Posted 1/23/2021 12:18 AM (GMT 0)
I definitely do not have the level of experience with all of this that you do, but I do relate somewhat.
I was very ill with Lyme in my early twenties, but wasn't diagnosed at that time. I kept being told I had PTSD and anxiety, and was put on klonopin. Though I took a one-fourth pill of the smallest dose, I became dependent on it quickly. It did nothing for my symptoms, but maybe it gave my nervous system a small break for a while. After four months, I wanted to stop because I had not seen much improvement and I hated dependence, so I stopped; I could not make the doses smaller, and I suppose I could have spaced the doses out to taper off, but I don't think I did. Withdrawal was unpleasant in a crawling-out-of-skin way, but by two weeks, I felt better. At that point I was able to start making real progress with healing, and was very healthy for many years.
After a very stressful time period, I became ill again, with sporadic symptoms. They were labeled migraines by the specialists I saw - basically three-day episodes of all the Lyme symptoms, about once per month. For these "migraines" I was prescribed Lexapro, an SSRI. Again, no symptom help, and this one also messed up my gut. I stopped taking it with a very long and slow taper, and was miserable. I took a half-dose of Lexapro for four months, and gradually cut the pills tinier and tinier for four more months to taper. I found Lexapro withdrawal far worse than klonopin withdrawal, oddly enough, maybe because of the gut dysbiosis it had caused interfering with neurotransmitter production. I continued to decline until I was in 24/7 "migraine" mode, eventually leading to my Lyme diagnosis about two years post-Lexapro.
I was not aware of having Lyme when I went through either withdrawal, but I suppose both times I focused hard on the usual ways of managing stress and calming the nervous system that I was familiar with at the time - meditation, movement, positive social relationships, touch, massage, craniosacral therapy, acupuncture, breathing exercises, avoiding stimulants, and guided visualization.
My belief is that the gut is far more key in neurotransmitter regulation and production than it's usually given credit for. Sometimes people say that they have no gut symptoms, but then identify as anxious or depressed, and to me that can signal a gut issue. I'm not saying this necessarily is an issue for you, but this is what my own experience indicated to me. I think gut health always should be considered and optimized in treatment of any chronic illness, but especially anything involving neurotransmitters.
I'm curious if you have tried cannabis forms other than smoking, vaporizing, and edibles. I know that options vary a lot in each dispensary. Have you tried a tincture or a concentrate? Or chatted with someone knowledgeable at a dispensary? I have been impressed with the level of expertise some employees have about the physiological effects of each strain and form. Do you find any benefit from CBD-only products?
I will be interested to learn how things come together for you, as I know a few people who have self-medicated with cannabis long-term and are not doing well without it afterward. I wish there were more good studies about long-term effects of cannabis use on libido, mood, and other systems. It's powerful medicine, and personally I would use it in a heartbeat over pharma now that it's legal where I am, but I suppose like any medicine there are benefits and the possibility of drawbacks. (Most of my medicinal cannabis experience is with CBD-only tincture and topical balms, but my partner uses edibles and tinctures that contain THC as well in treatment of autoimmune joint issues.)
I definitely relate to being exhausted by all the experimentation. It can be stressful to feel like you need to be hyper-aware of your body in order to notice symptoms, since as an experimenter, you need the data! This process is so frustrating, and it's hard to be patient. My experience probably doesn't move you forward at all, but I thought I'd share just in case. I can tell that you have thought about all of this thoroughly, and I hope that you find a comfortable path forward very soon!