I have Type 1 TN and am currently take oxcarbazepine at about 900 mgs per day. It is putting many of the electric shocks at bay, however I am having quite a bit of pain at night when trying to sleep. Instead of the electric pain, it is more of a burning, aching, stinging type of pain. I am wondering if anyone has had this kind of pain and if so, have you taken narcotic paid meds for it? I had been under the impression that traditional pain meds do not work with trigeminal neuralgia. I am very curious if anyone has had luck with pain meds in dealing with this type of break through pain. Any insight and help anyone can give me would be greatly appreciated. I have an appointment with my neurologist at the end of this month and would really like to have some ideas to bring with me when I speak to her.
Hey, I’ve had atypical tn for 20 yrs or more since I was a kid. I finally needed to deal with it cause I was spending my days laying on my bed crying in a dark room with sunglasses on and ear plugs in! I had constant ringing in my ears, eye pain, sinus pain, teeth pain, twitching, electric shocks and burning, crushing aching pain. Oh and did I mention I had bilateral pain! Anyways, 3 yrs of chasing doctors I was diagnosed. So I found a pain management program and got myself in there. We tried everything Welfare or disability drug coverage would cover. And the only thing that was helping was gabapentin. It made my constant ringing in the ears and ear pain go away(mostly). That was a god send because now I could concentrate and hold. But conversations. Anyways, eventually my doctor starts telling me we might have to consider opiates. As a person who had drug and alcohol addictions previously the last thing I want is to be on opiate medications. For 2 months I said no to opiates but finally my pain beat me down and my life is way better now with opiates. Granted if you drive you need to be seriously careful.
Thank you Janet for your story. This whole process is so frustrating. I just don't know what meds to try and my doctor seems to just want to try anything and everything going.
Hi mainer
I take opioids along with lyrica for my tn 2. At this point I don’t think I would be functional at all, more curled up in a ball. I’m going to give you a warning these medications are highly addictive and have other serious side effect, example I don’t sleep any more and have serious difficulties with the ER’s here wanting to label me as an addict. There are other social stereotypes types you may face with family and friends. Depending on your doctors view on opioids even just taking one pill for break thru pain might be considered long term opioid therapy. This one class of medications where it should be very seriously thought on to start. That means talking about it with your spouse, family, doctor/s, and maybe your work. Sorry I don’t mean to be a Debbie downer I just really want people to stop and really think about if they should take this class of medications. That includes what are you and your doctor going to do when or if the time comes to stop this medication.
As for if opioids take the pain away, they don’t (most the time). What they do is take the pain level down. I’m still in pain the majority of the time, but at least me 10 is down to a 7 or my 7 down to a 6.
So again really think on this before starting it. I wish I could tell you if this will help you with your pain at night and getting some shut eye but because pain and how everyone reacts is so personal and different I will not be able to say. Best of luck and I hope you will get some relief soon.
Hi, Maineri hope that yo ofu have received some relief, oh! Just read Kari 's post over. I couldn’t of said it better.If I had of had it to do over. I would of just went at like a MVD and researched it out. It is all just so scary! Thanks again Kari for those so put to gather words. I have the thoughts dilaudid took the words. I 'm trying to get them back.I 've heard it just takes awhile and I 've come off klonapin too.That was BAD.I need it now but only, 3mgs instead of 9 mgs and only in extreme need of relief from the er so you know it has to be extreme if I have to get it from the er. I have 3 mgs. left from the last trip, they gave me 3 three and sent me home with 6, to get through the weekend. I am trying to reaserch what my next move will be. Thanks again, Kari. I am glad I came across it tonight. I hope it was able to help you to Mainer. GOOD EVENING EVERYONE! . OH KARI I AM STILL ON SUBOXOXN AND IT DIDN’T HELP MY PAIN IT DOES MY SON 'S BACK. IT 'S LIKE ANY OTHER THING YOU JUST DON 'T KNOW WE ALL SHARE TN TOGETHER YET NOT TOGETHER. I 'M GONE!!
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