Fawkinchit

A lot of this information is actually really good, and certainly a potential hypothesis.

The microbial theory definitely merits further investigation, and could certainly be a possible cause for HPPD.

Yes! Definitely, maybe not likely, but I did have significant improvements after about 5 years. Some of the most improvement actually. 

On 12/11/2023 at 5:20 AM, Shadow said:

This is for the moderators @Jay1, @Fawkinchit and others who are researching for a cure online.

I would like to pick your brains on something, since you have more experience playing around with antiepileptics than tinnitus sufferers.

I got poisoned by fluoroquinolone antibiotics, which made me lose sleep, as well as give me physical issues.

To help with sleep, I was given Mirtazapine. BIG MISTAKE, it almost killed me in my compromised state, but I never realized it until it was too late. By the time I realzied it, I had full blown HPPD. It only got worse after I cold turkeyed it.

Initially, my main symptom was Tinnitus and Hyperacusis. WHile doing research online, I came across an antiepileptic called Retigabine, a KV7.2/3 modulator (potassium channel openers). People reported success with it in the past for their tinnitus, some even got cured. You can find more info on TinnitusTalk.

However, it gave some people VSS as well. It worked on multiple receptors, voltage channels, that's why it had many nasty side effects. It got removed from the market.

Now, they are reworking it to have less side effects and be more potent and more specific.

These two drugs are called XEN1101 and BHV-7000. BHV-7000 will hit KV7.2/3 stronger than Xen1101 and is more potent in hitting those two potassium channels and only those two. Whereas Xen1101 will have similar action to Retigabine but woN't have side as many side effects as Retigabine. It will hit Gaba, KV7.2/3 and to some extend 7.4 and 7.5.

The tinnitus community is waiting patiently for these drugs to come out....

Gabapentin also hits Kv7.2/3 and to some extend Gaba, I guess. Some people report in reduced visuals with it, also some people report, reduced tinnitus while on it.

Do you think, these two upcoming potassium channel openers could help with our visuals, based on your research?

Please look into them if you haven't already. Maybe they'll be able to help us?

 

Man sorry about your condition thats a really unfortunate series of events.

As far as the potassium channel openers, i really have no idea, since they are new to me.

However, in my opinion, its typically best to sit back and wait for other people to go first lol. When drugs are released after FDA approval it really just means now the public are testing grounds. A lot of medications have been approved and had deleterious effects. Its hard to say how anything will impact HPPD, since its a very strange condition to begin with.

I do appreciate you sharing your information and story though because its very unique, and gives further insight in to the cause of this condition.

Also, if I were you, I would open a lawsuit against the doctors treating you, if you haven't already. 

On 12/11/2023 at 1:42 AM, Jay1 said:

I'm tired of Siren's constant negativity and trying to bring others down to his misery levels. I wish him luck in his recovery, but have put him on a long time out from here. 

If anyone disagrees with this decision, please let me know... I really don't like banning people.

All fine by me, he was constantly going around harassing and abusing members. It was getting old.

I think it's Giome, but when i asked him he said it was another guy from the HRF or whatever its called.

I actually was going to help them with their website and the google ads funding, but I couldn't get it to work for the payment, and Giome never could give me the authorization emails for the supposed ads grant. He said he could access it from his account, but wouldn't let me log in to it. Then he went absolutely nuts texting me abusive speech etc. I just told him I wasn't going to help anymore and good luck.

makes me wonder as well if he just fabricated the google ads grant.

I think they are just bummed that the research project produced nothing, and went from 80,000 to 800,000 in monetary needs. So in their frustration they are going around abusing, harassing, and blaming everyone amidst their own angst. 

On 12/9/2023 at 11:59 AM, Siren001 said:

This thread is more about validating how brilliant you are.

 

And nothing else.

Honestly I wish that were the case, I wish I could have that luxury, of only caring to parade around. 

On 12/9/2023 at 7:20 AM, Siren001 said:

How is it progress?

just a bunch of desperate people rationalizing what the problem is without any scope of Turing a theory into reality. 

How is it not progress?

Do you have a better option?

On 12/7/2023 at 10:17 PM, AF44 said:

I thought I was weird, because when I eat a lot of sugar my HPPD flares up! Huh…

Yah I still notice this when I eat a large amount of candy. 

12 hours ago, Siren001 said:

This post first appeared in 2012.

you want to know how many of these theories have been researched tested and proven?

That would be none of them…

Yes, but its progress, a lot of progress actually, and its better than just going around trying to convince people that what they are doing to help is not helpful.

On 10/3/2023 at 7:43 AM, Siren001 said:

These are all great theories.

 

Too bad nobody here is capable of testing them.

I would actually be capable if I had the time and money for the equipment.

That's actually what I have been working on a lot in the last few years, which is why I haven't posted here as much. So far no success yet. But, there is still time. 

Just posting this study that shows that there are increases of glutamate in the prefrontal cortex from LSD. It states an increase or 206% from the second drugs tested but seems to bypass the percent increase from LSD.

I think i looked in to this once and the increase wasn't as substantial with LSD, no where near in range to suspect possible glutamate cascade toxicity. But I will look in to it again incase I can find anything else or incase I missed anything.

https://www.sciencedirect.com/science/article/abs/pii/S0006899304011813

Hi, sorry I am just getting back to this.

How do you know that the diffuse cerebral atrophy was from your early childhood?

You really would have to tell us also, have you used drugs before you developed the symptoms you are experiencing?

Usually the only things that are seen in an MRI for HPPD are microlesions, or micro hyperintensities. The things listed on your MRI are quite different for that. However, most HPPD sufferers have nothing on their MRI.

If you have used drugs, and you have HPPD like symptoms, it is likely that you have HPPD. Please also explain what your symptoms are. 

On 9/10/2023 at 11:49 PM, help123 said:

And if this is the answer,what treatment would be good?

I'm not quite sure yet, it will take some time to gather up possible reasons for dysfunction, and I'm not sure how much information will likely be available on the matter as well. 

Adding this also, as its a super interesting study on 5ht2a receptor dysfunction, and I think said dysfunction is something that necessitates further investigation. 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4362472/

Thought this was really interesting, seems like its saying that downregulation of 5ht2a receptors are long term...

Edit: Realizing that I think they mean while still on the antagonists. Although I do want to state that there may be unknown variables in the premise of downregulation/upregulation that may have not been fully explored yet. Maybe there are permanent changes that can possibly occur. 

Its extremely interesting as well, that, as I think I have brought up before, that schizo/OCD/and other conditions appear to be linked to 5ht2a receptor dysfunction, which alternatively I suppose may also be the case with HPPD. If I remember correctly there is consistency with HPPD and previous mental health conditions of the same lines. Even I personally have had mild OCD. 

It is strange as they state as well that the antagonist induce downregulation, instead of upregulation, which is quite paradoxical as they state. 

Functional regulation of 5-HT_2A

The functional regulation of 5-HT_2A involves desensitization and re-sensitization, which differentiates 5-HT_2A from conventional GCPRs (e.g. the B₂ adrenergic receptor) and prevents overstimulation.¹ At the molecular level, desensitization and re-sensitization of the receptor are controlled via clathrin-mediated receptor internalization and recycling.¹ This dynamin-dependent internalization can be triggered by antagonists or agonists of the receptor and exists to allow the recuperation of signaling competence.¹ Long-term use of 5-HT_2A antagonists has been shown to downregulate 5-HT_2A expression¹ and, while the mechanism of this "paradoxical regulation" is unknown, it is likely due to functional regulation.

https://www.reprocell.com/blog/biopta/5ht2a-serotonin-receptor#:~:text=5-HT2A receptor location,ligand binding experiments in rats.

On 8/31/2023 at 5:35 AM, Jjjj said:

I am dealing with a major flare up of symptoms I do not use anymore however I seem to have big flare ups when I get fevers I myself don’t understand this I haven’t used in years each time I seem to get out of this hell hole I go right back to square one. All of my symptoms are so strong visual snow, after images, colors are intense and have major dpr. It makes me very depressed and anxious thinking I have destroyed my brain forever. Also what manly scares me is the after images, this makes it very hard to do easy things like read or watch tv. I am in school right now and I haven’t been able to concentrate on anything because it has become so difficult to read. I feel like no one else really understands what I am going through except for people on this forum. 

Yah I understand. Its a really difficult condition, and definitely has better times, and worse times. It gets really difficult when the flare ups last, its the worst when they seem to last forever. How long have you had it for? 

Yah I can try and help, what's up?

@Jay1 is probably better to talk with than me though.

8 hours ago, Jay1 said:

Yea, it's shit that there is so little research... My hope is that it seems to be connected to anxiety somewhat, which is clearly a huge issue and well funded... A break through in anxiety might be a breakthrough for us too. 

Interestingly enough I was talking to a researcher one day that was explaining that anxiety is synonymous with neuronal inflammation. 

On 7/18/2023 at 2:45 AM, joegives said:

Hey man - I know it's a while since you've posted in this thread - but did you get any further with your thoughts on the etiology of it all?

Would you still recommend your niacin stack - or do you think there's potentially less chance of it working if neurons are lost? or do you think it might help to regrow axons (going from the interneuron loss theory)?

I've been taking the stack - it seems to help with my mood, it seems to have subdued some of the trippier elements of my visuals but not the more recalcitrant long lasting symptoms...it's only been a week though.

Anyway just wondering if you're still confident that based on your most recent reading if you think it's still likely a good treatment.

Oh - and love all your work mate. I'm sure I can say for everyone here that you're incredibly appreciated.

Joe

Hey Joe!

Haven't really made much more progress on anything lately, just have been working a lot and trying to find ways to maybe make some money to do research on the matter and test some of the ideas, or at least do some studies that show with evidence certain causes of the condition.

The niacin regimen I am not entirely sure of, one thing that I have been aware of and has certainly been proven true is that there are vitamin complexes in foods, and typically the singular vitamin extracted is scarcely as effective without the complex. Synthetically produced vitamin C for example in comparison to a comparable amount of camu camu is almost completely ineffective, as shown by studies, there are other examples as well, but too profuse to elaborate on for the time being. I think a natural sourced vitamin c complex would be better than niacin in its self, and maybe a natural b complex better also.

If the problem is neuronal loss however, I don't believe these will help much. Though a c complex would be better than nothing. 

And thank you I appreciate the support very much. 

Are there any official studies that have been done on it? All that I can find on there website is webinar.

All they really state as improvement as well are externally notable symptoms.

Not saying it doesn't work, but just that it doesn't have a lot of striking evidence. 

Should be fine, there have been rare occasions that it has exasperated peoples symptoms, but for the most part there is no issue. 

Yes, it should fine. 

If you don't want to take any medications and you tell them that why would you think they would think that you are drug seeking?

Pretty sure just HPPD in itself can drive a person to a state of insanity. Its simply just a very difficult condition to deal with, and to persevere.

In glutamate theory the neurons are theoretically lost, taking a glutamate antagonist or even reverse agonist would not remediate the loss of said neurons. It could however be a potential treatment for symptoms. 

Its not impossible for it to happen but will likely be less common than the person who gets HPPD as a habitual user, or someone who has used hallucinogens multiple times. 

Like Jay stated though, there really are not any studies done on the subject. 

Edit: If you mean in general though, HPPD in its self is extremely rare, so its to be assumed that HPPD after single use, would be even more rare, however still not impossible.