I wanted to post an update re: Nitro since I ended up trying it again (0.3 mg sublingual version) which is the third time I have tried it total.
I've been having some significant improvements in raising my BP with a low dose of Midodrine (1.25 mg 2x/day) and Prescript Assist probiotic. Also, a dear friend
from PR discovered a possible reason that my systolic BP was 80-82 every morning might be b/c I have been taking Zyrtec every night for histamine issues. I've taken Zyrtec throughout my life with no problems so never suspected it but in the post-marketing info it lists "Severe hypotension" so I stopped the Zyrtec and my AM systolic BP was back in the mid 90's! I am now considering the child version of Zyrtec b/c I am still very fearful of histamine reactions.
With the Midodrine my systolic BP was around 100-106 the last few days and I could breath better, walk further without the wheelchair and do more activity. So 2-3 days in a row I overdid it (but to explain "overdoing" it is still about 1/100th of my prior life.) It meant walking to the car without a wheelchair (2-3 min walk) or riding longer in the car to go on some errands, staying up to do homework with my daughter, having more conversations with friends, getting more paperwork done, etc. We are not talking about anything outrageous!
Yesterday, I was home alone and tried to open a bottle of water that was extremely tight. I have virtually no arm strength (from prior Levaquin injury, pinched nerve in neck, and ME/CFS itself.) But I convinced myself I could open the bottle b/c "I was better now from Midodrine" (I guess I was delusional.) I used all the strength I had to open it and then got short of breath w/chest pressure. It lasted 30-40 min until my husband got home and since my BP was still above 100, I decided to try the Nitro.
It worked in about 18-20 min (similar to last time) and my breathing normalized. However, I later got a feeling of really bad indigestion (similar to when I used to attempt taking fish oil which I cannot tolerate.) Can Nitro cause indigestion or is this unrelated? I started to get scared that I was having a serious heart problem but it seemed unlikely since I had already taken the Nitro and my cardio is convinced that my entire cardiac issues are autonomic. I didn't want to go to the ER b/c in prior episodes (in which I felt even worse) they were completely useless and even mean.
I finally ended up eating dinner and my breathing, HR and BP remained normal and just a feeling of indigestion. All I can think of if it is not from the Nitro, is that it could be from something I ate (since I am attempting to drink decaf coffee again) or from my new probiotic, or from the oil of oregano that I have been taking again daily which is strong.
I am always curious to hear different interpretations or hoping this info will help someone else down the line. My overall experience with Nitro is that it works when I have these episodes which are always triggered by some kind of over-exertion or over-doing it. But it does not work in 2-3 minutes b/c I do not have traditional angina (no blockages on CT scan) so it must be working in another mechanism similar to what Dr. Jay Goldstein reported or what Fluge & Mella are currently working on (in trying to patent new NO drug.) I am still unclear if I have some form of micro-vascular angina?
Thanks to all who are still reading