I have the atypical type, with constant pain, which is usually mild in the morning, but once I eat solid food or touch the painful area on my gums/face, it quickly builds up to intense and long-lasting pain. I'm diagnosed at 23 but with pain for years longer than that. I taught myself calculus and algebra-based physics when I was ages 10-13, but in high school when the pain started my grades plummeted, and I had to drop out of college three times (only finishing one quarter in that time) and now am enrolled in a community college.

My grades are pretty poor compared to my understanding of the subjects, because between the pain and all the energy I expend trying to fix meals and such (I am autistic and organizing and multitasking are difficult, and being around a bunch of noisy college kids is painful too), it takes up most of my energy just to show up to classes on time (I also have a circadian rhythm disorder which makes it extremely difficult to wake up before noon).

When I was 15, I went to a neurologist for facial pain and got a Rx for amitriptyline. Unfortunately, it made me incredibly hungry all the time, and when I forced myself to not overeat, my concentration went to zero and I had terrible difficulty with cognition. So I stopped that. When I was 17 I got prescribed topiramate for my migraines (had those since I was little but not diagnosed until 17), which I took for about two years. Unfortunately, that impaired my working memory and word finding ability.

I also got prescribed nortriptyline, but had a side effect that worried my neurologist so that he took me off it (I think I had tremors or something). I really can't afford more cognitive side effects, as this summer I am self-studying undergrad plasma physics with the plan to correspond with my advisor about the subject and any problems I have difficulty with, so that he knows that despite my mediocre grades I am bright enough to be a physicist. I also worry about my opportunities to transfer. It sucks to get bad grades in a subject you know very well and have a passion for, but then having pain that prevents you from doing (much) homework and pain distracting you from the exams.

I'm worried about the treatment because not only do the anticonvulsants often have cognitive side effects, but they often have potential for liver or other problems, requring regular blood draws at first. I get convulsive syncope most times a needle is inserted intravenously. Last time when I awoke, my arm extended above me and my hand formed into a fist, I got put into one of those foldable wheelchairs and wheeled to the hospital as doctors and nurses were frantically reporting on my vitals, mentioned I was bradycardic and my BP was (muffled, probably 50 or 60)/38, my vision and hearing fading and right on the brink of going out again, as they brought me to a bed and it seemed to take forever. I HAD BEEN LYING DOWN WHEN THEY DID THE BLOOD DRAW. I had to lie for about an hour on a bed with no incline to the head before I could lift my head slightly without intense presyncopal symptoms. When the doctor walked into my room to check my chart, he said, "Oh my God," and then was very concerned and checked up on all my vitals and said, "Sure you're okay?" That was a scary experience, and I thought I was going to die. So naturally I'm not thrilled about the idea of having to take regular blood draws or risk liver failure. Is there an anticonvulsant (since I've had bad luck with the tricyclics) that doesn't require those initial blood draws? When you had an MRI to make sure there was no tumor or MS, did they require the intravenously injected contrast? If there were, it would make a huge difference for the better.

Welcome to NeuroTalk. I hope you find some comfort here. I don't have any specifics I can help with. My TN is typical and under control now. I don't even remember clearly whether my MRIs used the contrast dye. I think the MRI to rule out tumors may not have had that, but later the MRA (I think that was the name) to find compressions may have had it. A doctor should be able to tell you! I admire your efforts to get an education with all the challenges you have that make it so hard. That is wonderful. I sure hope you find something that helps and that someone here has some experience to share that will be helpful! Hang in there and I sure hope things improve for you!

I had two MRIs with contrast and an MRA.

I take a tricyclic, but at a low dosage. I did gain a little weight. The Lyrica, which I tried for a short time, made me gain more weight...I'm still losing from that. I cleaned up my diet and don't eat any sweets or junk food. Exercising is very tough...sometimes impossible. I have spoken to some people who feel a diet very very low in sugar and/or saturated fats has reduced their pain a little. Some feel being gluten free has reduced their pain a little.

My doctor put me on a compounded cream to avoid really bad side effects of more oral medication. My stomach was ripped apart from all the different meds he tried me on.

BTW, I have heard Gabapentin is very good for atypical symptoms, especially when combined with a low dosage of a tricyclic.

Anyway, so I take a small dosage of a tricyclic orally and then I rub a specially formulated compounded cream on the right side of my face 4 to 5 times a day. In it is: Gabapentin, Lidocaine and Capsaicin. I also went to acupuncture 3x a week for about 3 months. The cream worked SLOWLY but SURELY. I find vibrations and cold air will set me off. On days like this, I take Percocet for breakthrough pain. The cream and the low dosage of the tricyclic really has helped me...something to think about. (Or maybe talk w/ your doctor about taking Gabapentin orally and rubbing just the lidocaine and capsaicin on the most painful areas of your face).

Wishing you well...I know this is very, very difficult.