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Hallucinogen Persisting Perception Disorder (HPPD) Support Forum

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  1. Today
  2. Jay1

    Medication Pins?

    If someone with a good insight into the medical side of hppd wants to write a post about medications, I will happily pin it. As it is, most of the posts are just personal accounts about it and don't really seem pin worthy. If you know of a specific post that you think is pin worthy, please post a link and I will take a look. If I get some time in the week, i might try to put together a post about the pros and cons of all the usual medications
  3. @billy feel free to post back here with new developments and how things are going, know you’re not an island with this condition. 😊
  4. Yesterday
  5. Hey guys, Just wanted to report on what my experience with dosing with both Abilify and Levetiracetam (Keppra) has been like for me. I know most people have had bad experiences with Abilify. What I began noticing back when I was in the hospital, was that after they started me on keppra, the antipsychotics I would take (primarily Seroquel or Olanzapine at the time) would no longer cause adverse reactions to my hppd. They began having what I felt like was their intended effect - sedation. This was strange to me because for example, every time I took Seroquel prior to being on keppra, it would cause an exacerbation in my visual symptoms. With all of that being said; im one of the unlucky ones with HPPD, who upon getting HPPD developed a psychotic concurrent disorder somewhat on par with schizzoaffective disorder. Because I had HPPD I wasnt able to effectively use any antipsychotics to quell these symptoms. So then I remembered that after being on keppra, I was able to dabble with antipsychotics. So I figured I'd talk to my doctor about trying out Abilify. (Aripiprazole) The first 3 days, it made me feel really good and calm, then for the next two weeks it kind of made my HPPD a little but worse. I figured I'd try it out for at least a month before making a final decision. Anyways, that whole hypothesis about keppra enabling the use of antipsychotics proved true for me with Abilify as well. It's been about a month, and basically what happened was that the visual symptoms of HPPD basically got worse for a little while, but then returned to baseline after about two weeks. This is great for me, because IMO Abilify is one of the best antipsychotics out there. What's great is after my hppd returned to baseline, I've been able to keep the antipsychotic properties that Abilify has to offer - which so far is working really well for my psychotic/schizzoaffective symptoms. Just thought I'd post this little blurb, as maybe this could prove useful to those out there who suffer from *just a little bit more than hppd* TL;DR - keppra has allowed me to use Abilify effectively without causing my hppd to become worse, and has been helping my schizzoaffective symptoms while the keppra helps my hppd along side it. 😊
  6. jbalsa2

    oxycodone and hppd?

    Visuals become saturated, but not necessarily worse. Wouldn't recommend going overboard, as withdrawals or rebound effects make hppd worse.
  7. Im wondering on your experience with oxycodone and hppd specifically your visuals.
  8. MrCipher

    oxycodone and hppd?

    Im wondering on your experience with oxycodone and hppd specifically your visuals.
  9. I can't believe people do that... How you guys dam could drink industrial bleach?... My hppd is almost 99.99% gone and I didn't that thing... That's dangerous!! Take care with put that into you body... That's scam.
  10. i havent read the above but will just add a note before i go out then reply properly later. I have noticed that my brain feels lighter, and also my legs are much lighter feeling. I do not notice any effect from food any more. I dnever had hallergies but would feel groggy or whatever after certain foods. This is much reduced. Also i do not get hangovers any more. I looked up whether food intolerance can be created by chronic infection and h pylori came up. I then also looked up any bacteria that metabolise alcohol, and h pylori came up again. My provisional hypothesis is thus that i had a bit of h pylori overgrowth that has been obliterated by chlorine dioxide.
  11. Last week
  12. Honestly my family doctor was willing to prescribe it to me, try your doctor, if not, you can google “Keppra evidencias curativas” and the first result that comes up is a good resource to show a psychiatrist, neurologist etc.
  13. @jbalsa2 Thanks for the advice, It makes me hopeful. I was wondering how you were able to find a doctor to prescribe this sort of thing. I feel since it is off label most doctors would be against it.
  14. @billy if DP/DR are your worst symptom, I would consider speaking to a doctor about giving levetiracetam a try, it's the best for reducing symptoms of DP/DR. You said your visuals are already mild, levetiracetam will also aid in the visuals department a little bit. Don't expect absolute miracles, but an improvement is what I noticed after about a week on the med. Start with 250 mg twice daily and see how you feel.
  15. @jbalsa2 I've been dealing with the symptoms for almost two months. DPDR is definitely my worst symptom by far. I also have a pretty extreme amount of floaters, and some mild visual snow. I have periods when I feel normal, (especially when its dark and I can hardly notice the visual stuff), but when It's bright and I see the floaters floating around each time I move my eyes, and the glimmering of the VS on the sky I lose myself. I've become like reclusive only staying inside cause I can't handle lights. This is what people usually notice.
  16. jbalsa2

    Medication Pins?

    @Jay1 or any other admins? Could any of you guys shed some light on this?
  17. @billy in curious to know how long you've been dealing with your symptoms; from what you've been saying in your post, keppra (levetiracetam) might be a good option to help you with your symptoms. There's a good chance i'tl reduce some of your depersonalization and derealization symptoms and help you focus on reality a little bit easier. 😊
  18. I developed this condition long before the internet existed. The only people I talked to about it were the people I used to dose with. None of them had symptoms like me. I figured I was the only one in the world with visuals etc. A few years back I decided to see if there was anyone out on the WWW who had this condition. When I found this site it was a huge relief! I though I was alone. Now I finally realize that I'm not alone. As for the deep breathing exercises. My doctor sent me to meditation classes at a local hospital. I stuck with it and for me it has helped. It's basically mental focus and if you stick with it, it's possible these exercises will help you as well. Like learning a musical instrument, you have to practice. Many of my symptoms have gone away or are greatly reduced. It took time, but then again, my dosing history was a bit extreme.
  19. There's us, here. For me I think what wound up being a rewarding feeling for me was learning how to cope with the symptoms and make the best of it. Especially if you're still succeeding at school, use that as a little internal Pat on the back; your pulling double time compared to others. How long have you had your HPPD? For what it's worth, with time, your visuals will get better. I've had this condition for 2 and a half years, and my visuals rarely bother anymore. Whereas in the first year, my visuals were painfully abarent.
  20. Hi guys, I'm struggling really bad with this shit. I can't deal with being outside when it's bright out, and anytime i move my eyes I feel like shit is moving in my vision. It's really affecting me and people are starting to notice I'm different. My parents especially notice that something is up. They can tell I'm avoiding things and that I'm scared. I told them It's just anxiety, and they keep expecting it to just go away. I keep thinking I should tell them what is really going on. I think they would be supportive, if a little angry, but I'm afraid that it would destroy them to think that I might be like this permanently. I can just imagine them crying as soon as I leave, and I don't want them to suffer for my sake. I just don't know what to do or who to talk to. I am talking to the counselor at my college, but all she keeps telling me is to do these deep breathing exercise which will only calm me down until I open my eyes again and start seeing things all wrong. Have you guys told parents/ other people/found someone to confide in?
  21. stupidk

    am i developing hppd?

    I’m really noticing halos around lights now. My symptoms remain the same but I guess I’m noticing them more? Visual snow in dark rooms, eye floaters in certain lighting, slight afterimages if I look for them, I noticed last night when I moved my eyes up or down while driving the car light trailed with my eyes for a second while I moved them, if someone takes a picture the flash light stays in my eyes for a while... will this get any better... no drugs coming up on 4 months. Barley drink but I still drink the tiniest bit.. wtf I just want my life back.
  22. jbalsa2

    Medication Pins?

    This is more so aimed at some of the mods on here, I found that a couple of years ago when I first got HPPD, i was more so finding information on levetiracetam and lamotrigine on google or other sources, such as the NCBI case study. Why are the lamotrigine and levetiracetam threads not pinned in the medications section? I think these two resources should be bright, visible, and easily accessible on this forum, especially when the medications subsection of the forum can be so vague and convoluted sometimes with various experimental medications, that most first timers would typically want to stay clear from.
  23. Although I can’t comment on lamotrigine specifically - because it caused me to have severe reactions to the medication (Muscle movement disorder and such) I’ve never been able to take it. That being said it took me a solid month to month and a half on keppra to begin to feel it. What i’ve Read the most about lamotrigine is that most people who take it and notice improvement notice that improvement over a period of months, not weeks. Stick with it, I think lamictal is mild enough that unless it’s causing severe agitation of symptoms, it typically won’t be non-reversible. My symptoms got better over like two weeks, and they were unbearable.
  24. Hey guys, just a quick question for any of you concerning how lamotrigine effected your HPPD. How long did it take for positive effects to present themselves? Did you experience any worsening of your symptoms when you first began your medication? What dosage are you currently on? I am personally on week two of my lamotrigine, and I've observed some worsening of my symptoms ,especially my afterimages. Thanks!
  25. People link floaters with hppd because, at onset, they are constantly monitoring their visual field and start to notice the natural things too. I had floaters since about the age of five. If they are problematic, you can get surgery that blasts them (they come back after a few years) Glad the flashing has stopped for you
  26. Jay1

    UK HPPD Documentary

    I've had a few video chats with them... Nice guys and I think it will be a very good, balanced program. If my anxieties allow, i'll possibly be doing part of the documentary. But if you are in the London area and would like to participate, then drop them an email
  27. This medication costs $28000 per year. Just a heads up. Good luck getting any form of financial funding unless you've been specifically diagnosed with psychosis due to Parkinson's.
  28. jbalsa2

    Blank Stare

    For what it’s worth, there’s more to this then just a thought; your eyes work idiosyncronously (Is that the right word?) with your brain. Being at psychiatric hospitals and seeing people on various different types of neuroleptics; you can see it in their eyes. There’s almost a blankness, like they’d be looking right into your eyes and a part of their gaze was missing. Maybe I have the same effect; as i’m on abilify. That being said to John, it subsides in time substantially. I’ve been substance free for quite a while now and my eyes and general demeanour is as bright as ever. Focus on living a healthy lifestyle, and paying less attention to your eyes (staring inwards, as it were) and you’ll begin to improve without you noticing.
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