Since contracting M.E., I have suffered from three, yes three, types of dizziness. The first is vertigo, which is when things seem to be moving or spinning. This one I don't get very often, usually after a cold virus.
The second type I might not even call 'dizziness' except I can't find another word to describe it. Basically, I feel like I am looking at the world through layers of fuzz. My eyesight is affected, and it is worse when I move my head. Noise, bright lights, and anything moving, basically most stimuli aggravate it.
While visiting friends over this past weekend, I had such a bad bout of this, at one point l lost 50% vision in one of my eyes…it was similar to the aura you get before a migraine, without the headache. I am still suffering some even though I'm now home and doing very little, but with much less stimuli the feeling of 'dizziness' is muted.
The third type is lightheadedness. It is clearly (and has been diagnosed as) orthostatic intolerance. This is a feeling of lightheadedness when upright or standing. It can lead to blackouts (full loss of vision) and then fainting (passing out).
I mostly notice it if I'm standing for more than a moment or two, or I'm bending over then standing up, or getting up from a laying down position. I notice a swooping feeling. I have both types of OI - postural orthostatic tachycardia (POTS) which is a heart rate that increases by more than 30 beats a minute when going from incline to standing. I also have postural hypotension, meaning that my blood pressure drops when I stand up.
So a while ago I said I had some good news re: new treatment. The treatment is a drug called Florinef. It is a type of synthetic glucocorticoid (a hormone secreted by the adrenal glands) that is supposed to help with the orthostatic intolerance by regulating heart rate and blood pressure. Well after two weeks on a 1/2 dose, I noticed no change. Then, after a week on the full dose I had a very amazing improvement of symptoms.
However, seeing as the severity of OI comes and goes, I didn't want to report improvement, in case it was just a coincidental good spell. Now I'm wondering if it is helping, as I'm still getting symptoms. It does not seem to help much with the POTS, or standing tachycardia. My HR is still over 120 if I stand very long, as well, my hands continue to turn purple from blood pooling even if I'm just sitting.
I DO think it is helping with the the hypotension. While I've had a few minor swooping blackouts the last few days, I'm crashed, so it's not a huge surprise. I am having way way less blackouts over all. I can bend over and get a scoop of dog food for the dog, for example, or bend down to get something out of a lower cupboard, without a blackout and that is a definite improvement.
I'm not sure whether it's enough improvement that I'll stay on the drug? But I want to stay on it for a while, while I sort out what is the normal fluctuation of symptoms, and what is actual improvement.
You might ask about adding beta blockers to the florinef. I couldn't take florinef more than a few days, but now take midodrine which helps the dizziness a lot, but left the high HR to the point I couldn't sleep because my heart would race whenever I moved in bed. (I also have both kinds of OI). I now take both Zebeta and Inderal (the former long-acting, latter short acting) also. It is a weird thing to do - one medicine that raises blood pressure and two that lower it, but it has worked very well for me. I am not only less dizzy, HR under control, but am now getting slightly more energy (I think because I am not wasting it on my out of control heart). Good luck!
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