SUPPLEMENTS AND HERBS IN THE TREATMENT OF ERYTHROMELALGIA
Erythromelalgia (EM) is a disorder of the neurovascular system, that is, of the mechanisms controlling the activity of nerves and blood vessels. These neurovascular abnormalities typically affect the skin in the feet and legs, sometimes the hands and arms, and occasionally the ears, nose or other areas.
EM has many similarities to migraine disorder, and both disorders can be reactive to a wide range of substances. In migraine, such substances are called triggers. Triggers in EM are usually substances that cause vasodilation, that is, the opening of blood vessels, causing redness, heat and burning pain.
VARIATION IN EM RESPONSE
Vasodilators are substances that cause blood vessels to open. Such substances can be helpful in the treatment of hypertension (high blood pressure), because by opening blood vessels, the pressure within the vascular system drops. These same substances can make EM worse.
Like migraine, EM is a multifactorial disorder, meaning that different people may have different underlying abnormalities in the neurovascular network. This explains why people with EM may respond so differently to the same supplements or medications. Some respond beautifully to magnesium, while others worsen. Some respond well to Cymbalta (duloxetine), yet others see no improvement at all. The medical journals offer a dozen cases of major improvement with Effexor (venlafaxine), yet many others obtain no improvement or worsen, as I did.
Omega 3 fatty acids, contained in fish oils or flax oil, promote cardiovascular health in most people. Taking one capsule (1,000 mg of fish oil) does not usually affect people with EM, yet they clearly cause vasodilation and pain in me.
SUPPLEMENTS THAT CAN WORSEN EM
The following substances are known to cause vasodilation, which can make EM worse. In my article “What Is Erythromelalgia,” I explain that EM has many similarities to migraine disorder. Both are caused by erratic behavior of the neurovascular system (nerves and blood vessels), and both have many, many triggers. If you decide to use one of the substances below for health reasons, do so carefully, starting with a low dose. If you are already on one of them, consider reducing or discontinuing it to see if it improves your EM. Allow at least two weeks for the substance to clear your system.
Arginine
Bioflavinoids
Lycopene
Borage Oil
Magnesium
Carnitine
N-Acetylcysteine
Coenzyme Q10
Selenium
Evening Primrose Oil
Taurine
Fish Oil
Vitamin B3 (Niacin)
Flax Oil
Vitamin B12
Garlic
Vitamin E
GLA (Gamma Linolenic Acid)
Zinc
Comments on some of these supplements:
Amino Acids: Arginine, Taurine Both arginine and taurine increase levels of nitric oxide in blood vessel cells. Nitric oxide is the primary substance in the vascular system that produces vasodilation.
Bioflavinoids More than 4,000 naturally occurring flavonoids have been identified in nature. They are potent antioxidants and free radical scavenges. Although studies are few, it appears that bioflavinoids can modestly reduce blood pressure, meaning they may cause vasodilation.
Coenzyme Q10 This potent antioxidant has many uses in the human body. Alternative doctors frequently recommend coenzyme Q10 to offset the side effects of cholesterol-lowering drugs such as Lipitor (atorvastatin) and Zocor. Because levels of coenzyme Q10 gradually drop with age, the supplement is also frequently recommended for maintaining cardiovascular health. Studies show that coenzyme Q10 can also reduce blood pressure.
Fish Oil & Flax Oil Capsules Fish oil and flax oil are high in omega-3 fatty acids. Both supplements increase the level of prostaglandins in cells. Prostaglandins are potent vasodilators.
Gamma Linolenic Acid: GLA, Evening Primrose, Borage Oils All have been shown to reduce blood pressure, which means it widens blood vessels. This can worsen EM.
Garlic Garlic is well known to open blood vessels. This is why alternative doctors frequently use it as one of the natural therapies for treating high blood pressure. Any substance that opens blood vessels usually worsens the symptoms of EM.
5HTP A derivative of tryptophan, 5 HTP causes the body to produce serotonin. If you benefit from medications such as Cymbalta, Effexor, Prozac, Zoloft or other SSRIs or SNRIs, then 5 HTP should help you as well. If 5 HTP causes worsening, as it did for me, then serotonin antagonists may help you (see feverfew, white willow below).
Lycopene Lycopene is found in tomatoes, grapefruit, watermelon and papaya. Studies have proven that lycopene can reduce blood pressure, meaning it widens blood vessels. A small amount is probably okay.
Minerals: Zinc, Selenium Zinc and selenium are sometimes recommended by alternative doctors for hypertension. Both supplements worsened my EM.
N-Acetylcysteine (NAC) A potent antioxidant and free radical scavenger, NAC increases levels of nitric oxide, the primary vasodilator in vascular cells.
Niacin Niacin is a potent vasodilator, so potent that niacin preparations can cause skin flushing from dilation of blood vessels. Prescription niacin preparations often do the same. Even in small doses in multivitamin pills, niacin may cause vasodilation in EM. Some multivitamin preparations contain niacinamide, a less potent derivative of niacin, yet niacinamide may still be a problem for some with EM.
DO ANY SUPPLEMENTS HELP EM?
Phosphatidylcholine (PC) I cannot remember why I tried this supplement, but I began using it around 2003. It remains one of my mainstays. PC is a key factor in every cell of the body, especially nerve cells. Why it helps my EM, I do not know, but it helps it a lot. I use a specific brand from BodyBio (bodybio.com). A similar product is available at MillerPharmacal.com. These products are very different than the soy based PC made by other companies.
Alpha Lipoic Acid (ALA) This supplement has been used for decades in Europe and now in America for neuropathies, the type of nerve injuries seen in diabetes. Because neuropathies are the underlying problem in most cases of EM, ALA can be beneficial for many of us. ALA is one of my main supplements. I have used it for ten years. Anyone helped by magnesium are likely to benefit from alpha lipoic acid. If magnesium makes you worse, use ALA carefully. Yet because ALA has other healthful properties for nerves, it still may help you.
Magnesium Based on surveys, it appears that about one third of us are helped by magnesium, one third worsen, and one third obtain no effect. The good news is that when magnesium works, it can work very well. Magnesium is the body’s natural calcium channel clocker. The recommended daily allowance is 400 mg/day. Alternative doctors often recommend 600 or 800 mg/day. Start with a small amount, 100 200 mg/day, and increase gradually. Use high quality magnesium because poor quality can cause diarrhea. My favorite magnesium product is Magnesium Plus Protein (mgplusprotein.com), but it is easier to get magnesium citrate or gluconate or Natural Clam (magnesium citrate crystals in water) from a health food store. Magnesium therapy requires normal kidney function and good hydration, and use in the elderly or dosing above the recommended daily allowance of 400 mg/day requires medical supervision. Alternative doctors (find one at ACAM.org) are usually more knowledgeable about magnesium than mainstream doctors. Under their direction, higher doses of 600 800 mg/day can be used. Other substances with mild calcium channel blocking effects are chromium, high doses of ascorbic acid, and the herb butterbur.
HERBS
Many herbs and spices are vasodilators, so I have to be careful about using them. Herbs that may have vasodilatory properties include ashwagandha, bay leaf, devil’s claw, echinacea, ginkgo biloba, hawthorn, maitake mushrooms, Siberian ginseng, skull cap, nutmeg, St. John’s wort and many others.
There are two herbs that help me: feverfew and white willow. These herbs are serotonin antagonists: they block the effect of serotonin on blood vessels. I chose them because, through trial and error (see 5-HTP test above), I learned that serotonin made my EM worse. I turned to serotonin antagonist drugs, cyproheptadine (Periactin) or pizotifen (Sandomigran, from Canada). Cyproheptadine had minimal effect, but pizotifen was extremely beneficial. Similarly, feverfew and white willow are moderately effective for me. Interestingly, all of these substances are used to prevent migraines. Please note: white willow contains salacin, a mild aspirin-like substance that can thin the blood: check with your doctor before using it.
Feverfew This serotonin blocker has properties similar to the medication Pizotifen, which is not available in the U.S. However, there are two cases reports in medical journals of pizotifen helping three people, including two with familial EM. Like pizotife, feverfew blocks specific serotonin receptors and can be as effective as pizotifen. Feverfew can be purchased in health food stores and on the Internet. Follow the directions on the bottle. Side effects are few, but it may cause stomach upset and aphthous sores in the mouth.
The herb butterbur has calcium channel blocking properties, similar in this regard to magnesium (see above). Because calcium channel blocking therapies can help some people with EM, yet worsen others, start with a low dose of butterbur and increase gradually until it is clearly helpful. If your EM worsens, discontinue.
THE 5HTP-SEROTONIN TEST
Serotonin is produced in the body via the pathway tryptophan > 5- hydroxytryptophan (5HTP) > serotonin. If you take 50 or 100mg 5HTP, within an hour or two you may see an improvement or worsening of your EM. If improvement occurs, you can continue taking 5HTP. Doses vary with different supplements but are usually 50 to 300mg per day. You can take 5HTP in divided doses such as 50 or 100mg three times a day. If 5HTP causes sedation, take smaller daytime doses and more at bedtime, or all of it at night. If 5HTP causes redness and pain, as it did for me, it tells you that serotonin producing medications (Effexor, Cymbalta, Prozac, etc) may not work for you or may worsen your EM. Instead you might try two herbs, feverfew and white willow. These herbs are serotonin antagonists: they block the effect of serotonin on blood vessels. I chose them because, through the 5HTP test, I learned that serotonin made my EM worse. I also tried serotonin antagonist drugs, cyproheptadine (Periactin) and pizotifen (Sandomigran, from Canada). Cyproheptadine had minimal effect, but pizotifen was highly beneficial. Feverfew and white willow are moderately effective for me. Interestingly, these substances also help many people by preventing migraines. Please note: white willow contains salacin, a mild aspirin-like substance that can thin the blood: check with your doctor before using it. Do not use white willow if you take any blood thinning medication or other substances including as warfarin, Coumadin, or aspirin.
CONCLUSION
When I developed EM in 1995, we were still in the dark regarding treatment. Hardly any doctors had heard of EM. Only a few treatments had been reported, and they rarely worked. Today things are much better. Our understanding and methods have grown considerably, and many people can be helped. Find a good doctor who will work with you using my guidelines. Keep trying things carefully and methodically. This is how I have obtained 95 percent control of my severe EM. Of course, I still must sleep with the covers off of my legs and avoid walking in the hot sun, but I rarely have pain and can do most of the things I want. I believe that significant improvement is possible for most people with EM.
NOTE TO READERS: Few studies have been done on EM, so there is a lack of established scientific fact about proper treatment. This article reflects my knowledge and personal experience with EM, and is meant to provide information for use of you and your doctor. This information should not be considered as a substitute for the medical advice of your doctor, nor is it meant to encourage the diagnosis or treatment of any illness, disease, or other medical problem without your doctor’s direction. Readers should not make any changes in drugs, doses, or any other aspects of their treatment unless directed by their doctor. Finally, after many years of disability from EM in the 1990s, Dr. Cohen is now highly active with no pain, but he makes no claim that his methods and suggestions will benefit anyone else.