I have been diagnosed 2005 with a-fib and with small fiber peripheral neuropathy. I had a pulmonary vein ablation and was after diagnosed with Pots. It has been progressing over the years, now have lacinating pain in mostly my left foot confirmed with biopsy showing severe reduced nerves and flunked the tilt table test. Now my BP is plummeting when standing up, recently passed out at work landing on my face. Have profusely sweating and always freezing even in 80 degree weather. Rapid irregular heart rate. I am 47 and a avid runner, or say I was avid runner. Feel like a am falling apart, not sleeping well because of pain in foot, and unable to stand up with out my Blood Pressure dropping Blood Pressure. Any advice would help!

Thank You,
Frustrated!

Autonomic neuropathy can be a debilitating condition and greatly affect your quality of life.

You've obviously had some testing (tilt table) for the POTS, but you don't mention what (if any) treatments you are receiving. For mild cases there are life style changes, increased sodium intake, proper attention to hydration, etc. But yours sounds more severe and may require other intervention.

There are a few medication to help increase BP. Midodrine and Florinef are first line treatments for moderate to severe orthostatic hypotension. Midodrine is a vaso-constrictor which helps to keep blood from pooling in your feet upon standing. Florinef is a mineral steroid that works by helping the body to retain fluids, which in turn increases BP.

Usually doctors start with one of these and it can take a while to modify dose or add the other medication if needed. You need to pay attention to your body when upright for sign that you will pass out...increased heart rate, sweating, weakness in your legs, and of course, the most common--lightheadedness and dizziness. As soon as you feel any of these coming on, you need to sit down immediately. Symptoms can easily be reversed by getting your feet elevated. If you are in a location where sitting is not an option, then walk...the contraction of muscles will help to increase BP a little...hopefully long enough to get to a place to sit. Also keep water with you as you can increase BP fairly rapidly by drinking water.

Of course the best treatment is to address the underlining cause, but you may not know what that is. So you do the best you can what options available. You really need the help of a good autonomic specialist or cardiologist to manage your BP meds.

The heart rate sometimes settles down once you get the BP under better control...as the heart rate increases are usually compensatory to the low BP (the heart knows the BP is low so pumps faster to compensate).

Hope this is helpful. Have you had other autonomic testing like QSART, 24 hour BP, holter monitor, etc?

Welcome Frustrated!

Enbloc gave a great explanation of what is going on in your body and ideas on how to handle your symptoms. My daughter had this issue. The only thing I can add is to carry pretzels or some other salty snack with you. The salt helps to keep the fluid in your body thereby increasing your b/p.

Thanks for the response, yes I had tilt table and it was abnormal. I am on floinef 0.1 2 tabs and can't take midodrin because of heart surgery. I drink a lot of soup. This condition is starting to wear me down! I have 11 year old very active twins, I am currently trying to hold my full time job 0f 22 years, but it all seems to be falling apart. The pain, the no sleep and the constant fatigue and blood pressure dropping is bringing me DOWN! I will keep an I on this forum for any advise.

Best,
Frustrated!

Boy do I use that word A LOT.....Frustrated

Just wanted to ask you for an update on how you're doing.

11 year old twins....awesome.....when I listen to my grandchildren that are about the same age as your twins they just tickle me to death......everything is so dramatic in their lives

I am so sorry you are going through this and like the others say, sorry you had to come to NT but glad you are here with us.

Debi from Georgia

Frustrated... I was also diagnosed with SFN, pots and afib this year. I am 33. Has your Dr's found a cause for your conditions? I am still undergoing tests. There must be a connection between SFN/autonomic neuropathy and Afib.

Welcome jtime.