Bulbar ALS?

[WorryRaptor]

Twitching on its own is not indicative of ALS.

The temporalis muscle is notoriously prone to twitching because of simple things like jaw tension (you won't even know you have this half the time), or general muscle tension in your face and head. Guess what causes that kind of tension? Anxiety and stress. I would imagine you're experiencing both of those in shovelfuls right now.

You might even be grinding your teeth in your sleep too, or have TMJ, which could also cause ongoing twitches. Even neck tension can cause a domino effect and cause the facial muscles to become overly tense.

Try gently massaging your jaw and face, and use heat on it to relax the muscles. You may not even feel overt tension in your face or neck, so don't panic if you're now thinking "but my face and neck don't feel tense at all, it's DEFINITELY the scary thing". Tension in those areas can actually be quite subtle. Take it from somebody who had chronic eyelid and jaw twitches due to an irritated disc in my neck. I didn't feel the tension at all at the time. But once I started to work on my face and neck, the twitching subsided.

Edit - You could also try taking some magnesium to see if it helps!

[olivia0703]

My husband has told me I sometimes grind in my sleep and my dentist can see this from teeth wear. I also clench during the day sometimes too. I have had a persistent, though not constant, eyelid twitch on the same side in the past. (And yet my brain goes but, but, but ...)

[WorryRaptor]

My husband has told me I sometimes grind in my sleep and my dentist can see this from teeth wear. I also clench during the day sometimes too

Sounds like the culprit then

And yet my brain goes but, but, but ...

Anxiety loves to do that.

[olivia0703]

Thanks so much to you all for commenting. It does help, even though my mind won't accept it for long before reverting to the Fear

[ankietyjoe]

I just need something for my brain to grab on to, some hope. Then maybe I can stop googling.

Wrong

Stopping the Googling comes first.

There's a reason you're ignoring advice and only engaging with symptom talk, and that is why you're still suffering.

[Mocadona]

Wrong

Stopping the Googling comes first.

There's a reason you're ignoring advice and only engaging with symptom talk, and that is why you're still suffering.

This is 100% the answer. I was like Olivia, constantly looking at symptoms, reading real life stories and lurking on the ALS forums looking for reassurance but getting the opposite. As soon as I forced myself to not do those things my anxiety lessened within a couple of days. Literally. You have to trust us when we say these things as we've been there.

We aren't doctors so can't reassure you medically, but can certainly tell you what helped us with anxiety.

[kyllikki]

Nope, I'm American. Just a fan of quasi-obscure Finnish cultural references.

I'm younger than you, but I too have persistent facial twitching -- and real, neurologist-diagnosed palsy in four of the paired, small muscles surrounding my eyes! But what the Sticky says on this turns out to really, really, truly be true -- if something is effecting your NON-bulbar cranial nerves, that's a major indicator that whatever is wrong is NOT ALS. Remember! "Bulbar" = last 4, or "lowest", cranial nerves ONLY! Literally these 4 originate from the part of the brainstem that looks like a "bulb" - hence, the name. Anything more anterior, like the Facial and Trigeminal nerves, are NOT bulbar, literally by definition. You keep asking for hope, and yet it doesn't get more clear cut than this!!!!

Also, the Facial and Trigeminal nerves are NOTORIOUS for being irritated by stuff -- normal viruses, stress, inflammation, dentist visits, screens, TMJ, etc. Again, I could give you some reasons why, but I really doubt you're going to absorb what I am saying until you deal with the HA panic first

Take me for an example of how easy it is to mess up your NON-Bulbar cranial nerves: my stupid thyroid was overactive at some point in the past 8 years; chemically, it messed up my body, which led to my body's immune system attacking my muscles -- starting with the smallest ones closest to my thyroid, e.g. my eyes. Because of extremely subtle changes in my eyes being able to line up, I started to distort my neck, forehead, and cheek muscles to try to keep the world in focus. This, in turn, put a ton of strain on my jaw muscles, causing me to "chew" AND thrust my tongue in my sleep, as well as press my tongue into my teeth habitually during the day. This, in turn, has messed up my bite, which has worsened my existing TMJ, which has given me terrible tinnitus on and off for an entire year. Seriously! All that from my stupid hormones!!!

Is any of this ALS? NO.
Is it annoying as all get out? YES!
Am I trying to fix it, slowly, and with judicious use of medical appointments (e.g. only following up when my doctor tells me to?!) YES!

Do I think something is wrong with you? YES!
Do I think it's ALS, or anything serious? NO!
Is it still worth trying to figure out what it is / fix it? YES!
BUT... Only after you treat your HA!!!!

Much love sent to you, you can do this.

[olivia0703]

Thanks so much for your thoughtful reply, kyllikki (I thought I typed Finnish, but I typed Danish and those language are nothing alike). I am going to return to it every time I get the urge to google/browse forums/read IG accounts today. It's weird, when I try to set boundaries like this for myself or firmly say no to the thoughts instead of indulging them, I feel like I am "jinxing" myself or tempting fate and will look foolish later on

[olivia0703]

But the sticky doesn't say anything about non-bulbar nerve involvement pointing away from ALS, does it?

[Mocadona]

But the sticky doesn't say anything about non-bulbar nerve involvement pointing away from ALS, does it?

Now this is classic HA! The sticky is both 100% wrong or 100% correct depending on what suits to keep the train going in your mind. Please don't take that the wrong way, I'm not trying to have a go, I just see it because I also twist things in my mind constantly.

Kyllikki has written an absolutely fantastic post, (and I'll have to take back my comment about us not being able to medically reassure you as a result!) it explains your symptoms can't be bulbar onset ALS, and also shows that there can be hundreds of more benign reasons for symptoms, as thankfully was the case for her.

I struggle with the jinxing aspect too so I can relate, you just need to dip your toe in the water and go one day, then two...

You likely now have the best reassurance you can get, so hopefully you can use it to push on! You can do it.