OK, I have a dumb question....SO I have been cleared by two of the top ALS specialists in California, including one considered to be the best. My fears of ALS are nearly completely gone, however I am being tested right now by BFS and I just have a question about the very definition of the word "hotspot".Yesterday was fairly stressful and I was twitching very very intensely all over, but my left bicep toward the elbow was pretty much going all day. I have had a spot before that has gone for hours, so this isn't new to me, but this spot went all through the night, basically preventing me from sleep and now into the morning. Of course if I flex it, the twitch will stop, but as soon as I relax it will start back up. Its the same place, just won't quit. I could easily take a video right now of this but I am done with videos. I guess my question is...Is this what the very definition of "hotspot" is, not hours, but over a day? Have you ever had a twitch or 'twitches' that kept you awake because it/they were so annoying? BFS is really testing me right now and I could just use the feedback. Had several days of mild twitching after my last doctor visit, but nothing like yesterday for a long time. Thank you fellow BFS'ers for your feedback.
Question about BFS Hotspots
- Thread starter GHayes420
- Start date
Greg,I've had hotspots go for WEEKS and even MONTHS! I had a spot in my shoulder that went all day, all night, prevented me from sleeping as well. I eventually laid directly on the shoulder and it still didn't stop it but it smothered the twitch. That spot went away after about a week. I was moving a bunch of fire wood a couple weeks ago and my middle finger twitched for 3 straight days after. So one day is nothing.-Matt
Hey Greg,My hotspots can last several hours to several days or weeks.I understand what you're going through; I've been having a hotspot in my left hand for several days and the night before yesterday I barely closed my eyes. I was sooo tired the next day. I was just thinking about that stupid twitch the whole night...
JohnnyRocket
Well-known member
Greg, you know darn well this is a hot spot. People have hot spots for days, months and years sometimes. That's what hot spots do.....they keep twitching in the same spot. As for keeping you awake at night, I am surprised you are asking about this. I thought you have had many sleepless nights in the past due to twitching...or is my memory failing me?
seadragonsovereign
Well-known member
Right now a muscle in my left tricep is twitching for about 10 seconds at a time, repeating every couple minutes or so. It will go away, I know it. Then resurface somewhere else in a very similar maddening pattern. This would be my definition of a hotspot. This in addition to the myriad single twitches (popcorn machine) and the nonstop ones in my calves and feet. I once had a hot spot in my upper front right shoulder for over a month. It worried me at the time, but then went away and has seldom twitched again. But since I twitch thousands of times a day, my "hot spot" will be different from someone who "only" twitches a hundred times a day. Don't worry about them.
Thank you all for your reply. Johnny, I have not had twitching "keep" me up at night. I have had and still do have twitching that goes all night long while I sleep. I notice them when I awake from a dream or something similar. I usually can talk myself down without a problem and go back to sleep. I am not sure why this hotspot is bothering me so much mentally, that it was too hard to sleep comfortably last night, that's all. I understand the meaning of hotspot, but just to be clear, I am talking about a continuously firing twitch that goes maybe 30-60 times a minute in the same spot. It has been over 36hrs now. I have had some dandy's that lasted maybe 5-8 hours, Just nothing that lasted this long that I can remember. I once had the internal buzzing in my thigh that lasted three days, but that was not as bad as this. Thank you all very much for your feedback and reassurance. I know this is just a mental hurdle and part of the game.Many thanks. Greg
BlueWolf92
Well-known member
I have buzzing almost continuously behind my left knee and have had that since almost the beginning of "pin the tail on the twitch". It drives me nuts and feels like a bunch of bees swarming just under my skin. I wonder if buzzing is just really super small twitches that fire non-stop as opposed to a bigger twitch that hits one spot but for a much briefer period of time or the popcorn/firefly twitching attacks that are body-wide and can last for a short, medium, or long-ish period of time. The ones that bug me the most are the tremors - which could be their own version of a twitch - which moves a finger or thumb or toe back and forth for several minutes and happens throughout the course of a day. Hate those.
christinasgirl123
Well-known member
Sure is that a hot spot.....I have had a spot above my ellbow going for dayi, and I mean not on and off, I mean continuously. As well did I have several hot spots like that in my hands for 3 or 4 days. Well, my calves for months.
)bfhopeful2
Well-known member
I actually had the bicep thing for about a week. Machine gunning non stop. Now the tip on my tongue is going for about two weeks now. Today my lip decided to join in. Went and saw phychiatrist and he suggested anti psychotic meds for me. Not anti depressants but *beep* seraquol...said that i have an obvious obsession with als and that its not real. I bet if his tongue was twitching he would see wtf im taking about. However i must admit rhat it is an unhealthy obsession. So here comes the paxil.
So, while I was reading this this week, I was thinking "wow, I'm glad I haven't had a hot spot in a long while". Lo and behold, I have a new hotspot. It's on my arm, and is going from one muscle (bicep, maybe?) to another (some muscle really near the inside of my elbow).All day long it's been twitching (where I haven't been twitching as a whole much at all lately). Here's the question I have for the rest of you: do you ever get twitches that twitch like 20 times in one second? Or maybe trembling is a better description. My eyelid has done that but most of my other twitches are either one twitch or a couple in a second, but not like this. This is really weird.Funny how anxiety comes flooding back when some new symptom appears out of nowhere. I'm almost a year into this crap, and while logic is constantly in my head telling me I've had weird hotspots before, and that they will go away, I'm back to spending all day thinking about this stupid hotspot, wondering if something is wrong with me, and wishing it away.Speaking of which - does anyone have a trick to make a hotspot go away? I doubt it, but thought I'd ask.Mitra
HI Mitra. Its 5:30am here in California and I am really pushing the edge of my limits for anxiety and understanding of BFS.Today marks the sixth day that my left bicep has been twitching. Only my left bicep, NOT my right. Sure I occasionally get the big thumpers elsewhere, but it is VERY focal right now on my left bicep.It is SO noticeable and SO prominent that my wife can see and feel them. If I take my right hand and squeeze my left bicep, you can feel them, constantly going.It is going night and day.This feels focal, this feel totally different than anything I have felt before. Even my wife is scratching her head, she has not seen this in my 9 months thus far.Can ANYONE relate or tell me that this is normal BFS??? because this is really stretching my own understanding of what this condition really is. BTW, the stress in my life overall is doing great, overall, I would say that my stressors are lessening in life overall. I was JUST CLEARED by one of the top neuros in the field for ALS less than two weeks ago. It makes ZERO logical sense that this would be something sinister, yet this particular symptom has me taking a couple steps backwards. Sorry for the rant, but COME ON. There is not a logical explanation for this that I can comprehend at this time. 
Greg, I love ya buddy but I'm gonna have to be tough with this reply.Did you really just ask a forum full of twitchers if anyone can understand a bicep twitch that has lasted for only 6 days? I've had (and currently have) hotspots that have lasted for MONTHS. 6 days? I currently have 4 areas that have not stopped twitching in months. Everytime I look at them, they are firing away. I've had this happen previously and eventually they did fizzle out. Yours will too. After your last two visits, you know you don't have anything nasty going on. This is classis BFS. It sucks, but its nothing more than that. -Matt
That's as tough as you can get? Come on, that is mild compared to the Jet. I do appreciate your popping in here to comment, thank you. I am not in a full relapse, I still think this is not ALS, I just am wondering how many can truly, truly relate to the graphic explanation that I gave above. I have one so far. Maybe I am just trying to gauge how close to 'par for the course' this is. Because I am hitting triple bogeys right now.
BlueWolf92
Well-known member
Greg, I love you more than Matt, so I am going to give you empathetic love. I have had constant buzzing behind my left knee since this started almost 6 months ago. I think buzzes are probably the same as very, very fine twitches that happen continuously making it feel more like a "buzz". To me this kind of twitch is in some ways scarier than the bigger ones you can see - focal or not! To all those we have to make ourselves say hakuna matata. Love ya! the Vickster
Greg,I'm scared of jinxing myself, but mine finally went away, after an entire day of twitching so hard, it was moving my muscle. It was in a really weird spot on my bicep (I think it would be considered my bicep). My husband saw and felt it too and was also kind of perplexed by it (although he had spent the day with his eye twitching, so he was a little more empathetic than normal).Last night, we went out, and I had a few drinks and an Ambien to sleep, and I think that made it go away. Note to everyone: this is not my advice of how to get rid of a hotspot, I just needed to get my mind off of it because I was going crazy.Last time I had a major hot spot experience, I went almost a week with a huge twitch in my thigh. I finally succumbed and took a xanax one night and it went away the next morning. So, 7 days is the maximum for me, but as you know from everyone on this board, on average, it can take weeks to get rid of a hotspot.They are not only anxiety-provoking, because they're so strong, stubborn and persistent. You can't HELP but look at them and wonder if something is wrong with you. I spent the entire day doing that yesterday, and I had previously been let's say a 2 out of 10 with my anxiety over my twitching. Yesterday it was more like an 8.Hang in there my friend. I promise you it will eventually go away, even though it really doesn't seem like it now.Mitra
DesertKnight
Well-known member
Greg, I'm now on day three of the twitch in my left hand under my thumb that never stops. This is a spot that has rarely, if ever twitched the entire nine months I've had this. I don't know why it decided to start up or when it will end, but the reality is I have no control of it and it really doesn't matter. I also have the buzzing (as mentioned in a previous reply) that has been going on for months in my right leg. There is a spot in my thigh that vibrates and buzzes all day every day, as it has the past 3 months or so. You can't let this stuff get to you.Frances
BlueWolf92
Well-known member
this stuff can drive a sane man crazy. A hotspot should be something sexually delightful. Instead with twitching it is something so annoying that it feels like water torture... Reaching out, questioning, wondering, just venting sometimes is all we CAN do. Everyone deals with this the best way they can and there is no 100% right or wrong way, but as my teenage niece (wise beyond her years) always says to me - whatever gets you through the night, Aunt Vicki. Sometimes that might be posting a post that seems inane but still you need to say it...
My left knee (the muscles around the knee actually) has been twitching like crazy, literally nonstop, these last couple of days. Yesterday it was the whole calf that was twitching and before going to bed the twitching around the knee was so intense that it took me a very very long time to fall asleep. This morning when I woke up it was still twitching intensively... I HATE it!
A six day continuous bicep twitch? Hahahaha. If I had time to visit the chat site I'd say f-ck you Greg. You tell me why your little six day bicep twitch is ANY worse or different from things I've experienced many times over a period of 7 years. For example, a few months ago, for the first time I had a continuous pulling spasm with varying degrees of tightness in my left upper abdominal area. Same spot, only on one side, day and night. It lasted two full months before eventually stopping. I'd take a bicep twitch any day over that. I've also had very fine continuous twitching (the "scary" looking kind) in various muscles of my hand lasting weeks or months at a time, day and night. There were many more, including moving fingers and forearm hotspots, but these are just examples of what is "par for the course." How are these different from your bicep hot spot, except different locations and possibly different firing frequency or magnitude? They are not. And you were cleared by a top ALS guy, and I never even had an EMG. So, stop being a big baby and get a grip, OK? 
BTW, I'm currently experiencing a second complete remission of symptoms. Enjoying it while it lasts. Catch you later. 
Cheers,Bill
BTW, I'm currently experiencing a second complete remission of symptoms. Enjoying it while it lasts. Catch you later. Cheers,Bill