RWP (Rest without Peace)
Senior Member
- Messages
- 209
Hi all,
I just had my TTT this morning. I was frustrated that I couldn't do it later in the day because my symptoms are always worse from 11 p.m.. to 2 a.m. when I am either sitting or standing while helping my wife (disabled with severe CFS) get to sleep. Anyone know any night owl electrophysiologists???
I didn't have any syncope or precipitous drop in BP; my Bp went up from 129/78 (baseline) to 173/97 at about 30 minutes. The diastolic did make it to 100 right before that, when the systolic was 168. It then gradually descended for the last 15 minutes. Paul, the Physician's assistant, didn't want me to do the isupril (sp?) because I wasn't even close to having syncope. According to Dr. Bell (quoting Dr. Streeten), a rise of 20 or greater in systolic= OrthoHYPER.
So, I'm not surprised that I couldn't get a positive result at this time of day. I don't really want to do the test again because the only variable I could change (to make myself sick enough to MAYBE show up) is to force myself to stay up all night, thus risking falling! I do faint occasionally but not habitually because I know how to prevent.
Where do I go from here? I feel like I need to research orthoHYPEr more and maybe find info online from a doctor who is specialized in this. I didn't even ask Paul what to do because it seemed that, unless I would have fainted, this aspect was irrelevant to him.
Ahimsa reminded me that an OI specialist may not understand ME/CFS, so I don't know how far I could get.
BTW: I wouldn't be able to travel to see this "unknown" expert, just read papers online. My normal BP readings are fairly normal when sitting and not under stress, like high 120's and low 130's over 70s-80ish. But in the Dr.'s office, or when I'm under stress at home, it will be higher, so I may need some BP med eventually. Thank you for your time.
Also, please point out any relevant info on this site that I may not have found yet.
Paul
I just had my TTT this morning. I was frustrated that I couldn't do it later in the day because my symptoms are always worse from 11 p.m.. to 2 a.m. when I am either sitting or standing while helping my wife (disabled with severe CFS) get to sleep. Anyone know any night owl electrophysiologists???
I didn't have any syncope or precipitous drop in BP; my Bp went up from 129/78 (baseline) to 173/97 at about 30 minutes. The diastolic did make it to 100 right before that, when the systolic was 168. It then gradually descended for the last 15 minutes. Paul, the Physician's assistant, didn't want me to do the isupril (sp?) because I wasn't even close to having syncope. According to Dr. Bell (quoting Dr. Streeten), a rise of 20 or greater in systolic= OrthoHYPER.
So, I'm not surprised that I couldn't get a positive result at this time of day. I don't really want to do the test again because the only variable I could change (to make myself sick enough to MAYBE show up) is to force myself to stay up all night, thus risking falling! I do faint occasionally but not habitually because I know how to prevent.
Where do I go from here? I feel like I need to research orthoHYPEr more and maybe find info online from a doctor who is specialized in this. I didn't even ask Paul what to do because it seemed that, unless I would have fainted, this aspect was irrelevant to him.
Ahimsa reminded me that an OI specialist may not understand ME/CFS, so I don't know how far I could get.
BTW: I wouldn't be able to travel to see this "unknown" expert, just read papers online. My normal BP readings are fairly normal when sitting and not under stress, like high 120's and low 130's over 70s-80ish. But in the Dr.'s office, or when I'm under stress at home, it will be higher, so I may need some BP med eventually. Thank you for your time.
Also, please point out any relevant info on this site that I may not have found yet.
Paul