Alexandre

It's not just normal sleepiness, is more like, my body enters in some kind of "mode" that I can't function and if I lie down I might end up sleeping 2-3-4 hours depending on how hard it hits. And if I try to just sleep less and wake up, I might still be shivering cold and will have to go lie down again. It's been a while since it last happened and then it happened just now after dinner, but it was mild. No cold and I just slept for 2 hours. Idk about my BP because I'm just getting out of a crisis so my bp was all over the place and it was the first time I tracked. I was having like 185 when up, and then regular when lying down. Sometimes it spiked up after eating too. I'll try to have a baseline.

That seems to happen pretty randomly. And it has different degrees. After I eat my body gets really cold even if it's in a summer's hot day. And I get so sleepy, if I don't lie down, my head keeps falling constantly. It's not exactly like I'll faint, but I don't think it would be safe to walk around when I'm like this. When it's less extreme I don't feel the cold, just the sleepiness. I tried to mention this to Drs. but they pretty much ignore this symptom and try to go on about the others. It's so strange they just pretend they didn't hear. I also not sure if my BP drops (it's normally already pretty low though) but it's not that feeling of sudden low bp with cold sweats and nausea. It's just like my body shuts down and has to go in rest mode. Anyone know what's that, or what to do, or which Dr. to talk to? (gastroenterologists are not an option here. They have no clue)

Yes I compounded it 25, 20, 15, 10, 5, 0 and it was pretty bad but not unbearable. The problem was that I kept getting worse and worse after the withdrawal but no Dr. seems to believe it was due to the Duloxetine. I ended up a whole year in a pretty bad shape and than another year getting back to normal again. But bodies are different and now I question if it was really the duloxetine withdrawal created that h***. I take pregabalin which is pretty much the same as gabapentin, and it was the best drugs for me. No side effects and helped me with the pain, but doesn't seem to do much for sleep for me I guess...

Yes, I remember Dr. Cheney saying it was among his top 3 best medicines for CFS. But I don't think I have EDS tbh, neither most Dr. That was just one Doctor that guessed it. Cymbalta was the start of my nightmare. I didn't mean to make my first post too long so I didn't include all my past history. But everything started when I was taking Cymbalta 30mg (the lowest dose) and was having a lot of side effects. After around 1-2 months of taking it, my pain just got like 60% better. But I didn't thought it was because of the Cymbalta since I was doing a lot of other stuff at the same time. We tried to increase the Cymbalta dose, but side effects were unbearable so we decided to get me off of it. The withdrawal was hellish. And that's when I first started having these stomach pains, and couldn't eat anything. It got worse and worse and worse. I couldn't left my bed for 2-3 months and then I couldn't barely leave my house for around a year. It took me like 2 full years to get back to where I started. (still with a lot of pain, but functioning normally). Now I wonder if it was the Cymbalta withdrawal or the fact I was taking Ambien (or both). Because when I finished my Klonopin withdrawal, I was put on Ambien for sleep and while the effect made half my symptoms go away for around 3 hours, after one month I started having a lot of the same symptoms I had back then. Like brain fog, light/noise sensitivity. It's just crazy...

Yes! I'm really glad I found something, but thank you for the link. I didn't know. I know close to nothing about dysautonomia. I know tons about fibromyalgia, CFS and even Ehlers Danlos. The diagnoses I've had through my life. Dysautonomia is something new for me, so anything you can show me about that link with the gut it would be awesome. Just to be clear, last year I was going on trails, living on the beach, working out heavy, having a night life, making my company grow a lot. I had a lot of pain in my body, and sometimes in the gut, but I could function like a normal person (sometimes more than a normal person). All that while tapering Klonopin (although I had depression effects and other stuff from the tapper). Then in December everything crashed when I got close to 0mg. I was shivering cold, couldn't barely stand. Light and noise sensitivity. A LOT more pain. etc etc. Now I'm getting back to where I was prior to that crash.

Actually I'm taking CloBAZAM (Onfi) and not Klonopin now. But I felt how I was without any benzo and realized I get irritated, agitated and a lot less empathetic with benzo. The same happened with Klonopin, but since I was for so long on Klonopin, I thought I was like this before stopping Klonopin. Maybe another won't do that? I think he gave Onfi cause I can take it both day and night and I don't feel sedated (nothing at all). And I think it has less risk for dependency (but not sure about that one) Yes, I've seen more gastroenterologists than stars in the sky. They have NO CLUE at all. One of them said I needed a gastrectomy. Technically the diagnosis was gastroparesis, but the gastric emptying study didn't show problems and they have no idea why Benzo makes everything work again. I've had 4 endoscopies. All of them perfectly fine.

No, I'm on Flornief. I have a pretty low BP and I think Betablockers are for High BP right? (correct me if I'm wrong). But I don't think Florinef is doing anything for me to be honest, I'll stop it soon and will discover. Edit: Yes, about taking lower dose. I don't think I can do that. No one has any idea why but my digestive system just shuts down and stop working when I don't take it. It's bizarre, but I think I might need an even higher dose. For now I'll hold for a moment.

Yep, similar here. It was the first time I was diagnosed with pots, my heart would go to 195 when I got up. Sometimes even sitting. With Clobazam things are pretty much better now. I don't like myself that much with Clobazam, it makes a lot of things less interesting, I become more cold and irritated. But I prefer anything over what I experienced those last 6 months. It was h*** on earth.

Well I don't think so, I went 0.1mg every 2-3 weeks. It took me a whole year to go from 2.5 to 0. Idk, I could go slower, but I think if I have to do it all over again (since I'm on benzos again) I would do a fast taper with flumazenil on some specialized facility. The thing is, I went to a buuunch of Drs. and none of them thought it was withdrawal happening, they all thought that Klonopin was simply working as a good treatment to something else.

But why the withdrawal hit so hard all of the sudden? Like, I was tampering slowly and one day all of the sudden my stomach stopped functioning. Then it got worse and worse. Also, the first time I had that stomach pain was right after a Duloxetine withdrawal and before I even tried any benzo. I was taking Ambien though. sorry for so many questions but then I just can't withdrawal at all? Because I don't know if I would survive that withdrawal or not, but I certainly wouldn't without a feeding tube. Right before I got back on Benzos, a dr suggested having a gastrectomy.

I'll try to keep it short. I have chronic widespread pain (technically fibro) since 17. I'm 32 now. When I was 24 I started having massive stomach pain after eating anything. Things got really bad with all my symptoms. A lot happened in my medical history to explain here but, I could get it under control. I tried so many things, I wasn't sure what did what. One of those things was Klonopin. Problem is I took it for 6 years. Then I decided to stop Klonopin last year (2021). I tapered 0.1mg each 2-3 weeks. From 2.5 to 0. I had some really bad side effects but it was bearable. Things got really bad when I hit 0.3. I started having acute stomach pain that lasted 8 hours after eating and that kept getting worse and worse. Then everything got much worse to the point I couldn't eat anything but crackers and water. It was like my whole digestive system stopped working. It was hard to swallow and sing. I started feeling freezing cold always, nausea, anxiety skyrocketed, my whole body pain got MUCH worse. Everything was going downhill. Then a Dr. put me on Onfi and in 15 days I was around 70% better. I could eat again, normal body temperature, etc. etc. Anyone has any idea what's happening?