So I am on tegretol and not feeling in major pain. But I am having what my friend calls twinges. They are minor achy pains but nothing major. I cover up my face when I go out side. Have put vent covers up, avoid moving air. Not drinking hot or cold drinks. She says that the twinges should go away by avoiding triggers. What’s everyone’s oppinion?
My TN started out fast and furious about 3 1/2 weeks ago with episodes lasting as long as 20 mins about every 2-3 hours. Was horrible. Now in the last week I just have twinges that are just triggered by touch talking licking lips drinking eating yawning etc. but only pluse for about 2-3 seconds at a time but are all day long. I can’t take any of the meds because of a commpeimised liver and hepc tx. I just pray it doesn’t come back full force. Next is off to a neuro doc. My PA insisted I see an ENT first. And my GI doc wants to rule out a possible side effect from the new hepc meds. So getting an MRI is next on list.
Hi Queen of Denile. I am in year 3 of TN. You will know and find out for yourself about the twinges. Each person is different and what work for one doesn’t work for another. Listen to your body and note what causes you pain. You will figure it out quickly. I wish you all the best as you discover how to interact with life and TN.
Hi all. I did ten years of TN before having the MVD surgery. I wish I would have had the MVD surgery in the first year. All that I have read indicates it is better not to wait and that TN only gets worse with time not better. The medications are borderline useless and turn you into a zombie. My advice is to begin researching the top notch MVD surgeons now. Good luck! Nicole
I was having huge attacks of electric lightning bolt mind numbing pain lasting on average 45 minutes. Increased my Tegretol, now on 1000 mg per day. Have not had a huge attack in two weeks now, but now also having what I call twinges, split-second bolts of the same electric pain, somewhat less intensity, but happens pretty much all the time, usually several times per minute, but am ably to at least talk, eat and function. I sure wish they would "go away "by avoiding triggers, but I don’t think that is going to happen this time around for me. Fortunately, they do stop enough for me to go to sleep, by not moving my face at all, but when I wake up in the morning, the twinges are right there again. Unfortunately in the last few days I am having episodes that last 5 to 10 seconds of greater intensity, it almost feels like the trigeminal nerve wants to haul off and have a huge attack, but the Tegretol is just not letting it muster the strength. I have tried adding baclofen, but not sure if that is helping at all. Since my pain is TN 1, what I have read here lately seems that it is more helpful for TN2? Seeing my neurologist tomorrow, and see what else she can come up with. Also will get a fiesta MRI soon and have initial appointment with neurosurgeon. All my research indicates that if you wait too long for the MVD,it may not work as well. Sure not looking forward to the whole surgery thing, but hoping since my pain is TN1 it may do the trick. Appreciate all the comments I have read on the side about the MVD, positive and negative and in between. It is good to be informed, and know the potential risks and just what is involved in the recovery process.
Kathy you are in my prayers for a great surgery and speedy recovery from TN. Keep us updated!