Most all of us can relate, Eric. They can drive you crazy if you let them, especially during the first few months after they start. Unfortunately, there is no magic bullet that works across the board.
I was a very atypical onset (I’m 62) that overnight developed full body fasciculations as my first symptom, with no clinical weakness until several months later. I’ve had 14 months of nonstop twitches, and I’ve found some relief with the following:
* Echo everything Kim said. I’ve also reduced sugar, caffeine and limited daily exercise (I’m still in good shape functionally, but multiple muscle groups are slowly weakening and I must limit overdoing those muscles);
* Time. For the first six months or so, I nearly went crazy obsessing over my “body in motion.” At some point, though, my mind began to filter out the twitching—or maybe accepted—my new normal, and now they don’t have the same mental effect. Unless yours magically stop, you will probably reach this point as well;
Distraction, distraction, distraction. Since you can still move around fine, any chance to distract through activities really helps for that period of time. Eating out, shopping, yard work, card games, etc., can really shift your mind away from the twitching, at least for a couple of hours;
Sleep. I, too am on trazadone, and two 50mg tabs before bed really helps me sleep and seems to calm my fascics. I know I’m still twitching some throughout the night, but when I get up to pee and lay back down, for example, there are far fewer twitches. Hopefully they don’t interfere with your sleep habits;
Good luck trying all the suggestions above. Also keep in mind that research has shown that the location and frequency of fasciculations is not necessarily an indicator that those muscles will fail soon thereafter.
I’m also reminded of a video by Stephen Sherry, who has had ALS for 20 years and is one of Dr. Bedlack’s “ALS Reversal” cases in that his symptoms have stabilized and showed some improvement over the years, for whatever reason. He Is still very functional, but also has constant fasciculations. At one point, he and his wife broke his body into quadrants and counted the number of fasics, and he was revving at about 600 per minute! Damned if he’s still doing well in spite of that, though. Best wishes, Kevin
.... Only thing I noticed was that stress or nervous energy seemed to make my twitches worse. One bright side to loosing muscle for me was that there was less to twitch....
