My cardio thinks I have microvascular angina- need some feedback!!!

[Gingergrrl]

I am starting a new thread b/c my original thread re: my cardio hospitalizing me for tests got really long and went off in a million directions (my fault!) so I don't want anyone to have to wade through that thread to find my new dilemma & questions. As always, thank you in advance to anyone who responds and I am prepared for a variety of feedback- just please no personal attacks .

To give some background, I was diagnosed with ME/CFS at OMI which all started with mono/EBV in 2012. I still have high EBV titers (but negative on other viruses) but even at OMI, my CFS specialist was very concerned that I could also have a separate cardiac problem. In 2013, I started having tachycardia and autonomic problems and always have very low blood pressure. In Aug 2014, I had an exercise echo (treadmill test) which showed an ischemic response to exercise. This led my former cardio to refer me to my new cardio who specializes in autonomic issues. He said I was in the 25% most disabled of patients he saw and put me in the hospital for a bunch of tests including a CTA and TTT.

Long story short, I had no blockages on CT angiogram and no traditional heart disease. I was put on Midodrine, Potassium Supplement, and told to drink Pedialyte every day. I discontinued Florinef which never helped me. With Midodrine, my BP usually does raise and I can do more and even had a few good days.

----- Okay, now to current situation -----

The last few days, I've had a return of the worst episodes of shortness of breath and chest tightness/pain in my life. It is always brought on by exertion, usually walking too far, doing something with my arms, etc. I feel as if I had ran up several flights of stairs along with a feeling of a vice grip squeezing my chest. Last night my arm became numb during this episode which lasted for a good 30 min. I did not go to the ER b/c I had just spent five days in the hospital on a cardiac unit and knew I was seeing my cardio today for two week follow-up appt.

I typed a paragraph for him describing the episode in great detail and how these episodes never occur lying flat (which is why it did not happen in hospital.) Once the episode happens, I cannot eat b/c I barely feel that air can get through, as if there is a spasm in my chest, and I've gone from 130 to 108 lbs. He told me that he felt that I most likely have micro vascular angina (which has many other names like small vessel disease or Cardiac Syndrome X, etc.) He said there is no definitive test for it and he is not going to put me through more tests which I was relieved about. He said it is based on clinical symptoms and I was desperate for something to relieve the episode when it occurs (and right now I have nothing.)

He said this is separate from dysautonomia/low BP and need for Midodrine. Ironically, my Endo earlier this week suspected that I could have micro vascular angina and wrote a note to give my cardio but the two had not spoken and independently had the same idea. This is a diagnosis almost exclusively for women around my age as estrogen is dropping and often they find it when the woman has an abnormal ischemic treadmill test but normal CTA with no blockages. It means the tightness is in the tiniest vessels in the heart, which do not show up on the scan, but still prevent blood from perfusing the heart.

He wants me to try Nitroglycerine spray for a total of five times (the next five bad episodes) to see if it helps. He said if it does, it is diagnostic that we are on the right track. He said it is not the long-term solution and he had a lot of other ideas. I had concerns b/c Nitro lowers your BP and I am trying to raise my BP with Midodrine. He said the two can be taken together and one works on the venous system and one on the arterial system (don't quote me on that in case I got it wrong but the pharmacist confirmed they can be taken together.)

He said to only take Nitro sitting down and I can measure my BP. The first time I try it, I will only do it if my husband is home in case I have a bad reaction. He also ordered IV saline 1x/wk and increased my Midodrine from 2.5 mg 2x/day to 5 mg 2x/day. The 2.5 mg only raises my BP about 50% of the time and he said 5 mg is the more standard dose now that we know I tolerate it which I do. I see him again in three weeks and he promised me that he would call my CFS specialist today to discuss my case. He said this before and didn't do it but he seemed more serious this time.

I want to add that my new cardio is probably one of the best in the country, not b/c I am biased, I just lucked out in getting referred to him and have read up about him. Even though he is not a CFS expert, his knowledge of cardiac issues in women and in autonomic dysfunction is vast so I trust his opinion even though I did not like the news I received. I e-mailed my CFS doctor but have not heard back from him yet. I suspect though that he will concur with my cardio on this issue.

------- My questions:

I know you guys are not doctors (except Dr. Edwards and Butydoc!) but I want to get your feedback b/c this whole thing has really scared me and I am feeling quite hopeless right now.

1) Do I now have three diagnoses: ME/CFS, dysautonomia, and microvascular angina?

2) Or is microvascular angina sometimes part of CFS but maybe with a slightly different name or twist to it? I definitely have cardiac symptoms that seem above and beyond what I read on the board and always felt different in that way.

3) Or do I really have a cardiac/autonomic issue and not even have CFS? But then why would OMI tell me definitively that I do and why would ALL of this have started after mono/EBV and why do I still have very high EBV titers?

4) Has anyone on PR ever been diagnosed with Micro Vascular Angina (either as part of CFS or separately?) If so, how did you treat it and did it improve?

5) Has anyone taken Nitroglycerine (for any reason) and if so, how was it? I am especially curious if you already had low blood pressure and took it?

--- I am open to any and all feedback and opinions and words of hope. No matter how I try to write a short post, I just cannot seem to do it! Sorry this was so lengthy!

 

[Sushi]

@Gingergrrl

I know this is scary--anything cardiac is scary in my experience. I have had a number of weird cardiac symptoms myself but I am not familiar with this diagnosis. I'd guess that there will be others here who are, though.

As for the use of nitroglycerine, as I remember, Dr. Julian Stewart (Director, Center for Hypotension, NY Medical College) uses it for some of his patients. I have linked his professional webpage, but you should find articles by him on PubMed.

I am glad that you cardiologist will be talking with Dr. Kaufman as they can both benefit from the other's perspectives.

Sending you s!
Sushi

 

[xchocoholic]

Hugs. Sorry to hear that you're having a rough time. Not to scare you but multiple diagnosises can be common in me/cfs. I'm sure if you googled (rats - what's the term for co-existing diagnosises) you'd find the list. At 1 point I had 26. Yikes.

I don't know how helpful this will be but microvascular angina describes what I went thru when my estrogen dropped back in 2004 ish. I googled this and read that was common. The first time it happened I ended up in the ER where they gave me nitro. The side effect of the nitro was one of the worst headaches I ever had. So you may want to google this.

I never got a real answer for this (got typical idk answer) so I just suffered through each episode. I was just told not to call my dr anymore complaining of chest pain. They did a thorough heart eval at the hospital tho. The upside is that I lived. ☺

I realize you didn't ask but what is your plan to stop losing weight ? Did your dr have any suggestions ? Weight loss, esp rapid weight loss, can be hard on anyone but imho you may be getting too thin.

Fwiw, I still find that I will get mild chest pains if I eat too much of fat filled food like rib eye steak at one meal. My first severe attack came on after eating creamy potato soup. I don't remember much about my episodes now.

Hope this helps. It certainly sounds like you're in good hands.

Tc .. x

Ps. I had high viral titers for ebv and 2 others in 1990 and 2006 but was told they weren't important. I just remember my ebv was 7 or 700 ? times the norm. But based on what I've seen here, I've been reconsidering the importance of these for several years.

 

[zzz]

@Gingergrrl, I am so sorry to hear of these latest developments! This certainly comes as quite a surprise; as you know, I did not think you had microvascular angina. But I was not aware of the severity of the symptoms you described in your most recent post. The symptoms you describe here do indeed sound like they would most likely be explained by microvascular angina. Specifically, the vice grip squeezing your chest and the spasm when you try to eat would seem to be best explained by this condition. But the fact that it apparently arose with your other conditions may actually be a plus. This should be clear why in my answer to your questions at the bottom of your post:

Do I now have three diagnoses: ME/CFS, dysautonomia, and microvascular angina?

No; dysautonomia is a common part of ME/CFS. Although it manifests in various different ways, virtually everyone with a severe case of ME/CFS has it (including me).

Or is microvascular angina sometimes part of CFS but maybe with a slightly different name or twist to it?

No; angina of any type is normally not considered to be a part of ME/CFS.

Or do I really have a cardiac/autonomic issue and not even have CFS? But then why would OMI tell me definitively that I do and why would ALL of this have started after mono/EBV and why do I still have very high EBV titers?

You definitely have ME/CFS for all the reasons you stated. But it seems a little too much of a coincidence that you would get ME/CFS stemming from an EBV infection plus microvascular angina (which is a completely unrelated condition) at exactly the same time. Although your cardiologist said that this is separate from the dysautonomia that triggered your low BP and related symptoms (and I'll certainly take his word for it), it might be possible that a different aspect of dysautonomia triggered off your microvascular angina, and the fact that this condition involves spasms of the microvasculature would seem to be consistent with this possibility. The autonomic nervous system (like most things in the body) is very complex, and there are so many ways it can malfunction. Also, due to the size scale, microvascular angina is not fully understood. However, this hypothesis is really just a guess, trying to explain the simultaneity of your conditions. If it's correct, one would expect that your microvascular angina would go away as your dysautonomia in general subsided. But whether any of this is true or not, what your cardiologist says to do for now certainly makes complete sense. The rest should become clearer with time.

The complex interaction of the autonomic nervous system with the cardiovascular system in the presence of ME/CFS, along with the increased severity of your symptoms, is probably one of the big reasons your cardiologist is more interested in talking to your CFS specialist now.

Has anyone taken Nitroglycerine (for any reason) and if so, how was it?

It just so happens that I did take it (more precisely, Isordil, which is functionally a longer acting version of nitroglycerin). I took it to treat my first episode of ME/CFS back in 1990, as I was getting the same cardiac and breathing problems as my friend, who had severe cardiac issues. The Isordil not only got rid of those issues, but it got rid of all my ME/CFS issues, and I went from being completely bed bound to back at work full time in three days. Boy, was I surprised.

I later found out that nitroglycerin is on Dr. Goldstein's list of "miracle meds". It works like that sometimes. Other times, it may improve your ME/CFS symptoms anywhere from slightly to greatly. There's no fundamental reason you should have a problem taking it when you have ME/CFS.

As @xchocoholic mentioned, nitroglycerin will also give you a whopper of a headache.

My blood pressure wasn't particularly low, but the Isordil didn't lower it any further. For a lot of the antihypertensive medications, they'll lower your blood pressure if it's too high, but if it's normal, it won't drop any further.

There's one other thing to consider here. I had mentioned to you that I had some bad cardiac problems last March (though nothing compared to yours!) and that adding a parenteral magnesium supplement got rid of them. Although you are known to be magnesium deficient, your symptoms definitely sound much more than could be accounted for by magnesium deficiency, which is why Dr. C is not considering magnesium deficiency as a possible source of your problem. Nevertheless, a magnesium deficiency can definitely make cardiac problems worse. In conjunction with Dr. C's therapy, getting those magnesium injections you were talking about might be a very good idea.

So once again, you can consider yourself very fortunate to be in the hands of such a skilled cardiologist, as well as your CFS specialist. They certainly seem to be doing all the right things now. I'm really sorry you're going through all this, and I really hope that you feel a lot better very soon.

 

[PNR2008]

Dr. Goldstein gave me nitro and I felt a headache coming on and like the ceiling was coming down. It was established that nitro failed to help my CFS/ME.

 

[Gingergrrl]

@Gingergrrl I know this is scary--anything cardiac is scary in my experience. I have had a number of weird cardiac symptoms myself but I am not familiar with this diagnosis. I'd guess that there will be others here who are, though.

As for the use of nitroglycerine, as I remember, Dr. Julian Stewart (Director, Center for Hypotension, NY Medical College) uses it for some of his patients. I have linked his professional webpage, but you should find articles by him on PubMed.

I am glad that you cardiologist will be talking with Dr. Kaufman as they can both benefit from the other's perspectives. Sending you s! Sushi

@Sushi You are so right about cardiac stuff and this has been really scary. I was close to calling 911 last night as I had no effective way to make the episode stop. We had bought some stuff at the Container Store to organize our bathroom (I never lifted or carried anything) and we parked right by the elevator so I literally went into one store and came home. I felt the trip went well and was doing okay.

I was in the bathroom with my step daughter holding one container we'd bought (which was not heavy) trying to get the plastic off. I should have sat down to do this but over-estimated my ability and stood up holding three containers trying to get the plastic off. By the end of the third one, I was gasping for air and the episode started. Once it starts, there is nothing I can do to stop it which is why I think Dr. C wanted me to try the Nitroglycerin spray. He said either it will work or not and then we will know. I did not have an episode tonight (b/c I have done virtually nothing since the appt) and they seem to come every 2-3 days. I almost think these episodes are part of my PEM if that is possible?

Thank you for the reference to Dr. Julian Stewart and I will research it tomorrow.

Sadly, Dr. C did not call Dr. K as much as I tried. He wrote his ph# in my chart and promised me he would call him today. I had e-mailed Dr. K prior to the appt to coordinate blood tests and told him that my Endo had inquired about micro vascular angina and from his answer tonight, he clearly had not talked to my cardio. He had a slightly different take on things which made it even more confusing for me. He still thinks this could all be autonomic and improve with the increased Midodrine. I haven't told him about the Nitro yet and not sure what he will think. I wish to God, I could get these two doctors to talk to each other but have been trying for almost a month. They are both brilliant and they each hold half of the puzzle and if they could talk, they could reach a consensus on what I should do. I have offered more than once to pay for their time but that does not seem to be the issue.

 

[Gingergrrl]

@xchocoholic

Hugs. Sorry to hear that you're having a rough time. Not to scare you but multiple diagnosises can be common in me/cfs. I'm sure if you googled (rats - what's the term for co-existing diagnosises) you'd find the list. At 1 point I had 26. Yikes.

I think co-morbid is the word you are looking for and you are not scaring me at all. I am already scared and when I talk about it on PR and get info, I always feel that knowledge is power and you guys give me ideas, support, and strength. I know I have thyroid/Hashimoto's co-morbid with CFS but it is not scary to me and even if the virus triggered the thyroid part (I will never know) I do not think or worry about it like the cardiac stuff.

I don't know how helpful this will be but microvascular angina describes what I went thru when my estrogen dropped back in 2004 ish. I googled this and read that was common. The first time it happened I ended up in the ER where they gave me nitro. The side effect of the nitro was one of the worst headaches I ever had. So you may want to google this.

It could have been and am sorry you went through all this. I have Googled it (like I do with everything) and am prepared for it to give me a massive headache. I am also scared of the potential drop in BP but hoping if I am taking the higher Midodrine that it won't be too bad.

I realize you didn't ask but what is your plan to stop losing weight ? Did your dr have any suggestions ? Weight loss, esp rapid weight loss, can be hard on anyone but imho you may be getting too thin.

I don't really have a plan for this and initially I was overweight (I am only 5'0) but now I am at a point that I do not want to lose any more weight and certainly not this rapidly. I am on this really restricted diet from my naturopath (who I have not seen since July) but I made a phone appt with her for next week and am going to update her on everything especially the food/weight loss issues and see what she advises.

Ps. I had high viral titers for ebv and 2 others in 1990 and 2006 but was told they weren't important. I just remember my ebv was 7 or 700 ? times the norm.

I know there are many opinions on this but for me this entire thing so clearly began with mono/EBV that I am hoping if I can get the titers lower, it will improve my overall symptoms. I know there is no guarantee but I am about 2.5 mos into a six month trial on Famvir and definitely going to continue. I feel like I have nothing to lose from it and if it can decrease the viral load, it is one less thing for my body to have to deal with.

Thank you again for all your support.

 

[Gingergrrl]

@zzz

Gingergrrl I am so sorry to hear of these latest developments! This certainly comes as quite a surprise; as you know, I did not think you had microvascular angina. But I was not aware of the severity of the symptoms you described in your most recent post. The symptoms you describe here do indeed sound like they would most likely be explained by microvascular angina. Specifically, the vice grip squeezing your chest and the spasm when you try to eat would seem to be best explained by this condition. But the fact that it apparently arose with your other conditions may actually be a plus. This should be clear why in my answer to your questions at the bottom of your post

Thanks and I really value your opinion and anything that can be a plus, I will take it!

No; dysautonomia is a common part of ME/CFS. Although it manifests in various different ways, virtually everyone with a severe case of ME/CFS has it (including me).

No; angina of any type is normally not considered to be a part of ME/CFS.

That is what I thought and often I think I did not talk about angina type symptoms on here as much b/c it seemed like most PWC's do not experience them (although I could be wrong about that.)

You definitely have ME/CFS for all the reasons you stated. But it seems a little too much of a coincidence that you would get ME/CFS stemming from an EBV infection plus microvascular angina (which is a completely unrelated condition) at exactly the same time.

I agree although the entire thing did not start at the same time and the angina type shortness of breath and chest pain really started around June (when I joined PR) and each month it has gotten worse. I had mono/EBV in March 2012 so it is over two years later when this started. It is so hard to know if it is a progression of the illness or if I really have this separate new thing? Can I really be that unlucky, but I guess I can.

Although your cardiologist said that this is separate from the dysautonomia that triggered your low BP and related symptoms (and I'll certainly take his word for it), it might be possible that a different aspect of dysautonomia triggered off your microvascular angina, and the fact that this condition involves spasms of the microvasculature would seem to be consistent with this possibility.

I'm not sure if I am actually having spasms, it just feels that way. I think my doctor views them as separate b/c he has patients with severe dysautonomia and patients with micro vascular angina and they are separate entities. I still feel he knows next to nothing about CFS. He has no judgement about it, he just doesn't know much about it.

The complex interaction of the autonomic nervous system with the cardiovascular system in the presence of ME/CFS, along with the increased severity of your symptoms, is probably one of the big reasons your cardiologist is more interested in talking to your CFS specialist now.

They still didn't talk but still hoping they will.

It just so happens that I did take it (more precisely, Isordil, which is functionally a longer acting version of nitroglycerin). I took it to treat my first episode of ME/CFS back in 1990, as I was getting the same cardiac and breathing problems as my friend, who had severe cardiac issues. The Isordil not only got rid of those issues, but it got rid of all my ME/CFS issues, and I went from being completely bed bound to back at work full time in three days. Boy, was I surprised.

Wow, I have never heard of that before! How long did you take nitro and how long did your recovery period last? What led you to stop taking it? Was it side effects or did it just stop working? Sorry I ask so many questions and I am still hoping that by sharing my whole experience and all your great feedback, it will help someone else down the line. He did want me to start with a long acting kind before we even knew if one spray (dose) would help me.

I later found out that nitroglycerin is on Dr. Goldstein's list of "miracle meds". It works like that sometimes. Other times, it may improve your ME/CFS symptoms anywhere from slightly to greatly. There's no fundamental reason you should have a problem taking it when you have ME/CFS.

Thanks!

My blood pressure wasn't particularly low, but the Isordil didn't lower it any further. For a lot of the antihypertensive medications, they'll lower your blood pressure if it's too high, but if it's normal, it won't drop any further.

With the Midodrine, most of the time I can get my BP to around mid 90's to 100/mid-60's. So with the increased Midodrine starting tomorrow, maybe it will go even higher?

Nevertheless, a magnesium deficiency can definitely make cardiac problems worse. In conjunction with Dr. C's therapy, getting those magnesium injections you were talking about might be a very good idea.

I have asked both doctors but so far neither will prescribe me magnesium injections. But I do take Magnesium supplements which is the best I can do for now. It must be really outside the norm of medicine? Maybe my naturopath will do it?

So once again, you can consider yourself very fortunate to be in the hands of such a skilled cardiologist, as well as your CFS specialist. They certainly seem to be doing all the right things now. I'm really sorry you're going through all this, and I really hope that you feel a lot better very soon.

Thank you and I really appreciate it. Talking with all you guys makes me feel less scared and overwhelmed.

 

[Gingergrrl]

Dr. Goldstein gave me nitro and I felt a headache coming on and like the ceiling was coming down. It was established that nitro failed to help my CFS/ME.

@PNR2008 Did you take the Nitro as a general treatment for CFS or were you also having some type of angina/chest pain? I am not actually expecting it to help my CFS in general but am hoping it will help the angina type episodes. Or in a way I am hoping it doesn't help which rules out angina and leads me back to autonomic causes which are less scary to me.

 

[xchocoholic]

Hi @Gingergrrl . I'm not awake yet but I added a line to what I said about my viral titers. I've been reconsidering the importance of these for several years because of all the pwcs who are treating these. Thanks. X

 

[Sasha]

@Gingergrrl -

Really sorry you're having to go through this on top of your ME.

I don't know anything about cardio stuff and forgive me if this has come up on this long thread already but you mentioned that things are worse for you if you do things with your arms. I also have OI and read that if you lift your arms above the level of your heart it causes venous pooling and makes your OI worse. I wonder if that's part of what's happening with you. If so, you could get other people to reach stuff out of cupboards, down from shelves at the store, etc. or rearrange things at home so that you don't have to reach up to get what you need.

 

[PNR2008]

@Gingergrrl Jay Goldstein was treating me for CFS/ME not any heart problems but on me it still didn't work.

I'm sorry you are going through this.

 

[Ema]

I don't know anything about this except for what you wrote, but if the cause is at least partly due to falling estrogen, why not replace the estrogen? Estrogen is known to be protective of the heart.

Good luck!

 

[Gingergrrl]

Hi @Gingergrrl . I'm not awake yet but I added a line to what I said about my viral titers. I've been reconsidering the importance of these for several years because of all the pwcs who are treating these. Thanks. X

@xchocoholic I hope you didn't modify your post b/c of me and I strongly support those who do not believe in anti-virals as a treatment. I view it as an experimental treatment but I chose to try Famvir b/c the med has been on the market for a long time for treatment of herpes and shingles and EBV is "Herpes 4." I believe in the future (maybe decades away) that they will regularly prescribe anti-virals for mono from EBV but we are just not there yet.

I also saw my life slipping away from me from the illness so I was willing to try an anti-viral under the guidance of OMI who has conducted a lot of research and would never have tried it on my own. Lastly, in case the virus is in my heart (which no way to determine without a biopsy which I will not be having) then Famvir can attack it there as well. But I absolutely support those who have other opinions!

@Gingergrrl -
Really sorry you're having to go through this on top of your ME. I don't know anything about cardio stuff and forgive me if this has come up on this long thread already but you mentioned that things are worse for you if you do things with your arms. I also have OI and read that if you lift your arms above the level of your heart it causes venous pooling and makes your OI worse. I wonder if that's part of what's happening with you. If so, you could get other people to reach stuff out of cupboards, down from shelves at the store, etc. or rearrange things at home so that you don't have to reach up to get what you need.

@Sasha, Thank you so much for your support and I just made the connection in another thread, just a few days ago, that lifting your arms above your head relates to OI. I literally never made that connection before! I do try to get help with as much as I can but sometimes I am home alone or I really think that I am capable of doing something that I view as minor and then I turn out to be wrong. There is so much trial and error involved and I am so much sicker than I was even three months ago.

@Gingergrrl Jay Goldstein was treating me for CFS/ME not any heart problems but on me it still didn't work. I'm sorry you are going through this.

@PNR2008 Thanks and I was just curious if Dr. Goldstein, in addition to treating you for ME/CFS, gave you the Nitro b/c you also had a cardiac issue or if he gave it purely as a treatment for CFS. It sounds like it is the latter which is interesting to me. I am sorry it did not work for you and thank you again for your support.

I don't know anything about this except for what you wrote, but if the cause is at least partly due to falling estrogen, why not replace the estrogen? Estrogen is known to be protective of the heart. Good luck!

@Ema, Prior to three days ago, I had never even heard of micro vascular angina so I am just learning about it myself. Even though my cardio strongly suspects it, he did not definitively say that I had it yet. My Endo mentioned the estrogen connection but I am not sure if this is just a theory or proven? Micro vascular angina is a rare cardiac issue just in women and along with CFS, does not have a lot of research or support behind it. These seem to be the only diagnoses that I ever get. I read that women show up at the ER during an attack and are told it is "Just anxiety" so I don't think it is a diagnosis with a lot of respect behind it. What else is new?!!!

My estrogen is appropriate for my age (I just turned 44) so I am honestly not sure if supplementing it would relate to it? I see my cardio again in three weeks and will ask him b/c it is a good question. Although when I have the next few episodes and take the Nitro, if it doesn't help, then I think it rules out this diagnosis (meaning it is not a vascular problem.) I am confused at the moment and still a bit overwhelmed!

 

[xchocoholic]

@xchocoholic I hope you didn't modify your post b/c of me and I strongly support those who do not believe in anti-virals as a treatment. I view it as an experimental treatment but I chose to try Famvir b/c the med has been on the market for a long time for treatment of herpes and shingles and EBV is "Herpes 4." I believe in the future (maybe decades away) that they will regularly prescribe anti-virals for mono from EBV but we are just not there yet.

I also saw my life slipping away from me from the illness so I was willing to try an anti-viral under the guidance of OMI who has conducted a lot of research and would never have tried it on my own. Lastly, in case the virus is in my heart (which no way to determine without a biopsy which I will not be having) then Famvir can attack it there as well. But I absolutely support those who have other opinions!

...

Hi. Thanks but I changed it to accurately describe my take on the use of antivirals. Maybe yes. Maybe no. I'm open to learning about these.

I was thinking but didn't say that your weight loss assuming it was fat loss could cause your estrogen to drop. Estrogen is found in fat. And maybe this drop is causing your angina. It's just a guess.

Fwiw, I don't know why but I feel horrible, mostly weak, every time I drop weight too fast now.

Hope you feel better soon. X

 

[Gingergrrl]

@xchocoholic Thank you and you brought up a really good point about my rapid weight loss and I am going to ask my doctors about that too. And it was definitely all fat loss as I have zero muscle!

 

[Gingergrrl]

I wanted to add that I was able to update my CFS doctor re: the new potential diagnosis and trial of Nitro (which I haven't tried yet b/c no episode since Thurs night.)

His take on it was so hopeful that it changed my entire perspective. He said I definitely have episodes of angina which concerned him since he first met me and this is why he pushed for cardiac tests (which he did, God bless him.)

However he thinks my angina "could" be due to my combination of POTS, very low BP and low blood volume which could be causing the micro vascular spasms on exertion. He thinks increasing the Midodrine and getting my BP up, etc, could allow the angina to "self correct."

He felt I should increase the Midodrine first before trying Nitro. So both doctors even though they have not spoken are in agreement re: increasing the Midodrine.

So today I did a small increase from 2.5 to 3.75 mg just to be cautious and it went well (and my BP is 105/70) so tomorrow I will increase to the full 5 mg.

For whatever reason Midodrine makes me feel very calm and it is easier to breathe. I have also done nothing exerting today so might not be a true test.

Just want to add that I am only speaking about my own unique situation and nothing I say should ever be taken as medical advise!!!

 

[liverock]

Hi @Gingergrrl , I remember you saying you were hypothyroid once. Are you now clear of that, because having hypothyroidism over a long period could cause heart problems including EBV pericarditis.

Take care.

 

[Gingergrrl]

@liverock I have Hashimoto's (both antibodies) and my TSH was right on the border at 3.8-4.0 about a year ago. But with low dose Armour Thyroid for now almost one year, my TSH has consistently remained between 1.0-2.0 and never higher. My T3 and T4 also now in the perfect range. The antibodies remain high but I have been gluten free since Jan which can help them lower. No doctor including my Endo thinks my thyroid is behind my cardiac/autonomic stuff but thank you for taking the time to ask me the question and I am open to literally anything that could shed light on my situation.

 

[zzz]

@Gingergrrl, I hope you've been able to relax a bit today. I do have some good news here; I think I'm finally beginning to see how everything ties together. If I'm right, your situation shouldn't be too hard to treat.

I was in the bathroom with my step daughter holding one container we'd bought (which was not heavy) trying to get the plastic off. I should have sat down to do this but over-estimated my ability and stood up holding three containers trying to get the plastic off. By the end of the third one, I was gasping for air and the episode started.

By "episode" here, I assume you mean the pain in your chest.

I almost think these episodes are part of my PEM if that is possible?

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.

I wish to God, I could get these two doctors to talk to each other but have been trying for almost a month. They are both brilliant and they each hold half of the puzzle and if they could talk, they could reach a consensus on what I should do. I have offered more than once to pay for their time but that does not seem to be the issue.

No, the issue is most likely that they have no time to pay for. That's the flip side of having the top docs - their schedules are unpredictable, even by them. And things keep coming up to fill any little gap that arises in the schedule.

I do not want to lose any more weight and certainly not this rapidly. I am on this really restricted diet from my naturopath (who I have not seen since July) but I made a phone appt with her for next week and am going to update her on everything especially the food/weight loss issues and see what she advises.

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 agree although the entire thing did not start at the same time and the angina type shortness of breath and chest pain really started around June (when I joined PR) and each month it has gotten worse. I had mono/EBV in March 2012 so it is over two years later when this started. It is so hard to know if it is a progression of the illness or if I really have this separate new thing?

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.

I'm not sure if I am actually having spasms, it just feels that way.

I just used the word "spasms" because this is how microvascular angina is postulated to work. It makes sense that it would feel that way too, then.

I think my doctor views them as separate b/c he has patients with severe dysautonomia and patients with micro vascular angina and they are separate entities.

The more I thought about my tentative dysautonomia hypothesis, the less I liked it; it just didn't seem to fit naturally. So last night, I decided to throw out that hypothesis, and acknowledge that microvascular angina was separate from the dysautonomia. Yet I remained convinced that microvascular angina was still part of your ME/CFS as a whole. But how were they linked? How?

I wracked my brains for a long time, trying to figure out what that link was. Finally, I came to the following conclusion: I didn't know enough medicine to answer the question.

The solution to that was obvious: I needed to learn more medicine. And when you need to learn medicine quickly, few things beat The Google Institute of Medicine. So today, first I searched for "CFS angina". As I expected, I didn't get many valid hits, but what I didn't expect is that the word "magnesium" popped up a couple of times. Hmm. As I mentioned in my previous post, I knew that a magnesium deficiency could aggravate angina, but there were hints here that it could do more than that. 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.

But why hadn't your doctors caught on to this? As for Doctor C,

I still feel he knows next to nothing about CFS. He has no judgement about it, he just doesn't know much about it.

That's basically the answer. But he did test you for a magnesium deficiency, found one, and treated you for it.

Once.

Normally, that's enough. For example, if you have an alcoholic who is typically depleted in magnesium, you can give him (or her) a single magnesium shot, and as long as they stay away from alcohol, they'll be fine.

Unfortunately, it doesn't work that way in ME/CFS, and Dr. C was unlikely to know this. 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 have asked both doctors but so far neither will prescribe me magnesium injections. But I do take Magnesium supplements which is the best I can do for now. It must be really outside the norm of medicine?

It's sort of on the edge. Doctors know how to do it, but most of them are unaware of how useful these injections can be. I would have thought that Dr. K would have known, though.

Maybe my naturopath will do it?

I would definitely expect that. Your naturopath should be very happy to prescribe you magnesium injections. Just be sure that she prescribes you daily injections that you can do at home, and preferably uses Dr. Cheney's formula. If for some reason she won't, or it's very expensive, or there's some other problem, you can always do what I did when my doctor refused to have anything to do with magnesium: 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 need to cut this post short (not that it's short) because Uncle Sam is breathing over my shoulder; he wants his money. If you have any questions, please feel free to ask; otherwise, it may be a few days before I can get back here.

So good luck with everything, and I really think that this is going to turn out just fine for you.