Severe tremors and spasms in through face

Hello all,

I have these rather severe episodes where my face shakes violently for a time, it used to be only a second or two but the past few days they have been lasting 30 seconds to 1 minute in total constant spasm/tremor not sure of the right word.

It is starting to worry me given that I have stepped up to 900mg Gabapentin 3x daily and despite being high as a kite it really is not working. The episodes come any time of the day and really destroy my will to live while being very, VERY painful.

Is this typical of TN? I have not had a firm diagnosis of TN yet, got neurologist appointment in 3 weeks time, just am worried it could be something else more serious and am considering getting an emergency doctor appointment in the meantime.

I have been told I should get baclofen (muscle relaxer) or even diazepam, to help with the muscle spams part in particular, any other ideas?

Appreciate any help on this don't know what to do really.

A thought - is coffee a bad idea with this? I drink quite a lot to counteract med-related drowsiness, wonder if this could make it worse given that it increases CNS activity and blood pressure etc

Hi unsure,
First in my experience nothing is typical with TN. We all share similarities but hard to say what’s typical and not. I have never had spasms/tremor in my face. The electric shock pain I experience sometimes feels like a spasm but for me it lasts a few seconds.
If its really worrying you and causing such pain, I would definitely call and see your doctor sooner. There’s no need to suffer and wait for your Neuro appointment.
Your doctor may be able to help and bring you relief with the addition of a med.
Hope you get some relief soon!
((Hugs)) Mimi

Hi Unsure

Do you have the tremors all over your face or mostly on the TN side? I have ATN and when I have been doing too much, especially traveling in the car, running errands, talking a lot etc. I get spasms on my TN side, they last from about 30 seconds to a couple of minutes and they are not pretty! My neurologist told me to record them. So if you have a smart phone, video them so you can show your doctors. If you have the same as me they are called Hemifacial Spasm.

It can take some time before the gabapentin starts to work. I take 900 x 4 plus trileptal. The feeling of high goes away as the brain and body adjust.

I have felt hopeless at times too but there is help out there so as Mimi says, see your doctor as soon as possible and show recordings of the spasms.

Best, Bellalarke

mimi: yeah that's the thing, TN is so varied that it is tough to know for sure. am going to call my doctor next week and see what they can do in the meantime.

bellalarke: that is a fantastic idea to make a video of it. Funnily enough I was having a severe one while reading this and used my phone to record it. Watched itback and wow it is so visible. Will be a great tool for showing doctors.

Also, you are absolutely right in that the higher Gabapentin dose will work better after a few weeks and the high feelings will fade. I only went up to 900 3x daily from 600 a few days ago so there is hope there. I could take another 900 like you say too if needed.

thanks, been helpful already. great forum this is

Great, glad that’s helpful. I wouldn’t have thought of that either but one happened when I had last neuro appointment and she whipped out her iPhone in an instant! It was also helpful to then show to my GP. I am being sent to a movement disorder clinic just to check out that its not also something else. Also, to perhaps start Botox.
I take have added trileptal to meds as well that is definitely helping…again, an adjustment period.