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Do I have hppd? Is there more connection between hppd and seizures? My story and questions


Derealized
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Hello everyone, in advance I wanna apologize for my non mother tounge English and for not really coming to an end with telling my story and maybe using the wrong tread for that post.
I‘m not quite sure yet if a self diagnose with HPPD is appropriate for me but I want to tell you about  my story, my seizure-similar experiences and my worries about taking meds. 
 

i don’t really know when all of this started.
I‘m 24 now and I’ve been smoking weed regularly since 2015/2016, never had any noticeable problems with consuming it but could always keep it on a kind of moderate level, smoked everyday but usually at night time and never had problems having breaks inbetween for weeks.

 August 2019 I went to Indonesia/Gili Islands and „of course“ I had to try one of there mushroomshakes there, Even though I never had drug experiences besides 3 times of mdma and the weed. However, the first mushroom trip was quite pleasing nothing as how I experienced it and the dose was very low as I wanted it to be so I nearly had any hallucinations, my mind felt very clear and I did feel kind of creative. That good and light experience might have taken the my „respect“ of this drug so on that same holiday 2 weeks later I drank another mushroom shake, at night, in my hotel were the atmosphere wasn’t that nice, furthermore my friend I wanted to take it with didn’t notice anything and the dosage was a bit to high for me I guess. I wouldn’t call it having a bad trip, but all of the circumstances kind of freaked me out and I really had to calm myself down throughout the trip. Anyways when I came back to Germany, my home country I ordered some mushrooms from the Netherlands, because I wanted to microdose them, for „selfhealing“ my selfdiagnosed depression that I was to scared to go to a doctor with. In December 2019 I started microdosing for nearly three month, I didn’t feel so much of the positive effects promised but I didn’t stopped smoking while doing it which might me the reason for that, sometimes the day after taking it a felt kinda dizzy and I had that thing called mouches volantes I guess, that seemed like little flys/black dots infront of my eyes, next day I didn’t have anything. Sometimes when I took the dosage in the morning and smoked werd afterwards I got really sensitive to noises which also kind of made me aggressive or I felt like I had to leave the situation. However, all of that stopped when I stopped with the microdosing. At that point I want to say that I hadn’t felt really depressed ever since, anyways I feel like I kind of changed ever since, which I haven’t really noticed as a Problem till a few month ago, that’s why I don’t know if i‘n actually having the HPPD or what it’s caused from. in the past year is started getting more annoyed of people or not really „getting“ their way of living life, I started feeling anxious about talking infront of others and felt Kindle confused when I had too, but it was just in front of my class (i’m studying health science - how ironic I know) and I started isolating myself more, but just felt that I wasn’t as dependent on others as I used too. Then suddenly I started hating the smell and taste of weed, I didn’t like the “relaxing” effects it gave me because I just felt unsatisfied with myself and not good, summer2020 I went on a vacation with my family and didn’t smoke fore 2 month, everything was fine, don’t think I ever felt that good and stable during a vacation in a long period of time. However when I came back to the city I’m studying in and to my circle of friends who is smoking weed excessively I started smoking again too, with the differences that I felt that weed didn’t have any effect on me anymore, I couldn’t smell it, didn’t really taste it, it didn’t make me tired anymore, there was still a slight change but I don’t really know what made me continue smoking, I also noticed that it got kind of Heard- for me to not smoke for a few days because it made me feel really weird, I thought I couldn’t focus as much anymore and I thought I needed it to write on my assignments, I don’t really know. I felt kind of anxious at some points when I was smoking and had those weird episodes which makes me think there might be more connection to seizures. 
 
in the past 6 month it had happened that when I smoked time seemed to pass on “double-time” like really really fast and voices of YouTube videos sounded quite weird, sometimes when was reading it felt like it takes me less then 3 seconds to read through a pages and sometimes I could hear my heartbeat really really loud and thought it was really fast but when was measuring it everything was fine. I found this forum where people are describing similar situation but there is not a clear diagnose to it yet, some people are talking about DEREALISATION but some people are also diagnosed with SEIZURES due to those episodes were there was also found proof for it in brain storms. I can’t find an English tread where it’s described but if you type in everything feels loud and fast into google you can find treads liked to derealisation but also to partial epilepsy. 

on New Years I took mdma and it was kind of weird because I needed nearly double the dose of my flatmate even though I didn’t consume it for 3 years in advance, everything felt fine and I felt happy as I always do on mdma. Next day was fine too, but that’s when I started questioning myself more and more, especially because I felt like nothing really had any effect on my mind or my body, like I was non existent. With that I’m talking about the not getting stoned anymore, being able to take very high mdma doses and just stopping to smoke cigarettes without really caring or feeling any withdrawal about it after smoking around twenty cigs for the past 8 years. I got really worried about myself even though I felt good in general, but somehow too good, like nothing really bothered me or could get close to me without the feeling of being depressed.

the experience I made that made me stop smoking weed and being scared of ever wanting to take any kind of drug ever in my life again, also made me go to a psychologist since it made me really panic. I started blaming the weird effect of the weed on me, that I couldn’t taste or really smell it on the weed because I know there was going some bad Chinese chemical  cannabidoids around close to the town I’m studying in, anyways when I went to my hometown I brought some of it because I somehow got really used to smoking weed and with that I mean a lot of weed, even though I never had a tolerance with it before or anything I started rolling blunts without feeling anything the weeks in advance. Since I was kind of unsure about the weed after I heard about the chemical Chinese thing I rolled a joint and just put a little tiny amount of it in the joint, when I hitted it first I already felt anxious about it, after 4-5 hits I had to stop smoking because everything started feeling very weird for me again, I tried to do some anxiety meditation and while I was sitting on my Yogamatt my whole body started shaking even though I felt relaxed, the speakers voice got so loud even I lowered my laptops tone to the lowest and everything started speeding up, my environment started looking weird as I everything was drawn (now I know that that’s how it looks when you are derealized) but it was just so much worse then my worst state of derealisation, but somehow feeling calm meanwhile.
 

However, that’s when I told myself I need to stop, I already had made an appointment at the psychiatrist before that situation but there were still a few days to go which where really horrific. 
 

I posted about those “fast and loud” situations on an neurological Facebook page where people told me about their kids having experienced the exact same and then were diagnosed with epilepsy. 
 

now to the current situation: 

I got really really anxious about what could be wrong with me, I thought I just got schizophrenia or really bad psychosis, but it was just a really bad state of derealisation and an extrem depersonalize where I couldn’t feel myself anymore and felt like someone else was talking and people started looking differently and so on and I felt tense and sweaty 24/7. The psychologist I’m still seeing weekly ever since diagnosed me with an anxiety disorder, depression and derealisation symptoms caused by a childhood trauma (my dad was killed when I was at the age of two). She prescribed seroquel/quetiapin at the lowest dose of 25mg, mainly because she thinks it heals for the derealisation which is kept up by anxiety and to relax my mind again. I took it at night before going to sleep, my bad derealisation and depersonalization actually went away and I felt really really good even though it’s a very low dose, anyways, I’m not really feeling fine with taking meds which made me anxious about the seroquel and check on google all of the time as if it was my main problem now. When reading the first “bad” experiences I started thinking about it in a more negative way even though it still made me feel as good and motivated as I haven’t felt in YEARS, which also freaked me out because I wasn’t used to feeling that good. My psychologist wants to give me the control over the medicating and leaves it up to me if I’m taking it or not, if I stop taking it every now and then to control how I’m feeling without it and so on. 
right now and don’t really know what to do. I took the seroquel for 1 month now, last week I stopped taking it because I got scared of all the negative side effects I was reading about on the internet. After not taking it I didn’t have any sleeping problems, anyways I don’t feel that motivated anymore and I’m struggling keeping active as much as I did in the Seroquel. I notice those visual effects as “heatwaves”, sometimes a dot infront of my eyes when I’m reading and a thing that I can only describe as seeing the “molecules” in the air but I had those things the past year every now and then without giving them to much value. 
 

now that I’m reading about the HPPD which might be my actual problem I don’t really know what to do anymore. 
I’m scared that taking the Seroquel will disturb my self healing process if HPPD or make it last even though it might have vanished in its own after a few more month on the other hand I feel better with the Seroquel but with all the posts about Seroquel not being good for HPPD it gets me worries that I might worsen the situation or as I already said, make it stay even though it might have been gone in it’s own after a few more month. 
I don’t want to try out other things but since the LAMOTRIGIN is used for epilepsy and epilepsy might show the same symptoms of the derealisation I had that I now think came from the HPPD rather then from child trauma I somehow think there could be more connection between it and I should try it out but also with that I’m scared that it makes the HPPD manifest and that it will have even worse negative side effects then the low dose of Quetiapin I’m taking. I’m reading that best thing is not taking anything which I feel too but on the other hand I felt so much better with the Seroquel and now that I’m not using it my brain fog and my unmotivatedness and my anxiety makes me feel worse and tired and I actually need to function. 

I don’t really know what answers or inputs I’m hoping to get from this post of myself I just felt like I need to share everything that’s going through my mind even though it might be kind of confusing. I don’t really feel supported with those thoughts by my psychologist because as I mentioned she’s leaving it up to me if I take it or not. But I just don’t know. I can’t and I don’t want to talk to her about thinking that I have HPPD because I’m scared that she doesn’t know how to treat it and neither does anyone else around where I come from. 
 

Edited by Derealized
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Hello Friend, 

I'm sorry to hear about your struggles.  I will preface this with saying that I am not a doctor.  I tell everyone I encounter on this forum the same thing to help them recover:

  • Stop all drugs (even alcohol for a bit if you can) 
  • Get as much sleep as you can 
  • Exercise regularly even if it makes your symptoms worse
  • Eat well 
  • Stay busy with work/ school/ hobby etc
  • Try not to worry 
  • Learn to meditate if you can (this was really helpful for me) 
  • If you're open to it, start praying to God (it doesn't have to be any particular religion just ask for help on your knees everyday.  I really believe it will come if we reach out)

I think in your situation it makes sense to just give it time and see what happens.  One thing I am sure of is that weed usually worsens symptoms of HPPD (if you in fact have it).  So maybe just take a break from the pot for a few months and see if you feel better. 

Another thing, try not to obsess over the situation this will only create anxiety which usually makes things worse.  The internet can be an incredible resource but it can also be a rabbit hole and can drive a person crazy.  Just trust that the body and mind are incredibly resilient machines and if put in the right conditions can overcome tremendous adversity; I know this from experience.  

Hang in there and stay positive and keep reaching out. 

Take Care,

Nick 

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Hi Anna!

 

im sorry to hear you are suffering so much :( I’m a bit short on time but to answer your post question: there is indeed a link between HPPD and seizure that is gaining credibility. Here is a post explaining why

 

you can show this to your psychiatrist and it may help you get a prescription for this if you want. There are likely 100’s of different specific subtypes of hppd as it relates to treating it with chemicals, so while Keppra is always a good shot for those who are desperate, it doesn’t work for everyone. 
 

Other than that—live your best healthiest life. Nothing else matter but stress reduction and healthy lifestyle. Until more concrete science comes out about treatment we’re all just guessing. Listen to your body. Your life is not over. This too shall pass :) 

 

best,

oms

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Thanks for sharing. I’m gonna try it with the Seroquel for one more month, since I feel the derealisation symptoms that are bothering me most, are getting better on it, even on a small dose of 25mg. After that month I wanna try it without by just looking after my vitamin intake and maybe supplementing some stuff since I’m not really eating animal products. Wann a try that out for at least one month, if things are getting worse i wanna try something like lamotrigin. Still hoping the HPPD isn’t getting chronic and I’m just one of the cases were it will get less by time. 
best wishes 

Anna

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