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Sep 6, 2012 · Trigeminal neuritis/neuralgia treatment: in Brain & Nervous System

Hey Jen— thanks much for the prompt response, and thanks for clarifying! First, to briefly give you a better picture of my experience: I am sure I could NOT have gone 12 yrs with constant pain! My symptoms were such that one never knew when the spasms would occur. Gee, how best to describe? They would always be changing—whether in intensity, duration, time of day or nite, number of spasms each day or nite, location (always on left side of head/face, mainly cheek by ear.

They might occur for two weeks, then be off for a week or two or for three months, but not so long off after the first few years; they might occur every 3 minutes (honest) for six hours in bed at nite, during the last few years; especially painful ones might occur but four times a day; the afternoons for some reason were generally and mostly pain-free til i went to bed, being awakened with jolt, for such apparent reasons as unconsciously biting my lip, moving my tongue, moving suddenly in the course of a rather active dream. Well, you get the picture, friend.

Increase in the intensity of spasms brought me to the realization I could not avoid drugs any longer about a year ago; but my 200mg/twice daily is apparently wearing off, hence my present day exploration.

So, to make sure I hear you: after 14 years, in August, the painful spasms returned; in 14 years, after the first, you’ve only had the recent ‘needle’ procedure; you continue to maintain the same drug dosages.

And, please tell me, during that 14 years or recently as your body’s undergoing a re-settling, do you/have you received occasional ‘warnings’, little nerve blips, that weren’t painful but maybe scary to a mind that has learned to live with the fear of pain?

I appreciate your sharing so very much. And, if you would like to exchange by email directly, please let me know. Best for you!

Sep 6, 2012 · Trigeminal neuritis/neuralgia treatment: in Brain & Nervous System

Hello again, Jen,
Hope you have the time to share more. To briefly reacquaint you: I’ve had the TN pain, left side, for maybe 12 yrs now, and it was getting stronger/more frequent a year ago when I FINALLY said enough and went to meds. I take 200mgs of carbamazepene (tegretol) twice a day.

After about a year now (of peace from pain—but not from fear), I’m getting signs it is wearing off, having some, but not many, spasms of the 20 second variety that hurt, but only once a day and not for a week or so now.

Something has to change, before things get worse. I’m checking out the alternatives, and it seems my options are:
1. To increase the med dosage. I notice you take two drugs, and I wonder if your intake has been increasing over time?? I also wonder just how the amount you take allows for you to function in the work-a-day, social worlds?

2. I also understand your local neurologist has treated you with nerve blocks into your occipital nerve, about 5 Kenalog injections. And this was the first time in 14 years? While you were taking the drugs all during the meantime?

I did not want to explore this avenue in Ore-Wash-Calif, looking for a specialist neuro doc until I better understood your experience. I don’t like drugs! My body has never taken to them well at all, and I have some side effects, memory in particular, or is that just because i’m 65—but I don’t like the pain and having my life taken away from me, even more! If you have had pain relief for 14 years, with drugs and periodic nerve blocks, then I’m listening with great big ears!

3. Microvascular decompression. I have just returned from a consultation with a neurosurgeon at the Oregon Health Sciences Univ in Portland. You might guess his recommended remedy; yes, it’s surgery, low level but surgery nonetheless. They take an MRI. IF it shows an artery and nerve squeezing together, then their objective is to place tiny
sponges’ between the nerve/artery. Of course, this involves cutting thru the skull just behind the ear, then entering the brain thru a 1 inch hole. They note this does have a risk component, though small (5% that something ‘bad’ is gonna happen), and it takes a couple of weeks before you’re up and running around again. [Incidentally, if the MRI doesn’t show such, then there are the more drastic surgical measures they said they did not want to talk about til after the MRI] !

With people my age and good body condition, they say 90% of the time this leaves one pain free for 10-12 years. This is probably the best that can be said for such a procedure, including the fact that the meds are bye-bye, which is a big plus in my book.

Could you kindly shed more lite on how many injections you’ve had over the years, and about how you feel you’re affected by the meds you take? I feel this would really help with a decision i feel will have to be made in the near future. My best health wishes for you, Jen! Lee

Aug 27, 2012 · Trigeminal neuritis/neuralgia treatment: in Brain & Nervous System

So, jenkob and zane, my name’s Lee; live in Florence, OR. And jen, would like to know where to find your doc—just in case I want her/him tomorrow! (and not have to wonder about a guy who claims he can do, and can’t etc)

Aug 27, 2012 · Trigeminal neuritis/neuralgia treatment: in Brain & Nervous System

I hear you, Zane (I didn’t know my just prior post was going to you). I just don’t want to get back into that ‘stopped working’ place you mention!!! And your apptmt isn’t til November! Huh? How could they have you wait so long? I keep putting it out there that someone is going to find a non-invasive (read that ‘no drug’ ‘no knife’) means for healing that which has stricken us. Just a thought in closing: you ever had concussions? or blows to the side of your head? do you have good posture (I don’t)? do you have scoliosis (I do mildly, always have)? Thanks! Let’s stay in touch!

Aug 27, 2012 · Trigeminal neuritis/neuralgia treatment: in Brain & Nervous System

thanks for the post. my experience goes back about just that far with tn. a year ago, i finally gave in to a tegretol generic, carbamazepine—because the pain intensity and frequency was racheting up. The drug has worked fairly well, but the pain has begun to return in its ‘changing week to week’ ways. Has put me back in that old fear mode, and I’m pretty sure I need to find another answer before too much time goes by—so I greatly appreciate your post (it was my reason for signing up) and the possibilities it presents.

Please, please, tell me about the procedure you mention: injections into a nerve. What’s it called? Do Mayo people do a good job? Could it be done in Arizona for me (I understand they have a clinic there, and it’s closer to Oregon)? I share the strong dislike for the ‘cut it out’ surgical mentality, btw! Again, Thanks!

p.s. i had not read Zane’s post before sending mine out.