Cyclic vomiting syndrome (CVS) is classified in the medical literature as a “functional” disorder, characterized by stereotypical episodes of intense vomiting separated by weeks to months of wellness. Although it can occur at any age, the most common age of presentation is between three and seven years. There is no gender prominence. The precise pathophysiology is not known but there is a strong association with migraine headaches that affect the patient as well as the patient’s mother, indicating that it may represent a mitochondrial disease. I will explain this association later in the post. These authors have used the word functional appropriately since they indicate the role of mitochondria and report that studies have suggested that an underlying autonomic neuropathy involving the sympathetic nervous system (part of the automatic nervous system) is at fault.
What is a Functional Disorder?
The word “functional” is often used as being virtually synonymous with “psychological” in describing a disease entity. So describing CVS as “functional”, suggests that it is generally regarded as having a psychological background. Indeed, my perusal of the CVS medical literature indicates that the only treatment to try to prevent recurrent episodes is the use of antidepressant drugs. It is as though the act of repeated vomiting is thought of as a process by which the patient is reacting to a state of depression. I have long tried to understand how this term could be used with such a lack of thought concerning the underlying mechanisms. The point that I am trying to make here is that whether we like to recognize it or not, the human brain is a machine that relies on chemistry that is used to supply energy. Therefore, the only proper use of the word “functional” is to describe a change in function due to abnormal structural or electrochemical action.
Mitochondria are literally the “engines” that provide each of our cells with the energy that enables them to function. They have their own genes, inherited only from the mother, and that is why Kaul and Kaul mention the association of migraine headaches in the patient as well as the mother. The autonomic nervous system is controlled automatically by the lower part of the brain and is not a thought process. It provides us with the machinery whereby energy is converted into both physical and mental action. In addition to all this, we have to remember that the genes in the mitochondria, like our cellular genes, also can have mistakes in their construction. Therefore, a breakdown in function has either a genetic background that can be either a defect in the cellular genes, inherited from both parents, or the mitochondrial genes inherited from the mother. The only thing that we can do is either replace the faulty gene (the current attempted approach) or provide the ideal fuel (nutrients) which enables mitochondria to generate the necessary energy.
It is worth noting here that when each one of us is faced with a mental or physical stress (including infections) a surge of energy is required to meet that stress and possibly explains why a given infectious agent has no deleterious effect on one individual, whereas another succumbs to the disease. Can the state of nutrition be that important? My answer is, yes undoubtedly. So let us see if there are other published statements in the medical literature that might support such an answer to the underlying mechanisms of CVS.
Cyclic Vomiting and the Autonomic System
Several cases of CVS are described in chapter 5 of our new book, Lonsdale D, Marrs C. “Thiamine Deficiency Disease, Dysautonomia and High Calorie Malnutrition”, all of whom responded to supplementary thiamine. I scanned the CVS medical literature to see what else has been written to make this connection. I found a manuscript describing the case of a 29-year-old woman with type I diabetes from 10 years of age who developed adult CVS. Beginning at the age of 25 years she was frequently hospitalized for what was described as “stress-induced vomiting” implying a psychological background. Diabetes has been found to be potentially therapeutically related to thiamine supplementation, suggesting that the CVS was thiamine related. I discovered a manuscript reporting a 27-year-old pregnant woman with CVS at the 12th week of gestation. The vomiting was treated symptomatically with a drug that suppresses autonomic nervous system activity.
The book by Lonsdale and Marrs describes how the autonomic nervous system becomes deranged with thiamine deficiency. That is why the word “Dysautonomia” appears in the title. John B Irwin’s book: The Natural Way to a Trouble-Free Pregnancy: The Toxemia/Thiamine connection describes his dramatic experience with the use of supplementary thiamine in pregnancy. This is a book that should be obtained by anyone even contemplating pregnancy.
Lastly, CVS has been described in association with a genetically determined form of autonomic dysfunction. Thiamine deficiency during pregnancy is devastating to the fetus as well as the mother. There is reason to believe that a legacy from this continues in the newborn infant who survives at a marginal asymptomatic level, perhaps succumbing to CVS between the ages of three and seven years because of some unidentified trigger. We know from history that thiamine deficiency can fluctuate, providing what is well-recognized as a prolonged morbidity. The lower part of the brain, highly sensitive to even a mild depreciation in energy metabolism, contains a “vomiting center”, stimulation of which will cause vomiting. Thiamine deficiency is probably the commonest cause of defective energy metabolism, thus providing the stimulation.
Points of Consideration
CVS is a surprisingly common condition and readers of this post are likely to have at least known of a case, if not experiencing it in one of their children. The first impact from this post would naturally be skepticism, since it connects thiamine metabolism to three different states of health, including pregnancy. Skepticism would stem from current acceptance that each disease is a separate entity requiring a specific drug that has to be found as the cure. To read Irwin’s book is an absolute eye-opener in our attitude towards a healthy pregnancy. To find that migraine and CVS might be connected because of dysfunction in a nervous system, about which many of us have total ignorance, is jolting.
The evidence is mounting that disease is a result of a failure to meet the energy demands of the brain/body and that it often starts with everyday symptoms that are disregarded as psychological. I have used the analogy that the body is like an orchestra. The brain is the conductor of the orchestra and perhaps the leader of the orchestra is thiamine. The leader enables an orchestra to come together in unison under the baton of the conductor. It is unthinkable that the conductor of an orchestra would be able to function if he was himself sick. Beethoven, in his deafness, could not conduct the orchestra in the opening performance of his ninth Symphony and the orchestra was told to ignore Beethoven and perform according to the baton of an assistant. Perhaps the same would apply if the all-important leader were sick or missing.
Every cell within an organ, like an instrumentalist in an orchestra, has a specific function and “to and fro” communication with the brain is essential to the orchestration of function. Genetically determined structure of cells or their mitochondria may or may not be 100% normal, but no function is possible without the energy derived from “burning the right fuel”.
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This article was published originally November 15, 2017.
There are some clues here. First, let me state that vomiting, bloating and abdominal pain are classical symptoms of beriberi. Raynaud’s disease is one of the dysautonomia syndromes from sympathetic dominance and may respond to thiamine. I would guess that he should be taking thiamine (in suffcicient dose) + magnesium + a multivitamin and get rid of everything else.
Oh WOW. I never even thought about the fact that the amitriptyline could be depleting his thiamine. Is that true for all tricyclic antidepressants? I can’t tell you how thankful I am you have responded to my comment. I apologize for not seeing your other response. I will go search for it.
My husband has been carnivore since April 2018, but in September 2018, he got a two week long episode. It just wouldn’t relent. Almost lost his job then. That’s when I discovered Dr. Boles’ work from some CVS groups on Facebook. At the end of Sept, he was on 1 gram twice daily of Carnitor (l-carnitine; total 2 g), 300 mg twice daily of coq10 (total 600 mg), and a B-100 vitamin. Later introduced B2, 100 mg in the morning (because he was already taking 100 mg in the B-100 tablet in the morning), and 200 mg at night. Waited for over a month for it to help, but a new doctor suggested amitriptyline, 10-20 mg. He got the prescription and sat on it for a while. Then decided to get it, I think in October. He had continued to get random episodes, and even started having fits of crying. So he started the ami in response. Ended up gaining some weight, and when he titrated up past the 50 mg, the Raynaud’s started. Dr Boles actually recommends 1-2 mg per kg of weight (husband was 250, now 270-280; carnivore initially brought him down from 330, and reversed his prediabetes, so he is technically way under a “therapeutic dose.” We don’t have any doctors to work with except for essentially walk-in clinics, and me researching stuff and presenting them with the info.
He is not taking other medications, except for Gaviscon when needed. He was on PPI’s years ago, but stopped them around the time he was diagnosed with Celiac Disease (2014, I think?). His heartburn has been really bad lately.
He is also taking 200 mg selenium in the morning, as well as 1200 mcg B12.
Other weird symptoms he’s had for years is swollen tendons and/or joints (asymmetrical; a wrist, fingers, knee, ankle, foot) with a red spot over them, and some doctors insist it’s gout (he did a couple of times get the super painful big toe symptoms). He has right-beating nystagmus randomly (he said the whole room will spin), and may or may not get migraines with his vomiting episodes. Was told years ago he has “IBS,” will sometimes have shaky tremor hands.
I will stop the potassium. The reason I started giving it (maybe a few weeks ago), is someone suggested it because he wasn’t getting better (nor worse) on the allithiamine, and that’s when I also upped the allithiamine to 150 mg before switching to lipothiamine last week.
I guess with the amitriptyline, the fear is that coming off of it (slowly, of course… maybe cut down 10 mg a week?) will suddenly bring back his episodes. They seem to be less often than before the amitriptyline. I want to be confident that the lipothiamine will help him, but I am afraid.
His chemistry is a mess. I hope Dr. Lonsdale sees this, as he has much more experience than I, but a few more things that strike me as problematic, the high doses of selenium and b12. The high dose selenium can cause nausea a vomiting, ditto for the B12. With the B12 in particular, since he deficient in thiamine (nystagmus), it is not likely he is able to use the B12 effectively. As I mentioned, the amitriptyline depletes thiamine (blocks one of the transporters). As a aside, all medications damage the mitochondria by one mechanism or another. Sometimes they block nutrient transporters and other times they simply override other functions that then necessitate higher doses of thiamine and other nutrients. The problem is, without thiamine, supplementing with the other nutrients is not entirely effective. Thiamine is the driver. So, in your husband’s case, he likely has had long standing thiamine deficiency, based upon previous diet (pre-carnivore and weight loss), the poor absorption relative to celiac’s disease, and certainly exacerbated by the CVS. It is possible that the thiamine deficiency is responsible for the CVS or it could be simply a result of it. Regardless, it is key to returning his health. Withdrawing from amitriptyline, like any drug, has to be gradual. The withdrawal also causes nausea and vomiting. Withdrawal from potassium has to be gradual as well because one can flip from hyper – to hypokalemia if one is not careful. Selenium, I am not sure about how one withdraws. As far as allithiamine versus lipothiamine, if he does better on allithiamine, use that one. They both have the same amount of TTFD, but lipothiamine contains some alpha-lipoic acid. It is possible that he is reacting to that. As far as not improving on the allithiamine – the amitriptilyne is a contributing factor, but also, remember, it will take time to unwind. It is possible the dose neither the dose nor the time allotted for improvement was sufficient. For longstanding deficiencies, such as his, often much higher dosages are required over an extended period of time. However, like everything else, one has to be thoughtful about titrating up. It has to be done gradually. It would be a good idea for you to keep a journal and establish some sort of tracking system for symptoms and supplements. You need to see how everything interacts. It is entirely possible that he was beginning to improve a bit on the allithiamine, but because there is so much going on, it was difficult to notice. Tracking helps this.
Typo. Sorry. Selenium is 200 mcg. Not mg. And B12 is because he was low when tested.
I figured that, but it still high.
Oh ya. I left out something very important when you asked if he’s on other medications. I apologize. He vapes cannabis nearly every day to deal with his symptoms. He never used to. He had CVS even before cannabis use. But he hasn’t needed to go to the ER since he started with cannabis use in 2015. It used to be occasional, but now he treats everything with it, because it helps him feel better. He uses it usually in the evening when he gets home from work (he doesn’t before he drives to work or anything). I understand the relationship between CVS and cannabis (and know about CHS), and I told him that cannabis can temporarily make him feel better, but it may make CVS worse in the long run. It does help significantly when he gets an episode. Otherwise he’ll just vomit and vomit.
That is the problem. He is treating symptoms rather than causes and in the meantime, his thiamine deficiency, which is likely at the root of much of this, is progressing.
Yes, I agree. Weed just treats the symptoms. He finally had a call with a neurologist today (never talked to one before and had gotten the referral before learning about thiamine deficiency) and is on a plan to wean off the amitriptyline. Neurologist agrees that amitriptyline causes bad side effects. But wants put him on topiramax instead when he’s off amitriptyline. Yikes! I read all about it on this website, by Angela Stanton. Seems like a disaster waiting to happen (also read the warning about taking it while on a ketogenic diet). I’m going to encourage him *not* to fill the prescription. I also took away his selenium and extra B12, and cut down on the potassium to wean him off slowly. So he will stick to the mito cocktail (coq10, l-carnitine, b-100, b2), lipothiamine, and magnesium.
Thank you again so much for your help. I so badly want my husband to feel better. We got married when I was 18 and he was 25, and have been married for almost 16 years now. He has been “sickly” since he was a child, but was relatively “ok” in his younger years. But the last decade I have watched him progressively deteriorate. He’s still so young, even at 41, and we have three young children (10, 8, 4). Again, I am so thankful for all the work that you and Dr. Lonsdale are doing. I am hopeful that the thiamine will help him. FINALLY. I guess we just need to find how much he needs to get better. But I am hopeful now that we will get there.
I’ve been doing more reading, and now I’m wondering if perhaps the fact that we have very high manganese in our water is exacerbating things. I read that high amounts of manganese can quickly deplete thiamine in rats, and there were some studies that showed that some people experienced neurological problems from drinking water with high manganese. It is 1.9 mg/L, when the limit her here is 0.12 (or 0.05 in other areas). We have been drinking this water for over 4 years now. Previously, at our old place, the water wasn’t drinkable, so we drank from our Berkey. I’m wondering now if I should be doing the same here.
I believe my husband has CVS. For at least a decade. Maybe more. Doctors have proved unhelpful. I have commented elsewhere on this site, but he started 100 mg allithiamine at the beginning of May (increased to 150 mg for a couple of weeks now), and it seemed like it didn’t do very much. Since the fall of 2019, he has been on the “mitochondrial cocktail” as recommended by Dr. Richard Boles (what we read; not that we consulted with him). He also started amitriptyline, and worked his way up to 75 mg, and has been on that for the last couple of months. But it also seemed like when he got over 50 mg, he suddenly started experiencing Raynaud’s-like symptoms (cold, numb fingers and toes, cold nose), and tingling arms and legs. He never had those symptoms before amitriptyline.
Then last week, lipothiamine finally came in the mail (we’re in Canada), and now he takes 150 mg of that (also 300 mg magnesium and 198 potassium; has been for a while of that too). Then he vomited Thursday morning (hadn’t vomited for several weeks), and had unrelenting faintness since then. Tunnel vision sometimes. Or the feeling of impending doom. Plus the cold/numb fingers, toes, and nose.
I am not sure if it’s paradox (because of lipothiamine being absorbed better?), side effects of amitriptyline, or both. I know that amitriptyline just masks symptoms of CVS and doesn’t actually deal with them. But should he continue with the amitriptyline, or switch to something else (like nortriptyline?) or wean off of it and continue with the thiamine treatment? Or increase the thiamine treatment? The plan originally was to continue to take TTFD of some sort until he felt better, but I’m not so sure if amitriptyline is holding him back and the side effects making him feel worse.
He hasn’t been to work since last Wednesday, and doesn’t want to lose his job. I wish we had a doctor to consult. He attempted to talk to a doctor during a virtual visit today to see if maybe he could try switching to nortriptyline, but she wouldn’t listen and insisted that he “has a bug,” and that the faintness was his 3-4 times a day diarrhea causing dehydration.
The amitriptyline depletes thiamine -significantly (I responded to your other comment with the research link), as does the vomiting, so we can assume that he is thiamine deficient. If I recall, Dr. Boles used l-carnitine and coQ10 to treat CVS? Is that still the case? Had that not worked? How long and how much had he been using those? Are there other medications that he is using for the CVS or other conditions?
With the thiamine supplementation, potassium will become re-regulated. With concurrent potassium supplementation comes a risk of hyperkalemia, which will induce muscle weakness and nausea among other symptoms. Dehydration also contributes to elevated potassium.