Anyone found treatments that resolve/help orthostatic hypertension?

[crussher]

Hi everyone

I know there have been various threads discussing the ins and outs of why BP goes up or down for ME/CFS patients. This thread is for anyone who has found a treatment, whether medication or supplement, that actually improves or removes an increase in BP upon standing.

My BP while upright is typically something like 130/92. I find blood volume boosting measures don't massively effect this and I've been stuck on what to do for a while. I wear compression stockings when out and about which don't really change it much either if at all.

One thing I will chuck out there is that I was on a WhatsApp group for the HELP apheresis treatment in Larnaca, Cyprus. I didn't go in the end but noticed that a couple of patients who did apheresis found their orthostatic hypertension disappear as a result. Apparently the clinic team suggest that this phenomenon is due to the thicker / hypercoagulated blood and its poor oxygenation capacity leading (somehow!) to the higher BP when standing.

So has anyone actually improved or removed this symptom and how did you go about it?

 

[VisualEffect]

BP measures can be incorrect due to blood pooling in arms, if you have it. Reassure you are measuring it right, hand should be at the heart level.
I did it wrong and BP reading was 150/100

 

[crussher]

BP measures can be incorrect due to blood pooling in arms, if you have it. Reassure you are measuring it right, hand should be at the heart level.
I did it wrong and BP reading was 150/100

Thanks so much for this very helpful tip. So do you put your hand out straight in front of you? I have my elbow straight, rest of arm isn't, so that my hand has been I suppose at belly button level.

 

[Shanti1]

I don't have orthostatic hypertension, I have the opposite, but I was reviewing my notes from Dr. Alena Guggenheim who specializes in POTS/dysautonomia. She uses clonidine or methyldopa for orthostatic hypertension.

 

[crussher]

I don't have orthostatic hypertension, I have the opposite, but I was reviewing my notes from Dr. Alena Guggenheim who specializes in POTS/dysautonomia. She uses clonidine or methyldopa for orthostatic hypertension.

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Thank you so much for this, I’ll look into these drugs!

 

[hapl808]

I'm interesting in trialing guanfacine as well - both that and clonidine were also drugs Goldstein used I believe.

 

[Shanti1]

I'm interesting in trialing guanfacine as well - both that and clonidine were also drugs Goldstein used I believe.

Guanfacine seems like a great candidate, may help wit BP, Stress, and focus. It also has the right mechanism for orthostatic hypertenion, ie reducing the sympathetic surge that occurs with standing.

"An off-label use of guanfacine is for treatment of anxiety, such as generalized anxiety disorder and post-traumatic stress disorder symptoms."

"Guanfacine works by activating α2A adrenoceptors within the central nervous system. This leads to reduced peripheral sympathetic outflow and thus a reduction in peripheral sympathetic tone, which lowers both systolic and diastolic blood pressure."

"In ADHD, guanfacine works by strengthening regulation of attention and behavior by the prefrontal cortex."

https://en.wikipedia.org/wiki/Guanfacine

 

[Rufous McKinney]

Guanfacine seems like a great candidate

thats the one specific thing I mentioned to my GP on our busy Monday appointment.

He seemed to dismiss it entirely. (some remark about Ritalin)

did he think its just another Ritalin?

He wants me to seriously take modafinil so I have to sort of try a tad harder once I am out of PEM.

It feels like PEM daily again.

 

[Shanti1]

thats the one specific thing I mentioned to my GP on our busy Monday appointment.

He seemed to dismiss it entirely. (some remark about Ritalin)

did he think its just another Ritalin?

He wants me to seriously take modafinil so I have to sort of try a tad harder once I am out of PEM.

It feels like PEM daily again.

Maybe he just doesn't know much about it, it is classified as a "non-stimulant" medication. Seems like you wouldn't want to take it though unless you had high blood pressure, now sure what yours is.

I use modafinil occasionally, but I can't do it daily. When I use it, I try to use just enough to regain some cognitive function, but not to go into overdrive.

 

[Booble]

For me the risks of side effects from the medicines aren't worth it. If the high heart rate upon standing isn't going to kill me, I can live with it. I think it was harder before I knew that it didn't mean something was wrong or dangerous with my heart. I rather stick with trying to stay well hydrated and well salted along with standing up slowly and kicking my legs around if I have to stand in a line.