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I got diagnosed with TN then got told it wasn’t it was facial migraines because of my age.Need help?

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shalene10943
shalene10943

Hello everyone so the other month I started with pain in my lower right jaw, I just thought it was my wisdom teeth at first. This pain is like electric shocks will come really sudden and can last for a couple of minutes but I could get it 50 times or more a day. Left it a couple of days and didn’t get any better so I booked myself an appointment at the dentist and he said everything with my teeth was fine. I left it another day and I was in tears with the pain I went to the out of hours they give me naproxen (waste of time). I then went to my GP the day after and he sent me up to a&e they did an X-ray to see if it was an abscess , checked my ears etc then sent me home with carbamazepine 100mg a day. At this point I’d had no sleep for going on 6 days, so I rang my GP and said it had got no better he told me go back hospital. As I was waiting for my lift I had tingling feeling in my lip then the right side (cheek and jaw) went completely numb. They fobbed me off said if it got worse to go back. I went to see my specialist and he said due to my age it can’t be TN and thinks it’s facial migraines even though I’m having no headaches with them. I notice when I’ve been talking or laughing a lot it can trigger it off, not every time I’m outside but the cold. I had a filling at the dentist and I’ve been in agony since that’s even triggered it off. Does anyone suffer like this what do people think it is? I’m waiting for a brain scan which will hopefully give me some answers.

0 likes, 3 replies

3 Replies

  • angiegirl
    angiegirl shalene10943

    Posted

    Had TN since2005 and your condition sounds like TN so you need a Neurologyst.  They will probably start you on Gabapentine or carbamazepine. Contact TN association on line.    I know the pain is terrible and people don't understand what it is like to be suffering this pain.    Try sleeping propped up with loads of pillows, I use about 5, if you have trouble drinking drink warm water with a straw and put it to the back of your throat if you can. Eat when pain is at its least and liquidise food or eat warm soup and bread, yogurt, porridge, keep away from cold things. Keep out of wind and cold. Try not to be on your own to long. Keep on and on at your Dr. TN  uk will help you as they are also sufferers.   Keep strong, do you have somebody that will go to DR's and appointments with you. Wright question down before you go.    Take care. Are you in UK.

    • shalene10943
      shalene10943 angiegirl

      Posted

      I’ve done a lot of research on google about both the conditions and it’s 100% tn from what I feel to watching videos of other people with it. I’m on carbamazepine atm like a really low dose. I looked into how this could start and one of them was if the myelin sheath is already damaged which I’ve had GBS in the past so my nerves are damaged already. So I’ve been on and tried a lot of different medication. I wasn’t getting any luck with my local hospital so made an appointment with my neurologist and that’s the one that said because I’m so young it can’t be tn but he has put me through for a brain scan. Will defiantly be trying a few of the things you have said because this pain is so bad, I’d give birth again then go through this. Yeah I’m in the UK are you? How was you diagnosed with it? X
  • marlene36342
    marlene36342 shalene10943

    Posted

    Hi Shalene - this is only my thought but I do believe you have TN.  One sure sign is electrical shocks.  I would get them in my lower right jaw and they would strike at any time so bad all I would just cry.  I live in Canada and my surgery was in another province.  My initial appointment with my neurosurgeon was the question of electrical shocks.  Once I told him this was happening to me he told me I needed a brain surgery called micro vascular decompression.  When you have your MRi make sure it is done with contrast.  This is very important in giving you a correct diagnosis.  I also seen my own dentist, he checked my teeth out and did x-rays and reported all was fine.  I also had appointments with four other dentist specialists and all came back with the same report - not a dental issue.  I had appointments with many specialists, dental specialists and neurosurgeons and it was my family doctor who diagnosed me on my second appointment with her.  If you do not understand MRI with contrast, get back to me and I can explain the importance of this procedure.  Also, if you have any further questions, I would be happy to try and help you out.  I have been dealing with TN since 2006.
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