Wacky blood pressure...any experiences?

[Ckitz]

I was diagnosed with NCS after a tilt test when I was in my 50’s., I have been ill since childhood with Dysautonomia and on disability since the age of 40. I suspect I have POTS despite being told I have NCS.  I don’t go to a doctor much because they don’t know what to do and I have limited income. I am disabled because of my Dysautonomia.. The last three years I have had a new problem with my blood pressure. Resting, it can go up to 160/ 116 or more, it can also be normal. The bottom number tends to stay in the 90s or 100’s...The few times I have seen a doctor...my BP has been normal, so they don’t see the problem. It has gotten so high I got extremely dizzy and was vomiting. In anyone's experience, should I be concerned? Can Dysautonomia cause this ?  Also, can exercising too much, or standing( walking) too much, do this, in your experience?  I eat healthy and exercise as much as possible.. I do have a lot of physical pain, but I don’t think that is what pushes the blood pressure up. 

I am very aware this form is not for professional medical advice, but I would greatly appreciate info on anyone else's experience concerning this blood pressure issue,  and what they do about it. 

 

[MomtoGiuliana]

Have you mentioned this symptom to your doctor?  Perhaps keeping a record of it over time and sharing that with your doctor would be helpful.  I have also found that electronic bp monitors can be off.  You may want to bring your monitor to the dr's office and have them check it or compare your bp to what they measure in the office.  Dysautonomia can cause changeable bp.  Although keep in mind that bp varies even in healthy people throughout the day, the readings you are getting sound high.  When my POTS was more severe I had episodic high bp.  I still take a beta blocker, that definitely helped.  Also I took an SSRI for awhile which seemed to help "even out" my sympathetic nervous system.

[Guest ANCY]

I deal with this most days, for me that's my better days. Range from 60/30-140/90 normally and a lot of days get up to 160/110. We are not able to do a whole lot treatment wise as I pass out several times a day because of low blood pressure drops and we don't want to push those any lower. It is really a big balancing act sometimes lol! I am 26 and was declared disabled at 20. Use florinef (0.1cmg 2 x a day) and midodrine (10-20 mg 5 x a day) and have used clonidine to try and bring some of the highs down but seem to be reacting to it...

Recording a log of BPs and bringing it in to my dr has been very helpful in the past. Periodically they'll have me do that so we can establish a sort of "baseline" to go off of. 

[Ckitz]

12 hours ago, MomtoGiuliana said:

Have you mentioned this symptom to your doctor?  Perhaps keeping a record of it over time and sharing that with your doctor would be helpful.  I have also found that electronic bp monitors can be off.  You may want to bring your monitor to the dr's office and have them check it or compare your bp to what they measure in the office.  Dysautonomia can cause changeable bp.  Although keep in mind that bp varies even in healthy people throughout the day, the readings you are getting sound high.  When my POTS was more severe I had episodic high bp.  I still take a beta blocker, that definitely helped.  Also I took an SSRI for awhile which seemed to help "even out" my sympathetic nervous system.

You are right, I need to start keeping a record again. One doctor , awhile back,said my monitor might be off, so I did research on a reliable monitor and bought it. I still got the same high numbers. I take a beta blocker. I just wish I knew what I was doing to cause it to go so high. Maybe just being in a standing position ( walking) too long. 

[Ckitz]

12 hours ago, ANCY said:

I deal with this most days, for me that's my better days. Range from 60/30-140/90 normally and a lot of days get up to 160/110. We are not able to do a whole lot treatment wise as I pass out several times a day because of low blood pressure drops and we don't want to push those any lower. It is really a big balancing act sometimes lol! I am 26 and was declared disabled at 20. Use florinef (0.1cmg 2 x a day) and midodrine (10-20 mg 5 x a day) and have used clonidine to try and bring some of the highs down but seem to be reacting to it...

Recording a log of BPs and bringing it in to my dr has been very helpful in the past. Periodically they'll have me do that so we can establish a sort of "baseline" to go off of. 

ANCY......Thanks so much for your input. I was  getting frustrated. I got scared I was going to have a heart attack, but when I think of it ,I have had so many attacks, I would have had one by now. Keeping a balance is hard. I have been going for long walks and I have a feeling this is causing my spikes. I need to keep a BP record again.  I hate seeing someone so young dealing with this....my heart goes out to you. 

[p8d]

Mine got up to 160/100 fairly regularly and I ended up cutting back on florinef a little bit which helps.  Have you been tested for hyperadregenic POTS?  I believe that can make the BP rise in some situations.  I finally found a beta blocker that helps my HR and BP that I can tolerate, Bystolic.  I also switched to methyldopa from clonidine for norepinephrine surges and found it didn’t tank my BP as much.