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Discussion:
5 Months, Synkinesis, Pain and no Doc! Advice?
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Hi guys! My name is Paula. I feel i'm at my wits end and guess i need some support to uplift my morale (maybe getting some feedback from those of you who've also had this). I'll try not to ramble too much, heheh, but here's my story:

So, i got Bell's Palsy for the first time three years ago when i was 21. I had a complete recovery relatively quickly--within three and a half weeks. Well, I now have got it for the second time. The onset of it this time was in mid-July of this year, so basically five months ago. It's been more intense this time around. I had a lot of pain this time, which i didn't really have the first time around.

I've suffered from migraines all of my life, but since the Bell's Palsy, they've become increasingly worse. Well, i don't have insurance or much money and because of my current situation, etc, etc, i only went to see a general doctor at my dad's friend's clinic in late July, a few days after i woke up with it. I took the Prednisone and Acylcolvir for a week, which was how long the doctor prescribed it. I then started having intense pain all over the left side of my head, the affected side and all over that same side of my neck. When the pain got to be too much, two weeks later, i went back to that clinic that i had initially gone to and asked about something for the pain. The first doctor who saw me didn't believe me, which made me really frustrated. Luckily just as i was telling her that i wasn't making it up or being a hypochondriac as she so blatantly assumed, another doctor there prescribed me Neurontin. I took it for a month and it helped. A month later, i ended up having to get another fill. During that time i had four sessions of acupuncture. The lady put electricity during the last session. I couldn't afford going back after that. I'm not so sure now whether it was a good idea to let her put ECT during the acupuncture and if that has some how contributed to the Synkenisis i'm now having. Aggh. I'm thinking too much about it.

To make matters worse, i'd already been having a hearing problem that started roughly four years ago. See, I have brittle bones diseases (Osteogenesis Imperfecta) and that somehow has affected the bones in my ear in recent years. And yes, i'm also in a wheelchair. ha. Anyway, as far as the hearing loss, i don't know if the Palsy has made my tinnitus any worse or if i'm just starting to worry too much now from all that has happened this year.

What HAS made it worse for sure is an accident i had on November 14. JUST as i was seeing some improvement on my face, I had a head injury! I fell out of my dad's car and busted my head on the pavement. I was in the ER for two days, had a small fracture on the frontal bone, a epideral hemotoma and massive hearing loss on my right ear. The injury was on the right side of my head and the Bell's Palsy is on my left, but i still feel like it has somehow affected it and is somehow related to this pain that has resurfaced on my BP side, and it is now more intense than ever. I've spent the last month since my accident having follow-ups on all of the injury related things. And on December 18th, I told the last doctor that I saw, the ENT, about the increased neural pain i've been having since my accident and she just gave me some Tramadol. I also told her that I'd started to get Synkinesis (i didn't know what it was called at that time, so just described it to her) and all she said was, "well that usually happens with Bell's Palsy when the nerves heal and connect to the innappropriate muscle". I knew that! What i wanted to know was what could be done. I wanted some advice on what to do, or another referral to a Neurologist. I'd also been trying to get referrals to go see a Neurologist since the accident too (four weeks of calling) and I had FINALLY gotten the referral on December 9th but two weeks later i was told i wouldn't be able to see one until October of 2010! And it's not like i can look for a Neurologist elsewhere because of my current situation. On top of all of this, i was finishing up finals at University. I think all of the stress i was in all of September through December has tensed me up more than i'd like and has somehow contributed to this increased pain. I just scheduled an appointment to the clinic and will be seen the 22nd of January, but still no Neurologist.

So my face... I can smile a little now and have been doing so since late October/early November. The area where the crease of the smile forms has remained bent and tense there for a week now, so it looks a little crooked. About a month ago, my nostril started to flare, which was great! But now when i flare it, that entire side of my cheek (the crease of the smile) also twitches. Fortunately, when done very slowly, i can close my eye all of the way now. Anther things is, my eye has been blinking on it's own for a a little over a week now, but when it does the lower part of my cheek--just below my bottom lip--twitches along with it. Again, the Synkenisis. The pain i've been having is all over and i've had increased tenderness. I can wrinkle my lips a little bit (very, very little), but still can't pucker them, whistle or anything like that. I also cannot lift my eyebrow and if i try my cheeck twiches, so i don't. The apple of my cheek is still motionless.

Is this pain and swelling common this far along? It's been five months now, and though i was so sure of a full recovery this time as well, i'm starting to lose hope on so many levels.

Any advice on what to do about the Synkinesis since it looks like i won't be able to see a neurologist? I was looking online for some tips on "synkinesis facial retraining", but i think i'd need some professional help with that. I don't want to go ahead and keep doing things like i have been and mess it up even more. I'm going to have to wait it out until the 22nd and just take this holiday break with ease. Like i said, i'm at my wits end and any support would be greatly appreciated.

Thanks and Happy New Year!
Posted on 12/29/09, 04:25 pm
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Reply #1 - 12/29/09  6:51pm
" Yo PaZap,

I am a 52yo male. I have had Bell's 5 different times bi-laterally. The pain was minimal and also neural. The Bell's syndrome affects trhe 7th Octal nerve root. I remember the PCP telling me that it was a virus and a nasty inflamation. Prednisone was the popular med regimen all 5 times. I don't know if it was because of mthe meds or juyst the course of the malady that in just under 30 days from onset, the symptoms disappeared. So suddenly, that my wife noticed before me. All 5 times I was restored to full motion. The secondary Synkinesis was explained to be more of a complication from the companion facial muscles trying to compensate for the the affected ones. This however passed pretty quickly after the bell's subsided. That you still feel pain and the neurontin is not effective, is a most unfortunate scenario. Your PCP is ignorant to your pain, only because pain doesn't usually accompany Bell's. I was told it was rare and short term in worst case. I am so, sorry for your predicament. Pain is very real to the person who is dealing with it. Not so to someone who can't or will not understand. If I can give you any advise it would be to seek a pain management specialist who can assist you in dealing with the condition with monitored medicine until you can be seen byn a neurologist. It is my gut feeling that the neurologist won't be able to solve you issues. He will be more useful though at ruling out any other neurological cause. Babe you gotta love modern medicine. Eh? My Best to you and your continued coping with this.
Keep your head up Kid!!!!

Best Regards,

Just Joe "
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Reply #2 - 01/03/10  11:51pm
" Thanks for the reply Joe! And a happy new year to you.

I wrote this same concern in a Bell's Palsy forum and one person told me they'd read that about 40% of the people that get it experience mild to moderately sever pain--migraines like i have included. A few other told me their experience with pain and Synkinesis was similar. Yes, i think mostly, it's do to the other muscles being on the alert and pitching in with movements the other muscles aren't doing well on. I also notice it isn't so bad when my face isn't as tense. The tenderness has reduced since i wrote this and my face isn't swelling like it was!

It wasn't my PCD who didn't believe my pain. It was this doc i saw at the clinic when i first went in to get the Prednisone. All of the other docters did agree that neural pain can be pesky to say the least. I think, for me, it might have gotten worse due to the accident i had in november. That's when the pain got worse. I hit my noggin pretty damn hard (barely escaped brain surgery in the ER). And because of all that has happened, aside from the Bell's, i was concerned because of that head injury. But then again, the injury was on my right side and i got the Palsy on my left. I'm more hopeful again and thinking i'll recover completely. That's awesome that you recovered so quickly all five times. I did so the first time, unfortunately not this time, but again, i'm getting better every day.

Kudos
Paula "
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Reply #3 - 01/03/10  11:53pm
" Oh and i'll heed your advice on the pain management as i also deal with a lot of other things.

Best wishes "
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Reply #4 - 01/06/10  10:55am
" PaZap,

I hope you can closure on this thing. Seems, Job,from the old testament has nothing on you. My sister in law contracted BP and she started to get some control to her face but the further in time it lasted the more permanent the paralysis. It's so awful thaty they have not discovered what actually causes it. Some DRs. say a virus, some say stress. But you think with the number of individuals who contract this, that there would be more active research going on. Even though it is not life threatening, it does have major social ramifications. You gotta love modern medicine and the pharma-drug companies who profit from prednisone. A pretty expensive drug (steroid actually).

My Best to you and your recovery.

Keep in toch kiddo,

Just Joe "
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Reply #5 - 01/22/10  2:33pm
" Just a thought - Have you been examines by a neurologist to be sure that you have Bell's Palsy this time? There are other things that can cause similar symptoms but are much more serious. I had Bell's that recovered quickly and developed a synkinesis so that when I smile my eye closes. About a year later, very slowly, which is not common for Bells, I developed the same symptoms on the same side. It turned out to be from lupus. Like I said, it's just a thought. "
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Reply #6 - 03/02/10  11:12pm
" Heya Joe!

Heheh. Job? I'm trying to remember about him... It's been a while. I doubt i'm as good as he was. heheh. Didn't a lot of things happen to Saul/Paul too? Well, i'm glad to say i've mad much recovery since early January. I'm still unable to lift my eyebrow right and still have some synkenesis, but my lip (both upper and lower) are coming back. I also haven't had pain in three days (knock on wood). Yeah, those big pharma companies are just banking and banking.

And Perlina, thanks for the advise. I have been trying to see a Neurologist since September actually, and unfortunately haven't been able to. I did FINALLY get an appointment, but it's not until JUNE!

So i'm having to wait it out until then...

Hope all is well with you Joe "
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Reply #7 - 04/13/10  10:05am
" Hi,
Now I have synkinesis after Bell's palsy facial. I live in Poland - nobody know what I can do with this. Doctors said me - "You must live with this". 18 manth ago I was pregnancy beafore finish (left me only 2 weeks) I got Bells paralisy. I start ate encorton when I was pregnant. I ate encorton 3 weeks. I have got electrostimulatsion. One month after Bell's palsy began to let me. But now I'm fighting with synkinesis - I guess that I have carried out electrical stimulation from the bad. I'm tired of lack of control over my face! I would like to to smile and whistle without closing the eye! If I can do something please write me. Thank you very much for your reply. "

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