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Heart issues

Discussion in 'General ME/CFS Discussion' started by jerrymcfadyen, Nov 25, 2014.

  1. jerrymcfadyen

    jerrymcfadyen Senior Member

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    I've been to three different cardiologists and had cardiac stress test, echo cardiogram and CT scan. Nothing was found abnormal in any test. I'm still having chest pain. My heart hurts lying still and after exertion, could there still be a heart problem or is this just part of my ME and Fibromyalgia pain?

    I'm also having a lot of issues with POTS/OI. When I stand and walk a few steps I get light headed, my legs go limp and I go down. Is this associated with a heart condition and/or is there any treatment for it? I am currently taking Mestinon 30mg three times a day for the POTS but it's not helping at all.

    Thanks in advance for your help
    Jerry MC
     
  2. Sushi

    Sushi Senior Member Albuquerque

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    Sadly, none of us can answer that very good question. We can share our experiences, though, for what that is worth.

    For me, what felt like and seemed like cardiac issues were some of the first symptoms I had. It was very scary and I also had lots and lots of different types of cardiac tests. I was found to have dysautonomia but later tests also found different pathogens.

    All I can say is that my cardiac-like symptoms are much better through treating ME. I hope that you also find relief. Cardiac symptoms are some of the worst.

    Best,
    Sushi
     
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  3. AndyPandy

    AndyPandy Making the most of it

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    Hi there @jerrymcfadyen

    I am tagging @Gingergrrl for you as she might have some helpful comments about your situation.

    Best wishes Andy
     
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  4. Martial

    Martial Senior Member

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    chostochondritis, eosphogus spasms, and some kinds of Gerd can trigger similar symptoms. Of course no one here can really diagnosis stuff like this. Just things worth looking into.
     
  5. Gingergrrl

    Gingergrrl Senior Member

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    Hi Jerry,

    I have also seen three cardiologists over the last few years and currently seeing one who is knowledgeable with dysautonomia and who took my issues very seriously and hospitalized me for tests back in Sept. I had the CT angiogram which showed my coronary arteries are normal with no blockages and an echocardiogram (both laying flat and standing which was normal.) I very much wanted to figure out if I had a separate cardiac issue (in addition to ME/CFS and dysautonomia which I knew I had.)

    I had an ischemic response on the ekg portion of the treadmill test (with my former cardio) but as far as I know this was a "false positive" once the CTA was negative (or it may have been due to low blood volume.) My new cardio is also undecided if I have "Microvascular angina" but at this point, it seems unlikely.

    In my case, all my horrible cardiac symptoms appear to be due to ME/CFS itself and to dysautonomia. I am currently taking Atenolol to control inappropriate sinus tachycardia & POTS type symptoms, Midodrine b/c my BP is very low all the time, prescription Potassium (plus some unrelated stuff like thyroid med and Famvir.) I also try to drink as much water and electrolytes as I can like Pedialyte and Vitalyte to try to increase my blood volume.

    Someone recently mentioned Mestinon to me but I have never taken it and have not had a chance to research it yet. My cardio is wanting me to switch from Midodrine to Droxidopa but for now I am going to stick with Midodrine. Have you had a Tilt Table Test and does your BP go really low?

    Another option for many is IV saline (for low blood volume) but this was disastrous for me and sent me to the ER and not a treatment that I am able to do.

    Since changing around my Atenolol dose and increasing my Pedialyte, I have not had any tachycardia or angina type symptoms. However, my BP still remains pretty low and I still have shortness of breath if I do too much (which for me is still practically nothing!)

    ETA- I also wanted to add that I had several Zio Patch studies done (like an extended holter monitor study) which ruled out any kind of arrythmia in case you have not done that.

    Best wishes and I am sorry you are dealing with all this.
     
    Last edited: Nov 26, 2014
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  6. SDSue

    SDSue Southeast

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    So sorry you are struggling Jerry. The cardio symptoms are very scary - @Sushi coined the term "cardiac weirdness" which says it all. My cardiac issues and my POTS have been greatly decreased after several months of Low Dose Naltrexone.

    If I'm not mistaken, Mestinon is used mostly for orthostatic hypotension, whereas there are other drugs that are usually prescribed for POTS. Many with POTS have had success with Florinef and/or Midodrine combined with electrolyte and fluid loading. I hope you find your sweet spot with meds soon! Please keep us posted.
     
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  7. Gingergrrl

    Gingergrrl Senior Member

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    Thanks for explaining that @SDSue and I feel like my answer was too disjointed! Florinef was horrible for me but does work for many people. And I have always liked Sushi's term of "cardiac weirdness."
     
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  8. SDSue

    SDSue Southeast

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    @Gingergrrl You weren't disjointed. You just have a lot more going on in the cardio arena - which makes your answer valuable. :thumbsup:
     
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  9. halcyon

    halcyon Senior Member

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    Sounds like vasovagal syncope which I believe goes along with POTS/OI.
     
  10. xchocoholic

    xchocoholic Senior Member

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    Are you fainting or are your legs going out on you ? My legs used to go out on me but that was from gluten damage. I have oi / pots and don't faint.

    Chest pain can be non heart related. Have you had a cat scan ? That might help. But may not be necessary if your pain is digestive and can be treated via diet.
     
    Last edited: Nov 26, 2014
  11. jerrymcfadyen

    jerrymcfadyen Senior Member

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    Thanks everybody, you've given me what I needed which is info to talk over with my doctors.

    @Gingergrrl I have not had a tilt table test. The Cardiologist who was going to do it said there was no need he could already tell from taking my BP/Pulse lying then standing that I have POTS. When I stand my BP goes way down and my pulse goes way up. He prescribed nothing and sent me on my way. It was my Neuro. that gave me the Mestinon. I do drink a ton of water everyday but may try adding Pedialyte.
     
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  12. SDSue

    SDSue Southeast

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    Sounds like you're on the right track in getting help. I had full-blown POTS on my TTT, and the cardiologist called it "anxiety", laughed with the tech about how I need to drink more wine, and dismissed me. It took my nephrologist to finally treat me. You never know what specialty might know about dysautonomia.

    My nephrologist recommended Nuun Active Hydration Tablets. They aren't cheap but they do the job. I use those and
    SaltStick capsules. I may start to mix my own now that I'm feeling a bit better on the LDN, but needed easy when I was bed bound.

    Wow, xchocoholic, you may be on to something. Early in this disease, my legs became so weak I would fall and could no longer climb steps. I cut out gluten and slowly over many months my legs got better.

    Until this morning - with all the Thanksgiving food around, I gave in and had gluten yesterday. This morning my legs are weaker than they've been in a long time (along with headache, GI trouble :oops:, worse brain fog). Coincidence or could it be the gluten that fast?
     
  13. xchocoholic

    xchocoholic Senior Member

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    I feel the effects quickly too. I start swaying when I'm walking. Trying to walk on a sidewalk is the best way for me to tell that something's not right. I keep falling off of them ... lol ... tc .. x
     
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  14. Gingergrrl

    Gingergrrl Senior Member

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    @jerrymcfadyen when your neuro gave you Mestinon, did he say what symptoms it was targeting? Was it to reduce tachycardia or increase BP? I forgot, do you have low BP that you are trying to raise? My TTT was useless but they can be helpful.

    ETA: just re-read your post where you said Mestinon not helping you at all and would love to hear more about this when you have time.
     
  15. xchocoholic

    xchocoholic Senior Member

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    hi again. Just to be clear, I learned everything about gluten from people posting their experiences and providing excellent research links on the internet back in 2005.

    If you google theglutenfile you'll find what I found.

    I'm just a dummy who caught a break (if you can call getting full blown celiac disease a break) because my body's ability to digest gluten finally stopped when I was 50 years old. I have the dq2 gene so this should've been caught much sooner.

    Tc ... x
     
  16. SDSue

    SDSue Southeast

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    Thanks. I will look at the link. I just learned yesterday that I, too, have the dq2 gene (homozygous), and it took me until around age 50 to start having trouble too. Wish I'd have learned sooner.

    @jerrymcfadyen - with your weak legs, it might be worth a look at your 23 and me results? I tested negative for celiac but have the gene and definitely do better without gluten, so apparently I'm in the 20% of false negatives on typical celiac blood work.
     
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  17. jerrymcfadyen

    jerrymcfadyen Senior Member

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    @Gingergrrl The Mestinon was supposed to help with the tachycardia but it's not helping at all. I have slightly high BP most of the time but when I stand it drops and my heart rate goes up to 140's. When this happens I get light headed and my legs go weak and feel like jello my whole body starts jerking with seizure like movements. I fall sometimes fast sometimes slowly but never pass out completely. The worst two falls were once on the drug store I went down and took out a shelf full of merchandise with me (VERY embarrassing) the other I fell outside at home and broke two ribs (VERY painful).
     
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  18. jimells

    jimells Senior Member

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    My "prescription" is for a new doctor!

    I drink my own version of "sea water": 1 quart water, 1/2 teaspoon salt, 1/2 teaspoon "No Salt" (potassium chloride), a little lemon juice. I also take Florinef. I still have POTS symptoms when I do too much and crash, but mostly it's under control.
     
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  19. Gingergrrl

    Gingergrrl Senior Member

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    @jerrymcfadyen I am so sorry you are going through all this and have actually fallen twice AND broken ribs and your doctor is not taking this seriously. Have you tried a beta blocker for the tachycardia? I hope I didn't just ask you this a few days ago and forgot! For me, the beta blocker completely controls my tachy and I have no POTS episodes when I stand.

    I have arm weakness vs. leg weakness to the point that I am now telling the pharmacy that I need regular bottles (not childproof ones) b/c I literally cannot open them. My main other issue is consistently low BP and shortness of breath with the slightest activity but I have never fallen or fainted.

    It sounds like the Mestinon is not working for you (for controlling the tachy or regulating BP) but yours is tricky b/c it alternates from high to low and mine is just always low.

    Keep me posted what you find out or decide to do.
     
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  20. jerrymcfadyen

    jerrymcfadyen Senior Member

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    I had to reschedule my November Neuro. appointment because my wife was having a heart cath. on that day. ( that's another crazy doctor story) Anyway the first available appointment is first of January. I'm writing all this info down to talk over with him. I have not tried a bata blocker to date.

    Thanks for all the input.
    Jerry Mc
     
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