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Hallucinogen Persisting Perception Disorder (HPPD) Support Forum


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Johan0987 last won the day on September 20 2018

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  1. Yes, i think that’s a very good one. I notice that i’m starting to think like that more and more. You can’t do more than the best you can. At first when i had a spike or something else HPPD related, i kept resisting and fighting it. Now i realise that’s pointless, some things happen out of your control and the only thing you can do is try to accept it and deal with it the best way possible. Also, fighting and resisting only cause more stress and negative feelings. I don’t think it’s really that obvious. It took me 2 years to get this mindset and although my mindset changed a lot, i think it can improve a lot more because i’m still struggling with my own thoughts etc. Also, when i read this or other internet channels about HPPD, i often read people just giving up or get angry/depressed about it. The right mindset is the most important thing. It’s hard to get that right and can take years, but it makes the difference between having somewhat of a enjoyable life or a life that’s only about the HPPD. Also, no one can know what will happen in the future. Maybe you will recover quite good over the years, if you keep trying. Maybe not, but I keep reminding myself that it will get better somehow and that keeps me going also.
  2. Thanks for the response. I know, quite frustrating that i've got this massive spike right now but progress was there so i will continue to go forward from where i left off when the spike has passed. Thanks for the info, but i don't think i really have a depression. Ofcouse, dealing with heavy HPPD is no fun at all and triggers negative thoughts and sometimes suïcidal thoughts, but i don't feel like i can't enjoy anything or want to do nothing all day. I definitely know / notice the side-effects and negative effects of the meds, but the positive effects of the meds are at the moment more important to me than the side effects. One thing i noticed while tapering, was that i got some withdrawal symptoms (feeling like everything is in "autopilot", bit more anxiety, etc.), but that lasts for about 4 days and then i things become "normal" again. This drug is very good for somatic symptoms of anxiety . I use propranolol 10mg is very good and sometimes it helps me even psychologically Yeah i started on Clonidine, and noticed that it made me more calm (or maybe like you say it reduces the somatic symptoms of anxiety). The Clonidine wasn't enough to help me get up from my "crisis" so my psychiatrist added Clonazepam and since then i'm on these meds (in december a year). Still happy to take them at the moment but it would be great if i'm able to come off of them one day. Yes, that's the mindset we all should have. I often feel like giving up, but somehow i always manage to get myself together again.
  3. @subzero yeah the HPPD is heavy right now. Quite frustrating and depressing because i made very slow progress in slowly building up activities and at some point the visuals didn't bother me that much anymore. Now it's really heavy and it feels like it's 3 steps back in the slow progress i made. But, i'm still not giving up, still trying to live life as normal as possible. I think that's the right mindset, no matter what happens, keep trying to live your life. I think at some point i will find a way to deal with it. Now i definitely can't, but there will come a day that i'm on top of this, i'm sure of that. The meds i'm on right now are: 1,375mg Clonazepam a day (started on 2mg, very slowly tapering when possible), and 0,050mg Clonidine a day. Also i add Melatonin to sleep better. These (especially the Clonazepam) help to reduce the most heavy symptoms. At some point i have to go off the meds (don't wanna be dependent of benzo's), but right now that's not the right call due to the spike. Also, with HPPD, meds are just a small part of the treatment and i would advice only to go on them if life gets really unbearable (which my life became almost a year ago). The non-meds treatment is the most important you can get (like: acceptance, healthy lifestyle, stress reduction, living life as normal as possible, seeing a psychologist if necessary, etc.)
  4. Hey guys, Apologies for the extreme late response, i don't visit this forum a lot because it's not very good for my mental health to keep reading about HPPD. Unfortunately i'm worse now than i was when i last posted here. However, i can deal with it a lot better and i think (and learned) spikes are part of HPPD, so i know now this won't last forever and things will get better again. My mindset has improved a lot thanks to therapy and some forum members. Hopefully over the years i will be slowly improving. I'm still on the same treatment as i described before, which makes (HPPD) life a lot easier. @Gabriel S.D: How u doing now? Any improvements? Adrenaline (or any kind of other stimulants made by the body) can indeed be a trigger, so avoiding stress as much as possible is a good thing to do. Going to the gym is always good for anyone's health and if it triggers HPPD a little bit, i wouldn't give up the gym because of that. Have you experienced exercise makes your symptoms worse?
  5. Hey, Good to hear that your HPPD isn’t too bad and that you are recovering. DP/DR is probably the worst symptom, so good to hear that’s gone (with me for the most part also but sometimes it comes back). You’ll get used to the moments when it gets more noticeable. I have tinnitus (not very bad) for many years now (long before the HPPD came) and at first i couldn’t sleep because of it but now it doesn’t bother me at all anymore. I think the steps you are taking to let it heal are good, you’ve found your triggers. Never using drugs again is a very good step. Even caffeïne or nicotine can worsen HPPD very bad (speaking from experience unfortunately..). To answer your questions: I don’t take thiamine, so don’t know if it helps. There are a lot of supplements and/or meds that potentially can help but what works for one can not work for another or worsens another one. If you want to go the supplement/med route, i advise you to visit a doctor (best is one who knows HPPD, but they are can be hard to find). Experimenting with supplements / meds is a bad idea with HPPD in my opinion, because your brain is much more sensitive to substances than before and you can’t know before what will trigger you and what will help. My main triggers are: - stress / anxiety - any kind of stimulants, can even be adrenaline wich is produced by the body itself. Very important for me to stay calm haha. - work / rest balance is very important to me because when i work too much my symptoms get worse, i have to get enough rest every day (everyone does but i need more than a “normal” person). I can’t say that there are kinds of food that trigger me, so i don’t take a special diet. Just trying to eat healty from day to day, sometimes i eat unhealty but don’t notice that it triggers me. Last advice: This is not to scare you or make you feel bad, but i want to warn you. My HPPD wasn’t very bad at first but did get a lot worse over the years because i didn’t know my triggers and didn’t listen to my body. At least for the next few years(!) you have to monitor yourself to make sure your symptoms aren’t getting worse again, and stay off everything that triggers you. You can’t drink a coffee or smoke a sigarette (if these are triggers) if you aren’t recovered, so don’t. I got a very bad relapse due to nicotine. Your steps to recover are good, so i think if you keep doing that and look out for yourself every day, you can make a pretty good recovery. There will be some symptomes left but you’ll learn to live with it. All the best!
  6. I've sent your post directly to my doc, so very likely he will reply within a week. I can't explain why it would help with HPPD, the only thing i know is that every HPPD case can be very different and different people react very differently to meds and supplements. So i only take meds with care and we (my docs an I) are thinking every step i take through. Thanks a lot for sharing and greetings from the Netherlands!
  7. Thanks for the response, I didn't hear about MMS or chlorine dioxide, also never for treatment of HPPD. I will share this with my (HPPD specialised) doc, maybe he can research this for optimising his treatment. I did hear about Kratom from another former HPPD'er, he is also very positive about this supplement. Maybe will give it a shot someday. My HPPD is a lot different than you are discribing, i just have a lot of visuals, brain zaps, anxiety, head pressures, sometimes flashbacks, sometimes DR, etc. I (luckily) do not have the feeling that i'm constantly tripping. That must have been a very bad experience. About your experiences with a psychiatrist: a psychiatrist can definitely help but you have to find one that is familiar with treating HPPD or is willing to do research into HPPD (mine is..). From what i hear, a lot of meds are prescribed to HPPD'ers that just make things worse. Luckily, i live in the Netherlands where there are docs who have experience with HPPD, and can help to find the right treatment (meds are only 10% of the treatment). For now i will stick to my current medical treatment with Klonopin and Clonidine, as i know this works (somewhat) to ease the symptoms and feel "normal". I'm making very slow progress, but progress is there so i'm hoping i will be 100% funtional over time again. Maybe someday i will try the MMS stuff, but for now i'm happy with the meds i'm on now. Thanks a lot for sharing this info! That will definitely help in my personal treatment but also in the research by some docs in the Netherlands.
  8. Hi Gabriel, Thanks for the response. I don’t think i can call it recovering because the symptoms are still quite severe (they have lessened a bit but there are triggers that can make it wore again). On the other hand, the way i’m dealing with it is a lot better. Of course, i’m hoping the symptoms wil subside over the years, because thats what happens to a lot of people with HPPD (of course, everyone and every case is different). How severe is your HPPD? The best tips i can give you: - go to a doctor/psychiatrist who is familiar with HPPD. They can help you to get better. What country are you from? Maybe i can help you to get in touch with a good doc. - stop doing all kinds of drugs, including cafeïne, nicotine and all other substances. Even substances that raise serotoinin levels are a trigger. - start living as healty as possible. Exersise, healthy food, a good sleep pattern, do lots of social stuff and things you like to do. The more you keep yourself busy, the less you think about it. - this can be a hard one: try to live your life as normal as possible, as like you don’t have HPPD at all. Yesterday i went to a festival for the first time in a long time. I was quite anxious before, and when we were there i felt a bit “uncomfortable” in the beginning (maybe that was a bit of DR). But the longer i was there, the more i started enjoying myself and the more i felt “normal”. The more you challenge yourself with these kind of situations, the easier it gets over time. - start figuring out what makes you feel better and what doesn’t. This helped me quite a lot to find a good week schedule that works for me right now, i have a good balance between work, socialising/hobby’s and rest. - the last and maybe the best to remember: HPPD can be a very hard disorder to deal with, but it gets better with almost everyone. You get used to the symptoms and deal with it, or in the best case, you will recover quite good. I remember myself often when i’m feeling down, that there are a lot of people with a lot worse (mental)health conditions than mine, and they can deal with it as well. If you ever need advice or someone to talk to, send me a PM. We’ve also created a FB group for dutch people with HPPD where we share info and support each other. https://www.facebook.com/groups/HPPDNederland I hope this will help you even further.
  9. Hi Guys, i just woke up and started thinking about this forum. Since my relapse/worsening in november 2017 i didn’t visit this forum a lot anymore because it isn’t very good for my mental health. I’m trying to focus as less as possible on the HPPD. But this morning i thought that i at least could give an update about how i’m doing now, since some members have helped me a lot. Well, compared to november 2017 (see posts above) i’m doing a lot better. On the other side i still have a long way to go because my symptoms are still quite severe (but have lessened a bit) and are hard to deal with from day to day. My HPPD is a disability right now because i can’t do the same stuff as “healthy” people are doing. Lets start with my symptoms right now: - pretty bad visual snow, in daytime not very noticable but in dark situations it’s pretty heavy. It’s like there is a layer of VS before my normal vision. I can handle it but it’s sometimes hard to deal with. - trails when looking at fast movements (like waving hands, a phone screen waving before my eyes gives a light trail, etc.). Also pretty long afterimages when i look directly into a light source (like more than a minute or so). Sometimes in notice a bit of floaters but it isn’t that bad. These symptoms have improved a bit and i’ve gotten used to it so it isn’t a very big deal anymore. - sometimes my entire vision looks “too bright”. Don’t know if that’s DR but when that happens i feel a bit disconnected. This symptom is very hard to deal with. Luckily this doesn’t happen very often because i would go crazy if this was permanent. - head pressures and brain zaps. Are often not noticeable anymore but when i have a busy day or week these come back. - some brain fog / cognitive issues / fatigue. Especially my memory is not very good. It has improved so i’m hoping it will slowly get better. - quite severe anxiety, but on the other side i’m able to deal with the anxiety a lot better due to my coaching and the meds i’m on right now. I think that’s about it. Due to all these symptomps, it’s a disability and i can’t do a fulltime job now because my symptoms get worse when i have a too busy day or week. When that happens they get better in de next couple of days but it’s really looking for a good balance in work / socialising / rest. I think i also have found the best treatment possible in the Netherlands. - i visit a psychologist once every 2 weeks to help me deal with the HPPD and slowly building up my life again. I now can work 2 mornings a week and deliver good quality work. This feels good and i’m hoping i will be able to work more in the future. - in the same clinic as the psychologist, there is a psychiatrist who prescribes me meds to help deal with the HPPD and anxiety. This psychiatrist is advised by HPPD specialist dr. Alderliefste. Meds i’m on right now: 2x Clonidine a day, 3x Clonazepam (Klonopin) a day. I’m tapering the Klonopin very slowly (over a lot of months), because it’s helping me pretty good but i can’t stay on this med for the rest of my life. - sometimes i have direct contact with HPPD specialist dr. Alderliefste. He’s helping me very good (the best way possible), mostly he advises me what to do. - now the most interesting part: like the most of you guys, i had an MRI scan from my brain to check if there is no other cause for the symptoms. As expected, the result from the MRI scan was good and there were no abnormality’s. With this result i am sent to a hospital connected to a university, where neurologists are researching and studying visual snow / HPPD. Dr. Alderliefste also helps and supports this research. When everything goes to plan, i will see a neurologist there (with knowledge of VS / HPPD). He will medicly examinate me and hopefully can give advise on optimising my treatment. Also there is a possibility for me to help the research / study as a patient. So i’m very curious about how this will work out, and if the doctors understand whats happening in my / our brains. I definitely will keep you guys updated if there is any interresting information to share. Well, that was quite a story to write. Overall i’m doing / dealing a lot better, but there is a long way to go. Hope you guys are also doing OK! Looking forward to the responses.
  10. I have a question. My visuals are now such shit that it even hurts my eyes and i cant focus my eyes anymore. Klonopin works to help calm the visuals. My thoughts were: if Klonopin works, will there be a good chance that Keppra or lamical works also? Becouse they are both anti-epileptics?
  11. Ok, another update. I completely lost it today. I went to work and the visuals were so intense that it drove me crazy. I was also so tired and had very bad brain fog, i couldn’t handle the day. On my way back home i thought about my situation and it made me extremely sad. At home i started crying (wich i haven’t done for years). I just can’t handle another day of this shit. I feel so lost and hopeless. I let myself down, see my parents suffering due to my situation, my life is ruïned and i don’t see a way to make it right anymore. I just hope that i can make it right again and get a second chance. I was on my way but i messed up. Are there any people here who relapsed this bad and made it right again? I called my GP today and explained that my situation is unbearable. I can’t control myself to stay calm or at least try to enjoy the things i do. I get confronted every second of the day and for that reason i can’t stop thinking about all the shit thats going on in my life. My GP decided to send me to a psychiatrist with emergeny. I hope that will help me, maybe with some meds to calm down the symptoms so i can make it through the day again. And then try to make things right again What meds can be helpful? I don’t want to get on SSRI’s because i think it’s gonna make me trip even more. I need something that calms down my brain. Personally i’m thinking: - keppra / lamical worth a shot? - benzo’s maybe klonopin? - anything else that can be helpful to help me through this?
  12. It's almost 2 weeks ago since i've posted my last post here. I want to give an update so i can tell my story and maybe you will find it interesting regarding my pretty desperate openingspost. Well, i'm doing a little bit better since the worsening. When i got the HPPD "attack" i lost myself completely. I just couldn't recognize myself in the way i was thinking and how i was behaving. I had very bad cognitive issues, my visuals were worse than they've ever been. Like said before, i felt like a zombie. I'm still having a very hard time at the moment but also i'm doing a little bit better. Things i've done to help myself right now: - Taking clonidine 3 times a day like my doc prescribed me. It helps a lot for anxiety, panic and helps me cope overall. The visuals are still the same with clonidine. - Taking melatonin at night so i fall asleep directly when i'm in bed. This helps so i don't think about it when trying to sleep so at least i can have a good night of sleep. I start to notice that it maybe makes my visuals worse. I'm still undecided if i will take this any longer, because without it i just can't sleep right now. - Taking some walks in nature with a friend, and afterwards we will have some lunch at a restaurant. This makes me feel better and more relaxed. - Take a lot of rest - I have worked for 3 hours yesterday. I think it worked out pretty well. I felt more "normal" during the time i was working. Although any longer than 3 hours was too much to handle for me right now. But i will see this positively because it is a small step forward. - Trying to live as normal as possible. This is very hard but i think this is a very important factor in the recovery / coping process. I just came back from a restaurant with my family and i had a good time without suffering too much, so that's also a good thing. - Talking to my GP and psychotherapist about this all. I maybe will see a psychiatrist in a few weeks so i have a little hope, but when i think more realistic, i don't think he can help me either. I don't think i want to go on heavy meds (like SSRI or lamotrigine, too scared that they will fuck me up even more, or the withdrawal will fuck me up). Some docs want me to go on SSRI's. Maybe it will help, but i've had an negative experience with L-tryptophan (made HPPD worse and was acting weird on that), so i'm scared that it will make things worse. Improvements: - Anxiety / panic is gone (i think due to the meds) - Cognitive issues are a bit better - A little bit more energy - I can handle everyday life a bit better now These are the good things, i try to focus on that but mentally i'm pretty fucked up. Things are just not looking good for me right now so i noticed i'm getting pretty depressed (with sometimes suïcidal thoughts) in the past few weeks. I just can't see the good things in my life anymore. It's a constant battle that lasts for a year now and i'm done fighting. Nothing seems to really help to improve my condition, and just when i thought i was recovered pretty good, my HPPD gets worse than it's ever been. My motivation to go on is pretty much gone. I really can use some positive news but that doesn't seem to happen. So that's pretty much it for now. Some very little improvements but in the big picture it just sucks... P.S. Oh, and the antibiotics didn’t seen to make it worse!
  13. Thnx for the reply. Well i obviously have to recover somewhat because right now i just can’t be productive. And i know that’s possible because i did it before. The only thing i’m really worried about is my vision, if this doesn’t go back to how it was a few weeks ago then i’m having a BIG problem. A full recovery would be great but i’m not expecting that. I just want to be stable and be ready to go on with my life. I hope that this spike will go, because a few weeks ago i was doing pretty good and i was working 2 days a week. Right now i can’t even think about going to work. Everything seems different now. I realised that with everything i do or put into my body i have to check how it affects me. Maybe if i can find some patterns and adjust to these then my symptoms will calm down again to the way it was.
  14. Thnx for the reply’s. I just took my 2nd amoxicilline and i did notice that i got some more symptoms that i didn’t experience before but thats also what happened the past week without the antibiotics so it’s hard to tell. My finger really hurts so for now i will continue and if things will become unbearable i will call my doctor. I also plan on stopping the clonidine as i think it makes my visuals worse and i want them to get less, and i don’t want 3 different types of meds in my system haha. I hope i can manage it without the med. If not, then i have some good old benzo’s but i dont’t want to take them too often and risk getting dependent. Melatonin for sleep seems to work good for now.
  15. Thnx for the response. I will defenitely see in whats ways i can let my body heal naturally. And i know that it will take a lot of time. It took me a year to recover somewhat and i could live a little bit. Now it’s back and a lot worse than a year ago. Right now i’m just very frustrated because i’m more fucked up than i’ve ever been (and didn’t know that this condition could get so bad without doing more drugs). My vision is such shit that i can’t relax and watch TV anymore and driving a car (at night) is very hard right now. Also i don’t have the energy to do anything and if i do too much than my condition gets even worse. I can’t think straight anymore so i can’t make the right decisions about my further threatment. My dad has to make these decisions for me. My sleeping patterns are also completely gone. I have to force my body into sleep with melatonin and sometimes a benzo. It just completely sucks right now but i guess i have to find a way to deal with that. Well i’m very unstable at the moment but right now i would never kill myself (although i’ve had some suicidal thoughts in the past week). I defenitely want to go on some meds if they can help me get through this (i’m already on Clonidine wich helps to stay calm and feel a bit more “normal”). One more question. Since you know really whell wich substances can make this condition worse: do you know if antibiotics can make my condition worse? I think i’m gonna need them for my finger but i’m scared as hell that it will bring me even further into this shit and i defenitely can’t handle that.
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