Today's a high HR day... Anyone else?

[RyeRyeBread]

I woke up this morning, put on my HR monitoring smart watch (been trying to better monitor my HR, for pacing + OI purposes), and realized pretty quickly that today was not going to be a good day - in terms of OI symptoms and a high HR.

This has happened a few times before - some days my HR was pretty level, very seldomly jumping above 125; Others, my HR jumped to 135-145+ just walking slowly around my kitchen.

Today is one of the latter; High HR jumps with seemingly no cause, and OI symptoms (dizziness/lightheadedness, "woozy"feeling, more noticeable shortness of breath, and an almost anxious feeling [i have anxiety but it isnt the same feeling, its like a foreign anxious feeling(?)] etc.) also experienced a weird poking type pain under my left shoulder blade area, but only when my HR was up to around 136ish (checked once i noticed pain), and went away as soon as i sat down and it started to lower.

Does anyone else experience this?
Could this be related to POTS?
*I plan on seeing a new doctor soon, and plan on looking into OI stuff, any recommendations for how/what to bring up?

 

[SNT Gatchaman]

No clever insight, but this could be a worsening of POTS "alone" or a prelude to a crash with more widespread symptoms. Perhaps focus on rest and pushing fluids, as that has helped me with my POTS-predominant symptoms.

 

[RyeRyeBread]

No clever insight, but this could be a worsening of POTS "alone" or a prelude to a crash with more widespread symptoms. Perhaps focus on rest and pushing fluids, as that has helped me with my POTS-predominant symptoms.

Thanks, yeah rest and hydration seem to be the best things to do right now

 

[Haley]

Yep. If my heart rate gets above 120 just getting up and making a cup of tea, I know it's not going to be a good day. I dont know if it's the CFS or POTS that is the trigger, but I find they feed each other and I end up in a bit of downward spiral - increased heart rate equals more crashy, which equals heart rate being more volatile, which equals more crashy... It's always fun

Rest, hydration and a ton of salt

 

[Jyoti]

Yeah @RyeRyeBread -- I am having one of those days (actually a week) myself, so I read your description and it was pretty much my reality today. All my condolences. It sucks.

Fluid, rest, salt (and if there is no issue around high BP, the recommendation for POTS patients ranges from 3-10 grams) so you can feel free to eat a fair amount, and finally, don't freak out if you can help it. That anxious feeling is a typical POTS symptom when upright and exacerbated. Sometimes having that 'physical anxiety' causes me to lean into mental anxiety and that only raises the heart rate.

*I plan on seeing a new doctor soon, and plan on looking into OI stuff, any recommendations for how/what to bring up?

As much info as you can gather is helpful in terms of symptoms, when they occur, how often happen, how long it takes for them to start when you stand (on a good day, on a bad day), etc. Think about all the possible POTS or OI symptoms, including GI, headaches, urinary, sweating issues (hypo or hyper) when you make your lists.

If you haven't done a poor man's tilt table test, I recommend doing a couple of those and bringing the results. If your new doctor is halfway decent s/he will take those results into account. If you are really tippy, have a friend help you with this; it isn't safe if you are alone and prone to fainting.

Here is one set of instructions from the Bateman Horne Center: https://batemanhornecenter.org/assess-orthostatic-intolerance/

And here is what I have done many times: Do the test early in the morning. You will need a BP cuff and a stopwatch (smartphone works fine). Take your BP and pulse lying down. Stand and start the stop watch. If you need to, lean your shoulders against a wall as in the Bateman Horne directions. I usually just stand, but have to be careful not to do instinctive muscle clenching to keep the blood flowing--that distorts the results.

Take BP and pulse at 3, 5 and 10 minutes. Obviously, recording your results.

This usually totally drains me and I need an hour or so to recover. I would not try it on a bad day, though your results will be more compelling!

Keep us posted! And take it easy for now.

 

[RyeRyeBread]

@Jyoti Thank you very much!!