So for the last couple of months I have noticed especially at night my face drooping on the side of my TN. By dinner time I can feel the muscles pulling downward almost like a muscle spasm. Sometimes even twitching. It’s worse if I have had to talk a lot that day or I am very tired. At first I thought it was Bell’s palsy but my dr just blew that off. I asked if I could try baclofen with my tegretol to see if it was muscle related but my doctor again blew it off. He told me to take magnesium. I explained I already did and he said to take more. The magnesium has not helped at all. I even spoke with the natural path at my health food store to ensure I was getting the best one. My neurologist laughed off the baclofen suggestion as well. He is dead set on me only taking tegretol alone even though it is not fully managing the pain and I still have severe side effects( since October 2014). Do any of you have the same face spasms/ and dragging? Does anyone have suggestions on how to speak to my dr’s about adding something else to the mix? The way I see it I am off work now because the pain is still not controlled and the side effects are terrible. What does it matter if I’m more tired if the pain is controlled. I am just feeling frustrated and not in control of my own care.
Ps I’m in ontario and it’s difficult to get second opinions with the terrible wait times.
I'm sorry you didn't get responses, Dizzy. How are you doing? Any improvement?
Hi, I just found and joined the site today, I am in the UK and there is next to no support of here! I also get the drooping at night, however I had bell's palsy 8 years ago as a complication of shingles. I find if I am tired or stressed the drooping is worse. My pain is also worse later in the day or at night. I have tried around 8 different drugs and they either had terrible side effects making me unable to work or did absolutely nothing. I tried acupuncture, botox and regular facial massages. The national health service over here have brushed my condition under the carpet and am seeing my first private consultant tonight, something I have never done before. As I have read on some other people's forums, it might take a while to find a Dr that fully understands the condition, after lots of research there doesn't seem to be any that specialise in TN! I am sorry I don't have any suggestions but it is comforting to know I am not the only one, hope it helps you too.
Hi Heather Smyth,
I am glad you found this sight it has been so helpful to me. I have learned to basically live with the drooping. It still bothers me but other people tell me they can’t notice it. I find if I am tired or haven’t taken my pills at the right times it is much worse so I do my best at controlling those things. I am sorry it is taking some time to find the right doctors for you. I was very lucky as my amazing dentist recognized the symptoms and suggested I see my family doctor. From then on out they have been great. I am however struggling with finding adequate pain relief and managing medication side effects.
Good luck to you and I am happy you found us
i am in manitoba and also find i have a slight drop on my tn side. my neuro noticed it immediately. i feel that i look like i have had a stroke. it is also slightly swollen after a prolonged period of talking and pain. my neuro has recommend baclofen and i find it helps slightly.
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Hi Patty, I too am taking baclofen and I find it is helping a little as well. Your pic was helpful. It’s comforting in not alone.
Thanks for sharing
I get this symptom regularly. Like multiple times a week. My face just feels tired and I can tell that my right eyelid is droopy, but others think I’ve had a stroke. My eye usually closes completely, which is the worst part about it. My fix has been to lay down in a dark, quiet room. I know that’s not the option everyday or for everybody. My neuro has been awesome and I have went through over 36 meds to get to the right ones at the right amounts. Even then, we still always tweeking as needed.
Good luck to you, I really hope you can get a dr that works with you and cares!