Posted , 4 users are following.
Hi I have recently had another flare up of what I think is TN and have gone back on meds oF 200mg of Tegretol. My teeth have been checked but it always starts in my bottom right hand teeth? I have a jabbing pain which worsens as I get more tired and worse if I bend down! Any advice please!
0 likes, 41 replies
We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.
Welsh_girl
Posted
Thanks Jewell it's weird I was thinking of going back yet again to my dentist so feels like teeth! But will go to docs instead! And yes Tegretol seems to work for me too! Just need to get some more now from docs for my next bout!!!!!
Jewell Welsh_girl
Posted
Getting more meds shouldn't be a problem. My doc keeps me well supplied. I realize that sounds bad, but, anyway, she is into pain management. I'm sure there will come a point at which it no longer works. Then we'll consider alternatives, but for now I'm good. Regular blood tests are important as the drugs impact the liver. Also, keep taking the tegretol. When you are totally pain free, say for a few months, you can back off gradually. Apparently tn can go into "a remission phase" for a while, months or years, then come back. But that doesn't mean we need to keep taking the meds. So I guess we have to make that determination. Does any of this make sense? I just drank a glass of wine. Teehee!
colin69485 Jewell
Posted
Hi Jewell & welsh girl. I'm enjoying reading your messages. The only thing I would add is that if the pain under discussion goes away - you enter a period of remission- then this doesn't have the typical symptoms of dental pain. TN can be controlled by Tegretol and the pain can go away for months before returning. So one slowly reduces the drug hoping one is in a period of remission. It seems that a specialist input is required but this sounds like TN not teeth but ......! See that neurologist and get a definitive answer.
Jewell colin69485
Posted
Welsh_girl
Posted
colin69485 Welsh_girl
Posted
You're very welcome - it's great that this messaging works so well.
Yes, keep us posted and good luck!
Jewell Welsh_girl
Posted
Your welcome! I really like this messaging also. It helps us all! Did you read about using pepper oil? It's technical name is capsicum oleoresins. Hard to find, but turns out it's in pepper spray......the kind used for defense against an attacker. One of the TN sufferers used it and says he's been pain free for five years. My dr says it confuses the nerve. So I tried it. It's really hard to do because it burns but also the vapors get into your throat and lungs. The recommendation was leave it on the area thirty minutes. I made it to ten. No luck. Still have pain but as I said before the tegretol is working well.
colin69485 Jewell
Posted
Hi Jewell. Pepper Spray! Wow, that sounds like a conspiracy - get TN sufferers to spray themselves into submission! I can't comment at all on the value of this approach except I would be very careful indeed of using something so crude on my body. In Tegretol we trust! 😊
Jewell colin69485
Posted
Hahaha😄 I guess I didn't explain it thoroughly. I dabbed it on with a Q Tip, being very careful to confine it to the painful area. Held my lip out with a cotton pad, then leaned over the sink and let the saliva flow. Very messy.
Welsh_girl
Posted
So been to docs today and got prescription for more Tegretol!
Asked about being referred and scans etc?
Because my second bout of tn wasn't as bad as the first episode doc feels don't need to see anyone at this time! 200mg of Tegretol seems to work for me also painkillers work with this second episode when nothing touched the first time I had it! Rest assured however if pain gets worse or more regular I will straight back!!!!!
colin69485 Welsh_girl
Posted
That's encouraging news. Either way, in the end it's all about getting pain relief which is what you'd be seeking if you were diagnosed with TN. I hope it remains low key, as it seems to be. Go out and enjoy yourself!!!
Welsh_girl
Posted
However been in a lot of pain end of yesterday and today so far pain even woke me up in night!
I think this flare up is possibly because I was only taking 100gm of Tegretol as I was running out until I got to docs yesterday? Fortunately painkillers working but have take them bang on 4 hours! Last 2 days have been taking 200mg of Tegretol think I will up dose to 300mg to get through this episode?
Jewell Welsh_girl
Posted
Gotta keep the level of Tegretol consistent for it to work. Not good for the body to take it now and then. It works the same as an antidepressant....gotta remain consistent for results. Hang in there, with your neurologist' help you'll get a handle on this. BTW I'm on 800 mg and doing well.
colin69485 Welsh_girl
Posted
Spot on, Jewell! Tegretol, Gabapentin and other drugs used to help with neuropathic pain - the stuff we're having to deal with - are also used to help with epilepsy etc., and it's very important to build up slowly and come down slowly - no sudden changes in concentration. Take care!
Welsh_girl
Posted
What do you both do when in remission do you take a small dose to keep it at bay?
Jewell Welsh_girl
Posted
My neurologist said that after a few months of NO pain, we'll gradually decrease dose age to none at all. When it returns, then we'll begin with a small dose and gradually increase it until pain is back under control. I have just enough jabs of pain to know it's still there. So not time to decrease. Hope this helps. Hang in there, there's a light at the end of this tunnel.
colin69485 Jewell
Posted
Hi Jewell I'm in exactly the same position as you! I take gabapentin for TN relief and it's keeping it at bay except for a low level throbbing pain in the angle of my left jaw which feels a bit like ear ache. I'm not sure whether to increase the medication or leave it as it is because, as you suggest, one can 'keep an eye on it', should it go into remission!