I went to my appointment earlier today and this is what was said. He thinks that my on/off swelling of hands/feet/ankles/nose is an allergy to something. Before I would break out in hives in my arms, abdomen or arms for no apparent reason, lots of testing was done but nothing new was ever found. The hives have stopped for about 6 months and now the swelling. He figured that if it was a reaction to the Clonidine it wouldn't go away, same if it was a food allergy I would have other symptoms too and I don't, it is just the swelling. He suggested to take an antihistamine daily and see if it helps.
Another new thing I had been doing for about 3 months now was drinking a warm cup of milk every morning, the swelling started about a month ago, so he wants me to stop the milk just in case.
I also mentioned that I'm still quite tired, so he thinks that my BP is now too low for me, I was at 117/72 at his office today, so he wants me to start reducing the clonodine slowly and see if it makes a difference. Before I was taking 0.075mg 4X/day now I will take 0.075mg 3x/day and 0.050mg at lunch, which is when I notice I'm the most tired. I tried it today and I was able to go for a short walk instead of falling asleep as soon as I was done my lunch, so it's hopeful.
He also figured that my P.O.T.S symptoms are probably getting better but the Clonidine might be supressing the sympathetic system too much and making it look like it is from the POTS, so lowering a bit will tell us if that is true, I sure hope so!
My ferritin is still quite low which would account for the fatigue too, so I have a few things to deal with before we know what it is from. I go for an uterine ultrasound next week and then to see a Gynecologist the week after that to see the possibility of an endometrial ablation.
My heart rate is still quite fast but it is not making me feel short of breath, I don't have the chest pressure either, headaches are now minimal although I have one today but it is warmer were I live today - not looking forward to summer heat.
So that's my update, hope this finds you all feeling a bit better!
Karin