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From: Mary
Date: 1/19/01
Time: 6:57:24 PM
Remote Name: 209.240.220.224
Hi Dee, You asked,"what helps you get thru this"? Really don't know what helps. Maybe one day at time and one foot in front of the other.Beta blockers made me worse, because, my heart rate fell thru the floor on them.I am not working now. Have so many days of fatigue, don't know how I could get up and go to work.My Doctor is recomending a pacemaker to keep my heart rate up before an episode. This way I probably will not have as severe of symptoms.It is really a difficult decsion for me to make.
Glad you found the NDRF site informative. I don't have any problems with changing positions. My diagnosis is more in the category of neurocardiogenic syncope. There are not that many Doctors who are truly familiar with autonomic disorders and some who don't want to take the time to learn about them. If your Doctor is not giving you the service you need, find another.
Also, a good place to search for information is, google.com. Just put in what you are looking for in the search and you will be amazed the information you find. Blair P. Grubb, MD has alot of information on the internet. He is very familiar with dysautonomic conditions. Put his name in your search and you will find more info.
Did your episode last for 45min. or was it an episode and the after effects that lasted that long?? I know I feel fatigue for days after an episode.
Take care and let me know how you are doing.