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Hallucinogen Persisting Perception Disorder (HPPD) Support Forum

Lallo

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Lallo last won the day on April 13 2017

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  1. Originally, I thought of making a long thread describing my symptoms, backstory and all that. I also thought a lot that I couldn't post this thread before having been on Keppra for at least half a year, so that I could have more experience of being on this medicine. However, right now I just want this to get out there. I want everyone here to have this information cause I know I wish I'd had it over a year ago. In short: I got HPPD from an 100ug LSD trip over 1.5 year ago. This was probably my 4th actual trip and it was great. No bad experience or anxiety. It was a magical moment. I also did some days of microdosing the months prior to this trip but I'm sure at least 4 months had past since the last time I took a dosage higher than 20ug. 2-3 days later I noticed that everything felt like a dream. My conclusion was that this was something related to stress, as I had a lot to do in school over the whole year and especially at the time. I didn't research to much about it since I had just gone on a vacation and thought that my mind just needed some rest. One month later, I went to an event and took one pill of MDMA. After this, life became a living hell. I had to try to cope with HPPD symptom while managing university studies at one of the most challenging schools in my country. Somehow, I've survived 1.5 year so far but the times that I've thought about suicide have been plenty to say the least. This all coming from a person with great social life, no prior health problems, great fitness and good grades. Just to let you all know. I've been working out 5 days a week, eating healthier than anyone I know, taking supplements and vitamins, doing meditation, reducing stress and all that jazz people are talking about and recommending. I've previously tried Lamictal, which didn't reduce the symptoms more than placebo and I stopped taking it after 2 months. I had heard about Keppra, but somewhere in my mind I felt that "If I just follow these other recommendations and give it all time, it will disappear. Or at least reduce to such a small amount that I wont notice it". However 1.5 year later I went on a vacation again and the symptoms went full on like I had gotten HPPD just days earlier. Suicidal thoughts were sky high and I just thought that I need to do or try anything at this stage to save my life. I had come in contact with a neurologist regarding visual snow (not HPPD). He was the only medical contact I knew that took the condition seriously and actually had given Keppra and Lamictal to other patients (with different results). I told him about the trip and gave him my full story. This was something I hadn't really told other doctors I had met before since taking drugs is not only illegal but very looked down upon where I live and I knew that the doctors haven't even heard about a condition such as HPPD and would instead just take me for a fool or drug addict. (Actually called a psychiatrist who told me to go to the city centre for people with addict problems... yeah you understand how ignorant people are since I calmly told her that I barely ever used drugs, maybe a few times in my life, which was the truth). Anyway, I have now been on Keppra for over a 1.5 month and it has been a lifesaver. Is my HPPD 100% gone? No. But my symptoms are greatly reduced and I can finally live a pretty normal life again without everyday being like going through hell. Some of my visuals are still very present. Visual snow reduced maybe 10-20% and I have some mild afterimages and just warping of stuff sometimes. But my floaters, derealisation and depersonalisation has been greatly reduced. I almost feel normal again as I was before the start of HPPD. I know people of these forums love numbers so I would say that the dp/dr has been reduced by 80-90% and my anxiety has also been greatly reduced together with this. I know that I've only been on this medication for a while but the changes I've experienced cannot be placebo and it has made life much easier to live again. I know realised that this post became pretty long to be honest but I didn't really have the feeling to go through all my symptoms and describing everything in detail etc. I just want to recommend Keppra to all you HPPD sufferers out there! It might not work for everyone, but anything is worth trying. I'm right now on a dose of 500mg in the morning and 250mg in the evening. For a while I tried taking 500mg both morning and evening but my side effects went up a bit to much and I felt like it was more important for me to get the benefits of Keppra during the day than evening / night. After all, this schedule of taking this medicine is just copied after people with seizures and it is important for them to keep a steady state of the drug during the whole day to prevent seizures. Remember that you start of Keppra with taking only 250mg x 2 daily for about 2 weeks (your doctor SHOULD know this if you find anyone who will prescribe it to you) and you might experience side effects like becoming very drowsy and tired at first. I started Keppra this summer when I didn't have to go to school but I found myself sleeping during the day and being pretty tired when I was awake the first 1-2 weeks. This also happened again when I increased the dosage to my current dose at 500mg + 250mg. I try to avoid searching about HPPD on the internet and therefore I won't be answering to much in this thread or any PM that anyone will send me. I just feel that trying to take my mind away from HPPD is the best thing you can do and that's what I'm trying. But most of what I know is in this post in one way or another, even if it's a summary. If I know myself I will probably stumble upon this post again somewhere in the future and then I will try to answer any question as good as I possibly can. Go out there, find a neurologist and try Keppra if you have not yet done it. I told my neurologist it was to cope with visual snow and maybe you could try the same if there is no doctor that will understand HPPD. I do not live in the US or UK so I cannot recommend a doctor there. Good luck to you all!
  2. Hi!! I did not write that post but it inspired me to try Keppra. I started out just a few days ago. Right now I'm on 250mg morning and evening which will be increased to 500mg morning and evening after 2 weeks. All I can say right now is that I'm feeling really tired and a bit weird (more than usual) from the medicine. However I know that medicine like this takes a few weeks to get used to and I will try it out for at least a total om 1 month if I don't get any other serious side effects. I also heard that the drowsiness is suppose to be reduced after taking it for a while. Had Hppd for 1.5 year now and it just got worse after traveling abroad for 2 weeks, which was why I called my neurologist and asked him to prescribe this for me. Feels kind of shitty when things practically reset after 1.5 years of trying to get better huh? I can update here on how it all went in a couple of months.
  3. Yeah it got better on 50mg then I continued with 100mg (as told my doctor) and I thought the symptoms would decrease even more. However I got worse dp/dr and then I went back to 50mg. And since I went back I haven't feelt as good on 50mg as I did in the beginning. I might try Keppra but I think I have to give myself a break with at least 2-4 weeks of any meds before. And I don't think I will try anything new until vacation.
  4. To keep it short: HPPD for 15 months. Drug free, eating and working out. Overall a lot of stress since I'm in medical school. I have now tried Lamotrigine for about 1.5 month. You're suppose to go 2 weeks on 25mg, 2 weeks on 50mg and then continue on on 100mg (which is lowest effective dose). When I got to 50mg I feelt like my dp/dr symptoms were reduced and I looked forward to starting 100mg since I thought it would be "even better". Sadly, 100mg got me feeling weird and after 1 week I went back to 50mg after consulting with my neurologist. Now, 50mg feel better, but I still feel a lot of anxiety. I dont know if it's because finals are coming up but I feel almost as bad as I did ONE YEAR ago. Now I'm not really sure that to do. Continue on 50mg, try to increase to 100mg again? Or stop medication totally? My neurologist also said we can try Keppra or even a newer version called "Brivaracetam". Any advice?
  5. Lallo

    Can it come back?

    Since we don't know the pathophysiology of HPPD it's not sure if it can come back or not. I would not recommend going back to whatever drug gave u HPPD if u got it and now symptom free. It's like playing with fire.
  6. Thank u for your response Jay1. This was also my original plan, to atleast wait 1 year Before trying any meds. by the looks of it, I will probably do it if my condition doesn't get much worse over a long period of time. I can feel that the recovery is not a straight line , but a continous wave up and down. I once had my best day, almost feeling completely back to normal, just the day after having a total breakdown cause the symptoms were taking over. Good vibes to you and everyone else!
  7. To keep it simple. I'm looking for a doctor in europé who understands and has treated HPPD patients Before. I have no problem to travel to meet someone, as long as he speaks English. I'm tired of not getting taken seriously by doctors in my own country. Positive vibes to you all! P.S. Over the past 8 months I have slowly been getting better. Do you Think I should try any meds at all or try to get better all by "myself" ? Already following all the "Lifestyle" stuff like taking no drugs, eating healhty, exercising, meditation etc.
  8. Lallo

    I've been symptom free for a week.

    Hello! I've red your old post about your recovery! How are you feeling today? Any advice to me? I've had HPPD symptoms since 8 months but they are getting a lot better. Eating healthy, working out 6 times a week, meditation etc. I've Always lived a very healthy Lifestyle. Glad that you made it!
  9. Lallo

    Good news! For the Dutch, at least.

    I know this topic is old but I would like to see if you ever got in Contact with this doctor and if amy medication was given to you and has it helped you? I'm living not far from the netherlands and I would gladly travel to meet a doctor that is familiar with this condition and can offer help. I've had HPPD symptoms for about 8 months and it's getting a lot better. However I'm hoping that maybe medication could give me a boost in the recovery process.
  10. Thank you for the response! I will probably go at least a year before trying out meds then. I had anxiety and still have but it has gotten better. It's worse when the visual and dp symptoms arise. My workouts have been helping me a lot and I will ofc continue with stuff that make me feel better. I'm trying to cut out on all the stress I can but I'm in university and studying really hard so obviously it's been hard to stay on track with this happening. Thank you for your responses and sending the best and most positive vibes back at you guys!
  11. Any advice regarding this or my symptoms or any positive feedback is highly appreciated. But please no negative vibes. I've stayed away from this and other forums because mostly it's full of negativity
  12. Hello everyone! I'm gonna try to make my story pretty short: I used LSD in the beginning of december while I was traveling. I have used it about 4 times before with maybe 5-6 months in between. I did get hppd symptoms a couple of days after the trip but since I was flying to much I thought this was just jetlag or something so I ignored it. However in january the symptoms got worse and I was back home so I figured out something was not right. I have just came back home from a party with mdma and I guess that was not really good for me at the time. (Generally I'm not a regular drug user of any kind and I never ever drink alcohol or use tobacco). Anyway. I have not used any drugs, not even caffeine since january and even tho some of the symptoms have gotten a bit betten they are still there. My question is: Should I search for medication right now, Keppra or anything. Or should I wait another 6 months to see if my symptoms go away? I'm still hoping for everything to turn back to normal and I've seen stories where people actually recover 100% within a year. I've been to the doctor but obviously I didnt want to say that I've been doing drugs, so all they did was to send me to a magnetic scan of my head. (I dont know about usa but where I live, people have a BAD view at any drugs except alcohol and tobacco and all healthcare is "connected" which means all future doctors will see that I've been doing drugs. They also assume that u are some kind of drug addict. Which I'm not, I'm a hard working student who works out 6 days a week, and I'm eating super healthy and sleeping 8-9 hours/night) And PLEASE! No negative "oh u will have this for 25+ years" posts etc. I dont feel like that information, realistic or not, is giving me any positive energy to fight this problem right now. Anyway. I've seen that Keppra has helped a lot of people. I'm not really to interested in benzo since it looks like it just reliefs symptoms temporary and sooner or later u need a higher dose.
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