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Hallucinogen Persisting Perception Disorder (HPPD) Support Forum


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Everything posted by whyohwhy

  1. Thanks for the reply. Did you start lamotrigine recently or have you been on it for a while?
  2. So I've been on lamotrigine for a few months. Gradually went up to 100 mg. No sense of side effects but a few days ago symptoms worsened. Just when it seemed the medication was working of course. However, I've heard from you guys that it can take up to a year to really see long lasting changes. What do you guys think - should I remain on 100 mg as to prevent a worsening of symptoms, go down to 75mg which i started noticing improvements and no signs of worsening symptoms, or keep titrating up until 200mg like most people here?
  3. Hi there... just reaching out to everyone. Does anyone who has OCD have experience taking lamotrigine and if so did it help with intrusive thought type OCD? I happen to have severe Obsessional symptoms of OCD and am worried as I have just come off of clomipramine (around a month ago). However, I started on lamotrigine and plan to just stick with that for about a year without adding a SSRI or tricyclical on top of it. Last time i came off my ssri and was on no medication life became a living hell and I had to go as an in-patient to a mental hospital to treat the ocd. I'm hoping lamotrigine will have some added benefit to it...
  4. @justhere Hey, just like everyone else has been saying: hang in there and never give up on life. I know it sounds redundant or repetitive but if you keep repeating it to yourself you can trick your mind into believing it and give yourself the willpower. Side question: Could you elaborate on how clonazepam made symptoms worse? For me and quite a few others it does wonders with helping with visuals, anxiety, dpdr so I'm interested to hear on your experience with it.
  5. I basically got my doctor to prescribe lamotrigine through persistence mainly. I also brought in reputable medical reports and case studies of where lamotrigine was successful and so eventually he abided to prescribing me it.
  6. hmmm in my opinion, if it is your first time taking a medication approach... I would try for either Keppra or Lamotrigine. These meds have been most studied and trailed for the condition of hppd and based on what I've read on this forum have been the most successful.
  7. hmmm I've come across hearing something like that as well. I'm also curious on whether going to see a chiropractor might help... it has been something I have been looking into.
  8. I would try and stick with it for at least a month. A lot of people notice a worsening of symptoms before things improve. I know a lot of people who have visual snow and find this medication is helping them a lot to make their symptoms bearable. If you are still mentally struggling and even more so with it in a month, discontinue. But I'm no doctor. Here is a video of some guy whom verapamil has helped: https://www.youtube.com/watch?v=KSHUcxkPJoA
  9. Been feeling the same pretty lately. I'm pretty active these days on this site if you want to message and talk.
  10. I would give it some time. Your symptoms sound quite mild but this is just an inference based on what I read in your description. Let this be warning that maybe your body is susceptible to changes due to drugs. I would take it easy with recreational drugs in the future if you do choose to continue. If you wish to be safe and on the side of caution, refrain from using any type of recreational drug. And yes, unfortunately this does include alcohol. I highly recommend this. However, I know this can be a hard thing to do and impossible for some people who are in the habit of that lifestyle so if you do choose to continue with recreational drugs I would take it easy and space out the times in between intoxication. If you are uncertain if what you are experiencing is some kind of form of HPPD I would recommend to stay sober for a while, eat helathy and stay active. Try and find alternative healthy activities and hobbies other smoking weed, getting drunk and partying. Welcome to the community and I wish you all the best of luck in recovery. Keep us updated on how you are doing 🙂
  11. I heard the same thing as @palinoptical panopticon Does anyone have any updates on that?
  12. I've heard about people with visual snow being treated with this medication. From those sources it is said to be very helpful. Hope it works! 🙂
  13. Subscribed as well. If HPPD has given me anything good it is this massive amount of determination to conquer and rid of it.
  14. Interesting... I never heard of Inositol up until now, but looked it up. I guess its just a Vitamin B8 dietary supplement? Correct me if I'm wrong though. And yeah I guess everyone is affected differently by medications. I know that my body was VERY sensitive to the withdrawal affects from Zoloft. I swore I'd never go back on after. However, I might have to find a SSRI that works. I heard somewhere that Prozac may help with palinopsia which is my worst symptom to date.
  15. I experience the exact same when exercising . I even get nauseous quite easily and dizzy like I'm going to pass out from doing 1km runs and before HPPD i used to run 10 km pretty regularly as a casual run. Have you tried lifting weights or different types of stretching?
  16. Hi Everyone, I suffer from pretty debilitating OCD cocurrent with HPPD. I have been on many SSRIs and I am now on the tricyclic anti-depressant known as Clomipramine. All of these have had such horrible side effects, with acute worsening of my HPPD symptoms however have enormously helped with my OCD. I've kind of had to outweigh the positives with the negatives. I'm trying to come off of clomipramine with the help of a doctor but I fear being on no medication with cause a relapse in my OCD where I will have to be hospitalized. Does anyone experience OCD whether severe or mild who uses a medication that helps with both the OCD and HPPD without causing any worsening of the HPPD? Thanks for taking the time to read my post
  17. I was just curious so I thought I'd post an inquiry about this. Does anyone have experience with any medications which have helped with diminishing the starburst, halos, streaks of light? Especially those at night you see around streetlights and car lights. It's very bothersome and is actually getting worse for me. I currently take Clonazepam as a PRN which helps quite well for decreasing after-images but does nothing in terms of the bright lights. I am hoping to find something to help as it really makes it hard to walk, drive or do basically anything outside at night. A new symptom that has become very irritating is that of a glitter-like effect in the snow. When i walk at night during the winter this year, everywhere where there is snow (which is basically my entire field of vision) its like looking at shimmering glitter particles that reflect every single light into my vision like flashes of light. If anyone has any experience with helpful medication for this, any comments to this post would be greatly appreciated. Thank you 🙂
  18. @Bursting Aura Apologies for the extreme delay in responding. Just under a year *yikes*. I have tried to stay off this page as reading into symptoms can definitely provoke my visual symptoms as well as the OCD I suffer which can make me obsess over them. I guess you could say this was the reasoning into what took me so long to answer you. In regards to how I am doing nowadays... In the beginning of 2018, I actually spent several months as an in-patient in a hospital to combat OCD that was so severe I could care less about the HPPD I suffered at the time. I was administered the tricyclic anti-depressant Clomipramine (Anafranil) which helped the OCD but did nothing for the HPPD (in fact, I think it aggravated symptoms as it works similarly as SSRIs). I also convinced a doctor (through bringing in medical reports) to prescribe me clonazepam as a PRN. It worked very well in diminishing after-images or at least relieving the anxiety I experienced with the after-image visual distortions. I read a post by @Jay1 where he described how he administered benzos three days a week or something like that at a low dose as to not acquire a tolerance to them. I went with that method which I found to be very helpful. I even went a month without clonazepam and did not experience withdrawal. I abstained from alcohol and weed for about a year but nothing seemed to drastically change with my HPPD. Things were quite good this year after spending time in a hospital treating my OCD... HPPD was there but it didn't bother me that much. I do not want to sound negative but unfortunately this month has been quite horrible in regards to HPPD. I have acquired new symptoms which have caused me to have anxiety, panick attacks, insomnia and suicidal thoughts. Hence, why I am back on this site. I remain hopeful however. I'm seeing quite a good doctor who I am doing CBT with and its really helping me learn that I can still persue what I want in life despite being tortured by this visual field nightmare of a disease. Still taking clomipramine every day and clonazepam as need be for meds. Anyways, enough about me -- what brought you across my post Bursting Aura? If you're still around; how are you doing with your symptoms?
  19. This is very good news and congratulations. It must feel amazing 😃 Thanks for posting. It really helped me get motivation that I can fight this thing despite how hard it could be some nights. Question: Were you taking any medication to aid your progress/help with the symptoms or did you abstain from using any form of pharmaceutical drugs?
  20. Thank you for the response HDDer, I appreciate it. This was some solid advice. You are very right about the acceptance part. I think when I accept having to live with these visual disturbances and bouts of anxiety is when I really CAN find peace and enjoy life. It is those bad days however where I am so mad with myself for entering into this nightmare I can't wake up from that I refuse to accept I have to live with this disease or whatever HPPD is. *sigh* But I will definitely have to check that facebook page out. Thanks. I can definitely agree with you regarding the negative correlation with the class of drugs known as SSRIs and HPPD, especially in my experience. I believe when I was taking zoloft it masked the visuals by reducing my obsessive compulsive behaviour of checking them but in the long run was worsening my anxiety, dp, and dr. When I came off of the drug is when the visuals were aggravated and worse then it had been during my initial onset. On top of this the withdrawals were terrible. Every single withdrawal symptom of zoloft I was experiencing was painstakingly difficult to deal with. suffice to say, it was a stomach flu with severe stomach pain, nausea, migraines and visuals through the roof that lasted just under three weeks (unfortunately, I do still suffer the abdominal pain from time to time but this is what happened after coming off the drug over a 3 month period). Since this experience, I have made a decision to never be put on SSRIs again because the pain of getting off the drug is just not worth the artificial happiness it gave me.
  21. Hello. Wow this feels weird. I never thought it would come to this but I've finally made an account on this site of which I have been browsing for just under a year. Now I am at the point where I am sharing my personal story to the public. yikes. I think the main reason I created an account on here was not because of the HPPD symptoms in itself (as the more I ignore I think the less obsessive and anxiety is associated with symptoms) but because of the loneliness of dealing with it. I have talked to doctors who have never heard of this and refuse to believe it and brush it off as anxiety prescribing me cocktails of anti-depressants (you know the usual thing that HPPDers go through at first) and family (one of my parents) who thinks that the internet is crazy with lots of wild theories to come up with illnesses, evil people, and nothing good from it. I beg to differ on that matter so we do not see eye to eye. So I've reached out on here looking not for a magic piece of advice from someone but just support and people to talk to that are going through the same things as I. Anyway let's get started as this is a long story in itself. I am 20 years old. When the Hppd started it had been just a month after of turning 19. Before this I was a heavy user of marijuana for about a year and a half. AND Before this I used no drugs nor alcohol. I was bright in school but socializing was never my strong suit. I suffered from OCD (Obsessive Compulsive Disorder) from a very young age (unfortunately I don't know the exact year of diagnosis), an eating disorder at 11-years-old, anxiety, and depression around the same time. From 10-years-old I have almost always been on medication so this idea that some people have a predisposition to HPPD does not seem that far-fetched for a guy like me. The first time I noticed something was definitely wrong (the HPPD symptoms) was after doing a mushroom trip for the second time. I started getting strong after images, visual snow, and I received double vision in the background (whenever I focused on something). I wasn't too worried at the time as I recieved these same alterations in my perception the first time doing mushrooms. Just going to note that the amount was very small and I actually did not feel at all silly or get a "high" from it which was actually really disappointing considering what I have now I would consider a whole change in my mental and visual state. Flash forward to the next day, when out of the blue ironically while doing meditation, my heart starts pounding and the after images get worse. They had actually died down the day I did mushrooms (that is after the effect you could say "wore off"). But now they were very bad. I was getting bad anxiety from the heart beating that I decided to get my heart tested as I felt it was beating really fast. Flash forward about 5 days later when I'm at the hospital getting my pulse checked. It was 90 bpm which is normal. They said its anxiety you should go back on an anti-depressant that you went off 2 weeks ago. Awesome, I was doing so great, went off an anti-depressant, took mushrooms and now I'm even worse off then when I first wanted to go on the medication. So I was really upset and frustrated with the docs and at myself. Before doing the mushroom trip I had researched a lot about what great things it could do for you and helps you face your demons (imo all that BS). Then I came across HPPD before I even got HPPD. boy am I stupid. The person I was doing research from said how rare it was so I made nothing of it thinking this can't happen to me haha. Boy was I was wrong. Over the period of three months (even being abstinent from all drugs and stimulants, i.e. caffeine) the HPPD became worse. The first onset was anxiety, depersonalization, and after images. that was it. looking back I look at how lucky I was but back then I was freaking out and complaining about why I suffered this. then things got worse, I started seeing floaters in the sky one day. flash forward 10 months to now where I see them everywhere (bright screens, bright lights, and literally everywhere I look on a bright sunny day outside). I started seeing tracers and light halos one day 2 months after my initial onset watching TV randomly. It's been a bumpy ride however I have to say that there have been randomly two brief moments in two days out of the entire year where my symptoms were 90% gone and then they returned the next day after I woke up. Weird. After I went on Zoloft I noticed the symptoms less but the derealization, brain fog, and depersonalization came back full blown when I began taking the SSRI. I have also relapsed a total of five times with marijuana during the whole year which made things terrible (yes I'm an idiot). I think I've finally accepted that I can no longer take (or that I must be extremely cautious) drugs anymore. It is just a really bad idea in the long run. I have contemplated suicide a lot as the last time I smoked things were honestly so bad I felt like I was living in hell mentally. I had bad insomnia and suffered gastrointestinal stuff (not going to get into it but it was gross). anyways my neurological system is so messed up from the year of damage I did to my body with drugs. My only hope is to take every day one step at a time going for runs, eating healthy, drinking lots of water, and taking good supplements (lions mane is the only one I've tried but I hope to try magnesium). I am currently off of all drugs including pharmaceutical medications. Things are actually not that great visually for me at the moment. My anxiety is down but still there, the symptoms that frustrate me the most are the damn after images and the floaters that are everywhere when I'm outside. I can honestly say I was way better 2-3 months ago. I feel still even worse then my initial onset. But on the positive side, just a week ago I had a night where it seemed all my visuals vanished. I remember actually feeling the happiest I've been in my life just in the feeling that "whoa, they've all vanished (90% actually)... I actually can't believe it." Then the next day, it was right where it is normally which was unfortunately sad. So I guess my story wasn't too long and I apologize if my writing became gradually worse and worse. I have something to attend to very soon so I'm trying to finish this as fast as I can. Before I go I am curious and just wanted to ask the community what kind of hobbies you guys like to do that helps take your mind off of the HPPD? Mine are video games, writing and exercise. Unfortunately, I don't have many social activities as I am quite socially inept (both naturally and worsened by HPPD) so I am quite recluse when it comes to hobbies. There was a time during my drug and alcohol binge and where I would attend parties and socialize in big group settings but that's no longer an option unfortunately as I can't be in those types of environments with drugs being passed around left right and center. Well, that was it. Hope you all are having a wonderful day.
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