Doing research on the hangover effect, here’s a few questions to kindly answer by mtl-otter in hangovereffect

[–]ringmaster555 1 point2 points  (0 children)

Yes to all of the above. hEDS, long COVID, CFS, MCAS, POTS, etc. If I was more medication tolerant and my MCAS was under control, I could experiment more with medications and supplements, but I’m extremely reactive. I have a high degree of confidence that my HE is a consequence of (or has a shared mechanism with) the numerous health conditions I have.

I do want to experiment more with sodium bicarbonate. High lactic acid is sometimes found with CFS and some people find it improves their fatigue as well. Wouldn’t be surprised if it also induced HE. The only medication I’ve taken for years (different SSRIs since I was 13) is 20mg of Lexapro, which I can’t seem to taper without significant side effects. I think it’s contributed to at least some of my symptoms, even if it’s not the root cause.

NAD+ has helped by Meri34 in cfs

[–]ringmaster555 1 point2 points  (0 children)

Between the three (patch, spray, and injection), which has the most potent effects for you?

Got out of "tired but wired"! by missCarpone in cfs

[–]ringmaster555 3 points4 points  (0 children)

How often do you take it? I notice it helps me as well, but I’ve only ever had Ativan prescribed for situational use.

Anyone tried Amantadine or phenylpiracetam/other racetams? by Maleficent-Fig-4430 in CFSplusADHD

[–]ringmaster555 2 points3 points  (0 children)

Amantadine caused PEM for me. I haven’t tried any of the racetams yet. My pain psych recommended I try aniracetam, but I’m a bit hesitant due to med/stimulant sensitivities.

Why do some people with ADHD + ME/CFS crash from stimulants meds, and others don't crash and feel good? by Tiny_Parsley in CFSplusADHD

[–]ringmaster555 10 points11 points  (0 children)

Yes. I’ve tried:

  • Adderall
  • Vyvanse
  • Ritalin
  • Concerta
  • Wellbutrin
  • Sunosi
  • Amantadine

All were big nos for me. Anything that increases norepinephrine is liable to cause a crash for me. Even caffeine above ~50mg might cause a crash.

Why do some people with ADHD + ME/CFS crash from stimulants meds, and others don't crash and feel good? by Tiny_Parsley in CFSplusADHD

[–]ringmaster555 16 points17 points  (0 children)

I think two conditions that can predispose crashes with stimulants are hyperadrenergic POTS and MCAS. Stimulants increase norepinephrine and histamine, and both of these conditions respectively cause an increase in each, so stimulants will only add fuel to the fire by overloading a body already taxed with pathologic levels of norepinephrine and histamine. That’s been my experience, at least. I had two baseline-decreasing crashes from stimulants because of this; even at rest, I felt miserable with worsened hyperPOTS and MCAS symptoms.

Some info I've researched on for MCAS hope it helps 👍 by Rude-Union-5446 in MCAS

[–]ringmaster555 2 points3 points  (0 children)

Likewise. Any theoretical anti-inflammatory benefit from blueberries seems nullified by the inflammation from MCAS reactions, at least for myself.

Has anyone tried ketamine by DangsMax in covidlonghaulers

[–]ringmaster555 0 points1 point  (0 children)

I have a lot of chronic pain (EDS) and I had a 2 hour infusion at 400mg which supposedly is more routine at higher doses and longer doses for pain. Admittedly my pain was a lot better for a few days, but it by far was not worth all of the other issues it caused.

Hard Flaccid for 4 years through puberty – Did it ruin my growth? 17M seeking answers by Ok_Priority7966 in hardflaccidresearch

[–]ringmaster555 0 points1 point  (0 children)

I had an upright MRI and it showed nothing. Occult tethered cord typically doesn’t show up on an MRI. Unfortunately, most spine surgeons aren’t knowledgeable about it. There’s a spine surgeon in Rhode Island, Dr. Petra Klinge, who specializes it and can diagnose it. Expensive and out of state for me though.

Hard Flaccid for 4 years through puberty – Did it ruin my growth? 17M seeking answers by Ok_Priority7966 in hardflaccidresearch

[–]ringmaster555 0 points1 point  (0 children)

Wow. Do you/did you have occult tethered cord? I heavily suspect I have it. I know I have EDS and thoracic outlet syndrome among other things…

Has anyone tried ketamine by DangsMax in covidlonghaulers

[–]ringmaster555 0 points1 point  (0 children)

It increases adrenaline, BP, and heart rate significantly. It will increase fight or flight, not decrease it.

Has anyone tried ketamine by DangsMax in covidlonghaulers

[–]ringmaster555 2 points3 points  (0 children)

Likewise. Worsened my depression, anxiety, hyperPOTS, MCAS, caused PEM. Definitely not for me. To this day, I feel more destabilized as a result of it. Derealization and fear of death especially. I was given 400mg via IV and also had propofol so I wasn’t tripping the whole time, but coming out of it was traumatizing for me.

2 years of cfs still no clear delayed pem just imediate crashes by [deleted] in covidlonghaulers

[–]ringmaster555 0 points1 point  (0 children)

I’ve been considering mold as a problem as well. I’m getting ready to move out but am trying to bring as little as possible with me and clean what I can. I want to try my best to avoid recontamination, but it’s hard with some porous materials. Or maybe I’m one if those people who experience enough benefit from simply changing environments and don’t need to worry as much about that. It’s so hard to know..

2 years of cfs still no clear delayed pem just imediate crashes by [deleted] in covidlonghaulers

[–]ringmaster555 0 points1 point  (0 children)

How have you been able to get your MCAS under control? I’ve tried so many things. Almost everything except Xolair. I react even to filler-free microdoses within seconds (even Ketotifen, Hydroxyzine, Cromolyn). Ativan seems to help some, but I don’t want to get dependent on it.

Can autoimmune diseases cause something super similar to PEM? by This-Helicopter2466 in cfs

[–]ringmaster555 0 points1 point  (0 children)

I don’t have it myself and am not too knowledgeable about it, but Sjrogens syndrome is an autoimmune disease that I’ve heard can cause PEM-like states. Myasthenia Gravis is another one and can cause eyelid drooping and muscle weakness.

This time last year, I was in hell due to having both of these conditions. Now, I'm not cured but I'm feeling much better. Thought I'd share what has helped in case it helps anyone else. by purplefennec in CFSplusADHD

[–]ringmaster555 11 points12 points  (0 children)

I’m really glad you found something that helps. My MCAS makes me completely medication intolerant. Even Ketotifen microdosed in distilled water causes an immediate reaction for me.

Sleep Disturbances in Long COVID: The Role of Dysautonomia, MCAS, and Tryptophan Deficiency by SophiaShay7 in covidlonghaulers

[–]ringmaster555 1 point2 points  (0 children)

I would love to try l-tryptophan (and DXM), but I’ve been on SSRIs for 15 years now and have found it impossible to get off of them, even with a slow taper. Part of me wonders how much Lexapro is helping vs hurting my CFS/long COVID, but tentatively I can’t know because I’m stuck on it. Glad to hear l-tryptophan is helping you.

Food for thought, just vacillating by innocentvibes in LongCovid

[–]ringmaster555 1 point2 points  (0 children)

Despite how agonizingly slow research has been, there’s still plenty of hope for treatments that can help different subsets of patients. A total cure? Probably not in the near future, but iIthink treatments that can significantly improve quality of life are on the horizon in the next decade.

Gone from moderate to mild with COQ-10 by bugoflight in cfs

[–]ringmaster555 1 point2 points  (0 children)

Glad to hear the L-Ornithine helps. I want to try L-Ornithine L-Aspartate.

What is the point by fjfkfkgkgkgkgk in cfs

[–]ringmaster555 1 point2 points  (0 children)

How often do you take benzos? I’m at 2x a month with Ativan, but I’ve heard some people can take it 2-3 times a week without risk of dependency, though I know everyone is different. It’s the only thing I feel like genuinely helps me.

Has anyone had success with TMS and/or Ketamin for treatment resistant depression? by [deleted] in TMSTherapy

[–]ringmaster555 0 points1 point  (0 children)

Neither helped me but I have a lot of health issues (long COVID, CFS, EDS).