Okay…reading and re-reading all these posts…I really wonder if I am being diagnosed correctly. I say that because the Drs. always ask me…what triggers my pain??? Am I ever pain free?? Well I always tell them eating or talking etc. triggers my pain. Yes I am pain free if I don’t do those things…BUT…here is my question. I take baclofen and tegretol…so of course there are times when I am pain free. But only if I take medication…I don’t know if I am pain free without it cause I am not going there…I always take it. Also…even with the meds it is still there to a point. They say with typical TN you have periods of remission. I have had this for 1 1/2 years and have NEVER had remission except for 2 weeks in August. I never have a day without pain and have to take my medication every day on the hour… So since I am never pain free does that mean I have atypical?? I don’t know if I am explaining this correctly.
Mary,
I totally understand your confusion too. I'm in the same boat though your triggers only sometimes cause pain for me and others they don't . My post of Classification of TN has been helpful and confusing to me too (so if you want take a read). It seems like our community as well as doctors all seem to have a different opinion on what classification we are (based on hearing others stories and symptoms) as well as what is the right thing to do to help us.
Have you been having stabbing pain that long or burning? I'm happy to hear at least you had 2 weeks of pain free time! Thats better than nothing, right? Are your meds making it better or not doing anything?
Good luck to you in your search for more pain free days!
Jen
I have stabbing pains…but sometimes they are burning stabbing pains. The meds help for sure…but never take it completely away. I can tell about two hours ahead that it will be time to take them again. Okay…I know this is going to sound crazy…but honest it is true. The baclofen and tegretol most often make be woozy and dizzy…however…sometimes they don’t…when they don’t I get no relief. When they do, I get some relief…now when I take them and don’t get dizzy…I know they are not going to help…that sounds crazy…but it is the truth…has happened to many time to be a coincidence.
Mary, all i can say is Ditto! I feel exactly the same. I am always medicated on Teg CR and Baclofen. I take them 4 times a day. I can't go without them so how can i really say what the pain is like now. I have pains thru out the day and a few major attacks but...being on the meds alters the feeling. I think I have typical TN and have had it for about a year. The break thru attacks i get now are much more severe than what i had at the beginning. Hun???? If you don't mind - how much Teg and Bac are you taking. I am on 1300mg of Teg CR and 40mg Baclofen. When it works well for the pain i am completely functionless, Double vision and dizzy. If it is not...then i have pain. But feel physically better, less tired and i am able to live.
Erin
I think the main differences between atypical and typical is what the pain is like. If you mainly have the tingly or lightning strike pain than its typical. I don’t think whether there are triggers or remissions really matter. TN is very rare and very confusing. Doctors really don’t know much about it, I don’t think. Either way you have been dealt a shitty hand. Its what you do about it that matters.
Hi, Mary.
This question has probably already been resolved for you, but, Janet is right. The primary difference is the characteristics of the pain. That is why I asked people to describe them once on the discussion board. As defined by many sources, Classic Trigeminal Neuralgia, or TN Type I usually begins with a shocking sensation, with that being the primary symptom. Unless one has a combination going on, poor souls, they would have periods of remission without drugs. But, the hellish sounding thing is that they would never know when the shocking pains would return.
I, on the other hand, am a textbook case of Atypical TN, or Type II. Unmedicated, except for a little while upon awakening from sleep, my face is a mess of crushing, throbbing, searing, aching and burning sensations. Recently, I've been feeling some shock like sensations. I wouldn't even call them pains. I can hear them. I can feel them, but they don't really bother me too much, like the symptoms which I described above, which are ATN symptoms.
My 2 cents worth, from reading about your case, especially (correct me if this was not you), your blog "Constant", it sounds to me, and like the site says we aren't docs, but I would think you have ATN . . .just my opinion.
I left a comment on your page. If you learned anything important from the seminar you attended, please pass it forward to me if you have the time. I understand that you do what you need to do when you are able, and that leaves little time for other things sometimes. That is why I say, "if you have time".
Hugs,
Stef