Merkan

I cannot even drink a a glas of wine/beer. Count yourselves lucky Didnt like alcohol before HPPD but now when i am olderi feel the stigma in social situations. Man my neuro system must be f*cked

Nice one, for us that do not have HPPD in our DSM (depending on country), this is really helpful when confronting the docs

The reason why I am a bit confusednis that b6 made my symptoms worse. I read later on that it affects serotonin. But a good idea is probably to donwhat syntheso says. I'll start with B12 and i am all about mega dosing

Just wanna pitch in that by all the drugs that should work for HPPD, GABAp is the only one that made my symptoms worse...and quiet a bit

Since i respond well to...everything as much as i get bad reaktions from anything, i might wanna check out some Vitamine B. A lot of people here hade some success but there are many types, b5 b6 and b12 seem to be the ones i read about. Which one is most benificial for HPPD in theory and what are your experiences with different B-vitamines? I somehow got the idea that B12 is the one but dont know.

Perhaps moderation is the key? I am gonna give it another try by not pushing it with deadlifts and squats. But i think its a good thing to keep your body active.

Great response Visual. I recall that was one of my first symptoms, not being in the presence when i got my first, mild, HPPD. Keppra sorta fixed that but maybe over the top on the dose i am on now. Same Clonazepam dose as you wrote but the Keppra dose is still the same, i was thinking about trying to step down to 1000mg but right now i suffer from symptoms from food poisoning. So i'll wait til i get back on track completely, like in a couple of weeks i guess. From what i have read from you and you symptoms and responsiveness to certain treatment, i believe we have a very similar HPPD-profile.

Something i noticed for sure is that i am sorta zoned in to what i am doing. Its great for being productive but i have some issues with focusing my attention to people around. I need to stand and tal to a person directly, that works well. Other things is i do not appreciate music as i used to. I believe this could be the Keppra. Any ideas about that? I am on 1500mg now and would lower it to 1000mg. Crap this is hard, what is normal and what isnt? Dont remember pre HPPD

I am bit scared about that memory loss thing with clonazepam. Ive been on it for some years now and i do not know if its the clonazepam or my worsened HPPD that caused my memory loss. Or even Keppra since it effects my feelings and feelings generate memories. When i am good and symptom free, my memory seems to be intact but if i get sick and get some symptoms and/or have sleep deprivation and symptoms return i do get memory loss. But i think its mostly long term, like someone asks me what i did two months ago i have a hard time to find that place but when i gett better, it comes back to me. Would be nice to test this, anyone know any memory test online? Edit: Actually, I have my best memories when i sn starting to get better, like 90% from a bad episode. The ketonic diet boosted my meds like crazy. I might just try to lower the Keppra a bit since its much easier to get back on the dose i was on then Clonazepam. Interesting thing is that I get sooo much better during the summer, despite taking a lot if Vitamine D during winter.

I did my first 45 min at the gym today for the first time in 2 years. I did what i used to do, heavy lifting and my body as weight. After i felt great but i noticed that i got a lot of symptoms that i do not have anymore due to meds like vs and glares, trails etc. The reason could be that i had a severe food poisoning in the middle East a week ago which made me more vulnureble. I really liked going to the gym, being around people and the work out Itself. I will take this week to Evaluate but i would like to ask the community how you experience a hit at the gym/track. Needless to sak, i got a major boost in energy but not sure if its worth a couple of days of worsened symptoms. Any idea why this is happening?

Anyone even considering using any kind of CB should read David a kozins story and his 2nd onset and then think again.

Watch out for the BS kind. I only know that citrate and lactate are great but some kinds thats being sold isnt absorbed. 500mg is a good dose btw. Remember that your stomache need to adjust in the beginning. Good to have a toilet nearby. Goes away in a couple of days Mg is one of the few sups that really work for me, my experience with otc sups is go big or go home when it comes to the dose. Of course you shouldnt take toxic doses, google might help you with that.

Thanks visual. I also read about a theory that it has to do with l-dopa somehow altering the blood brain barrier but there is no evidence supporting that clam. You are only on 100mg, right? I really need 200, wish i could go on 150. Perhaps if move to a better climate. This darkness and indoors thing isnt working for me.

Btw. I know all about on/off symptoms etc. But i only wanna know if these risks apply to us (me)

I've been on 200 mg for a couple of years now. From what i have heard there is something that can cause unwanted movements due to the medication in Parkinson patients. I wonder know if this is something that non-Parkinsons sufferers (HPPD-patients that is) can get? "Visual" is someone who knows a lot about this but i have been bothering him enough. Does anyone knows if this could happen? All i read in my native language is that too much dopa during too long time will cause this but not why. Anyone with knowledge about it or can give me some facts from the amazing internet?

Wow, antibiotics. It would kill me if i had something like that. I cannot handle anything like cortisones and AB. If i get a chronic disease i rather cut that part of the body out if possible. Glad that you can co-på with it. I can relate with adapting.

I do not visit the board as frequent as i used to. I was doing mild opis when i had mild HPPD and wanted to try Kratom. It was the biggest mistake in my life, bigger then aquiring HPPD in the first place. It went full blown and i was put in to the Psych ward for weeks. Without my coctail of meds i would be non-existing. Its permanent and no sign. of clearing up 4years later. I actually remember more from the period of mild HPPD which was about 1 1/2 years then the last 4 years of kratom induced severe HPPD. Sometimes i get panic attacks just by looking at myself in the mirror recognizingci got old.

I take 400mg of mg citrate each night. Made a huge difference. My vision is more focused and i would say it clears up stuff. Wont drop this anytime soon.

Fact that adding dopamine makes my visuals better, seems like an 5-HT antagonist/inverse-whatever is interesting. However, i think one should be careful when it comes to depression of using such agents.

I highly doubt that sinemet can get you Parkinson's. A quick google of the most searched term at the topic "can sinemet cause parkinson's", gives no such hits. All i know is too high doses can get you side effects similar to PD but goes away when dropping the dose. Anyway, the dose is so low it would be unlikely due to the fact that this dose is prescribed for life for RLS, that is a not so severe disease. My doc says however that i could get used to the dose but that is probably because she prescribes it in PD where the illness progress. Test the sinemet and then the Lamictal and think about what is more important: looking back when you are old and there MIGHT be a fix for HPPD and you lost your best years waiting for it. Or, if the sinemet works, taking it now and get a great deal of your life back together while waiting for a cure that MIGHT come in the future, and that you MIGHT have a potential risk to develope PD in the future, which has not been proven AFAIK. Your choice, i did mine.

^ Just wanna add that i took a lot of codeine and sleeping pills (even when awake) just to shut off the brain before i got Clonazepam. You do however wanna stick to the 0.5:s even if you are taking a daily dose. Up the dose slow and lower it slow. By taking 0.5 you can finetune the dose, of course with your docs approval., to where it does its best. For instance i started at 1.5 mg which was too little and then went on 3mg but that was too much. So i ended up on 2.25 which seem to be optimal without overdoing it.

Since my HPPD is so intense its almost seizure like, i need 2,25 mg/day. Its all about how severe your HPPD is. What severe means is subjective though. If you use benzo to get over the anx i wouldnt recommend it unless you already tried CBT or meditation etc. For me its like i am constantly bombarded with visual snow and my brain cannot keep up, projecting images of what i am thinking and other weird stuff. I tried 70(!) mg of diazepam when i was at the hospital, did nothing for me because i do not have anxiety. 1mg of Clonazepam kicked the symptom away instantly, making my brain function again. So, for anx try not too, but Clonazepam has the effect that other benzos do not, even when you get used to it and the sedative effect goes away. If you have problems with your symptoms causing issues with cognition, that is a reason to go on Clonazepam. Its the lesser evil.

Now i really feel a bit frustrated for what we lost on the old board. Man, i think it was three boards where this was discussed in depht. Anyway, it is what it is. As far as SSRI goes, i took it when i had mild HPPD and it definitely made my symptoms way worse from where i was. Really intense light sensitivity, glares and trails. Those three symptoms i remember clearly. Do not remember what SSRI it whas but it wasnt SNRI.

Sorry, i was doing a line of K when i read this, am I doing something wrong or right? (Irony, yes, but simplify for the liberal arts guy here.

This is the general idea about the mechanism behind HPPD, yes. But wouldnt it be simple just try an antagonist in, let say, five people? We would know instantly if this is the way. It should have a profound effect on HPPD if the theory that everything starts with 5-HTP2A and is the cause of most of the symptoms. As dr A said, the most probably way to find a cure is for people on this board trying new meds, backed by different theories about the cause of HPPD to give some credit in what to try. So, i believe the progress in search of a cure or symptom relief is up to ourselves. Thats why it so important to post about what we try and why in the pharm section. Imo, we need more Guinea pigs. There is too much talk and to little trials.