second episode of TN

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I was diagnosed with TN in october i was off work for 3 weeks. The worst 3 weeks of my life! I was on codeine and then got prescribed carbamazapine. I could not take it however incase i was pregnant. 10 weeks again and i got my second episode. Still trying for a baby too which meant it was very difficult to be prescribed anything that would actually help. The pain has been unbareable and ive been off work another week. Ive just bought my first house and being off work so much is causing problems with money and work. Im also struggling because i think people just think ive got a tooth ache and do not understand in the slightest.

My episode recently stopped. However during the time i was getting my attacks i kept biting on my top each time to try and help the pain. I was tossing and turning and crying and ifelt biting doen hard on an item of clothing gave some sort of comfort. Since then i can hardly up my mouth more than half way. It hurts to push my wisdom tooth down and bite down on food in a certain way. I have a big lump in my neck which is really tender and hurts to touch. Im guessing its a gland. It hurts to swallow and move my chin to my chest. Im having to use all my painkillers still even tho i no longer having tn attacks. Is it possible that ive maybe widened the base of the tooth in the gum and its now inflammed? Ive got a filling in the tooth altho to me it doesnt look like it is 100% through. I had my teeth checked before i got diagnosed with tn and altho i have decayed teeth on that side with fillings. My dentist said there was no sign of infection under any of the teeth. Any ideas? I dont want my dentist messing with my teeth and making the tn worse. I didnt have this last time so all i can think of is its been caused by me biting down hard on something each time i had an attack! It didnt feel like this whilst i had my episode. I was happy when my episode was finishing but then i was left with this. Any help woud be much appreciated. Thankyou

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  • Posted

    Hi Katie. So sorry to hear your experiencing so much pain. Your symptoms sound so similar to mine. Mine started with a gum infection but after the infection passed it seemed to have attacked the weakest tooth in my mouth which I believe it usually does. Pls know it's not the tooth so never think to have it taken out. It's the nerve that's damaged. Not tooth nerve yr Trigeminal nerve. Try to research that nerve and how it affects the whole jaw, cheek, lip, ear etc.

    It's best if you can take the medication for a longer period at least 6 mths which will allow the nerve time to calm down. I respect your trying for a baby so I sympathise with you but you want to get this condition in a more manageable state before you fall pregnant. I can't imagine how you would cope with TN and a new baby being in so much pain. This is also a stressed related illness so it will get worse the more stressed you are and it sounds like you very worried about your job, health, mortgage etc.

    The pain in your neck the lump, I also get that and yes the tightness in my jaw and biting down is not helpful. Try a gum guard at nite so u don't put too much pressure on your jaw. Mine has gone to my neck now so it works its way down. Maybe ask your GP for amitriptyline to help you at nite.

    The pain will come and go if you not consistent with the meds. I spent a year on Tegretol and I have been in remission for touch wood 4mths now. The TN is still

    there as I get twinges and my teeth are very sensitive to hot and cold, mainly that one tooth. If the stabbing pains return I will be straight back on the meds.

    Good luck X

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    • Posted

      Thankyou very much for your response smile

      I am only 27 and it has come as a massive shock to me. I saw the doctor again today and she said its all still related to the TN and has signed me off for another week. Which i really did not want to happen.

      Before i got diagnosed i did see my dentist. I have a lot of fillings and he did say from the x ray he could see no sign of infection but that the teeth were badly decayed but until 1 can be pin pointed he couldnt do anything and then mentioned a root canal!

      The first time i ever had an episode i didnt have this issue after i had all the attacks they slowly stopped over the 3 weeks and that was the end. This time i was happy that my attacks had finished. But i suffered a lot of continuous attacks with no chance to recover between them. I tense up loads and used a lounge top to bite on on my right side whilst tossing and turning on the bed crying and my top half going bright red with a heat rash from the pain. I can open my jaw halfway. And now and again get a sharp pain when i bite on that side in a certain way. When i push on the wisdom tooth which has a filling in it it hurts but looks normal. Under my jaw and in my neck is so so tender. But when im on the codeine and paracetamol together its not as bad to touch. But its hard to eat as i cannot get my mouth open wide enough to bite down. When i was having my attacks i was using a straw to drink but now im not the liquids seem fine.

      The drugs for how im feeling help now as long as i take them evry 4 hours. I have oramorph if they arent enough.

      When im having the attacks its not enough but like i said i didnt want to take the carbamazapine incase i was pregnant.

      The drug you have said about my doctor said there is a small risk with that one in pregnancy bt when the pains that bad they say it can still be prescribed.

      After the last episode in october it slowly faded then i stopped the codeine. In which time i was trying for a baby as im worried no matter what im always going to get these attacks so it will happen during pregnancy so im going to have to get through it whilst i try and conceive as it could become more frequent over time. Its kind of a lose lose situation for me at my age sad but ive always wanted children. Its not something im willing to sacrafice.

      I will look up the nerves like you said thankyou smile

      I didnt realise it was a stress related illness. I wont tell my mum that as she blames stress for everything and i told her it wasnt lol.

      I used to suffer with anxiety and still get it very slightly now but not like before when i was on anti depressants.

      Does it take years before an episode errupts?

      Im booked in for an mri on the 19th of april and a blood test next monday.

      I couldnt seem to work out my triggers!

      Ive read about alcohol being a trigger?


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  • Posted

    No worries Katie.  Yes you are young to get this which is such a shame.  I would not recommend root canal unless it was urgent.  Dont confuse TN pain with tooth ache especially if this is how it started.  I dont know where about u live but if you in the UK there are some good forums/sites on FB if you type in Trigeminal Neurelgia UK. You can pick up lots of info and speak to like minded people going thru the same thing as you and the support is amazing. My only advise to you is RESEARCH everything you can about this condition on the internet, the more you know the less you worry.

    Good luck in your conceiving, Im sure you will make a good Mum.



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    • Posted

      Thankyou very much! smile because it felt like it was in my teeth to start i went to the doctors just for them to be checked. Id never felt pain like it after i was told there was no infection but the teeth that were filled were badly decayed so he said he wouldnt know until i could pin point the tooth and to come back when i was in pain. Which never would have happened as the last place id want to go is to the dentist when i was having an attack! It was after that that i went to the doctors and they diagnoaed me and gave me a leaflet and put me on codeine. I had 3 weeks off work then lived as normal hoping it wouldnt come back. Then days before my attacks came back i didnt feel right. The heating at work had broken and i was cold and tense and i started to get the ache in my ear then a few days after that the attacks started again.

      I recently joined the tn uk site on fb thankyou smile i live in dorset.

      Once i manage to fall pregnant i will have something so positive to look forward to and will do all that i can to make sure i get through the next episodes with no harm to my baby. I was told there would be a 6 month wait until the mri but its april 19th so not too long and the blood test is next monday.

      I just want to be back at work. I feel stressed not being able to do an awful lot if im at home im normally cleaning and sorting. We have only been in our first home just over 2 months. But i feel tired all the time and hate not feeling productive. Last time in between my attacks i was filling out paperwork emailing the solicitors and financial advisor. Today all ive managed is to fold up the washing! I woke at 4.30 this morn in pain and had to take some tablets. Its hard as i know i cant take them more than 4 times a day so at some point i need to go more than 4 hours. Though i should be thankful im not having the attacks as that was a 1000 times worse and the medication didnt do a lot. Not the medication is helping with whatever is going on now smile

      Im due on the end of this week so no doubt i will feel even worse then!


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  • Posted

    I think you must go to the Dr and talk to him about the best options as you are trying for a baby. It must be terribly hard for you. The pain is terrible and very frightening with medication so without the right medication must be unberrable.  Take care, good luck and get to the Dr's. Ask to be referred on.
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    • Posted

      Thankyou. I am on morphine and codeine that is all that is safe but if the pain gets too much i have to go on amitriptyline which there is a risk with with pregnancy but when the pain out weighs the risk it has to be taken. Im not having the attacks anymore. They stopped after the worst week ever. I now have the issue with my jaw. I can only open ot half way my neck is swollen and tender and i have a massive gland up and it hurts to bite down sometimes i get a sharp pain. Im in pain when the medication wears off but i can manage when on the medication. It works for whatever is going on now but not with the attacks! Im just tired all the time!

      I have a blood test next monday and an mri on the 19th of april.


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  • Posted

    Dentists are not doctors and they are not surgeons unless they are listed as dental surgeons. Doctors are not dentists and are too busy nowadays to think.. or listen.. around any detail beyond their remit. This is why you are in this difficulty, it may seem ludicrous.. that is because it is. So your dentist told you that you had no infection. How much would you bet? Your symptoms are a concern, but I'm not worried about the TN symptom. TN is pain, that's all. 

    If your tongue starts to swell a little or any symptoms become more uncomfortable, or if you feel sick or start running a temperature, please go directly to A&E, don't mention the TN, and tell them you have a problem breathing. Then you will get the correct attention. 

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