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Rae

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  1. I have nothing helpful for you in regards to treatment, but I will share my lifestyle with HPPD (non-drug induced). I have struggled with hallucinations for as long as I can remember - back to around age 5 I think. I never (as far as I know) was near, around, or ingested any drug or hallucinogen. In fact I grew up with a family that avoided any pharmaceutical including Advil and Tylenol. My hallucinations were/are difficult to distinguish from reality. It's like a waking dream. That's how I always described it to. I never knew what it was or why it happened, it just did and when I was a kid (teen) it seemed cool that I could watch distortions of shape and color happen without the use of the drugs my friends always talked about from TV shows. When I watched the shows,, I would say.... "yeah that's cool I've had that happen before" ... They never believed me because they knew I was a straight arrow that didn't do it take anything. The bad part is I can't control when it will happen or how long it will last. It has caused me to have many car accidents. I did evetually learn to recognize the aura and that would let me know to sit down or pull over when driving before it became a full blown trip. I Never knew until just this week (30+ years after my first episode) that it was even called a hallucinogenic trip. I knew it wasn't drug induced, so I just thought it was a kind of sleepwalking state. I referred to it many other ways over the years... I never knew that I was experiencing what people try to experience on shrooms (for example). I when I got to college, I was finally able to see a Dr about it. They went on many paths and anti-depressants and basically made me feel like I was crazy. Often it was blamed as a symptom of my PTSD. But it started earlier than my when my first trauma happened. Along with this I have severe fibromyalgia. Which now I'm believing is a symptom of the same route problem. I stopped going to Dr's because I was afraid to give them the full scoop and I could see that none were helping. I often was told to go to a psychologist, and I did see quite a few. Some said personality disorder, others said massive depressive disorder, and still others were talking a type of seizure activity. About 7 years ago I had a Dr prescribe Medical Marijuana. It was the first time I ever used any kind of non-pharmaceutical medicine for my pain management. I discovered that my pain and episodes lessened - in that I was able to function better mentally and physically and any episodes I had, were becoming easier to distinguish from everyone else's reality (there are still times I'm tricked and have conversations that don't actually happen with the people I think I'm talking to). Recently I discovered that we have actual magic mushrooms growing spontaneously in my yard. I became curious and started researching how they work and what they do. I was considering trying them and wanted to be fully educated first. THAT is when I found a Ted talk on psilocybin. I was stunned to hear the lecturer describe my episodes and then identify them as level of tripping. He explained how the drug affects neurotransmitters and receptors such as serotonin. I thought back to all the SSRI drugs that the Dr's prescribed over the years. And I thought about what I have learned about Marijuana over the past 7 years of daily use (by prescription). I realized that something must wrong with my neurotransmitters , and all paths were trying to supplement for that issue. So I started taking St. John's Wart and Sam-e otc supplements to see what would happen. They seemed to help, but I'm still new on them. Just yesterday I tried one of the srooms from my yard. I checked the dosage by weight so I wouldn't accidently over do it. I took only a microdose for my size. And the effect was highly unexpected. Not only did I have no "trip like" reaction, it seemed to have the opposite effect from the lecture I watched. My pain was down to a 4/10 (down from 7/10), my energy was that of a normal person (where I usually passout from exhaustion every 4-6 hours), my ability to focus and remember and remain efficient was fantastic. This is what happens if I take a full dose of my cannibus medication. While I was doing so well, I was considering my observations of others that use recreational weed. Upto this point, I knew that weed didn't have the same effect on me as I did others. Everyone else described being "high". I never get that sensation, I only get pain relief. Thinking back now, I see that my hallucinations also lessened in intensity as I used weed for pain management. Funny that I used to think that I was missing out on the high everyone else seemed to experience, just to find out that I've been tripping my whole life. I'm learning a lot about myself, and I want to understand more. Am I causing long term harm to myself by taking these medications (not drugs, since not used for a recreational experience)? Or did I discover a legit way to temper my episodes? And I want to know WHY and HOW these work for me. It doesn't seem logical that what causes normally wired brains to hallucinate somehow has the reverse effect on me. I wish I knew who I could ask. I just want a good long indepth conversation with a Dr who understands neurochemistry and neurological interactions. Not sure how to approach it, but I feel more confident that I'm not crazy (technically). This really is happening to me. And I'm Not the Only One! Thank you for posting so that I could find your story.
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