Periods where POTS isn't technically there, then a 'crash'?

[Terrier]

Hi all, I've put off asking about this for a long time as I have an annoying tendency to feel I have to figure everything out on my own, as counter-productive as this often is! I wondered if anyone has similar experiences or any input as to what might be going on. I'll give two examples:

A few months back I had a period of about a week where I was doing a litte better than normal in terms of sleep, anxiety etc. Out of curiosity I took my pulse after having been stood for over an hour playing guitar (I try to do this every day in the hope that it might gradually re-train my nervous system and also because playing seated actually feels worse for me in some ways). It was 68. My normal resting heart rate during the day is usually 60s or at times low 70s so this was obviously a bit of a surprise. Same thing the next day. I can't say I really felt different, but yeah, technically no POTS. Since I was sleeping better and doing better anxiety-wise I pushed myself a fair bit one day, went out socialising and felt comfortable enough doing it by my usual standards. However that night I didn't sleep all night and was instantly an absolute quivering wreck the next day with symptoms out the wazoo. Like my nervous system had just gone haywire. POTS 'numbers' were definitely back and I was in the midsts of one of my regular heavy bouts of PVCs (which run on a weirdly tight schedule of their own, something else I've never figured out. Once in this sort of state it tends to be quite a long and difficult road out.

Fast forward to this week and again, I was on a slight upswing so out of curiosity took my pulse after standing for an hour or so - 72. And again, after a slightly busier day (though not all that much different to the week or so before) a little bit of a meltdown came. A flurry of PVCs last night, a poor night's sleep and suddenly all my nerves are jangling and I'm full of anxiety. Really shivery and can't get warm despite being blasted by the central heating.

I don't know if these are POTS crashes exactly as I've never really figured out what that means to me, the descriptions I've read by others didn't quite fit. I used to wonder if my week-long bouts of PVCs every 4-6 weeks were POTS crashes. Occasionally they'd be precipitated by feeling generally 'urgh' and like I couldn't even muster the energy to get off the couch so I suppose it's possible?

It kind of feels like my body will go so far towards improvement then at some arbitrary point yanks it back and says 'No, you must be unwell!' It's incredibly frustrating and makes it so hard to keep your spirits up. I sort of go backwards and forwards between it being an anxiety thing or a POTS thing but really I have no idea so thought I'd put it out there. I have EDS too, in case that sheds any more light on it.

Any thoughts most welcome and thanks for reading!

[yogini]

You should always feel free to ask questions here. That's what we're all here for!  If you're feeling shy about asking, the search function in the forum is also handy -- most anything you can imagine is already covered here.  And there is also good info on the main DINET page. 

It's very, very common to have ups and downs with POTS.  Some days you feel worse than others.  Some days you might barely notice your symptoms or have no symptoms at all.  And other days or weeks you may be stuck in bed.

Sometimes there is an obvious reason for these changes -- the menstrual cycle is a common one.  If you don't sleep, get the flu/sick, feel stressed or do too many activities it may trigger you.  You will start to identify these causes, but sometimes it also happens with no reason.  

 

 

[Katybug]

I have "no POTS" or "low POTS" days, followed by "uber POTSie" days with no rhyme or reason as to why some are good and some are bad. 

The longest I've gone (for a while now) with good days is 5 days in a row. One thing I have learned is....if I get 2 good days in a row, don't get too big for my britches and over do it, or my streak of good days will come to a screeching halt. And it usually is not while I'm over doing it; it's usually either late that night or the next day.

If I'm having good days and stick to my same activity level, I can sometimes squeak an extra one or two days out of it. 

I am grateful for the days that are good and I have stopped anticipating that they will stay, so I don't ride the emotional roller coaster that causes. I take each day as it presents itself and do what I can to enjoy it....whatever "it" is.

Take care,

Katie 

[Terrier]

Thank you both for the replies!

That does sound familiar, Katybug. I think the first time this happened it was about a week I had where I felt like it was steady progress, finally getting somewhere then WHAM. No sleep and crazy anxiety. Similar to you there tends to be a delay on it too, I'll feel well enough while I'm pushing myself but then later it hits me in one form or another. Maybe it's a bit like if you're working and you've got an infection or something, you force yourself through the week OK then put your feet up at the weekend at suddenly the full blown illness hits you.

I guess it's the temporary lack of standing tachycardia I'm most curious about as I can't remember reading anyone having that in my time occasionally popping in to lurk on here. I still felt pretty awful by 'normal' standards but if I'd had a tilt table done on those days they'd have sent me home POTS-free. Of course when the POTS is acting as it usually does there are better and worse days within that too, but that's only to be expected.

[statesof]

Hi Terrie, I have found with myself that the way I feel is often times not related to my vital signs. So I can stand for 45 minutes and except for the first 5 minutes have a heart rate that is in the normal range but still feel bad. At the same time, I have had the phenomenon you describe as having a day where I push myself a big, typically its just a more active day though nothing crazy physically, and I can definitely tell the next day that I need to take it easy - my body just feels almost worn out physically.

[Katybug]

There's no telling what my standing heart rate may be even when I'm symptomatic....it could be only 10 points higher than my resting HR, or, it could 60 points higher than my resting HR. 

Early on in my relationship with my POTS neuro, he told me that once you have POTS, there is not necessarily a direct correlation between your HR and your symptoms.  For example, you could have a rise of only 20 bpm supine to standing and be symptomatic but you could later have a rise of 40 points and have the same degree of symptoms or less as the 20 point increase. Apparently there is an old study that shows that severity of symptoms isn't directly linked to severity of the tachycardia. I haven't found the study...just repeating what the doc said. 

Edited January 8, 2017 by Katybug

[yogini]

A good day or good week can give us hope, but I think true progress comes in the long run.  For me I had ups and downs, and over a very long period of time started to notice that my worst symptoms weren't as bad as they used to be.  I could do more and recover faster.   

[Terrier]

Interesting stuff, thanks everyone. I'd assumed that with POTS the HR increase would generally stay around or above a certain level but it seems like that's not necessarily the case.