Variable Symtpoms Every Day? Do You Notice Anything That Causes This? Need Help.

[iheartcats]

Hello,

I seem to be having more up and down days. Mornings are usually the worst, not always, but usually. Yesterday I was feeling 'ok' and had a heart rate that varied from 85-120 depending what I was doing. With POTS, this is fine for me. At this point that's a great rate and I'll take it. I wish it could be better, but at least I'm 90% functional.

Today it's been varying 105 - 150 depending what I'm doing. This is just a day later. I've taken my same meds, drank a lot of water, forcing food, etc. Having a 'sitting' HR of 100-110 gets tiring at work and getting around at 135-145 isn't pleasant. I'm much more tired & fatigued today due to this.

I can't believe it can vary so much one day to the next when I've not changed my routine! Lately I seem to go for a day or two being 'okish' and then a day or two being very 'Potsy.' I know on my OK days I can hit 150-160 going up stairs, etc. but that's expected. It's over pretty quickly. But days like today where I'm resting around 100 and around 135 walking are frustrating.

I see my doctor next month, but last time we talked he said that's really 'just POTS' - we try increases with Midodrine and see if that helps. I'm at 7.5 in AM now and it seems to help some days more than others. He expects to see some fluctuations, but they just seem to have become more erratic lately.

And of course it's coming up to the holidays which I'm sure is taxing on a lot of us already. So great timing for my days to start being so variable.

Any advice? Anyone keep a log? I'm thinking I might do that in the couple weeks before my appointment.

I'm just so frustrated and tired and not working isn't an option right now so I need help keeping the 'worst' days under control. If it's above 150 for too long those are the days I just can't make it to work, but fortunately I've been avoiding those lately...but with things flaring up and down I'm concerned.

Thanks for listening.

[Guest tearose]

I've been going through a similar issue. Higher than usual highs and needing more rest. I have noticed several things are contributing. First, I'm sneezing more so I wonder if I've been fighting a non blossoming cold. Second, I was trying to do more exercise and once my heart flares up super high it can take days to get it back to not sensitive mode. And then third, it is freezing cold to my body and I have to relearn how to dress for the cold. The cold wears me down and makes my body work harder to maintain core heat, so I can tire faster. Then lastly, since I am drinking more, I am up at night more too.

I think I just keep trying all things and somehow, I find myself back functioning in a more tolerable heartbeat range.

Thank goodness for my battery heated motorcycle vest! No motorcycle, just the vest.

I am sorry you feel lousy and are struggling. Hang in there and keep looking for answers.

best regards,

tearose

[ajw4790]

Yes, symptoms are variable from day to day... It is annoying to not know what to expect. I think the weather (cold, snow/rain, barometric pressure) and hormones have a lot to do with the day to day differences. There is also always the differences with hydration, meds, food, sleep, stress etc. But, you noted that for the most part those have been about the same.

Also, could it be from you have the weekend to "recover" so Monday could be a little better than Tuesday? Or the weekend is better than days you work?

Hope that your are able to get some rest and tomorrow is better!

[MelissaCrystal]

It makes it SO frustrating to try to explain to doctors exactly what is going on when it isn't consistent. That's usually when they suspect me of somatization (sp). I feel for you, for sure.

I have not found any clues about what exactly causes the changes in my symptoms except that I need 10 hours of sleep and many many high protein meals throughout the day (and I have to avoid sugar).

[iheartcats]

I wish I could figure it out - I'm sure we'd all be pleased!

Well, this week has been especially stressful (today which is unfortunate because I started off horrid and then had many outside-of-my-control stress factors pile-up).

So I'm a mess tonight and I need to get things under control. My HR has been way too high today and I'm worn out. I usually do not get many gastro issues, but things are so bad I'm having those!

Under normal circumstances, a person would be stressed and feel unease, maybe stomach/gastro issues, etc. But with POTS? It just makes it unbearable.

I'm doing what I can. I am telling myself I can get through this, but boy, that's hard sometimes. If this was under my control, it'd be easier. But when something is completely out of your hands, there's only so much you can do.

And POTS is making it worse.

I'm at the point where I'm wondering if depression can have an affect on POTS? I have a hard time admitting it, but the combination of POTS and other factors are really getting to me. Without POTS I could deal...with POTS..., well, things are hard enough. I don't know if this is just a low point or if I am depressed.

Sorry to get off track, I'm just trying to really figure out why I've taken such a turn for the worse. And I am finally starting to admit to myself I may be depressed (on top of life stress, work stress, dealing with a chronic illness, etc).

Thanks for all your support.

[mountainsunflower]

My symptoms are also very inconsistent, some days worse then others. Some times i know exactly why, others i have no idea. It is so frustrating and i agree, so hard to explain it to doctors-

[dawn]

My husband refers to my symptoms as the "spinner card."

I have tried many times to find a reason why some days, are so much worse but, have not been successful.

I have to learned to just go with it. It is hard.

Mornings are always awful for me, that doesn't vary. I never make an appointment until after 2:00 pm.

Dawn

[ramakentesh]

i can predict my episodes quite well. Without fail, every time i go on holidays I will get a mild attack of sudden tachy and dizzines the first day of my holiday and then my symptoms will pretty much disappear, only to return worse than ever when i return home. They usually dip for a month or two then gradually improve back home until my next holiday. Weird eh?

[iheartcats]

i can predict my episodes quite well. Without fail, every time i go on holidays I will get a mild attack of sudden tachy and dizzines the first day of my holiday and then my symptoms will pretty much disappear, only to return worse than ever when i return home. They usually dip for a month or two then gradually improve back home until my next holiday. Weird eh?

That is bizarre! POTS is so frustrating.