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Showing content with the highest reputation on 04/30/2012 in all areas

  1. I am going to keep this as brief and to the point as possible. I have had this disorder for 18 years. I have tried at least forty medications and I had very limited success in treating it with Clonidine and Klonopin. However, the "progress" I had with these medications was a bit like throwing a blanket over a fire siren; they muffled the noise but, the siren was still blaring. The medications I am currently taking cut off the sound to the siren and I know you HPPDers understand that distinction. About 5 months ago I began Keppra. This medication can make you very drowsy and Keppra rage is very real. I kept the dose low, quartering a 200 mg tablet, so just 50 mg. If I upped the dose the side effects would become too great, so I just maintained the levels without any side effects. Slowly, day by day and week by week, I noticed real progress in the way I was feeling but, more importantly in the way I was thinking (I will say more on that at the end). If I had to quantify, I would say low dose Keppra reduced my symptoms between 40-60% on its own. After about 4 months my reduction of symptoms inspired me enough to believe that this may not be impossible to pharmaceutically treat, despite past failures with antidepressants, antipsychotics, mood stabilizers, beta blockers, benzos and other atypical meds such as, Sinemet, unfortunately. I began to think about the fact that LSD after ingested begins by agonizing the 5-HT2a receptor, which then agonizes NMDA receptors, which is thought to largely account for the perceptional changes. Then the path gets murky, but I wondered if in the case of HPPD excitotoxicity occurred at some point (NMDA receptor overload) which works by overloading calcium channels. 5-HT2a------->NMDA---------->excitotoxicity (calcium ions) I wondered if somehow in the case of HPPD if this cycle was still going on and if trying to block it at one of those receptors might help. I began with a 5-HT2a antagonist, Pizotifen and it had no effect. I then moved on to an NMDA antagonist, Namenda, which helped a little to calm me down, but ultimately did not move the needle. Then I read Ghormeh's post on this web site about visual symptoms being reduced by a calcium channel blocker called flunarizine and gave it go. It didn't take long at all to get a drastic improvement with this. My typical days now consist of a 70-95% reduction of symptoms. There are many times during the day when I feel completely normal for long periods of time. My generalized anxiety is almost entirely gone, my thinking is abundantly more linear and the visuals have improved (especially light trails in the dark, less so visual snow, but still received some decent benefits in this department). I believe the meds are working synergistically. Keppra, among others things, suppresses activity in the amygalda, which is the primary fear center of the brain and a speculated source of PTSD. Flunarizine prevents excitotoxicity and has been shown repeatedly to block the effects of MDMA in the lab. It is a logical pairing. But regardless of how it works, it is working and working very well. I ran an experiment on the flunarizine which tells me that is without question directly helping my HPPD. For the last 18 years if I were to wake up in the middle of the night and move something like my cell phone or alarm clock in the dark I would get a light trail. I noticed that they had stopped when I began the flunarizine. I went into a dark room and spun around my powered on cell and there were no trails. Two days later I stopped the flunarize and ran the test again 48 hours later and the trails came back. I haven't felt this good since before "the incident". On the change in thought patterns I mentioned early; I believe HPPD is a perceptional and thought filtering problem. These medications allowed me to restore thought filters (and a good deal of the perceptional ones related to how you perceive the feeling in and of your body). My mind is segmented again, instead of jumbled. There are thought patterns I know to follow in everyday life and thought patterns I know to avoid. Before when HPPD was in control of my life I could hypothetically understand this, but I couldn't apply it. Now I can apply it very easily. I hope this information helps. On Keppra, there are a few posts on this forum that state that you need to get up to 1500 mg in order for it to work and a few people advocating against a set dose and for whatever you body calls for. Obviously I would like to strongly echo the latter sentiments. For those of you that tried Keppra and couldn't handle it due to the side effects I would suggest you may want to try it again at a low dose. I am a very strong believer that if something works for one of us, it will work to a good degree for all of us because there must be biochemical uniformity to this problem. On flunarizine, I take 1mg at night. This is a strong medication so if you try it ease in with the lowest dose possible. I have been on this pair now for a few months. I wanted to make sure my reduction of symptoms remained before I posted. They have been getting better. Things aren't perfect always, but I have regained the vast majority of my former self. Do you remember how you use to feel during a spring day walking around outside or flopping down on your back in the grass and looking up at the sky? Being able to process the sensations of the cool air and the heat of the sun and the moving trees in the wind all at once and then getting that feeling of being a part of everything around you? It gave me that back. I had to work at it though. The medications seemed to help me in part by allowing me to help myself to put my thoughts back together in an orderly fashion. Below I have made a list of what has improved and how much: Generalized Anxiety-85% improved Paranoia-90% improved The feeling of feeling that you are one with your body-80% improved Trails-100% improved Visual Snow-20% improved Linear Thinking- 85% improvement
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  2. Hey so two months ago i decided to sober up completly. I used to drink and do Ex everyonce and a while (i did it more in highschool). and everything was fine the first three weeks,but then i got a panic attack and overall my anxiety levels were extremely high. Then i noticed some of the weird little visuals like little speckles on the walls when its dark., silver little dots in the sky during the day, halos over lights, after images, weird moving things on walls, and the more i noticed these things the more i started to freak out. It got to the point where i was obbsessing overy every little thing, was constantly anxious, and was convinced that i was developing schizophrenia. Lately the visuals have gotten even worse. The worst part of the day is during the day because i have so much anxiety now and by the time its night time im so tired from all the mental exhaustion that i dont even care about the visuals but honestly its a living hell. Now im even feeling like im in a dream and everything feels so weird. Its hard to hold a conversation with someone, its hard to focus, its pretty much hard to do anything because i just feel like my brain is so foggy. Every damn day feels like a battle to just get to the end of the day. I even saw a psychiatrist and all they did was give me zolaft. I dont know if i wanna take it tho, im just afraid of the side affects. But yeah i guess thats my story. Im only 19 and life is already an ongoing battle. But yeah any tips would be greatly appreciated.
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  3. Im with jay on that. Great its healed but u might just have hidden it. I like to think doing it without meds I have an accurate day to day idea of progress.
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  4. This is exciting. I am very happy for you. Flunarizine should only be used for 6 months I believe, and then stopped, and only continued if your symptoms come back. How long had you been on it when you stopped to see how long it would take for your trails to come back? It would be fantastic if flunarizine actually cured the trails, but obviously HPPD is different from its standard use (migraine/migraine aura). Do you plan to stop at some point or continue indefinitely? You seem to have a large improvement from low doses as well which is really positive. The recommended dose for flunarizine is 10mg per day, so that you are getting benefit from just a tenth of that is awesome. 50mg of Keppra is ridiculously low as well. Have you tried B6 / B-complex supplementation to reduce the side effects of Keppra? How long have you been on these two medications? Do you feel that you are getting more improvement as time goes by? Do you have any other symptoms? E.g. ghosting, starbursting, halos, etc. You mention some of the mechanisms behind why you think these medications are working so well together. Can you provide some sources/studies for these? They would be very useful for understanding, and also for members who might want to try and convince their doctors to let them try these meds.
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  5. Mine don't seem to be affected during sports but afterwards for a short time they're worse, then usually once I get out the shower I feel a lot better.
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  6. Hello community, I was lurking this forum for a few month now and finally decided to sign up and tell you my story, i think it could be interessting, and i would like to hear your opinions. First the obligatory sorry for my englisch, iam from germany Afew years ago i used to experiment with alot of drugs for maybe four years.(if you want to know which i can tell you later but the list is long ). three years ago i stopped every drug except of pot. i was a heavy pot smoker for a decade and first stopped after my symptoms started(6 month ago). i used to smoke seven or eight joints per day. my first symptoms occured after my first salviatrip the normal breathin or floating wall shit never was concernd of it. this never diminished in the last three years, i thought it was the pot which let me trip. at summer last year cant say exactly a new symptom occurred corners of white walls beginn to vibrate. Again i thought must be the pot and not bothering at all. in august last year i went to bed very high and got panick while falling asleep. it was alittle bit like sleepapnoe or feeling the REMsleep commin dunno. this was happening two times and only in august. after awekening of the panik dont think i really slept at this time i saw phosphens/static and the second time the purkinje's tree. again i thought must be the weed. a few minutes later i finally fall asleep. then in the end of septemper i got a pneumonia. went to the doc and he prescriped me antibiotics. didnt stop smoking pot but used a vaporizer because of the cough. after a few days the pneumonia was gone and on the next monday i went to a excursion of my education (dont know if this is the right word ). I had to take the antibiotics till tuesday and had a couple of beers and pot on monday and tuesday. then on thursday we was at a "dinner in the dark" dont know if you knew this: its when you sit in completly dark and eat, fuck this . Since my drug experience i cant see completly dark colors were every where floating in the room. i was very high while this dinner and got panik because of feeling like a blind person. As the lights go on again every thing was grainy for maybe 10minutes. After this we went back to the hostel and i drank alot liquor. After this night we drove back home and i only slept 3 hours. At home i smoked another split and went to bed at noon after awekening in the afternoon there was the snow a week later i went to my doc to run blood tests and so normal crap everything was ok. then i went to the ophthalmologist again everthing was fine. she said could be related to my scoliosis went to my orthopaedist he says "could be dont know". so i decided to ask dr. google: and find some people with this visual desturbances an spine problems but sounded more like quaks thinking everything is related to spine problems. so i googled more an found visual snow and Migraine/HPPD. Never had problems with migraines and no one in my family has migraine. so i think it must be HPPD after my very long and excessive drug history. The only thing i cant get is why this delay or this worsening in the last year. I had alot of stress and iam in my mid twentys maybe corelated dunno. Maybe the antibiotics bring it up..... So enough bad english for the beginning my symptoms are: visual snow/static afterimages negatives/only a few positiv(mostly of light sources like headlights) trails halos and starbursts around lights and halos around bright things infront of dark background movement of carpet pattern ghosting mostly in the left eye an worse while squinting lightsensitive this started shortly after my 20th lsd trip i think floaters (was able to see them as child but got alittle worse) some micropsia/macropsia only at the beginning 6 month ago maybe afew more but dont know atm. Also i got a few crazy flashbacks 4 times in this 6 month, where everything is breathing and melting. After stopping weed 5 month ago and going to gym 4 times a week the most symptoms improves alot over time the movement is mostly gone static and afterimages has also improved but are still there when looking for them. maybe they will disappear in a few month to years. But this is not so bad comparable to what had happend to me because of my drug history. take care and greetings from germany.
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  7. Hi, my onset was 2 months ago. Ive done 2cp once and it was a bad trip. Besides that m1 and e1 for about a year off and on. Also messed up my penis that night but that is another story. Anyway, I have a mild version. main symptoms are snow, after images, starbursts, halos. All visual. I've learned to live with it.it is the least of my worries. I'm coming here for advice because my friends and doctor want to put me on an anti depressant. I said hell no at first because I'm trying to be healthy and recover from the hppd. She wants to put me on prestiq an snri. I have the prescription but am definitely having second thoughts. Anyone taken this in combo with their hppd? Im anxious that it will make it worse. No one believes me when I say it could make it worse. They just assume I have crazy levels of anxiety. But I've read anecdotal evidence that suggests ADs can make it worse. On the other hand, I am feeling suicidal and need to try something because my current course isn't looking good. What should I try to get her to prescribe me? PS klonazepam is out of the pic with this doc because she said it won't help with the depression
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  8. Thanks for the input. Yeah I read a lot of good things about Lexapro. I haven't made a decision yet. Gunna talk to my best friend one more time. But I'm leaning toward listening to myself and just staying completely sober and work on being healthy. I think that will be better for me and give me the best chance of possibly beating HPPD. I have a mild version and really didn't do a ton of drugs. So, I'm hoping I'm one of those cases that have a full recovery after a few months (only been 2 so far).
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  9. It is an SNRI (different from an SSRI like Zoloft) for treating General Anxiety, Major Depression and others. Unlike an SSRI (zoloft/paxil) it increases your Norepinephrine (stress hormone) levels as well as your dopamine.
    1 point
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