Well because of my blood pressure staying high now the doctor has now stopped my midodrine and florinef. He does not want me taking either one until we get my blood pressure under control. Guess I dont have hypotension anymore now its just down right stage 2 and stage 3 hypertension. I give up. I dont know what my body is trying to tell me anymore. I feel like every joint and muscle is in a kink right now. Like I need someone to pop my back or something. My heart is going ninty to nothing. Boy I cant wait until I go see what this EP cardiologist has to say at this point and just somewhat fix me. This is just getting crazy and very depressing.

Get the following tested:

Potassium
Magnesium
Calcium
Sodium

Vitamin D3
B6
B12
Folic Acid

glycine
proline
serine
hydroxyproline
isoleucine
valine

Albumin (blood protein)

while you're at it, get your homocysteine tested!

I would say at this point your body has been overloaded and screwed up by all the medication and salt loading. The pain maybe due to hypokalemia or lack of connective tissue building amino acids or both.

side note: Potassium supplements and garlic will lower a high blood pressure also in case it's getting way out of control. I have NCS and I had a period last summer of hypertension and pain in my joints and muscles. Took my potassium supplements and it lowered it back to normal while lessening the pain. The muscles need to excrete Potassium when you use them. Kind of like a lubricant. If you don't have enough it can be painful. I thought I was getting enough Potassium in my diet at that point. I was wrong. I now take Potassium and Magnesium daily. (magnesium deficiency can cause potassium depletion).

Things like potassium, magnesium, calcium, etc etc control the electrical circuitry of the heart if you will. If these are unbalanced all sorts of problems can arise with abnormal heart rate. Homocysteine is also associated with arrythmias.

Misty--Looks like you and I have had similar experiences with our Dysautonomia. I also began with hypotension and the longer I took bb's the higher my BP got. I am now also hypertensive, with my systolic having gone as high as 175 in the past and the diastolic as high as 117 one time. Luckily those readings are not the "average" for me, but still my usual BP is in the pre-hypertensive range. My HR has normalized over the years because of bb's, but the HR being lower now has made the BP go higher, so there ya go. It's always an unfortunate trade-off.


Gillian

My bb's do work to get my bp back down. They have me on them twice a day or if I go into extreme hypertension like I have of 215/120 with a pulse of 154 they have me double them up to get it back down. I havent seen low bp in I dont know how long, for awhile it was running normal then it started this high crap. Hopefully when I get this midodrine and florinef out of my system it will level back out. But so far I have been off the midodrine since Friday and the florinef since yesterday and still no change. BP is still going up high. But I am also stressed right now. And unfor. there is nothing I can do to change that. I am not stressed about my health I am stressing about other matters. As far as all the other blood work my cardiologist wont do them. He said the endo will need to do it and I still havent gotten my appointment with them yet. Still have a couple more weeks before I know something with them. I go see the EP cardiologist on the 13th I dont know if I can convence him to do them or not. So I am in the cloud of what is going on. All I can do is keep going to the ER whenever it spikes to dangerous levels and let them get it down and still not have any answers to why I am having this problem.

Don't bb's lower your bp as well as your hr? I was on them for a few months only and it lowered my bp too much plus I got a nasty cough so I went off them. I certainly didn't feel any better - just had a lower hr.

I've been on BB's for years now (Coreg) to control my HR. B/P always low even before all this Dysautonomia stuff (90/60). This past year though, my B/p has been creaping up. I am a nurse and this has puzzled me. Mine is not as high as you guys, but it has been creaping up. I'm puzzles.

Have ur docs given you an answer as to why? Just curious?

Susanf