ultra-strength version as well but reading about them they give allergic reactions to certain people, so it's probably better to get the normal version first. 

It is over the counter and not evaluated by the FDA so by default I am assuming this is total placebo bullshit... though on the other hand about 80% of reviewers on Amazon vouch for it either working great or very good.  I am only interested in visual/symptom reductions, not "feeling good" or being "happy", I can be happy without pills, thank you.

[brake]

9 minutes ago, yarkadin said:

I'm going to order this Olly Goodbye Stress supplement myself soon since it seems like it won't be a major loss to try.  There is an ultra-strength version as well but reading about them they give allergic reactions to certain people, so it's probably better to get the normal version first. 

It is over the counter and not evaluated by the FDA so by default I am assuming this is total placebo bullshit... though on the other hand about 80% of reviewers on Amazon vouch for it either working great or very good.  I am only interested in visual/symptom reductions, not "feeling good" or being "happy", I can be happy without pills, thank you.

These supplements do not provide visual symptom reductions but they do decrease anxiety, make you calmer and make you think better. I have tried all of these many times without any issues.

[brake]

Chamomile, lemon balm and L-theanine are not just placebos.

[brake]

I have experienced visual symptom reductions with benzos and Lamictal only however the static visual snow stuff seems to be the hardest to beat.

Edited July 22 by brake

[yarkadin]

Brake, thanks for your answer. 

Have you tried the Lamictal alone?  I'm getting word that benzos have an impact on visuals when taken at 1 to 2 mg but not getting any info on Lamictal, or please forward me to some info that shows otherwise, if possible.  I've dug through some posts but it's hard to get any hard data.  I read at least one post from another person elsewhere here that Lamictal had no effect... another statement that Lamictal "cured HPPD completely"... getting wildly different information on this.

 

[brake]

5 hours ago, yarkadin said:

Brake, thanks for your answer. 

Have you tried the Lamictal alone?  I'm getting word that benzos have an impact on visuals when taken at 1 to 2 mg but not getting any info on Lamictal, or please forward me to some info that shows otherwise, if possible.  I've dug through some posts but it's hard to get any hard data.  I read at least one post from another person elsewhere here that Lamictal had no effect... another statement that Lamictal "cured HPPD completely"... getting wildly different information on this.

 

Yes so I tried Lamictal and it was improving my vision, reducing my anxiety and depression and improving my mood and well-being as well. I would have kept taking it but I started having some allergic reactions to it so I stopped. I had terrible side effects and the rash from Gabapentin and it's also a anticonvulsant so I was weary of Lamictal. However for some people they prescribe the lamictal and Klonopin combo. Might be very effective if you can tolerate it.

 

Apparently for some people in the clinical studies, lamictal or klonopin completely cured their HPPD or permanently reduced their symptoms. However I am not one of those people.

Edited July 23 by brake

[yarkadin]

I'm sorry to hear that Lamictal did not work for you.  I have the same fears of taking these anticonvulsants... I am not aware of any data that shows controls vs treatment group studies or just enough anecdotal evidence.  If someone reading this has access to such studies or can point to more data I would very much appreciate it.

 

Those who claim that lamictal or klonopin completely cured their HPPD... well, I'd like to talk to such people if they exist.  I am not closing my mind completely but in the absence of any evidence I am very skeptical of these claims.

Anyway, the topic is about supplements... n-acetyl-cysteine (NAC), the Goodbye Stress gummies mentioned earlier... let's talk more about these and share our experiences.  I will be getting those above in a week or two.

Edited July 23 by yarkadin

[brake]

21 minutes ago, yarkadin said:

I'm sorry to hear that Lamictal did not work for you.  I have the same fears of taking these anticonvulsants... I am not aware of any data that shows controls vs treatment group studies or just enough anecdotal evidence.  If someone reading this has access to such studies or can point to more data I would very much appreciate it.

 

Those who claim that lamictal or klonopin completely cured their HPPD... well, I'd like to talk to such people if they exist.  I am not closing my mind completely but in the absence of any evidence I am very skeptical of these claims.

Anyway, the topic is about supplements... n-acetyl-cysteine (NAC), the Goodbye Stress gummies mentioned earlier... let's talk more about these and share our experiences.  I will be getting those above in a week or two.

https://www.medicalnewstoday.com/articles/320181#management-and-treatment

I also read about some clinical study paper but maybe I will find it later and post it.

 

[yarkadin]

The 2012 study on Lamotrigine is just a case study involving one 33 year old woman.  There are no controls and little to no empirical data.  I read it over very carefully and the text contradicts itself... in one section they talk about possible full remission of something, "the patient experienced significant relief from her symptoms, some of which disappeared completely", in the other " after images, halos, and ‘glow worm’ effects occurred less frequently."  Is it less frequent or disappeared completely?  What disappeared completely?  There are also quotes in there about flashbacks that lead me to believe the author knows next to nothing about HPPD.

You know, I've been looking at studies like this for 25 years and I've grown to have little patience for many of them.  I'm grateful that some medical practitioners are devoting time to publishing these articles, they open the door to a tiny glimmer of hope for some people with an expanded set of treatment options, but studies like this are hardly useful overall.  Many people who are heavily dosed on psychotropic meds may simply no longer pay as much attention to their problems as they have before... it's much like the way SSRIs have been established to work, i.e. as emotion-deadening agents and not playing any causative role in the treatment of depression itself.  After reading this study and checking some of the anecdotal messages on this forum I don't have a high confidence in Lamotrigine.  I would be pleased to be proven wrong with more data.

[brake]

7 hours ago, yarkadin said:

The 2012 study on Lamotrigine is just a case study involving one 33 year old woman.  There are no controls and little to no empirical data.  I read it over very carefully and the text contradicts itself... in one section they talk about possible full remission of something, "the patient experienced significant relief from her symptoms, some of which disappeared completely", in the other " after images, halos, and ‘glow worm’ effects occurred less frequently."  Is it less frequent or disappeared completely?  What disappeared completely?  There are also quotes in there about flashbacks that lead me to believe the author knows next to nothing about HPPD.

You know, I've been looking at studies like this for 25 years and I've grown to have little patience for many of them.  I'm grateful that some medical practitioners are devoting time to publishing these articles, they open the door to a tiny glimmer of hope for some people with an expanded set of treatment options, but studies like this are hardly useful overall.  Many people who are heavily dosed on psychotropic meds may simply no longer pay as much attention to their problems as they have before... it's much like the way SSRIs have been established to work, i.e. as emotion-deadening agents and not playing any causative role in the treatment of depression itself.  After reading this study and checking some of the anecdotal messages on this forum I don't have a high confidence in Lamotrigine.  I would be pleased to be proven wrong with more data.

I actually read a few more examples of people being fully or partially cured by Lamictal, Xanax and or Klonopin but one of the articles was suspended or taken off. 

[yarkadin]

I received and took a few "Olly Goodbye Stress" gummies after work and completely forgot about doing so as I had so many things to do.  In retrospect, I didn't see any change whatsoever, in neither my vision nor my general state of mind.  I was focused on other things.  I felt I was a bit more tired than usual, but that could have been for a thousand other reasons.  If my vision would have changed it would have come to my conscious attention, so what you said, Brake, about this not affecting visuals was true for me at least. 

I will continue trying more of these out in the coming days and see what happens, even if there is a placebo affect, I'll take it.

[brake]

6 minutes ago, yarkadin said:

I received and took a few "Olly Goodbye Stress" gummies after work and completely forgot about doing so as I had so many things to do.  In retrospect, I didn't see any change whatsoever, in neither my vision nor my general state of mind.  I was focused on other things.  I felt I was a bit more tired than usual, but that could have been for a thousand other reasons.  If my vision would have changed it would have come to my conscious attention, so what you said, Brake, about this not affecting visuals was true for me at least. 

I will continue trying more of these out in the coming days and see what happens, even if there is a placebo affect, I'll take it.

I personally prefer the Good Day supplement over the Olly supplement but both are good in theory. Yeah the visual stuff is brutally stubborn unfortunately. But you never know, everyone's brain chemistry is a little different so maybe one of these supplements will help someone a lot more than others. They do make me feel better. I haven't tried Xiao Yao San yet along with Klonopin. I will report back to the forum though. I value supplements and medications that increase my perceived well-being and calmness and that make me feel better in my mind even if they don't decrease visuals much.

[yarkadin]

Good point on everyone's brain chemistry being different.  I opted for the Olly supplement because I have problems with milk and lactose and that's what was pictured on the Good Day image above... but maybe there is one that is not "milk chocolate"?  Not a big sacrifice to try these out.  Was also curious about the combo of Klonopin and one of these.  Is that even safe with the GABA supplement?  Might be an interesting experiment.

Edited August 1 by yarkadin

[brake]

9 minutes ago, yarkadin said:

Good point on everyone's brain chemistry being different.  I opted for the Olly supplement because I have problems with milk and lactose and that's what was pictured on the Good Day image above... but maybe there is one that is not "milk chocolate"?  Not a big sacrifice to try these out.  Was also curious about the combo of Klonopin and one of these.  Is that even safe with the GABA supplement?  Might be an interesting experiment.

It's safe for me. But also remember that Gabapentin was not safe for me but I'm in a tiny minority. Gabapentin comes with a huge warning label when you get it prescribed that it's fatal for like 0.01% of people or some tiny number close to that. I did develop the rash and had breathing problems after a few days along with some other side effects but I did not die! Haha. I found that Klonopin enhances these supplements for me but I didn't like Olly because I felt like it made me more aggressive whereas Good Day mellowed me out. Olly is good for sleep though. If you look in the supplements aisle in WholeFoods, you will find many different replacements and calming supplements. 

[brake]

On 7/19/2024 at 1:08 PM, AF44 said:

Thanks everyone!! Anyone familiar/tried 5-HTP? I think that’s what it’s called? I tried it an EXTREMELY long time ago and now I can’t remember if it helped me

Tried it. Helped slightly with the depression temporarily and with like serotonin levels but cure the visuals definitely not lol. I feel like a cure for the visual stuff would be worth millions lol.

[yarkadin]

I spoke too soon about those Olly supplements... my stomach was wrecked last night and I'm pretty sure it was from those gummies since I haven't had any stomach issues almost the entire year and didn't eat anything that I think would do this.  Reading reviews online this is a possible side-effect.  Could also be the case that they were poorly stored... the ice pack that it was shipped in was completely melted and the bottle soaked but didn't think that would make a difference.  Odd why an ice pack is even necessary for this stuff but there you go, people...

[brake]

On 7/24/2024 at 11:52 AM, yarkadin said:

The 2012 study on Lamotrigine is just a case study involving one 33 year old woman.  There are no controls and little to no empirical data.  I read it over very carefully and the text contradicts itself... in one section they talk about possible full remission of something, "the patient experienced significant relief from her symptoms, some of which disappeared completely", in the other " after images, halos, and ‘glow worm’ effects occurred less frequently."  Is it less frequent or disappeared completely?  What disappeared completely?  There are also quotes in there about flashbacks that lead me to believe the author knows next to nothing about HPPD.

You know, I've been looking at studies like this for 25 years and I've grown to have little patience for many of them.  I'm grateful that some medical practitioners are devoting time to publishing these articles, they open the door to a tiny glimmer of hope for some people with an expanded set of treatment options, but studies like this are hardly useful overall.  Many people who are heavily dosed on psychotropic meds may simply no longer pay as much attention to their problems as they have before... it's much like the way SSRIs have been established to work, i.e. as emotion-deadening agents and not playing any causative role in the treatment of depression itself.  After reading this study and checking some of the anecdotal messages on this forum I don't have a high confidence in Lamotrigine.  I would be pleased to be proven wrong with more data.

Ok so Wikipedia was updated and these are all of the treatments for HPPD that are listed in Wikipedia. Please refer to my link below:

 

I couldn't find the actual clinical studies that said Xanax, Klonopin and Lamictal permanently cured or decreased visuals for patients. I remember reading them though. 

However: "As of January 2022 there is no officially recognized cure or therapy for HPPD"

The suffering continues! Lol

Edited August 11 by brake

[yarkadin]

15 hours ago, brake said:

I couldn't find the actual clinical studies that said Xanax, Klonopin and Lamictal permanently cured or decreased visuals for patients. I remember reading them though. 

However: "As of January 2022 there is no officially recognized cure or therapy for HPPD"

The suffering continues! Lol

I hate to be the harbringer of bad news or to be pessimistic here, especially to those new to HPPD who might be reading this (please don't panic about anything I say!) but I don't believe a single story about any medication "permanently" curing HPPD.  Not one.  I would LOVE (PLEASE) to be proven wrong with hard evidence.  More often than not these are lazy writers who don't go back and investigate anything... or maybe they are just making stuff up out of air, pulling stories out of their ass, which I also tend to be believe.

There simply is a lot of very misleading data online on HPPD, a lot of it coming from so-called professionals and enthusiastic "neurotherapists" who think hallucinogens are some panacea to cure all mental problems because they themselves apparently enjoyed using them.  I'm not one to denigrate professionals, which seems to be very fashionable now in social media and in politics, I take professionals seriously - but I'm sorry, I've read A LOT of obvious bullshit online with no controls, no follow-ups, no understanding of "P values" nor the scientific method, etc.  Just garbage. 

I myself for all of the anecdotal uselessness of my own experience have talked to some people who claim that their HPPD is disappeared who admit that they still experience it when you grill them long enough. 

Edited August 12 by yarkadin

[brake]

I think we just want to appear so advanced and knowledgeable and they want people to have faith in our current science and system that it's like yeah we can handle this too. Look lamictal and benzos help it. "We have the technology" lol.