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Orthostatic intolerance and low heart rate

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Sushi, Sep 20, 2018.

  1. Sushi

    Sushi Moderation Resource Albuquerque

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    I have had a fairly debilitating level of OI for years. As I posted on another thread, I recently had a pacemaker implanted due to sick sinus syndrome. The amazing and unexpected side effect is that it has very noticeably improved my OI. I did a poor man's tilt table test a few weeks after the surgery and my numbers were way, way better and I could stand much longer.

    My base rate was set at 60 in the hospital. Today, 5 weeks later, I had a followup appointment, told my electrophysiologist how much my OI had improved and asked if she could bump up the base rate to 70. She did and there is even more improvement though I'll be checking out what I can do in the next weeks.

    I live next door to a health food store and have a cart to bring my shopping home (including 3 gallon bottles of water). I had been unable to pull the cart for several years--I had to stop and rest every 25 ft. Today I loaded it with a 3 gallon bottle of water and the rest of my grocery shop, and pulled it home with no problems! I am thrilled and just wanted to share with others that a low heart rate may effect OI for some. I am very thankful and am hoping that this will allow me to exercise a bit more. :)
     
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  2. Diwi9

    Diwi9 Administrator

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    @Sushi - Thanks for sharing and congratulations...one ounce of independence restored creating a much better situation for you. I hope you find other bits of independence because of this intervention.
     
  3. Dechi

    Dechi Senior Member

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    I’m so happy for you !

    I do have OI also (NMH) and feel dizzy a lot of the time, and can’t stand or walk when I crash. My heart heart is in the high 30’s sometimes at it's lowest during the night and around 48 (lowest) during the day. It will peak around 130-140 when I move about in the house sometimes, other times it’s around 60-90.

    There is nothing wrong with my heart so it seems I am stuck with this. I’ve had every cardio test possible.
     
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  4. Sushi

    Sushi Moderation Resource Albuquerque

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    That was pretty much my situation too and I thought that I had developed POTS as well as NMH--but I was wrong.
    No cardiologist had ever found anything wrong with my heart either until I started seeing a brilliant electrophysiologist (they are cardiologists who specialize in heart rhythms). So I was very surprised when she told me that I was developing sick sinus syndrome. Since the pacemaker I've had no tachycardia at all because the kind of tachy I was getting is set off by premature atrial contractions and the particular pacemaker that I got has an alogrithm that is designed to stop most PACs. Have you ever been to an electrophysiologist?
     
  5. Dechi

    Dechi Senior Member

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    @Sushi no, I’ve never even heard about electrophysiology before. Since my main problem is bradycardia with occasionnally bradycardia, do you still think it could help me ? How does your pacemaker deal with bradycardia, does it increase your heart rate then, and lower it with tachycardia ?

    Had you been seen and tested in a cardiac institute ? Had you had a table tilt test ?

    Sorry, asking lots of questions...
     
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  6. Shoshana

    Shoshana Northern USA

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    Great to hear about your improvements, @Sushi

    I wonder if it is due as much to keeping the heart rate more CONSISTENT, or on whatever patterns it does,

    rather than simple raising it, or simply the number the heart rate is at?

    Or is that incorrect?
     
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  7. CJB

    CJB Senior Member

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    This is so interesting. I've been wearing a Fitbit since December and when I started keto diet in July, I started to get anxious when my RHR started to climb. But I'm also feeling a lot better, especially the nasty vertigo symptoms. I wondered if the two were related.
     
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  8. Sushi

    Sushi Moderation Resource Albuquerque

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    My pacemaker will not let my heart rate go below the baseline setting--in this case 70--so no more bradycardia!:) It can't lower tachycardia directly but the model I have can prevent it by over-riding the premature atrial contractions that lead to it (in my case--there are other causes for tachycardia). Yes, I have had a comprehensive TTT which I failed fairly spectacularly. I see a private cardiologist/electrophysiologist who has an interest in POTS and dysautonomia. She has quite a few patients with dysautonomia. The other cardiologists I have seen knew nothing about it and did not specialize in heart rhythms--just general cardiology. They were hopeless for my condition.
    For me, it is mostly raising the rate as mine was fairly consistent bradycardia (the tachycardia aspect was controlled with meds). With a higher heart rate, circulation is better which means more blood gets to the brain and muscles and thus more oxygen.
     
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  9. Dechi

    Dechi Senior Member

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    @Sushi I’m happy it’s working out for you. You’re lucky to have such good specialists treating you.

    In my case nobody is worried about my slow heart rate, nor making any correlations with my dizziness. Probably because my GP doesn’t have the knowledge to do so. I’ve sent an appointment request to a doctor who apparently sees ME patients but that was only a few days ago and if I see him, it will probably be in many, many months,if not a year or more.
     
  10. Sushi

    Sushi Moderation Resource Albuquerque

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    Could you see an electrophysiologist? They are pretty common and a city of any size should have some.
     
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  11. Dechi

    Dechi Senior Member

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    You know what ? I checked online and couldn’t find any. I think the ones who study that field become technicians around here. I’ll ask my GP when I see her in about 2-3 months.
     
  12. Sushi

    Sushi Moderation Resource Albuquerque

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    An Electrophysilogist is a Cardiologist who does a fellowship further specializing in Electrophysiology or the electrical system of the heart which creates the heart rhythm. Here is the way to check in your area. Go to this site: https://www.hrsonline.org/Find-a-Specialist

    The ones at the top of the game will be listed as Fellows of the Heart Rhythm Society. This is the listing of the most qualified Electrophysiologists. Good luck! I always like to think that there is help out there...somewhere.
     
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  13. Sidereal

    Sidereal Senior Member

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    That's great news @Sushi!

    Sick sinus syndrome is actually listed on the differential diagnosis list in good review papers on dysautonomia/POTS. Unfortunately due to general cluelessness and incompetence of the medical profession it can take years to arrive at a correct diagnosis of any complex problem.
     
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  14. Dechi

    Dechi Senior Member

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    Thanks @Sushi ! I found some not too far, I’ll look into it when I see my doc.

    May I ask if the pacemaker has made a difference in your energy levels as well ?
     
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  15. Sushi

    Sushi Moderation Resource Albuquerque

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    Thanks Sidereal!
    That is why I wanted to highlight it--so many doctors will miss it especially in dysautonomia patients. Sick Sinus Syndrome is also call Brady/Tachy Syndrome which give more of a clue. And it is a shame to miss it when there is an easy fix.
    I think so, though it doesn't affect mental energy but rather physical energy. I can do more, but not with my brain.

    Edited to add: well today my mental energy held out too--only the second day with my higher heart rate of 70.:thumbsup:
     
    Last edited: Sep 22, 2018
  16. Dechi

    Dechi Senior Member

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    @Sushi good news, and I wish you many many more ! Let’s make a habit out of it !
     
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