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Wotan
Regular Member


Date Joined Jun 2005
Total Posts : 462
   Posted 1/3/2010 12:41 PM (GMT -7)   
 I'm sure there are some here who can help------------------- 
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....with some reassuring words!smilewinkgrin   Since there is no general "neurology" section- I felt this was the most appropraite forum to post on--as it centers on..."neurology"-

OK- Here's the deal--I have hemifacial spasm....& since...1991..&  been treated quite successfully with botox injections.. They really do a great job in alleviating the facial & eye spasms.

I usually get them...every 6 months..(most people get 'em...every 4 months...but my injections.."lasted"...longer.)

I have not had any for over a year now....(had seen my neuro 3 months ago...for a general check up)-& everything was fine--ANYWAY.....here is my story of .."woe"-cry
I live in Philly.....& as a writer....keep a very small one room studio in Beverly Hills..CA. (I also luv the warm winter weather.....& my health feels better out there...no cough..etc..-- --plus, I have a "Screenwriting Seminar", the weekend of Jan 16-17....that I really want to attend & I have already paid for-!   

Anyway.. noticed last 2 w...wks or so---my " facial hemispasm" started to return & I knew I'd need another set of injections---BUT..2 nites BEFORE leaving for LA.....started getting strong myoclonic spasms...in my neck.....back AND front.of my neck-. (by my trachea)---very strong..but ONLY occured.....while lying down-! (This got me to thinking now---that it might very well be related to the "hemifacial spasm", that....the muscle spasms had spread (esp. since I had no "botox" for over a year--to keep it in check!   AND....the laying down, part--made me think that the same cranial nerve (the 7th...facial nerve)--that was "setting off"...the facial spasms--was being "compressed"....when I laid down!
Obviously made it very difficult to sleep--! Arrived in LA...last Tues...29 Dec...& FIRST nite they....they re-occured! I could NOT sleep at all...(They started about midnite...when I laid down to sleep......& in spite of taking an extra....valium...continued.....til....like 4 AM.....when i finally went off to sleep-
 
-They stop when sleeping & when standing or sitting up-Again--they ONLY happen when laying down!  But, my dear HW friend--the "neck spasms"...were very strong, myoclonic in nature!  That nite...2 AM......called 911...the Beverly Hills EMT....were there in 3 mins!   My "vital signs"....were good....& as one of the EMTs.....so correctly put it--(after I explained my symptoms---)
"Robert.....What do you want us to do? If we take you to the ER......really, there is nothing they can do for that!"       He was really "on target"...there!
 
 
-(I had called my wife late that nite...& told her....I was coming home......rt away......)---I made arrangments for a flight next day---(again, not fun  leaving 74 degrees & sunny weather...for...the brutal cold of Philly)---

ANYWAY...........got home.....slept very well....first nite.....2nd nite they re-occurred.,...I called my neuro
.am seeing her tomorrow...Monday...4 January
 
--I definitey need more botox......(like i said..it has been awhile)----BUT....my question..( and I KNOW...& HOPE i get some answers from people WITH this condition or KNOW about it)--here goes--
 
 I am HOPING that this "cervical"...(neck) spasm...IS just "related"...to the hemifacial spasm.....maybe  stated above)-
it spread the neck.
....my neuro can give me some...botox  into the neck muscles! I'm going back...to LA....Thurs-----& I'm hoping...like i said....that this is.."related"...to the hemispasm....& NOT something new!

IF....ANYONE here has hemifacial spasm...or knows about it---has this happened to you? It would be SOooo. reassuring to hear from you:-)
Please---get back....asap
You-have no idea-- if I could hear from even one person, with 'hemifacial spasm' who had it 'spread' to the neck--then..I'd know.."I am not alone!:-)  ---Kindest regards---Robert  -- (PS---i seem to get the strangest maladies!)eyes
 
 

Stella Marie
Veteran Member


Date Joined May 2005
Total Posts : 601
   Posted 1/7/2010 10:19 PM (GMT -7)   
I have a long history of muscle spasms. But frequently when people talk about spasms in their neck area ofen end up with a diagnosis of dystonia. Dystonia and cervical dystonia are frequently treated with multiple boxtox injections and then oral muscle relaxants for B/T. I am sorry I can't be of more help. I know from my own spasms, how difficult and painful this can be to life with. I have used Flexeral, Soma, and Zanoflex in the past. Baclofen works the best for me.

Please let us know what the neurolgist says.
 
P.S.  Who would not want to send the winter in Southern CA.!


Stella Marie

Moderator for Chronic Pain and Epilepsy

Rare neurodegenerative /movement disorder called “Multiple System Atrophy”.  Mobility issues,, neuropathic pain,  spasticity, myoclonus, central apnea, collagenous colitis, joint and body pain, swallowing and respitory  involvement,  Implants: intrathecal pump & neurostimulator.  Extra features: O2 & wheelchair.

 

 

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