Thanks so much en bloc. I did the BP checks after gwtting a good cuff and there is dropping of both diastolic and systolic.

How much of a drop and after how long between each position? What are the readings?

Has the dizziness happened again getting out of bed (other than the one time)?

It is happening every morning now. I forgot to write them down.
Will take again. :hug:

It would be best if you kept a log for a bit...each morning (or any other time of day this occurs). Then give it to the doctor, so he can see and understand what you're experiencing. It will help him with diagnostics to have this information. Actually, a good physician will ask you to do this for a couple weeks (daily) to see what is happening with your BP. My mother's cardiologist is having her log her BP before getting up now after passing out several times...to help diagnose autonomic dysfunction due to age (she's 85).

If it is just happening in the morning, then try a couple things to help:

1) Sit up in bed for 5 minutes before standing...just to allow the BP time to adjust the change in position.

2) Set a glass of water by the bed and drink some (at least a half a glass) before getting up. Then wait 10-15 minutes before getting up.

3) Increase your salt intake...especially the night before. Salt helps the body retain fluid, and fluid helps keep the BP up.

These may sound silly, but even if you have autonomic neuropathy now on top of your SFN, these are the types of life-style adjustments you have to make in order to compensate for the drops in BP. There are medications to help, but these should always be tried first.

I'd be interested in seeing what your readings are from laying to sitting to standing, with just 2-3 minutes in between each change.

Is autonomic neuropathy a nuisance or does it become life threatening?


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Very helpful. Thank you for the suggestions. Now my doctor will do a tilt table test. Can't get it scheduled until fall. The log will help.:hug: Will PM you.

It can definitely become life threatening. I had to have a pacemaker implanted 11 years ago because of it. I also have times where my BP can get a low as 58/46 just from standing up (this is WITH medication). It can be a debilitating condition, but also includes just some annoying problems with temperature regulation, difficulty urinating, balance, heat intolerance, etc.

How low was your heart rate before the pacemaker? Could you elevate your heart rate with exercise? I've heard with autonomic issues some folks can't get their heart rate up.

Mine got down into the upper 30's while just sitting upright...low 30's if I lay down. I was able to get it a little higher if moving around, but I had profound PN with muscular weakness at this point, so 'exercise' (in the true sense of the word) wasn't possible.

I had already had 3 strokes (from another autoimmune condition called anti-phospholipid syndrome) and still having periodic TIA's (even with blood thinners). With the heart rate so low, they were concerned about enough blood getting to the brain and contributing to the TIA's, so the decided pacer was best way to go.

It was the right decision because the pacer keeps track of % of paced operation. At this point 89% of my heart beats are paced!! I would NOT be here without it.

Wow thank you for sharing that!

I'm an avid runner and my heart rate at rest in the evening is 48 bpm. Although my gut tells me the low resting heart rate is from a very efficient heart, a thought crossed my mind "autonomic neuropathy" lol

The difference is I can get my heart rate up to 160 and keep it there for an hour and then it drops to 100 quickly upon exercise cessation.

My primary care doctor always told me if I'm not symptomatic with a low heart rate it's nothing to be concerned about in a young healthy adult.

With this onset of neuropathy I was wondering if the slow heart rate was an issue with my autonomic nervous system.