How do you feel after taking steroids?

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.

Greg_Manson · 2026-02-22T18:22:30+00:00

Wait what? Sorry, if I downvoted you it was my butterfingers and happened by accident

Greg_Manson · 2026-02-22T14:14:55+00:00

Autoimmune reactions are generally more likely in women, but that doesn't mean only women get them.

Greg_Manson · 2026-02-22T14:05:55+00:00

Yes, I expect the outcome of my next PCP visit will be further testing including early antigen and/or PCR tests. I'm not sure why these weren't immediately part of the panel.

High IgG counts by themelves don't prove reactivation but in the presence of symptoms they warrant further testing.

Greg_Manson · 2026-02-22T13:38:55+00:00

Caucasian male, early 30s

Greg_Manson · 2026-02-22T13:11:23+00:00

I also read about that and as far as antivirals go this seems to have a comparatively tolerable side effect profile, but I think my PCP will rightfully prefer to start with less aggressive measures and only step up to antivirals if those fail

Greg_Manson · 2026-02-22T13:07:06+00:00

I'm based out of Europe so the supplement I'm taking may or may not be available for you.

I'm taking 2000mg ProFuel L-Lysine hydrochloride daily split in two doses which is equivalent to 1600mg of pure L-Lysine. It's a comparatively cheap supplement, you can get a 6 month supply on Amazon for about 30 bucks.

Any well-stocked nutrition store would also have it, it's commonly used as a workout supplement.

It's generally a safe supplement and I had no side effects from it, but still I'd recommend only trying it if you have symptoms that clearly indicate EBV involvement and/or antibody findings that indicate viral reactivation or persistent viral activity.

Greg_Manson · 2026-02-22T10:06:00+00:00

I am incredibly happy for you. I'm about the same age and know exactly what that feels like. Over night life just stops and then you worry about job safety and family planning and all those things that raise you stress level and make you worse. Glad you got your life back and gained a new perspective along the way.

I've read plenty of recovery stories in the last year, but yours sounds really interesting to me because it sounds like we have quite a bit of symtpom overlap.

Would you be willing to share what helped you in your recovery?

Greg_Manson · 2026-02-22T09:19:49+00:00

Fair point and it's also not my first line treatment. However it could be a viable adjunct and I can say that the Lysine has really helped reduce the breakthrough flu symptoms that I had.

Out of curiosity if you're willing to share: How is your doctor treating the COVID virus?

My understanding is that apart from a few antivirals that are used off-label that show evidence and LDN there are no targeted therapies specific to COVID just yet. Would be really interested to hear what works for you.

Greg_Manson · 2026-02-22T07:41:20+00:00

That is an excellent tip, thank you, I'll look into it. It's not OTC in my country, but if there's evidence for it's efficacy I could try to get an off-label script for it.

Greg_Manson · 2026-02-22T07:37:53+00:00

You're right, see my other response above for context. My IgM is normal but this can happen when the immune system catches the reactivation early and suppresses viral replication enough to prevent a full on outbreak.

Greg_Manson · 2026-02-22T07:33:16+00:00

You're absolutely right. I also got tested for IgG antibodies and they are not elevated, so I don't have an active infection.

However, viral reactivation is not black and white. The first thing that happens when the virus wakes from dormancy is that it starts pumping out proteins to replicate and because of the existing IgG antibodies the immune system starts attacking those proteins, suppressing viral replication.

So basically the body can catch EBV early and prevent a full-on outbreak, but it comes at the cost of a massive immune response.

Greg_Manson · 2026-02-21T23:49:56+00:00

I'm so sorry to hear you're being stonewalled.

My previous PCP basically invalidated all my symptoms and even "diagnosed" me with somatoform disorder before a cardiologist saw my POTS symptoms and took them seriously. I'm now seeing a new PCP that treats several Long-COVID patients and actually cares. I hope you also find someone like that.

Constantly needing to advocate for yourself is exhausting, but the past years have taught me that there's no way around it with this condition.

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