arrow74 Comments
  1. Issie
    Nov 01 - 4:58 pm

    Nice write-up Cort. I really appreciated the video (I’ve only watched the first one, so far). That is what some of us POTS people feel about the way POTS is being treated. If you lower down the heart rate and tachycardia that our hearts are doing to try to move blood around to vital areas (brain, heart) then the results may be worse than trying to put up with the fast heart rate. Many POTS people are found to have low blood volume too. I think when we are talking about POTS/CFS/ME/OI etc. We may be looking at the elephant in the room. Depends on what part you look at as to the DX you get. There seems to be so many similarities.

    One thing I didn’t notice him discussing was MCAS (mast cell activation syndrome). For those of us that have this, we notice these higher heart rate surges (tachycardia) while at rest also. There is also a mast cell release that happens in the late night. Most of us are very careful to take our H1, H2’s and mast cell stablizers at night if we want to get a comfortable, uneventful, whole night sleep. Otherwise, we can wake with a jolt of anxiety, fast heart rate, and just generally feeling like we are going to die. Since I’ve been on my MCAS treatment – this seldom happens to me. When it does, I realize that I probably did something to trigger a mast cell degranulation —food, stress, strong emotion, activity. If I under medicated myself —this is my result. Some people are figuring out how to manage their mast cells with diet alone. So far, I don’t have that mastered. I recently tried coming off my GastroCrom with much disaster. Since that also addresses your immune system in the gut area – I figured it must be doing more than just helping me with mast cell problems. It somehow is helping to stabilize my faulty immune system too.

    Good info here Cort. Lots of doctors now recognizing that some of the things our bodies do is a compensatory response and is very necessary for what our bodies are trying to correct. Despite how uncomfortable it may make us —-it may be keeping us alive with some of these uncomfortable responses. He talked about high catacholamines and I’m one of those. With high noriepi levels upon standing that gave me the HyperPOTS label. With this HyperPOTS label, so many of us with this have MCAS and also EDS. The triology we call it. Most of us have found the addition of treatment for MCAS has brought us much relief.

    Issie

    • Carole
      Nov 02 - 11:33 am

      Issie- What is the MCAS TREATMENT?I am falling way behind on all of this.

      Under a lot of stress lately and can’t use my CPAP machine . Anyway
      Tachycardia and Palpitations are big right now. Not much help from
      Physicians here -not even considering ME or Cfids.

      Carole

      • Issie
        Nov 02 - 12:09 pm

        Sorry about your CPAP – it takes time and lots of determination. You may have to play around with different headgear before you find what’s comfortable. If you use it for 4 hours a night you are considered compliant BTW.

        The mast cell treatment is an H1 (Allegra) H2 (Zantac) and mast cell stabilizer (GastroCrom). These are the ones that I use and have had the most success with. There are also foods that need to be avoided as they cause histamine release. There is a girl that is controlling her mast cell with food alone. I have not been able to do that. I’ve tried.

        The doctor that is best known for treating MCAS is Dr. Afrin in South Carolina. He is the one that most try to see if they can’t get a local doc to help them with this. I just got a note from a friend whose son sees him and he isn’t taking new patients right now – but, will work with your local doc to get the proper testing done to determine if this is your issue. There are Mast Cell Forums that you can get more info from. Too much for me to write about as a reply. If you want me to e-mail you, have Cort send me your e-mail.

        Issie

        • Carole
          Nov 02 - 1:26 pm

          Issie- I live in Georgia-so that would not be far for me to travel.
          I will send Cort my e-mail and you can e-mail me if you want to.

          Thank you for all your helpful and informed info. Found out my CPAP was titrated way too high. Getting another study.
          Anyway.

          Thank you so much,You need to have your own comment page!!!!!

          Carole

          • Issie
            Nov 02 - 1:34 pm

            Yeah, Cort keeps trying to get me to write one and I just don’t want to. I guess you just have to keep looking for my comments on the ones others write.

            Issie

            • Issie
              Nov 02 - 10:08 pm

              LOL! As Cort pointed out to me —I don’t need a comment page –he wants me to write a blog of my own. But, I’d rather just make comments. But, if I had my own comment page, I could refer back to my comments and say —look at number 10 or 50 for that answer. :) I wouldn’t feel like I’m repeating myself so much. I just hope something I say – helps someone else.

              Issie

      • MK Gilbert
        Nov 02 - 1:06 pm

        and how do we find a Dr who even knows anything about ME/CHF and all this stuff? In 26 yrs I haven’t seen even ONE who really knew anything about it at all! My nutritionist wants me to take the natural form of Synthroid (ERFA, I think), oxytocin and try cortisol for a month~but I need a prescription for all those~don’t know where to turn~No insurance or $ to spend…I guess there’s no hope for people like me then?

        • Issie
          Nov 02 - 1:35 pm

          They are out there. But, the one thing you can do for yourself and it requires no money is change your diet. That is our key. DIET!

          Issie

  2. Betsy
    Nov 01 - 6:03 pm

    I was told by a cardiologist this year that my heartbeat isn’t normal, but isn’t concerning. That following a long medical story, but just so glad to know that the rhythm and occasional chest pain is likely CFIDS related as I doubt I’d ever find a doc who could connect the dots for me. Cort, it sounds like you might have pulsatile tinnitus and with that and also dizziness you might want to read about a condition called Superior Canal Dehiscence Syndrome. I suffered with this for 5 years and saw the 2 “best” doctors in Colorado for it before finally in desperation I had to fly to Louisiana to have a craniotomy which sounds bad but was not a big deal. 2.5 hours later and 5 years of miserable symptoms were gone. Just keep it in mind if your symptoms get worse. It’s not CFIDS related but most docs don’t know much if anything about it.

    • Cort Johnson
      Nov 02 - 12:40 pm

      The dizziness does make me think something else may be going on. Thanks for the tip…That’s amazing that the craniotomy worked so thoroughly and quickly!

      It’s definitely worse with stress and with over exertion for me.

      • Carole
        Nov 02 - 1:28 pm

        Stress definitely causes me Papitations and dizziness. The problem is you don’t know until you are in the storm.

        Carole

  3. ahmo
    Nov 01 - 6:14 pm

    For me, heart irregularities is always low potassium. If only I’d recognized years ago that my ongoing symptoms of light-headedness, feelings of imminent fainting, were also potassium. Now I know, life is so much easier. cheers, ahmo

    • Rich Perillo
      Nov 01 - 6:55 pm

      Was that low potassium by blood test or found by trial and error?

    • Issie
      Nov 01 - 8:01 pm

      Interesting that you mention potassium. One thing I’ve found that helps when I’m having a POTsie day and lots of tachycardia is take a tablespoon full of Black Strap Molasses. That is high in potassium and iron. It tames my tachy down within about a half hour.

      The other thing I use for tachycardia is Motherswort tinture. That helps me in about 20 minutes.

      Issie

      • Carole
        Nov 02 - 11:42 am

        Where do you get the Mothers Wart Tincture??

        I use Mag Sulfate (small amount) Our Kids brand with out Preservative on back of legs or shoulders. Also take 2 baby aspirin. Stops it in about 15 20 min. Also when I can use CPAP machine.
        Interesting about the Pottasium. I do take that daily.
        On 30 day Holter Monitor my HR went up to 155. Which Dr. said was not
        high? Usually is 15-78. Systolic is low-Diastolic is high (varies)
        Very interesting posts.

        Carole

        • Issie
          Nov 02 - 12:13 pm

          You get the Motherswort at the health food store. I use the Gaia brand.

          If you have mast cell problems, aspirin will cause a mast cell degranulation. It is being tried in a very small amount on a daily basis by some with MCAS. The idea is to create a small release instead of a huge dump. Some are able to use it. I was not able to. It caused my symptoms to be worse.

          Issie

          • Carole
            Nov 02 - 1:35 pm

            Thanks Issie- Just started aspirin about a month ago. I have also been diagnosed with Vestibular disturbance. Was given exercises to do to break down crystals in one ear canal as I was having serious dizziness. It is better within 10 min of doing exercises. Just turning head for 2 minutes to worst side first and holding and then to other 2-3 times. I do 3 times a day.

            Carole

    • Aravir
      Nov 02 - 9:40 am

      My heart issues started 2 years ago when I started a diet that messed up my electrolyte balance and at the same time I took tons of calcium and potassium and ended up with an incredible chest pain. Since then I have had arrhythmias, palpitations, heart fluttering, spasms, you name it. Things improved a bit while getting CFS drip (with vit. and minerals) the spasms are gone and I have less of that fluttering feeling. But the palpitations are still there, I know that this issue is related to electrolytes but I can’t find a doctor that is knowledgeable about it and when I tried to fix it myself I messed up big time.

      Re-focusing too much on my heart. I have had CFS for 30 years and I have closely watched my body since the beginning of my illness and I didn’t have heart issues. Basically I don’t think that there is a psychological component here.
      On the other hand I’m sure that the neurological system is involved. Also, a very similar thing happens to patients with Lyme disease, Dr Klinghardt talks a lot about that and Atrial Fibrilation.

      • Cort Johnson
        Nov 02 - 12:42 pm

        I’m with you on this….my ‘heart issues’ really haven’t cropped up in a meaningful fashion until this year – even though I’ve bothered by body sensations since ME/CFS began.

    • MK Gilbert
      Nov 02 - 1:07 pm

      How much potassium do you take? and in what form?

  4. Darlene
    Nov 01 - 7:02 pm

    Another great article! It’s good to hear something reassuring about symptoms that can be so disconcerting.

    • Cort Johnson
      Nov 02 - 12:43 pm

      Indeed!

  5. Gijs
    Nov 02 - 4:54 am

    I don’t agree with Visser that the hartproblems seen in ME are not dangerous. The Statistics of the average ages at death were: 58.7 years for the CFS heart failure deaths, versus 83.1 years for the population overall Jason et al., Health Care Women Int. 2006 Aug;27(7):615-26. There is more evidence that an overactive autonomic nervous system is dangerous for your health.

    • Marco
      Nov 02 - 6:37 am

      I have to agree.

      The autonomic dysfunction seen in ME/CFS (including raised resting heart rate and reduced heart rate variability) is universally recognised as a major risk factor for early death by cardiac arrest in a wide range of conditions. That’s not to be alarmist but a mere statement of current medical opinion.

      This article did remind me of one of the most striking adverse reactions I’ve had to meds. I’d been having severe overheating problems and my GP prescribed a beta blocker on the not unreasonable premise that sympathetic over-activation might be to blame.

      It worked – big time. The first day I went from overheated to absolutely freezing and felt so awful I had to stop them or else I wouldn’t have made it back to work after the weekend.

      Not to say that it was the wrong approach. Possibly just to high a dosage? After all, if the parasympathetic arm of the ANS is low and you then whack the sympathetic side, what does it leave – the enteric?

      • Gijs
        Nov 02 - 8:18 am

        Probably this overactive sympathetic reaction (ANS) and high catecholamines in the blood is a reflex to compensate a bloodflow problem in CFS/ME. I think this is the key problem of this disease. We have to find out why? That is why beta blockers don’t work and have adverse reactions especially a high doses. It proves -in my opinion- that it is a compensating reaction. Vasculair bloodflow dysregulation is the key for all our symptoms.

        • Issie
          Nov 02 - 10:13 am

          I agree, and that’s what is thought with POTS too. There is a blood flow problem especially from the heart level up to the brain. My doc feels it’s connected to the over abundant amount of biofilms and pathogens within them – causing not only clogging of the veins but dysfunction of them because it adheres to the walls of the veins. Breaking this down and getting rid of so much of it and what lives in it (protozoa, virus, bacteria)—makes sense. He feels that there is especially an issue at the vena cava area of the heart. There are two parts to this vein, one going to the brain and the other returning from the body. I was looking this up last night and found another doctor talking about this same thing as something he felt was an issue with POTS. This can cause issues with the right side of the heart and also cause CCVSI and the ability of blood to go to the brain properly. If you research it, in detail, it seems to make sense. Here is the article/video I pulled up.

          http://mdwme.blogspot.com/2013/04/dr-paul-cheneys-latest-observations.html

          The most effective way of working on this problem is with diet. My doc is finding that you have to lower your fat down and that includes becoming vegan and not having animal fats, lowering down consumption of magnesium and also arginine. Most of us have found that we do better on a gluten free diet too and that could be because wheat is high in arginine. Magnesium causes the biofilm to be stronger and resistant to being broken down.

          Issie

          • Carole
            Nov 02 - 11:52 am

            I was a patient of Dr. Paul Cheney’s for years. I totally disagree with him. He told me I was in critical heart failure a year ago. I was not. Told me to go home and do nothing. He over treated me on everything and I became worse than I have ever been. To me his premise is-You are so sick no one else can treat you. I went off all his meds and continued to get better. Not recovered, but better.

            I was walking a mile a day until I went into see him. He told me to stop and the only reason I went in was I knew he was treating more heart problems. He totally misdiagnosed me.

            Don’t waste your money or your time. He didn’t even offer to do any blood tests on me -just the echo and it cost me a fortune.
            Carole

            • Issie
              Nov 02 - 12:16 pm

              Sad!

              What I found interesting though is what was said about the vena cava and the way that works.

              The doctor I see is Dr. Stephan Fry in Scottsdale, AZ. I’m VERY, VERY happy with him.

              Issie

              • Carole
                Nov 02 - 1:41 pm

                Wish I could find someone here or close by that I was happy with rather than the rolling of the eyes when I show them testing done by
                CFID Dr. Doesn’t matter whether they agree -just READ IT.

                Carole

                • Jen
                  Nov 14 - 10:04 am

                  When I was seeing an NHS “specialist” for ME/CFS. I was having intense palpitations and fainting fits amongst other things. I started measuring my blood pressure and found I had very low BP & high heart rate and when I matched the data with my diary I found the days my BP & heart rate were worse when I was having a worse time with ME. I took all the data, thinking I was on to something concrete, the specialist scoffed at me, then berated me for having the audacity to test myself. I was having no tests on the NHS, which is a HUGE problem with the prejudice against ME/CFS patients. He even wrote to my GP who also told me off and started to become unhelpful and ‘sniffy’ with me so I had to change GP’s. I had no other investigations and that’s when I realised the whole ‘ME Specialist’ thing is a con in the UK and few professionals take the illness seriously and often refuse to investigate anything. How scientific is that? I would love to have been professionally monitored, even if it was to disprove my theory. This article shows I was probably right and my symptoms did warrant further investigation. The ignorance of basic science and prejudice against patients with ME/CFS is astounding. It’s a malicious and negligent crime against desperately ill people who just want some answers. Until there is proper diagnostics and routine testing for patients with ME/CFS we will continue to live in the corrupted dark ages of medicine.

                  • Cort Johnson
                    Nov 14 - 11:33 am

                    What a nightmare, Jen. to be a good patient – and to be treated like that – that’s really rough.

    • Cort Johnson
      Nov 02 - 12:46 pm

      Marco is certainly right; reduced HRV is associated with increased risk of earlier death (I don’t know how much – it could be a year or two years or ????). I’ve always been really leery about that study; it came from self-reports of deaths on the NCF website. A study by Buchwald that took a more statistical approach did not find increased mortality in ME/CFS. I don’t entirely trust that study either. I think we need more studies!

      • Issie
        Nov 02 - 12:54 pm

        AMEN!

        You wonder with severe tachycardia – how many beats do we get in a life time. Yet not getting any body benefit from the heart work out.

        Issie

    • MK Gilbert
      Nov 02 - 1:10 pm

      Personally, I’d rather die of heart failure relatively young than have to go on living like this for another 20 yrs or more~I’ll be 58 in a couple months, and if I can just live one more year to see 2 sons get married/settled I’ll be happy~would be nice to see more grandchildren (have 1 who’s 1 today!) but it’s hard to even want to keep on keeping on when the fatigue and depression get so bad…at least 1/2 the year I wish I could just hibernate.

  6. Wayne Hoover
    Nov 02 - 6:44 am

    I, unfortunately, experienced severe cardiac damage at age 33. I am now 57 and it has been a long, difficult 24 years. Not being able to tell the difference between true cardiac disease symptoms and those attributable to fibromyalgia. There have been times that I am sure that some symptoms were true cardiac events requiring interventions with stent and the usual cardiac medications.. I have just been diagnosed with congestive heart failure. A pacemaker is on the horizon.

    • Cort Johnson
      Nov 02 - 12:17 pm

      Good luck Wayne

  7. Caledonia
    Nov 02 - 11:03 am

    My mom had ME for 37 years. Growing up, I remember she had to do several trips to the ER with super fast heartbeats that wouldn’t slow down. She eventually went on a beta blocker. There are two problems with a beta blocker, which I found out later. One is that it will make you even more tired. The other is that it depletes melatonin and thus causes insomnia. My mom barely slept for decades. I wish I had known about this then and had her take melatonin.

    I used to have skipping heartbeats. Now that I take magnesium, I don’t have them anymore. If you have skipping heartbeats and low adrenals or adrenal fatigue, you should suspect problems with electrolytes, as the adrenals regulate electrolytes. If the adrenals are low, the electrolytes will be leaking out. So you need to replace them often. I do a homemade electrolyte drink four times a day. (magnesium, vitamin C with ribose, salt) Some people might need potassium in addition.

    The other heart thing I have is waking up during sleep with my heart racing. This appears to be due to B12 deficiency. When I get enough B12 either through diet (beef) or supplementation, this problem goes away. When I don’t get enough, the problem gets worse.

    I’ve had improvements in my thyroid and adrenals with methylation treatment. I don’t need as many electrolytes, and like I said my nighttime heart racing gets better with B12. I believe all of the heart related problems are actually methylation problems, i.e. folate and B12 deficiency causing glutathione depletion, and should be resolved with methylation treatment.

    • Issie
      Nov 02 - 12:02 pm

      I also am addressing my mutations related to methylation. I also have added the methyl form of B12. I wasn’t able to take the other kind. But, this one am tolerating a few times a week. I also do other things in regards to my mutations with this. A person can do 23&me and find out your genetics and then run that through Genetic Genie and get your mutations. It was also more educational to me to run my raw data through Promethease. I got lots of info there.

      My doctor feels that we crave magnesium and he feels that we deplete it due to the use by the biofilms. If you get the number of biofilms in the system down – then the magnesium levels balance out. There will be a period of low magnesium until you can get your system working better. Magnesium was one thing I was very resistant to give up when I started this. But, now that I’m having such improvements by doing my diet – I have to trust that my doctor knew what he was talking about. I also have less tachycardia now. Not as many problems all the way around. I asked him one time about continuing the magnesium because I felt it helped my sleep and he said in the long run you just keep yourself sick because you increase the strength of the biofilms and then you can’t get to the pathogens that live there. You will get worse before you get better —but the end results will be worth it. (That’s proving to be true for me.)

      I’m not advising anyone to stop their magnesium —-you have to have a plan and that in place before you can consciously make changes. I had to research this —to death —-before I was convinced that this was the proper way for me to go. Once I understood the reasons behind it and the science. I could finally commit to it. You have to be willing to commit to it for the long haul. It won’t happen over night. This has to be a slow process. You can’t break off the biofilms in a fast way. If you think about what the consequences of that would be —-blood clots. It has to be done slowly and gradually. There are many ups and downs and times of thinking you are worse (cause you are). But, each time I’ve gone through a bad spell, the other side has made me stronger and improved.

      Issie

      • MK Gilbert
        Nov 02 - 1:16 pm

        How do you know if you have biofilms? Could that explain the irritable “bladder” which I have so much of the time? I WISH I could find someone who really knew about this stuff who could help me! But with no insurance or $ to spend…

        • Issie
          Nov 02 - 1:43 pm

          We all have biofilms. It is a normal thing in our bodies. It’s when we have too many of them and they house some pathogens that may be making us sick that there is a problem. Bacteria, virus and protozoa live in these biofilms. It’s a whole community. This also keeps the immune system from recognizing these things and eliminating them.

          Everyone can do the diet. That cost nothing and has made a huge difference for me. You have to educate yourself on how to do it smartly though. It is mainly the McDougall diet and I also looked into Forks over Knives and Engine 2. They are all about the same. The key is the low-fat part. There are many videos on the net about this lifestyle. You have to educate yourself and know why you are doing something – or you won’t stick with it.

          Issie

  8. PM
    Nov 02 - 12:35 pm

    High doses of beta blockers do wonders for my tachycardia and SNS over-activity. Even with low blood volume there is no danger taking beta blockers – I have checked and double checked with my cardiologist and ME-expert. My doctor is clear on this, I have low blood volume, take beta blockers, but my organs, muscles and brain received the right amount of blood even if my heart has a lowered BPM.

    • Issie
      Nov 02 - 12:43 pm

      Those of us with MCAS can’t use beta blockers – it degranulates mast cells.

      Issie

      • MK Gilbert
        Nov 02 - 1:19 pm

        A Dr tried a beta blocker with me over a year ago, and it took me months to figure out that it was giving me weekly BiPolar II mood swings~wondered why the “seasonal” depression didn’t let up but went clear into June! Symptoms stopped as soon as I guit taking the beta-blocker, altho I still get some BiPolar II-like mood swings in the fall and winter~I also have found that Melatonin aggravates the depression.

    • Cort Johnson
      Nov 02 - 12:48 pm

      That’s interesting. Thanks for letting us know. This subject is nothing if not complex. I know several people who have been helped by beta blockers.

      • Darlene
        Nov 02 - 1:55 pm

        I’m one of the ones who is very pleased with my beta blocker. I just use basic old propranolol (it’s cheap), not a high dose, and I’ve been on it longer than any other med. Almost 16 years. I’ve stopped taking it several times (at least 3) for various reasons but I always come back to it because I feel so much better when I take it. I don’t seem to have any side effects from it, and it doesn’t seem to make sleep or depression worse. I think that one of my biggest problems (maybe only THE problem) is with my autonomic nervous system. Most of my meds and supplements, pacing strategies etc. are all about keeping myself from flipping into and staying in hyper-drive mode. I did all the heart tests, or at least the main ones, and was found to have only a mild arrhythmia and a slightly elevated heart rate, neither of which concerned the docs. I tend to agree, since I feel like I’m quite a healthy person aside from this CFS that has me housebound right now. ha. I’m sure beta blockers aren’t for everyone, and I’m not a fan of taking meds that you don’t need, but this is one that has been very beneficial for me.

        • Esmé de Groot
          Nov 02 - 4:24 pm

          I can tolerate 10 mg propranolol only when I have a kind of adrenalin rush. If I use it daily it makes me more tired. But when I take it when I have something exciting to do or just a lot of stress it really helps to lower my hartrate and blood pressure (not low enough but lower than without) and to prevent sensory overload. It does not always work and I also need to take one afterwards but it does make a huge difference.

          • Cort Johnson
            Nov 03 - 12:35 pm

            Interesting Esme – I love the fine-tuning. Did you come up with that on your own or did your doctor suggest it?

            • Esmé de Groot
              Nov 03 - 2:00 pm

              I once had a Dutch ME doctor who prescribed me propranolol. He told me to take it at night to lower the heartrate during my sleep. His theory was that I would sleep better and be more rested the next day. That did not work out eventually.

              But while i was using it, on days when I had sensory overload I noticed it lessend after I took the propranolol at night, Then I tried to take it when I felt an adrenalin rush or when I knew I would get one. And it helps, I think I can prevent sensory overload in 75% of the occasions. And that matters as the overload can make me feel so bad I need to be in a dark room for two days.

              According to De Meirleir – who I saw later on – the high adrenalin and the matching high blood pressure makes the blood flow to the small vessels less. So lowering the pressure makes the flood to the brain more easy.

              Later I discussed this with Visser but I don’t remember exactly what he said about this. We talked about the inability of the nervus vagus to slow down the heart rate and to regulate the blood pressure and that propranolol helped just doing that.

              I had the ultrasound of the blood flow to the brain you will see in a later video and the blood flow decreases too much while sitting up or standing. So I know I have a problem there anyway.

              • Issie
                Nov 03 - 6:15 pm

                Propranalol is a trick that many people use for stage fright. It is something that can be used when needed. Nice that it works for you.

                I wonder if you’ve ever been evaluated for Dysautonomia? Your issues with being upright are very typical for us with POTS. There is a definite blood flow problem with us.

                Issie

  9. Carole
    Nov 02 - 1:18 pm

    Good Post- however everyone is different as to what works. I take Hydroxy B-12 daily sub q and IM higher dosage 2 x weekly . This makes all the difference. I also take compounded Adrenal
    supplement – compounded Vit A. Mag seems to help with 5 mg Valium and Cpap at night to
    help sleep and heart Palpitations. If I wake up I use Mag sulfate paste. They stop and I can go back to sleep. Don’t have it as much during day. Palpitations.
    OF COURSE THERE IS ALWAYS STRESS!!!!!!!!

    CAROLE

  10. Darden Burns
    Nov 02 - 1:56 pm

    Dr. Farrand Robson, the developer of Oral Systemic Balance successful treats heart irregularities in patients with Chronic Fatigue Syndrome and other heart disorders. When a person has difficulties maintaining their air passage this places stress on the autonomic nervous system and specifically the heart. With specially designed oral appliances that are custom fitted to individual patients balance can be restored to the nervous system and the heart. Robson uses EKG and heart ultra sound equipment to diagnose problems and makes adjustments to the appliances which result in quantitative improvements in heart function. I have personally observed as a patient. In my opinion this is one of the most significant developments in medical science of our time. Robson’s discoveries are greeted with skepticism by many in the medical profession but for those of us who have gotten results and the doctors including cardiologists who have observed his work we know that this therapy is for real.

    • Cort Johnson
      Nov 03 - 5:11 pm

      Interesting Darden – thanks for passing that on.

  11. James
    Nov 03 - 12:28 am

    I was surprised to read Cort’s statement that high heart rate is common in CFS. I was wondering if anyone else has a heart rate that is slow to rise with exercise. My resting is in the mid 60’s and even with exercise like walking a few minutes (which is about all I can do without relapse) it will only rise into the 80’s. Heavy exercise (lifting heavy stuff for a minute or two) might get it over 100 but it will totally wipe me out so it is not sustainable. I also have trouble off and on with my heart sort of gurgling/skipping beats when I lie on my right side, probably something with the way it’s pumping. I’ve had several tests (EKG, echocardiogram, 24hr holder monitor) over the 15 years I’ve had CFS and nothing but minor issues, at least by conventional standards. Also some heart stuff may be hormonal, I took pregnenolone for awhile and had skipping beats a bit for the first month but then that went away.

    • Cort Johnson
      Nov 03 - 12:34 pm

      I’m glad you brought this up James.

      This is another thing entirely…the inability to raise your heart rate to normal levels during exercise is something called “chronotropic intolerance’ and it appears to be common in ME/CFS as well. S you tend to have higher than normal heart beats during rest and lower than normal heart rates during exercise – just the opposite of what you want.

      From what I can see it appears that the system has kind of ‘burned out'; it’s on edge – it never relaxes but when it’s pushed – it poops out…

      Thanks for bringing that up. It’s a fascinating part of ME/CFS.

  12. […] Veldig interessant om hjerteforstyrrelser og ME via ~ME-nytt~ http://www.cortjohnson.org/blog/2013/11/01/heart-palpitations-heart-poundin-heart-fluttering-oh-lord… […]

  13. Ga
    Nov 03 - 4:12 pm

    My very first symptoms were heart related. Tachycardia and Bradycardia. I was finally diagnosed with mitral valve prolapse and POTS. I was put on florinef. It made things a lot worse. Over the years I’ve tried medication for my heart. Tenormin and beta blockers. Nothing worked. When I was in my 20’s my cardiologist wanted to ablate my sinus node and put a pacemaker in. What’s interesting is both times I’ve been on immune modulating therapies my heart problems went away. There is no doubt in my mind it’s related to M.E. and that it’s a problem that must be addressed. The M.E. ICC doctors both from 2003 and 2011 document seem to take it very seriously. If anyone has heart symptoms don’t let anyone poo poo it you should go to the E.R. or see a cardiologist. I’ve read about too many patients who have died of heart related issues.

    • Cort Johnson
      Nov 03 - 5:07 pm

      Thanks. You have really been through it -and to think that immune modulating therapies worked best. That is really interesting…Thanks for relating your experience.

    • Issie
      Nov 03 - 6:12 pm

      Good you didn’t have your SI node ablated. Most POTS people that have that done – get worse. I do feel that autoimmiune issues are the BIG part of our picture.

      Issie

  14. Kathy
    Nov 03 - 9:29 pm

    I’ve had mitral valve prolapse most of my life, though not officially diagnosed until my 20’s. I was considered to have chronic fatigue at various times, but about 8 years ago my system “crashed”..or as Cort said, poops out ;). Current diagnosis fibromyalgia. Interestingly though, is that prior to this I was told by my cardiologist that I have Mitral Valve Prolapse Syndrome, which if you read about it has pretty much the same as dynamics as CF and fibro. With all these different ‘labels’ there is a commonalities of dysfunctional autonomic nervous system, symptoms of heart issues and/or circulation problems, exercise recovery problems, non-restorative sleep, and the list goes on. I do find that supplementing with electrolytes and minerals does make a huge difference; I also see a difference with CoQ10 and proper hydration. I’ve haven’t been on this protocol for long so I’m hoping there will be noticeable improvement. For now I’ve ordered the Hydrolyte (Gookinade) to see how that works before experimenting with home blends. To understand the cardiac and circulatory issues, and what I can do about it, has encouraged me.

    Kathy

    • Cort Johnson
      Nov 04 - 12:42 pm

      Good luck on the blood volume enhancers, Kathy..I’ve found they can be quite helpful at times. Even a 10% boost is great!

      Those commonalities give me hope that when researcher finds something in one disorder the news will spread to the others.

  15. Melissa Rosa
    Nov 03 - 10:59 pm

    Wow it is shocking what is going through my mind reading this article. The arythmia and tachycardia at nite n day is exactly why I recently was put on nadalol,which is helping the condition. I’m currently researching cvs/me cause all the signs n symptoms explain my health history,why with all drs I see do I figure it out. At least now I know why I feel exhausted all the time,back to the cardiac issue my cardiologist said she only saw this on one other patient of hers. I’m going to email this article to her and see what she says.

    • Cort Johnson
      Nov 04 - 12:40 pm

      Thanks Melissa, please let us know what she says.

  16. Geir Frivold, MD (Cardiologist)
    Nov 04 - 11:57 pm

    The observation that ‘heart rates tend to be elevated in patients with ME/CFS’ is consistent with the theory of ‘sustained arousal’ as a basis for the illness. The constant state of ‘stress’ may impact the autonomic (automatic) nervous system in a way that alters the balance between the sympathetic and the parasympathetic (accelerator and brake) nervous system. In addition to autonomic dysfunction affecting Heart Rates, the condition may also affect bowel function and impact the immune system adversely. In an attempt to prove the theory of ‘sustained arousal’ , Professor Vegar Bruun Wyller, MD, PhD (Univeristy of Oslo, Norway) is, with colleagues, conducting the ‘NorCAPITAL-trial’ using the drug clonidine in adolescents with ME/CFS. I am unaware of the outcome of this trial, but eagerly waiting for the results to be published.

    The Heart Rate problems, digestive issues, immune dysfunction, pain syndrome,’brain fog’ etc. can potentially be treated with drugs, but all these drugs have potential side-effects (and some even serious) – and only address some of the results of the illness – not the underlying cause. More promising would be to be able to affect the ‘sustained arousal’ on a basic level.

    The ME/CFS syndrome – is likely not a single disease/disorder with a single cause and ‘cure’.
    There are likely a variety of triggers – often a serious infection or very traumatic event.
    I know some are very adverse to the idea that thought processes can have any role in the propagation of this disease, but as you know Cort, I have been very impressed with the dramatic improvements I have observed in the patients I have seen address their illness from this angle – even after years of disabling illness – when hope for a cure had all but faded.

    • Cort Johnson
      Nov 05 - 10:18 am

      That Geir..

      I was just informed that Dr. Wyller reported at a conference that the Clonidine study was not successful – which honestly, surprised me.

      With regards to thought processes – since this is, at least in part, a stress response disorder – I don’t see why reducing stress in that manner wouldn’t be helpful for some people. It is for me – it’s no panacea – but it’s pretty clear to me that fear, anger, frustration, worry, etc. all knock the ANS for a loop in me…and removing them is beneficial both for my quality of life and health.

      • Issie
        Nov 05 - 2:21 pm

        Clonidine suppresses the sympathetic system in the sense that it lowers the heart rate. If you lower the heart rate too much when there is already a blood flow problem —what would be the consequences? Long term – not so good. This is one of the drugs tried with HyperPOTS (the kind I have) —it does lower the pounding heart rate down – but, it caused me to have severe blood pooling in my legs and feet. It was good to have relief from the high heart rates —for a time —but, not something I could stay on. Like I’ve said –some of us are feeling the tachycardia is a compensatory thing and something that is needed by our bodies. So, doesn’t surprise me that this drug didn’t prove out to be what was expected for what they were trying it for.

        However, when I did come off this it had balanced out my liable blood pressures. I can swing from highs to lows and after this – hardly have that as an issue now. (This was all before my diet. I feel that DIET is our key and what is helping me the most.)

        Issie

  17. geoffrey brown
    Nov 05 - 1:22 am

    in Jan I had a fall and broke my sternum heart test showed something wrong 8 days later I had open heart surgery to replace my aorta valve
    my heart was in pristine condition but there were large infection burn holes in the leaves of the valve
    nobody seems interested I have had me/cfs mcs fms for 26 years first an mri on my brain showed viral damage which has destroyed my short term memory now this
    cant see cbt and get fixing this
    what a joke

  18. Katie
    Nov 05 - 3:29 am

    Hello everyone
    Thank you for your fascinating post, Cort. I am severely affected and really struggle to read – and esp. to comprehend! – but I’ve now taken it in I think! (Sadly can’t watch the videos ATM).
    I’ve been ill for a good 12 years now most of them housebound. And interestingly cardiac problems were one of the first set of symptoms I encountered when I first became ill – and long before I was diagnosed. I was in my final year of university and mega fit but started getting pounding racing heart during any exercise.
    And today it remains a huge problem – I have tachycardia including at rest and sleep, arrhythmias and for me the most intrusive of all is an insanely powerful pounding heart beat…
    I notice you don’t mention that separately in the post. So you think it’s tied up with the other types of cardiac symptoms? I’m not convinced it is! Do you differentiate between racing and pouding?
    I was prescribed atenolol for a year and found the side effects unbearable but two years ago I was put on bisoprolol and I have to say it really suits me. It has reduced the racing and regulated some of my skipped beats. Little concerned now that a beta blocker could be aggravating my problems, though, ESP issue of reduced blood volume..
    But still I get the pounding heart and wonder if I’m alone in this? When I rest I lie completely horizontal and alway flat on my back (which for some reason I cannot explain, this has always made my cardiac symptoms the least instructive. (Lying on either side makes them way worse!). And even after two hours of no stimuli etc my heart will still be pounding so hard that it actually makes my bed/head board vibrate!! I kid you not, really has to be seen to be believed ;) My carers never failed to be amused by it!! Any insight gracefully received…

    Many apologies for such a lengthy/ rambling comment. Never had the chance to learn about/ comment on my horrid cardiac issues and never been well enough to visit a hospital for an ECG etc.
    Thank you once more, Katiex

    • Issie
      Nov 05 - 3:00 pm

      Could you possibly be having tremors? Some of us with POTS do have tremors and that could cause you to shake with your heartbeats. Or it may feel that way.

      With me, I have tachy with upright posture and that’s connected to my POTS. But, I also have tachy with lying and that is more connected to MCAS (so, it’s thought). I have issues with lying on my sides too and my doc feels that has to do with problems with blood flow (he feels due to obstruction by biofilms with protozoa). Most of us with POTS feel better lying down. If you think about gravity and that helping pull the blood down – but also hindering with it’s return up. Makes sense that being horizontal helps with the blood flow. Less gravity and less effort on the heart to pump it up to our hearts and brains.

      Issie

      • Katie Down
        Nov 06 - 4:11 pm

        Hi Issie (nice name, btw, same as my little niece!)

        Thanks so much for your reply. And sorry you have POTS as well as ME/CFS (I presume!). I have had POTS diagnosed provisionally based on sitting, standing B/P and pulse. But as I am too ill to leave the house, and therefore can’t have tilt table etc they won’t officially diagnose and def won’t treat me for it, sadly!

        I do get the shakes occasionally but the pounding of my heart definitely isn’t tremors (though good suggestion, that would make sense!). I think I ‘just’ have an insanely strong pulse – for whatever reason, it makes rest and sleep even harder than it already is – and notice it in my heart, but also the pulse just around the diaphragm (spelling?!) above my stomach. Weird!!

        Fascinating what your doctor says about lying on your sides (may have to do some googling to decipher the meaning of biofilms and protozoa!! I was a social scientist before I became ill and not very ‘up’ on biology I’m ashamed to say!). Your doc does sound v well informed. Are you in the UK? I’m suspecting not as most ME/CFS specialists not so good at explaining our crazy symptoms in my experience ;)

        Thanks again and best wishes, Katie.

        PS. What is MCAS?! Have googled it and none of the suggestions make sense in this context.. Maybe Multiple Chemical ???Something! Sensitivities?!

        • Issie
          Nov 06 - 6:12 pm

          Lots of the treatments for POTS are trial and error, so even if you were getting “treated for it”, it would still be a try this and see sort of thing. Sorry you are so sick that you can’t have your TTT (tilt table test), to have a definitive answer. But, even if you had the official label – still much is unknown.

          MCAS is Mast Cell Activation Syndrome.

          I’m not in the UK – in the US in the wonderful state of Arizona. I live close to the Mayo Clinic and that’s where I got most of my DX’s. However, the doc I’m working the closest with is Dr. Stephan Fry who is the doc that discovered this protozoa and is treating me for that. The treatment for that (diet, low dose antibiotic, antimalarial herbs, enzymes) are what is seeming to help my POTS the most. I do however, also feel that my treatment of the MCAS is one of my key helps too. When I added GastroCrom to my meds – things really started improving. My POTS doc is who gave that to me. He is at Mayo and his name is Dr. Brent Goodman and he is a neurologist. He is working closely with the autoimmune doc there on my behalf. I have a lot of doctors and have lots of discoveries. But, these are the two things that I think have made the most differences for me.

          You will learn a lot about the body and its functions the more you search and study. The body is so fascinating and so complex. It intrigues me!

          Issie

  19. Katie Down
    Nov 09 - 11:52 am

    Hi again Issie,
    Thanks Issie for another great reply.
    I shall print out this whole article and your replies and look into it all when I have more brain function ;)
    I do hope my questions weren’t too dumb! (Esp the MCAS one!)
    And thanks for sharing what is working for you. Sounds as if you have some good medics investigating your illness(es) which is surely a positive.
    Appreciate the reassurance that I’m not necessarily missing out on a great deal but not having TTT. I often feel it is very hard being house/bed-bound and not even able to use internet or research much, but then I know treating this crazy illness is very hit and miss anyway even if one can access treatments…
    Sorry I hope all this typing, thinking and sharing don’t make you more ill as they do for me.
    Take good care and thanks again. Best, Katie x

    • Issie
      Nov 09 - 4:41 pm

      You’re welcome Katie. I enjoy trying to help others. Just hope something I say will put some piece of someone’s puzzle together and it will give them a direction.

      It takes time to understand what everything is, what it means and how it applies. So be patient with yourself. It will start to come together for you. Any step in the right direction of understanding and knowledge brings with it power and solitude. The fear of the unknown is so much worse than the understanding of the known.

      Issie

  20. […] Rising recently had a nice article published on Nov 1, 2013 on the research of Dr.Visser on this common symptoms of CFS patients. Later in the month there was also a […]

  21. Mandy
    Jan 09 - 4:11 pm

    Just came across this site through a search, so I am late to this conversation. Thanks so much for all the information. So many things made me feel relieved I am not alone. 14 years cfs, varying symptoms and abilities. Palpitations a constant, worsening at times to debilitating runs of ectopic beats seem to be triggered by food. That’s where I’m at now, waiting for it to stop, wondering if I should go and have (another) ecg. Supportive Dr but has no answers or understanding. Thank you all for making me feel less alone with what is such an isolating illness .

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