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» LymeNet Flash » Questions and Discussion » Medical Questions » Dysautonomia/POTS

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Author Topic: Dysautonomia/POTS
ladycakes
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I talked to my Lyme doc about a week ago about some weird symptoms that had popped up, and he thinks I may have POTS. So I'm seeing a cardiologist on the 13th.

In the meantime, I've been trying to keep tabs on my heart rate - we have a heart rate monitor, the chest strap kind. But it seems SO variable.

My resting heart rate, when I'm laying down, is pretty consistently at 65 or 70. Any other time, it's been all over the place.

Sometimes when I'm standing it's only at 95, sometimes it'll hit 160. After standing in line for about 5 minutes, it was 219.

For people that do have orthostatic intolerances, is yours consistent? It seems like even throughout the day, it'll vary from "pretty normal response" to "holy crap, that's high."

Posts: 306 | From Brownsville, PA | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
lax mom
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Mine is NEVER EVER consistent.

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ktkdommer
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So many variables so inconsistency is the name of the game.

Sounds like a beta blocker will help you get regulated. My son takes florinef for POTS also.

You must be exhausted with that high of a HR. Hope you get help soon.

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Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome.

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ladycakes
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It's super exhausting. And it's making it incredibly difficult to work, since they only time I don't feel dizzy is lying down (sitting up is better than standing, but I still don't feel great).

I had similar symptoms maybe a year ago, but not this bad. They had me see a cardio guy, and they did the usual heart work up (EKG, echo) and said I had a mild MVP, and to stay hydrated.

It's much worse now, and I'm hoping this cardiologist (different guy) is helpful. I'm so jaded about going to specialists :\

Should I mention to him that my Lyme doc brought up POTS?

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lax mom
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Yes! Mention that he needs to rule out POTS.

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luvema
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When standing mine is never below 130.
It can go up to 200 easily.

Things that have helped me

Compression Stockings
Drinking lots of fluids
Get electrolytes - coconut water is good.
Meditation, yoga..
Getting up slowly in the morning.
and taking beta blockers.

And yes, tell your cardiologist. Take some paper work with you about POTS since not every cardiologist knows about it.

One cardiologist told me your heart beats like that because you are out of shape. I am 123 pounds and 5'7 tall.
Always when I feel good I do some kind of exercise and walk around a lot. So, just take in information about pots with you just in case.

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ladycakes
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I've been drinking a lot of fluids, mostly water and gatorade. I had a friend recommend coconut water as well, but I really hate the taste of it :\

I've had some doctors that seem... maybe offended isn't the word, but when I bring in printouts, it's like "oh, here's some nutjob that diagnosed herself on the internet."

Yeah, I feel like objectively a lot of my symptoms make me sound just out of shape. But I went from doing an hour of Kenpo to having to take a break halfway up the stairs at home, in the space of a few days, so that's definitely not the cause.

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philly78
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I had paroxysmal SVT...along with POTS...where my heart rate would go as high as 180-190 and on the rare occasion, it would hit 200. I wonder if this is happening to you? 219 is pretty darn high.

I wore a monitor for 30 days and was able to "catch" these runs of SVT. This was all prior to my lyme diagnosis and I have actually gotten much better. Good luck! And I would definitely mention lyme to the cardiologist.

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When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal.

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ladycakes
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Am definitely bringing up the lyme. At this point, I bring that up pretty immediately, and if I get "the face" then I get another doctor.

I just don't have time for medical professionals acting like I'm a malingering hypochondriac or giving me a hard time about the choices my lyme doc makes in my treatment.

Posts: 306 | From Brownsville, PA | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
   

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