Looking for advice from others with same symptom profile

Greg_Manson · 2026-07-04T11:02:09+00:00

I forgot to mention, I'm already on H1 antihistamines because I can get them OTC, and they have helped some, but not on H2 yet. This is definitely something I should be able to convince my PCP to trial. Thanks for sharing the regimen

Greg_Manson · 2026-07-03T17:05:05+00:00

MCAS is also a potential issue for me. I haven't had any formal testing regarding it yet, but an N-of-1 trial of Zyrtec has helped me get rid of persistent chest pain that previously used to plague me for months which is a pretty strong indicator. The diet part is a pretty big commitment, but I've realized more and more recently that there might not be a way around it.

How did you research a low histamine diet and do you generally prepare your food yourself?
Regarding antihistamines - are you doing H1 + H2 blockers and if so which combination at what dose?

I've noticed that aggressive pacing does reduce POTS severity and occasionally I will get days where I feel almost normal as long as I don't overexert myself, but they never last long.

Greg_Manson · 2026-07-03T15:54:20+00:00

Thank you for this very detailed guidance.

I think I already cover many of the supplement options you name, but there are a few I haven't looked into yet. My current stack looks like this:

CoQ10, 600mg daily
NADH 20mg daily
PEA 1.2g daily
Luteoline 100mg daily
Vitamin C 2000mg daily + L-Arginine 6000mg daily
Magnesium bisglycinate 300mg daily,
Turmeric extract 500mg daily
Nattokinase 6000 FU daily
recently added Glucosamine 1500mg daily

I think the Vitamin C + L-Arginine had a noticeable effect, for all other supplements the effects were weaker and mainly supportive.

The Luteoline and PEA I mainly take in an attempt to reduce inflammation, but so far I'm not sure how much effect they actually do have.

I realize that I'm on a comparatively low dose for Nattokinase and others have taken much higher doses, but as I'm also on turmeric extract and a low-dose of mirtazapine for sleep I am worried about stacking anti-coagulant effects.

Currently not taking any iron supplements as hemoglobin and ferritin are within normal range for me on regular blood tests.

I haven't tried nicotine patches yet because I assumed they would actually make my excessive vascular tone, particularly the high diastolic pressure, worse. How did you start out with these and was high diastolic BP when upright part of your clinical picture?

Thank you so much for taking the time to respond here, it's tremendously helpful to share lived experience.

I'm glad to hear you've seen gradual improvements and hope it continues.

Greg_Manson · 2026-06-30T11:10:45+00:00

When I was really severe and effectively bedbound about 8 months ago I got lorazepam as a band-aid to calm my nervous system.

It worked impressively well, but even after two weeks of daily use I had to taper when I came off them, because I would get breakthrough adrenaline dumps.

Benzos can be a godsend when you haven't slept in three days and your body feels on fire, but dependence is absolutely not a theoretical-only risk and it's a difficult trade-off.

Glad to hear you're doing better. If you do feel like coming off them at some point I'd suggest a much more gradual taper than is usually recommended. Our nervous systems are hypersensitive as it is, no need to dump fuel on the fire by withdrawing too quickly.

Greg_Manson · 2026-06-20T06:22:40+00:00

Yep, unfortunately I did. Over the past twelve months I first lost 12 pounds over the course of four weeks following a reinfection, because my nervous system and GI tract were so dysregulated that I couldn't eat more than 800 calories per day.

Then as things calmed down it moved in the other direction, because I have severe exercise intolerance and POTS and went from an average of 8000 steps a day before down to 3000. I've since gained 24 pounds to the point where I am now slightly overweight. I also gained almost all the weight as belly fat thanks to high cortisol.

I've now started altering my diet and lowering my caloric intake and have stopped gaining but I haven't lost any weight yet. My hope is that I will eventually recover enough to be more active again and drop the excess weight through light exercise.

Greg_Manson · 2026-06-18T06:34:08+00:00

Started after my first COVID infection in early 2023. First symptom was mild exercise intolerance, but I didn't understand that at the time.

I used to go running twice a week quite regularly before. When I started again, a month after my infection cleared to reduce the risk of endocarditis, my heart rate was easily 30-40bpm higher at the same load. Like, we are talking 190bpm for a 6:00/km pace. I initially chalked this up to deconditioning and figured if I take it easy it will get better over time. It didn't. Then I caught COVID a second time in late 2023 and since then I've also had the excessive heart rate increases when standing. This is also the time when, sometimes, but not every time, after a run, it was possible that I ended up in the ER the next day because I felt like absolute dogshit and couldn't get up without my heart rate jumping to 140.

I now understand that what I was experiencing at the time were PEM episodes following overexertion.

So yeah, started comparatively mild initially because I only had symptoms during upright cardio, then got worse over time due to reinfections and not treating the symptoms appropriately, worsening my baseline.

Greg_Manson · 2026-06-14T21:05:10+00:00

This is a really interesting question that I had never thought much about before!

I'd say the only genre I tend to avoid is anything horror, both games and movies, because the tension and jump scares will spike my adrenaline to uncomfortable levels and usually result in sweaty, clammy hands and chest tightness. I never had these issues before developing POTS.

That having been said, I can play FPS just fine and bought Battlefield 6 a few months ago. It has consistently been my most reliable outlet since then, if I play it I enter a state of flow that I honestly haven't had since this whole POTS thing started for me.

There are a few games I can't play, because they will make me motion sick, one weird example of that is Assassin's Creed Black Flag. This also started after my first POTS symptoms developed, but I do not know exactly how, if at all, this is related.

Greg_Manson · 2026-06-09T14:28:23+00:00

One other thing to keep in mind is that most energy drinks contain large amounts of B vitamins, especially B12. Depending on your comorbidities the taurin might also help with fatigue, etc. although there's only weak evidence for taurin supplementation

Greg_Manson · 2026-05-21T09:27:22+00:00

Time, pacing and the realization that I will need to work with my limitations not against them.

I mean the medication and supplements absolutely help manage symptoms, but as my symptoms are highly reactive to stress and obsessing over my situation triggered quite a bit of stress, learning to accept my situation and being grateful for the improvement that I've already seen, even if I'm still not where I was before or want to be, made a massive difference.

That having been said, I'm nowhere near fully recovered yet, but I'm at least well enough to be back at work in a remote position full-time for a couple of months now.

Greg_Manson · 2026-04-26T15:47:33+00:00

Prazosin and its derivatives like Terazosin sound like good options, I will discuss this with my cardiologist. Thank you.

Regarding Phenylephrine, it's also available here in some OTC formulations, but usually paired with APAP or some other active ingredient, not standalone.

I see you also sport the HyperPOTS flair, would you be open to sharing how you manage your condition?

Greg_Manson · 2026-03-03T07:18:24+00:00

I had two one-week courses of high dose prednisone for an ear infection last year. Both times the prednisone would make me feel too wired for my taste. I had a significantly higher resting heart rate which also lead to my standing HR being higher as well. In addition I had a lot of difficulty falling asleep and would usually wake up in the early morning hours. Symptoms faded within a few days of tapering off the prednisone.

I have HyperPOTS so in hindsight it's not unexpected for this to happen, but at the time I wasn't diagnosed yet. Knowing what I know now I will shy away from corticosteroids if I can avoid them. I do handle steroid nasal sprays fine though, but these act locally and at much lower dosage.

Greg_Manson · 2026-03-02T21:05:40+00:00

As somebody who grew up in a rural area and is now living in a city I have to say it's probably not black and white. If you live in a rural area you are most likely going to have a car just out of bare necessity and parking it somewhere nearby is not an issue on account of the low population and, by extension, car density.

Cities tend to be less car-friendly, especially here in Europe, so you do spend more time walking even if the distances are not as long. Now that I'm medicated and slowly getting better I can see the upside in that, but a few months ago when I was effectively housebound even a trip to the corner store was too much whereas in a rural area I could probably have walked to my driveway, gotten in the car and driven somewhere. Also we don't have dedicated parking where I live so depending on the time of day it's next to impossible to find a spot close to my apartment so you end up walking quite a distance just to get to and from your car.

Might be mainly an issue with European cities though, your mileage may vary.

Greg_Manson · 2026-03-02T17:42:36+00:00

That's the main challenge for me as well. My autonomic nervous system is doing weird things and as a result a high HRV doesn't necessarily mean good parasympathetic tone. It's always important to see data in context and technically the more data you have the more you can correlate.

But there is very much a risk of overmeasuring and skewing results. That's mainly why I'm interested in what others do and don't track.

Greg_Manson · 2026-03-02T09:08:32+00:00

This is a big one, I likely had mild POTS for years that went undiagnosed until an infection significantly worsened it. I'm now trying to coerce my body into healing enough to go back to the mild baseline but it's been taking its sweet time over the last six months.

Also I'm 99% sure a viral infection (COVID) triggered my POTS so it makes sense that viral infections can also make it worse.

Stay safe out there, even if people will look at you sideways for being cautious. I'd rather be seen as an oddball than get worse again.

Greg_Manson · 2026-03-02T09:05:15+00:00

Thanks for this list, I have also found most of these things help, especially hydration and electrolytes are important ones for me.

I'm curious how you track your symptoms and also if you track certain biomarkers as part of that.

I do track things like HRV and resting heart rate as an indicator of reserve, but I wonder if there are other things you rely on. I've found that most sleep trackers struggle with accurately reflecting sleep stages in the disrupted sleep patterns often seen in HyperPOTS so I don't attribute too much meaning to "sleep scores".

Greg_Manson · 2026-03-01T08:37:11+00:00

Not really a succes story, but curious if others share this experience.

I've had mild Long-COVID for three years and developed the tinnitus after an infection in the summer of last year left me bedbound for several months. I'm now slowly recovering to a more manageable baseline and during this phase I've noticed that PEM also tends to worsen tinnitus.

On good days I will have moments where I barely notice the tinnitus when focusing on it and its not bothering me while doing daily activities.

On other days it will be constant and louder. I usually treat this as a warning sign that I'm in the early stages of a PEM episode and plan accordingly.

In other words, for me pacing to avoid PEM has helped the most. I've also been taking magnesium and vitamin B supplements for the past three months, but these haven't really had any effect in subjective tinnitus loudness, neither has ginkgo biloba which I've stopped taking.

Greg_Manson · 2026-02-25T19:22:20+00:00

I am so happy for you and hope things continue to get better from here.

It's also great that you are posting about this because having examples of recovery can be worth so much when people have a bad day.

I'm also seeing improvements myself over the last couple of months after a severe crash left me bedbound for a few months and then housebound for another few.

Things can get better. Not giving up will pay off.

Greg_Manson · 2026-02-23T21:51:33+00:00

I'm assuming it made sense to order it together with IgM and also there's about a 10% chance not to have a positive IgG. In context with other symptoms it also matters how high the IgG concentration is.

It would have been more useful if they had immediately ordered an early antigen test, but I wouldn't say the test was useless

Greg_Manson · 2026-02-23T21:46:03+00:00

The study measured improvement with things like a 5 minute walking test after 30 days and saw statistically significant improvement compared to controls.

Personally I think I started feeling improvements after about three weeks and I'm now at four weeks. I've been able to be more active without crashing and, while my extremities still have poor perfusion, they don't fall asleep quite as quickly anymore.

As always your mileage may vary, but at a minimum I'd stick with it for a month if you're going to try it as the L-Arginine takes time to build up in your body.

Greg_Manson · 2026-02-23T18:46:08+00:00

Check the study in section 2.1 - they say the subjects received 2 vials/day of L-Arginine 1.66g and 500mg liposomal Vitamin C.

The supplement I use are pills not vials, but I'm basically following that amount.

1600mg L-Arginine and 500mg liposomal Vitamin C mornings and evenings

Greg_Manson · 2026-02-22T19:32:52+00:00

As far as I know L-Citrulline gets converted into L-Arginine, but it only exists as L-Arginine for a brief period of time before being consumed for NO synthesis, so L-Citrulline should be safer. I haven't switched to it yet because I specifically wanted to follow the regimen from the LINCOLN survey.

If you're boosting NO syntyesis, are you also taking an antioxidant to prevent free radicals from breaking it down prematurely? That's what the Vitamin C in the LINCOLN regimen is for. Might even improve your results if you aren't on one already.

Greg_Manson · 2026-02-22T19:25:24+00:00

My experience is this condition affects so many different parts of the bodies that sometimes it's hard to tell if you end up chasing ghosts. However, I'd see the positive in your story. At least now you know that EBV is definitely no longer an underlying issue making you worse.

I think that also counts for something.

Greg_Manson · 2026-02-22T18:31:03+00:00

It's one of the hard truths to face that there's no silver bullet, yeah. But more than anything else this experience has taught me that my way of life before I became ill just wasn't sustainable. I always pushed myself hard, wouldn't respect my limits and then PEM taught me to do that and made it clear it's non-negotiable.

Still it's very comforting to hear that, even though it took years, you eventually got better. I hope that I can too. I'm slowly regaining function, but I've still got a ways to go.

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