Dysautonomia & POTS

[Frosty1227]

I have had some of my symptoms subside like sharp pains radiating to a #10 on th pain scale above my pubic area. I have no problems urinating.   I feel that I do not have the ability to have a bowel movement automatically like the digestive track is shut down.  I continue to have sweats and chills...gerneralized weakness in my legs (whole body @ times) and fluctuates day by day.  Not all symptoms are present every day.  Sometimes I have jerks and my whole body shakes...I refer to it like an electric shock that usually happens when sleeping.  I have trouble sleeping at night like I am wired and then there are nights that I sleep so sound I feel that it takes me forever to wake up from the sleep.  I had a day on Sunday that taking a shower and dressing myself set off a spell (thats what I call them) of having to get layed down flat so that I can regain breathing regulating with my heart rate & Blood pressure.  At these times I lose control to stand under my own power and it takes to people to help me to get layed down.  When these spells hit I feel them coming on.  On Sunday I didn't have the power to get layed down without help and felt tingling and numbness through my whole body with vibrations and trembling.  It feels like hyperventilating.  I know this because it happened to me when I was giving birth to my children.  I do know that palpations in my chest feel like my heart is going to jump out of my chest and it makes me cry with the overall sensation over my body.  It takes about 45 minutes to get calmed down from these spells.  When they hit I am usually in a sitting position.  I believe it is the rising of my heart rate and my blood pressure is not helping to regulate.  Has any body else felt this and is this a true diagnosis of what POTS feels like or is there other things playing into the symptoms?  Can a specialist in POTS help with my diagnosis and what is the next step?  I have been put on Florinef... is there anything else anyone has found that gives you back your activities of daily life?  I know I am impatient and looking for answers so please help me with this.  Trying to figure out the next step in getting well again...

[Heiferly]

The spells you are describing sound atypical for POTS, particularly as they are occurring in a seated rather than standing position.  Also, some of the neurological symptoms that accompany the spells sound a bit atypical, such as the tingling/vibrations/numbness/difficulty laying down without help.  This is not accompanied by fainting, correct?

Did you mention before the possibility of getting checked out a Mayo for other possible conditions besides POTS?  If I were you, I think I would continue to pursue the possibility that something else might be going on as well, considering the neurological symptoms you are having.  Hopefully a major diagnostic hospital can sort it out.  

What is your actual blood pressure and heart rate during these spells?