New Symptom, Need Advice

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saltandpepper

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So I posted a week or so ago for the first time - I had the typical twitching all over from feet to face (and maybe even tongue) but no weakness or slurred speech. Thanks to this community, my anxiety was greatly relieved :). I have been experiencing something new, however, that has me concerned but doesn't seem to be as popular of a topic of this forum (perhaps b/c it's not a symptom of ***?). I have been having trouble falling asleep lately and have been experiencing myoclonic jerks - limbs, face, you name it. This is mainly at night or when I'm very tired. The thing that is concerning me is this involuntary swallow thing that has been happening which in a way feels like one of these jerks as it's involuntary. It happens only about 4 or 5 times a night but it will jolt me awake as I'm about to doze off....then comes the anxiety. Sometimes it's a full swallow and sometimes it's as though the back of my tongue just blocks my airways for a second but it's ALWAYS ONLY when I'm trying to sleep. To take a step back, I've been very worried about bulbar onset for the past two weeks (thought I felt my tongue twitch a couple weeks ago which sent me into a tailspin...which *magically* coincided with the onset of my involuntary swallowing problem) and I have been pretty fixated on swallowing. So far, I've been having no troubles with speech or swallowing except for the feeling of a lump in my throat that comes and goes but I am reasonable enough to know that it's from my GERD or anxiety. I haven't been choking or slurring. But now I'm of course worried that this involuntary swallow is somehow a symptom of bulbar even though I have never read anything about this (they say w/ bulbar presenting symptoms are slurred speech and trouble swallowing). So yes, even though I can be logical about this, clearly my anxiety has taken over! I am fine during the day but am an anxious wreck when I get to bed which I know makes matters worse. I've tried Tylenol PM, Benadryl, Unisom and just once - .25 mg of Xanax. The only thing that has gotten me to sleep is the Xanax but unfortunately that was just a one time thing out of desperation as I"m 7 months pregnant and should not be taking that at all. Anyways, I was just wondering if this sounds like something sinister or if anyone has experienced the same thing. And would an ALS symptom only present itself at night? I am going to the neuro (finally) on Thursday but am desperate for sleep until then! Thanks in advance for listening, the members of this site have been my saving grace these past few weeks!
 
Sounds alot like mine when my twitching started years ago...Anything sinister would be present and clearly present during the day as well, not just at night
 
What you described definitely does not sound like something sinister to me, and you certainly should not be worried about ALS. A lot of people here have experienced similar symptoms as you've described and I think most of them can be attributed to anxiety. I, for one, have had swallowing issues before (day and night) as well as the jerks when trying to sleep. This happened back early on when my anxiety about twitching, etc. was at or near its peak.I think once your anxiety dips a little more that sleep will come easier. Again, I hope you can quell any lingering doubts about ALS which may be fueling your anxiety. There is truly no reason you should be worrying about it.
 
That's a BIG NO on all accounts. The myclonic jerks are strictly from anxiety and lack of rest. If you are having trouble falling asleep you most likely are not sleeping well at night also. This is what happened to me and most others on here. The jerks wake you up and the cycle starts again. Totally normal with anyone including people with out bfs. As for the swallowing. I went throught 4 months of this. I felt like there was something stuck in my throat for 4 months. The tension and stress I put on my body was unreal. I also have GERD, and GERD can absolutely cause swallowing things. Look at it this way you lay down (which is when reflux is the worst), and the acid starts coming up your throat. So your bodies natural reaction is to swallow it back down. Bingo, there is your involuntary swallowing while sleeping. The fact that you are 7 months pregnant only makes that worse. Your stomach is getting pushed up, which pushes the stomach acid up. BTW it does not have to burn when coming up also. You can have "silent reflux." That doesn't burn.And the final nail in this is that with the "sinister" stuff you would have SERIOUS speech problems first. It doesn't start with swallowing. I am 100% positive you are fine, and your neuro will tell you that on Thursday. Then let the fear go, as you need to concentrate on that wonderful life you are bringing into the world!
 
I described the exact same "involuntary swallow" during sleep to a neuro once. She didn't know what I was talking about. She just told me "swallowing is involuntary." You are not alone. I have your exact same sleep symptoms 1 1/2 years in. Nothing sinister has ever been found. I finally had to resort to anti-seizure medicines to help me. Since you are pregnant, I don't know what your doctor will suggest.Feel free to PM me anytime. I know the Hell you are going through. If you ever find out what this is, please let me know.
 
Thanks to all you guys for the support! Glitterwater, I am unfortunately expecting a similar response from my neuro about this involuntary swallowing thing as there doesn't seem to be a lot said on the matter (I guess I should take some comfort in that alone!!)....did the anti-seizure meds help? Also, that is a good point about it being related to reflux/pregnancy/exhaustion. I think I need to take assurances in all of these things and try to unwind a bit...i Know i need to fight to stop the cycle but it's easier than done and lack of sleep does not help with rationality! I should just be happy that I don't have clinical weakness anywhere - body or tongue - and stop trying to find things wrong with me! I just pray that with a (fingers crossed) clean neuro exam Thursday and (if they think necessary) clean EMG, I will be able to put this behind me and find the strength to move on so that I too can start helping people on this forum, rather than the reverse ;).
 
Yes, the anti-seizure medicines help. I would say I am at 70-75% of normal. Still can't nap, though, and still have occasional breakthroughs some nights. But much better. I take Klonopin (close cousin of your Xanax) and Keppra XR--all at bedtime.By the way, my current neuro said he usually sees our symptoms after a pregnancy. That wasn't the case for me, but it might be great news for you! Because he says that form of it almost always goes away eventually. He feels the body sees the baby as an invader--something the immune system has to attack. Maybe after your baby is born, this will all be a distant memory!!Here is an article where he was interviewed for fibromyalgia. He touches on that theory in the article.
 
Hi Naptown, just wanted to drop in and let you know that what you are experiencing at night when you are trying to go to sleep is totally normal, whether it is part of BFS or just Anxiety in general is a toss up, but it is NOT a symptom of ALS or anything sinister I promise you that. To be honest I had these really bad when I was pregnant, then I would continue to have them around the time my monthly was coming, then they came back full force when my BFS started. My doctors all said that hormones can really aggravate them and they called them Sleep Starts. I had them exactly as you described, even where you said it felt like your tongue would fall to the back of your throat and block of your air supply, then I would jerk awake in a panic. Its a horrible feeling and I am so sorry that you are having them this bad. I often would have as many as 6 to 10 sometimes before I could get to sleep, they are horrible.If you would like some tips on how to cope with them or if they dont calm down you are welcome to PM me anytime. But regardless, please dont let these symptoms worry you into thinking you have something more sinister going on, you dont, I promise.Take careRobynn :D)
 
naptown, when did your bfs start? I am also 7 months pregnant. My bfs started in July, 3 months before I became pregnant. It was around the time that I became pregnant that I noticed a huge sudden drop in symptoms. I was at thousands of twitches all over body a day and then all of a sudden(after concieving) They were at hundreds and they seem to keep improving. I was wondering if pregnancy helped, but GlitterFountain, you are saying that your neuro said his theory is that a pregnancy starts it or makes it worse? I hope not, that doesn't seem to be the case with me, and I was so hoping they wouldn't come back full force after the baby is born.
 
hmmm interesting. Maybe pregnancy has nothing to do with it then??? Since mine got better after concieving and yours started while pregnant. Good news for me because i was worried that pregnancy was what was making it better and that they would return full force after the baby is born, maybe that won't be the case then. And possible good news for you too because my symptoms decreased significantly around the 3 month mark (now assuming that pregnancy isn't what caused them to decrease) So maybe around 3 months yours will subside too. I know what helped me was to read all this stuff on this forum especially bfs ina nutshell, I told myself to just believe that it is bfs ( i haven't had an official diagnosis of bfs) This greatly reduced my anxiety, plus I started taking a non habit forming sleep aid that is safe for pregnancy so that I could get normal rest at night. This all really helped with the anxiety, it's really important to keep the anxiety at bay. I am down to hundreds to maybe sometimes even 50 a day now, I have had two 3 day periods where I had only a few and thought that maybe it was gone, but it came back. I usually have hotspots with random twitching all over my body. The last few days it has been random twitching without a significant hotspots. My right eyelid and all my fingers usual always twitch at some point during the day. When this was at it's worst though, it was twitching like every 15-30 seconds all day, EVERYWHERE!!! Private places as well. My whole face too, it was so hard to deal with, I could live the rest of my life at the rate it is now, but if it returns the way it was, I will definately have to be medicated!!! LOL!
 
Well, I just got back from my neuro appointment. The doctor (who couldn't have been any older than me!) did a fairly thorough exam from what I could tell (numerous strength & coordination tests, looked at my tongue resting and extended, checked out the musculature of my limbs, etc...) and basically told me that there is nothing about me that makes her suspect ALS or anything sinister at all. She ordered some additional bloodwork (magnesium and thyroid) and scheduled a follow up in a month to make sure it doesn't get worse (and if it does, to recommend seizure meds that may help). She didn't see the need to do an EMG but if I really wanted one, I could get one at that next appointment. A few days ago, I would have INSISTED she do one then and there, but I've been a bit calmer about this the past few days and starting to think more logically thanks to you all! Seriously. THANK YOU! She confirmed also that my tongue looks fine and not atrophied (the teeth marks had scared me!) and that the jerks at night are NOT even a symptom of ALS and are more than likely just sleep jerks (she called them hynogenic jerks SP?) exacerbated by anxiety and stress...So all in all, I feel a lot better. I am going to try and stay away for a little bit and focus my mind on other things....like the fact that I'm about to be a mom!! I think I may also schedule an appointment with a therapist to help deal w/ some anxiety issues I might have. I mean, a clean neuro exam and no signs of clinical weakness should be enough to ease my mind right!?!?! That's what I am going to keep telling myself :)You guys have been a really huge help so again, thank you so much! I couldn't have gotten through this without a crazed ER visit or total meltdown without you so many thanks! Sincerely,Emily
 

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