Can You Tell What Type Of Pots From Your Symptoms, Etc??

[mvdula]

Just wondering if any seasoned POTSies can help me out. I'm curious if my symptoms can give me or Drs a clue to what type of POTS I have:

**I do not get dizzy (I know this is supposed to be a hallmark of POTS)

**I have 'spells' (this is basically the worst (almost only) thing my POTS consists of) that are like dying/weakness/chest pain/revved up feeling/just overall awful feeling (or some combo of these) triggered by overdo, bending too much, hormones, etc. they scare me to death, and i really can't function even though i can still walk around during them...never heard anyone describe their POTS like this except me. oh, they last about 1-2 hrs...and come at the same time of day usually.....like between 10am-2pm - lunch is usually an issue but not other meals (also, they can start coming on if I don't go to bed early enough, like between 10pm and 2am) - something odd and circadian about that I think. Major spells are **** (not many of these anymore), minor ones are nasty and still make me depressed.

**I had a major heat intolerance, but that seems to be improved/gone. Praise God - it was ****.

**Walking around helps my spells. If I go up the stairs, then immediately sit down....I don't feel right, like my heart/breathing are not in sync and can't settle down. I need to walk around just a bit to basically manually shift down to a lower gear....odd?

**Klonopin helps a lot, but unfortunately, it kicks in right about when my spell would be winding down naturally. Makes for a nicer rest of the day/night tho I don't take it very often, no regular meds...

Anyone relate....or do these things add up to some clue??

[lieze]

This is how I feel too.

I was told I probably have hyperadrenergic POTS.

I do get dizzy though both things spinning feeling off balance and lightheaded usually not at the same time.

But have them check your serum catecholamine levels.

lieze

[mvdula]

Hi Lieze,

Bev @ Dr Grubb thought I would be hyper, but my catecholamines did not show that - I looked at results - they were very normal...so who knows...

[lieze]

I have a tendency to walk around during my symptoms too and it doesn't make sense. I've often questioned if I feel that badly why don't I sit down or lay down?

Many of mine hit at 10 am just like clock work. I made 3 trips to ER or called ambulance during that time when my symptoms were very intense, I never had any medical intervention besides an IV. All of my lab tests come back normal. The only thing I ever found was bp dropping or blood sugar dropping. I had the reactive hypoglycemia for a while but thank goodness that has passed.

Also the tachycardia and SVT's. No more SVT's thank goodness since the ablation. But the dozen or so I had were enough.

For some reason it seems like drinking cold water helps me. And I don't know maybe it's just something to do while I wait for the feelings to pass.

lieze

[flop]

Drinking cold water is helpful for relieving symptoms. When the cold water hits your stomach the body doesn't want the blood to get cool (as it would lower the body temperature) so it diverts blood away from the stomach - this leaves more blood available for our brains.

Flop

[mvdula]

I have never tried this during a spell (I really lose my appetite too), but I will. In the last couple years, I notice I never drink hot drinks though. Just don't like it. I drink everything with tons of ice.

[StacyRN]

Thanks, Flop!

What a great idea! I'd never heard that before, but it makes perfect sense, and I have noticed I feel better when I drink something ice cold!

How clever! You should put that on the dinet website under things that help!

Stacy

[daisy]

Just a word of caution about the cold water for those of you who have atrial arrythmias in addition to your POTS. Cold drinks can trigger those arrythmias caused by vagal stimulation (which I have a big problem with - if my vagal nerve gets stimulated, I lose rhythm - very inconvenient while going to the bathroom sometimes!). If I drink anything with ice in it, I will start to have afib or atrial tach episodes so I have to drink everything room temp. Not saying it will necessarily happen to everyone, but something to be cautious about.

[Mary P]

This is a great idea, Flop. I surely do need more blood flowing to my brain. However, I can't drink anything cold so this means I can't expect any improvement in my brain function. Oh well, nothing else is improving either.

Mary P