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Trigeminal neuritis/neuralgia treatment: What works for you?
Brain & Nervous System | Last Active: Oct 22 3:04pm | Replies (66)Comment receiving replies
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
Replies to "Hello again, Jen, Hope you have the time to share more. To briefly reacquaint you: I've..."
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!
Lee-Just happened to be able to quickly respond...you're welcome! Sounds to me like you have had a very difficult and confusing time of it. I mean not knowing when these events would hit you--blindsightedly.
My occurrences were very different than yours...14 yrs ago (6 mos after car accident) I started Neurontin, then got the nerve blocks. After a few months added Tegretol and did more nerve blocks. Then Dilantin started and more nerve blocks...all over a 1 1/2 yr period. Over that time there was a waxing and waning of painful episodes. Then was able to STOP all meds/treatments.
I don't recall any warnings/nerve blips, etc.
In mid-August I had severe and unrelenting pain--right sided throbbing, stabbing and mostly facial-temple, mandible and maxillary regions. I tried Hydrocodone but it only took the edge off the pain, up to 2 tabs every 4 hrs, and was making my stomach ill. Was able to stop the Hydrocodone entirely after the nerve blocks and starting the 2 meds.
email: kobleurjs@aetna.com
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Hey Lee--so let me answer your questions (to the best of my ability!) Seems you have had this pain constantly over 12yrs, and my pain is since mid-August after being pain-free for 14yrs. So, the meds I am on now have not been increased. I don't like taking meds if I don't have to but these meds are REQUIRED! Again, I am on Neurontin (Gabapentin) 600mg 3 x day and Epitol (Tegretol) 200mg 3 x day. When I feel spasms, it is likely that a dose is due. Otherwise I take some Advil/Aleve/Ibuprofen and it helps some. Personally I recommend the meds--the pain was unbearable! The surgery you describe seems drastic and I am not going under the knife any time soon! I have looked up info about such surg on WebMD and recommend you search there as well. Don't take just one doctor's opinion into consideration, please!!