Dysautonamia HELP wanted

[occupiedlady]

Hi
I am new to this forum. I am 31 yrs old and 30 weeks pregnant with our 4th and final baby. I was Dx with Dysautonamia last year. I was dx with POTS and SVT and an Inappropiate SA Node and Hypotension about 4 yrs ago. With in the past year my symptoms have worsend to daily issues sometimes 2-3 times a day. My symptoms inc: Feet and fingers turn Blueish and have slow cap refill, increased HR, Low B/P, Dizzy, tingling in my face, sometimes slight swelling in my tongue, IBS and sweats and shaking like I am freezing. Usually I can take a Benadryl and within about 20 min it helps. (Only safe right now until I deliver). After I deliver if it doesnt improve I have to find help. I cant keep popping 2-3 Benadryl a day and feeling crudy. I swear sometimes I feel like I am going crazy. Thank heavens my hubby is supportive and tries to help me but we are at a loss. I also was Dx with Hypothyroid 2 yrs ago and I have Asthma. I have tried taking Flurinef and that doesnt seem to help at all. My Dr. is kind of at a loss and tell me just to take the benadryl. Any other advice? I would really like to get back to normal again where I can function w/out fear of this happening all the time.
Thx

[Heiferly]

Have they tested you thoroughly and definitively ruled out mastocytosis/MCAD?  Masto/MCAD can go hand-in-hand with POTS or have a similar presentation, and I know of some patients who first became suspicious because their symptoms responded so well to certain H1 and H2 antihistamines like benadryl, claritin, zantac, and pepcid.  If it is that, the treatment recommendations will be slightly different.  Few doctors know how to run the tests for masto/MCAD properly, so if your doctors think there's a likelihood of it, you may want to see a masto specialist to have it ruled out.  Here is some more information on that:

http://hyper.ahajournals.org/cgi/content/full/45/3/385
http://www.tmsforacure.org/mastocytosis.shtml

Not sure if you've already read these, but I thought I'd include them here as well in case you might be interested in any of them:

http://www.anesthesia-analgesia.org/cgi/content/full/104/1/166
http://www.ncbi.nlm.nih.gov/pubmed/15955196?dopt=Abstract
http://bja.oxfordjournals.org/cgi/content/full/97/2/196

Unfortunately, very little has been published on POTS and pregnancy.  One of those articles does document Midodrine use during pregnancy, I believe; has that been considered?  

Who is managing your dysautonomia?  (I.e., a cardiologist, neurologist, family doctor?)  Is that doctor at a private practice, local hospital, a major teaching hospital, or a dysautonomia clinic (Cleveland, Mayo, Vanderbilt, etc.)?  What was your treatment prior to getting pregnant; were you on different meds then?  Have you tried the Florinef only while pregnant or also before this and it didn't help?  What dose(s) of Florinef did you try?  Were you salt/fluid loading with the Florinef?

Sorry to ask so many questions, just trying to get more information to see if there's anything helpful I can point out.