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I'm so scared, any advice?

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Some of you may have read my posts here over the year, but here it is (long text)


• I got severe type 2 HPPD february -21 from cannabis and was bedridden for about 8 weeks. Ironically i turned to it in hope of being able to self medicate insomnia.

• Went to the psych ER after all scans and tests had been done and i found out on the web what i had gotten. I got prescribed Lamotrigine, which only after 5-6 days started to decrease the dpdr/dissociation, head pressure, brainfog/impaired cognition, vivid dreams, feeling of having cotton in my head, well, all the non visual symptoms. At 100 mg they were all gone, except ~20% of my DR and tinnitus. It also eliminated the regular pseudohallucinations, tunnel vision and improved and stabilized all the other visuals with like 10% (vs, halos, ghosting, palinopsia etc. So they never fluctuated.

• I became functional again and finished my studies that i had to pause when i got it, then i started working 75%. But the remaining visuals and trauma of it all gave me a depression. So about 10 months in at 100 mg i tiltered it up to 150 mg to see if that would decrease them, but it didn't, so i gave it one last shot and upped it to 200 mg, but with no improvement.

• Months went by and i gradually accepted them and my depression got better, so i saw a light in the end of the tunnel so to speak and i had gotten back to my old daily routines.

• after 2 years on it i gradually started to feel some of the old symptoms, one day it could be the brainfog and having difficulties to even find words and putting sentences togeter, another the head pressure, and over just a few weeks it went real fast downhill, so my body had built up a tolerance. My doc told me to up it to 300 mg, but that did jack shit, so once again my life fell in to ruins, and the timing was horrible. Because as this was happening, me and my better half since 6½ years together we're moving apart (not breaking up), just getting our own places, since my depression had taken it's toll on pur relationship, so we wanted to give eachother a little space, since my depression affected how she felt as well. We also had a trip booked for a week to get away from everything, which we booked prior to deciding to move apart.

• To be able to take this and not end up hospitalized, i in desperation got some Clonazepam from from the black market, and 1.5 mg of that eradicated all the non visual symptoms and even improved my bfep and tracers by ~30% and calmed my static down a little bit, and we made the trip and it did miracles for our relationship, it's like we we're newly in love again, and seeing how great the kpin worked and after reading alot of stories were it has worked for 10+ years with a daily use fof some, i got extremely hopeful. The thread/study about it being able to mlre or less cure it also gave me hope (turned out to be type 1 patients in it though...)

• After about 4 weeks on it i got diplopia/ghosting as a side effect from it, i already had it, but this worsened it by like 40%. Sadly it's a potential side effect from most psychiatric drugs, but seeing how it kept everything else in check, i could accept that.

• After about 6-7 weeks i felt the old symptoms slowly crawling back up on me again, so my piss body had started to build a tolerance here as well.

• My doc/psychiatrist called a neurologist and they decided that they want to perform an EEG test on me, but to be able to do that they will have to cut my meds and hospitalize me for two weeks in the near future, since both Lamo and Clona will interfere with the results. Because of the risk of going CT of a benzo they will have me under close supervision. From what i've gathered they want to do this for a potential case report, but probably also out of curiosity, but when it's done they will immediately put me back on Clona and then slowly wean of it. I've only been on it for 10 weeks so far, so hopefully the withdrawals won't be to brutal and long lasting.

So not only will i have to endure the withdrawals from these meds, my HPPD will come back in full force, and i'm so scared that Keppra, which probably will be the next med that they will try, won't work, because then my life is over and there's not much else to try.

There really is nothing in this world that can make me want to live with the grade of HPPD that i have unmedicated, i could barely take care of my hygiene prior to Lamo or even eat, not watch TV because of the tracers, afterimages and ghosting, barely read on my phone, drive etc, and that to me is no life worth living, add the dpdr on this.

So i'm as it says in the title scared shitless, my entire life hangs in the balance of a medicine being able to decrease my symptoms, and that my body builds up a tolerance to meds like how the bullets bounce of the terminator doesn't make it better.

It's ironic how some weed can cause something so devestating and life ruining. The things i would do to be free of this, or i would settle with the affect that Lamotrigin had, then i could live a decent life with my better half. But unmedicated i won't be able to uphold our relationship, it would drag her down too much, so in would've had to break it off, and when i check out, it will traumatize her alot, even if we break up before it, same with my other close ones.

But i'm certain that if they could've lived just one week in my body with this unmedicated, they would've understod why i want to chose that road, and maybe even have been able to accept it to spare me the suffering, just how you put a sick dog down, and afterall, we all die some day and around 70 000 people do it daily, it's as natural as living, not that i really want to, but it beats the alternative.

Also, since 2009 i've been on the poision Celexa (20 mg a day), which i suspect increased the chances of getting this, since THC also binds to the 5HT2-a receptor, so there could've been a drug > drug interaction, but who knows, i've talked to plenty that got it from weed. But when i found out that antidepressants in rare cases can cause this, i started to slowly wean off it, and since march -21 to december -22 i went from 20 to 5, the first 12 mg were pretty easy, but after that the withdrawals became a nightmare, even with a reduction as low as 0.5 mg, i actually believe that they were up st the same level as the ones some get from benzo withdrawals, so after going from 5 to 4.5 i couldn't handle it after a few weeks and backed up to 5 mg, were i've been since. But i really have to get of this poison as well, since i'm certain that it worsens most peoples HPPD. So i'm in a real rough spot, i have three meda that i have to come off, were i believe the SSRI will be the worst, and all my hope lies in that Keppra can help me.

Sorry for the long vent, but i wonder what you guys would've done in my situation (except the suicide part)? Maybe the smartest thing is to get rid of Lamotrigine first, since it's dead weight. I've already dropped it down to 200 mg. Then maybe do a CT of the last 5 mg of SSRI, beause since i get so severe withdrawals from doing it slow, it feels like i maybe just drag out the suffering and try to endure steonger withdrawals, but that hopefully only lasts for a few months. And when this is done, start weaning of the benzo and introduce the Keppra once the HPPD symptoms starts to become too much?

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  • 4 weeks later...
6 hours ago, AF44 said:

I wonder if your weed was laced with something.

Nope, it was homegrown. I've come in contact with quite a few that got it from weed alone, and it's established in the litterature. THC rich strains can actually cause psychedelic experiences. Also, i barely got any high when i smoked it, just a few puffs to help me sleep.

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  • 2 weeks later...

I cant do anything for you man, but i know that the headpressure thing can absolutely get better. I think you have it much more severe than me, but after 9 months it’s totally gone. The brainfog too. Started to get better after 3-4 months, then times with flareups and then it slowly faded away. 

I know, its much longer for you. But for months i thought that my brain is permanently damaged. It wasn’t.

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  • 1 month later...
  • 1 month later...

Drug-drug interaction is particularly interesting to me. When I got the HPPD, I was on Ciproflaxin (an antibiotic for a UTI.) It is a HORRIBLE antibiotic and in my opinion should be taken off the market. There are so many horror stories from people who have taken Cipro just by itself. I wonder if the Cipro combined with the LSD caused my severe HPPD? I just remember my trip starting out completely INSANE and I was like wtf.

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