My BFS Journey - 2006 Onwards

QuietTwitching

New member
Greetings All, I just wanted to share my experience with BFS. I first started with this mess in Oct. of 2006. I had a sinus infection. I came home from work, took a nap and when I woke up, my right tricep was twitching. It continued for a couple of days and then stopped. Shortly after, I began a job in a different group and it was highly stressful. The hotspot twitching episodes happened quite frequently. I did all of my research on the web and of course saw stuff about MS, ALS, Lyme Disease, etc. but none of that really worried me. I didn't think I had any of that. However, I was annoyed out of my mind so I looked for a neurologist. Since no one could really explain this phenomenon, I decided I would try to find a younger doctor. An eager one, not one who had been in the neuro game for too long. I did. The problem ended up being that the young one was working in the practice of the older one. That will come into play later. So, I went to the younger doctor who first ordered blood tests for potassium, thyroid, etc. Everything came back negative. Next she ordered the nerve conduction and EMG. Here comes an issue. Before I could have these tests done, she left the practice....so, the older guy (a complete jackbutt, by the way) administered the tests. They also came back negative. After this dude administered the tests, he gave me some questionnaire type thing to fill out. It looked to be an assessment of stress and anxiety. He told me to complete it and then he would come back to discuss the results. Well, he never came back to discuss the results. He apparently needed the room in which I was sitting so he escorted me out and gave me a prescription for some anxiety medicine. WTH??? With that being the case, clearly I never had the prescription filled and just suffered in silence. At this point, the hotspot twitches were lasting weeks at a time and I had al the buzzing and pins and needles and all that stuff going on and just figured that a lot of the reason this happened so frequently was because of the group I was working in. I left that group after about a year. After I left, the twitching still occurred but not nearly as frequently. Although when the hotspot twitching in particular occurred, it still lasted for weeks at a time. Time goes on and 2009 comes. The episodes have decreased significantly. However, for like the first 3 months of this year, I noticed whenever I had an episode, it was around my cycle time. So, I went to the gyn. Of course, when you tell the gyn that something is happening in congruence with your cycle, the first thing they do is put you on birth control. So, Seasonique it was. She wanted to see what would happen during the times when I was not menstruating and since with Seasonique, you only have 4 cycles a year, it seemed a good test.... Here is the next issue. I had breakthrough bleeding soooooo bad with Seasonique, it was literally like a 3 month long period! And I twitched a lot during that time. There was no discernable rhyme or reason just a lot. So, I cut the Seasonique.Another couple of months go by and I decide to see if perhaps the young neuro was still around just somewhere else. Lo and behold, I found her!!! She now has her own practice. I immediately scheduled an appointment. Because it had been so long and she didn't have immediate access to my records from before, we started from the beginning. I told her that I don't smoke, don't drink a lot, don't really care for caffeinated beverages, etc. When the episodes start, sometimes getting more sleep works and sometimes calcium works. She remembered that I worked out a lot so she asked me several questions about that. I told her that I do a lot of weight training but it is very rarely the muscles that I work out that give me issue (unless it is the triceps..and usually when I work triceps, I don't have that hotspot twitching). I did share with her that I do drink a lot of water and I sweat insanely hard. She said that although my potassium blood work from before was normal (we both remembered that part) she wanted me to start taking Vitamin E and a potassium supplement. She then wrote me a prescription for Magnesium Oxide and said if that if the potassium doesn't work, try the magnesium. Do that for a month. During that month, she would get my records from the old doctor and then I should come back to see her. It just so happened that I was having an episode that day. So after I left her office, I went to CVS and got the potassium and vitamin E. I came home, ate and took them both. Within minutes, the twitching stopped. Ever since then, whenever I have had one of these hotspot episodes, the potassium seems to knock it right out. There has only been one time when it didnt work immediately and even then, the episode only lasted about 7-8 hours. A big improvement over 1-2 weeks. Let me stipulate that the reason I am specifically referencing hotspot twitching is because that is what makes me slowly go crazy. I still have the migratory twitching but I can deal with that. I do sometimes have night jerks but even those have decreased significantly. I am not twitch free but it helps a lot to know that for me, controlling it enough to deal with life was relatively easy. I have never taken an anti-depressant and would urge anyone to make sure that they REALLY trust their doctor before filling a prescription for such drugs. If you lose lots of water throughout the day as do I with all the water that I consume and all that I lose via sweat, try the potassium. If you can, try your hardest to remove yourself from the stresses of life. I can attest to stress causing the symptoms to be much worse. I know that was long but hopefully this will help someone. Take care.
 
Thanks for sharing something that worked. I haven't tried magnesium yet but probably will soon. I don't think my problem could be potassium since I don't sweat that much and I eat foods with tons of potassium.Krackersones
 
It is really interesting. Before she told me to try the vitamin e, potassium and/or magnesium I told her that sometimes drinking some milk will work and that sometimes drinking gatorade helped. I eat a banana everyday usually before I work out. She told me that calcium, magnesium, and potassium all sort of work together within the body and that sometimes when the balances are severly out of whack, the body may act adversely. So this could be why sometimes one works and sometimes another. Since this whole revelation, I stopped bs'ing about taking calcium everyday (I'm a 34 year old female. Sometimes I would remember to take the calcium and sometimes not...I really have an aversion to taking pills) and ever since then, the missing part of the equation I suppose when the twitching gets going is the potassium and I only take the potassium during these episodes. Its not something that I take everyday. I eat lots of magnesium rich foods so that could be why that part hasn't been an issue for me (or at least not yet). So far, this is what has worked for me and I'm glad that I was able to reunite with this particular doctor. She seems genuinely concerned and when I told her how the symptoms had eased she was almost as excited as me (...almost).She does do on thing that upsets me though and I did tell her. We have probably all heard it from a doctor is our struggle to understand this thing...and that is. "I know its aggravating and bothersome but it is benign so if this stops working at least you know that."Okay, don't get me wrong, there is certainly comfort in knowing that it is benign and recognizing that there are worse things I could have. But that comment to me says "I don't have an answer for you other than suck it up." What I told her is that RLS is benign but someone thought it important enough to study that and try to help so why not understand RBS (restless body syndrome, aka bfs). I also equated it to Chinese Water Torture. It doesn't hurt. No one is smacking you around...but it is torture nonetheless. TORTURE I said!!!!!! I think she finally got it after I gave her that analogy.So hang in there everyone!
 

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