Do you have a random twitch or two that won’t stop or moves around? You may have “Benign Fasciculation Syndrome” (BFS) or its sibling, “Benign Cramp Fasciculation Syndrome” (BCFS).
BFS is not fatal – thus, the term “benign,” but it can be disruptive and distressing. It varies in symptomology, duration, and intensity. For some, it might just manifest as a slight twitch in the thumb. For others (such as myself), it can involve full body tremors and internal shaking. Benign Cramp Fasciculation Syndrome can also involve muscle cramping.
BFS is not clearly understood by neurologists, much less regular doctors, and many don’t even know about it. Nonetheless, this has led to some folks proclaiming that since it doesn’t kill people, it must just be a manifestation of anxiety. This is further fueled by movie depictions of neurotic twitchers, such as Chief Inspector Dreyfus in the original Pink Panther movies (played by Herbert Lom), who ends up in an insane asylum.
Rest assured, though, having BFS doesn’t mean you are crazy!
Thus, before we discuss a holistic approach, we must first talk about anxiety and its potential role in BFS and BCFS.
BFS – Is it Just All in Your Head? Or Something More?
Sometimes, but not always, BFS may be caused by anxiety. And if you are one of those people who had your twitching go away after managing your anxiety, then great, maybe you don’t need to read further. The challenge is, BFS can also cause tremendous anxiety. Is it a chicken or an egg?
The problem is, if you have BFS and don’t have anxiety (or you know that anxiety is not the trigger), you may find yourself stymied when you go to online support groups for help. I can pretty much guarantee you will soon (if not eventually) have some self-appointed online therapist tell you that you must have anxiety if you have BFS, even if you don’t realize it.
Some folks in the “BFS is always anxiety” contingent are so adamant, they can get pretty pissed off at you for disagreeing with them. I speculate that this could be due to repressed fear. Many people worry that they have ALS when their twitches start. (This is the disease that put Stephen Hawking in a wheelchair). The idea that BFS may actually be caused by an unknown physical issue can be upsetting. It is simply simpler to say BFS has one cause – anxiety – and try to move on with life.
This sort of all-or-nothing approach – assuming the absolute worse (ALS) and writing off any and all symptoms as just anxiety – is ultimately not productive or helpful to a lot of people with BFS. For some, no amount of anxiety medication removes the condition, and sometimes, it can even make it worse.
The middle ground is to look at BFS holistically – and understand that it may be caused by one or a number of imbalances in the mind/body system. The good news? Many, if not most, of these imbalances can be corrected or at least managed. This may not totally cure your twitching, but you may end up feeling better overall regardless.
Let me reassure you – the chances of you having ALS because of BFS are almost zilch to none.
So, if you are new to this, understand the following: BFS online support groups are minefields. Only you know whether you have anxiety, and it’s not ethical for anyone to try to label you with “health anxiety” just because you are quite naturally worried about a troubling symptom such as twitching. And even if you do have anxiety, that doesn’t mean your BFS was caused by it!
People with anxiety don’t have this magical shield around them that makes them immune to actual physical problems!
Therefore, don’t let people mindfork you into thinking you caused your BFS or aren’t good enough simply because you couldn’t think your way out of your twitching like they supposedly did.
Yes, for some folks, a random eye twitch may be simply anxiety driven. But not for all. So, let’s look a little deeper.
Other, Possible Causes of BFS (Not Anxiety!)
I have some of my own theories as to other syndromes that may cause or at least aggravate BFS.
Please note that my tips below sometimes involve food and over the counter supplements. These suggestions are based on my own experience and research and are not meant as “medical advice” but are for educational purposes only. Do not start any new supplements or a dramatically different diet before consulting first with your doctor.
1 – Toxins
Toxins can be anything from mold toxins (mycotoxins) to toxic medications (such as fluoroquinolones, see below) to other chemicals such as pesticides. I’ve seen some BSFers correlate their BFS to their military service and being exposed to chemicals used in warfare (not just Agent Orange, but standard weapons and bombs too). Toxins can include heavy metals such as lead or even metals from tooth fillings. If you have symptoms such as brain fog, unexplained fatigue, and odd aches and pains as well as twitching, and other causes have been ruled out, toxins may be an issue.
Practical Tips: Ideally, you’ll get tested for toxins and not just guess about it. Mainstream medical doctors can test for heavy metals with a 24-hour urine test. Mycotoxins require specialty tests by labs such as Great Plains and Real Time Labs, not typically covered by medical insurance, but you may not need a doctor to order them depending on your state.
To heal from toxins, eat a healthy, organic diet. A well-planned detox guided by a reputable naturopath or integrative doctor may help. Don’t try detoxing on your own without professional guidance. People who are weak, sick, or over the age of 65 should probably not do a detox. If mold is your issue, you may need to get your home checked out. You can purchase a mold testing kit online or at many hardware stores.
2 – Food Allergies or Sensitivities
Food allergies or sensitivities may cause or aggravate BFS. Unfortunately, testing for food sensitivities with IgG antibodies is not often covered by regular insurance, as the conventional wisdom says these tests are bunk. However, many people swear by these tests.
By the way, some people suspect that the current rash of gluten sensitivity is actually not due to the gluten, but the glyphosate (an herbicide) used on mainstream crops – so toxicity may still be a factor.
Practical Tips: Try an elimination diet. Prefer organic foods. Avoid processed foods. Avoid nitrates and sulfites.
3 – Neurotransmitter Imbalance
Does BFS have some commonalities with Restless Leg Syndrome? I believe it does. There may be some sort of dopamine imbalance going on, possibly. GABA (not the drug Gabapentin, which mimics GABA) is also the neurotransmitter that helps calm down neuroexcitability.
Practical Tips: Getting tested for neurotransmitter imbalance is difficult as the tests aren’t that accurate. You can try supplementing your diet with natural sources of l-DOPA or GABA, both available over the counter. (GABA has helped me personally.)
Note: GABA is not supposed to cross the blood-brain barrier, so unless you have a leaky gut and possible a leaky brain (like I might have), some holistic practitioners recommend high doses of GABA, up to 10,000 mg per day. I take 750 mg of GABA daily and while it hasn’t cured it, it helps – and can also help with anxiety!
4 – MSG and Hidden MSG
Issues with MSG are also neurotransmitter issues, but deserve a separate bullet. MSG (glutamate) causes neuroexcitability. You may find you twitch more after consuming MSG (I definitely do) or other neuro-irritants like Aspartame. Parmesan cheese, by the way, is a big no-no, as well as nutritional yeast flakes, both of which are big sources of hidden MSG/glutamate. Soy sauce may also be a trigger.
Practical Tips: Try to reduce or avoid MSG, glutamate, and hidden MSG in your diet. Read your food labels! Check out the Unblind My Mind website, which is about the possible link between MSG and autism, and follow their dietary guidelines.
5 – Histamine Intolerance and Mast Cell Activation Syndrome (MCAS)
Too much mast cell activation can cause excess release of histamine and prostaglandin, the latter of which can aggravate nerve cells. “Histamine Intolerance” is more about your gut not breaking down histamine properly, which may be due to a DAO imbalance (sometimes genetic). Mast Cell Activation Syndrome (MCAS) is hard to diagnose but is more systemic. It is treated with H1 and H2 blockers, which are antihistamines and antacids, as well as “mast cell stabilizers.”
Practical Tip: Reduce histamine producing foods in your diet (you can find many lists online). If DAO is an issue, you can get that in a supplement. You may also try a quercetin supplement, which is a flavonoid (plant pigment) found in foods like onions and sweet potatoes. Eating foods high in quercetin, like capers, onions, and dark red or blue fruits may help. The herb stinging nettles can also help with mast cell activation. Turmeric is also an excellent anti-inflammatory and anti-histamine.
6 – Nutritional Depletion or Excess
One of the first things people will typically recommend when they hear you have a nerve issue is “B vitamins.” Well, here’s the thing. A B12 deficiency could possibly be causing some of your BFS symptoms, but it’s the opposite with vitamin B6. Too much vitamin B6 can damage the nerves – possibly permanently.
People who have certain types of MTHFR gene variations may be more susceptible to B6 toxicity because their bodies cannot process most man-made B6. To find out whether you have an MTHFR mutation, you can get a DNA test done by a place like 23andMe (you can use my referral link, which gives you a discount), and then upload the raw results to Genetic Genie.
Magnesium is one mineral that is relatively safe and commonly depleted. It can give you loose stools but that’s a bonus, I suppose, if you tend towards constipation. Vitamin D is often deficient as well, but only take high doses if a qualified practitioner recommends it. My neurologist told me that too much vitamin D can also temporarily damage nerves.
Practical Tip: Unless you have a lot of personal knowledge and training, you might be better off working with an integrative doctor than trying to self-medicate with high doses of vitamin supplements. And no matter what anyone tells you, avoid taking high doses of B6. Be cautious with other supplements. I made the mistake of taking l-glutamate powder to heal my gut on the recommendation of an herbalist-in-training, not realizing it was basically like taking spoonfuls of MSG (see above).
7 – Dehydration and/or Electrolyte Imbalance
My BCFS started after an infection, but it was aggravated due to my body being weak and unable to digest properly. A few times, my BCFS was so bad I was literally shaking from head to toe, visibly, in the ER. This was due to an electrolyte imbalance as well as some dehydration. I was deficient in both sodium and phosphorous, the latter of which can be very serious, but fortunately very rare. I was put on a sodium/phosphorous drip.
Practical Tip: Serious dehydration should be checked out at the ER. Make sure you drink enough water but also get enough salt and electrolytes. I now use Salt Sticks, which is a chewable tablet that kind of works like Gatorade, except without the liquid and added sugar.
8 – Structural and Skeletal Issues
BFS can potentially be a result of an impinged nerve, which is a common condition. This can happen if you have a herniated disk in your back or have spinal stenosis, which is a narrowing of the canal where your spinal cord travels.
Sciatica is quite common and is related to piriformis syndrome, where the muscles in your rear end get knotted up and tight, thus aggravating the sciatic nerve. I once spoke with a man in an online support group about his symptoms of a buzzing and twitching leg. I asked him if he was sitting a lot and mentioned piriformis syndrome. It turns out he was a truck driver by trade and the bad leg in question was the side where he had been sitting on his wallet! Removing the wallet, and stretching when he took breaks, alleviated his symptoms.
Practical Tip: Make sure you move and stretch if you have a desk job or work in a seated position all day. Find a yoga therapist to help you with a daily practice.
9 – Acute and Chronic Infections
One of my neurologists told me that BFS is often caused by viruses. If BFS is caused by a viral infection, it will typically last for about a year, according to that neurologist. For some people it may never go away. It will annoy you, but not kill you. Chronic infections such as Epstein-Barr virus, Lyme, and candida may also aggravate the nervous system. Candida produces gliotoxin, which is a mycotoxin that can damage nerve cells.
My BCFS started after an acute infection, which led to my Epstein-Barr virus being reactivated. I also developed a systemic candida infection, and had tested positive for gliotoxin through a mycotoxin test from Real Time Labs.
Practical Tip: Your mainstream doctor or Primary Care Physician will probably not be a lot of help here. Find an integrative doctor who has a good reputation if you can along with a reputable herbalist or Ayurvedic Practitioner. Try to steer clear of “Lyme Literate Medical Doctors” (LLMDs) as your first choice. They will tend to see everything with a Lyme-colored lens and often overprescribe antibiotics. Medical Medium is also frequently cited as the “go-to” for Epstein-Barr, but take his recommendations with a grain of salt. Some are decent, but his raw vegan detox is counter-indicated for many people, especially if you have a strained or weak digestive system.
10 – Autoimmune Disorders
When I was originally given a workup over my neurology symptoms, I was tested for all types of autoimmune disorders (the tests were negative). Autoimmune disorders are when the immune system attacks the body itself instead of an external threat like a virus or toxin. This can cause systemic inflammation as destroy the body’s own tissues and organs, like the thyroid.
Practical Tip: The good news here is that these autoimmune disorders are recognized by mainstream science and you probably won’t have to argue with your doctor to get these tests if you really need them. The bad news is that mainstream science doesn’t have a cure yet. I’d recommend balancing out your Western treatments with alternative medicine. Work with a qualified Ayurvedic Practitioner, TCM practitioner/acupuncturist, naturopath, or qualified herbalist to help reduce symptoms and heal the body. Remember, your immune system is overactive and confused, so do not take herbs that boost the immune system.
11 – Small Fiber Neuropathy
Small fiber neuropathy refers to damage of the sensory, non-motor nerves that are close to the skin’s surface. It is not fatal and does not interfere with normal movement. Some preliminary research has found a correlation between small fiber neuropathy and BFS. This definitely blows the “BFS is always caused by anxiety” argument out of the water, since you can easily diagnose small fiber neuropathy with a skin biopsy.
In my case, I developed small fiber neuropathy after my serious infection, so at least some of my BFS may simply be due to nerve damage.
Practical Tip: If you have burning, tingling, and/or numbness along with your twitching, and you don’t have a structural problem such as a bulging disk in your low back, then you should speak to a neurologist about getting a skin biopsy done for small fiber neuropathy.
The most common cause of small fiber neuropathy is diabetes, so it is important to get this checked out by a physician. Another cause is chemotherapy drugs. However, I don’t have diabetes, and I have never had chemo, but I still have neuropathy. There are many things that can cause it, including much of what I listed above. Small fiber neuropathy can be helped with supplements such as Alpha Lipoic Acid (start with a low dose), luteolin, and tart cherry juice or powder.
12 – Medication Side Effects
Your pharmaceutical medication may be the cause of your twitching, even if it is not listed on the label as a potential side effect. A commonly known over the counter medicine that can cause benign twitching is the anti-histamine Benadryl. I personally experienced a rather crazy level of twitching and jerking on one half of my body while I was in high school as a reaction to a combination of erythromycin and Sudafed. My mom is convinced it was the material in the capsule itself that did it.
Medications can sometimes cause neuropathy and nerve damage. This is not made up – it’s on some black box warning labels. I had to stop taking Avelox, a fluoroquinolone antibiotic, after a few days because I started developing buzzing and tingling in my back and my feet. I had read the warning label and recognized it as a potential side effect. This was years before my serious infection. Did that drug actually cause my small fiber neuropathy and contribute to my twitching years later? Perhaps.
Practical Tip: If you are taking medicine that you don’t have to rely on, consider tapering down the dose, stopping it for a while, or switching it with another medicine. If it is a prescription medicine, you will need to discuss this first with your doctor before stopping or reducing any medication. And even if you have never had a reaction to a fluoroquinolone antibiotic in the past, I personally believe all BFS sufferers should avoid them and list it as a drug allergy when going to the doctor – just in case.
13 – Hormones and PMS
I have chatted with many women with BFS and the consensus is clear: PMS and hormone fluctuations make it worse. My nerves can get so bad when I am PMSing that one weekend I was literally crying about it – and I’m not the type of woman to cry at the drop of a hat.
I wonder if the nerve aggravation might have something to do with neurotransmitter imbalances – as progesterone increases or decreases during the menstrual cycle, so does dopamine and glutamate. One woman in a BFS group recommended getting aldosterone checked out – this is a hormone that regulates the balance between sodium and potassium, and it also fluctuates during a woman’s hormonal cycle. I got mine tested and it was a bit low, so I have an appointment with an endocrinologist pending.
Practical Tip: You’ll need to find a good OB/GYN, integrative doctor, endocrinologist, or woman’s health specialist to really troubleshoot this.
14 – Vaccines
I put this one last since some people immediately shut down the minute something negative about vaccines is written. Now, before you declare me as anti-vaccine, the neurologist who diagnosed me mentioned vaccines as a possible cause, but still told me it was OK to get my shots. Apparently, at least one of his BFS patients would regularly twitch more after a vaccination, but it eventually subsided. Reassuring, kind of.
Practical Tip: It’s really up to your conscience if you want to get vaccines or not. I take the risk since I would rather have some control with the vaccine than get a really bad case of the flu. You might be able to request vaccines with fewer additives or no thimerosal (which has mercury in it).
The Good News About BFS
As you can see from the list above, BFS may be caused or aggravated by many things that will not kill you. Things that you can control. You may have to experiment to find the best combination of diet, herbs, and supplements that help tamp down your twitching. You may find you have multiple overlapping causes like I do, such as hormonal imbalance, chronic infections, and food sensitivities. Be patient – solving this puzzle will take some time.
Now, if you have additional neurological symptoms such as paresthesias (numbness, burning, tingling), please check with a neurologist. If you are at risk of diabetes in particular, you want to be sure that diabetes isn’t an issue. It’s also a good idea to work with a functional or integrative doctor who can also look at other issues such as autoimmune disorders.
Just don’t worry that you have some sort of scary, degenerative neurological disease. Even if you did, removing sources of nerve irritation like toxins or mast cell aggravation may actually help to prevent or even reverse it.
Please share your tips in my BFS holistic approaches Facebook group.