• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Orthostatic HypERtension?

jace

Off the fence
Messages
856
Location
England
One of the first signs the doctors saw that I had something wrong with me was my blood pressure reading 165/98 or so, in the doctor's office. I was put on blood pressure meds, which made me feel so much worse, as the side effects were increasing my existing neural symptoms of dizziness, headache, fog, tinnitus. I gave the meds six weeks before I stopped taking them, and bought a blood pressure monitor.

Using this I noticed that my blood pressure fluctuates from 110/80 when lying down, to around 170/110 when I've been upright. My heart rate varies from 73 laying down, to 133 upright - this is not with any kind of exertion, just pottering around.

I showed my GP the results, and she wired me up with their 24 hour ambulant blood pressure monitor to check my findings. I took the gadget and my activity diary for the day back to her last Wednesday.

I am going to see her on Tuesday, and while it will be the first test they've done that will show that there is something wrong with me, I'm dreading the probability that she'll want me to go on blood pressure lowering medication again, because I think what's happening is that my brain is chronically short of blood, and the raise in pressure is my body trying to keep the brain fed in difficult circumstances.

Does that make sense to you? Have you any words of advice for me? Am I right about what's going on?
 

Countrygirl

Senior Member
Messages
5,429
Location
UK
jace;64821]Oh well, no-one has any advice. :

After many years of very low blood pressure, I am now experiencing the same problem as you Jace. My BP is reasonable to lowish when lying, but far too high when on my feet. My BP suddenly shoots to 230/115 or so. On two occasions, it has caused an ischaemic attack in the basilar artery because of the rapid rate of change in BP, which has left me unconscious, and off my feet for a couple of months as it made me very unwell. Unfortunately, it has caused permanent vestibular damage. I'm afraid I really don't know what the answer is yet, but will endeavour to find one.

My GP's comment ' Perhaps it's something to do with your condition'. Medical treatment: none.

CBS has a very interesting post on this in another thread, which I must find again.
 

valia

Senior Member
Messages
207
Location
UK
Hi Jace,

Sorry I can't give you any advice, but I do sympathize with you on the blood pressure lowering meds,

I have been on them for 3 weeks after my blood pressure measured 190 over 85 (odd for me as I have always had low BP)

I stopped taking them on Friday, after 3 days of continuous gagging and vomiting, swollen eyelids and other stuff, spent the last night on the bathroom floor, stopped vomiting the next day, but still have some nasty side effects.



I used to have Orthostatic hypotension (the other way around) your blood pressure drops when you are upright, I fainted a lot, especially when I stood up or just got out of bed.
 

Carrigon

Senior Member
Messages
808
Location
PA, USA
It's normal for POTS. We read higher at the doc's office, then we come home and it drops to the ground. You have a low blood pressure condition, not a high one, but they often screw up and give you blood pressure pills which will make you a thousand times worse or faint. You need the opposite. You need a way to get it stabilized, not lowered.
 

jace

Off the fence
Messages
856
Location
England
Thank you people. Countrygirl, it sounds like I shouldn't moan, you have it far worse. Valia, I used to always measure low on the blood pressure scale too, wherever it was taken. Weird, isn't it.

Though I truly wish no one else had to suffer with this, it is on the other hand nice to know I'm not alone. If that makes any sense at all.
 
Messages
61
This is a very good article explaining way hypertension may occur. I have snipped out a bit re Mast Cells.

Orthostatic hypertension has also been associated with a number of conditions involving some form of autonomic dysfunction. In a recent study of patients with POTS in the context of disordered mast-cell activation, 38% (3/8) were shown to have orthostatic hypertension.19 Interestingly, in this group of patients, the orthostatic hypertension manifested as either a persistent hypertensive response to assumption of an upright posture or as a hypertensive crisis, with BP as high as 240/140, with upright posture. This has not been observed in patients who have POTS but do not have mast-cell activation disorder. Patients with baroreflex failure may also occasionally experience episodes of orthostatic hypertension.26, 27, 28, 29

http://www.nature.com/nrneph/journal/v2/n8/full/ncpneph0228.html
 

Countrygirl

Senior Member
Messages
5,429
Location
UK
Thanks for that article, Lesley. It is very interesting and useful. I'll save it for future reference and maybe even give it to my doctor. :Retro smile:

Warmest wishes,

C.G.