International ME/CFS and FM Awareness Day Is On May 12, 2018
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Atrial Fibrillation and ME/CFS

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by Sushi, Jun 29, 2016.

  1. Sushi

    Sushi Moderation Resource Albuquerque

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    Wondering if anyone knows of a confirmed connection between Atrial Fibrillation and ME/CFS? Afib is different from the more common skipped beats and flutters that so many of us get. It is an arrhythmia that can last for hours or, in some, for days. Symptoms: very high but oscillating HR (jumps around from moment to moment because it is out of rhythm) and very elevated BP.

    And, anecdotally, I'm wondering how many here have been diagnosed with Atrial Fibrillation. I have, and it is a tough condition to deal with--even with an excellent cardiologist.
     
  2. Groggy Doggy

    Groggy Doggy Guest

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    Hi @Sushi,

    I am versed in this area of AFib, but I am not aware of any scientific research to connect AFib with ME. There are 2 types of AFib (paroxysmal and persistent). Paroxysmal occurs intermittantly while Persistent occurs all the time. It usually starts out as paraxysmal and then over time can lead to persistant.

    Depending on the opinion of your EP Cardilogist, they usually start with recommending various heart medications and possible a blood thinner. If the patient is still having issues, then they can recommend a Cardioversion. This is where you are placed under general anesthia, for a few minutes, while two electrical paddles try and zap your heart back into a normal rhythm. If the Cardioversion doesn't work, then they can suggest a Cardiac Ablation. This requires the patient to be under general anesthia from 1-4 hours. In the catheter lab, the EP cardiologist will locate and zap the over excited tissues found in the left atrium and/or right atrium. Some patients seem to be okay after the first ablation. Others need to come back in a few months and do it all over again, for a second ablation. Others need to try a third time which can be months up to many years later.

    The downside of ablations is that they can render temporary or permanent tachycardia. They can also only be performed a small number of times, before they loose their effectiveness.

    As with most surgeries, Cardiac Ablation treats the symptoms only. There is little known how to treat the actual cause.

    Do I think ME and tachycardia/AFib/Blood Pressure issues are related? Yes, absolutley, they are intertwined. OMI as you start to treat the source of our ME issues, then your heart issues will improve. Unfortunately, a cardiac ablation will not improve PEM.

    There needs to be more research in this area. Yes, I was diagnosed with AFib. I also wonder how many more of us are out there?

    GD :dog:
     
    Last edited: Jun 29, 2016
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  3. Mary

    Mary Forum Support Assistant

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    @Sushi - I'm sure you're on top of this, but I have to ask anyways, are your potassium levels okay? Low potassium is linked to afib and hypertension. Many of us, including me, have to take a lot of potassium daily, even though my blood work is always in the normal range, though on the low side of normal. I know there's something abnormal with ME/CFS and potassium utilization, I shouldn't have to supplement potassium but I do, so I do.

    I take potassium gluconate (around 900 mg. a day) plus usually a glass of low-sodium V8, which also has 900 mg. per 8 oz. The potassium in the V8 is potassium chloride. I initially tried potassium citrate but it irritated my bladder and contributed to a bladder infection.
     
  4. Sushi

    Sushi Moderation Resource Albuquerque

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    Yes, I am on both.
    Since some docs think that we have ion channel problems, this might be related.
    I test well on potassium but I need to supplement to keep in the good zone.
     
  5. Groggy Doggy

    Groggy Doggy Guest

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    Hi @Mary

    I took Rx potassium chloride for over a year, but it didn't improve my Heart issues. Oddly enough the only change I noticed was it made my finger nails stronger (results mimicked taking calcium supplements).

    GD
     
  6. Mary

    Mary Forum Support Assistant

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    @Sushi - one more possibility is hypophosphatemia. I first came across this when reading about refeeding syndrome, courtesy of Freddd. Hypophosphatemia is the hallmark of refeeding syndrome, along with hypokalemia and hypomagnesia. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2440847/

    There is a link between some forms of ME/CFS and hypophosphatemia: http://www.ncbi.nlm.nih.gov/pubmed/9683977

    And I've experienced hypophosphatemia - it can cause severe fatigue. It's also linked to afib and hypertension.
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4105385/
    http://hyper.ahajournals.org/content/9/1/96.full.pdf
    http://www.ncbi.nlm.nih.gov/pubmed/2136290

    Several months ago a supplement which initially boosted my energy ended up making me very tired (I wish I could remember which one it was!) Low potassium makes me very tired, but this felt different. After coming across refeeding syndrome, I supplemented with high phosphorus foods (kefir and yogurt), and also small doses of monosodium phosphate from Swanson’s and voila, my energy returned.

    Last week I increased my B12 and folate and, after initially feeling better, again developed rather bad fatigue. It wasn’t a crash, wasn’t low potassium and took me a couple of days to remember phosphorus. I had slacked off on the kefir and yogurt. So I restarted on kefir, added some monosodium phosphate and within about a day and half my energy started to come back.

    Unfortunately, there does not appear to be very much research on phosphorus. And the literature that does exist generally just says be careful!, that the problem with phosphorus in general is too much, not too little (just as they do with potassium)

    But I don’t drink sodas, a large source of phosphorus for many. And people with ME/CFS do have a variety of electrolyte problems.

    I think the easiest and safest way to see if hypophosphatemia is a problem for you is to drink a lot of kefir, or have a lot of yogurt – at least 2 decent servings in a day and see if it helps your BP and afib. I would not be surprised if hypophosphatemia was an unrecognized issue for many of us.
     
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  7. Groggy Doggy

    Groggy Doggy Guest

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    thanks!

    i will research this one.
     
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  8. Mary

    Mary Forum Support Assistant

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    Interesting! I wonder how that worked, but I'm not a biochemist and don't have a clue how it would have. Unfortunately potassium gluconate hasn't done anything for my fingernails. However, silica appears to be helping them, and it's supposed to be good for our skin as well :rolleyes: I recently started taking horsetail (much cheaper) in place of my liquid silica supplement, will see --
     
  9. Sushi

    Sushi Moderation Resource Albuquerque

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    Here is something interesting re: causation by Dr. JOHN MANDROLA, MD, an electrophysiologist who himself has had Afib--he implicates our companion--inflammation:
    Thanks, Mary. I will read about it. I don't have high BP except during an episode of Afib. I wish I tolerated dairy, but I don't so I'd have to find other sources of phosphorous.
     
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  10. Mary

    Mary Forum Support Assistant

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    @Sushi - one good source of phosphorus is sunflower seeds - I'm hooked on them now! (the kind with shells so I don't eat too many). from what I read low phosphorus is supposedly rare, but anything is possible with ME/CFS, and I do respond to kefir and yogurt, and the monosodium phosphate from Swanson's - good luck!
     
  11. Sushi

    Sushi Moderation Resource Albuquerque

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    Thanks, good idea. I forget about sunflower seeds but I do love them. :thumbsup:
     
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  12. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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  13. xrunner

    xrunner Senior Member

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    I only know that it can be caused by an infection esp. affecting the heart. My dad developed AF following a staph infection and it resolved once the infection was completely treated which took several weeks.
     
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  14. Jemima

    Jemima

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    Have you had a potassium test lately? Had an episode of prolonged elevated heart rate and ectopics and they said was due to,potassium drop.
     
  15. Sushi

    Sushi Moderation Resource Albuquerque

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    Yes, potassium is fine, as are other electrolytes. There must be other factors involved.
     
  16. Groggy Doggy

    Groggy Doggy Guest

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    @Sushi

    Since you are sharp and up on things, do you know if any of the Metabolic studies are researching our ME blood volume issue? I consider this to be a number one or number two priority. If not, do you feel is it from a lack of knowledge (don't know what it is or what to study), or a lack of understanding its a top priority, or something else? I am trying to establish if there is a study gap, and if so, how to resolve it.

    Thanks!

    GD :dog:
     
  17. Sushi

    Sushi Moderation Resource Albuquerque

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    No, I don't know.
    I really have no idea. I am not on any inside track. I could only make wild guesses.
     
  18. frog_in_the_fog

    frog_in_the_fog Test Subject

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    When I experienced a particularly serious episode of afib, conversion was done with amiodarone administered intravenously. Speaking from experience, I think autoimmune hyperthyroid can lead to afib, at least it did for me. With the hyperthyroid under control no more afib, though I do still suffer from random muscle twitching from time to time.

    I did ultimately make the connection to me/cfs, it was simply the matter of connecting the dots. I have suffered from many different ailments over the last decade, but it wasn't till recently I could connect them all to something that at least had a label.

    I feel as though the scourge of cfs/me has gotten the best of me, but I fight on in hopes of a better tomorrow.
     
    Last edited: Aug 23, 2016
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  19. Sushi

    Sushi Moderation Resource Albuquerque

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    I was first converted with IV diltiazem. After that I converted with oral diltiazem. Now I am on rhythm control
    I had been mildly hypothyroid and was taking a very low dose of Armour. Between my 3 month testings, I seem to have regained normal thyroid function--which combined with Amour, made me hyperthyroid. This brought on two ER visits! Now my Afib is infrequent but intense when it happens.
     
  20. Groggy Doggy

    Groggy Doggy Guest

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    Sorry to hear that. I didn't realize you had gone thru those challenges. So you are no longer taking Armour?
     

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