Thursday, March 5, 2009

My pounding heart

My heart pounds, blub blum blub blum, as I lie in bed with closed eyes. A few minutes ago it seemed normal, quietly doing its job while I went about mine. Now its beat is loud, annoying, demanding, incessant. Listen to me, listen to me. I get out of bed.

Almost everyone I know with CFS deals with this pounding heart, and none of our doctors have any idea what is causing it. Nor do they know how to stop it. I’ve noticed over the years the things that often ameliorate it:

• doing yoga inversions, especially supported shoulderstand.
• doing a few vigorous yoga poses, like upward facing bow (a backbend – not recommended for beginners) that open the hips and the chest
• eating plain yogurt or goat cheese

This weekend I clicked on the link to a website written by a cardiologist who has been familiarizing himself with Dr. Yasko’s research on methylation defects in chronic and understands how to explain it. In reading over Dr James Roberts discussion of methyl cycle genomics in heart disease, I suddenly had an aha! moment. I understood how my own methylation genetics have created Pounding Heart at Rest.

Over the last few days I’ve been working to wrap my mind around these ideas. Here’s what I’ve come up with.

A pounding heart is a normal reaction to vigorous activity such as running. The demand (stress) of movement stimulates the SNS [sympathetic nervous system] to release adrenaline and noradrenaline (or if you prefer the British terms, epinephrine and norepinephrine) as well as the hormone cortisol. When the activity stops, the heart rate slows and soon returns to normal as the PNS [parasympathetic nervous system] brings the body back to homeostasis.

Certain methylation cycle defects lead to excess stimulatory activity and insufficient inhibitory recovery, and I have just about all of them. The main culprit is CBS – not the television station (even though watching TV late at night is rather stimulatory) -- but an enzyme known by that name whose job is to funnel metabolites of the methylation cycle out of the system. Meet Cystathionine Beta Synthase, a hardworking supporter whose job is to funnel homocysteine into cystathione so that the next enzyme can make cysteine and alpha keto glutarate (AKG) both of which are used for other important things. My CBS is overly enthusiastic due to a certain genetic variant known as a SNP or polymorphism. This simply means that one of the normal amino acids on the gene has been replaced by a different one, and this can happen in all of the genes if you are (CBS +/+) or half of the genes if you are (CBS +/-). I happen to have the latter variant, half of my genes. I also have other variations further upstream that intensify the imbalance.

Imagine CBS as a worker on an assembly line. If she does her job five or ten times faster than everyone else, a bottleneck will develop and then trouble will result. The enzyme that is supposed to pick up some homocysteine for recyling before CBS grabs it must also works overtime. Unfortunately, this enzyme, called BHMT, has just the opposite genetic variant in my body: it works more slowly. The net result is that my enthusiastic CBS makes lots more cystathionine than it should.

This has multiple effects. Upstream, there is not enough homocysteine getting recycled back into methionine so that it can be used to make SAMe which can then be used to make DNA, RNA, protein, lipids, creatine and creatinine. Hence, on lab tests, homocysteine, methionine, SAME, and creatinine are low, and I crave red meat whenever I try vegetarian diets.

But the downstream effects are worse, many times worse. Here’s what Dr. Roberts has to say:
The 10-fold up regulation in CBS generates sulfur breakdown products (sulfite and sulfate, which stimulate the stress/cortisol “fight or flight” response), excess ammonia (in the process wasting BH4 which is used up detoxifying ammonia), hydrogen sulfide (producing “brain fog”), and alpha-keto glutarate (leading to “excitotoxicity”). The G6PDH enzyme system may be affected, leading to abnormalities in sugar control. Methylation intermediates will “fall through this drain”, so the entire system suffers; our defenses against viral invasion and toxicity suffer. Co-Q10 and Carnitine generation will fall off due to impaired methylation, and ATP levels fall, robbing you of energy.

If this is all you want to know, skip to the end. If you want more details, read on:

1. The excess cystathionine is converted to cysteine and alpha keto glutarate (AKG). AKG is excitatory; when there is too much, the inhibitory GABA (the receptors that Valium binds) can’t operate properly to balance the excitation.

2. If this weren’t enough trouble, a byproduct of the conversion is ammonia – that stinky stuff used in oven cleaner, Phew!, toxic even in small amounts.

3. Of course the body has ways to detoxify ammonia. But in doing so, it uses up a very important enzyme known as BH4. BH4 makes non-toxic byproducts from ammonia and arginine, and helps us make the important feel-good neurotransmitters dopamine and serotonin. When BH4 stores are low, instead of getting non-toxic byproducts, we get lots of free radicals (peroxynitrite and superoxide) that go about damaging cell membranes until they are neutralized by anti-oxidants. And mood disorders can result because there isn’t enough BH4 to make all the right amounts of feel-good neurotransitters.

4. The excess cysteine gets converted to taurine rather than to glutathione. The lack of glutathione impacts the function of the immune system and lowers the ability of the body to detoxify heavy metals.

5. The abundance of taurine is less problematic, for taurine has lots of good uses in the body. It is important in the visual pathways, for the brain and nervous system, and for cardiac function. It facilitates the passage of sodium and potassium ions into and out of cells, electrically stabilizes the cell membranes, and functions as an inhibitory (calming) neurotransmitter. It conjugates bile acids for efficent fat absorption & solubilization. Not bad for one amino acid.

6. A byproduct of the conversion to cysteine and taurine is hydrogen sulfite, also known as the brain fog molecule, the one responsible for the foul smell of farts and cooked hard-boiled eggs. Here’s what a Wikipedia article says about the toxicity of hydrogen sulfide (H2S)
a broad-spectrum poison ... although the nervous system is most affected...which forms a complex bond with iron in the mitochondrial cytochrome enzymes, thereby blocking oxygen from binding and stopping cellular respiration. Since hydrogen sulfide occurs naturally in the environment and the gut, enzymes exist in the body capable of detoxifying it by oxidation to (harmless) sulfate.

HBOT (hyperbaric oxygen therapy) is particularly efficient in helping remove toxic hydrogen sulfide, which is why most people with CFS have a positive response to this therapy, but also why it doesn’t last: we have not been poisoned by breathing exogenous H2S but rather by our own excessive production of it.

In the body, H2S acts as a vasodilator (which can explain the prevalence of orthostatic intolerance in people with excessive H2S production) and in the brain increases the response of the NMDA receptor (which Martin Pall has shown is responsible for chemical hypersensitivity in those of us with CFS and MCS.)

7. And if all this isn’t enough, we get lots of neurotoxic sulfite, which overwhelms the SUOX enzyme that uses molybdenum to convert it into the less toxic sulfate.

8. Even if we support the SUOX enzyme into converting sulfite to sulfate, we have an abundance of sulfate, which stimulates the fight, flight, freeze response. We produce SNS neurotransmitters adrenaline and noradrenaline as well as cortisol, until the adrenals get too exhausted to produce high amounts of cortisol. All these stress hormones lead to a pounding heart.

Do you have sensitivity to sulphur products: sulpha-drugs, foods high in sulfur, or sulfites added to wine and dried fruits? Leave a comment below.


  1. Hi Janis...

    In 1984 I was admitted to hospital with a congenital toxoplasmosis flare up near my optic nerve which was threatening my eyesight. The first treatment tried was sulfonamide drugs which I reacted badly to. After that they used another drug (Pyremethamine - a folic acid antagonist), which although it was successful left me completely "wiped out". I had always identified the use of this drug over a number of weeks as the start point of my CFS but I had the sufonamide reaction immediately before that.

    It was when looking into the possible side effects of this drug on the www. 14 years later (in 1998) that lead me to write the terms sulfation, folate, methylation and sam-e down in my notebook. Putting all those together in a search engine led me to CFSMExperimental, and Rich's work a few years later.

    I'm really keen to see how you get on with this protocol. I've bookmarked you as a favourite and I'll be cheering you on from the other side of the world :)


  2. Thanks so much Anne! I love good cheers, and send you similar blessings for a speedy recovery.

  3. Very interesting reading.

    Two other things that may be worth checking out - which correlated with my heart pounding feelings in early stages:

    1) Hyperventilation syndrome - I have to be very careful to balance Yoga with Buteyko Breathing, otherwise I tend to overbreathe. (I'm a slow, relaxed breather, but I can easily hyperinflate without realising - sometimes I notice I yawn or sigh a lot.) Chronic overbreathing depletes magnesium and causes intercellular acidosis, and all sorts of other things!

    2) Hiatal hernia - there's an interesting book called Hiatal Hernia Syndrome, by Theodore Baroody. I don't think it's got much support in the mainstream, but the symptoms of a sliding hiatal hernia correlate with MANY of my symptoms. I'm hardly overweight either, but hiatal hernia can be caused by chronic stress.
    I noticed my pounding heart seemed to come lying down, often after certain foods, and often after certain viruses.
    Lying down, the stomach can easily slide up, crowd the heart space, and cause that heart pounding sensation. Can also excite the vagus nerve and cause skipped beats and tachycardia, and sometimes restrict the breathing a bit.
    I've not heard many CFS researchers looking into this yet, but I suspect it may be very common.

    Certain yoga poses help pull the stomach down a LOT. Interestingly, upward facing bow's one of the best. Whereas down dog and shoulder stands are usually not recommended.

  4. Great article -- I have pounding heart at times, generally associated with eating spicy foods. A really awkward problem that I experience is when having food/drink with sulphite preservatives – beer, wine, apple- cider, sausages, etc causes a sewer like smell coming from my breath. This could be related to your findings. I’d appreciate any advice to help nullify this ... Ta

  5. I have pounding heart all the time, what could it be? It pounds harder after a meal or when lying down, I did a breathe test and tested positive , could it be related? I'm positive i don't have anxiety or stress like the doctors say. I did a stress test and all seemed normal.

    1. Have you figured out how to resolve it? I'm 43 and have it 24/7.

  6. very well explained, thank you! I have Parkinson's but genomic testing has uncovered my own polymorphisms. I too have had your heart symptoms. I am about to embark upon the protocol to deal with the CBS +/- upregulation, because I believe that the methylation cycle blocks are part of my problem....

  7. I have CFIDS and experience the pounding heart symptom quite often.

    1. Drinking cold water with minerals / electrolytes helps make it go away...prescribed to me by the University of Miami CFIDS center.

  8. I just found this site this morning. Very intersting information. But I don't see any information on what to do to help this problem. Such as diet, exercise,etc. Where do I find that??

  9. Please read it again. I state that I found yoga poses of certain types helpful, and I also found information about what to do on a doctor's website.

    What has helped me most, in the past 2 years, has been getting away from mold. If you read the posts from 2011 you will see how I discovered mold was a catalyst for my CFS symptoms and how leaving my house and belongings to live in a tent in the desert reduced or eliminated many of my symptoms.

  10. Very new to this topic... do you think the CFS is due to Adrenal Fatigue? I have been diagnosed with Adrenal Fatigue - have had several very stressful situations in my life. A few years ago I started taking Vitamin B100 Complex and DHEA for the Adrenal Fatigue - seemed to work. Prior to that, I had "brain fog" terribly, tired all day - wide awake late at night, not sleeping well. But then i also yawn a lot to catch my breath, and I have hard heart beating every once in while - but have for as long as I can remember. Feels like my heart is spasming.

    So -- do you think CFS and Adrenal Fatigue are related?

  11. Marsha Reimbold, there is an extensive literature on CFS and HPA axis issues. H - hypothalamus, P = pituitary A = adrenals. Mainstream researchers haven't found a connection with the adrenal glands but they know the regulation of this feedback cycle is off in everyone, although some make too much adrenal hormones, some too little, some erratically pingponging between high and low. This pattern is typical of neuro-endocrine immune diseases where toxins and genetics come together to create dysfunctional detox pathways in the body and affect the functioning of neural, immune, and endocrine systems. Adrenal support can help people feel better. It certainly doesn't hurt to support it with diet and certain natural products, but taking adrenal hormones can backfire after awhile. B vitamins help support methylation and the citric acid cycle in the mitochondria. People with CFS usually need this support, but not all can tolerate its effects.

  12. It is very interesting to note that Amy Yasko's site talks about trouble with sulfur for some people causing a cortisol stress reaction. It is worth googling a little bit. I also notice that sometimes I get a weird feeling like I've just finished a big cry when I haven't and this is apparently attributed to the vagus nerve - this nerve is also involved in the methylation process Dr. Yasko studies/specializes in. I am interested in hearing others' comments on this. Thanks for writing your findings!

  13. Interesting. I have ME/CFS and CBS +/-. I've just woken with pounding heart (and also high mental clarity/racing mind/very cold chest, despite good warmth in rest of body/strong urine sulphur smell). This is a fairly common symptom for me, and being wide awake & having had my SNPs done recently - I'm looking at Yasko's Methylation Pathway diagram and trying to fit this symptom in. A search on "cortisol H2S" found your blog.

    I have read elsewhere that cortisol is needed to regulate night-time hypoglycaemia, and wondered if that might be a factor with adrenal fatigue so common in ME/CFS.

    What is interesting is that I've just gone back on glutathione (GSH) after a trial period without (I feel better with) and had a larger dose yesterday. I also have NAC (which maybe I'm not converting so well, or I wouldn't need GSH supplements). My working theory (as of 15 mins ago!) is that in the presence of adequate GSH, the excess cysteine in being turned into H2S in making cystathionine. Causing the issues you have documented.

    As well as CBS +/-, I am CTH S4031l (rs1021737) +/+. I'm still reading up on this, but it appears to bottleneck transulfuration after cystathionine (causing excess of it), and this is after the floodgates have been opened by CBS.

    I also have the Pathway Planner diagram which shows cystathionine being made using serine and/or cysteine. Serine producing H2O and cysteine producing H2S. I wonder if taking more serine and less cysteine would encourage cystathionine to be produced with water as a byproduct and not H2S?

    One thing re your point 1. I understand that Yasko made a transcription error re AKG, and has since corrected. It should be alpha-keto butyrate. I have seen several sources that have got their info from Yasko but have not corrected it, and I wonder if that it is the case here.

    Now to try and get some sleep! Better health.

  14. Thanks for sharing! It was very honest and I respect that because there are so many lies everywhere


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