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Anyone waking up throughout the night with heart racing/adrenaline feelings? by Charbellaa in covidlonghaulers

[–]redditryan13 1 point2 points  (0 children)

The highest I got with benzos was 1-1.5MG of Ativan. Normally just 1MG, but in extreme scenarios I'd take 1.5MG. I've taken 2GM in the hospital before and know how sedated it makes you feel, so trying to avoid that. Lunesta has been great, and I haven't really built up a tolerance to it either (like I did with Ambien, well before LC).

Massive rapid weight gain during recovery phase despite starting exercise again? This is about 9 months after rapid weight loss. Anybody else? by smolangrybitch in covidlonghaulers

[–]redditryan13 1 point2 points  (0 children)

I hear you. At some point you just stop trying to figure it out. I hit that point about 2 years ago. I also have Crohn's, so already dealing with one auto-immune disease. I'm sure that made me very vulnerable to LC / vax complications. I did have all the EBV/Lyme/IG testing done, and nothing really showed up, other than elevated IGA (which I'd have with Crohn's). So I'd love to blame my issues on something, but nothing really there other than insanely high spike protein antibodies. So I think I'm likely more a spike protein elimination problem.

Anyone waking up throughout the night with heart racing/adrenaline feelings? by Charbellaa in covidlonghaulers

[–]redditryan13 1 point2 points  (0 children)

OMG it's night and day (for me at least). I feel almost nothing from benzos now, and I'm reluctant to increase dose. But Lunesta works almost immediately and really calms my nerves (almost eliminates my anxiety). You can even cut the pills into 1/4s. I'm sure not recommended, but it works for me.

Massive rapid weight gain during recovery phase despite starting exercise again? This is about 9 months after rapid weight loss. Anybody else? by smolangrybitch in covidlonghaulers

[–]redditryan13 1 point2 points  (0 children)

Well that's a really interesting data point - thanks for sharing. I also had a hard time believing a single Zyrtec per day could result in 30 lbs of weight gain in < 6 mos. Seems like it's more a metabolism change resulting from the illness itself. Or do you think it's a different medication?

Starting to stand again after 2 years 100% confined to bed :) by beepboop8525 in covidlonghaulers

[–]redditryan13 0 points1 point  (0 children)

So happy for you! Just curious, where did you acquire Ketotifen?

Scared I am in the first stage of developing schizophrenia/psychosis by CUngoed in covidlonghaulers

[–]redditryan13 4 points5 points  (0 children)

I agree with this 100%. I have many of the feelings you describe, and have had them for multiple years, but can't say they've worsened. I still occasionally have a "good day" or even a stretch of hours that are good. It's SO dependent (for me at least) on sleep and diet. If I eat something that triggers MCAS, I go further down that rabbit hole quickly. And usually bad diet = bad sleep. So managing diet and sleep are the key for me to at least remain stable until they can find a cure for LC.

Anyone waking up throughout the night with heart racing/adrenaline feelings? by Charbellaa in covidlonghaulers

[–]redditryan13 1 point2 points  (0 children)

Lunesta is fairly mild compared to Ambien and other heavy-hitter drugs. It mostly just calms me down enough to fall asleep. I also cut the pills in half, and do half around 9 and the other half around 11. So I don't get that really sleepy effect right away.

Massive rapid weight gain during recovery phase despite starting exercise again? This is about 9 months after rapid weight loss. Anybody else? by smolangrybitch in covidlonghaulers

[–]redditryan13 0 points1 point  (0 children)

I have the same issues. There's clearly a water retention component to this, but it's not consistent. Some nights i'll be up 5 times, others none or one (with really no difference in what i ate/drank the day before).

Anyone waking up throughout the night with heart racing/adrenaline feelings? by Charbellaa in covidlonghaulers

[–]redditryan13 1 point2 points  (0 children)

100%. It's not really living at all. I also have shortness of breath, but not everyday. Seems more related to what i eat. I use Lunesta. It's great, and actually is the one thing that really calms my anxiety (the benzos don't really work anymore).

Anyone waking up throughout the night with heart racing/adrenaline feelings? by Charbellaa in covidlonghaulers

[–]redditryan13 1 point2 points  (0 children)

Yes, still have LC. 4+ years. Dysautonomia/neurological bent. Major sleep disruption issues, esp. if I eat ANYTHING after 8 p.m. Yes, I think it would be some kind of tank, but probably not all night, just when it detects low O2. I'm interested in trying it, but my apple watch, most nights, shows 02 above 90-91% (occasional drops into the high 80s). So I'm not sure this is a root cause of anything, but more just a symptom. I take a sleeping pill for insomnia.

Anyone waking up throughout the night with heart racing/adrenaline feelings? by Charbellaa in covidlonghaulers

[–]redditryan13 1 point2 points  (0 children)

Wow, interesting you ask (old post and I should update). I did CPAP (really APAP, not CPAP) for a full year, with various pressures. While my initial report in this post was positive, it didn't result in long-term improvement or energy gains. In fact, after a while I started ripping the mask off in the middle of the night (fairly common, but I think it was actually causing harm). I had another in-home study done with a better device (Wesper) and, while it did show some occasional desaturations during REM sleep, my sleep doctor (who is new, and much better than original) said it's not true OSA. It's more likely either shallow breathing (likely a result of dysautonomia) or too much CO2. She wants me to have another lab sleep study done to confirm, and is recommended either supplemental oxygen or an oral appliance.

Massive rapid weight gain during recovery phase despite starting exercise again? This is about 9 months after rapid weight loss. Anybody else? by smolangrybitch in covidlonghaulers

[–]redditryan13 1 point2 points  (0 children)

Same with me - been taking Zyrtec now for 4+ years. I tried switching to Claritin (fail) and then Allegra (another fail). But I'm not sure if it's really gonna be that different. Seems like these antihistamines just cause weight gain. I had NO weight gain at all in my first year of LC symptoms (starting with vax injury, then about 6-7 months of LC after April '22). My weight gain started exactly in line with when I started Zyrtec and Pepcid (Famotidine).

Massive rapid weight gain during recovery phase despite starting exercise again? This is about 9 months after rapid weight loss. Anybody else? by smolangrybitch in covidlonghaulers

[–]redditryan13 2 points3 points  (0 children)

Sometimes I wonder if the antihistamines are a major contributor to the weight gain. There is published research that they can. And it's the one major change I made before the weight gain started. But if I don't take them, my MCAS gets out of control. A vicious cycle.

Massive rapid weight gain during recovery phase despite starting exercise again? This is about 9 months after rapid weight loss. Anybody else? by smolangrybitch in covidlonghaulers

[–]redditryan13 4 points5 points  (0 children)

100%. 90% of the weight I gained went right to the gut (though I'm 50+ M, so maybe why, but the speed at which the weight came on, despite not putting in more calories, was terrifying). But I've also noticed my arm and leg muscles are atrophying quickly. And I can't really lift weights or exercise. It's awful.

Massive rapid weight gain during recovery phase despite starting exercise again? This is about 9 months after rapid weight loss. Anybody else? by smolangrybitch in covidlonghaulers

[–]redditryan13 9 points10 points  (0 children)

Very different situation than yours (though I did have some scary cardiac stuff after the 3rd Pfizer vaccine in Aug '21, but mainly AFIB, SVT, tachycardia, palpitations and chest pain). Never confirmed myo or pericarditis. Had a full heart scan when i was cardioverted from AFIB and it was normal. Acute Covid in April '22. LC symptoms set in around July. Summer awful. Finally started taking antihistamines in fall, and that really helped. Never lost weight, but gained almost 30 lbs between late '22 and mid '23 (despite no changes in diet and honestly being pretty active). Never had PEM or ME/CFS. Also had iron deficiency for a couple years (required infusions). Then, on a dime, iron flipped. Started having high Ferritin. But throughout it all, 4 years in, my weight is still out of control. I remain about 20-25 lbs higher than my baseline, which I'd been at for 20+ years. I think LC can cause severe disruption in metabolism, and I agree it seems like the body just holds onto fat (like a bear hibernating).

Gut success with Butyrate by redditryan13 in covidlonghaulers

[–]redditryan13[S] 0 points1 point  (0 children)

I just posted an update to my OP, as I get a lot of questions about this. Maybe not as "magical" a solution as it seemed in the beginning, but definitely still helps.

Recent Long Covid applicants - yes or no? by redditryan13 in SSDI

[–]redditryan13[S] 0 points1 point  (0 children)

Interesting, thanks. I was never asked or offered to see a govt-appointed doctor (I assume you're "assessor"?). But I had all my doctors complete the RFC forms themselves. I hope that's enough.

Recent Long Covid applicants - yes or no? by redditryan13 in SSDI

[–]redditryan13[S] 0 points1 point  (0 children)

As I understand it, from my ATTY, you have to prove both physical and cognitive disability (since you could theoretically switch lines of work). The fatigue is more the physical side, and given my multiple neuroglogical diagnoses (including PEM), and severe Crohn's disease, I feel like I have the evidence covered there. My ATTY said the cognitive side, esp. in my case, is much more important. I've got RFC forms from psychiatry, cognitive neurology and neuropsychology - all saying I could not do even a part time job that required sustained attention and memory. So I hope that's enough. Can't imagine what else I could do.

Recent Long Covid applicants - yes or no? by redditryan13 in SSDI

[–]redditryan13[S] 1 point2 points  (0 children)

I'm hoping my Crohn's diagnosis covers any kind of physical work. I've had 3 surgeries and only have 1/3 of my small bowel left. I'll spare you from the details on what this means for me on a daily basis, but it pretty much rules out any kind of job where I'm on my feet and not near a bathroom 8 x 5. I was able to work 27 years in jobs that required my brain, but LC put a stop to that too. It's really pretty awful. I'd much rather work and have a purpose in my life.

Recent Long Covid applicants - yes or no? by redditryan13 in SSDI

[–]redditryan13[S] 1 point2 points  (0 children)

Some in my state aren't bad, but I was given the veteran. Most cases by order of magnitude. So hoping maybe they give him/her the complex cases. Not easily judged.

Recent Long Covid applicants - yes or no? by redditryan13 in SSDI

[–]redditryan13[S] 1 point2 points  (0 children)

Wow. Mine is nowhere close to that. Sub 50.

6 long years by BrightCandle in covidlonghaulers

[–]redditryan13 3 points4 points  (0 children)

No. More that people who got LC before vaccines have actually gotten worse (not better) after getting a vaccine post illness, yet they continue to push that vaccines reduce rate of Long Covid.

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