I got a SGB for long covid/me-cfs, and I went from being super light sensitive, stuck in a dark room, and easily startled, to being able to look outside during the day again and no longer startling. However, it also made me twice as sensitive to LDN. Once I realized what happened I had to change my dosage until it started to work correctly again. I haven't done SGB since then so I don't know if it will still affect LDN dosage in future treatments. Fair warning to people on LDN.
Clonidine does have a notable rebound effect, which can be a real issue for some people. This makes guanfacine a somewhat better choice, where it is properly titrated to the needs of patient.
I appreciate this presentation and your research, but please do not denigrate those who, desperate , turn to alternative methods. You have no idea how difficult it is for suffering people to find help until you’ve lived it.
Not sure I understand your comment here. There's a whole library of different videos and lectures talking about the different approaches and treatments. I certainly didn't pick up on any denigrating in the video. Plus, these videos are clearly indicated for healthcare providers, not necessarily patients.
I do t think they’re doing that. I’ve certainly experienced that, but I’ve watched this twice, & I didn’t hear anything like that. Maybe it felt that way bc you’ve been treated that way before? I know it happens to us a lot.
I’m not happy about using them, but I have a severe case of ME (similar to post viral syndrome) with OI, & severe PEM. I lost my whole life to this disease. Believe me, if you were as bad as I am, & it didn’t stop, you’d take it. Just for a break in feeling so physically horrible. Feels like you’re dying. I’ve had this illness now for at least 12 years. I was misdiagnosed repeatedly, then undiagnosed. I used to be a research biologist. I had to do all the research myself to try to figure out wth was going on w/ me. I saw numerous doctors of various disciplines. Ruled out all the usual suspects. I only recently figured out what I had. Every time Id start feeling better, Id try to resume my exercise routine, start hiking again, only to realize this whole time, I’ve been sabotaging myself, making my illness progress. I can’t walk my dog. I can’t cook, can’t stand up long. I can’t handle temps over 70F bc it triggers symptoms like vasovagal syncope, OI, or even PEM. I have the, “tired but wired,” symptoms. I also have terrible nightmares that go on & on, and I wake up dripping with sweat. Then when I wake to change into new pjs, I start having what looks & feels like the rigors. I lost my job, & pretty much everything else to this illness. Mind you, I used to endurance hike in the mountains 30-40 miles/week, plus Pilates, plus my job. Now I’m barely able to do a little 🎨 a couple hours at a time, 2x a week, & listen to a few lectures. I’m extremely isolated bc I’m single with no children, & talking causes PEM for me., so socializing isn’t a possibility anymore. Benzodiazepines can cause lots of problems over time, particularly if you’re not cautious in your use. I don’t take valium everyday. I use it as needed only. I can tell when I’m going downhill, & nothing else I’ve tried has worked. That’s when I’ll take it. So, maybe 3x/week on average. If I’m having a severe case of PEM, I may have to take it several days in a row. I can tell you it absolutely does help, & even my brain feels less foggy. Perhaps it actually does have some benefit on mitochondrial dysfunction or myopathy. My point is, if it gets bad enough, sometimes there is no good option, so you have to pick the least worst.
I got a SGB for long covid/me-cfs, and I went from being super light sensitive, stuck in a dark room, and easily startled, to being able to look outside during the day again and no longer startling. However, it also made me twice as sensitive to LDN. Once I realized what happened I had to change my dosage until it started to work correctly again. I haven't done SGB since then so I don't know if it will still affect LDN dosage in future treatments. Fair warning to people on LDN.
Clonidine does have a notable rebound effect, which can be a real issue for some people. This makes guanfacine a somewhat better choice, where it is properly titrated to the needs of patient.
I appreciate this presentation and your research, but please do not denigrate those who, desperate , turn to alternative methods. You have no idea how difficult it is for suffering people to find help until you’ve lived it.
Not sure I understand your comment here. There's a whole library of different videos and lectures talking about the different approaches and treatments. I certainly didn't pick up on any denigrating in the video. Plus, these videos are clearly indicated for healthcare providers, not necessarily patients.
I do t think they’re doing that. I’ve certainly experienced that, but I’ve watched this twice, & I didn’t hear anything like that. Maybe it felt that way bc you’ve been treated that way before? I know it happens to us a lot.
I won't use benzines
I’m not happy about using them, but I have a severe case of ME (similar to post viral syndrome) with OI, & severe PEM. I lost my whole life to this disease. Believe me, if you were as bad as I am, & it didn’t stop, you’d take it. Just for a break in feeling so physically horrible. Feels like you’re dying.
I’ve had this illness now for at least 12 years. I was misdiagnosed repeatedly, then undiagnosed. I used to be a research biologist. I had to do all the research myself to try to figure out wth was going on w/ me. I saw numerous doctors of various disciplines. Ruled out all the usual suspects. I only recently figured out what I had. Every time Id start feeling better, Id try to resume my exercise routine, start hiking again, only to realize this whole time, I’ve been sabotaging myself, making my illness progress. I can’t walk my dog. I can’t cook, can’t stand up long. I can’t handle temps over 70F bc it triggers symptoms like vasovagal syncope, OI, or even PEM. I have the, “tired but wired,” symptoms. I also have terrible nightmares that go on & on, and I wake up dripping with sweat. Then when I wake to change into new pjs, I start having what looks & feels like the rigors. I lost my job, & pretty much everything else to this illness.
Mind you, I used to endurance hike in the mountains 30-40 miles/week, plus Pilates, plus my job.
Now I’m barely able to do a little 🎨 a couple hours at a time, 2x a week, & listen to a few lectures. I’m extremely isolated bc I’m single with no children, & talking causes PEM for me., so socializing isn’t a possibility anymore.
Benzodiazepines can cause lots of problems over time, particularly if you’re not cautious in your use. I don’t take valium everyday. I use it as needed only. I can tell when I’m going downhill, & nothing else I’ve tried has worked. That’s when I’ll take it. So, maybe 3x/week on average. If I’m having a severe case of PEM, I may have to take it several days in a row. I can tell you it absolutely does help, & even my brain feels less foggy. Perhaps it actually does have some benefit on mitochondrial dysfunction or myopathy.
My point is, if it gets bad enough, sometimes there is no good option, so you have to pick the least worst.
I would use a tea of stinging nettles.