The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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POTS/Heart rate monitors.....confused!

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by Somer, Apr 17, 2017.

  1. Somer

    Somer

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    I've started to read around on here about POTS & use of heart rate monitors.

    I'm not sure whether to get my son tested for POTS (in UK) & wondered what the treatment is & what the benefits might be (I will check out the MEA leaflet).

    He's been ill overall for almost 5 years but started to make improvements 16 months ago. I'd say we might be on a plateau possibly at the moment.

    Before he started to show improvements he had blackouts & needed to spend a lot of his time horizontal & had freezing lower legs. Since the improvements the blackouts have stopped, he does now shower every 2nd day & can stand to do a little cooking. His temp regulation has improved. He sits up more but his walking is very limited. He's always needed to drink a fair amount of water.

    I'm just wondering if he did show up for POTS could treatment for that improve his function a bit more? Especially, physically.

    I'm worried though about making him increase his worry about his health. He's 14 this week & in a fairly good place mood wise.

    Same goes for heart monitors....
    I feel torn between something that might give him a bit more control/options in terms of fine tuning pacing & maybe even giving him some confidence to do very slow walking but also don't want him to become hyper vigiliant.

    I feel taking both further could have possible benefits but could also both backfire.
    Any thoughts appreciated - thanks!
     
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  2. AndyPR

    AndyPR Senior Member

    Lots of information on POTS here - http://www.potsuk.org/ with diagnosis information here - http://www.potsuk.org/diagnosis

    When I started using a HR monitor it helped me mentally as it showed something that wasn't right, and gave me information to attempt to work around my symptoms. Could it/has it made me hyper vigilant? I don't think so but I suppose the possibility is always there. And I'd happily be hyper vigilant about my HR if it meant that I could do more and feel better by pacing and managing my life around keeping my HR at reasonable levels. Just my two cents worth and, as someone who is 30 years older than your son, my experience might not be so useful to him. :)
     
  3. trishrhymes

    trishrhymes Senior Member

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  4. Valentijn

    Valentijn Senior Member

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    Yes, it is treatable and treatment can help a lot.

    A heart rate monitor and/or diagnosis both give more information about what is happening, and why it's happening. I find it reassuring, since it's no longer a mystery, and it can be planned around and adapted to as it changes. It can also be helpful if there's any self-doubt about the reality of symptoms.
     
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  5. taniaaust1

    taniaaust1 Senior Member

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    yes its very worthwhile getting a POTS diagnoses if he has this and getting treatment for POTS. It really can make a huge difference to some.
     
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  6. TiredSam

    TiredSam The wise nematode hibernates

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    A wrist-based HR monitor is not a medical device, it's an extremely cool snazzy electronic gizmo boys toy that will allow him to trump anyone else's poxy fitbit. Also if he can manage to be less symptomatic by defining his limits and not going over them he may feel a little more in control, which will be a good confidence boost. I think hyper-vigilance is no bad thing in this context, at least for the first couple of weeks of wearing it if he's keeping an eye on it all the time he'll spot a few things that are exerting him more than he thought they were and change a habit or two. After that things tend to settle down, or at least they did after I'd spent a few weeks obsessing over my new toy.
     
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  7. lnester7

    lnester7 Seven

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    A heart rate monitor is the greatest teacher. I learnt that my most energy demanding activities where when I raise my hands above heart ( like brushing theeth, dry my hair...) so it is a great tool to learn what takes the most out of you. Then after a few months he can stop wearing it.
    There are treatments for POTs that make life easier ( vassocontriction, betabloquers, fludocrotisone)... an electrophiologyst is he right type or cardiologist to see if you suspect POTs.
     
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  8. ahimsa

    ahimsa Senior Member

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    Folks have already posted many good links with POTS information! But just in case it helps here are a few more links.

    Video from Dysautonomia International (from their Facebook page):

    https://www.facebook.com/DysautonomiaInternational/videos/1079102622188616/

    I liked this part showing all the many symptoms (POTS = more than just fast heartrate):

    POTS Symptoms.png

    And here's a patient handout created by Dr. Rowe from John's Hopkins (PDF file). It has a brief description of orthostatic intolerance and then has some treatment suggestions:

    http://www.dysautonomiainternational.org/pdf/RoweOIsummary.pdf

    Patients can absolutely improve with treatment! Everyone is different, and not all respond to the same types of treatment, but I'd say it is worth working with a doctor to try various treatments and see which might work.

    Best of luck to you and your son.
     
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  9. Somer

    Somer

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    Thanks everyone - really helpful & lots to think about
     
  10. cyclamen

    cyclamen

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    Treatment for POTS helpes my daughter a lot. It does not make her healthy, but much more stable.
    The heart rate monitoring validates her feeling and helpes with the fine tuning of medication.

    But I know from others, that not everyone can handle it. Some might get very anxious about numbers or dependent on checking the device every other second.
     
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  11. Valentijn

    Valentijn Senior Member

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    My GP has a lot of medical anxiety. She thinks diabetics testing blood sugar will make them anxious, or that my neighbor getting his (actually broken) foot x-rayed would make him anxious as well.

    Fortunately real medical anxiety from patients seems to be quite rare. And when it does exist, it's mostly the result of a lack of tests and treatment, rather than having someone take symptoms seriously :p

    It was completely nuts watching newly diagnosed (presumed) Type 2's on a diabetes forum try to deal with hyperglycemia while forbidden to test by their doctors. Within a few days they were either pretty neurotic due to still being symptomatic, or they'd given up and bought a glucose tester to find out why they felt like hell and adapt their food and exercise behavior to cope better.

    Anyhow, unless there's a bonafide mental health problem, it's extremely unlikely that testing something will trigger health anxiety.
     
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  12. Sidney

    Sidney Senior Member

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    I am not sure if this is the right thread, but it is the nearest I've found.

    I use both a sports watch and a chest strap monitor to check HR. (Theoretically, also heart rate variability, but I don't know enough to see any correlations to my state in that.)
    I use the formula for anaerobic threshold which has several times been mentioned here: 220 minus Age X 50% or 60%. But I wonder:

    Is there an objective way to measure one's anaerobic threshold? I am nearly always over it, if I do anything at all not in bed. This doesn't surprise me, but I wonder what my threshold really is. And how do you decide what percentage to use? Might be important, if you are elderly - as I am!

    I know that your HR doesn't give data for many of the most significant aspects of ME. But it is a useful and interesting tool.
     
  13. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    The formula used for healthy people is almost useless for people with ME/CFS.

    Anaerobic threshold (AT) can be measured. The gold standard is the 2-day CPET, which can cause PEM. It is also not widely available.

    AT is part of a VO2 Max test. This test is available at some health clubs, sports medicine facilities, and rehab facilities. If you get this test you should make it clear that you want to stop the test at AT, NOT continue to VO2 Max. If you do VO2 Max, you may again have PEM.

    29May: Edited to remove a link that went nowhere.
     
    Last edited: May 29, 2017
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  14. TiredSam

    TiredSam The wise nematode hibernates

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    @Little Bluestem page not found :(
     
  15. trishrhymes

    trishrhymes Senior Member

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    Did I have a mild case of POTS and have I inadvertently cured it, I ask myself.

    For many years I have had problems of lightheadedness, blurred vision etc on sitting up or standing quickly, such that I'd often sit/lie back down in a hurry. I also had gradually worsening irregular heartbeats consisting of a missed beat followed by a stronger beat and several erratic beats. This would occur strongly enough for me to notice it several times a day, and on bad days patches of several times a minute. Quite scary.

    Then I read about POTS and decided to increase my fluid and salt intake a little. No difference.

    Then I developed acid reflux and a hiatus hernia and was advised to sleep on a slope. I acquired 2 half bed length sloping pillows that raise me on a slope from the hips up, keeping my back straight. Since then I always use one at night and both when I rest during the day.

    After doing this for a few weeks, I thought, hang on a minute, I haven't noticed any irregular heart beats for a while, then I noticed I was getting light headed on standing less often. This has continued for about 6 months. I'm hoping it lasts. I have since read that sleeping on a slope with head raised is recommended for POTS to help maintain blood volume, if I understand it correctly.

    Unfortunately it's made no difference to my other ME symptoms, including the heavy, weak, about to collapse feeling in my legs when I stand or walk that means I can't stand for more than a couple of minutes or walk more than about 10 metres without an urgent need to sit or lie down. I've had this right from the start of my ME, despite being pretty fit for the first few years while my ME was mild and I continued working, so it's not just de-conditioning, though the distance I can walk has reduced over time as my ME has worsened.

    Edit: sorry, I've gone a bit off the thread topic here, talking about a different aspect of pots. Still, I hope it helps someone.
     
    Last edited: May 29, 2017
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  16. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    Bummer. It looks like that was posted in 2010 and has since been removed. I guess someone didn't check her link before posting it. :redface:
     
  17. Sidney

    Sidney Senior Member

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    I looked her up, and she has a very interesting site: http://occupyme.net/exercise-testing-and-results/
     
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