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new to TN

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Alie1234
Alie1234

Hello all. I have had tn for a couple of months i to went to the dentist thinking it was a tooth. and i read up on it and keep reading about short attacks of electric shock like pain. now i have been getting that but also a constant pain in my ear my top bottom jaw and side of face i cant let my top and bottom row of teath meet. is this TN its just cant help thinkingits not because i keep reading the pain goes away after a few minutes. i was put on carbamazepine and although the side affects are not brilliant it took the pain away almost completly just felt a twinge in my tooth. but the pain is coming bk so my dosage has been put up and the side effects have obvously got worse. will these side effect wear off ??

Hope i have done this right its the first time i have posted in a forum biggrin

1 like, 27 replies

27 Replies

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  • RachisCool
    RachisCool Alie1234

    Posted

    Yes you have and welcome aboard :-) your not alone. Sounds like your Doctors sorting it out the right way So don't panic.

    Good luck.with the meds.

    Hugs.

    • Alie1234
      Alie1234 RachisCool

      Posted

      Thank you for your reply. Was starting to feel very alone with no one to talk to who really understood! SI glad I found this forum x
  • eddie13
    eddie13 Alie1234

    Posted

    Natalie,

    Sounds to me like you're on the right track. There's the electric bolts & dull long lasting pains - 1 or 2 weeks. Side effects beat the bolts right ? That's managing. You'll still get the dull pains while managing but far far fewer bolts. At least that's my story of the last 8 years.

    eddie13

    • Alie1234
      Alie1234 eddie13

      Posted

      Hey eddie thank you for tour reply. yes the side effects definitely beat the bolts and the bolts this time round are not as severe. Just hate feeling nauseous and spaced out. I hope this will wear off over time.
    • eddie13
      eddie13 Alie1234

      Posted

      Yes I suspect you'll do better soon. I'm165 lbs on 800 mg / day carbamezapine. My root cause is MS. I get blurry vision and lack of balance from that. I'm 55 and dang thankful for carbamazepine.
  • michael127
    michael127 Alie1234

    Posted

    Hi Natalie, I`m 66 And Have Had TN For 20yrs ,Sadly It Is Recurrent, On The Good Side Once It Disappears It May Take Up To Or Longer Than 5 yrs To Reoccur. Try A Bag Of Frozen Peas On Your Affected Area ALL Over The Half Of Your Head, Then Pop A Co-Codamol Under Your Tongue And Let Dissolve , If That Doesn`t Clear, Take One Tramadol...As I say To Other Sufferers `I Feel Ur Pain.`
    • RachisCool
      RachisCool Alie1234

      Posted

      Any slight wind or cold chill will make it 100 times worse so don't bother with the frozen peas.

    • Alie1234
      Alie1234 RachisCool

      Posted

      yes I have found with cold and wind it makes it worse. Actually made the mistake of trying ice cream and it was so so painful. Can't have hot or cold every thing has to be just right. When really bad have to use a straw to drink with.
    • RachisCool
      RachisCool Alie1234

      Posted

      During the winter dare not go outside without my hat on and I hate hats.

      Working with this condition and taking meds is a nightmare.

  • Glor888
    Glor888 Alie1234

    Posted

    Hi Natalie

    Welcome to the forum.

    Ive been a sufferer for over 20yrs and I was eventually put on Tegretol (Carbamazapine), and I too suffered with the nausea and drowsiness. The side effects of the tablets wore off after awhile. So it was well worth it to get complete relief from pain.

    My dosage was increased gradually to 1200mg a day. But as time went on I couldnt stand the nausea etc so I started off by taking a smaller dose 4 times a day and gradually increased to 1200mg. That way I wasnt suffering with the nasty side effects which kept me indoors for so long.

    My pattern was 9 months on and 9 months remission right up until I retired then for no apparent reason I didnt get another bout for 6yrs then it came back with a vengence. I knew I would have to go straight back to Tegretol but this time it didnt work I got other side effects which I never had before. So my Dr had to try me on different medications but I had the same problem of nasty side effects. Finally I was prescribed Pregabalin in small dosages but I was still in pain. After trial and errors for 2 months I'm now ok on my dosage.

    Ive never tried any other remedies but I did see one on this forum for one, which escapes my mind at the moment but if I remember I'll let you know. 

    I hope your side effects subside soon, you'll probably find after each increase the pain will stop and you'll know that level of dosage will be ok for you.

    Let us know how you get on.

    Regards

    Gloriana

    • Alie1234
      Alie1234 Glor888

      Posted

      Thank you for your reply. i am going to try the same i think. my dose is also 1200mg so i will split into smaller doses and see how i go. i have been house bound since going from 800g to 1200mg even tho i was having side effects they were barable but 1200mg the side effects are not. all i wanted to do is lay down as could not bare to move my head around. and the nausea is bad as well. 

      Thank you i will let you know 

      Kind Regards

      Natalie

    • Glor888
      Glor888 Alie1234

      Posted

      Hi Natalie,

      Each time my Neuralgia returned my Dr gave me 400mg 3 times a day and the Nausea was unbearable. There were times I would be lying on the floor and heaving but not vomiting. It was awful. My Dr said it was best to take the 400mg straight off and suffer the nausea to get it over with quickly. But for me it took too long and I hated being in bed or doing nothing all day. So I decided on 50mg x 4 daily and gradually increased the dosage, I think it was weekly. I still suffered with the pain but gradually the pain was reduced or didn't occur as often during the day.

      It was a slow process but I also found this time around, when I was first put back on tegretol, I got my son to bring me a cup of tea and a biscuit to have in bed before I sat up properly, I just leaned over to take a bite and sip. That way I didn't feel as bad when I got up in the morning. But I don't have that problem now since I was put on Pregabalin. 

      I must say though Tegretol is the best if you can tolerate it until the nausea stops then you will be fine.

      All the best

      Gloriana

    • Alie1234
      Alie1234 Glor888

      Posted

      Thank you i will consider asking my docter. i have been taking a smaller dose but more often today which has helped alot. i went out of the house for a few hours. so i will stick with this for a while and see how i go hopfully be able to up the amount i take little by little. i can cope on 200mg at a time at the min and my dosage is 1200mg so its doable. 

      kind regard 

      Nat x

    • Glor888
      Glor888 Alie1234

      Posted

      That's great if you can take 200mg straight off, hopefully you'll be on your 1200mg a day before you know it. Fingers crossed you won't be suffering with your TN for long.

      Unfortunately for me my record of 9 months on and 9 months remission hasn't worked this time around. I've gone past my 9 months on as I'm into the 10th month now. But I have put that down to being on a different medication this time around. 

      Anyway good luck with your dosage and by all means keep us updated with your progress.

      best regards

      Gloriana

    • RachisCool
      RachisCool Glor888

      Posted

      It's gone to the other side of my face, jaw and electric teeth. :-(
    • Alie1234
      Alie1234 Glor888

      Posted

      Hey how are you ? Just thought I'd let you know I'm now managing to get 200mg in twice during the day and a 400mg at night so I'm getting in a 1000mg I'm going to start trying to get in the other 200mg to bring me up to the 1200mg soon. Think I'll wait till after the weekend tho as having a short stay in Yarmouth and don't want to feel like a zombie for that. X
    • Glor888
      Glor888 Alie1234

      Posted

      Hi Natalie

      Im not too bad thank you. I'm just disappointed this TN is lSting longer although saying that I've not felt any twinges in between taking my tablets. I might try reducing my dosage again soon to see what happens.

      Im pleased your dosages are working out ok. How is the nausea for you?

      best regards

      Gloriana

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