Pots And Tiredness

[Kujiforo]

I haven't been formally diagnosed with POTS or dysautonomia, though the doctors are finally swaying that direction after every other test has come back negative.

But let me tell you...... I am tired almost all the time, for no reason at all. Sometimes my strength is there for a bit, then zaps out of me instantly, as if someone has a syringe and is sucking it out of me as I sit there.

I am especially exhausted:

1. During mornings after I first wake up.

2. If it is hot or stormy outside.

3. After taking a shower.

4. After standing/walking for more than 10-15 minutes.

5. After eating meals (especially large meals).

Most people believe I do have POTS due to my HR increase WITH fluctuating blood pressures all the time. But no diagnosis, but if this is what I have, then let me tell you, the fatigue and physical AND mental exhaustion is real and can be almost disabling (in my case).

[Brye]

Joe I went through 30 doctors in a 4 year period before I found my current team, most doctors you see don't know much about it and are to busy to look things up. My current team is awesome, they listen to information I get from the internet, look things up themselves. They email me back when items they find. These types of doctors are worth their weight in gold!! If you don't like what your doctors has to say, or they don't want any of your input..........find a new one.

I'm only at 2.5 years of dealing with this and I'm still working on the perfect team. With the mito diagnosis then, how did your treatment change? It's been an insurance nightmare trying to see a specialist. There are no In-network providers. Not sure about the genetecist. Thanks for sharing your info!

Brye

[erik]

Erik, is it ever not hot in Hawaii?

Yeah, it often is hot! Especially compared to most places. Just depends on where you go... gain a little altitude and things cool down very quickly (and/or get wet) depending on time of day. Mostly it just changes constantly!