Eyelid twitching?

[Aaron98]

I don't like to attribute everything to AMN, because I know that we can experience symptoms that are completely unrelated to it, BUT...for the past several weeks, my left upper eyelid has been twitching/spasming pretty much nonstop. It ceases for a minute or two if I stretch the lid with my fingers, but then it starts up again. It's gotten pretty frustrating and annoying. Has anyone else experienced this? All of my other spasms are located below the waist, so I wonder whether it really is related to AMN.

[monkeybus]

First AMN symptom I ever had was the left eyelid twitch. Had me worried for several years.. Never saw a doctor about it though.

Looking back, it was around the time my hay fever also hit. Same time of year, i.e. now. Nowadays, both my hay fever and twitchy eye have calmed right down. I get a full-face twitch as well.

I says it is AMN related.

[KazzyALD]

I get it sometimes, but I’ve always put it down to tiredness. It won’t hurt to ask your doctor though.

[monmon]

I also thought it was stress. Three years ago I finally went to see (!) a neuro ophthalmologist and found out it wasn’t the eyelid twitching but the eye bulb itself. Called SOM: Superior Oblique Myokymia - often due to the demyelinating of a cranial nerve (in my case the IV)... fun!

[Aaron98 in reply to monmon]

Thanks to all for your replies. The hay fever thing seems possible - I had pretty bad itchiness with the pollen a week or two ago. But this twitch won't go away, and it's now been over a month.

I'd never heard of Superior Oblique Myokymia, until now. Sounds pretty bad. It looks like I should probably make an appointment with an ophthalmologist soon. What did your doctor recommend that you do about this, monmon?

[monmon in reply to Aaron98]

Yes SOM is a v rare thing. And given how rare ALD also is, not even at Moorfields 👀 hospital (London) they had ever met anyone having both 😒... (then again the damn demyelinating thing common to both conditions... 😬). Luckily in my case Carbamazepine (Tegretol) is calming the twitching down. Also true before 2016 it would remiss by itself for months at the time. 🤞🏻🤞🏻 that’s also your case ☺️

[monkeybus]

My hay fever didn't hit until my mid 30's. It was a hell of a shock, I don't mind telling you. Before the sneezing or the itching was the eyelid twitch, then came the headaches. I'm exaggerating, but was like I had brain cancer or something.

I went from an OTC antihistamine to a prescribed one, to a cortico-steroid. Like I wanted to gouge my eyes out, itchy wasn't the word, nose running like a toilet.

But now, I can get away with nose spray and eye drops. What the hell is going on?

I did consider it was demyelination of my optic nerve, but thank god it wasn't. I'd likely be blind by now if so.

[SongStream]

I've had this condition before but it eventually stopped. I've never even considered it attributed to AMN but governed from the responses, it might be. It is very annoying and one feels self conscious like everyone can see (which they can't). Nevertheless, if it continues, I'd get it looked at. How lucky we are to have this community to share these experiences.

[monkeybus]

When you think about it, isn't a "twitch" really a "spasm"? And a lot of us all know about spasms. I get them in my arms, legs, fingers, stomach, sphincter. Wouldn't surprise me if the eye twitch is yet another one to add to the list.

Anybody else want to weigh in on this?

Incidentally, it was one tiny, lone, eyelid muscle that Stephen Hawking used to communicate. That was all he had left. That or a lower eye muscle.

Last thing he would have needed was a twitch.

[Cherie]

Like Kazzy I occasionally have it and had also put it down to tiredness, but from what you say it could be amn.

[tieaknot]

I get runs of it occasionally. Most recently it lasted about 2 months most of each day. I never attributed it to the ALD. Eventually every time for me it does eventually go away. I found certain medicines seem to make it increase.

Increasing magnesium, higher potassium foods and a multivitamin with a good dose of Bs in there seemed to help. And the more I thought about it, the more it happened! So for me, I think anxiety does play into it.

I was checked at one point for ALS as well because I tend to have runs of fasciculations all over my body at times, but luckily it was diagnosed as BFS (benign fasciculations). Looking back it was much more pronounced when I was taking low dose tramadol for pain as well as some medicines for migraines.

I hope your eyelid gives you a break soon! Even if it turns out not to be anything serious, it’s downright disruptive!

[Aaron98 in reply to tieaknot]

Thank you! I sent my optometrist a message yesterday regarding this.