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Everything posted by Onemorestep

  1. I've had muscle fasciculations from aggravating my hppd. It was all over my body (the weirdest were the eyelid twiches and private areas). But i wouldn't describe this as shaking. I know most people have had a random single muscle twitch for a bit (usually in the upper arms or thigh muscles) but this was EVERYWHERE. The way I got it to stop was taking sinemet for a week. Couldn't tell you why it worked but it did!
  2. I don’t think it’s a good idea to encourage people to not see doctors lol Neither way this is a post for people and their doctors.
  3. So about a month ago I found out my family friend met the head of Neurology at columbia presbyterian in NYC at a party; his name is Dr. Fink. He has 75 neurologists working under him and is going to assign two of them to me. I meet with him on Jan 10th so hopefully I'll get some good news. At least I can maybe I can garner some interest in the disorder.
  4. Make sure youre getting all your amino acids. Whey protein is a good source for full spectrum amino acid support.
  5. I find it interesting that lamotrigine makes your visuals worse since the only chemical that completely corrected my visuals was oxiracetam It is my belief that much of the visual issues that coincide with HPPD are due to decreased activity at glutamate receptors. Whether this is due to malfunctioning receptors or previous loss of receptors I can't say... Oxiracetam (and other racetam derivatives except keppra) also screwed me up permanently when I tried to come off it cold turkey. I don't recommend it to people because of this.
  6. You sent me a PM but I like to reply to people in public for others who come searching for the same answer you are looking for. One should treat HPPD as if you have a concussion---don't drink or use drugs while recovering. It will only delay your recovery or possibly make your state permanent. It sucks but your future self will thank you I find full spectrum CBD used in a vape is helpful as an alternative to pot and can help ween oneself off chronic smoking. I can't say whether all ppl with hppd will have this same reaction since everyones etiologies can be so varied but i thought i should put it out there.
  7. Absolutely! Eat healthy, exercise, stop smoking (cigs and drugs) especially early on while your brain kinda "remembers" still what its supposed to go back to. So little is know about this disorder but what we do know is continued drug use almost certainly hampers healing if not worsens the condition.
  8. Wow thats A LOT of LSD.... I recommend slowing down for a bit! I always heard that hallucinogens really shouldnt be taken more than 3 times a year with two months in between dosages. If you study some of the effects they have on the brain, it really seems like its the safest thing to do. If you have HPPD using more will make it worse. It's not that bad now but that can change very fast. I would say It's never a bad idea to go to a doctor. It cant hurt (well as long as its simple diagnostic work and you are not prescribed anything). Never a bad idea to rule out a brain tumor XD. I doubt you'll find anything though.
  9. Valerian root shares a similar mechanism of action with benzodiazepine drugs. Benzodiazepines bind to the gamma subunit while valerian binds to the beta subunit on GABA-A receptors. What difference in effects this causes, Im not entirely sure. However, I believe it should be approached with caution and taken in the same way as a benzo (sparingly and never habitually). Don't delude oneself by thinking tollerance and withdrawal cant occur with this drug because all signs point to yes if you just do some google searches. I find its great for sleep, however it results in a manic state followed by a horrific increase in anxiety a few days later. I should not be used as a good example for whether this is a safe drug however, as I also have other concomitant disorders such as PAWS from gaba agonists and receptor modulators and thus can have withdrawal like symptoms from even short term use.
  10. A pleasure to meet you Annie! Thanks for dropping in--its so nice to see someone willing to take an active role in understanding and helping another with HPPD We don't see a whole lot of people like you coming on and it's quite refreshing. Lets see what would I want my significant other to know... Probably just what you are doing now. Try and empathize with his struggles with it! He really seems to have things under control though. Im glad to hear he is sober as that is a must for almost all with hppd (I guess those with very very light hppd can still enjoy substances but usually nothing heavy and only in moderation). What someone needs when they are in a relationship with HPPD varies greatly from individual to individual. Don't push him to talk about it, but it doesn't hurt to tell him if he ever wants to you'll be there to listen and not judge. I'd definitely want them to know how much stress can inflame this disorder and that its important that they are a positive influence in my life in that regard. This doesn't mean we cant be at odds at time (what couple isnt) but it does mean that I would like to handle disagreements in as mature a fashion as possible as to minimize stress. I know that if I was dating someone with hppd, I would take extra precaution to not stress them out even when I'm mad/hurt/feeling off because I would know I'm actually making them sick when I do inflict stress. Sometimes I get very overwhelmed with the thought that I'm never going to get better or the old me is lost forever. It can be nice to have someone who will listen to such things and tell me they enjoy me for who I am now. Mostly I would just like my significant other to know that the way I experience the world is vastly different than they do. At times it can be very overwhelming and more important than anything is just that they provide support and love as I would them. Being in a healthy relationship can really help a person with HPPD as it provides such a magical sense of safety and mental comfort. If you have any questions about HPPD feel free to PM me
  11. Thats so interesting because the ONE thing that seemed positive from my HPPD (from mushrooms) was my ocd went away. TBH I think I would rather have it back. It wasn't SUPER severe and it actually aided me in being meticulous in art/school.
  12. Really I'm looking to improve my sleep >_< it's at a point now where it's going to shave years off my life if I don't get it in order and it's been two years of poor sleep. It's not gonna get better on its own...
  13. Anyone tried it? I'm curious.
  14. Does anyone know anything about this supplement? It's supposed to inhibit the breakdown of endorphins via enzyme blocking. But is there tolerance? Withdrawal? I can find very little about this stuff but it helps a lot with my sleep and pain issues. I'm just wary of messing with things I don't understand... withdrawal sucks
  15. This might be helpful for you! I do a keto diet as we have PM'd about. Its a strict one but it treats me right. Below is a link to some evidence for a calming action
  16. NAC

    For some reason NAC gives me horrific anxiety attacks. A few other people around the internet report this as well. Low glutamate in certain brain regions may account for this as lowering those levels further has a downstream effect on reducing GABA. No way to tell though >_<
  17. I find this REALLY fascinating since keppra does modulate opiate functioning. "These results show that levetiracetam produced antihyperalgesia which is at least in part mediated by GABAA, opioid, 5-HT and α2-adrenergic receptors, in an inflammatory model of pain." -
  18. Got to let the brain recover. No stimulants (including caffeine). No drugs or alcohol. It sounds awful but so is living a life unfulfilled because youre disabled from this! Have hope. No other choice but to cling to hope
  19. Im using a testing company out in california called IGNEX. They are very reliable. The test came back indeterminate and im supposed to get a follow up but its been hard. I've had hppd for years unfortunately. The test that came back as a maybe for lymes indicated that i contracted it recently. My VS has not changed in about two years.
  20. Anyone have experience with doxycycline? Doctor thinks I have lymes disease. Pretty positive test. Very worried about this... if anyone has input please let me know >_<
  21. We also don't know how briv is different from keppra. Sure it has higher affinity for antagonizing glutamate functioning but does it also have that for the others? The studies done on briv were meant for treating epilepsy so its hard to know.
  22. The thing is we don't know why keppra helps those with HPPD. I know that the glutamate suppression with briv is a lot higher but who knows if thats why it helps. Keppra has a crazy amount of indirect antagonism on receptors. Off the top of my head dopamine, serotonin, opiate, acetylcholine, and glutamate receptors are all influenced.
  23. yea its p much trash haha. but ive never heard of it hurting
  24. It purportedly doesn't cross the blood brain barrier. But you got gaba receptors all over your body. Could calm the cns. Raises testosterone apparently too. I've tried it a few times with good effects but can't remove placebo so idk. 99 percent sure it won't hurt but always be cautious.
  25. The majority of my hppd came on after a wonderful trip! No problems with ego death at all. Some lsd analogue idk what it was xD. Had a beautiful time up in the mountains of Virginia. So eh who the hell knows