The 12th Invest in ME Research Conference June, 2017, Part 2
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PEM Chest Pain when sleeping

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by summersun, May 28, 2015.

  1. summersun


    Hi. I'm new here so hello everyone. I searched the internet last night looking for an answer and couldn't find anything so I thought I would try here.

    This only ever happens a few hours or a day after doing too much. When I fall asleep I am woken by a sensation that feels like my heart feels heave/being squeezed. It's painful enough to wake me up but goes in under a minute of being awake.

    I have had severe ME/CFS since 2012, I also have a diagnosis of POTS and have seen a cardiologist who says apart from the tachycardia everything is fine. Personally I think it's when my heart slows down when I'm asleep not enough oxygen is getting around and causes chest pain?

    Is this something anyone else gets or has any advice?

    Many thanks :)
  2. Denise

    Denise Senior Member

    Have effects of meds/supplements and interactions of meds/supplements been carefully looked at?
    (Do you mind sharing what meds/supplements and doses you are currently taking?)
  3. summersun


    Hi Denise. I'm overly sensitive to everything and can't take any meds/supplements at the moment. So the answer is none.
  4. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

    Recently I had a similar thing happen to me. About five minutes after I had laid down flat on my bed to go to sleep, I had the sensation of squeezing and pressure in my chest. It wasn't like anything I'd experienced before, so I called a consulting nurse service and they urged me to be seen right away, even though it was midnight. I had blood tests, EKG, chest xray, etc. and everything looked fine, so they sent me home.

    On my own, I read that there is a type of angina that occurs when one lies down, and it is called angina decubitus. Here's an article about it:

  5. Alea Ishikawa

    Alea Ishikawa

    @summersun - Although I do not know enough about your condition to really know what's going on, I do know that angina is a known symptom in ME/CFS and according to Dr. Myhill stems from mitochondrial issues in the heart. I experience this sometimes when doing too much, mentally or physically. This seems to occur while waking; no idea about while sleeping.

    I have found L-carnitine fumarate reduced the heart pain. I use the Doctor's Best brand at significantly lower doses, maybe 1/4 of a capsule or less, typically.

    Would you happen to have been diagnosed with POTS? @Gingergrrl and @ahimsa have experienced high bpm while sleeping (thread here). @caledonia takes magnesium for RLS. Others talked about sleep apnea and dehydration. I'm also wondering if position would make a difference for you; I sometimes get heart pain laying on my left side.
  6. caledonia


    Cincinnati, OH, USA
    I can wake up from sleeping with my heart racing and pounding. I may have either reflux or a central sleep apnea (or maybe both sometimes). Heart pain or feeling a lack of oxygen can go along with that sometimes.

    For temporary relief try long slow deep breaths for several minutes to get more oxygen in.

    Methylation supplements (especially B12 I think) have been helpful. Unfortunately, I had a long period of stress and things have regressed - I'm trying to dig back out again.

    Stress depletes B vitamins and can also create the conditions for reflux. I'm also on an SSRI which I found out can cause reflux - never had issues with that until I was on an SSRI for several years. My SSRI also depletes B vitamins.

    I'm currently on an H2 blocker for reflux. That can deplete B12 and magnesium.

    I've tried carnitine but haven't noticed if it helped heart pain or not.

    The RLS is a separate issue, and the mag does work well for me for that. Electrolyte wasting is due to adrenal fatigue, as the adrenals control electrolyte levels. As my adrenals improve then I need less mag for the foot twitching.
  7. ahimsa

    ahimsa Rarely on PR now

    Hi, welcome to the forums! Sorry that you're having these pains.

    I'm not sure I can help you at all. But since I was mentioned in the thread I thought I'd at least share my symptoms. It's worth a shot, right?

    I've had chest pains as part of my symptoms ever since either the first or second year (not sure which). I'm pretty sure my chest pain is due to the orthostatic intolerance part of my illness but I don't know for sure. I've been sick since 1990.

    My chest pains seem a bit different from yours, though. Like yours, my chest pains are associated with doing too much (generally delayed, part of the PEM symptoms, not during or right after the over exertion). But for me these chest pains don't usually happen while I'm sleeping. Or if they do, the pain is not bad enough to wake me up.

    I don't know why these chest pains happen in patients who have POTS and/or NMH but here's one theory
    ( from )
    I have never found any prevention or treatment for chest pains other than the general treatments for Orthostatic Intolerance(OI) -- various prescription drugs, extra salt and potassium, more fluids/electrolytes, avoiding heat, etc. Plus doing less and resting more.

    Here's one web site with a list of treatment options/lifestyle changes for OI -

    Treating the OI does not fix the root cause but I have never found a doctor who has been able to even propose what that underlying cause might be. In fact, I've had doctors ask me, "What is NMH/POTS/OI?"

    Some patients on this forum have tried to find and treat the root cause (e.g., using anti-virals to treat infections sometimes helps reduce the OI). There are several ME/CFS specialists out there with different theories and treatment approaches but I know nothing about that.

    The only other thought I had was that my chest pains from OI are usually sharp pains, or sometimes a burning feeling, but usually not pressure or squeezing. So that sounds different from your chest pains.

    When I did have chest pain that felt like pressure/squeezing (back in 2007? I think?) it turned out to be a gall bladder problem. Ultrasound confirmed it and surgery fixed it. But those pains lasted a lot longer than what you are describing, were more central (under the breastbone), etc. Still, I thought I'd mention it just in case.
    Last edited: May 30, 2015

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