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22 And Starting To Get Better?


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I just turned twenty two and recently went to mayo for a check up. I saw the pediatrician who diagnosed me over five years ago. He says that I'm overweight and the only thing I should try for now is to work out, healthy diet, and to stay motivated. I did a tilt table test and my heart rate went from about 65 - 110. I was wondering how high does other people"s heart rate get? I still feel crappy all the time when i stand but he says I'm getting better. What do you all think?

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Well, just to give you an idea of another random POTSy.....

During my first tilt, my heart went from 85 to 175 bpm in 6 minutes. Then, they had to put me down. I was deconditioned during this tilt.

During the second tilt, my heart went from 65 to 140 bpm in 10 minutes before I started removing the straps myself. I don't last long on these tilts and won't be doing anymore. I was in great physical shape at the time of this tilt.

At home, my heart rate never gets above 100 bpm when upright because I am moving around. The tilt really induces my POTS. Although I am still not cured of POTS, exercise has been a tremendous help. It has greatly improved my quality of life by giving me more energy and increasing my upright time significantly. Can your pediatrician give you a referral to an exercise physiologist or someone who can put together an exercise program tailored to your needs? Even with the crazy heart rates on the tilt, my heart never exceeds 170 pm, even after a 6 mile jog. I think exercise can only help, as long as you get the clear from your health team. Good luck!

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I just turned twenty two and recently went to mayo for a check up. I saw the pediatrician who diagnosed me over five years ago. He says that I'm overweight and the only thing I should try for now is to work out, healthy diet, and to stay motivated. I did a tilt table test and my heart rate went from about 65 - 110. I was wondering how high does other people"s heart rate get? I still feel crappy all the time when i stand but he says I'm getting better. What do you all think?

Your heart rates are very similar to mine. On postures studies and TTT my heart rate starts in low 60's and upon standing/tilting it is in the 110-120 range. (every now and then the low 120's). I also feel awful. There is a theroy out there that if your heart rate does not go above 120 you do not qualify as POTS. I believe the Mayo Doctors follow this rule (Someone can correct me if I am wrong on this). However the Vanderbilt Dr.'s, where I went for testing, follow the rule that if your heart rate gots up by over 30 bpm on a posture study you meet the criteria for a POTS diagnosis. You are still showing a 45bpm jump which is substantial. It looks like your figures fall in the middle of this controversy.

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I've had episodes with heartrates in the 160's, but usually I only have a 30 to 60 beat per minute difference between lying and standing. I try not to rely on the numbers to validate how I'm feeling. If you're still symptomatic with fatigue, dizziness, nausea, or whatever, that needs to be acknowledged.

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Well I think it's great news that he says you're getting better.

I've had both my family doctor say she thought my POTS symptoms were stable-I guess because I can go for an office visit and have normal vital signs while there and be asymptomatic.

Also my cardiologist when I went for a follow up and had him review my catecholamines told me I might have POTS but he thought I was doing pretty good and getting better so?

These people don't see me in my everyday life and I'm a bit confused myself as to how much I am impacted by anything physical.

I have a lot of anxiety and have lost confidence to do normal things.

I do and have still had episodes either with my breathing or with racing heart or what seems like vasovagal like episodes but they all just feel bad are uneventful and I recover okay always.

I also seem to have panic attack like episodes and or adrenaline surges and sometimes not even a surge just a rise in adrenaline that makes me feel like I'm going to come out of my skin and feel on edge.

Often if I start feeling bad I check my vitals and they are totally normal.

Or if I do get a wacky reading it normalizes almost instantly.

I almost think we gotta keep truckin'. I don't know what else to do.

My family doctor had given me some Lexapro an antidepressant but she said even if I saw improvement with it there would be no way to know whether my issues were physical or psychological.

I refused the tilt table don't really want to do it.

Even if I pass it doesn't mean I don't sometimes feel bad and need to lay down. If I fail what does that mean. I still have tasks I want to accomplish and can so I need to keep trying.

Just keep on doing your personal best it's all we can do.

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