Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Does anyone else have Fluctuating Blood Pressure? Mine is ( top numbers ) 160 + laying down / 130 setting / down to 108 when I stand.
All pressures were taken immediately after moving and the cuff was never taken off. If you do what was the answer to this problem . thank You, Charlie
All pressures were taken immediately after moving and the cuff was never taken off. If you do what was the answer to this problem . thank You, Charlie
Joe
An electrophysiologist would be able to diagnose it best.
Carly
If I stand up too quickly, go up a flight of stairs too fast, or work with my hand higher than my head, I will get light-headed. The Midodrine lasts from four to six hours, depending on what I amd doing and the heat. Going out in the hot summer sun seems to counteract and deplete it. When I'm sitting, I hardly notice that I have a problem, so it doesn't bother me when driving.
I was first diagnosed with orthostatic hypotension, then, a few years later, with pure autonomic failure, and then, for icing on the cake, Myasthenia Gravis. The word "pure" means that they don't know what causes the autonomic failure.
I agree with Joe. If you have any of the symptoms that I described, I would recommend that you ask your doctor to check you for orthostatic hypotension and the possibility of an additional autonomic problem..
The body has a balancing act of blood vessels contracting and relaxing causing changes in the way blood flows around the body. Remember all blood vessels are actually smooth muscles that the body controls, which when working correctly, keeps our BP more or less stable and through that constricting relaxing control, balances the bloodflow to the areas of the body that need it at any particular moment.
Blood vessels have no nerves so we do not feel the changes that take place constantly, but they as a muscle are constantly changing, it's when the autonomic system malfunctions that our bodies can't adjust for BP changes such as when we stand up
Joe
Sometimes when you have fluctuating BP your doctor. will order a tilt table test to help define the fluctuations. Some people also have fluctuating heart rates that can go quite high.
I do have orthostatic dysfunction and autonomic dysfunction and in my type my heart does not compensate so when I stand my BP goes lower but the heart rate stays low too. The longer I stand in a day the lower it goes.
When this startrf my BP fluctuated from 200/165 to 75/45. My head felt like a basketball that was being inflated and deflated. At the timr I was on a calcium channel blocker which can make orthostatic hypotension worse. The latest research out shows a combination nof an old fashioned BP med called guanbfacine plus pyridostigmine can be very helpful. Lucky for me I get two tratments out of the pyridostigmine but I do have much better control now on those two meds.
I still have to watch fluyid balance and keep my legs elevated whenever I sit and 'i' have to watch how long I stand at any one time. I have to watch low BP the most right now,
I want to emphasize we are all different. One regiment does not fit all. I do not have POTS. I t has taken careful work over time with my neurologist to get some control.
I had the tilt table test done locally. If that shows autonomic dysfunction it is good to get that evaluated where they have the equipment to do catecholamine testing and autonomic dysfunction t6ests like the QWSART. There is a lot of general information on this at POTS PLACE even if you don't have POTS.
Also in the beginning I had some odd things like higher BP when I laid down that later reversed. Hope you get some answers with this!
It is good to keep a BP diary that also has time of day and body position and include heart rate.
I have the wildly fluctuating BP, too, although not the marked difference between lying and sitting. I have orthostatic hypotension as well. I take small doses of a beta blocker (atenolol and metoprolol are the safest for us) to control the high fluctuations, and try to remember not to stand up too fast :-) They have an outstanding autonomic clinic at Vanderbilt where I see my neurologist, but that is 300+ miles away and when I am not so sick of being worked up (mostly negative tests), I may take my neurologist up on the referral. My high BP was 300/110 in the doc's office (transient) and sometimes 80/50 at home. Hard on old blood vessels. On my present medication, it seldom gets up above 160/85, the low is probably still around 80/50, and mostly it is the normal range.
Fortunately it has been a long time since I saw that high BP. That was when I had not been formally diagnosed and was on high doses of a calcium channel blocker--those are on our take with caution list.
b.