Bit of an idea for possible CURE. Has some weight to it.

[mgrade]

Edited May 23, 2018 by mgrade

[Fawkinchit]

"In a survey of sixty five users of LSD, Holsten found fifty users who described post LSD disturbances eighteen months to four years later³."

HPPD is wayyy more prevalent than people are estimating among LSD users.

http://www.bjmp.org/content/25-years-hallucinogen-persisting-perception-disorder-diagnostic-challenge

Its incredible to me that these findings arent more widely published. Hallucinogens are clearly neurotoxic.

 

1. Holsten, F. (1976) Flashbacks: Clinical and social significance 1 ½-4 years after the first admission , Journal of Norwegian Medical Association; 96: 875-878

Edited May 30, 2018 by dasitmane

[mgrade]

....hi...

Edited December 12, 2020 by mgrade
privacy, mistake for posting

[Fawkinchit]

Mgrade did you read all the info on my new thread, the continuation of this one?

[mgrade]

.....hi again....

Edited December 12, 2020 by mgrade
privacy, mistake for posting

[brake]

On 10/9/2012 at 2:41 AM, mgrade said:

[cs1234 said: Try Cyclobenzaprine. This is starting to look like an interesting drug.]

Trying this tomorrow for the first time. Currently having intense neck and back pain for no reason.

[brake]

On 6/14/2023 at 7:52 PM, brake said:

Trying this tomorrow for the first time. Currently having intense neck and back pain for no reason.

I took Cyclobenzaprine for 6 days and although it helps with neck and back pain and it does improve sleep, it did not decrease visuals, anxiety or depression for me.

[AF44]

On 10/9/2012 at 10:31 AM, ludwig80 said:

The post about glucose hits home!! Ever since this started I always feel weird after eating sugars or carbs. More Dp/dr, more hppd, lack of ability to think and zero motivation.

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

[Siren001]

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…

[Fawkinchit]

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.

[Fawkinchit]

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. 

[Siren001]

6 hours ago, Fawkinchit said:

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.

How is it progress?

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

[AF44]

8 hours ago, Fawkinchit said:

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

Yeah I’m definitely a sugar-holic, I need to be eating less junk!

[Siren001]

11 hours ago, Fawkinchit said:

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

This thread is more about validating how brilliant you are.

 

And nothing else.

[Fawkinchit]

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?

[Fawkinchit]

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. 

[Jay1]

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.

[Shadow]

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?

 

[Beefol]

8 hours ago, 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?

 

Please read my posts! I had/ have major problems with hyperacusis and tinnitus after taking mushrooms one year ago. Would like to hear your story with it!

[Fawkinchit]

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. 

[Fawkinchit]

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. 

[AF44]

On 8/18/2012 at 1:35 PM, cs1234 said:

has anyone ever heard of cyclobenzaprine or cyproheptadine?

cyproheptadine is an anthistamine and on the wikipedia page for it, it says:

"Cyproheptadine is known to be an antagonist (or inverse agonist depending on the site in question) of the following receptors, listed in order of potencyfrom greatest to least (K_i

• H₁ (~0.05 nM)^[20] > 5-HT_2A (~2 nM)^[21] ≈ 5-HT_2B (~1.5 nM)^[22] ≈ 5-HT_2C (~2 nM)^[22] > mACh (M₁-M₅; ~7-12 nM)^[23] ≈ D₃ (~8 nM)^[24]"

 

so it's a 5-HT2a antagonist (or inverse agonist, whatever you wanna call it). i wonder if it'll greatly reduce symptoms or something. I also mentioned cyclobenzaprine because apparently it has a very similar structure to cycloheptadine (i also got that from wikipedia)

so has anybody tried these? it might be worth a shot

My doctor handed out cyclobenzaprine like candy for a shoulder issue. Since I’m on like 5 different medications (including Klonopin for the HPPD) I’m not sure if it helped although it seems like my visuals went down when I took it. (Yes, I still have HPPD symptoms despite the Klonopin-been on it for about 12 years) but the cyclobenzaprine wrecked my ass so hard I had to stop taking it. I felt like a floppy rag doll 24/7 (and that’s even when I went for periods without taking it!) started garbling my words, and ended up in the ER thinking I’d had a mini stroke because I was slurring and could barely move. I was falling down so often I was made to see a neurologist to make sure I didn’t have MS or anything like that. I finally put 2 and 2 together and chucked that shit and went back to normal. But like I said, maybe it did that to me since I’m on a lot of different psych meds, maybe try it and see if it works. It’s worth a shot!