Gingergrrl
Senior Member
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@zzz Sorry for my delayed response here and please do not worry about trying to answer. I just wanted to thank you again for all the great feedback and give an update.
It is not so much "pain" (even though I might have used that word) as a squeezing tightness in my chest combined with shortness of breath as if I had run up several flights of stairs.
Thank you and that makes total sense. I think these episodes are part of PEM for me or at least PEM makes them worse.
I have a phone consult with her on Weds and am going to discuss my weight loss and diet issues as I have been following her food plan since June. It was based on the results of my food sensitivity testing to try to reduce inflammation so I totally understand why she did it. She's helped me in many ways (and was the first person to suggest testing for re-activation of EBV before I even knew about PR) but I've had some differences of opinion with her, too, and have decided if this phone consult is not productive, I will not be continuing with her.
You know, I really tend to agree with you and not just because I so desperately do not want to have two separate cardiac conditions but also b/c from a purely logical and statistical perspective, it seems they have to be related. Dr. K felt there was a good chance it is all autonomic from the EBV and that b/c my BP and blood volume are low, when I exert myself, there is not enough blood to perfuse the small vessels of the heart which leads to angina episodes but for a different reason than having random micro vascular angina without dysautonomia and ME/CFS. I really hope he turns out to be right.
My cardio wants me to take 400 mg of Mag per day but feels that the pill form is fine. My CFS doctor is concerned that Magnesium could further lower my BP (although he certainly did not tell me not to take it.) I have been taking a Mag supplement but am in the process of finding another that does not contain a whole bunch of other ingredients like mine does. I felt too ill to really pursue it today but am going to read everything you sent me re: the different ways to administer Magnesium. I plan to continue taking it and just need to find the right form.
I would love to try this but so far cannot find any doctor willing to prescribe them to me.
I am going to read everything you sent me and am interested in trying this since it does not need a prescription. So far, I have not needed to try the Nitro but I have not done any exertion for days.
My HR was 140 bpm as soon as I stood up from bed this morning and I knew it was not going to be a good day. For whatever reason, the Midodrine makes me incredibly sedated, more than any sleeping pill I have ever tried. You are not supposed to lie down for two hours after taking it which is torture for me. I waited two hours and then fell asleep for three hours. If Midodrine is supposed to keep you upright, it is not working for me.
I also suspect our BP machine is malfunctioning b/c it was giving readings all over the map today for both me and my husband. In the span of a few minutes I had readings with systolic ranging from low 90's up to 148 and diastolic ranging from 46 to 110. I also had a number of error readings. I think we need to buy a new BP machine and now I don't know what my real BP is but suspect it is still quite low.
From what I read on Midodrine, a potential side effect is low HR, not high HR, so I think my POTS reaction this morning was un-related as it has happened a million times before I ever tried Midodrine.
I hope so and wish I could be as positive as you! I felt pretty hopeless today and am so incredibly functionally impaired.
By "episode" here, I assume you mean the pain in your chest.
It is not so much "pain" (even though I might have used that word) as a squeezing tightness in my chest combined with shortness of breath as if I had run up several flights of stairs.
Yes, it is. During PEM, your whole body is working less efficiently, and it takes more energy to get anything done. More energy means more stress on the heart. If you actually try to do something during PEM, the stress on the heart just increases. For this reason, the threshold of activity for triggering an episode of angina is lower during PEM than otherwise.
Thank you and that makes total sense. I think these episodes are part of PEM for me or at least PEM makes them worse.
Hopefully, she will see that the importance of maintaining your weight overrides the importance of your dietary restrictions. Your body is in a major battle with EBV, you have full-blown ME/CFS, and you have the entire range of autonomic issues that are draining your energy. You need to keep your body well fueled with a decent energy reserve. Your diet has to support that. It's important to remember that your naturopath is not a CFS expert, and may not recognize the true effect that your diet is having on your health.
I have a phone consult with her on Weds and am going to discuss my weight loss and diet issues as I have been following her food plan since June. It was based on the results of my food sensitivity testing to try to reduce inflammation so I totally understand why she did it. She's helped me in many ways (and was the first person to suggest testing for re-activation of EBV before I even knew about PR) but I've had some differences of opinion with her, too, and have decided if this phone consult is not productive, I will not be continuing with her.
When you described your illness to me in detail earlier, you described a number of stages that you went through before you came to OMI. It would seem logical that the microvascular angina was just an extension of the existing symptoms. But how are they linked? Yesterday, I tentatively proposed that the microvascular angina was another manifestation of your dysautonomia, and Dr. K appeared to be proposing something similar, undoubtedly for the same reason I was - the idea that you would have two similar cardiac conditions from completely different causes just sounded terribly unlikely.
You know, I really tend to agree with you and not just because I so desperately do not want to have two separate cardiac conditions but also b/c from a purely logical and statistical perspective, it seems they have to be related. Dr. K felt there was a good chance it is all autonomic from the EBV and that b/c my BP and blood volume are low, when I exert myself, there is not enough blood to perfuse the small vessels of the heart which leads to angina episodes but for a different reason than having random micro vascular angina without dysautonomia and ME/CFS. I really hope he turns out to be right.
So I Googled "magnesium angina" and got a huge number of valid hits. It turns out that for the type of angina you have, a magnesium deficiency can actually trigger episodes that would otherwise not happen, and in many cases, a magnesium deficiency can be responsible for all episodes of angina. And a magnesium deficiency is trivial to fix. That's the good news.
My cardio wants me to take 400 mg of Mag per day but feels that the pill form is fine. My CFS doctor is concerned that Magnesium could further lower my BP (although he certainly did not tell me not to take it.) I have been taking a Mag supplement but am in the process of finding another that does not contain a whole bunch of other ingredients like mine does. I felt too ill to really pursue it today but am going to read everything you sent me re: the different ways to administer Magnesium. I plan to continue taking it and just need to find the right form.
Based on what we discussed before, magnesium injections given daily (at least in the beginning) would seem to be appropriate for you, and should improve all your cardiovascular problems.
I would love to try this but so far cannot find any doctor willing to prescribe them to me.
Take magnesium by nebulizer. It's easy, it's cheap, it's safe, it's effective, and no prescription is required. I gave you the details before; if you'd like them again, just let me know. But it would be good to start as soon as possible, for obvious reasons. In the mean time, I think that the nitroglycerin will work if you need it.
I am going to read everything you sent me and am interested in trying this since it does not need a prescription. So far, I have not needed to try the Nitro but I have not done any exertion for days.
My HR was 140 bpm as soon as I stood up from bed this morning and I knew it was not going to be a good day. For whatever reason, the Midodrine makes me incredibly sedated, more than any sleeping pill I have ever tried. You are not supposed to lie down for two hours after taking it which is torture for me. I waited two hours and then fell asleep for three hours. If Midodrine is supposed to keep you upright, it is not working for me.
I also suspect our BP machine is malfunctioning b/c it was giving readings all over the map today for both me and my husband. In the span of a few minutes I had readings with systolic ranging from low 90's up to 148 and diastolic ranging from 46 to 110. I also had a number of error readings. I think we need to buy a new BP machine and now I don't know what my real BP is but suspect it is still quite low.
From what I read on Midodrine, a potential side effect is low HR, not high HR, so I think my POTS reaction this morning was un-related as it has happened a million times before I ever tried Midodrine.
So good luck with everything, and I really think that this is going to turn out just fine for you.
I hope so and wish I could be as positive as you! I felt pretty hopeless today and am so incredibly functionally impaired.