Granite

Good luck, 50s.. Keep us posted I was worried when you didn't update on the Keppra trial.

Interesting I also have terrible issues with Quercetin. I found something interesting in a search I'm going to post back tomorrow. Update: Haven't forgot about this just busy this week. I need to locate the stuff I found and put it together for a post.

Answer the poll please, and let us know if your parents took antidepressants while you were in the womb or before you were born.

Guyindubai, it's really irritating to read your posts. If Gman is telling you he's having side effects from Keppra, perhaps you should back off and respect that. You're pushing him into dangerous terrority where he's having psychotic thoughts and recommending that he keeps going. I don't know what your thinking. Gman, stop dude. Stop.

My take on this is its related to muscle tension. This is and has been a huge problem for me since the beginning. I discovered this through seeing a chiropractor, when I was complaining of joint pain and constant joint cracking, we found my joints were healthy and not the problem. My tendons however were extremely tight. I theorize it's related to changes in the connective tissue. I also get a lot of chest tightness I used to think was heart-related pain, and thankfully I was wrong. The balance issues could be explained by the tension in these tissues putting pressure on the inner ear and surrounding areas. The tension hits any and all parts of my body from my head/neck down to my feet. I also had the same problem with alcohol and had to quit. 2 beers was a terrible hangover for days.

Interesting... Before I really understood what I was dealing with, I was prescribed finasteride (Propecia) for hair loss. Unexpectedly, I started feeling improvement in all my symptoms of fatigue, mood and pain. Then I noticed my vision was clearing up also. Within about 4-5 weeks I was about 100% removed from all symptoms. However, because of side effects I had to stop taking it after a year and I started feeling all those symptoms come back. I could never make the full connection as to why Finasteride helped me so much, but I do know it's main job is to stop the conversion of testosterone into DHT (dehydrotestosterone). Thought you might find that interesting.

Anything can happen. I know you want to hear experience that gives you confirmation that it can, but this is really subjective and different for everyone. I also have afterimages (palinopsia) like you. You might find more information searching the web for palinopsia; there 2 are main variants -- illusory and hallucinatory. If you're afterimages are getting worse, you need to take a hard look at everything you're putting into your system. Start with food (maybe a diary) and see if anything you eat is making it worse. Also, caffeine is a trigger for my HPPD and that had to go. Cigarettes, drugs, stimulants.... get the axe...

Me too.. My friends think I'm crazy when I tell them it triggers me, but whatever they just don't understand what we go through. I don't even know where to begin with my story. I developed a disabling form of HPPD, much worse than what I started with 16 years ago. It landed me on disability, unable to work, or do anything. It's also connected to some kind of skin issue, and created serious gastrointestinal problems for me that put me on the strictest of strictest diets for almost 6 years. Visual problems started with just visual snow, but then I got illusory palinopsia (which is where you see afterimages of everything) and that's much worse. As bad as all that sounds, I managed to heal almost entirely from it all. The process has been painstakingly slow, but mental cognition has improved tremendously, the visuals are very light and almost gone entirely, my stomach problems are healing and my overall energy and happiness has improved. But, it took 6 years of total avoidance of alcohol and all drugs, as well as rare caffeine and any foods that made things worse for me. I'm pretty sure my form of HPPD is very rare to take that long to heal, but I really had no choice...if I was going to heal it was going to take complete abstinence, or I was going to die.

Peanuttiest, Sorry to hear about that. I've experienced the same discomfort. The only thing we really have is patience. Unfortunately, most people who develop this issue just don't have enough patience (makes sense a lot of us are addicts), and continue to worsen the problem when trying to heal. After 6 years of dealing with a severe form of HPPD, I can tell you it will most likely get better, but you need to avoid all things that trigger it -- completely. I did read about a guy who developed HPPD and never touched weed again for 10 years, and when he finally he did, he was OK. So, there's no telling what could happen, but realistically speaking in order to completely heal from this, people have to move on from the idea that drugs need to be apart of their lives or they're fucked. And I personally believe all this trying to balance the brain out with this supplement or medication is not good either...how else can the body get back to it's natural homeostasis. Just hang in there, I'm sure your effects will pass soon.

I was fortunate enough to meet a wonderful Geneticist who offered to run a test called Whole Exome Sequencing. Basically I had a very important part of my genome tested entirely to look for mutations. Nothing from the test definitively pointed to a mutation being a part of my symptoms or HPPD, but one interesting thing that did show up was a defect in the FLNA gene. Why the defect is so interesting is because out of the companies entire database over 15,000, I'm the only one who has the mutation. They suggested it could be related to a break-down in a specific protein and may the be the cause of my chronic intestinal inflammation. It's a neural disorder that causes the inflammation because there's no actual evidence of a blockage. The esophageal tissue and my skin tissue use the same protein so they could be related...and who knows, maybe ocular tissue? Either way, I thought I'd throw this out there as a idea for those looking for a potential cause. Because I know no one personally who has HPPD or anyone who has had whole exome sequencing done, I cannot say whether or not this gene is related to the cause of the disease or makes some susceptible to developing it. But you may want to ask your doctor to find a test that can look for mutations in the FLNA gene and see if you have it also. P.S. The protein is called Filamin A for anyone who's interested in doing their own research. P.P.S. Added details about the mutation. DNA Change: c.1964G>A Position: g.153592952 Protein Change: p.ARG655HIS dbSNIPrsID: N/A OMIM: 300048 Inheritance: XL Zygosity: Hemi Classification: VUS

Jay, your experience is much akin to mine. I was also 16 when I developed HPPD, and when I drank the first couple years it was like a silver bullet. Until the age of 18, then I start having other problems related to anxiety, digestion, skin, and cognition and I noticed alcohol was making these problems worse. Interesting about GABA. I've tried to take GABA directly as a supplement and it causes anxiety.

Trip, You're passionate about it, I get that...but you know how different these problems are for everyone. When I was 16, I started getting hives...the first thing I tried was antihistamines -- Benadryl, Zyrtec and Allegra. Imagine my shock when I woke up the next morning after taking these antihistamines covered up to my neck in larger welts and hives...then I go to a friends house and have a couple beers the next night after it had calmed down, and my hives vanish. What would you do? Believe me, I've tried A LOT of things... Nothing worked. The bigger question might not by what to use, but what in fact alcohol is doing that is helping to calm the symptoms. It must be blocking certain receptors or ion channels...

256, What's really interesting about your post to me, is that alcohol helped me A LOT in the beginning as well. I first developed urticaria (hives) as my premier symptom with the visual and auditory changes I was experiencing, and I noticed as soon as I started drinking, the hives would go away. I felt much better and happier also. I've been trying to find a way to explain this, but haven't been successful. In any account, I say drink a little if it helps. But, for me, it stopped helping after a while and started to make things worse so be careful how much you drink.

Agree with jay. None the less, I'm happy for you if you were able to improve...Congrats! Do update us with your progress every week or so and let us know if it has continued to improve or if it was temporary. I would definitely not do MDMA again for a while and see what happens without it.

Some people need to back off. Even if you don't find his experience helpful to you, at least he's offering to share his story. Someone...somewhere...will find his posts informative. We need everyone to contribute as much as possible, don't we?

Hi Mr. 50's, Interesting trial you're doing...thanks for posting your progress. I agree with you, it's most likely the Keppra. Not because I've experimented with Keppra first hand, but I've tried many supplements that produced weird side effects days later exactly as you're describing. You probably want to back off Keppra entirely until your symptoms subside so you can reevaluate your trial and perhaps try again at a lower dose to confirm your response. You can feel comfort knowing that the thoughts and depression you're experiencing is all a side effect of your trial and will disappear as your body readjusts while off that supplement. It will definitely pass just keep that in mind, but you should get off Keppra in my opinion.

I know you're trying to help. But, telling someone who has a VERY REAL problem that they just need to stop worrying and all will improve is nonsense. Not only that, you're dangerously suggesting he continue taking a supplement that could very well be the reason his problem is getting worse, just because others have had success with it. That's not good advice. I've also read of people suggesting Lion's Mane is making their HPPD worse...I'm sure you understand drugs react differently to everyone. So, come off this "destructive thinking" nonsense. I'm helping the guy actually root out the potential cause while you're suggesting he float on a cloud. EDIT: I want to add my thoughts on anxiety. Everyone knows dwelling on something heightens the feelings or experience, that's granted, but anxiety as a cause of problems is WAY overblown in the mainstream medical community. Anxiety itself is not the cause of anything. It's a symptom of the problem. People have this twisted because they think, Oh I have anxiety right now, so this is causing my other experiences to be worse. No, anxiety causes you to FEEL these discomforts greater, but if you're experiencing anxiety in the first place, that's because your neurotransmitters are not doing there job and you're out of whack.

youwhat, ahhh... to be young and have a mild case of HPPD. You must be living in the glory days with that advice. I hope you never experience what it's like to have what mycall81 or I live with. Meditation is a pipe dream when you get to this stage. Understand, we're talking about the disruption of neurotransmitters here. Visual problems is just one small aspect of this, it wreaks havoc on your entire system when full blown. Anyway, mycall81, I personally would just stop. But, I know it's considered nootropic, so you might want to consult someone else.

My guess is the Lion's mane made this worse.

Are you still taking Lion's Mane? My understanding is this is a potent supplement that can effect Choline transmission. I personally know that Choline is involved in my disorder, because I was lucky enough to develop Cholinergic Urticaria at the beginning of my problems. That could most certainly be what is causing your visuals to progress; I even believe I bumped into a post recently about a person who was wondering if Lion's Mane was making their HPPD worse. Maybe it was you?

I'm sorry to hear about your struggles, I feel for you. Been a long time sufferer myself. I want to suggest you look at everything that you're using right now. Even things you might not think could affect you, like caffeine and cigarettes. Even your diet could be playing a role in this (foods high in fat or salt are a problem for me). You might have to buckle down and do some elimination to see if you can root out anything that could be making it worse. Also try cut out masturbation or sex for a few days and see if that has any effect. The idea is to minimize the amount of stress your body is dealing with and see if you can begin to balance yourself. This means you might have to be an angel for a while. Wishing you good luck.

Hi Guys, looking for some brain chemistry knowledge here pertaining to my HPPD and what's causing the problem to continue. I wrote a detailed post describing my first triggering moment which you can find here (http://hppdonline.com/index.php?/topic/4106-bad-ecstasy-experience-terrible-damage/) Since then, I've realized how important a role sex and orgasm is to my problem. One thing I realized was that I actually had sex just BEFORE taking the pill. And, now I'm wondering, was the flood of neurochemicals already in circulation responsible for the hyper-reaction I had on it? In other words, because I had just provoked a flood of chemicals in my brain (i.e. dopamine) by having sex, did I punish my receptors by adding the pill in right after? What could this have done to the receptors? What's really stunning, is now I can see how when I have an orgasm through masturbation or sex, I have a worsening of my symptoms for days following. The provoked reaction is 20x worse if I have TWO orgasms in the same day. So I now limit myself to no more than one orgasm a day and now go more days in between cause I feel much better. Also, I've tried a couple of supplements that are initially a HUGE help to me. They are Bilberry, Dandelion Root and Wobenzyme. I can feel instant relief from these supplements in almost all areas of my symptoms (except for visual distortions), but everything else is wonderful. However, after a day off the supplements, my prior symptoms of muscle tightness, fatigue, shooting pains, mood swings, paleness, etc... come back 10x worse than they were before I take the supplement As you can see, that means I can't continue to take them. However, I'm wondering now if the major flare-up reaction I'm having to these supplements is caused by having an orgasm WHILE I'm on them. So, I'm thinking that the supplement is doing something to my nervous system, perhaps blocking a certain receptor or something, and I have an orgasm, causing an extra flood of some kind of chemical thats getting backed up in my brain and when the supplement wheres off, I have a ton of chemicals floating around in hyper-mode.. Or something like this, can you see where I'm trying to go with this? I know there is some connection with Cortisol. Because, I took Finasteride (Propecia the hair loss drug) and had full resolution of my symptoms, but do to side effects I had to stop. And, I learned that blocking 5-a reductase is a way of curbing cortisol. I've also read of others who have something called POIS (Post Orgasmic Illness Syndrome). But, no one mentions visual snow and palinopsia like me. I'm unique in that my palinopsia is getting better and is actually a direct measure of how bad my other symptoms are. So, as that improves, I feel better. But, I've been battling a 6 year flare-up caused by what I now believe is having multiple orgasms in one day while using opiates and Flonase. It might sound strange to think Flonase could cause me issues, but its action works on the a-adrenergic receptors, and this causes some kind of response to my nervous system that it does not like at all. OK, can anyone maybe throw in some thoughts about the orgasm and brain chemicals, and perhaps how all of this is effecting my neurotransmitters. Maybe what I can do to curb this? Just want to mention again that Ecstasy and weed were the main culprits in starting all this, so I'm sure the dopaminergic/serotonin system is playing some role in this.

I'm interested in Study 5. I had an exome sequencing test done that showed a defect in the FLNA gene. The result showed uncertain significance because I'm the only one in their entire database that has it, and they suspect it could relate to: X-linked periventricular heterotopia (PVNH) or the bigger one X-linked recessive neuronal intestinal pseudoobstruction. The latter being more interesting to me, obviously because I'm suffering with a nervous system disorder. I also have diagnosed intestinal obstruction without evidence of a blockage. In regards to HPPD, with the myriad of symptoms I have, the most pertinent would be Illusory Palipnopsia (afterimages/trails/snow/ghosting), So, is this an area of interest to Dr. Abraham?

Curious, anyone know of experiences where having sex (specifically having an orgasm) triggered symptoms for HPPD or any other nervous system disorder? I've heard rumors it's a bad idea to have sex on E. Please share any thoughts!

Don't want to burst your bubble, as a former daily cannabis chiefer...but there's a good likelyhood that will also worsen your HPPD. If you feel any anxiety or chest tightness when you smoke, I would back off. I started having HPPD at 16. I'm 31 now, and I cannot smoke weed.