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I took Nitroglycerin tonight and it helped! What does this mean?

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by Gingergrrl, Mar 28, 2015.

  1. Gingergrrl

    Gingergrrl Senior Member

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    I am tagging @zzz before I type any further since he had a significant remission from Nitroglycerin in years past. I really want to hear your opinion on this one, zzz, and everyone else's too.

    To give some background, my most debilitating symptoms from ME/CFS have been cardiac and autonomic starting with tachycardia & POTS, low BP, and in the past year severe shortness of breath (SOB) with any exertion and more recently chest pain. My newest cardiologist hospitalized me for five days back in Sept 2014 and after several tests, felt my symptoms were all autonomic. He later decided that I might have "micro-vascular angina" on top of the autonomic symptoms and prescribed Nitroglycerin.

    My ME/CFS specialist has been very concerned with the recent increase in my SOB and chest pain and started pondering again if I may have micro-vascular angina or another cardiac issue as part of my ME/CFS. We discussed viruses in the heart (b/c I am positive for EBV, VZV, coxsackie & echovirus) but my cardio is adamant that I do not have myocarditis. We also discussed cardiomyopathy (but all my echocardiograms are completely normal.)

    Long story short... :D... both doctors wanted me to try the Nitro during an episode to see if it helped and felt this would be a diagnostic clue. I was terrified of the Nitro spray (not sure why) so my ME/CFS doctor got me sublingual Nitro at a lower dose 0.3 mg. A few months ago I tried it during an episode and it did not help at all.

    However, tonight, I had a horrible episode (after a long week of horrible episodes) and decided to give it a second try since I am seeing my cardio next week and he is going to ask me about this. I had walked from my bedroom to the living room for dinner and became so short of breath that I couldn't even speak and got chest pain going from my chest to my back.

    So, I took the sublingual Nitro and lied down on the couch (and my husband and daughter there so I was not alone in case something went wrong.) I was expecting either no reaction or something terrible to happen but within 15 minutes, I felt completely better and was able to walk back to the table and eat dinner. Normally, I would have had to lie flat for 1-2 hours to re-gain that level of breathing that I could talk and eat!

    So, it appears the Nitro worked and I am feeling better right now than I have all week. Does this imply that I do have micro-vascular angina? Is it not an autonomic or low blood volume issue after all? I was literally just diagnosed with high histamine and mast cell disorder and my husband read on-line that Nitro can help these issues!!! I also know from @zzz that Nitro can help ME/CFS per Dr. Goldstein. So I am really confused what to make of all this but am so happy to be breathing normally right now.

    Thanks to everyone who is still reading :thumbsup: :trophy: :star:
     
  2. AndyPandy

    AndyPandy Making the most of it

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    Wow, great that it worked for you. Giving Nitro a gold star! :star:
     
  3. Sushi

    Sushi Senior Member Albuquerque

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    Great that it helped! Dr. Julian Stewart has had some success using nitroglycerin in dysautonomia though he works with patients under 20.
     
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  4. zzz

    zzz Senior Member

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    What this means is that nitroglycerin can sometimes be helpful for you in these episodes - sometimes extraordinarily so. This is certainly great news, but the positive effects of nitroglycerin say nothing about what is at the root of your problem. As you know, I used Isordil (which is like nitroglycerin except longer lasting) to achieve a long-term complete remission from ME/CFS. I used it because I was having cardiac symptoms identical to those of a friend of mine who had known heart problems. The Isordil cleared up not only my cardiac symptoms, but all my ME/CFS symptoms.

    After my final relapse 17 years ago, for the most part, I haven't had cardiac symptoms. But I have found that a few times when I have had them and they were bad, the Isordil would often make me feel much better, many times relieving my symptoms in very much the same way that you describe. And my problems were definitely autonomic, as they were completely cleared up by magnesium treatments over a period of months starting a year ago.

    The fact that all your autonomic symptoms were temporarily alleviated is consistent with both my experience and the hypothesis that this is all an autonomic condition. I think it's excellent that the nitroglycerin worked for you, and now you have one more medicine that you can use when you have a severe reaction. But I don't see any reason to think that this means you have an underlying cardiac problem any more than I did, especially since nitroglycerin hadn't worked for you before.

    Why it works sometimes and not others is a mystery; I have found the same thing with Isordil. But this is very consistent with the neurological effects of the nitrates as documented by Dr. Goldstein, and to me it gives added weight to the autonomic hypothesis.

    In any case, it's great to hear that this worked for you! :thumbsup: But it doesn't mean that you have to worry about your heart.
     
    Last edited: Mar 29, 2015
  5. Gingergrrl

    Gingergrrl Senior Member

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    @Sushi Wow, this guy sounds amazing and is the first cardiologist I have read about who seems to truly understand autonomic and ME/CFS related issues. Of course he is on the opposite coast than me (and he works with children) but do you think he would ever do a phone or Skype consult? I would love to talk to him as I can already tell he has a much better grasp of these issues than my current cardio. I have been trying to find a cardio in the US who knows these issues who (hopefully!) does Skype consults. Have you ever seen or talked to him? Is he still in practice?
     
  6. Gingergrrl

    Gingergrrl Senior Member

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    @zzz

    That was my take on it as well. I am still unclear if this proved it is autonomic/neuro based vs. micro-vascular angina, vs. virus in the heart, vs. histamine/MAST cell, vs. pure ME/CFS (cellular/mitochondrial issue) etc.

    I am still feeling better four hours later but am expecting this to be gone tomorrow and not counting on a full remission like you had LOL.

    How does Isordil compare to a Nitroglycerin patch? The reason I ask is that my cardio said if the Nitro helps me, then he can prescribe me a patch (but wouldn't do this if I never tried the Nitro or if it didn't help me.) I know beyond a shadow of a doubt that my cardio will say that this is proof of micro-vascular angina (even though it did not work the first time I tried it.)

    As you know, I have been doing Magnesium treatments for approx four months (nebulizer and skin oil) and had some good improvements in the beginning but after a series of unrelated relapses, the treatments were never as effective again. And they never gave me the level of relief that they brought you.

    I wish I could be as confident about this as you and I am in no way saying that you are wrong (more that my brain still does not know how to fully rule out the other possibilities.)

    Thank you and it is a relief to think that this can hopefully work again even if I don't know exactly how or why it did. I do understand your point that if it was regular angina, it should have worked the first time and it didn't. But I know it is not regular angina (no blockages on cat scan) and with micro-vascular, it seems more tied in with autonomic issues or possibly even mast cell issues? I am so unclear.

    What do you mean exactly re: the neuro effects of nitrates? Is there a page in the Goldstein book that I can read on this to try to understand it better? I always feel so dumb asking these basic questions.

    Thank you and although I am still worried, if I can find something that gives me consistent relief and increases my quality of life (even it is just means I can walk to the table and eat dinner with my family and be breathing normally) then I will be thrilled!
     
  7. parvofighter

    parvofighter Senior Member

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    Hi Gingergirl, was just popping in and saw your post. I sent you some files on microvascular angina and viral cardiomyopathy back in Nov 2014; these might be helpful, especially the ones on the Women's Ischemia Syndrome Evaluation, which studies women with clear coronary arteries, yet chest pains - and who go on to develop MACE, or "Major Adverse Cardiac Events". We share the same ME/CFS specialist, and if you need further info, you have my permission to ask him to contact me for more info. As others have pointed out, it is not possible to determine from your clinical history whether you have microvascular angina/"Atypical Angina"; however this should not be ruled out given your symptoms which sound ominously like cardiac ischemia. Importantly, many patients with microvascular angina will have normal echo, as did I.

    A few things to keep in mind:

    • Endothelial function is under autonomic control, so your autonomic signs and microvascular signs are not incompatible with each other
    • There is disagreement between most North American cardiologists and their EU peers on the role of viruses in viral cardiomyopathy or in atypical angina (atypical angina = angina with normal or only slightly obstructed coronary arteries). The HHV-6 Foundation is a credible source of the latest info on viral cardiomyopathy. Kristin Loomis could provide you with some guidance.
    • The gold standard for diagnosis of viral cardiomyopathy is an endomyocardial biopsy (EMB), which not only looks for viruses (PCR), but also immunohistochemistry for inflammation, etc. Most American cardiologists will not "look under the hood" for viruses, and IMHO their assertions that viruses play no role in atypical angina is spurious. One of the more progressive U.S. cardiologists is Dr Jeffrey Towbin. I sent you some info from his old lab, where they discuss finding viruses on EMB, and treating patients with same. He could point you towards help.
    • I received both EMB diagnosis of viral cardiomyopathy, and IVIg treatment in Germany in 2008, which eliminated ALL of my cardiac symptoms, as well as (spectacularly), the M.E. signs and symptoms. Unfortunately this remission lasted for only a few months - but it was spectacular. Previously, I had had only slight increased fluid on my echo, and Canadian testing for viruses was negative, indeed I was not given a cardiac follow-up after presenting to emerg. However, I had such a classic exposure to - and presentation of - Parvovirus B19 that I trusted my clinical findings - and how dire my heart issues were (crushing chest pain, BP 180+, etc); and luckily made it to Germany, where the diagnosis of viral cardiomyopathy and endothelial dysfunction was confirmed. They didn't only find active viruses on PCR - they also found inflammation, and auto-antibodies to endocardium and endothelium.
    • Certain viruses have tropism (target) for the endothelium, including PVB19, the #1 virus found on EMB. The Germans aim to eliminate the virus from the heart - if they don't, they report relapse, fibrosis, and progressive cardiomyopathy. In other words, this doesn't go away on its' own.
    • The University of Dundee has linked M.E. with endothelial dysfunction in their, "Large and Small Artery Endothelial Dysfunction in Chronic Fatigue Syndrome" article. Worth a read.
    • Drs Mella and Fluge of Rituximab-in-M.E.-in-Norway-fame, have given very loud signals that they believe endothelial dysfunction to be a core factor of M.E. They hint that they will be publishing on this - can't happen soon enough - perhaps they will provide guidance if you email them?
    • Routine testing such as echo will not typically pick up atypical angina; I have attached a copy of the "Proposed Scheme for Investigation" for Atypical angina.
    • The NIH has sponsored MANY studies on atypical angina as part of their W.I.S.E. studies, or "Women's Ischemia Syndrome Evaluation". The head of this initiative is Dr Noel Bairey Merz - I'd urge you to connect with her. Atypical angina is NOT benign, and is associated with significant cardiac morbidity.
    • Many endothelial tests are non-invasive, however the ultimate test is the intracoronary acetylcholine test (aka "Coronary Vascular Function Study", and if I were you, I'd be pushing for this.
    • And of course - you need a good differential diagnosis to rule out other potential causes of your ischemic signs. As part of this, you need to see someone competent and up-to-date with Atypical Angina and Endothelial Dysfunction.
    Importantly: IF you have atypical angina, your risk of cardiac events is increased by 10x. On the flip side, if you receive appropriate treatment (nitrates is part of that), restoration of endothelial function is associated with improved cardiac outcomes, specifically a 7.3 fold reduction in Ischemic Heart Disease events compared to untreated patients (W.I.S.E. research)

    Bottom line, Kristin Loomis @ the HHV-6 Foundation; Dr Jeffrey Towbin (I believe at Cincinnnati Children's); and Dr Noel Bairey Merz - all of these would be good places to start. I think I provide their emails in the attached files. You need to get to the bottom of this - atypical angina used to be considered benign, but the dozens of studies from the W.I.S.E. research show it's not.

    Best of luck, Ginger, I hope this helps .... Bottom line, the fact nitro works should be a cause for celebration, and concern IMHO
     

    Attached Files:

  8. Gingergrrl

    Gingergrrl Senior Member

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    @parvofighter

    Thank you and you post last night was too late for me to respond. I did get the stuff you sent me in Nov (and responded at that time) but it was right before I leaving to see my ME specialist. I know you said I could mention you but I do not know your name or what I was supposed to say! He has tested me twice for all forms of Parvo (six months apart) and I am completely negative on PCR and IgM (and only positive on IgG which he felt was a past infection.)

    I totally agree with you and do not rule out micro-vascular angina and do not feel it is possible to rule it in or out at this point (and both my ME and cardio agree on this point.) That is why they have wanted me to try the Nitro more times to see if it helps and felt this could be diagnostic. So I am very glad that I tried it a second time (b/c the first time that I tried it, it did not help whatsoever!)

    I apologize that I do not understand what this means? Do you mean that micro-vascular spasms are autonomic and therefore could be due to my low BP and low blood volume (i.e. not enough blood to profuse the heart when I stand up?) If this is what you mean, this has been my feeling of what might be going on b/c I have never had an episode lying or sitting and they are exclusively when I am standing or doing any kind of exertion.
    I really do not know what cardios in Europe do but will take your word for it. I have now seen three cardios in the US (my current being the best of the three but is still limited in his knowledge and had no prior familiarity with ME/CFS before meeting me.) He hospitalized me for tests and is adamant that I do not have an infection in my heart so this is a dead end with him. I am negative for HHV-6 (except for IgG) and not sure what I would be asking the HHV-6 foundation?
    I am sure you are right but they do not do this biopsy in the US (I inquired about it) and it is not realistic (health, family, and financially) that I fly to Germany. I am barely able to walk across my home right now! I told my ME doctor that I would much rather just assume I have a virus in my heart and then discuss what the treatments might be. I didn't understand from all your messages what the treatments are and can someone do them without access to the biopsy. I am not able to do anesthesia (or even IV saline) so a major surgery is out for me. Also, my cardio is not going to run these tests!
    I think our scenarios are different here in the sense that I have no increased fluid on my echo and I have been thoroughly tested for viruses at OMI. I do have several positives (EBV, VZV and more recently learned I have two positives for Echo & Coxscakie virus) but my cardio back in Sept admitted me to hospital via the ER (but you are correct that I did not have any invasive cardiac tests but did have the cat scan and lung scan.)

    Do you know why your remission only lasted for a few months if you treated the virus with IVIG? Did all of your cardiac symptoms return or are you now free from them? I know IVIG is the treatment of choice for a positive Parvo PCR (my ME doctor told me this, too) but I am negative on Parvo and negative on all PCR testing, even for EBV (but positive on all the other EBV tests.)

    This is where I get confused by your messages since I am negative for Parvo (with valid testing from OMI.) If I am understanding your quote, your BP was 180+ whereas my BP is always on the low side and averages around 90/60. My cardio said even if an invasive biopsy was done, they could take a piece of the heart that did not contain the virus and miss it. I guess the bottom line is, my cardio is not going to do this test for me and does not feel it is necessary and he has spoken with my ME doctor twice on the phone.
    How do they eliminate viruses from the heart (assuming it can be done for others besides Parvo.) I read everything you sent me but never understood what the treatment was. Is it only with IVIG or are there anti-virals or medications? I would love to understand what your actual treatment was if you are willing to share it and if the treatment has continued to work to this day and made a difference.
    Where is Univ of Dundee? Please excuse my ignorance and I am not familiar with it!
    I have no idea how to e-mail them or what I would be asking!
    I fully agree with you here and both of my doctors said that there is no definitive test for micro-vascular angina (or Syndrome X.) The echo measured other stuff and I was told with all echos that I do not have diastolic dysfunction, ventricular stiffness, normal ejection fraction, normal valves and functioning, etc, so it is confusing.
    I can google her and see where she is located and I would love to find a cardio who is in my area or willing to do a Skype consult. Thank you for the info and is sounds like she is the most familiar with womens issues? Does she still see patients?
    I have not heard of this test and will google it. Is this one done in the US or only in Europe?
    What else would this involve? I have had a lot of testing and not sure what else to ask for!

    I am already fairly certain that the ME/CFS and autonomic/cardiac stuff will kill me some day so we are in agreement here. I am dedicated to finding an answer if there is one to find. When you say "nitrates" is part of the treatment for microvascular angina, do you mean the sublingual Nitro like I tried yesterday or something else? I also take a beta blocker (which looked like it was one of the treatments from your chart.) I am still confused what else is advised for treatment? I took Famvir for eight months which did not help my symptoms and am now taking Valcyte.

    I will check for their e-mails in your files but am not quite sure what I would say (or how I would explain how I got their e-mails since I do not even know your name!) What is it that I would be asking them?

    My doctors felt the Nitro would be diagnostic so I will see how they interpret it. So far I have taken it twice and it worked only the second time which is why I posted b/c I do not know how to interpret this myself!

    I appreciate all your info and if I seem scattered and confused in my responses, it is b/c I am totally overwhelmed at the moment by people sending me things (but I do not want to miss something important.)
     
    Last edited: Mar 29, 2015
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  9. Sidereal

    Sidereal Senior Member

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    Which coxsackie virus was found?
     
  10. Gingergrrl

    Gingergrrl Senior Member

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    Coxsackie B virus, type 4 and Echovirus 11 (but on the second test the Echovirus went down to almost the normal level whereas the Coxsackie went up to 1:160.) Still not sure what this means!
     
  11. Sushi

    Sushi Senior Member Albuquerque

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    He is also a Ph.D. researcher and has published. I am pretty sure he is still in practice and he is said to be a very nice man. I think the best approach (as he is in very high demand) would be to have Dr. K or your cardio contact him and talk to him. Doctors are usually much more willing to be in contact with other doctors than with unknown patients. This is especially true if both have research interests in the same area. My dystautonomia specialist was in contact with Dr. Julian Stewart.

    His work is discussed a lot as there are many patients who seem to have too much NO (and thus react badly to things like nitroglycerine) and yet another group who respond very well to NO. It is just one of those mysteries yet to be unravelled.

    Sushi
     
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  12. Gingergrrl

    Gingergrrl Senior Member

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    @Sushi Thank you and I totally agree and this is something I am very interested in pursuing once I get all my thoughts together. I can imagine he must be in incredibly high demand and getting an e-mail from a random patient is not high on his list!
     
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  13. Sidereal

    Sidereal Senior Member

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    If I had this test result, and this is just my personal opinion, I would conclude I had a chronic non-lytic enteroviral infection in the heart, and probably other tissues like hypothalamus, muscles, gut etc. producing dysautonomia and other classic ME symptoms.

    I wouldn't bother with heart biopsies or any other risky diagnostic procedures since this situation is not likely to show classic signs of myocarditis and you are likely to be told everything is "normal" when you can't walk across the room.

    There is a long history of ME literature (especially in the UK but more recently John Chia in the US) linking ME to enteroviruses. You can read tons about it here on PR in posts by knowledgeable people like @Hip and @halcyon.

    There are some treatments available but they're not great. I'm sure your doctor is familiar with Chia's oxymatrine etc.
     
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  14. Gingergrrl

    Gingergrrl Senior Member

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    @Sidereal I actually agree with you on everything you said except I forgot what "non-lytic" means? I don't plan to get a heart biopsy b/c it is not even done in the U.S. and it is too risky for me and not sure I would even survive the procedure with the number of rare disasters that happen to me. I see my cardio next week and will see what he says. If Nitro can help my symptoms then I am open to taking it again as needed.

    I am very familiar with Dr. Chia and he is only about 45 min from where I live. My doctor did not think I needed to see him b/c his treatment is Equilibriant which I cannot take b/c of Hashimoto's and it has ingredients that I don't tolerate and an orange food dye! I have spoken in detail with @halcyon about this (and a little bit with @Hip) and am always open to feedback from everyone.

    The amount that I have learned on my nine months on PR has been incredible and I feel like I am still in the middle of the journey. Prior to PR, I was not sure what was wrong with me and had no ME specialist or testing or tried anti-virals and no clue about the histamine/mast cell stuff or dysautonomia, the Magnesium nebulizer & oil, or Dr. Myhill & Dr. Goldstein's theories, etc. I keep asking so I can keep learning even though it is overwhelming at times. And hoping my openness will help others down the line.

    Thank you so much for all your expertise and guidance (Sidereal and everyone!)
     
  15. Sidereal

    Sidereal Senior Member

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    @zzz will know much more about this than me but I was under the impression that Goldstein used nitro on his patients for ME/CFS in general not just when they were having an attack of angina.
     
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  16. halcyon

    halcyon Senior Member

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    He definitely uses things other than Equilibrant so I'm not sure that's a fair assessment. I bet he has many patients with Hashi's that he still tries to treat. Your new sensitivities really add some complexities to trying treatments though don't they.
     
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  17. Sidereal

    Sidereal Senior Member

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    Also, one can try Sophora flavescens separately and avoid the intolerable stuff in Equilibrant.
     
  18. halcyon

    halcyon Senior Member

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    Possibly, I'm not sure exactly which ingredients are contraindicated for those with autoimmune disease. Oxymatrine will cause interferon release, so that may be bad.
     
  19. alex3619

    alex3619 Senior Member

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    I have a script for nitro right now, and I am hoping if I am well enough I might go with my shopper today and pick it up from the pharmacist. If so I will be testing it soon. I do wonder what percentage of us respond to this kind of therapy.
     
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  20. Gingergrrl

    Gingergrrl Senior Member

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    @halcyon you are totally correct and I did not mean to imply that he only prescribes Equilibriant and nothing else. My doctor didn't think it was the right direction for me to go at this time but absolutely did not say anything negative about him. I do not rule out seeing him in the future and have great respect for him (AND for you.) But you already know that!
     
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