another neuro visit
 

Hello all,

I went back to the neuro again today i found that the lyrica wasn't working for me i am now about to try carbamazapine i have been put on 100mg 2 times a day for one week and then am going to be 2 x100mg 2times a day so i guess we will see how this one goes i also found out today that i have hemi facial spasms!

Hi from another Aussie.

Sorry to hear about the spasms and I daresay you've also had recent pain if you're on Lyrica. I have had TN in the past but thankfully, not for some time.

I hope your's eases soon, and good luck with the Tegretol. I take Epilum with mixed results.

I get what I call shaky jaw my lower jaw shakeS and twitches, or tremors what ever. it is from my trig nerve misfiring . I think that is diffrent then what you are describing. And do not be discouraged that you have to try another med. it is the way of the t.n. people. we must try and try until the doc finds something that helps controll it. you are not alone on that road my friend. so keep you head up and out look positive ,the ones that havent worked just puts you that much closer to getting the ones that will.
Many low pain wishes Melina :hug: .
Peace

Hi Melina,
Has your doctor tried botox for your hemifacial spasm? My neurologist told me, when he was giving me botox for my facial pain, that he was using the same injection pattern that he uses for his patients with hemifacial spasm. So I know that it is being done.
Good luck, all the best,
Mylastnerve

yup botox and micro vascular are used to treat those type of spasms
here is a link about it.... http://neurosurgery.ucla.edu/body.cfm?id=163
I am sure if you goggle it you will find more info.
keep us posted Melina . you are in our prayers .
Peace
BMW

Hi all,
Thankyou for your kind replies, unfortunately i am in a situation from having bell's palsy that i cant have a nerve block or botox because i run the risk of being completely paralysed on the left side of my face again because the trigeminal nerves are the ones that were damaged from the bell's palsy! that is why i am trying all the meds to try and help my condition!

Melina

Melina ...dare i ask how your birthday was?? I sent you a birthday wish on a thread below this one ;)
and I can say boy that stinks :hissyfit:!!! to hear of your options :(. you are in a boat like mine and doodlebugs and a few others here any surgery will just leave more permante serious dammage. have you asked about neuro stimulation? I have been seeing and hearing it being offered a tiny tiny bit more in certain cases. I am not sure if you would be good for that type of thing yet but you could ask about it. I have a neuro stimulator and I just met a man in the same town I live in that just had one implanted for his face pain and t.n. and also was so lucky and greatly suprised to hear from an old pal that had one implanted shortly after me She is doing well and for that I am swimming in thanks to God and in happiness over the good news.
I know you will probly be on the med after med "wheel" for now and i hope the wheel spins right to a med or combo that helps you tremendously.
:hug: Hang in there and buckle your seat belt the meds wheel isnt fun but it is the only way to find any type of controll and relief from the "monster"
Always in our thoughts and prayers melina :grouphug:
PEACE
BMW

Thankyou for my birthday wishes, i have been so not on this planet since i have started on the carbamezipine i think i have written back but i havent :(
i dont know what i would do without you bmw you have been a great friend to me and i thankyou sooo much for being here for me! :hug::hug::hug:

Melina,

I hope you had a wonderful birthday!

As for the carbamazepine (tegretol) what you are feeling is very normal. It is a very potent drug and has many side effects. Thankfully, most do go away in time.

Just a note of caution, please DO follow up with your doctors while on this drug, and DO have the recommended blood work done. www.drugs.com/carbamazepine.html

Tegretol was the only thing that ever helped me. I had 80% pain relief while on it. Sadly, I ended up having a very severe allergic reaction to it.

Wishing you the best! Nikki

Hi Nikki,
thankyou i had a lovely birthday!! i have just had a blood test and will continue to get checked every 3 months as i am supposed to! i think i am getting a bit of relief from them its a little early to tell yet i have only been taking them for a week and a half now!! thats terrible that you had a reaction to them if they were working for you!

Melina
:hug::hug::hug: