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Discussion in 'Cardiovascular and Respiratory' started by Sunshine3, Jul 31, 2018.

  1. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

    Not anxiety related. They come after any exertion and random bouts at night that wake me. They have gotten worse recently. Has anyone any experience of these and any luck treating them. Thanks...I also have severe OI, arrythmia, erratic heart rate etc.. the whole shooting gallery...

    Had a negative tilt test last year
  2. Amw66

    Amw66 Senior Member (Voting Rights)

    My aunt experienced these. So bad that she had an ambulance ride twice and monitoring - NHS could not find a reason for " normal" function when she had experienced these.

    As there is a history of heart problems in our family, she had a private consult, was given an app to download which monitored function over a 2 week period , which showed that her heart was fine.

    Though her overall condition has not improved, the palpitations are less frequent since she has been injecting magnesium, and dealing with hormone issues.
    She also has OI.

    I don' t know whether the palpitations were linked to adrenaline spikes after exertion, potentially low blood sugar during night- time - or effects if REM sleep.
    I suspect that as her oxidative phosphorylation system is crap that she can' t replenish ATP from ADP fast enough after exertion- the magnesium injections may help boost this.
    alktipping and Sunshine3 like this.
  3. Daisybell

    Daisybell Moderator Staff Member

    New Zealand
    I get them very occasionally - I can feel it coming on so usually I can sit down quietly and it only lasts a few minutes. My heart rate doubles to around 160bpm, and to look at me, you can actually see my body shaking. For me, it’s a sign I’ve overdone things. So my only advice is to try to cut back on overall activity...
    Have you had a 24 hour holter monitor? That might help to show up what is actually going on for you...
    alktipping, ahimsa, Sunshine3 and 3 others like this.
  4. James Morris-Lent

    James Morris-Lent Senior Member (Voting Rights)

    United States
    I'm sorry you're getting these. Palpitations were one of the harbingers for me. I would get a lot of PSVT episodes and lots of disconcerting skipped beats. When I was really sick PEM for me would feel like my heart would revert to a rhythm where it could only do 55 bpm and was trying to push tar instead of blood.

    I hope you've had this professionally evaluated. I got an echocardiogram and nuclear stress test about 5.5 years ago and it was reassuring to know that my heart wasn't broken (although obviously frustrating not to have answers).

    The one thing that comes to mind to try would be a sustained-release magnesium. Could help a bit.
    alktipping and Sunshine3 like this.
  5. Ryan31337

    Ryan31337 Senior Member (Voting Rights)

    Have to ask, negative for what?

    Traditionally a negative TTT would mean you hadn't fainted and probably didn't have Vasovagal Syncope. But fainting is not a requirement for POTS, for example, so unless the people doing the TTT knew to look for more than syncope you may well have had another identifiable OI condition but still have a 'negative' test.
    alktipping, ahimsa and Sunshine3 like this.
  6. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

    Low iron and/or ferritin? Low or high cortisol?
    Mij and alktipping like this.
  7. NelliePledge

    NelliePledge Moderator Staff Member

    UK West Midlands
    i get them sometimes too evenings are when I notice them and I think it is more often when I have overexerted. I also have history of cardiac issues in my family I get discomfort and occasional pain left upper arm too which I thought could be angina. I plucked up the courage to ask GP about it and she did take it seriously due to family history but Ive had ECG at the surgery and they say nothing came up on it
    alktipping likes this.
  8. Ravn

    Ravn Senior Member (Voting Rights)

    Just to be sure it's not some serious or easily treated cardiac issue you may want to get this checked out by a doctor. While you're there you could ask about some of the medications used in POTS like beta-blockers or florinef. Some people find them good for reducing palpitations.

    I get the night palpitations, too, and like for others here they're worse when in PEM.

    Here are some try-at-home tricks I've come across on the Internet and tried with varying success:
    1. Different type snacks at bedtime, based on the hypoglycemia theory. Didn't work for me, not carbs, not protein, not fat, not combinations. All I got out of it was gut discomfort to add to the palpitations.
    2. Wait it out trying to relax and meditate. This works for the mild palpitations I get at base line but not for my PEM palpitations. I suspect the relaxation bit doesn't actually do anything for the palpitations, it just makes me feel a bit better while waiting for the palpitations to go away by themselves.
    3. Get up, go to the bathroom even if I don't need to go, and go back to bed. Annoying because who wants to do extra steps in PEM but sometimes this seems to 'reset' my heart (it takes a few minutes). Works about 50% of the time for me.
    4. Guzzle at least 250ml of cold water as fast as possible (I keep a thermos flask by the bed). This, too, sometimes 'shocks' my heart back to normal (also takes a few minutes). Also works about 50% of the time for me.
    5. Best is doing 3&4 together, i.e. go to the bathroom and then down some water just before lying down again. Sometimes I have to repeat the process but it almost always works in the end. This works about 80% of the time for me.
    I think (but haven't checked) the cold water trick is mentioned in this video. Even if my memory deceives me on the water bit, the video is entertaining and informative if you have OI (which can cause palpitations) :
    alktipping and Sunshine3 like this.
  9. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

    Heart palpitations (tachycardia/missing beats/fluttering beat) are one of my core symptoms and have been from when I first got ill. I take potassium chloride tablets twice in the day and one just before bedtime. (Total dose is well within my recommended daily amount)

    This seems to have knocked the frequency down a lot and I now seem to get much lighter symptoms in terms of intensity and duration.

    I’ve noticed on my symptom tracker that if I do get heart palpitations it’s very often a harbinger of a PEM episode (normally 24-48 hrs before it hits).

    I got my heart checked out at hospital after a very scary ambulance to hospital event where my arm and neck went suddenly numb followed by chest pain/heavy chest and I felt I couldn’t breathe. This was before I got sick and was whilst I was sat down quietly working at my pc. The paramedics picked up the tachycardia and irregular heartbeat then but since it went away and my heart resumed to being normal during my 3 hr observation in hospital, nothing more was advised. I did the 24 hr monitoring thing with the battery Walkman thing but this didn’t pick up anything either.

    I would advise going to a doctor to get things checked out before taking any supplement though since heart disease is quite common and it’s best to be safe than sorry.
    James Morris-Lent and alktipping like this.
  10. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

    I found these sort of diminished after upping my magnesium. I was having two Epsom salt baths a day at one point. However, I kept getting cramps until I increased my potassium too.

    Now I just drink electrolytes and oral rehydration solution throughout the day which seems to minimise most of it. It's possible, too, that it was all OI related, perhaps due to low blood flow, and that by increasing my blood volume it's helped. That's a common explanation I've seen.

    Dr Worthley at the ME Trust recommended Banana Bags ORS as a popular OI treatment, but they're quite expensive. I found an alternative online that was much cheaper. He also said I should do lower leg stretches when laid up to lessen OI. I just point my toes and rotate my feet regularly.

    Obviously, this is only for me, so I can't say what will work for you. It could be adrenal, thyroid-related, or something else.

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