synkinesis - spasm/twitch/aching/pain - medication?

[funkysmile]

Hello,

Im new to this forum and wondering if any others are experiencing similar situations as myself? I developed bells palsy in sept. 2008 and now have synkinesis (my nerves have rewired incorrectly). Yes, my smile looks different, etc. I can live with the physical changes however what im having issues dealing with is the uncontrollable twitching and spasms. Im nervous by nature (runs in my family) so anytime i go to speak with someone my face starts to twitch and I can feel a spasm or electricity like feeling going through my lip, above my lip and chin. Also, when having a prolonged conversation it is difficult to smile because my face gets stuck and aches in pain.

I am seeing a competent neurologist and doing NMR facial stretches. Ive had botox to my eye, cheek and chin and i still feel my face wanting to pull in weird directions. Also, Ive been put on baclofen to help reduce facial muscle pain but have not responded to it. Have any of you tried other medication or anything else for that matter that helps stop or decrease the twitching and pain/aching if you are trying to smile and talk? Or have any of you experienced the twitching/pain/aching go away on its own over time?

Ive always been a goofy, outgoing person and this really has changed my social life dramatically. Maybe ill never be like i was before but i think something out there must help slightly decrease the pain and twitching.

(on another note too...ive noticed the twitching has migrated within the past few months to my chin now...not sure if this is good or bad? not sure if i should expect more changes to come...such as twitching in new places or will it eventually go away???)
Thank you so much!!

[4cm in Pacific Northwest]

Welcome!  

Know you are not alone in this...

Know that it took some tries before we got the right Botox amount in the right place with the right facial exercises for me. This does not all happen overnight and here I am at 3 years and still experiencing improvements.

In truth I am concerned that you are getting Botox near the eye area as you stated.

Are you actually working with a neuromuscular facial re-training (re-education) therapist and an ocular-plastics surgeon and/ or neuro ophthalmologist?

Know that some of the weird twitching I had 2 years ago has since improved.

How far along are you since surgery?
 When did you have the surgery?
Where did you have the surgery?
On this rating scale what would you give yourself
House-Brackmann Scale
Measuring the severity of an attack
http://www.dundee.ac.uk/bells/index_files/Page767.htm

We are here to help.

Perhaps look at these two facial nerve diagram links and perhaps you can tell us which nerves you think cross- wired
•   http://www.med.yale.edu/caim/cnerves/cn7/cn7_graphics/fig7_1.gif
•   http://www.fbr.org/swksweb/facial.gif


If I had some more information I may be able to provide better input.

DHM

[funkysmile]

Thanks so much! I really appreciate the input. And Im so sorry to hear you have had to go through all of this too...no one deserves to. It absolutely sucks. At times, I'm so disgruntled and frustrated because I feel like I have no one to talk to who is going through what I am (or for that matter understands). Sooo thanks for any advice you have.

Ok so here's a break down of the events that took place:
Sept 2008 – developed bells palsy
Sept 2009 – 1 year since the bells palsy (didn't have twitching/side effects yet. however my smile/face looks asymmetrical/strange)
Sept 2010 – 2 years today since I had the bells palsy (now im constantly twitching/spasming/have tremors but my appearance has improved slightly through NMR....slightly)

In Jan. 2010 I noticed something weird was happening (weird spasms/twitching/face hurt,etc). Also, a family member told me I was twitching a few months prior to this when I was talking. I've also recently noticed the spasm/twitching has been migrating. First it was cheek pain, then twitches above my lip, now I have trembles throughout my chin/lip and upper lip, aching pain and spasms when im irritated or upset.

I've been doing NMR for 6 months now since Feb. 2010. I went 3 months doing just NMR before I started botox. I finally had my first round of botox this Aril 2010.

My NMR therapist is wonderful. She trained under Jackie Diels and has been great. But I'm really scared I may never rid myself of the facial spasms/tremors/pain and worry they may become worse in time? I sure hope not.

It sounds like like you’ve made gradual improvement slowly over time. Did you ever feel like things happen to get worse at some point though? Do you ever feel that your spasm/twitching will go away? What do you do besides stretching to alleviate the symptoms??? Do you ever feel like your smile/face gets stuck and hurts when you laugh or talk?

In short, I feel like the tin man sometimes. My face freezes up and I don’t know what to do to alleviate it. Any input is greatly appreciate! 

(And in regards to the NMR facial nerves I would say on the yale site: I most likely have an issue with the bracial motor and the special motor nerves. Particuarly the bracial motor nerve that runs to the nose, eye, cheek and it is somehow connected to the special motor nerve that connects to the chin. Oh fun! Haha) 

[leapyrtwins]

funky -

biggest resource I know of for synkinesis - and someone who has it - is a Forumite by the user name of LADavid.

David hasn't been around the Forum for a while, but if you send him a personal message I'm pretty darn sure he'd respond.

Just an idea,

Jan 

[4cm in Pacific Northwest]

What do you do besides stretching to alleviate the symptoms??? Do you ever feel like your smile/face gets stuck and hurts when you laugh or talk?

20 minutes of heat to the affected area.

I have heat bags my daughter made for me of soft synthetic suede upholstery fabric stuffed with couscous inside.  I place one bag on my face and the another- under the length of my spine. It relaxes my muscles (and nerves) instantly. The couscous heat bags warm easily, in the microwave, and maintains the heat. Stretch the facial muscles only AFTER heat.

My synkenisis is worse if I have had too much caffeine or sodium - so I moderate my coffee and salt intake...

DHM

[saralynn143]

Here is a site you may find helpful: http://forum.bellspalsy.ws/

Sara