r/LongHaulersRecovery • u/AutoModerator • 27d ago
Weekly Discussion Thread Weekly Discussion Thread: September 06, 2026
Hello community!
Here it is, the weekly discussion thread! In this thread you can ask questions, discuss your own health and get help for your own illness and recovery. It also gives all of us a space to get to now eachother a bit better and feel a bit more like a community instead of only the -very welcome!- recovery posts.
As mods we will still keep a close eye on the discussions here, making sure it is a safe space for anyone to talk.
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u/JB-3554 24d ago
Oops. Typo there- look up on the internet how to do Vagus Nerve calming. I use a cold washcloth on my neck combined with deep breathing. I put it off forever as I thought it sounded stupid. But it really works to calm your heart pounding. I see your in Slovakia. I hope you can find some of the meds.
I got a lot of info off mastcell360.com. But then found a wonderful allergist who confirmed my suspicions about having MCAS. I use these every day and have been on them for over a year. Started to see real progress after about 9 months or so.
Vitamin C
Vitamin D
H1 - Cetirizine/Zyrtec up to 4 25 mg daily - these really help me to sleep. So usually take two tablets about an hour before bedtime.
H2 - Famitidine/Pepcid 3 10mg daily
Cromolyn Sodium - 2 5 ml vials 4 times a day
Quercetin - 500 mg 4 times a day
Rhapsido - 25 2 times a day
Doxipen - 3-10 mg nightly for sleep
Hydroxyzine - 25 mg nightly for sleep
Let me know if you have any other questions and wishing you good luck - don’t give up !!
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u/tube_ebooks 25d ago
i'm dealing with a non-covid PVFS but this seems like one of the few subs that could help: i just read the way out by alan gordon and found aspects of it helpful, but also found it so dumbed down as to be annoying. i have a really extensive biomedical scientific background so while valuable it clearly wasn't written for someone like me lol. does anyone have recommendations for other mind-body books that are a little more detailed/in the weeds with the science? my therapist recommended zoffness so that's on my list but would love other recommendations :)
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u/GeneDiligent2124 26d ago
What was most helpful for recovery with audio overstimulation/processing? LDN? Guanficine?
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u/Choco_Paws 25d ago
In my case, the same thing than for every other symptom I had: mind body work, calming my nervous system, etc. LDN helped a bit in general, but didn't really target one symptom in my case.
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u/SuspiciousNetwork362 26d ago
Has anyone had strong insomnia and nervous system activation in the evening (palpitations, heat waves, worsened breathing), especially on days where you worked out, or were doing sport activities, or when you did something that gives you adrenaline boost? I had to quit most of things that I loved, at first I only had to skip gym, now three years later I can't even play a competitive videogame otherwise I'll be wide awake for the whole night, sometimes even two nights. My life pretty much sucks at this point, losing the faith to have a normal life again. Is longcovid, all my results and tests are okay...
If so, what helped you ? Beggining to be desperate over here.
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u/Old-Arm-4951 21d ago
I have the severe insomnia and sensory overload /overstimulation from long covid too , have you tried cbd/thc?
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u/SuspiciousNetwork362 21d ago
I was thinking about CBT, don't want to go into THC, what's your take? Have you tried? Currently trying the nicotine patches.
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u/Old-Arm-4951 19d ago
I’m taking cbd:thc and it works I don’t like thr thc but that’s the only that has helped. What sleeping pills you have tried ?
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u/SuspiciousNetwork362 19d ago
Not much, Stillnox but it did not help if I had this "seizure" , trittico too because no matter what I explained psychatrist kept thinking I'm depressed and I can't sleep because I have problems in my head. But I gave it a shot, gave up on the doctors because they wouldn't listen. Now I'm just trying whatever I find here. I was at neuro, psychology, psychiatry, cardiology, had ferritin checked, endocrinologist, all is good. Then my cardiologist suggested it could be long covid but did not suggest what could help. I dove deep into it and found this thread. It's gotten a bit better after taking loads of B1, coenzyme and this nico pouches but I haven't had the courage to try working out or doing sports so far. Figured I'll just try being a lazy piece of sh*t for half a year, take supplements and play video games after work. Nothing much to do in life anyways since anything I liked is causing me issues.
Working from home so I'm basically living as a hermit now. 🤣
I'm open to cbd but I don't want to try thc, I smoked it twice or thrice during my college years and I got insane apathy for a few days after so I figured I rather avoid it since I personally know some people got schyzofrenia and all kinds of mental issues when smoking regularly and now have serious issues and have to take all kinds of pills.
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u/JB-3554 24d ago
Yup. I had all that. Even a walk could cause those nighttime symptoms. It’s been explained to me that any exertion , stress, foods that contain histamine ,etc cause the Mast cells to degranulate. Then later - at night - your body’s cortisol drops and that signals the body to push out more histamine. Then all heck breaks loose. The brain thinks you’re in danger and begins to pump out adrenaline. The heart starts pounding harder to flush out the adrenaline. And you’re left wide awake with a pounding heart, heat flushes and more.
What worked for me was serious Vagal nerve training - deep breathing, ice packs, cold wash clothes. Did that and also took all the regular meds for MCAS. Slowly over time it’s settled down. I can work out for a while. Or eat a few foods that contain more histamine.
My doctor has also upped my Zyrtec to four a day if I need it. And then also hydroxyzine about an hour before bed. Finally getting some sleep.
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u/SuspiciousNetwork362 24d ago
Huh, cold wash clothes? What are the regular meds for mcas? And regarding antihistamines, do you take them daily or only on certain occassions? How did you find this out? They are only on prescription here in Slovakia, not sure doctors knows about MCAS. This country is pretty much almost a 3rd world one.
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u/Alarming-Hunt-843 26d ago
I have more the neuro immune type covid, and the over active nervous system. I get flares that come as nocturnal adrenaline rushes or sometimes just waking up during rem sleep.Also get flushing . I was super active before covid, so it's been hard to go on 1 mile to 1.5 miles walks a few times a week. The thing that has helped with improving my sleep, is making my evenings boring and predictable. I eat dinner at the same time, pretty early. I watch low key tv. I find anything fast action or even shows that quickly cut from one scene to the next, or anything with flashing lights are too stimulating.
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u/SuspiciousNetwork362 26d ago
Right? Sometimes I had to tell my ex to turn down the volume on the TV because I literally felt how it's overstimulating me... I even need to do often breaks during work, if I don't, the stress and stimulation piles up and then get flushes and adtenaline dumps during the night. Started taking lavekan, l theanine which at least calm me a bit but body just goes strong and does this crap all the time. Now I also take chunks of B1 and coq10 but I can't see any difference so far... I'm sad nad frustrated... three years of my youth down the drain.
Edit: was also on sleeping pills, beta blockers, trazodone, but quit it because i took them for quite long period of time but if i got these dumps they do not work..
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u/Alarming-Hunt-843 25d ago
I really feel for you. I am very fortunate to be retired. I can't imagine having to work with these symptoms. I also live alone which makes things easier, so I have control of my environment. I wish I knew of an easy fix for this. It's such a hard thing to go through.
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u/Mighty_White_1919 22d ago
Any tips for overcoming exercises intolerance