I was most interested to read your post, taniaaust. I have just come out of the stroke unit after another hypertensive crisis causing brain injury. On this occasion, I was told my pupils became uneven and I lost the power in my right side, but both fortunately resolved.
For 30 years I had hypotension with the ME, sometimes severely. Then about four years ago, my BP would suddenly spike from sometimes quite low to 230/130. On three occasions now, I have been admitted to hospital and it has taken many weeks for the damage caused by the sudden spikes to mostly resolve. Unfortunately, the first one has left me with permanent vestibular damage and a Meniere's-type problem. On the second admittance to hospital, I was told I seemed to have a cardiac problem associated with it. I have tried to explain what happens to my doctor, but he seems rather bewildered by it and, like you, I have received no treatment. I think we are being left to become daisy fodder as this seems to be a rather dangerous issue, which is being ignored.
I know one other person who is now also experiencing hypertensive crises after many years of ME and hypotension. I would like to know if others here have experienced the same problem and whether their doctor has found any way of treating it. I used to think one couldn't have ME and hypertension, but I am obviously wrong.
I wonder how many other ME veterans are experiencing this?
C.G.
Ive had the symptom of unequal pupils and more like MS kind of symptoms eg foot/leg drag at times with this illness but cant relate them to the hypertension.
As far as how many of us are getting hypertensive eposides (id say due to having a dysregulated BP) there are no answers to that. As far as I know this symptom hasnt been studied at all yet in ME even those studying the autononomic issues in CFS (eg Adelaide research group) were focused on the low BP side of things and werent even aware that some of us are getting hypertensive bouts.
All I can say is this issue would be far more common then we realise. I know in myself that my BP was only suddenly spiking for an hour or so only about once a day so without 24 hr monitoring being done on someone (this is how I first came aware of my issue), this issue may be hard to see and probably will go unnoticed.
I had a huge BP spike in a specialist appointment recently while he was taking my BP.. he was taking my BP every 30 seconds and we took it from laying (it was fine laying) to standing .. and it instantly started going up on the postural change (I'd never seen it go up to orthostatic stimulation as quick as that, usually I've got to be on my feet for a short time first).
After 1-1 and a half minutes, my BP was up to 170 and at that point I started getting symptoms to standing. When it hit 170 I got a hot flush and head pressure and a very strong urge that I had to sit down (along with legs starting to get weak and go into shaking). I sat at that point (as I was concerned I was about to collapse), had we continued the BP monitoring with me standing who knows how much higher my BP would of spiked.
That showed me that I certainly do get symptoms due to these high BP spikes... I know now that I go into symptoms when my BP reaches 170 (but wasnt aware of my BP going up till it go to that point).
There are a few of us at this site with this issue. It is an issue Dr David Bell is aware of being in ME people.
CG you mentioned doctors thought could be a heart related issue. Since I posted that other post here, Ive realised I certainly have a mitral valve prolapse. I realised that as sometime within the past 3 years, 2 of my heart valves have developed leaking and when I looked up what was the most common cause, it said mitral valve prolapse.
Dr Cheney I think it was said most of those with ME have mitral valve prolapse (did he say 80% of us have this? the percent was very high).. all I know is mine mitral valve prolapse is being missed. (they didnt look into why I now have minor leaks in two of my heart valves which I didnt have before.. I wonder if my BP issues and the pressure they must cause in my system have caused the mitral valve prolapse????? or maybe there is a link to that and BP issues???????)
We really need someone studying this issue in ME as we all know that high BP is dangerous and research studies say that BP spiking separately to having high BP, is an extra risk factor to having an heart attack.
I made a wiki page at the world wide wiki on "orthostatic hypertension" if you wish to check it out. I went throu pubmed and referenced every study I could find (going back to the 1970s..only been 17 studies I think it was), so unfortunately hardly no studies have been done on this little known area. Only one big study has been ever done on it and that was its prevelance in the general pop. I know the issue is far higher in us.