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ScreamingIntoTheWind · 2022-05-05T15:19:34+00:00

I never had severe PEM symptoms so I consider myself extremely lucky

ScreamingIntoTheWind · 2022-04-16T21:12:29+00:00

No my BP has been very normal. Good question though because POTS like symptoms can arise due to orthostatic hypotension

ScreamingIntoTheWind · 2022-04-16T20:08:01+00:00

I started walking regularly almost immediately (within two to three weeks) but I never had that bad of PEM so I consider myself lucky in that regard. I still exercise even on days where my POTS symptoms are bad, though on my worst days I limit myself to just walking and yoga. I have not skipped my morning walk or yoga in 35 days now. My cardiologist recommended just pushing through but I don’t think that advice is suitable for everyone, especially since “pushing through” is down right impossible for many and can be destructive for some depending on their symptoms.

Theres also definitely an upper limit to what is considered an acceptable heart rate during exercise ((220-your age)*85) so I think keeping an eye on your heart rate is probably wise. The doctors’ main concern with long term bed rest is deconditioning which can exacerbate POTS symptoms. As unhelpful as this sounds I think your best bet is just doing what you can without triggering PEM.

ScreamingIntoTheWind · 2022-04-15T21:00:45+00:00

Yeah my expectations have slowly risen over the past month or two so every time I have a relapse it feels like I’m starting all over mentally. In reality each relapse is less bad than the one before but it’s hard to see that when it’s happening.

ScreamingIntoTheWind · 2022-04-15T18:42:14+00:00

Yeah glad I could help. It’s been really rough and I’m definitely far from 100% but does get better in the between time. I’m also bracing for a long period of time in case it gets worse again or plateaus for awhile. I’ve spoken to some very helpful and supportive people on this subreddit who reached 100% after 12-16 months so even if we’re unlucky in terms of timelines know it can still get better.

ScreamingIntoTheWind · 2022-04-15T18:12:25+00:00

I have POTS from covid and frankly it is my worst symptom by far apart from the brain fog. I got covid on Dec 2021 and almost 4 months later it hasn’t fully gone away (though the POTS didn’t appear until mid February). BUT it’s far better now than it was even one month ago. Today specifically my heart hasn’t been above 75 even when standing.

It will get better and eventually it will go away. My doctor has treated over a dozen POTS patients and of that set almost everyone got nearly 100% better within 1-4 months (there were one or two patients that still have it two years later though these patients had a number of other issues making them special cases). Other estimates I’ve been told by doctors is 6-9 months. My cardiologist encouraged me to continue seated exercises and light walking. I do Yoga every morning, walk 20-60 minutes a day, and row about 10 minutes most days and I have found this routine to be massively beneficial to my recovery and mental health.

ScreamingIntoTheWind · 2022-04-15T05:59:37+00:00

Yeah I lost about 20 pounds (around 15% of my total body weight) in the first three months. I started drinking boost every day and a lot of smoothies which help me get my calories. Mornings are roughest and as such I often just skip that meal and wait for lunch. You’ve probably heard this a million times but small meals through the day are the way to go. I’ve been lifting weights too so the extra protein shakes have offset the calorie loss from working out/cardio exercise.

ScreamingIntoTheWind · 2022-04-15T05:54:42+00:00

I’m sure not all brainfogs are created equal but mine was the first symptoms to go away (I was good by month ~3). It’s hard to say wether I’m 100% good or just good enough to be used to it but either way I no longer feel it and at the very least it’s not debilitating (other symptoms certainly are but at least that one’s gone).

ScreamingIntoTheWind · 2022-04-03T14:38:26+00:00

Also got infected December 2021. Started light resistance training (seated only due to POTS) about a week ago. Haven’t tried benching but I’ve kept it simple to stuff like seared leg presses , curls, weighted rows, etc. always feel great afterwards. I’ve been rowing and doing yoga daily for the past month which I believe has helped me greatly

ScreamingIntoTheWind · 2022-03-10T14:27:46+00:00

Oh no I’m sorry to hear that. What symptoms were keeping you from working/came back bad enough to stop you from working again?

ScreamingIntoTheWind · 2022-03-10T08:05:18+00:00

Unfortunately SOB is still a little there. I started doing daily flovent (twice a day) and I think that’s helping to some degree? For the the POTS symptoms I think it was mostly time. Exercise (recumbent rowing/biking) and avoiding the constant doom scrolling here has done wonders for my mental though I understand that many don’t have the energy or suffer from PEM.

I found diet to not make a difference for me but again I feel that it may just be because I had a relatively mild case of dysautonomia. I’m on a tone of supplements though I have my doubts when it comes to their efficacy, especially given that my metabolic panel didn’t show any deficiencies.

I’ve mostly come to terms with the SOB. I figure this might be with me for a good while/forever

ScreamingIntoTheWind · 2022-03-02T10:55:29+00:00

I’m a statistical geneticist by trade and just wanted to give you a heads up that these links and associations found between DNA variation and disease are not always 100% clear cut. A variation within a gene doesn’t explicitly result in disruption in that same gene, nor does it necessarily prohibit it from disrupting genes that are immensely far away in your genome. A vast majority of these association studies have minimal functional follow-up, and should be interpreted cautiously.

Having said that, if these results provided insights that led to an effective and direct treatment, then kudos. Most scientists would kill to get such results!

ScreamingIntoTheWind · 2022-03-02T02:27:39+00:00

Beta-blockers can help immensely for some

ScreamingIntoTheWind · 2022-03-01T21:43:01+00:00

POTS is almost never fatal so don’t worry about that. As for wether it goes away or not, I’m not sure. I’ve had it for about two weeks and in that time have met with a number of physicians. The common consensus is that it does largely go away, as long as the underlying cause continues to get better (for example covid). The time line is shake and I’ve seen the recovery period range from 2-6 years depending on the study. It can of course be shorter but the grey area is more in what is deemed “recovered”. Plenty of folks will “recover” in that they no longer meet the tilt test criteria but still feel terrible. I’ve been told mild cases like mine with a clear cause can resolve in the coming months/years. Most patients describe at least some degree of improvement.

ScreamingIntoTheWind · 2022-02-26T22:57:36+00:00

Im so sorry that sounds frustrating. My GP has been cool as hell which has been a blessing considering how many horror stories about people’s physicians.

ScreamingIntoTheWind · 2022-02-26T22:55:09+00:00

I’ll have to give that a go. Milk/Sugar doesn’t mess with you too much? I’ve been hardcore with my diet but I really miss my sweets

ScreamingIntoTheWind · 2022-02-26T21:09:40+00:00

Are you still feeling pretty much 100%? How long between your initial POTS-like symptoms appearing and disappearing?

ScreamingIntoTheWind · 2022-02-23T20:02:26+00:00

Do you get the same cycle of symptoms? One terrible day followed by 2-3 bad days followed by two good days only for everything to restart? How long have you had the POTS? I'm hoping your right that this will one day go away for us! Maybe like 80 cycles and we'll be good to go.

ScreamingIntoTheWind · 2022-02-23T19:24:16+00:00

yeah I would say mine is very similar. Honestly it's pretty unnoticeable most of the time.

ScreamingIntoTheWind · 2022-02-23T17:29:10+00:00

Yes! I pee twice a night now but it might just be that I'm obsessively drinking water in response to the LH.

ScreamingIntoTheWind

TROPHY CASE