Zapgirl, I do not get the 70% sure no compression so surgery is a go from this neurosurgeon. If there is no compression what are they going to decompress? I had a chief of neurosurgery operate on me in '05, adventurous and excited he could do wonders for me, well, he was at a loss of words when everything and anything that could go wrong did go wrong, this was for spine surgery. I almost died 2x and was in the hospital for 2 months. You think and believe you are in the hands of the best of the best but this guy had a God complex...and believe me I say today "all the kings horses and all the kings men could not put me back together again"...anyway, you have gotten a lot of responses, my email is loaded with them, excellent discussion, lots of feedback. I hope your Christmas gift is a pain free day...or at best one that the pain is managed so you can enjoy the holiday! Sharon
Thanks great info.
Mimi said:
Faye,
I'll share with you what my neurologist and I do (did) when I was pain free on tegretol. If while on medication, I can get 4-6 weeks of NO TN pain that is when we slowly start reducing the meds. The first time we did this I had had bilateral TN aprox 9 mths....I went into a long remission 8yrs right side, 10 yrs left side.
The 2nd time I started to wean I knew within 24hrs that I couldn't as the "twinges" started up .
My neuro has always followed this protocol with his TN patients because the meds we take are not very good for us ( to put it mildly)
It's a personal decision. I'm glad to see you've discussed this with your neuro.
As for your questions, each time I tapered down by one 200mg pill of Tegretol XR and waited at least 3days before I could take another away. BUT please check with your Neuro we're all different, your neuro will advise the best way to taper for you.
"How do you know if you can?" You don't know. You just try and guaranteed your pain will let you know within 24-48hrs. If you have no pain after that time then you might try another taper, and so on..I usually went 3-5 days to be sure before I tapered again.
Being in remission for ME is : No meds/ No pain.
When I'm on meds and have no pain. I still have TN it's just controlled/responding by/to the meds.
We all deserve breaks from the pain, deciding to reduce/taper your meds is a personal decision that you should make with your Neuros advice. Only YOU know what is right for you.
Maybe you can enjoy a few more weeks pain free, and then re-visit the taper question.
I should add that both times I tapered my meds, I had NO pain, no twinges, no breakthrough pain , nothing...one time it worked, one time it didn't.
(( hugs )) Mimi
Hi Faye, I'm 47 too, TN since 2001, blissful remissions, terrible breakthroughs, MVD in 2007 (pains came back in 2008), Gamma Knife in 2013 (currently no pain, but not sure why)... I've been on varying levels of Tegretol since I can remember, while other meds come and go. Here's my system for tapering: For me, 3 months of either no pain, or a VERY well understood relationship with my trigger(s) is the time. I recently dropped from 1800 mg to 1200 but when I tried to go any lower I started to get spanked, so here I'll stay until maybe late Feb, and try again, and if my remission ends between now and then, I'll have to start all over. While I was on Tegretol + Gabapentin, quitting the Gabapentin was easy as pie - I don't think it ever did anything for me but make me shaky, drowsy, and forgetful. To ME, a "remission" is a period when the meds work. I suppose a real remission would be a period when meds could be stopped, but if your pain is anything like mine, even the worst collage of side-effects is preferable. Control is primary, and med-free is a distant, distant "wish-list" item. Good Luck.
I think your very lucky to have no pain. I would love to find that. I’m on meds and have a spinal cord stim. I’m q little jealous.
Hi, Sharon. If I understand your question correctly, my answer is that the neurosurgeon said that without seeing any compression on the MRI, but based on his understanding of my symptoms, he was less than 100% sure that an MVD would help me. So I did not proceed. My understanding is that many compressions are found in surgery that are not seen in MRIs, yes? Anyway, for now, I take my drugs, I hope for the best, I cross my fingers that the weird feeling in my lip isn't the start of something new. Sending you thoughts for a Merry, pain-free Christmas. best -- Faye
Granny said:
Zapgirl, I do not get the 70% sure no compression so surgery is a go from this neurosurgeon. If there is no compression what are they going to decompress? I had a chief of neurosurgery operate on me in '05, adventurous and excited he could do wonders for me, well, he was at a loss of words when everything and anything that could go wrong did go wrong, this was for spine surgery. I almost died 2x and was in the hospital for 2 months. You think and believe you are in the hands of the best of the best but this guy had a God complex...and believe me I say today "all the kings horses and all the kings men could not put me back together again"...anyway, you have gotten a lot of responses, my email is loaded with them, excellent discussion, lots of feedback. I hope your Christmas gift is a pain free day...or at best one that the pain is managed so you can enjoy the holiday! Sharon
This is an interesting thought, Scott. I'm also not exactly sure how much the Gabapentin is contributing to my pain control. But I know that when I started having breakthrough pain a year ago, adding 400mg of Gabapentin a day and then going up to 800mg a day is what finally got things under control. But it does always feel like it's the Tegretol that's doing all the heavy lifting here. I can't believe you went from 1800mg to 1200mg! My idea of tapering is something like going from 1600 to 1500 (which would require splitting pills since I refuse to take the chewables.) But I'm going to stay where I am for now and see where I am in February, keeping "less-medicated" on my distant wish list. I hope your pain stays away. Why, if you had Gamma Knife this year, are you not certain why you're not pain free? Shouldn't the surgery be responsible for that? Maybe? Hopefully? Peace out, yo.
Scott said:
Hi Faye, I'm 47 too, TN since 2001, blissful remissions, terrible breakthroughs, MVD in 2007 (pains came back in 2008), Gamma Knife in 2013 (currently no pain, but not sure why)... I've been on varying levels of Tegretol since I can remember, while other meds come and go. Here's my system for tapering: For me, 3 months of either no pain, or a VERY well understood relationship with my trigger(s) is the time. I recently dropped from 1800 mg to 1200 but when I tried to go any lower I started to get spanked, so here I'll stay until maybe late Feb, and try again, and if my remission ends between now and then, I'll have to start all over. While I was on Tegretol + Gabapentin, quitting the Gabapentin was easy as pie - I don't think it ever did anything for me but make me shaky, drowsy, and forgetful. To ME, a "remission" is a period when the meds work. I suppose a real remission would be a period when meds could be stopped, but if your pain is anything like mine, even the worst collage of side-effects is preferable. Control is primary, and med-free is a distant, distant "wish-list" item. Good Luck.
I am totally lucky, Stephanie. I hope my luck holds out. As so many people have said, I'm happy to deal with the side fx if the drugs take away the pain. And if I can get to a point where I can cut the doses a little, even for a little while, I guess I'd like to spend some time taking care of the parts of my body below my neck too. I've always wanted to live a nice long (comfortable!) life. I still hope I can.
I really hope you find something that works for you. I don't know anything about spinal cord stimulators. Does it help you?
My best, and Marry Christmas.
Faye
Stephanie said:
I think your very lucky to have no pain. I would love to find that. I'm on meds and have a spinal cord stim. I'm q little jealous.
Zapgirl, you have answered my question. Yes, it is true compressions are found not seen on MRI and frankly TN, ATN, GN and on are clinical dx's based on the symptoms we discuss with your neuro or neurosurgeon. The response I got from a neurosurgeon from this site that I did see was he only treats typical TN with MVD. The answer neurosurgeons want to hear from a sufferer with a negative MRI is " does the pain come on with a stabbing or electric shock-like feeling?" My answer would be no. As with any nerve compression, even compression from a nerve in the spine will present with a shock-like feeling, this one I am familiar with. My atypical GN did start with some stabbing in my ears but is now constant and building in intensity. They sometimes cut a nerve for that one...decompress several cranial nerves, one of them is the 5th. I have been told by an ENT that did evaluate me because I am a post-op TMJ patient 20 plus years ago, the 5th cranial nerve is 1 mm from the TMJ joint and all facial pain forward of the ear is TN and related to the 5th cranial nerve. Go back to your neuro and get a dx for TN. Take it to a neurosurgeon and see if you can be helped. I have already done that so unless I want to start looking for more opinions I am not there yet. I got mine from the top TN neurosurgeon at a teaching hospital in Tampa, USF, recommended from this site.
You are a candidate for MVD if meds stop controlling your symptoms, however, controlled on meds with tolerance to side effects it is not time in my opinion for you to even consider MVD. And a good neurosurgeon should be up front with you about the surgery failing. The worst outcome would be injury to the nerves and AD...anethesia dolorosa, not spelled right. I have had permanent injury to spinal nerves from surgery.
I have had 20 plus years of remission from facial pain and I am waiting this one out. PNS is the only procedure I am interested in, invasive but irreversible if it doesn't work, leads are under the skin, not near the nerves. All of this being said, I am not a medical expert on all of this, I have however experienced electing surgery and dealing with the post-op issues. Have a wonderful holiday and I hope your pain remains controlled. Sharon
Hi. just a quick reply to say that for me medication was not an option - blood side effects e Came off all meds and the pain was quite unbelievable. I felt like giving up. However I had MDV operation in March last year and do not have pain anymore - fingers crossed that it lasts -. There are side effects and they are not very nice but on balance I am glad I had the operation - and Im at the moment medication free . Keep going as Im sure the right way for you is waiting. All the best to you jen