Pain lasting 20minutes

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Hi, I'm actually posting on behalf of my Dad.  He's 69 and has had TN for 2 years.  The Carbamazepin tablets (2 a day) have been holding it at bay most of the time, he gets a few shocks per day.  But this past week it has got worse with him having several attacks that have lasted for minutes (in a restaurent and in tescos!) He upped his tablets to 4 per day but on Thursday he had an attack at my house which lasted 20 minutes.  The pain was continuous, then when it eased a bit he went ice cold and shivery (think it was shock).

I am looking for a specialist for him, but aso wondered if anyone else had experience of this continuous pain and if so what do you do?  He was so bad I thought I was going to have to call an ambulance.  On the bright side, the next evening he had recovered enough to go to my son's concert, without any attacks!

I want to be able to support him and am researching as much as I can, all your advice and posts have been very helpful.

Thanks

Tracey

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14 Replies

  • Posted

    Hi Tmg

    Im so sorry your dad has to go through this. What dosage is he on, 200mg? So if he's on 800mg per day maybe he needs to increase the dosage slowly per day until he's at the stage where he has a maximum that is suitable for his pain. 

    Ask his GP to refer your dad to see a Neurologist.

    When I first had TN I nearly hit the roof. I couldn't talk, I had stinging pain on my tongue and the awful electric shock going through my right jaw and teeth. Eventually the medication kicked in, but I reached 1200mg a day and had to have Amitriptyline at night.

    Maybe when your dad has been on the tablets for a while it will all settle down.

    How is he now?

    Kind regards

    Gloriana

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    • Posted

      Hi, Thank you for your reply.  just checked with Dad and he was managing on 200mg per day, he found if he took 300 it would knock him out the next day.  But now he has upped it to 300mg per day, and after reading on here I have told him to make sure he spaces the tablets at regular intervals.  The past few days he has upped the dose to 500mg to try and keep the attacks at bay.

      The dr just said to keep taking the tablets!  I now have a referral to a specialist, but am trying to research the best one to go to.  There aren't any in our town and we're willing to travel to find a good one.

      Gosh 1200mg is much more than Dad's on, I think Dad finds it worse when he can't talk.  I have said I'll do him a card so if he has an attack in public at least he can show people what's the matter.  

      Hopefully this bad attack might mean he goes into remission for a bit? 

      He managed to go to the football match today so that's good.

      Thank you for your help smile

      Tracey 

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    • Posted

      Hi Tracey

      I agree your dad should take regular doses per day, say 150mg morning and night or 100mg three times a day. When you say your dad increased his dosage to 500mg a day, is that on the Drs advice?

      If your dad is spaced out the next day, he could try taking his tablets after food.

      Also if your dad takes his dosages at regular intervals he will soon find it easier to talk. 

      Thats a good idea with the card.

      It sounds like your dad is managing to do everyday activities which is really good.

      Let us know how he's getting on and good luck with the Neurologist.

      Gloriana

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    • Posted

      Hi

      The Dr said he can adjust his dose up to 800mg per day.  He doesn't like taking tablets though so has been trying to keep it at a minimum.  I'll tell him about the food, hopefuly that might help.  Thank you 

      Trace

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  • Posted

    Hi Tracey

    Best be guided by your GP as self diagnosis is not necessarily a good thing.

    I have had facial TN for over two years with varying levels of pain. My main issue was a massive headache plus the shooting facial pains.

    I am on ox Carbamazepine which I find much more effective that just

    Carbamazepine. I am om 100Mg od Lyrica 3 times a day for the head pain but I am finding I can often drop the midday dose and ox Carbamazepine 600Mg 4 times a day for the facial pain. It has taken over 12 months to get these doses right.

    I am seeing a Neuroligist as well and am scheduled to have a neck CT scan next Monday followed by a MRI and hour later. I have had a bowel cancer removed and they are trying to prove/disprove that this is all associated with that. This started over two years ago and if it was associated with the cancer I would be dead by now but they find that hard to believe.

    They want to burn the nerve with with a hot needle but can't make their mind up what is causing it.

    Anyway, back to your isssues, back to your GP, be forceful and make him go through all options. If I hadn't banged the table he wouldn't have got as far as he did looking at the options.

    Good Luck

    Ozzi

     

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    • Posted

      Hi Ozzi

      What is Ox Carbamazapine?  

      Dad's been adjusting the dose for a while, reading on here I think the tablets need to be taken at more regular intervals, rather than when he feels it coming on. He had been doing pretty well up until a few weeks ago, I notice that it is often triggered by weatehr changes but this bad attack didn't seem to have a trigger.

      Thanks for the advice about pushing for help, the gp wasn't that bothered about referring him until I pushed.  I just need to find a good neurologist now.

      I hope that all goes well for you on Monday.  I have read that stress can trigger the onset of TN?  I also read on here that the hot needle thing is meant to be quite good.

      Good luck

      Thanks

      Tracey

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    • Posted

      Hi Tracey

      ox Carbamazapine is a subset of the original and I find it works much better. The doctors don't like it because it is about four times the price of Carbamazapine and of course that has a negative effect on their margins and reduces their income.

      It is an unfortunate fact that often patients aren't offered certain drugs because of the costs involved. I researched the ox Carbamazapine and raised it with the GP and under sufference he prescribed it for me. If I hadn't been insistent then it would never have happened.

      Do your own research and then be forceful when dealing with your GP.

      Ozzi

       

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  • Posted

    Hi Tracey, I have recently being diognosed with TN, my pain is along the left hand of my Jaw, continueing to the joint of the bottom jaw to the top of the Jaw, and alondg the top of my temple, pain is sever, and the Carbamazepin 200 mls twice a day, ease the pain , but does not fully go away, satrted the medication on Monday, by Thursday, i felt very un well, and slurring my words I attended A and E and they thought it was a stroke, thankfull it wasn't then the thought it was neurilogicle stayed in hospital till this afternoon, it scared me, had all the scans all clear, but just have to wait for the result of the MRI .

    Cheer's Dawn

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    • Posted

      Hi Dawn

      Mine started similarly and it took ages to get the pain relief right

      I found that going to ox Carbamazepine was better than the Carbamazepine with less side effects. Also it NEVER touched the temple pain, I had headaches that would kill a brown dog as they say in Australia, and I ended up on Lyrica to control that. Seems one drug just will not do the whole job well in my case anyway.

      Talk to ypour GP and see if he can find a separate solution for the head pain and stay with the Carbamazepine for the shooting pains in the face.

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    • Posted

      Hi, they think the head pain caused my brain to react the way it did, causing stress and anxiety my headackes are severe and will give the Carbamazepine a go for a few weeks, with paracetomol just cant believe how painful it gets. 

      Cheer's Dawn

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    • Posted

      Hi Dawn

      They gave Tramadol for the headaches but that us quite adictive so I avoid using it. The Carbmazepine only ever solved the shooting pain in the cheek for me. As soon as I started the Lyrica (also a nasty type of drug) the head pain disappeared and the world started to become a place to be again. I hope You find a result for all of your issues soon.

       

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    • Posted

      I have co-codamols, for another complaint but they are way too strong, I am on the sick this week, and having another week off, need to get the pain and medication under control so I can return to work.

       

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    • Posted

      Hi Dawn,

      I hope that you are feeling better.

      I have read quite a few of the posts on here and there's lots of good help and advice.

      Good luck with the Mri results

      Tracey

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    • Posted

      Feeling better todday, and spoke with my own DR, and he has explained things and he said that I need to increase the medication as that will ease the pain, I was taking paracetomal to ease the pain, I feel confident in the medication now and have started to increase it and will do untill the pain stops. It does help chatting with people on here. Thanks Tracey 
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