712042 tn?1254572809

The Downside of MVD and Upside of PETN

The downside is that your life is completely changed and the focus becomes avoiding pain and potential damage to the heart, even if that potential is small.
One does become an expert in dusting. And an expert in MVD symptom managment. I know exactly how my heart and this microvascular dysfunction will play out with me if I do not keep a total and perfect management of my cardiac demands. And even with that, the ischemic attacks occur.
I remain otherwise healthy.
I post here less often as after almost 3 years,nothing really changes except that when the attacks occur, they are much more painful and of longer duration and it takes more time to recover from them, days and weeks.
My meds have changed with the recent addition of Bystolic to help with the signs of lower leg swelling and abdominal tightness secondary to the extra fluid. A prior trial of Bystolic for help with angina was ineffective. I added a narcotic, Fentanyl lollipop to use to get me pulled out of the more painful attacks. Time is critical and I hit those harder attacks with immediate nitro spray, xanax and the narcotic. I have continued to avoid ERs and hospitalizations.
All other meds are the same and my nitro dosage has not changed. My lipids are wonderful, my weight loss is sustained. There is no exercise and walking 60 feet slowly is about the extent of my sustained motion.
My concern: beyond an MI or stroke I worry most about nitrogylcerine tolerance atho' I can't say I have anything to support that worry. Nitro works consistently 24/7: 0.16 mg daytime, and 0.4mg at nightime. Each needed extra spray works perfectly.
I am researching the possibility of a new drug for me, PETN, as it is a pure organic nitrate with no tolerance and enhances effectiveness and co-use of nitroglycerine and acts by upping the release of nitric oxide which remains to be the best theory and etiology for me: lack of nitric oxide.
So I remain proactive with this MVD and try to assist others.This MVD is in your face everyday so I may as well stay on top of how to manage it. A very nasty diagnosis as I feel just fine....it's motion that gets me.Joan.
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