Hello. This is my first post, as I was just diagnosed with GN a few months ago. I am 47.
I am very lucky that I have had complete pain relief with the medication (currently on Trileptal, moved from Tegretol which also worked but the side effects were rough). I feel bad typing that because I’ve read here that not everyone is that fortunate. Almost everything I read anywhere says that the meds do not remain effective long term, and either ever-increasing doses are needed or surgery must be attempted.
My doc was hesitant to confirm that. So my question is, do the meds work permanently for some people? If that’s unrealistic to think, then what is the typical (if there is such a thing) time period that meds will work for? Is there a range?
I am not a person who wants things sugar coated. I’d rather know what I am facing so that I can work dealing with it, coping, etc. Any and all info appreciated.
Yes. Meds can work long term. With any daily medication you will eventually have to adjust the dose but they can work. I was fundamentally pain free for 7-8 years on a very low dose of lamictal. I think one mistake that often happens is people over shoot their own personal most effective dose rendering the medication ineffective. I know I did it was lamictal, I was having increasing problems with my jaw joint on the ATN side, we upped the lamictal, it stopped working. Instead of increasing it again I decreased it back to the original lower dose and it started working again. Of course I also screwed up the balance I has achieved and had to work it all back out again, too.
As another example of careful low dosing, i started gabapentin in 2014 for lymph edema nerve pain that was rendering my left arm useless. I went has high as 400mg a daily, found relief, discovered it was helping with ATN and have since been able to back the dose down to 200mg a day with no change in overall pain control.
I believe the trick is to take as little possible of any daily med and to take it steadily and at the same time every day. Medication is a resource for you body to use so you want it available regularly. Your goal is to keep the level of medication in your body steady.
You also need to lower you stress immediately. You need figure out triggers and manage them. You need to change your overall life to adjust to having a chronic issue. Medications are only one tool, your life and lifestyle are going to be huge factors and you’re going to need to alter how you do things. But you do these things and you may be very close to pain free on very low doses of medication.
I believe stress is a huge problem and can’t stress enough the need to reduce your stress (pun intended!)
I have been on the same dosage of carbamazepine for 5 years with a few lightning strikes here and there (turns out I have a combination of TN1 and TN2) and haven’t felt the need to up it from 300mg 3 times a day. I did start out with namebrand equetro XR, but name brand is expensive so I had my doc switch me with no sense of less effectiveness. the gabapentin was crap for me. I went all the way up to 3600mg a day. I am now taking 25mg of tramadol instead of gabapentin every 3 hours and it is not “life-saving” but it helps and I can actually close my eye with a little less pain so I can get to sleep.
we did move toward the surgery stage but there is no clear nerve/vessel contact to do MVD so I was not a good candidate so very soon now I will try cyberknife surgery. every patient and doctor has to set their own standard by which to declare meds as ineffective. for me, we could say gabapentin was ineffective from day 1.
Thank you both. This is all still very new to me so finding this group and reading your answers is extremely helpful.
Azurelle, that is encouraging that medication continues to work for you. One thing I don’t understand, is it important to try to be off the medication for periods of life so that your body doesn’t habituate to them? Or does going off and on (assuming there is any remission opportunity) mess with your body enough that you may as well just stay on them (if the side effects are tolerable)?
Is it possible that meds could work lifelong? Or does everyone end up at surgery at some point, sooner or later? I know there’s no guarantee. I guess I just want to have some idea of what to pin my hopes to without dreaming an impossible dream.
Not sure how to approach stress reduction but I will work on that :). I’m probably less stressed than I have been in years though.
Egoiste, also glad that you have not had to up your meds. I took gaba for chronic back pain years ago and found it useless as well :(. May I ask why you moved toward s surgery? Was it the strikes you were getting? I also don’t have visible compression and my doc has said that if the meds didn’t work he would suggest cyberknife. Best of luck to you.
I get strikes, but not so much. I have had a constant gnawing pain in my upper left quadrant of my face that never goes away, and I’ve wanted to take a melon baller to my eye for years. I moved toward a surgical remedy because my neurologist recommended it since medications didn’t seem to be helping. she was thinking more along the lines of a nerve block, I think, but the neurosurgeon she referred me to decided to go with MVD, and when that was not an option, he recommended the cyberknife treatment. I’ll try anything at this point
When you truly need a med there is no such thing as a med break, you never come off a daily med you truly need. Would you attempt to take a break from breathing? Would you think it was a good idea for an insulin dependent diabetic to take a 60 day break from daily shots? Of course not. The goal is proper management, again at the lowest possible dose. Stopping and starting a daily med simply screws up the levels of meds in your system, never a good thing.
No, I didn’t mean not taking the med if you need it. Having experienced that pain, I understand there is no management without taking this med or something else.
I am wondering about “remission”. I read that these conditions can go into remission for years. When I asked my doc he agreed that was true. But he said it didn’t necessarily mean I should try to reduce the meds at some point. He said I could, to see my body and nerves would remain “calm” with slow reduction. But he also said that I could just stay on the med.
So I’m wondering if not trying for a remission and just sticking with the med would lead to a faster habituation to the med?
I apologize, the one side effect I have is cloudy mind and not being able to explain myself well
I’m not sure. On one hand if it’s true remission in theory you should be able to VERY gradually lower the dose. On the other hand how do you know if it’s true remission or remission created by proper meds? What if taking meds makes the remission last longer?
These are great questions! I think it’s going to go back to trial and error. Should you start becoming largely pain free drop the dose a hair and see what happens and repeat, going up and down as your body dictates.
The most important thing is not making large or sudden changes. Slow and steady wins this race! And never ever tinker with more than one med at a time, if you do that you’ll never know which one is doing what.
I also have GN . It’s hard to find anyone else who does. I’ve had it for 3 years . I’m 34 . The meds worked for around 6 months for me , with the 6 different ones i tried.
I was at the end of my rope (again) and I started going to The gym 3 days a week and stopped my meds at the same time . After 2 weeks of that the pain faded away . And as long as I keep working out it doesn’t hurt . I got the flu and count for 3 weeks and the pain came right back , then I went back to gym and the pain is gone again. It’s my miracle, I hope it worls for other people .
Hello fedup. Yes, looking through this site I don’t find a lot yet on GN. My doc said I have features of both TN (zaps to the front top of my head, also apparently weird), and all the ear pain of GPN. Yay. And that where those things meet equals GN. Glad to hear from another soul :).
Did you move your dosages around a lot on the meds you tried? The Tegretol worked right away for me, and I had no problems moving to the Trileptal. But of course my fear is the day I feel the pain again. It is hard for other people to understand why I am stuck on this since the meds are working. But I am very anxious and afraid.
I’m interested in you relief from exercise. I don’t exercise at all due to chronic back pain, but your post is inspiring me to give it another go, even just walking or something. May I ask what you do for your exercise?
Thanks Azurelle. Although I am pain free, my doc said he wouldn’t even consider dropping meds for a solid year. I’m totally fine with that. And also okay never dropping if it makes sense. Right now these meds are my best friend and I am more than grateful to take them like clockwork.
Setting my alarm an hour early to try to exercise. My goal is to get out of bed and put shoes on. Hopefully I will feel ready to do a bit more. Baby steps. My meds knock me out at night (I also take elavil) and it is always a slog to wake up …
My GPN was on and off for 6 years, lasting maybe 2 months then gone for a year or more. Then it came to stay, despite tegretol. So it can go into remission. I got sick of it and did the MVD. I’m pain free since October 25, 2012. MVD doesn’t work for everyone, sadly. And it took many months to recover.
I have been on and off of Tegretol for 14 years now. Longest remission was 16 mths 2016-17. Currently on 100mg twice a day and dealing with extra pain as it happens. Initially I was on much larger doses but learnt about Vitamin B12 so took 1000mcg per day and after a year have not needed to be on large doses. My body also works well with Tegretol, no need for regular blood tests. The B12 which builds up the nerve sheaths has been the best thing I found to help.
I have a non-standard jaw, so afraid of recommended surgery, as the danger is I can end up like I have had a stroke and my TN can be on both sides at once. Currently on left side is both upper & lower teeth plus jaw joint.
But I am managing it and self medicating. When I feel the pain go away, after a few days I start to back off Tegretol to see if it has gone into remission again.
I also use small heat packs, which are a great help, plus I keep very busy. My neurologist says I am good at blocking the pain, when I am busy. Xx
I agree that staying busy helps block the pain. There have actually been MRI based studies about it, the more you engage in other things the less actual brain space your body devotes to acknowledgment of pain. The more you focus on pain (or anything, really) the more space in your brain lights up on the MRI over that particular thing.
Or, as my mother always said “walk it off!” and “get moving and see how you feel in a hour…” Amazingly enough, usually once you got moving and busy doing something things were better in a hour.
