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What Is Your Worst Pots/dysautonomia Symptom?

What is your WORST POTS/dysautonomia symptom?  

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Fatigue, pain. periphal neuropathy (feet, legs, hands, arms, trunk and face).

Hi Nene,

I do have (small fiber) peripheral neuropathy in my legs, confirmed by skin biopsies.

May I ask you - which kind of symptoms do you experience from peripheral neuropathy in hands/arms, trunk and face...? And how did you get your re diagnosis for these parts of the body?

Best wishes!!

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the BP and cardiovascular issues are my worst. we've got the horrible tachycardia and palpitations treated with a hefty beta-blocker. But now i'm left with what seems like reasonable bp when laying down that becomes the wonder that is the BP rollercoaster when I stand up and move about. On excellent days (I HAD 2 in a row this WEEK!!! YAY!!!!!) I can go all day long and my bp, heart rate, and blood pooling issues are in check with just my beta-clocker, compression socks, diet, and more gaterade than most professional athletes drink in a day. Bad days (I've had no truly horrible days this week, again that's an OMG YAY) i'm relagated to the couch or bed if I can't make it to the couch safely. We started me on Florinef yesterday and my lightheadedness has come back in a big way. Hopefully as I continue the florinef that'll go away.

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  • 3 weeks later...

The symptom that has effectively taken me out of my life has been the fainting/near syncope. I have not been able to make it longer than 2 weeks without an episode in over a year.Don't drive,work or go anywhere alone. The tachy feeling and fatigue are close seconds . Wow it is amazing to me still how individual symptoms can vary and what we can learn to live with!

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wish i could just pick one but i have them all everyday ..but right now having terrible abdominal problems and having to have surgery first of may due to no motility in my large intestine due to dysautonomia so probably that right now..we can't just have one or two symptoms to deal with we have to have about 30 or more to deal with and you never know what tomorow will bring you..hope everyone is as well as can be.. :)

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Blue, just read your comment in my email. One possibility re: cutting down on meds is that the doctors are concerned about rebound headaches, which are not uncommon with chronic pain medication (you can read about them on wikipedia). This might explain their concern, rather than being concerned about you overusing opiates for Bad Reasons or something like that. (Regardless, it ***** a ton, and I am super-sorry to hear that!)

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thanks Peregrine,

They aren't concerned about rebound migraine. I have bought this up with them. Some years ago I stopped all meds for migraine for 3 months because I had read about rebound headache. It was something I did on my own. The pain was very bad most days and at the end of 3 months I had the same pain pattern as I did at the beginning. I told my neurologist that I had stopped all pain medication for migraine and he told me not to do so again. He was concerned about the pain pathways.

But thank you for your concern,


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