I have only just read this thread ( with our memory problems I won't swear to anything though
) after searching for a topic on hypertension and ME.
I have just returned from a GP appointment. Actually, I am in complete shock. My area always had the reputation of being the worst in the UK for doctor hostility towards ME (the so-called secret files on ME that have been hidden away under the Official Secrets' Act relate the stories of those of us who have been so abused, neglected and died because of the marked hostility of GPs here that even the GMC took the initiative and phoned me to tell me that they were aware of how bad the situation was for us) yet my GP today informed me she was aware of our problems with medication and enquired whether she would like me to be offered later appointments as she knew that early mornings were a bad time for those of us with ME. I was so overwhelmed by the change in attitude that I nearly hugged her.................I did stop myself just in time, fortunately, and regained my composure. Anyway, I digress..............
Since 2007, I have had three admissions to the emergency department with apparent strokes. On the first occasion, despite being very ill and unable to walk, once they discovered that I had ME their attitude changed abruptly and I was ordered to leave the hospital at 2 am in the morning even though I lived 14 miles away in the sticks and with no one to take me home. I collapsed in the corridor on the floor and a neighbour kindly rescued me in the early hours and drove me back to the village. I spent the next three months with an apparent ME relapse.
On the second occasion, I recall sitting in front of my desk top computer one afternoon and then, the next thing I recall, is being aware of rough material pressing into my cheek. It was the landing carpet outside the bathroom door and it was very dark. My next memory is that it was daylight and I was sitting on the couch with no recollection of how I got there. I had no idea of what happened to me but I couldn't wake up for a whole week, which seemed bizarre after 30 years of ME-weapon-grade insomnia. I don't think I ate, but my memory was wiped clean. I tried to leave the house to get food from a shop after about five days.............and passed out in the ready-meals' freezer.
Another ambulance took me very much against my will to A&E. Again, despite losing sensation down my right side , I was discharged when they were told I had ME. I witnessed and heard two members of staff laughing about the diagnosis and ridiculing the disease. Again I was ordered out by the staff and ended up on the floor as my legs wouldn't work and I kept vomiting. They hastily gave me an ECG and scooted me off to the emergency medical unit and told me that I seemed to have cardiac problems.
By the following day I was very ill indeed, and couldn't stand. I also felt very 'poisoned'.........a sensation I associate with ME. However, they told me that I was, in their view, a cardiac patient, and therefore not their responsibility and I was discharged. I couldn't walk and had to be taken out in a wheel chair and into a friend's car.
I experienced a severe relapse of apparent ME symptoms, although it was slightly different and I also developed severe breathlessness. I received a hospital appointment for the cardiac unit, but was too sick to get out of bed and so couldn't attend. My doctor was instructed by the hospital to follow this up when I was well enough to cope with further investigations. He failed to do this. He had no patience with ME and ignored me. I have been left with some permanent damage from these two attacks.
The third time it occurred, I was again whisked away and this time admitted to the stroke ward where I was treated with kindness.........such a novel experience. A CAT scan showed brain damage but I was told they didn't know how to interpret it, so it was ignored. Maybe it is due to aging rather than either ME or the stroke-like attacks. Again I was very ill for three months with an apparent ME relapse and severe breathlessness. I have had two more 'events' of a similar nature but I had the sense this time not to ask for help but to remain at home.
However, I think now the mystery is solved and I think it may be a result and a characteristic of ME and wonder if others who developed this illness have now developed the same problem.
This morning the doctor told me I have 'malignant hypertension' and my severe ME relapses were in fact hypertensive encephalopathy. It is so very similar to ME that it is not possible to tell the difference in my experience. So for 30 years I had severe orthostatic hypotension and now I have orthostatic hypertension when my BP suddenly rockets to about 230/130 or higher. It seems that it is the speed of change which is the problem as the autoregulation system cannot cope with such rapid hikes and one develops the symptoms of a stroke and permanent damage.
I have tried ramipril but it has caused a large patch of psoriasis across my face so I have stopped taking it, not that it helped much as my BP still rose sharply and alarmingly, making me feel sick and as though I was about to experience a stroke. It is scary!
I wondered if anyone else is experiencing malignant hypertension after many years of hypotension as a result of ME and whether they have found a medication to control it. I do recall Prof Pinching telling me that if a GP treated our hypertension as essential hypertension that the situation could be aggravated and we would be more likely to have a stroke.
Has anyone else travelled down this road yet and have some words of wisdom...........or do I really need to get a wriggle on and rewrite my will?
Thanks!