Benign fasciculation syndrome (BFS)

Hi @tutina and welcome to Mayo Clinic Connect. You'll notice that I moved your message to this existing discussion about benign muscular fasciculation. I did this so that you can connect with @captainanxiety8 @summer49 @lizaa and others talking about BFS. I can imagine your concern as your sons are young and that this may be affecting both of them.

Are you sons by any chance taking the same medication, for example for allergies? How long has your eldest son been taking the additional minerals and vitamins (D, B12 and magnesium)?

Hello @tutina, I would like to add my welcome to Connect with @colleenyoung and other members. Here's some information that hopefully will help you understand the condition in layman's terms.

Benign fasciculation syndrome: What causes muscle fasciculations?
– https://www.medicalnewstoday.com/articles/320388

To repeat Colleen's questions, are your sons by chance taking the same medication, for example allergies? How long has your eldest son been taking the additional minerals and vitamins (D, B12 and magnesium)?

So I shared this on another forum, and people found it useful, so perhaps it might be useful here too. I've kept this journal for about two months now. I have tracked blood pressure, stool, the food I eat, the twitching symptoms, and sleep pattern. Here's what I've noticed:

1. If I get a minimum of 7 hours of sleep, without waking a single time during that sleep, then the following day I have barely any twitching at all, almost none. To achieve this I try to stop using all digital devices 2 hours before bed, I take Melatonin 6mg, I use a nasal strip, drink non-caffeine tea(I prefer Yogi Bedtime tea), and take an antacid.

2. If I wake up even once during the night, regardless of how deep I am sleeping, the following day is absolute twitching nightmare. Like today, I did not sleep well last night, woke up a few times briefly, and now today my right and left hand palms are twitching like crazy.

3. Any kind of dairy(cheese, milk, yoghurt, ice-cream, butter, even butter as an ingredient in cake), spicy food, beer(specifically, not wine or other things), if eaten any time after 7PM then I will have a hard time sleeping and the following day is an absolute nightmare.

4. B12, D, Multivitamins do absolutely nothing, and Multivitamins sometimes aggravate the situation.

5. Magnesium Glycinate might actually be helping. The occasions where I take it, and this is likely a coincidence, but shortly after I barely have any fasciculations at all. So far I have been taking 400mg - 600mg per day. From what I understand, it has to be specifically Magnesium Glycinate, not some mix of things or Glycinate + something else. I have met others who claim it has helped reduce their twitching by 80-85%.

6. Betablocker, not convinced it does anything at all.

7. If I eat dinner after 8PM then, again, sleep will be disturbed at least once and I will have a miserable day the next day.

8. I get about 4-5 days every month where I feel great and have almost no twitching, and those days almost always coincide with sleep being uninterrupted.

Those are the patterns I've found so far, at a glance and not looking deeply at the data I've collected. So I suspect(not confirmed) either:

A. I took exforge(Amlodipine and Valsartan) every morning for several years, and stopping it abruptly for half a year and starting again screwed up my body somehow. Or long term use of this drug did something to disrupt my metabolism.

B. My deviated septum got worse somehow and now my sleep is terrible, which, over time has resulted in fasciculations and sometimes pain. Or something else is going on in my body to cause poor sleep. Thus possibly sleep apnea is the cause.

C. I have subclinical hyperthyroidism with my TSH always at 0.45 or slightly below and T4 always near 19 or so. DNA test says I have a very high chance of thyroid cancer, despite having an ultrasound that says it is totally normal.

D. The many many "benign" kidney cysts I've got(something like 15+) have something to do with it, despite the specialist saying they are nothing to think about and cause no symptoms at all.

or

E. That I have some digestion issue and became lactose intolerant(I'm 40 years old now) and possibly intolerant to something else and this long term has resulted in BFS somehow.

That's what I've got so far. Would be curious if other people also started keeping a careful journal to see what they experience and compare.

Also keep in mind, there are scant few neurological conditions that have a cure yet, so the only thing a Neurologist can do is give a benzo. Be careful of benzos because they're not going to work long term, your body will get used to it, if it even works at all. So it might provide some short term relief, but then you'll find after a month or two that you have to increase the dose, to the point where I've heard some people taking these things 3 times a day. Try to change things like sleep, diet, and exercise habits. As silly and absurd as it sounds, and I thought it was total BS, sleep can actually cause this. My journal *almost* validates this theory in my case and there are real medical studies on it. Aside from that, lactose intolerance and gluten intolerance together can do it. If you want to try going gluten free, you can't just not eat bread for a week and say you tried it. You have to go full gluten free strictly for at least 30 days or more. In the medical studies, the one case where they saw this, it took something like 6 months to eliminate the fasciculations on a strict gluten and dairy free diet(which, frankly, is very difficult and potentially expensive).

@didi09 @captainanxiety8 I have chronic myofascial pain and some pain sensitization and also occasional twitches (and some in the distant past). I believe it is excited nerves behind all of those. The itching is, quite possibly, a sign of “nerve pain”. Small pain receptors are unmyelinated (as are your autonomic nerves) so they are irritated more easily. I believe diet and exercise will help. Turmeric, all manner of flavonoids ( I like ORAC green energy powder), higher vitamin c with doses throughout the day help me, I think. I was able to get off nortriptyline (a tricyclic antidepressant which helps with nerve pain). I had muscle pain and enthesopathy ( pain \ sensitivity) at attachments and some burning/tingling and sciatica at one time. I’d take a low dose nortriptyline in the afternoon to avoid insomnia. If you do need something for the itching try nortriptyline or cymbalta at low doses. Some other people mentioned lyrica - I’d stay away unless the others won’t work. BTW, one of the side effects of nortriptyline is fasciculations. If possible, I’d try other diet changed first if you’re willing. It helped me at one time but I’m glad I’m off it.

I believe I also have a problem with too much fibrin (the blood clotting protein) deposition (or something like that which forms amyloid like deposition). So I also take some enzymes called nattokinase and serrapeptidase in between meals. Small nerve fibers might be more irritated by fibrin deposition. The enzymes help me. About 10% of people can’t tolerate them. If you have blood clotting disorders they are counter indicated. Many supplements can change blood pressure- so monitor that. It might be worth a try.

You may never know what is causing the fasciculations. However, consider researching neuropathy and adjust your diet accordingly as there are supplements and dietary changes (like adding healthy fats) that can help and there often is a tie in with gut health, too. You may either reverse it or at least minimize symptoms with the right diet changes. Good luck.

Colleen, Thank you for moving my post. Neither one of my sons is taking any medication. The oldest started taking (D, B12 and magnesium) about a month ago. The youngest has been taking only magnesium for a week. The twitches are becoming more frequent for both of them. For my youngest it seems that they occur more often when are at rest. For the oldest they occur all day.

Thank you for the article John.

There are some side effects to Gabapentin and Lyrica (also, Lyrica is often not covered by insurance policies, as it's expensive). I experienced some lethargy, and little beneficial effects regarding the twitching. Mine were the result of back surgery (diskectomy); surgery was a success, but paraesthesia and fasciculations are apparently a side effect in about 10% of cases. I like the BFS to tinnitus; it's most noticeable when there is no other muscular activity going on. If I am exercising, walking, or otherwise physically engaged, the large-scale muscle signals override the low-level "noise" of the twitching.

Hello @sonsowy, I would like to add my welcome to Connect along with @lilypaws and others. Thank you for sharing your experience with the side effects as a result of your back surgery. There is also a discussion on paresthesia that you may be interested in joining and learning what others have shared -- Paresthesia, abnormal sensations: https://connect.mayoclinic.org/discussion/paresthesiaabnormal-sensation/.

Are you still taking medications for the BFS?

@sonsowy @johnbishop @lilypaws Antidepressants (cymbalta and nortryptiline may have some of the fewest side effects) can decrease nerve pain / nerve activity (such as paresthesias and fasciculations (twitches)). BTW, one known side effect of nortryptiline (Pamelor) is fascicuations! Other supplements you can use to reduce nerve pain might include: Supplements such as Magnesium, others that are antiinflammatory in nature such as: turmeric, ginger extract, silimarin (milk thistle extract) and also other healthy fats (such as 1 tblsp hemp seed oil with a meal). There may be others you could try. I also like various flavinoids (try some green powders such ad ORAC green energy) plus extra vitamin C with each of several meals. Those two supplements promote healing.

There are other particular supplements for particular medical conditions. Be sure to check blood pressure as some supplements alter blood pressure (some lower, some raise; avoid raising). Also, some excess nerve activity (such as excess sweating; essentially a paresthesia) can be reduced by using tens pads over the area. Gentle tens over the area can reduce that (often called iontophoresis - but it is often done with just water and standard electrolyte pads - not necessarily any "ions"); essentially it is just tens you you can do that yourself. I have a combination TENS/EMS machine - it's easy enough to use those. TENS might be worth a try. Those are some of the possible treatments.

One confounding issue is that small nerve fibers and your autonomic nerve fibers are often not myelinated (insulated) so they may produce pain signals, aberrant digestion/sweating/blood pressure fluctuations perhaps more easily (i.e. more paresthesias and also pain) early in a disease process (for instance, IBS-like symptoms often accompany other diseases; that is essentially an autonomic issue). If you can reduce inflammation by eating less sugar, having a healthy diet and also exercise sensibly (to toleration) to boost circulation. Also, nerve compression due to tight myofacial regions can clamp on a nerve giving you various symptoms (burning / tingling, sciatica, etc.). If you can ease that tension via stretching, exercise, myofascial release, etc. it helps. I have also used some enzymes called nattokinase and serrapeptidase taken between meals. If you use those, ramp up gradually, make sure you are not already on blood thinners and consult your doctor. However, that is definitely alternative medicine and he most likely won't have heard of them. Those enzymes helped relieve some pain as well as stiffness that I had. Those enzymes may help myofascial tissue remodeling and remove scar tissue / deposits that may cause that nerve irritation (who knows how they work - but they seem to for me). Good Luck.