1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
Discuss the article on the Forums.

strange heart symptoms

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by jimmy86, Oct 27, 2013.

  1. jimmy86

    jimmy86

    Messages:
    47
    Likes:
    34
    Hi everyone,

    let me tell you about a symptom I have experiences a few (maybe 3 or 4) times in the last 5 years. It almost always starts when I am sitting or lying. It begins that my heart rate goes up (>120), I start to feel extremely twitchy and nervous (not so much anxious though, more like excited but in a bad way), I have a urge to move around, and I don't realize what is going on around me anymore.

    Also my hands get red, and I get flushes in my hands and feet, I start to feel weak and tremble. Finally, I have some sensations in my left elbow (which I have from time to time without the other symptoms) and at some point I feel like fainting.

    I do NOT, however, have any kind of pressure on my chest (what you would expect for heart attack...) When it happened I just got up, walked around, drank some water and it got better slowly.

    Does anyone know what could cause this? Do you think it is a heart disease thing, something related to blood sugar, thyroid or anything else??? I think what triggers it is stress and not enough exercise (the little I can do...), that is sitting too much...

    I'd be very grateful for any suggestions (should I see a doctor??), I am bit worried...
    Thanks,
    Jimmy
     
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    7,280
    Likes:
    6,343
    Albuquerque
    Hi Jimmy,

    Do you have a diagnosis of ME/CFS? I ask because, if you do, this could be a problem with your autonomic nervous system. Or it could be something else! :confused:But it does sound like something to get checked out. Do you have a good GP?

    Best,
    Sushi
     
  3. jimmy86

    jimmy86

    Messages:
    47
    Likes:
    34
    Hi Sushi, yes I have a diagnose of ME/CFS. Unfortunately, I don't have a good GP.... :(.
     
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    7,280
    Likes:
    6,343
    Albuquerque
    Depending on what country you are in and what is available to you, perhaps a cardiologist who respects the role of the ANS?

    Sushi
     
    ahimsa, jimmy86 and SOC like this.
  5. jimmy86

    jimmy86

    Messages:
    47
    Likes:
    34
    I am living in the US now and I think that is a good idea. Has anyone else experienced something like this?
     
  6. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,697
    Likes:
    10,159
    Amersfoort, Netherlands
    It sounds like a couple intense Orthostatic Intolerance episodes I've had. The muscles want to move because it can help in maintaining blood flow to the brain. One way to check is to lie down immediately when you feel the first symptoms. If you feel a bit better after a while, then it might problems with blood pressure, pulse pressure, heart rate, and/or oxygen levels.
     
    jimmy86 and Bob like this.
  7. Bob

    Bob

    Messages:
    8,866
    Likes:
    12,478
    South of England
    I think many ME patients usually have these sorts of problems (e.g. orthostatic/autonomic dysfunction) when they are vertical, not when they are lying down, and I've never come across across anyone else who has had exactly the same experiences that you describe (i.e. over-stimulation, only when lying down.)

    But I have had almost identical experiences as you describe.

    And I came to the same conclusions as you did: That it was possibly a heart problem and/or related to blood sugar and/or a blood pressure problem and probably related to long-term inactivity.

    It felt a bit like a panic attack, but it definitely wasn't a panic attack.

    Like you, I only got it when I was lying down, to begin with. (But later it became more persistent.) But, unlike you, I got some mild chest pain and palpitations. My heart would race, and I would get a surge of hormones (a bit like a panic attack) that would over-stimulate me. I'd also feel short of breath. And I would feel semi-conscious, as if I was about to faint and not enough blood or oxygen were getting to my brain. It subjectively felt like heart failure.

    The problem became persistent for me, and I started to feel permanently faint (semi-conscious) when I was walking, with chest pain and palpitations. So I had my heart monitored because the problem was persistent and worrying. All my heart readings were normal, and the specialist laughed at me when I said I was worried about a heart problem. (I don't look at all unwell.)

    Any doctor will probably dismiss your experiences, like they did with me, and tell you that you were having panic attacks. (But you must get yourself tested to see if they can detect anything.)

    Like you, I also thought it might be a low blood sugar problem, especially after eating.
    Or a low blood pressure problem, after eating.
    (Apparently both are possible.)
    (I was sometimes experiencing that same problems after eating large meals.)

    For some reason I thought that my heart (e.g. heart muscles) might be out of shape because I had never raised my heartbeat since becoming ill. And I thought perhaps this might be affecting my heart function. (The only exercise I ever got was walking since getting ill.)

    So I decided to try raising my heart-rate ever so gently. My ME is very reactive and I can suffer from almighty relapses with only very minor exercise, so I had to consider this very carefully.
    What I did was to shuffle just a few meters. (It wasn't a run - it was a slow gentle shuffle - slightly faster than walking.)
    It raised my heart rate very slightly.
    I was worried that I would suffer an ME relapse, so I then rested a lot.

    A couple of days later, after no pay-back, I had another shuffle for about 20 metres - just enough to raise my heart rate very slightly.

    I continued to practise this, once every three days, as long as I wasn't experiencing any pay back.

    I haven't experienced the weird symptoms ever since my second week of shuffling exercise. So it worked for me. I now regularly try to incorporate a shuffle into my exercise routine, so that I regularly raise my heart rate. Except when I relapse, then I have total rest until relatively stable again.

    My theory is that my heart muscles were out of shape because I hadn't raised my heart rate for so long, and that this was causing a heart dysfunction of some sort.
    And I think perhaps raising my heart rate enabled my heart to normalise in function.

    Obviously it's just a theory, and I might be wildly wrong about it.

    But it may have been an orthostatic problem, and not an actual heart problem, that was fixed by the exercise. (Our bodies probably do need exercise to function properly.)

    If you try any exercise, please be excessively careful and gentle. Just increase your heart rate ever so gently, for a very short time. And give yourself enough time afterwards to make sure that you won't suffer from a relapse. Perhaps rather than a shuffle, you could consider trying a short aerobic exercise at home, such as lifting your arms in the air.

    I wouldn't have done this unless I was feeling relatively well. If I was already suffering from PEM or I was feeling relatively unwell, then I'd never have experimented with raising my heart rate. I did what I thought was probably entirely safe for me to practise at the time. But doing this sort of exercise, however brief and gentle, could make an ME patient extremely ill. So it's not something that I'd recommend to any ME patient. I'm just telling my personal experience, in case you think you could try it safely.

    Always remember to be ultra-ultra cautious if doing any more activity than you are used to. Keep it very short. Be exceptionally gentle. And rest for a long time afterwards. Don't repeat for at least two days, and possible four days, depending on how long your PEM usually takes to react.
     
    Last edited: Oct 30, 2013
    merylg and jimmy86 like this.
  8. jimmy86

    jimmy86

    Messages:
    47
    Likes:
    34
    Hi bob, first off thanks for this answer. It is very helpful in its content and also I do not feel that lonely with that condition any more. I am glad that you found a way to that gives you relief! I tend to see it now as a blood pressure problem. It especially comes up after long time of sitting (maybe all the blood is then in my legs?), for example at work. You see, I feel relatively well, too, normally, but when sitting and having stress this symptoms might get triggered. Also, definitely, by a lack of exercise, even gentle walks. I will try to do gentle walks and aerobics and see if it comes back anytime.... again thanks a lot!
     
    Bob likes this.
  9. Bob

    Bob

    Messages:
    8,866
    Likes:
    12,478
    South of England
    You're welcome, and you're never alone on this forum... We all have a range of weird and wonderful symptoms, but not always quite identical. Plenty of us have problems with blood pressure, orthostatic intolerance, and autonomic dysfunction etc, with unpredictable symptoms.

    Perhaps that's what I had. I don't know.

    Like I said earlier, I think ME patients usually have problems when they stand up, rather than when they lie down. But if we've got orthostatic problems, then I can't see any reason why our blood pressure should automatically be OK when we lie down.

    Please be ultra-careful. Start with a very short walk, if you think it's safe to try. And don't do another walk the next day.
    If you decide to increase your heart rate, do no more than 30 seconds of very mild exercise. Again, don't do any the next day.

    Gently gently gently. Safe safe safe.

    BTW, I don't think that exercise helps, treats or cures ME. Quite the opposite: exercise can be disastrous for ME. I just think that our bodies are designed to get a little exercise every day to function properly, if we are able to do so safely. I try to have a short walk once a day, if I'm well enough. I pace/rest very strictly.
     
    Last edited: Oct 31, 2013
    merylg and jimmy86 like this.
  10. jimmy86

    jimmy86

    Messages:
    47
    Likes:
    34
    I think the same. Evolutionary seen, humans have to move to stay well. However, we can't. That is not making our condition any better.
     
    merylg and Bob like this.
  11. sleepy237

    sleepy237 Senior Member

    Messages:
    246
    Likes:
    12
    Hell
    If you are feeling anxious it can not cause cfs symptoms but it can exacerbate them. I have experienced fast heart rate at rest before randomly. It might have been adrenaline related if it got better by moving, also any postural changes can have an impact on heart rate and blood pressure. All the hormones are dysregulated and if you have high load of adrenaline it can cause anxiety too. Sounds familiar to me.
     
    jimmy86 likes this.
  12. Bob

    Bob

    Messages:
    8,866
    Likes:
    12,478
    South of England
    An article on the subject by Cort Johnson.

    I'm not sure if he has any medical answers, but you might find it interesting anyway.

    HEART PALPITATIONS, HEART POUNDING AND HEART FLUTTERING – OH LORD!
    A CARDIOLOGIST ON HEART RACING AND ARRHYTHMIAS IN CHRONIC FATIGUE SYNDROME

    http://www.cortjohnson.org/blog/201...t-racing-arrythmias-chronic-fatigue-syndrome/

    "I’ve been to the doctor/emergency room twice over the past three decades checking on heart issues and now they’re back again..."

    "For myself, I notice sometimes when I lie down I can hear my heart pounding, which is a sound that is not all conducive to resting."
     
    jimmy86 and sleepy237 like this.
  13. jimmy86

    jimmy86

    Messages:
    47
    Likes:
    34
    Thanks a lot!
     
    Bob likes this.
  14. alex3619

    alex3619 Senior Member

    Messages:
    7,711
    Likes:
    12,584
    Logan, Queensland, Australia
    I had this red flushing in hands and feet in about 2000-1, I often felt like feinting, and sometimes did pass out. In addition to ME I have neurally mediated hypotension (NMH), a type of orthostatic intolerance. The other type, POTS, has tachycardia as a primary symptom.

    The red in the hands means vasodilation in the hands. When it first happened to me I had always had pasty white hands. As far back as I could recall. All of a sudden my hands looked like they had been dipped in red ink - not kind of red, almost bright glowing red. As I was a student at the time, I went looking for the leaking red pen in my backpack. :confused:

    By the time I got to a doctor, as this was freaking me out, I didn't need to be considered in the same category as the reindeer Rudolph, my hands were merely pink. Which had my doc at the time look at me like I was crazy. To this day my hands are pink not pasty white. It never went away, but I did learn how to better pace myself and cope with my NMH.
     
    jimmy86 and ahimsa like this.
  15. Bob

    Bob

    Messages:
    8,866
    Likes:
    12,478
    South of England
    BTW, all the symptoms that we've discussed can be explained by autonomic dysfunction (aka dysautonomia).
    Autonomic dysfunction is a malfunction of the autonomic nervous system.
    The autonomic nervous system is a complex system, controlling many aspects of our bodies.

    A short explanation can be found on wikipedia (see 'signs and symptoms' for all the issues that we've been discussing):
    http://en.wikipedia.org/wiki/Dysautonomia
     
    Last edited: Nov 13, 2013
    jimmy86 likes this.
  16. PNR2008

    PNR2008 Senior Member

    Messages:
    451
    Likes:
    734
    OH USA
    I recently had a stress test with a vasodilator rather than exercise and I felt horrible. It was instant chaos that luckily resolved but I was wiped out for two days. The feeling was heaviness on my chest, air hunger, light-headedness, panic, ringing in my ears and weakness. Not fun at all and bedridden for two days after.
     
  17. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,842
    Likes:
    4,605
    Cornwall, UK
    I often get symptoms like that, and put them down to excessive adrenaline or excessive activity in a type of adrenaline receptor. They occur most commonly when I lie down after getting into bed, and also during the night. They are unpleasant, but I have got used to them and just ignore them, and mine don't last long. I don't get them as much since adopting a leaky-gut diet and supplements and pacing activity more carefully.
     
    jimmy86 likes this.
  18. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,842
    Likes:
    4,605
    Cornwall, UK
    Why not get a wrist-type blood pressure monitor so you can check? You can also get blood glucose testing kits. Obviously the latter is rather inconvenient to do when you're lying down and maybe have poor coordination, but the bp would be easy enough to check.
     

See more popular forum discussions.

Share This Page