View Full Version : quivering tongue
The tip of my tongue quivers all the time. I can see the reflection of light shimmering in on as it minutely trembles. It's like individual muscle fibres are fibrillating. Everything I read about this says its pathological and means the muscle is denervating. Anyone else have this?
Why are you self-examining something as benign as this? I'm willing to wager everyone, if they search and look hard enough, we can find unusual aspects of themselves. Those with HA tend to find fault and worry in everything.
Positive thoughts
I thought you wanted things to change, starting from now? Why are you doing this to yourself and what response do you expect to get from the forum? Sorry to be blunt but what is the point?
I know, I'm reassurance-seeking :(
I guess I was hoping someone was going to tell me it's normal, that they have it to0. I woke this morning in literal panic over it and haven't been able to calm myself down. I hate this.
---------- Post added at 12:19 ---------- Previous post was at 12:18 ----------
I cannot accept it's benign. It contradicts everything I've read
Why are you reading stuff about quivering tongues? I'm sure all our tongues would quiver if we scrutinised them constantly? I'm sorry but it's just a recipe for panic and illogical thoughts. Please help yourself and stop monitoring things you don't need to..?
ServerError
26-08-17, 21:52
Either get help with anxiety or ruin your life.
Those are your choices. What do you even think is wrong?
If you think I'm being mean, ask yourself how tip-toey niceness helps.
What do you even think is wrong?
The beginning of bulbar ALS
Even if we told you it's normal, you'd still be worried. We told you it was normal over and over again on the last threads.
The only way this goes away is when you choose to fight back against the cycle and do something about the anxiety.
ServerError
26-08-17, 22:56
The beginning of bulbar ALS
If you really think that, why are you asking a bunch of anxiety sufferers without medical training on the internet?
And if you say the answer is because you want reassurance, ask yourself what the fact you think there's scope for reassurance means.
Yes, but I can't tell whether that's denial/wishful thinking or whether there's legitimately a chance I don't have it.
ServerError
26-08-17, 23:07
I'm just an ordinary guy from an average town in northern England with no medical training, but as far as I'm concerned, you don't have bulbar-onset ALS, or any other form of this admittedly cruel disease.
Yes, but I can't tell whether that's denial/wishful thinking or whether there's legitimately a chance I don't have it.
That's what I call the anxiety fog. The chances of you have it are slim to none. The chances of anyone having it are slim to none. It's extremely rare, and deep down you know that, but the anxiety keeps saying "What if", and unfortunately you listen to it instead of using the rational part of your brain. You'll keep listening to it until you decide to make an effort to stop.
But what if I stop, and I was right all along? For some reason, that's what keeps tripping me up.
Thanks for being patient with me. I can tell you've been here.
Yep, I've been there. Not with HA, but with my PTSD. Real low. It doesn't matter that you're worried about though. Once you're worried about something, and in the anxiety fog, it's all the same.
Well, when you next go to the doc, you say, "Hey, do I have anything that would make you suspect ALS?"
Then is my guess, is that the doc will check you out and say, "No."
Then you say, "You know doc, my anxiety has been horrible lately. Can you give me a thorough check to make sure I don't have anything physically causing it?"
So then they'll probably check your blood and thyroid, just to make sure, and if everything comes back clean, then you start the hard work of fighting these thoughts.
But what if I stop, and I was right all along?
Then it wouldn't matter regardless of what you thought. There's no satisfaction in being right about being diagnosed with an always fatal disease. That being said, I won't hold my breath waiting for you to say "Told ya so". I'll save those for myself ;)
Positive thoughts
I would love nothing more than for you to be able to say that to me
MyNameIsTerry
27-08-17, 03:33
But what if I stop, and I was right all along? For some reason, that's what keeps tripping me up.
Thanks for being patient with me. I can tell you've been here.
What if you're wrong?
What if you don't have ALS?
What if you never get ALS in your life time?
What if your symptoms are anxiety?
I would love nothing more than for you to be able to say that to me
There's a member of the forum with what I would say had a legendary posting pattern. This member actually said to me in response to one of my "cyberslap upside the head" posts... "You'll be sorry when I come back and say it's cancer!" Of course it didn't happen. Everyone here knew and all the doctors and tests affirmed it. As a positive, she finally went to the doctor and asked for help with her anxiety. Her doctor prescribed meds and for all intents and purposes, she's doing quite well! It's amazing actually. Other than a blip here and again, she's well on the way back to living and enjoying life :)
Of the tens of thousand of posts and fears I've read about here, I know of two that actually had something going on. Both are doing fine. Point is, this is a similar pattern to all the other posts. To you, it feels real. Your "perceptions" are your reality. The reality everyone else sees is different.
Positive thoughts
Midnight-mouse
27-08-17, 08:45
Have you ever tried to hold your hand completely still while you watch it? We are constantly in motion one way or another it's part of life. I don't think my tongue is still either but if I focus on it, it definitely isn't.
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MyNameIsTerry
27-08-17, 09:05
Have you ever tried to hold your hand completely still while you watch it? We are constantly in motion one way or another it's part of life. I don't think my tongue is still either but if I focus on it, it definitely isn't.
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People used to call anxiety "nerves" and there is the image of old people with shaky hands.
When we suffer shock, we can shake. It's just how the body reacts at a chemical level. So, why can't a tongue be shaky in a "nervousness" condition? :winks:
Midnight-mouse
27-08-17, 09:42
People used to call anxiety "nerves" and there is the image of old people with shaky hands.
When we suffer shock, we can shake. It's just how the body reacts at a chemical level. So, why can't a tongue be shaky in a "nervousness" condition? :winks:
Definitely agree here, plus being hyper aware of our bodies makes it even more obvious. Just one of those things.
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If it were just a tremor, like you get in your hand when nervous, I wouldn't be worried. But I'm concerned these are fibrillations. They are constant, and it literally looks like each molecule is moving independently (the tongue is a skinless muscle, so it's the only place were you can see fibs). That's what scares me.
MyNameIsTerry
27-08-17, 16:12
If it were just a tremor, like you get in your hand when nervous, I wouldn't be worried. But I'm concerned these are fibrillations. They are constant, and it literally looks like each molecule is moving independently (the tongue is a skinless muscle, so it's the only place were you can see fibs). That's what scares me.
On another ALS worrier's thread they would be saying shaky hands. Or maybe Parkinson's.
I had an acute dystonic reaction to a neuroleptic once (Reglan) and ended up in the ER. They had to shoot me up with an anti-Parkinson's med. But apparently a couple of Benedryl will do in a pinch.The struggle is real
You have acquired far too much medical information along your HA marathon which isn't doing you any favours because you can't apply it appropriately.
Fight back, mel. You can do it.
What a goofy thread. First of all, did you just make up "fibrillating?" You can't see fibrillations, you know this right? Second, what in God's name are you doing that you're noticing the light "shimmer" off your tongue. I'm sorry, but thats weird and funny to read.
Long short, you don't have Bulbar. Stop this nonsense.
Actually, tongues are the only place you *can* see fibrillations because the muscle is not covered in skin. :shades: Fibs happen when the muscle is denervating. Fasciculations happen when the muscle is trying to reenvervate. I am going to go walk in the woods now ...
ServerError
27-08-17, 20:00
What would you like us to say about all of this, melfish?
I am going to go walk in the woods now ...
What would you like us to say about all of this, melfish?
Mind the bears? :shrug:
I want to know if any of you have it too
ServerError
27-08-17, 20:21
I've had quivering sensations in my tongue before, yes. I know it happens because it amuses me and I quite like it.
But mostly I don't pay attention to my tongue and what it does.
I want to know if any of you have it too
Would you stop worrying if we said we all did? Would you believe us?
ServerError
27-08-17, 21:47
Why would you answer a question with a question?
It's common for people with anxiety to get the response they want, or one that would seem reassuring, but then not be able to accept. So would you believe us if we told you we get this?
Do you honestly believe you have bulbar-onset ALS?
Actually, tongues are the only place you *can* see fibrillations because the muscle is not covered in skin. :shades: Fibs happen when the muscle is denervating. Fasciculations happen when the muscle is trying to reenvervate. I am going to go walk in the woods now ...
Source?
---------- Post added at 22:49 ---------- Previous post was at 22:47 ----------
Twitching is seldom, if ever, the beginning of ALS as an isolated symptom. If you don't have slurred speech, you do not have Bulbar ALS. Your insistence is embarrassing.
Yes, you're right. And having rabies after not being bitten by a bat isn't at all embarrassing :/
MyNameIsTerry
28-08-17, 02:28
Yes, you're right. And having rabies after not being bitten by a bat isn't at all embarrassing :/
The more you tend to learn about anxiety, the less any of it becomes embarrassing as you accept it is just part of what we go through.
Is a fake cancer because of bruising, a headache or a lump anymore rational than a bat flying over your head and worrying about rabies? Not to me.
As a Magical Thinking person, I've had many weird ones that you guys on here do without batting an eyelid every day...just as I think "meh, who cares" when I see a lump.
You learn a lot from others in these places. I'm not sure anything involved in someone's anxiety on here affects me anymore. It's complex stuff and we suffer in different ways but it is about education.
Everyone on here has their past, present & future irrational issues...those that don't don't come here. :winks:
Thanks, everyone. I know I sound like a complete ass, but it's so very real to me, and terrifying. I keep thinking to myself, if only I don't have it, everything will be great and I'll have a new-found lease on life et cetera. Which if of course nonsense if I don't deal with my anxiety. Thanks again for the kick in the butt ;)
Hey melfish
I havent been active here the past couple of weeks but my tongue quivers a LOT as soon as I move it out a little bit. It even moves quite a bit at rest. I was worried about that being fasciculations but my dr and the online drs I chatted with (I asked as many people as I could) assured me that they were normal tongue movements. The movements at rest were just due to me not being able to relax my tongue completely (probably from anxiety)
Also its important to remember that the tongue is a muscle too. If you twitch elsewhere in your body theres no reason to think its worse to twitch on your tongue! That is a fact
MyNameIsTerry
28-08-17, 07:15
Hey melfish
I havent been active here the past couple of weeks but my tongue quivers a LOT as soon as I move it out a little bit. It even moves quite a bit at rest. I was worried about that being fasciculations but my dr and the online drs I chatted with (I asked as many people as I could) assured me that they were normal tongue movements. The movements at rest were just due to me not being able to relax my tongue completely (probably from anxiety)
Also its important to remember that the tongue is a muscle too. If you twitch elsewhere in your body theres no reason to think its worse to twitch on your tongue! That is a fact
Remember Mpeckish posting that video of his quivering tongue? And his neuro exam was an all clear. :winks:
Thanks, everyone. I know I sound like a complete ass, but it's so very real to me, and terrifying. I keep thinking to myself, if only I don't have it, everything will be great and I'll have a new-found lease on life et cetera. Which if of course nonsense if I don't deal with my anxiety. Thanks again for the kick in the butt ;)
We all know how real physical symptoms can be and how incredible it is to believe that they are psychosomatic but would you really be convinced if 100% of people on here offered you reassurance that their tongues quivered too? I don't think so and even if you had some respite you would focus on another symptom related to this rare neurological disease pretty soon. I know how horrible it is to be constantly fighting an internal war with symptoms but you know how pointless reassurance-seeking on here is and those of us who have managed to put some sort of a lid on HA are only trying to guide you in the right direction.
I know how horrible it is to be constantly fighting an internal war with symptoms but you know how pointless reassurance-seeking on here is and those of us who have managed to put some sort of a lid on HA are only trying to guide you in the right direction.
Brilliant statement. When you have fellow sufferers, not just those who have moved in the healing direction but also those in the midst of their own struggles all telling you the same thing, take notice and take it to heart.
Positive thoughts
Remember Mpeckish posting that video of his quivering tongue? And his neuro exam was an all clear. :winks:
My tongue quivered WAY more than mpeckich's and I was assured by several doctors that it was completely ordinary.
It was super obvious to them too
I'm talking about tiny quivery movements on the edge and tip of my tongue 24/7 more than those large movements all over. They kind of freaked me out because I read they were fibrillations. In any case, this has been going on 3.5 months now and no-one is telling me I sound drunk, so that's a good thing :D
This is all starting to sound like some drinking game!
Brian needs another martini
MyNameIsTerry
29-08-17, 05:40
I'm not surprised!!!. :biggrin:
http://images.buddytv.com/btv_2_505540869_0_350_10000_-1_/stewie-family-guy-pr.jpg
Thelegend27
29-08-17, 12:11
theres a name for this but i forget what it is, your tongue is a muscle, and alot of people on here suffer from twitching muscles or as you say quivering. The good news is its rarely a symptom of anything serious to have twitching muscles. if its causing you a lot of stress see your doctor.
I'm not surprised!!!. :biggrin:
:roflmao:
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Legend, maybe you're thinking of benign fasciculation syndrome? Thing is, I don't twtich much anywhere else. I did show an NP my tongue a while back, and she told me to up my B12. I didn't push for a neuro referral at the time because my ALS fear hadn't yet kicked into overdrive :wacko:
Yep, I started taking a sublingual B12 again (I'd stopped while overseas for a month). My serum levels were in range as per the ER labs done two days prior to the appointment with her, which was a followup. I also resumed taking magnesium.
MyNameIsTerry
30-08-17, 04:44
Magnesium dosing & type are a bit of a minefield and supplement companies wilfully mislead consumers in countries where laws don't specify labelling has to include "elemental" magnesium.
Have you worked out the elemental dosing?
All I know is that certain vitamin deficiencies can cause anxiety or make anxiety a lot worse. One time several years ago, I got that norovirus that causes all of those cruise ship shut downs. Needless to say, I was worshiping the porcelain throne with the double dragon for about a week. I was so dehydrated and malnourished afterwards that my hands and feet became red and itchy and my anxiety shot through the roof. It lasted for a couple of weeks until I got everything straightened out again.
MyNameIsTerry
30-08-17, 05:26
All I know is that certain vitamin deficiencies can cause anxiety or make anxiety a lot worse. One time several years ago, I got that norovirus that causes all of those cruise ship shut downs. Needless to say, I was worshiping the porcelain throne with the double dragon for about a week. I was so dehydrated and malnourished afterwards that my hands and feet became red and itchy and my anxiety shot through the roof. It lasted for a couple of weeks until I got everything straightened out again.
My GF's had that, Vee. She would definitely sympathise with you! She said she lost over a stone in weight the first week. I remember her joking about it as a new diet method.
Certain vitamins also act as carriers for the precursors of neurotransmitters too.
Magnesium dosing & type are a bit of a minefield and supplement companies wilfully mislead consumers in countries where laws don't specify labelling has to include "elemental" magnesium.
Have you worked out the elemental dosing?
Yes, got that figured out. I take magnesium malate by what I believe to be a reputable brand. It says 1250mg on the front label, but works out to be about 425mg of elemental magnesium if you take three pills
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Yes, I have to be careful what supplements I take. Some really ramp up my anxiety, particularly SAM-e. That gives me an instant panic attack. Others bring it down - taurine, magnesium, niacinamide, as well as adaptogens like ashwaghanda and l-theanine. None have been up to the task of combatting this ALS anxiety though. That's going to take some serious brain retraining.
MyNameIsTerry
30-08-17, 15:36
How are you getting to 425mg? Is it something on the label?
The reason I ask is magnesium has a molecular weight of 24.31 daltons whereas magnesium malate has a molecular weight of 156.38 daltons. So, you work out the % by going 24.41/156.38 = 0.155455. Say 16%.
So, for every 100mg of magnesium malate, 16% is elemental magnesium. That puts your 1250mg dose at 194.3183mg.
That's how I've learnt to work it out, if that's wrong please let me know so I can look into why.
I know what you mean about supplements. When I had my breakdown I was using various legal supplements for my weight training. I added something new that was just too strong for me and had a 30 minute adrenaline rush from hell that became my fear of exercise...that I'm still dealing with to a degree now. And it made me terrified of taking anything, even vitamin C which is as safe as you can get! I even stopped taking my asthma meds and ended up having a mild asthma attack. And only exposure gets you past these types of fears so it's hard going.
Taurine is tricky, it's used to much in the body it can end up going anywhere but the brain. Magnesium Taurate is supposed to be good at getting past that problem but the supplements have a habit of being very high in taurine vs elemental magnesium.
How was ashwaghanda? I want to give that a go.
NAC looks good too, there are studies showing it can work in hair pulling which is debated as close to OCD...although there is a division between the APA and WHO on that one.
Inositol is another one.
I've not tried SAM-e, another member on here said it helped with their their SAD. Maybe it's too activating?
Interesting thing about taurine is they put it in energy drinks to halt the stimulation form going too far.
Terry,I met Ashwaganda at the Hari Krishna Sunday banquet :roflmao:
and was tongue tied.( sorry off topic but had to have a laugh).
MyNameIsTerry
31-08-17, 01:37
Terry,I met Ashwaganda at the Hari Krishna Sunday banquet :roflmao:
and was tongue tied.( sorry off topic but had to have a laugh).
That seems a strange place to go on the pull, Lola :winks::D Just imagine what he can do with his tongue :roflmao:
Terry, I take inositol and NAC too. I lift weights, so I take a bunch of supplements.
Re the magnesium, I got the 425mg off the back of the bottle. Mind, that's for THREE pills.
The ashwaghanda seems to take the edge off. I buy the powder in bulk from India. (At least I hope that's what I'm buying :scared15:) I mix it up with inositol and creatine and collagen peptides in the morning and it's pretty relaxing ... for about an hour.
I don't take any supplements anymore. Just when I was recovering from the double dragon. Now it's just plain, good 'ole Lexapro for me.
Your experience with the 30-min adrenaline rush sounds just like what happens whenever I've tried SAM-e. Horrible. Doom. Panic. Taking niacinamide apparently counteracts that, but I'm not game to try again
---------- Post added at 21:59 ---------- Previous post was at 21:57 ----------
I don't take any supplements anymore. Just when I was recovering from the double dragon. Now it's just plain, good 'ole Lexapro for me.
Vee, yes, I'm considering taking a break from all of it, and then trying Zoloft so I can clearly assess it without interference
---------- Post added at 22:01 ---------- Previous post was at 21:59 ----------
Now if you'll excuse me, I have to get back to tenting my cheeks and other tongue gymnastics. The self-testing, it never ends ...
Don't make me smack you, Mel :lac:
Don't make me smack you, Mel :lac:
If it'll knock some sense into me, I'll take it
You know what makes sense, Mel..
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