Erractic Blood Pressure Readings

[Rene S.]

Hi. I've been plagued since my so diagnosis of the most erractic b/p readings. My life before Dys. was normal with b/p readings of 90/60 and h/r 60-70. Now, it seems like with each day, they just keep getting more and more erractic.

For instance, I was sitting down quietly on the bed, which seems to be the only way I am comfortable. My b/p was 110/72, hr 82. Turned over and it changed to 124/74, hr 84. Then, I decided to go downstairs grab something to eat and came right back up. I started shaking and feeling awful. Sure enough my b/p was elevated to 177/82, hr 103 (while sitting). Then went to 178/79, hr 86. Grrr. I know, put the cuff away, but I hate the way I feel. Is sitting in bed what I'm doomed to do for life in order to feel "normal"?

I was tested in Dec. for a Pheo. I'm demanding another test for it. I take a few steps and my b/p is elevated as well as my h/r and I get a wicked headache. Seems like all on the boards complain of low b/p which I had in the beginning of my diagnosis but never severely low.

Does anyone have a clue as to what's going on with me? The drs here don't get it. When I look of pheochromocytoma I have most of the symptoms. And my endo says impossible that it's anxiety that's driving my b/p up. Now I know anxiety can do that, but to this extent?

Please, any comments or imput would be greatly appreciated. I will drive myself nuts!

Thanks

Rene

PS. I'm not on an beta blockers, can't tolerate them. Maybe I need to be!

[Lizzegrl]

I have similar bp issues. It jumps all over the place and that is the primary issue that Dr. Grubb is trying to control with me since it is the most dangerous, since mine is high. My heart rate actually runs over 100 most of the time resting, with my normal bp running in 140-150/100-115 range at rest. I actually have to log mine at least twice a day and take them with me so that they can work on getting my medications at the right dose. You might try doing that, so that you have something concrete to show the doc. I would bring it up with your doctor next time you see them.

Btw, I also had low blood pressure most of my life!!

[Sunfish]

i'm too tired to write a more thorough or thoughtful post at the moment (sorry ) but did at least want to let you know - as someone who has been in the "dysautonomia world" so to speak for almost 12 yrs now (as a patient as well as in other assorted ways). as such i can assure you with 200% certainty that all of the signs & symptoms you are experiencing are not at ALL uncommon within a diagnosis of dysautonomia. i of course cannot guarantee that nothing else is going on in your specific case, but having read all of your posts on the forum thus far there you have not mentioned anything that falls outside what can easily be "just" dysautonomia. while i know that low bp can at times overtake more discussions, i can assure you that a significant number of others here on the forum deal with intermittent high blood pressure.

additionally it is not particularly far-fetched for your doctor to suggest that your readings may be RELATED to your anxiety; note that i did not say that anxiety is the sole cause of your symptoms, and it doesn't sound that your doctor is alleging that either. but your anxiety re: your BP/ HR readings may very well be yet another aggravating factor, which - in combination with other triggers such as running up & down the stairs, standing up, etc - could easily result in the numbers you're reporting b/c in those with dysautonomia the underlying control mechanism for controlling the BP & HR isn't quite what it should be; in other words it's not the same as it would be to suggest the same thing (i.e. that the BP/ HR fluctuations are related to anxiety) to someone without dysautonomia. so while i realize that it's easier said than done, the very numbers that you're so anxious about might very well improve somewhat if you could somehow remove - or at least reduce - the extent/ degree to which you are anxious; sort of a catch-22 but a likely reality all the same.

by no means should you resign yourself at this early point in your dysautonomia-journey to not improving and should certainly do whatever you can (within reason) to work towards improved health; this could mean different medication(s), lifestyle change(s), a new physician &/or some combination of these things &/or something else.

i'll try to get back & reply more personally & thoughtfully when i'm not falling asleep as i type. for now i hope some of the above info helps at least a bit.

cheers,

melissa

[Rene S.]

i'm too tired to write a more thorough or thoughtful post at the moment (sorry ) but did at least want to let you know - as someone who has been in the "dysautonomia world" so to speak for almost 12 yrs now (as a patient as well as in other assorted ways). as such i can assure you with 200% certainty that all of the signs & symptoms you are experiencing are not at ALL uncommon within a diagnosis of dysautonomia. i of course cannot guarantee that nothing else is going on in your specific case, but having read all of your posts on the forum thus far there you have not mentioned anything that falls outside what can easily be "just" dysautonomia. while i know that low bp can at times overtake more discussions, i can assure you that a significant number of others here on the forum deal with intermittent high blood pressure.

additionally it is not particularly far-fetched for your doctor to suggest that your readings may be RELATED to your anxiety; note that i did not say that anxiety is the sole cause of your symptoms, and it doesn't sound that your doctor is alleging that either. but your anxiety re: your BP/ HR readings may very well be yet another aggravating factor, which - in combination with other triggers such as running up & down the stairs, standing up, etc - could easily result in the numbers you're reporting b/c in those with dysautonomia the underlying control mechanism for controlling the BP & HR isn't quite what it should be; in other words it's not the same as it would be to suggest the same thing (i.e. that the BP/ HR fluctuations are related to anxiety) to someone without dysautonomia. so while i realize that it's easier said than done, the very numbers that you're so anxious about might very well improve somewhat if you could somehow remove - or at least reduce - the extent/ degree to which you are anxious; sort of a catch-22 but a likely reality all the same.

by no means should you resign yourself at this early point in your dysautonomia-journey to not improving and should certainly do whatever you can (within reason) to work towards improved health; this could mean different medication(s), lifestyle change(s), a new physician &/or some combination of these things &/or something else.

i'll try to get back & reply more personally & thoughtfully when i'm not falling asleep as i type. for now i hope some of the above info helps at least a bit.

cheers,

melissa

Thanks, Melissa. Yes, I am plagued with anxiety. I've always had it, but not to this extent. I think the illness only makes it worse. It's a vicious cycle. I'm alone and scared and you would think that a woman of 50 would be able to pull herself together and get over it! I hate not being normal. I hate being told by drs that it's due to menopause and anxiety disorder. I'm tired of the ups and downs (lately more ups of high b/p and h/r). I want this to be over. I'm sure you do as well. Sorry, it's pity party time for me!

HOw do you get to a point where you realize that this is normal for you? How do you accept it and live with it? I just want to wake up and have it over with! Maybe because it's all so new to me and all of the stressors that I dealt with in the past.

I want my heart to be strong, but how can it when I can't even exercise except for climbing the steps about 20 times a day and then struggling to catch my breath?

Sorry for the rant. I just needed to vent.

Thanks Melissa!

Rene