Jerry,I don't think you caught the sarcasm in my original post. Night tremors isn't a medical term that goes along with your fears. Heck, I don't know that it is medical term/symptom period. It sounds like you have plain jane tremors. Which seems like 80% of the people on this forum have or have had. Including myself currently. So, I'm not seeing why you think this is so special.Stop stressing about this symptom, it is just creating a self fullfilling prophecy. There isn't a perfectly clear reason for everything. Everyone reacts differently to some degree. Just like if you and I both caught the same strain of flu.....we would both experience it differently. And if I asked my doctor why Jerry wasn't as ill as I was he wouldn't be able to pinpoint some specific reason. That is healthcare.
Learning Differences: My Story
- Thread starter jerryTwo
- Start date
Ok I understand you now. Yes, it is wierd. The twitches together with this scares me more. Yesterday I had very little twitching, like very little during the day. I was feeling better but today in the morning they started again.But I see it is not really something in between, if 2 comes the others come also on different legs/hands spots. If the day is twitch better there are very few. What I want to say I've had about 20 since I woke up and thia I think necessary mean I will have a lot of them during the day. It is somehow connected to the day.PS - I have took one sedative in the day yesterday, maybe that is the reason why there were less twitches although I think not. Today started in the morning (maybe before I don't know when I slept) but yesterday didn't. And I took sedative aroudn 10 AM.I guess you will tell me that this "group day attacks" are more common in BFS than ALS? Some days a little better than the others.
christinasgirl123
Well-known member
With BFS, my nights are always kind of a "reset button", each day is different. There are days I wake up I can hardly move from pain, there are others that I hardly have any pain. I have days when I hardly twitch at all, and others that I twitch like hell. There are days I wake up with tremors so bad that I almost don't dare walking, on others I have just some internal vibration in my shoulder and some finger tremor. When I woke up this mornin, I noticeb that I was jerking a lot. Not only fingers, nut a whole arm or foot of even a whole side of my body would get these "thunderstrikes". I haven't had them for a while, now they're back. But today I don't have much handpain......It:s weird and it changes from day to day, with weather changes, hormonal changes , stress changes or just for no reason I am able to figure out. In ALS, things do not change. They get bad and then they only get worse. (and none of these things is a symptom for ALSat all....just to mention that one).
Than Chrissi. I guess taking sedatives doesn't stop twitches in ALS.I think even if it is "nothing" or nothing fatal at least I think I may get something good of out it. I was allways a worrier for small things. I think this time really get to me that there are people who have ALS and xy and xz and name any other real fatal problem, there are people who live in terrible hunger and other problems that are considered life essential. To make a caricature, if I get a cold meal in restaurant, I should not even blink. It is nothing. It is not worth my attention (ok, I don't go there any more than). If I bump a car and I am ok and my wife is Ok, I should not get upset. It is really nothing in life copared to some other problems.
christinasgirl123
Well-known member
This isabsolutely right. But I also think that the way we react to BFS shows us, that there's something we should do with our anxiety and stress. I am starting psychotherapie therefore.
I also have appointment to the neuro psychiatrist in 14 days. Is seems so faaaaarrrr awayyy 
Every twitch is getting part of my life out of me and every night shake also. The most unusable and objectively bothering is my left hand that is in great pain if I do anything with it, concrete pain in same spots. But believe me or not, this bothers me much less than all the "nerve problems" I have. That never scared me so much. But don't say never I guess...
Every twitch is getting part of my life out of me and every night shake also. The most unusable and objectively bothering is my left hand that is in great pain if I do anything with it, concrete pain in same spots. But believe me or not, this bothers me much less than all the "nerve problems" I have. That never scared me so much. But don't say never I guess...christinasgirl123
Well-known member
I have quite constant pain spots in my hands too: the area between thumb and pointer, the area where the thumb it sonnected to the wrist and the area below the pinky....
Do you have pain sports on palpalation of this areas or you have hard time lifting with the painfull hand. I mean do you hurt in rest or only when the muscles are tense to hold/grasp/pressing something?PS - Did I get the record in any of this sad facts on this board:1. The most anxious person on the board?2. The most written posts in 8 days.3. The longest topic in the shortest time? 
Last week I am sooo sleepy during the day and exhausted, like that I can not get rest at night. Well, if one is constantly waking because of tremor I guess this is "normal" then. It seems it really doesn't matter how long we sleep but HOW we sleep. I can not believe I have developed such a great fatigue in one week. (The truth is I've had such burned out symptoms for years sometimes, I even called them to my self like I have "fibro" symptoms again (tiredness, eye pain and redness in the morning I felt like a truck would go over me etc., headache since morning).But I really haven't experienced any headache this 10 days, which I do most of the time. Even colon is "ok", working normally. I guess mind shifted to neuro
Last week I am sooo sleepy during the day and exhausted, like that I can not get rest at night. Well, if one is constantly waking because of tremor I guess this is "normal" then. It seems it really doesn't matter how long we sleep but HOW we sleep. I can not believe I have developed such a great fatigue in one week. (The truth is I've had such burned out symptoms for years sometimes, I even called them to my self like I have "fibro" symptoms again (tiredness, eye pain and redness in the morning I felt like a truck would go over me etc., headache since morning).But I really haven't experienced any headache this 10 days, which I do most of the time. Even colon is "ok", working normally. I guess mind shifted to neuro christinasgirl123
Well-known member
Hi Jerry,these spots hurt alle the time, but more on palpation and when gripping. Regarding the time you are into this not (not too long), and the fact that you do not insist in having ALS no matter what others tell you, makes you lose any chance of winning the "most anxious user's award". I even think that you are doing quite fine, because you actually noticed that you need help with your anxuiety. That is a big step. But I think you have quite good chances for the "most written words in 8 days-reward
. 
. Hm, fair enough christinasgirl123... I am trying to be funny, I don't feel too good...I do fear I have ALS still, I do not insist that of course (does anybody?) It makes a small possibility I guess, but I fear to dead that this small possibility happend to me. But no, I do not insist, I have not called and made funeral arangements yet. I still hope to live, I am just terrieied of ALS with every twitch in my body But yes, I do deserve the most written words per minute award I guess 
And I really hope I'll lnot get the money from the member who promised me 100$ in 6 months if I have ALS. I really DON'T WANT THIS MONEY!!! 
:crying:
But yes, I do deserve the most written words per minute award I guess And I really hope I'll lnot get the money from the member who promised me 100$ in 6 months if I have ALS. I really DON'T WANT THIS MONEY!!! :crying:GlitterFountain
Active member
Hi Jerry,I know what it is like to be afraid to go to sleep at night. I experienced my arm shaking and waking me up many times. I've also been awakened by toes, fingers moving, etc. It is very scary . The good news is that I do not have ALS or anything scary. I had several neuros tell me ALS does not present like that. Still, I would go to a neuro for a full work-up (EMG, EEG, MRI) as well as seeing the rheumatologist. After all my tests were deemed normal, I was able to get medication to help with some of the symptoms and, 2 years later, I am slowly tapering off them. Were you taking any kind of medication before all this started? The neuros think my symptoms were caused from the abrupt withdrawal of an herbal supplement that works on GABA. I basically went through a drug withdrawal similar to someone who stops benzodiazepines or alcohol cold turkey. But, this is just a theory.Go get your tests done and meditate when you can't sleep. Being stressed prevents your body from healing. Hope this helps!Terri
THanx for your story. No, I was not on any medication before. None!What scares me most is that EVERY NIGHT it is the same with tremors. Fasc do vary from day to day, but the tremor is ALLWAYS there, every night, not a single night goes away. If it would be psychological there would be better and worse night I guess...I am seeing a rheumatologist in 13 days, a neuro psychiatrist in 16 days. I will wait for neuro longer, it is a long line there (few months I guess for all the exams I need). I am glad to get to the psychiatrist sooner, becuse I won't last for few months being so scared to go to sleep and getting same pattern each night, turning around trying to stop the tremor and then even more twitching starts (( Last few night were at least better in the respoct that I didn't have any hand numbness this few days now and I didn't have a "stuck finger" symptom. I don't say it will not happen again, but for 2 days I "only" had tremor and twitches.As tremor is 4 weeks every day (3 weeks was bad, but now I am in a panic state it is actually much worse, I wake up like I wasn't sleeping at all night)
(( Last few night were at least better in the respoct that I didn't have any hand numbness this few days now and I didn't have a "stuck finger" symptom. I don't say it will not happen again, but for 2 days I "only" had tremor and twitches.As tremor is 4 weeks every day (3 weeks was bad, but now I am in a panic state it is actually much worse, I wake up like I wasn't sleeping at all night) I started taking calcium/magnesium supplements a week ago for the twitching. That didn't help of couse much. I presume that would be the easy way out that most of you tried already?And yes, I do have to ask... even if Magnesium doesn't help, it is no sign that it is ALS?Please bear with me, I have never been to neuro before and I didn't have any exams yet, just 2 puzzled general practitioners
Jerry,I haven't found any posts here so far that says magnesium supplementation helps. I was very hopeful once I read about magnesium and started taking it, but I think it has failed most of us in reducing twitching. However, don't stop, because your body needs magnesium, and it is supposed to help with anxiety (which you seem to have). Most people have magnesium deficiency. Magnesium is good for so many things. Be sure you're balancing magnesium supplementation with calcium as they need each other to work properly.Mitra
I wonder if St. John's wort could help here or make even more tremor at night...WindyCityGentleman
Well-known member
It can help with your moods. I wouldn't be worry about more twitching from it.
Hi, it's me again.I seem to be getting nevrological appointment next week and I feel like this is my death sentance. The "condition" is really unchanged, but I have some findings, can anybody relate:1. The "big" twitches like the one in my finger and in my arm, the ones that lasted for a minute if I didn't stop them, are now more rare. Instead I get tens of short lived (mostly single twitches), one in the arm, the next moment in the leg etc. Some positions are the same some change. They are not so persistent but they are many.1a. It really seemed that my twitches were started in ONE day. Like I didn't have ANY a day before and I had MANY the next day. It was not like one twitch one day, week after 2 twitches etc. It was like somebody pressed the ON switch.2. I was so tense yesterday becaue of all this I run for 4 km and biked for 35 km, mostly in the city but some also on the hill. I noticed last night when I couldn't sleep good that I had many more twitches in the legs and in the rest of the body also. Is it possible that there could be more because of physical activity? I have never noticed this even if I was more active but I guess a twitch couldn't wake me up and now it can also.3. The hand tremor is more and more wierd. I am still not 100% but last night I didn't sleep well, not even first 5 hours like usually. The hands didn't tremble... until 5 AM. They seem to tremble only the morning part of the night. That doesn't make any sense, does it? My last 2 fingers were also numb in the morning but after I woke up I could use them again soon without really doing anything. It is like some seizure or what 4. Everybody is conforting me in a sense that I couldn't run 8 km if I had ASL. But ALS starts in one limb and that could be my hand. I guess first few months ALS patient could run if the disease just started.I am scared to death what will neuro tell me to all this. I only see the death sentance at this moment. I can not tremble every night without something serious, that would go against the law of physic and chemistry.One question though: I got scared off bcause I read something called "clonus" is associative of ALS. I don't know so good English to understand the term. Can my night tremor be clonus?
4. Everybody is conforting me in a sense that I couldn't run 8 km if I had ASL. But ALS starts in one limb and that could be my hand. I guess first few months ALS patient could run if the disease just started.I am scared to death what will neuro tell me to all this. I only see the death sentance at this moment. I can not tremble every night without something serious, that would go against the law of physic and chemistry.One question though: I got scared off bcause I read something called "clonus" is associative of ALS. I don't know so good English to understand the term. Can my night tremor be clonus?