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    • By HDDeer
      Hey guys,
      My doctor prescribed me lamictal yesterday and as pretty much all of you know, it's one of the more highly regarded medication out there for this condition.
      My hppd is actually very bearable, the only time I struggle is when I'm alone in the house where the lsd trip happened, which leads me to a few questions.
      If I decide to take it, and my hppd gets better/worse/stays the same, if I stop taking it will I return to baseline? Has anyone else taken this med? 
    • By 801music
      So in the beginning  of hppd I had tremors just in my fingers but now it's kinda spread to my hands they shake pretty bad some nights , and also I get twitches in my head and scalp like in my lips and eyelids and forehead. Also been having muscle tension in my arms and chest. Is this just hppd and anxiety ?
    • By gabriel
      Hello friends, I researched the topics about medications, but found few things about valerian. On some sites it says to be useful for hppd, but here I do not find people saying conclusively that valerian is really useful. In my case, I think that if improving my anxiety / depression will already be a lot of help. I await your reports, tnks .
    • By LethargicAcid
      hey I decided I finally would upload a video about hppd  gonna upload on youtube
       
      WIN_20171117_060240.MP4
    • By Bursting Aura
       I have only done about 10 hours of research on this, which is not much. Ideally I would like a couple more weeks to wrap my head around something before I recommend it and I need time to see the long-term effects for me also. But I have a strong inclination to quickly get this information to the group, so perhaps this will help someone else suffering. Maybe this works, maybe it doesn't. I cannot recommend this as a cure, but I can only say this has helped me. However, I am not sure if it placebo. Anyways, I did an 18 hour fast and it helped with my HPPD.

                   I will keep the anecdote short, because anecdotes never matter. What really matters is science and peer-review. I did this short-fast because I saw someone on here mention in a success story of curing HPPD on a 3 day fast. Someone commenting suggesting that it has to do with "neurogenesis". I did research on neurogenesis and it happens throughout our lives, such as during exercise or sex, so it doesn’t seem very significant. But, I stumbled upon a term called "autophagy"
      ah-ta-fa-gee. Researching this process gave me motivation to try a 18 hour fast. My HPPD since then has gotten better. On a scale of 1-10 my symptoms have been at a 5 since Saturday, when they usually average about 7 or 8. I am theorizing my symptoms decreased because fasting induces autophagy.

                  Here is Autophagy from an article . "Short-term fasting induces profound neuronal autophagy"
      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3106288/ Autophagy is a key homeostatic mechanism whose physiological importance is reflected by its preservation throughout the eukaryotic phylogenetic tree, from yeast to mammals. In recent years, autophagy has been recognized as a crucial defense mechanism against malignancy, infection and neurodegenerative diseases

                          Here is another definition. "Autophagy: cellular and molecular mechanisms" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2990190/ Autophagy is a self-degradative process that is important for balancing sources of energy at critical times in development and in response to nutrient stress. Autophagy also plays a housekeeping role in removing misfolded or aggregated proteins, clearing damaged organelles, such as mitochondria, endoplasmic reticulum and peroxisomes, as well as eliminating intracellular pathogens. Thus, autophagy is generally thought of as a survival mechanism. Autophagy is strongly induced by starvation and is a key component of the adaptive response of cells and organisms to nutrient deprivation that promotes survival until nutrients become available again.

                     Stay with me here. But it pretty much takes out damaged cells from our brains and recycles them in the liver. This process is activated via fasting.
      "Neuronal autophagy: going the distance to the axon." https://www.ncbi.nlm.nih.gov/pubmed/18000396/ Furthermore, our study implicates dysfunction of axonal autophagy as a potential mechanism underlying axonopathy, which is linked to neurodegeneration associated with numerous human neurological disorders
      Let me know what you think, I am always prepared to be entirely wrong. There is no research on a link between autophagy and HPPD obviously. So I am assuming a causal relationship that bad neurons are the cause of HPPD.

                   Here are more articles. I am hoping someone can partner and help me with this.
      "Disruption of Neuronal Autophagy by Infected Microglia Results in Neurodegeneration" http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0002906
      "Constitutive autophagy: vital role in clearance of unfavorable proteins in neurons." https://www.ncbi.nlm.nih.gov/pubmed/17332773/
      I found 2 posts of anecdotal claims.
      2013 bluelight.com post about fasting curing hppd. http://www.bluelight.org/vb/archive/index.php/t-688613.html
      2017 Reddit.com hppd forum success story about fasting curing hppd https://www.reddit.com/r/HPPD/comments/6ybbcs/success_story/
                          You can do an easy 18-hour fast by not eating after dinner at 5pm, and then not eating until noon the next day. Make sure you are healthy and talk to your doctor. I would like a couple people to try this to see if this actually works. I am going to start another fast today and I will report back in a week or so. Hopefully it works.
                      Potential adverse effects for women. there are claims that fasting can cause missed periods.  Also, unfortunately it seems autophagy is less profound with females. https://www.ncbi.nlm.nih.gov/pubmed/19036730/ In other words, the damaged neurons have a harder time dying off. For men, fasting will temporary lower testosterone. Do your own research and talk to your doctor.
Puppeteer

Keen to create a no-nonsense down-to-earth HPPD info pamphlet and website

13 posts in this topic

I think we can all agree that general awareness of HPPD is sorely lacking. Indeed, the majority of us here had no or little idea of what it was until we developed it. Odd that everyone hears so much about flashbacks, yet absolute nothing of HPPD, when I'm sure everyone here would gratefully trade this perpetual debilitating disorder for occasional, transient "mini-trips". Indeed, I know of a heck of a lot of people dealing with HPPD yet none who experience "flashbacks" in the traditional sense.

 

The thought of this lack of awareness causing more and more young, naive people to develop this disorder and suffer as much as all of us have is deeply distressing. Not to mention the amount of people out there who undoubtedly have symptoms without being aware of exactly what's going on who will likely use more psychedelics until their condition is more severe. I can't help but feel compelled to do my best to get the knowledge out there to those who are likely to benefit from just being aware of it, as I wish I had been.

 

Hence, I think it'd be great to compose a concise, non-alienating, realistic information pamphlet along with a website where the information is far more easily and readily available than browsing a pretty imperfect forum for tidbits of anecdotal data, or piecing together the knowledge from the various erowid/wiki/webMD/neurosoup and so on articles which all omit very important aspects of the nature of the disorder. I'm not entirely sure of the processes involved but I'm sure through contacting philanthropic mental-health/drug recovery organisations and the like it'd be possible to get HPPD more into the public eye. I'm imagining government or privately sponsored grants to print the brochures wouldn't be extremely difficult to procure either with the right approach. These, along with perhaps posters and such, could then be distributed at nightclubs, raves, head shops, etc. Of course a lot of people will ignore them, but they'll be far from entirely unnoticed.

 

I'm sure all of you agree that this is a necessary, noble pursuit, and I've decided I'll dedicate my moments of clarity to endeavouring to make this a reality. Insights, advice, and help would all be greatly appreciated!

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This is a great idea and would be something the whole forum could contribute to, if they wished.

 

I agree something like this is needed, in particular for newcomers who may not know that they even have HPPD. I think I can speak for everyone here when I say that the lack of information on HPPD at first onset is extremely daunting and disheartening, it caused me some pretty serious anxiety anyway knowing that I was stuck with something that not even medical professionals could really help with.

 

Good luck and I'd be glad to offer any assistance if needed. I've worked in ICT for a number of years and I'm quite competent at graphics design and web development which could prove useful.

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Surprisingly (or not, I guess), hallucinogenpersistingperceptiondisorder.com was not registered. I reg'd it for us to use (before a domain shark sits on it).

If anyone wants to write an introduction or mission statement I can have that up in a jiff.

- S

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Oh also, I would like to make a top notch video to raise awareness (with visual simulations, interviews, and user experiences). I have professional contacts who can help do this for free. I have some ideas about it but it hasn't exactly been on my priority list.

Also, I thought we could use this for a kickstarter project to raise funds for research.

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Oh also, I would like to make a top notch video to raise awareness (with visual simulations, interviews, and user experiences). I have professional contacts who can help do this for free. I have some ideas about it but it hasn't exactly been on my priority list.

Also, I thought we could use this for a kickstarter project to raise funds for research.

 

I was just thinking the same thing yesterday about a video with interviews from sufferers and the like. A video is much more digestible than textual information I find.

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I was just thinking the same thing yesterday about a video with interviews from sufferers and the like. A video is much more digestible than textual information I find.

Absolutely. To reach out to more people in the age where media has exploded, we need to make things more attractive to the classic internet hopper. You're based in the states aren't you? I'm in London... we could work on a website together quite easily. As for the video.. well, I could write a production plan or something. And people could contribute different things from different places depending on what they have available to them. Yeah, I'll try and write something at least brief by tonight.

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Indeed, I know that I'd much prefer to watch a video with interviews and visual simulations than to read a wall of text. Not only does this make it easier for people to empathise with the real people and actually see the suffering as a much more personal means of delivering information, it is likely to attract much more attention too. 

 

I'm based in the UK mate, specifically Derbyshire. So that makes it even easier.

 

The production plan sounds like a good idea. What I think would be nice would be to interview people from the forums for the video. Whether that be over Skype, them sending in a video outlining their experience with HPPD, or whatever else you can think of! In any case, it would be a nice, communal thing to have us all contribute to, and raising awareness is something that definitely needs to be done. 

 

Cheers

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Indeed, I know that I'd much prefer to watch a video with interviews and visual simulations than to read a wall of text. Not only does this make it easier for people to empathise with the real people and actually see the suffering as a much more personal means of delivering information, it is likely to attract much more attention too. 

 

I'm based in the UK mate, specifically Derbyshire. So that makes it even easier.

 

The production plan sounds like a good idea. What I think would be nice would be to interview people from the forums for the video. Whether that be over Skype, them sending in a video outlining their experience with HPPD, or whatever else you can think of! In any case, it would be a nice, communal thing to have us all contribute to, and raising awareness is something that definitely needs to be done. 

 

Cheers

Oh that's brilliant! I agree with you, interviewing people on the forums. Though, I think we should do it with proper cameras, not over Skype. Logistically that's okay interviewing here, but would be good to get some people who can provide some decent footage on a relatively good quality video cam from all over the place.

I've put the word out to some contacts about getting involved. If I can find someone interested in the producing the project (to make sure it's really slick), we can get the ball rolling.

 

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Wow, I'm so pleased this thread's taken off like this! Sorry for not returning sooner; I made the initial post in one of my more cheerful moods before realism/pessimism/anxiety swooped in and made positivity and productivity seem once again like foreign concepts, as tends to happen.

 

I'm glad of your knowledge and experience, Syntheso! You'll be a real asset to this project. Jay is a self-employed web-designer if my memory serves me? It'd be great if he were interested as well.

 

The idea of an engaging, well-made video is brilliant, and yes, absolutely crucial in the post-Internet era. I have relatively easy access to a high quality camera and would of course be more than willing to share my experiences. I'm also pretty decent with visual composition and effective writing when I put my mind to it!

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Wow, I'm so pleased this thread's taken off like this! Sorry for not returning sooner; I made the initial post in one of my more cheerful moods before realism/pessimism/anxiety swooped in and made positivity and productivity seem once again like foreign concepts, as tends to happen.

 

I'm glad of your knowledge and experience, Syntheso! You'll be a real asset to this project. Jay is a self-employed web-designer if my memory serves me? It'd be great if he were interested as well.

 

The idea of an engaging, well-made video is brilliant, and yes, absolutely crucial in the post-Internet era. I have relatively easy access to a high quality camera and would of course be more than willing to share my experiences. I'm also pretty decent with visual composition and effective writing when I put my mind to it!

Great! Where are you based mate? Sounds like we'd work well together. Who else wants to get involved?

Sorry I haven't got a draft plan out, I'll do it tomorrow as I have a gig tonight.

 

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Hey, I'm in Sydney, Australia, so that might impair communication somewhat. I've decided to take a break from checking the forum out for a month or so while I titrate up to a therapeutic Lamictal dose, but if you want to contact me in regards to this stuff I'd be happy to contribute whatever I can during that period. My email address is lachlanlordmartin {at} gmail {dot} com.

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I just found out about HPPD and this forum, and the first thing that came into my mind was the lack of info/education regarding this disorder. (You can read my intro post over here)

The widespread use of hallucinogens and the psy culture is relatively new where I live. Until mid 2000s we only had a few underground parties with few people, but it has been growing rapidly since. And the senseless use of drugs have been frightening me a lot in the recent years.

I think providing some pamphlets or other educational materials at psy trance festivals and such would be beneficial. Although producing websites and videos would be great, I think it is more important to reach people personally at an obviously non-antidrugs context.

I haven't been to any festivals abroad, but I know that there are some organizations like DanceSafe.org working to provide some education. We have no such thing around here, and I'll be glad to handout pamphlets and such at the festivals I attend.

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