onelovez

No need to be sorry I totally understand you.

Is there anybody who had success with SSRI in a way it didn't affect his visuals? Or if it did then only temprarily?

<3 ... (the honest summary) yeah the fresh air especially, unless you are scotish ;p

I don't know if there is much more studies with qEEG and HPPD online, I will have a look. Then all we can do is make a post about if people have their diagnoses and are able to send them up. Could any establishded forum member do that? Jay?

It would be great if Visual can make it. At this stage, are we supposed to know what research/study do we want to do? Would it be drug trials or any specific medical tests or both etc. All that can be figured out later, right? The only idea that comes to my mind for start is to show our initiative and prepare some materials for them. We could also point out the most meaningful parts. http://www.evernote.com/l/AbRsTAeTpEdAK4WUDtw86U-VLIzve9l_4Ks/ This is what we are trying to get in the HPPD project, all good info in one place for everybody to study. Let me know if you think we should keep going. By the way.. there is not too many of us yet in the project, so every help is appreciated. I have created a google doc if anybody would like to add anything. https://docs.google.com/document/d/1Bm2r9SrtF62EvDK7qYnNXC4v4-2SZnlhWnmVL1693BE/edit This kind of "library" could serve us later.

I bought CBD with the lowest amount of THC I could find (can't remember now). I tried it and it decreases my visual/cognitive reaction time and increased the static. I don't know if its the effect of cbd or thc or both... my hppd is so bad that I can't smell cigarettes for few seconds around me, because it gets triggered and for example l-theanine makes my head blank and anxious instead of giving calming effect like 2 years ago (while I have hppd for last 7 years).. at this stage it feels like even a cure will trigger my hppd ;p

I did similar - mix alco and xanaxes sometimes (as I would not enjoy alcohol on its own, it makes me spaced out). Its deadly to hppd. First it was great but I think it was worsening my HPPD big time. Later a xanax would trigger my hppd/anxiety on its own and I had to drop more on top of the first one to ease the hppd and enjoy the calming effect. But I only took valium/xanaxes like 25-40 times, with fast build up of tolerance though.. I have a bad feeling xanaxes worsen HPPD. And your story sounds familiar to me. Few years ago when I drank I really wanted to end it with some weed and relax completely - I think it was HPPD kicking in as soon as I aws sobering up and had an urge to calm/relax myself somehow. You need to learn somehow just to enjoy drink or stay sober more... You might do yourself some harm like I did... now id give back all the money in the world, to not be where I am now. All I had to do is to learn to stay sober / not smoke weed / take drugs after drink (and not end all that then with with some psychodelics of course). Good luck!

I am really wondering about meds and how they work. I hear various things from doctors like some meds shouldn't do any damage and then people ending up with long-term problems and so on, so its hard to believe them when saying meds can help/cure and not just sooth the symptoms and at the same time make a person addicted for good.. but nevermind doctors for this moment. My question is how do meds really work. I have seen people online saying they can't go off some meds, then I see people being cured by taking them for some shorter or longer period of time. For example, a person having DP, due to overload of endegenous opioid, starts to take Naltrexone (opiod antagonist), it helps - the DP is reduced - does she have to take it for the rest of her life? Can she be possibly cured? If not, let say the side effects become severe and she wants to quit taking Naltrexone - since Naltrexone can upregulate the opiod receptors, would that make her problem even worse than before - since her receptors are upregulated and she is gonna get flooded with natural opiodis again? (more receptors - bigger the effect of same amount of opiodis right?) And what abour depression - what decides that some people can get off a medication and some can't? Would getting off the drug at some stage always cause increase in the symptoms of deppresion, due to regulation of receptors? HPPD - there has been people reporting long-term remission of certain symptoms with like Keppra right? I think I have also seen people that didn't get any long-term benefits and basically they have to continue to take the drug to if they want to keep experiencing the good effect on HPPD symptoms. Thanks.

Yeah it sounds like just severe HPPD. I had a period years ago, when smoking weed and using all kind of drugs occasionaly, where I had seen faces a lot, even in cars. I don't have it anymore (even though my cognition and HPPD is much worse). Right now, usually shadows or black things breathe for half to one second, whenever I point my eyes at them. Also whenever my VS or flickering thing was getting worse, I could not concentrate on conversation. Right now I can't but for different reason. I got used to the flickering I guess, so some of these things you can get used to I hope.. and they should get better slowely. I still get pissed off when I look at the sky and all I see is static, but I try to look beyond that - and I think of static less and less each time.. (VS doesnt bother me at all, but one thing Id like to see clearly is the sky..) Eh I don't know if I am helping.. maybe think of some rational or unrational reason not to pay attantion to it? its just my wild guess, I prob couldn't stick to my own advise ..........

I got in contact with Hope about the organization. It's something to consider. Ok, to summer up - I have got few responses, there are few people interested in working on the project. We are looking for few more. Last few days I have spent on improving the survey forms, collecting opinions, organizing workspace for research. After some suggestions I gonna try to do these forms in Google Form - this will take me a while, as I need to create a template for the survey results, but after thats done - it should be much easier for people to fill out these forms. Then it will need some testing and we can start handing them out to people. The next step that I consider important is starting a research of treatments - as that is the ultimate goal of this project. If you like researching information, let us know.

Hey Visual, What about amino acid supplementation - did anybody ever tried that? This looks like a good protocol for replenishing/balancing dopamine and serotonin in people with deficiency. http://new.neurosciencemyths.com/wp-content/uploads/2015/03/Relative-nutritional-deficiencies-yellow.pdf If ths article is right about the way amino acids should be supplemented - then that would explain why people had no success with using just one aminoacid to resolve the deficiency. From what I understood it says that one can't restore his dopamine/serotonine levels by simply supplementing one amino acid eg. 5-htp or L-dopa. Overproduction of one neurotransmitter will result in depleting the other which will in the end be resulting in depletion of the first one as well. These aminoacids have to be administered both at the same time in doses that can differ for each person, but its important to get enough of both to put them in a competetitive state. Then they will be brought back to balance.. Don't quote me on that though, read it yourself. I would love to try this before getting into any serious meds, however I guess its gonna be extremely difficult to find somebody who knows exactly how to carry out this protocol. If anybody knows any amino acids practicioner/clinic in europe where they understand this kind of protocol (or simply know the right way of supplementing amino acids) - please let me know.

lions mane helped me think straight after i drank it, gave me the feeling of being more present. When I played pool it gave me a feeling that I am "learning" it as I play - an interesting feeling. however I react to most things, even to herbs, with side effects - it gave me that weird stingy feeling in my head (same as lamotrigine (lamictal) and flunarizine).. it increased it slightly day by day, so I stopped it. I gonna give it another try soon (also I ordered astragalus)

isnt risperidone a bad idea for hppd

Hello. Me and Pinionlel are starting a new project on HPPD, to which we want to dedicate ourselves. The main goals of the project are to improve the experience of people affected by HPPD, by looking for causes, existing and new solutions, by collecting as much data as possible and providing it in one place (clinical studies, peoples experiences etc.). We want to establish a research group that will be studying all the information gathered. Also we want to be spreading awareness and providing some support if possible. Right now we gonna work with tools we got, but later we want to make a website about HPPD, which will fulfill the above goals. We have a great faith that this condition can be improved. There is many things that haven't been tried yet or that have been tried and did help, but not many people are aware of them. We, the HPPD community, can't count on anybody else solving this problem for us. Its the time we should take it into our own hands. Right now we are looking for few individuals interested in participating in creating the foundation of the project. There is a lot of things to be done. HPPD is a very complex subject, but if everybody gives a little bit we believe we can make some great progress. Firstly, apart from establishing some methodology of work, we need to work on the way in which the data will be collected. Just to fill you in, these are the templates we work on right now: https://drive.google.com/open?id=1sYER4Jpt2ONGjHriOuNXCasWMm3pzIdtGOZJl2dRAC0&authuser=0 https://drive.google.com/open?id=1FeX_Nkr1Q10vpamnNORqwiJllecOGj-9O_dnepzQ6CU&authuser=0 Once we have the templates polished, we can start getting people to fill them out. It is going to give us great statistical information, about dependencies taking place in HPPD, things that have helped or that did harm etc. Also HPPD protocol, could be a great way for some people to stay motivated to keep their routine in order to try to improve their symptoms. There are much more steps we have already planned to take, but I don't want to overload you with information. We are looking for people interested in long term cooperation, while every kind of contribution is highly appreciated. If you want to work with us just by giving your thoughts on stuff, thats great, if you have some more time to spend on the project, thats even better! Everybody can simply do what they like or do best. We need people with all kinds of skills. If you like to join us please PM me or contact me at hppd90@wp.pl . I will be able to present you the whole picture then, so we can discuss it more. It is something we have been thinking about for a while and finally we got a courage to start it. Personally, it feels great. I am really happy, which is a rare thing lately.. Just to let you know - we are not giving up on this project until we figure out how fight HPPD effectively, I can promise you that. Pablo.

edit*

A friend of mine, told me his doctors thoughts about HPPD. He thinks that drugs or other things could have created a problem in the permeability of the encephalic barrier (blood-brain-barier?) and that it could then allow for the virus or other pathogens to enter the brain. I don't know exactly what he said, but the general idea is something along those lines. He advised my friend to do UVBI which is Ultraviolet Blood Irridation: http://www.drsubi.com/bpt/what-is-bpt (on the sidenote, we both probably will try it next month, will report you on that) What i read about it is: your blood is withdrawn, treated with UV light and returned to your bloodstream. This causes some kind of immune reaction (due to dead pathogen possibly) and there are tons of various claims about it, which obvioulsy we can't be sure of yet. This theory of a virus/something else being in the brain goes well with the cases of people having HPPD and candida, lyme disease or having their HPPD caused by antibiotics even.. and also it makes sense when taking into consideration people who reported beneficial effect with drugs/supplements that improve immune system, gluten free diets (which allows Blood-brain-barrier to recover). I decided to check some studies about it and it looks good: [An initial experience of extracorporeal irradiation of the blood in heart surgery patients]. http://www.ncbi.nlm.nih.gov/pubmed/2350039 Positive clinical effect was observed in 8 patients, 4 patients recovered completely. [involvement of hemoglobin in the therapeutic action of blood ultraviolet irradiation]. http://www.ncbi.nlm.nih.gov/pubmed/20364680 "It was shown that ultraviolet irradiation causes photodissociation ofoxyhemoglobin thereby altering the oxygen-carrying function of the blood and improving oxygen supply to cells and tissues." [The efficacy of the extracorporeal ultraviolet irradiation of autologous blood in the treatment of chronic nonspecific lung diseases]. http://www.ncbi.nlm.nih.gov/pubmed/7687907 The paper presents the results of treating patients with chronic nonspecific diseases of the lung by the use of extracorporeal ultraviolet autoblood irradiation (EUVABI). The marked clinical effect recorded after an EUVABI course coincided with the normalization of an erythrocytic membrane morphoform, which suggests that the severity of allergic and inflammatory reactions was liquidated and blood viscosity was improved. [Effectiveness of extracorporeal ultraviolet blood irradiation in treatment of chronic obstructive bronchitis in pulmonary tuberculosis]. http://www.ncbi.nlm.nih.gov/pubmed/9691691 ... has demonstrated a positive effect of the photo-modified autoblood on the course of COB. The findings have suggested that the magnitude of clinical symptoms of COB was nearly halved, the forced expiratory volume per second increased, the counts of stab neutrophils and lymphocytes and erythrocyte sedimentation rate became normal. Analysing the bacterial isolation rate showed a significant decrease in the number of Mycobacteria tuberculosis detected by luminescence microscopy after a session of EXUVBR. [The clinico-immunological characteristics of bronchial asthma patients undergoing autologous ultraviolet blood irradiation]. http://www.ncbi.nlm.nih.gov/pubmed/8079478 Ultraviolet irradiation of blood studied in 201 patients with various forms of bronchial asthma proved to be the most effective in "aspirin" and infectious-allergic forms of the disease. Analysis of immunological changes showed that ultraviolet irradiation of blood brings to the norm content of IgG in serum, influence beneficially quantity and functional activity of T-lymphocytes, reduces auto-immunization and sensibilization to Streptococcus. [Effectiveness of extracorporeal ultraviolet blood irradiation in patients with chronic obstructive bronchitis] http://www.ncbi.nlm.nih.gov/pubmed/9553435 With EUVBR, most patients exhibited normal temperatures, less signs of intoxication and coughing, and rare rale in the lung than in the controls. A most objective criterion for the efficiency of EUVBR was a marked increase in the forced expiratory volume per sec after the first 3 procedures, which improved the patients' condition, diminished exercise-induced dyspnea. The hemogram of the patients undergone EUVBR in combination with antibiotic therapy indicated a substantial drop in erythrocyte sedimentation rates following the first 3 procedures. The growth of pathogenic and opportunistic microbes from the sputum showed a great (10-fold) reduction when EUVBR and antibiotic therapy were concurrently used. The findings suggest that EUVBR has high therapeutical benefits in the treatment of COB. If you would like to add something, please post it and I will paste it into the top post. I was actually afraid of what I'd find, that this UVBI treatment is another magical device that cures everything in some unexplained way - but after reading these few studies it looks more legit to me. If you like this way of researching new drugs/treatments and feel like joining us in our project to help so we can find the solutions more efficiently, please e-mail: hppd90@wp.pl here you can read more about the project: http://www.evernote.com/l/AbRcywcu-55EIYDeDPUG3GLpBqsd1cRmkHc/ We need every help we can get and I mean it. There is a lot do ahead of us.

Im sorry after talking to Pinionlel it turned out that I confused Zoloft with Mirtezapine. It was Mirtezapine that was spacing me out. I will edit previous post.

LethargicAcid, I dont know if thats that you are asking me about, neither I don't know if anybody here really wants to listen to it, but since you asked.. All i will say is that things that were most important to me, that made me a little happy in this nasty thing called life are gone. The source of my happiness was being able to understand things around me, people, thoughts, ideas.. being able to share them and even more importantly interacting with the world, the people, exploring things, learning, experiencing, creating and so on. Now I don't feel like doing any of those. My abilities to do those things feel massively limited. Maybe I can still do some of those things - but why would I if they are not pleasurable anymore, instead they are painfull as fuck. Interaction with other people is a big deal to me (its also needed in most things I ever wanted to do). Now I try to avoid people as much as I can. I have bearly anything to tell them anymore except for my problems, or nothing at all.. (I hate me being talking about problems and I guess its not what other people want to hear constantly..).. I can't even focus on what other people have to say to me, I catch myself not listening at all..) Because of this most of my wonderful friends and family feel like they were dead to me. I could write more but fuck it man. Everything important/relevant to my happines, is gone. I will never be happy if I don't get this back. I was really rich for few moments, got really lucky with a certain investment. I wasted it all on life and other really risky investments (rock n rolla style).. I learnt my lesson, but anyway - I know I gonna make this money again within 2-3 years. But again. the process of making it has become annoying rather enjoyable and even the thought of having so much money isn't enjoyable anymore. Instead of having this money Id prefer to feel ok on everyday basis and be able to enjoy any of the things I like - whoever has that is the richest guy in the world. I look at the drunks in the street that "their life is fucked". Some of them tend to laugh. Sometimes I look into their face when they do and I can see joy. I envy them. The project I wanna do, is covering both of the aspects you are talkin about. You can't count on just one one person (or give up just cause one other person did) especially when we are dealing with such a complex problem. Now you will be able to count on many, cause there is more people interested in this project. They are excited as me. I hope we will be able to provide the support that you talk about, apart from the research. so don't go and stay tuned

I wanna make a separate post about it in future, but in the mean time i will just ask quickly.. what if HPPD is caused (because it is) by different things/drugs/hormone imbalances/lymes etc... How do we know, that I have an opioid overload? The drugs that fucked me up the most were MDMA, LSD (those two, 6-7 years ago) and within last 2 years: Ibogaine, Magic Mushrooms (in chocolate form, from amsterdam. - my polish fellow called it Truffle (?)), also took xanaxes and valium about 20-25 times, which I think left a scar on me - the tolerance build up was very fast and later on I had to take large doses of it to feel the calming effect. (maybe they "depleted me from GABA" or something along those lines?) So, did any of this substances could cause the opioid overload, from any logic point of view? I don't know a lot about neurochemistry, hence I am asking. Once again I will remind - Naltrexon didn't make me feel any different after taking it 2 times.

Im happy for you man. Im not so lucky - but either way.. my life as well as your life can be improved, always. Im here for this reason, not to be whining about how bad my life is. Its always good to feel better aint it? So, LethargicAcid, don't rely on the website, but it would be great if we unite and do some work. If one has not much time to do it - even an hour a week of some kind of help to the "hppd ultimate project" - lets call it . Many great things in life happen by accident, (new people, inventions, hobbies etc.), maybe accidentaly within that hour somebody could come across something thats really important, even if its only a small clue, but leading to some bigger idea. I don't know what about you guys. I am dedicating my life to looking for solutions for HPPD. And you know what.. im fucking excited about it. This project is like the most positive thing that I can think of within last 2 years.. it would be great if any of you come along! I will be making a group chat soon - come by and see if you like it.

http://en.wikipedia.org/wiki/Acamprosate looks interesting, have a read. I found it in this book "Tinnitus: Pathophysiology and Treatment" (google e-book). One section's title is "treating tinnitus with acamprosate". Check out the the content list -> "Treatments". It looks like there is a lot of interesting info/different treatments in the book and Im sure some of them could relate to other HPPD symptoms. http://books.google.com.br/books?id=XydUtbVHtdEC&pg=PR5&hl=pl&source=gbs_selected_pages&cad=3#v=onepage&q&f=false if the link doesn't work, try this http://books.google.com.br/books/about/Tinnitus_Pathophysiology_and_Treatment.html?id=XydUtbVHtdEC&redir_esc=y any thoughts

hmmm... that would be some sad documentary - I can picture some people talking "I feel like a zombie, my life is hell" and so on... It could be even somehow interesting for an ordinary man.. The documentary would be good, but at later stage I belive. Its gonna take a lot of work and probably bit of cash to do it (traveling around to do interviews etc.) especially if you want it to be done well. I suggest - first organize ourselfs (on the forum as well as some kind of chat like skype), collect some ideas, everybody can do what they like/do best, start some research collectively, build the website - which would also spread awareness and include all the information on HPPD, causes, ways of dealing with it. There is like thousands of people affected and they don't know who to talk to anymore cause they can't get diagnosed and the ones that did - still don't know how to go about it. Every HPPD patient has to bring his own research to the doctor to get something right prescribed. The website would be all the info on a plate, for anybody who needs it: patients, doctors, researches.. It would be also a good source of info, for the documentary itself at later stage. Donations also could be an option on the website. if anybody wants to text/chat about it live, send me a priv message with your skype nickname

shit if you had asked me about it few months ago.. im after loosing my stock, due to stupid decisions (didn't cash out investments in a good moment) im hoping to make this cash back, but it will take maybe a year.. what do you mean - turn it into 10 mil? Either way - don't you wanna do it in your free time, for free/for yourself? Im thinking of doing the same sooner or later, but its hard when your brain feels like a jelly. There is a lot of knowledge to be learnt about neurochemistry of brain in a first place.. It kind of scares me to even start, but I hope to that I will steadily get into it soon. Maybe we should try do some research together - get as much data into one place/website, then gather some thoughts.. We could do it even few hours a week, but in few months time we would have a good bit done. Also check this out - I think it could be essential for what you want to do: http://hppdonline.com/index.php?/topic/4459-i-have-an-idea-for-a-website-that-could-help-us-in-finding-solutions/ come on guys lets fucking unite and work this out.. nobody is going to do it for us.. my idea would be: lets get all we know into one place, like google sheet or whatever . lets make a skype group chat so we can echange info and improve our understanding on the subject (and we get to chat about some bulshit on the side) and then we can make some solid "database" on what we know, that anybody then could comment and verify and so on... hope1 i put my hope in you

Everybody is entitled to their own opinion LethargicAcid.. the truth is we are fucked, but different people have a diffrent view about it. I refuse to accept life as it is right now. Maybe if I did enjoy life in any way at all, maybe there would be a chance for me to accept this condition/life. Accepting it is totally against my personality - something that I don't think can change a lot.. and against my philosophy. I compare it to be getting raped or something and having to smile at the same time, where smile stands for acceptance. Would that ease your pain? I do not think so. Even if it did would you smile knowing that it will take even more of your dignity, than already has been taken, away from you? Now its more like a trade off. I feel being raped by god in a metaphorical sense, i Just can't cheer to that.. and im not saying this to make it sound cool. I mean it. I don't think we are any miracolous beings, we are more like viruses or actually medium for the virus(dna), that happens to be conscious of it. I dont expect anybody to understand me or agree with me. Then as well.. imagine if every sports man accepted their failures, would he ever be able to reach the top? In my view the answer is no. And im a born rock'n'rolla.. (that can't takes drugs no more, or socialize.. lol anyway..) im either on the top of the world or id rather not be here at all. So.. I will still give few things a shot and try to get out of this situation.. Am I gonna accept my condition? I hope not. Maybe if I do, I will not stay motivated enough to find a cure - and never reach the top of the world? what kind of rock'n'rolla would i be then? So please people who say they accept their condition - erase their posts lol.. LethargicAcid just joking

every time i took zoloft mirtezapine, next day i would feel completely spaced out (i guess thats increase in depersonalization). Don't know if it affected me longterm, but I dont think id want to be spaced out like that in day to day life. (i was taking quater of a minimum dose - im sensitive enough to substances). Piracetam only interaction could be that it increases blood flow to the brain and maybe something else too, which strengthens the effect of other drugs. You should consider this while setting a dose of other drugs - but maybe it doesn't make any drastic changes for you, i don't know. For example - when I took piracetam Id get a bit more drunk then usual, which was kind of nice, but when I smoked weed after taking piracetam (even small amounts), it would be a kind of "psychodelic" evening for me, due to weed hammering me down much more than usual, also triggering my hppd/depersonalization more than usual. So please be careful with zoloft and piracetam with other drugs.