Still living with TN fluttering and new pain going down the back of my ear and down my neck having another MRI

I am having the MRI in July 2016 my Neurologist is wondering about the fluttering as it has never ceased since starting on Tegretol ( Carbamazepine ) in 2010. Also a new pain at the bottom of my ear going down into the neck. I have pins and needles in my feet and ankles and now I have been diagnosed with Neuropathy so lots of things going on with my nerves the MRI will hopefully find out the problem. The MRI is going to scan the whole of head, brain and spine.
Living with TN and other nerve related problems.

I had the pins and needles while on Tegretol as well as ankle/ foot swelling. My doctor took me off and now am tapering up on gabapenten. Medication side effect?
With regards to the changing pain locations, I have not had the neck pain from TN but it has “moved” to other nerve beaches on my face. Hope this helps.


can you speak to me more about your neck pain?? Ty What about headaches and very sore shoulders? Can not turn my head side to side.

Do you know if this is hereditary? My sis is suffering as we speak. i have many issues myself and will speak about it if I need to. hope today is a good one for you.


Hi Susan3,
I hope you are doing ok today. I joined this site because my sis is suffering right now! Is this hereditary? I have nerve issues also and will speak about it if I need to. I wanted to know about your neck pain and if it goes down on your shoulders, I can’t turn my head side to side. Also headaches. Thanks and will wait for reply if you can and when you can.

I really don’t know if TN is hereditary or not, but I have suffered with Neuralgia all my life since I was a little girl but then it was only in the really cold weather here in winter. It becameI really bad in 2010 and I was then 59yrs old it hit me so hard I was going home in excruciating pain from work more times than I care to remember. I became numb on my left side of my face in the last big attack I had until my GP diagnosed that I had TN and sent me to Neurologist. Then he put me on Tegretol ( Carbamazapine) 100mg per day then later in 2011 my GP upped the dos sage to 200mg then 2013 the dose was upped agin to 300mg. I have been good until the pain has gone into my neck this year 2016. My new Nuerologist is giving me the MRI to see if he can see the Trigeminal nerve and if it is being pinched somehow. Also wanting to rule out MS with other nerve problems I have such as Peripheral Neuropathy and find some causes for numbness in my face, leg, arm and feet. I hope this has helped you and that your sister is getting the medical help required for he TN.

Have you been to see a GP with your headaches? You may have something wrong in your spine if you have ever hurt your back? The pain in my neck is like sharp electric shocks and the only last a few seconds but it is very painful.

Hi again and thanks for taking the time to reply. I hope today finds you well. My sis is so ill and waiting for Dr Appointment and diagnosis. All indications are pointing to TN. Descriptions from most all on this site on exactly and I mean exactly what she is going thru.
For me I have been dealing with pain since a traumatic accident in 1983. I been diagnosed with Fibro, TMJ (extensive dental work), had 2 back surgeries, that 2nd being the worst. I am just checking because my neck-shoulder-head pain has been hurting since April, it is getting worse, going into my face again. I could need an ajustment on my oral appliances.
Thanks and Prayers to you

Oh Susan,
I am so sorry for your pain. TY for response. Sister is Susan also. She has been on tegratol (PCP) only 9 days still in excruciating pain. I try to help with any helpful hints on this wonderful site. She is scheduled for neurologist mid-Aug. I hope he can help. Did you ever consider surgery, if I may ask. have a great day. God Bless.

I have pain behind my ear going down into my neck. Very stiff sore shoulder. Those were actually my second symptoms of pain. First I just had it in my lower jaw. Now I have it on both sides of face. I have this feeling in he back of my neck and head like cords being pulled tight. My shoulder needs to be worked every day or it will get stiff. I have a very hard time turning my head to the side. I have done X-rays, CT scans and MRIs. Nothing ever showed. I go to the chiropractor and get massages. I can’t handle my head being massage so it just my neck, shoulders, and back. I have asked my doctor if it’s related to TN cause meds that help with TN don’t help with the constant pain and tightness and what helps with that kinda works for TN. I was just diagnosed for TN 1 &2 a couple months ago. So my doc and pain specialist are working on what helps with what pain. Kinda glad to know other people with TN do seem to also have this kind of pain.

TN can be hereditary. It is rare but there are lots of us out there with this in our family. I am the fourth member in my family.

I have MS that runs in my family. I have been tested since TN can be a sign of MS. So far I am clear of autoimmune diseases.

I still have the numbness in the right side of my face but the pain in my neck has been helped by my Specialist putting the dosage of my Lyrica from 150mg up to 300mg and the neck pain in my neck has subsided…the pain in my upper right leg has subsided too…but I am still having trouble with my face…I still have numbness on the left side of it & I have still got the fluttering going up & down it. My Specialist said that nothing showed up in my MRI so it could be viral what has happened to my face…no more investigations by the looks of it as I don’t have to see him again unless the memory problem and words problem I have gets worse…I do hope that all is well with you…

Oh my Susan,
I guess right now day after day you have to take the good with the bad. Can you tell me if you had the Teflon buffer surgery?

If not why? If I may ask. It helps me to help Susan, my sis. What do your do for the fluttering or numbness??

Hope to hear from you soon.
God bless and heal you Susan, my prayer to you…in the name of Jesus Christ. Amen

My facial fluttering I just put up with it I don’t take anything for it…sometimes it is all day but I don’t think about it if I don’t have to. .I haven’t had any operations for TN my specialist said that some people have it and they don’t know how it occurs .I hope this helps you on some way…

Thank you Susan3,
any input from all is appreciated. Hope you are having a good evening
thanks again