Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

 
 
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Old 02-18-2013, 10:00 AM #8
BraveGirl BraveGirl is offline
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Join Date: Jul 2012
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BraveGirl BraveGirl is offline
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Join Date: Jul 2012
Posts: 54
10 yr Member
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My daughter also has problems with syncope (she has CRPS as well). Her doctors describes it as a problem with not enough blood getting to her brain, so she gets dizzy and sometimes passes out. The main strategy has been to increase her blood volume, using the following measures:
1. 4000 mg salt per day, using Thermotabs (but some docs say to not use salt tablets and increase dietary salt)
2. Fludrocortisone
3. 1 liter of water/day

Obviously, you would need to do #s 1 & 2 under the care of a doctor, but #3 you can try on your own.

The other thing that was recently added that has helped a ton is compression stockings: http://www.brightlifedirect.com/jobs...-15-20mmhg.asp

They keep the blood from pooling in her legs, so there is more available to get to the brain. Some insurance plans will cover them.

All of these measures were put in place after my daughter was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), which was diagnosed primarily w/ a tilt table test, however, I think the same measures are used for a variety of similar autonomic dysfunctions. Good luck!

Lori


Quote:
Originally Posted by Angelina55 View Post
We do learn from eachother. I have been so busy I haven't been able to call my neurologist that I see for migraines yet. But I do think you are right about getting a blood pressure monitor. I will feel umm weird, i just know my blood presure is droping. I can really feel my heart beat and it seems not right. and I will get light headed. And only want to sleep or lay down. It is such a weird feeling. My blood pressure has been low lately and really low for me. I am usually very high.
I hope you find your answers and don't give up hope just yet. And don't worry about what other people think! You just do what you have to do!
Angelina
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Angelina55 (02-18-2013), reluctant@thetable (02-19-2013)
 


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