We are patients living with Trigeminal Neuralgia, here for your support.

bi-lateral tn.

When I get tn i get it on both sides. not at the same time. Not one side more than the other. I get smacks in my cheek on different sides, pains in my head, teeth ache on both sides. In four years my Tn has gone to my throat, then in my teeth. I can't say in four years time it has gotten any worse, but spread into areas of throats and face and teeth. The bad zaps in my head are very very rare. I've been very lucky to have not gotten worse. I had a lesion on my brain stem, why no one knows but I've had no more lesions since. hope this helps someone

Replies to This Discussion

Permalink Reply by Elizabeth on November 10, 2010 at 5:57am

Gloria Erickson said:

Hi Katie,
I've read about many MRI's that showed nothing and then when the surgeon went in, compression of the trigeminal nerve was found. I've been diagnosed with bi-lateral atypical TN. I'm on 2700 mgs of Neurontin/Gabapentin and was told that was the max dosage. I don't even think the doctors know? Hope the doctor's appointment went well and you get some relief. I saw a neurosurgeon two weeks ago who is an expert in the field of TN and told me that surgery is not an option because it doesn't work with bi-lateral TN or bi-lateral atypical TN. He also said it can make the pain worse. I'm okay with not having surgery that won't work, but then of course that means I'm stuck. Hope things are getting better. Keep me posted.
Gloria

Katie said:
I have read all your blogs and I, too, have pain on both sides of the face at the same time. I just met with one of my neurologists and he upped my gabapentin (neurontin) to 4200 mg. Have any of you been on this much medication? I feel like I am taking pills constantly. This dosage does take the pain away, but I have to be very careful that I do not take them too close together or I feel stoned and forget what I just did or what I am about to do. I am going for another opinion tomorrow. I have had this pain for 1 year now and the headaches were getting alot worse...never had headaches until the last few months. It has always been in the forehead, cheekbones, teeth, and ear areas. They did 1 MRI on me initially and an MRA, and those both were fine. I have 3 neurologists and none can explain why I have this pain, nor are any of them interested in finding out the cause. I just get pills thrown at me. Should I be content? Or do I try harder to get to the bottom of this? I just feel frustrated! I have 4 kids, the oldest being 5, so it is really hard for me to make dr. appointments and such. I am 31 and just wonder what the future has in store for me. Any advice? Anyone else on this much medicine?

Permalink Reply by Elizabeth on November 10, 2010 at 5:59am

Hi Gloria,
I was so happy you wrote to Katie, I did not know about the doseage of medication. I did not know we are not candidates for the surgery either. I always learn on this things I should know already. I hope everyone is ok.

Permalink Reply by Elizabeth on November 11, 2010 at 7:26am

Sometimes a nurse tells me to take the medication each day or be careful about stopping and the doctor doesn't seem to be that concerned with it. I went to three doctors neurosurgeons and they all differed on what was wrong. Which doctor and in what state do you feel is the most informed doctor about Trigeminal neuralgia. I have the book they suggest and read that. my doctor feels this site is for the hopeless. I think he has no idea what he is talking about. I know he tells me I might not get as bad as most people are on this site and he feels that if I read about it, it might make me think I will end up with the worst case. I hope he doesn't want me to worry over it. If I were a doctor I'd think I'd join the site to read about patients. Guess they are too busy with other problems. Thank you for researching.

Permalink Reply by stacey nason on February 1, 2011 at 8:35am

hello my name is stacey i have bilateral tn i get pain in my head cheek and jaw as well as back of neck and top of head which i was orriginally told was not aprt of tn but then a doctor from the TNA Assosiation told me was possibal i am on the max dosage of lyrica and tegratol and still having break throug pain at least once a week i am constantly stoned out of my mind so please escuse my speeling and writing if i go slightly of track it is hard for me to consentrate on keys right now but i felt i needed to reply because me and my husband have been talking aboiut doing an open MVD which is where they go in and look for nerve that is not present on mri's i have had 17 mri's all fine a catscan and an orbital mri i also have had the 1 ml mri instead of the general one which slices at 3mls all negative i am desprate for some relief and unsure where to go if i am maxed out on meds what is my next step because my neuro is saying she is unsure as well and giving up if this dosage doesn't work i am frightened to tell her it is not i watched a video from the tna association and in it it he talked about all options for tn patiants at this time and the only thing they have for us after two hours is an open mvd or meds in the us and one thing in france that is doing good his advise was to go to france??? i cant afford that so i guess after all this rambling is do u reccomend i try the open mvd or stay away from it.

Permalink Reply by Elizabeth on February 1, 2011 at 9:51am

Hi Stacey,

I can't tell you what you need to do because you have a hard decision and it being your body and your risk it is one you need to make up yourown mind. Atypical TN isn't a good candidate for surgery. It doesn't work on us so medications are it or its our wasted money and time and recovery on surgery. A lot of people here have had that surgery and you can ask them.

You can write the surgeon in France and ask if he ever does surgery in the United states. If he travels to the United States. I wish I could stop your pain. I wish I had an answer for you. You can start a fund and post all the information about the disease and the surgery and the cost and then ask people to donate to that cause. You would need permission from the managers on this site but it might be worth an attempt. Please let me know what you find out and what you decide. My thoughts are going to be with you. Sincerely, Elizabeth

stacey nason said:

hello my name is stacey i have bilateral tn i get pain in my head cheek and jaw as well as back of neck and top of head which i was orriginally told was not aprt of tn but then a doctor from the TNA Assosiation told me was possibal i am on the max dosage of lyrica and tegratol and still having break throug pain at least once a week i am constantly stoned out of my mind so please escuse my speeling and writing if i go slightly of track it is hard for me to consentrate on keys right now but i felt i needed to reply because me and my husband have been talking aboiut doing an open MVD which is where they go in and look for nerve that is not present on mri's i have had 17 mri's all fine a catscan and an orbital mri i also have had the 1 ml mri instead of the general one which slices at 3mls all negative i am desprate for some relief and unsure where to go if i am maxed out on meds what is my next step because my neuro is saying she is unsure as well and giving up if this dosage doesn't work i am frightened to tell her it is not i watched a video from the tna association and in it it he talked about all options for tn patiants at this time and the only thing they have for us after two hours is an open mvd or meds in the us and one thing in france that is doing good his advise was to go to france??? i cant afford that so i guess after all this rambling is do u reccomend i try the open mvd or stay away from it.