Lynnylouwho

Thanks, Statesof... That makes me feel better. It seems that nothing ever correlates to anything.. When I am laying down the HR will skyrocket and then dump.. BP is the same.. Sometimes I feel palpitations and other times not.. but usually when it started fluctuating wildly, I do feel like something has creedped inside my body and taken over.. WOW.. So I got my brain scans done today. MRI with and withou.. and MRV.. Some white matter found on the MRI and some possible juglular stuff on the MRV.. but it looked rather mild. I wonder how long it takes to have JHU to have an open date for an appointment.. I am told it will be two days of testing.. I don't care.. We will get a hotel and if I feel good, we can find some good crab cakes in Maryland to eat. Thanks for the contact here.. it is so nice not to feel alone..

Thanks.. the BP has been documented at the doctor's offices and the hospital.. Thanks for the meal thoughts.. I have started to eat the small meals too with higher protein. I haven't done the salt thing yet.. simply because of the BP and that they are still working on the cause.. So I will just let the doc's do their thing and then we can figure out where to go from there.. but gosh. it is a long haul.. Thanks for creating this space..

Hi - I am a newbie here on the forum and newly diagnosed.. I am a lucky one that got a quick diagnosis from my doctors.. Have Bechet's disease in remission now and know what it is like, however, to go thru all the agony of finding a diagnosis from a condition with weird symptoms. Right now they are trying to find the cause.. first ruling out an adrenal tumor and some brain and spinal cord stuff.. What is puzzling is that I do not have the orthostatic positional changes. When I stand up.. My BP will either stay the same or go sky high.. same with my heart rate. However I can be laying down and my heart rate can vary between 35 BPM to 213. .. for seemingly no reason.. Eating is a real challenge.. not the food, just the act of eating. It will cause light headedness to the point of lying down and then it is crash and burn. So I am trying very small meals through out the day today.. I have lost almost 10 pounds in the last month (since a discharge from the hospital) and I am thin already.. So ..this all seems rather normal for dysautonomia (is there really a normal for this? just kidding..) I am being sent to Johns Hopkins for a complete autonomic workup. They are waiting for all the testing to be done while I wait for a treatment plan.. here is my question: the huge fluctuations in my heart rate and blood pressure (sometimes as high at 210/110) .. does anyone else have that.. and should I be worried.. It seems like that would be very hard on my body.. I am not asking medical advice.. just looking for some validation of others who experience these same huge fluctuations.. Thanks for having this forum and all this information..