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abbie199
abbie199

So basically I've been experiencing sharp shooting pains in my mouth, like stabbing, electric shocks. I've experienced this pain 3 times this year now. The first time it came out of nowhere and it lasted around half the day. The second time a few months after it happened again but stayed for 2 whole days!! Then the 3rd time was around 2weeks back now, that was my worst experience so far, the pain lasted for 4 days, so I bravely took myself to the doctors and told him exactly what I was feeling and where. He looked inside my ear and straight out blank said you have something called trigeminal neuralgia. That's it, that's all he done. He then put me on 100 mg of carbamazepine and said to increase daily.

So I got home and started reading into the side effects and none of them sat well with me as I already suffer from depression and major anxiety so I didn't take any, all of a sudden the pain has gone, vanished into thin air. I literally have no idea. I was hoping maybe someone has had the same experience? I don't know.

Also when I had the pains it was also like a tooth ache/ear infection. This feeling was constant.

2 likes, 32 replies

32 Replies

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  • tanis65622
    tanis65622 abbie199

    Posted

    I also have the sensation of an ear infection and it comes on fast and hard and disappears as quickly, sometimes lasting days, sometimes lasting minutes
    • abbie199
      abbie199 tanis65622

      Posted

      Yeah same, it was there for 4 days 2 weeks ago ever since its gone. The dull ear ache/tooth ache is constant, where as the shocks come and go while they last around 5 to 10 minutes some times even longer.

      Have you been to see your GP yet?

  • cathleen38205
    cathleen38205 abbie199

    Posted

    Yep, I could say exactly!  Where do you live? I’m in USA Illinois 
    • abbie199
      abbie199 cathleen38205

      Posted

      I'm from the UK,. Sometimes I wish I lived in America as I read that cannabis oil is good to treat TN?

  • Notrightnow
    Notrightnow abbie199

    Posted

    Did you ask the doctor how they can diagnose trigeminal neuralgia by looking inside your ear?   I have the same condition but I do not have that many stinging sensations, I have postherpetic neuralgia and intense itching.    Someone has offered to refer me to a neurologist.
    • abbie199
      abbie199 Notrightnow

      Posted

      No I didn't ask him, as I walked out and told my boyfriend he was like huh?? So I don't know that's why I made this thread as I'm not even 100% sure it is TN, I am around 98%/99% sure that I do though, also I read that is caused by shingles?

  • army183
    army183 abbie199

    Posted

    I don’t think the GP diagnosed TN by looking in the ear! Unless he was a witch doctor or something similar! 

    He looked in the ear and was able to discount the other possibilities such as middle ear infection, ear drum damage, ear canal inflammation etc. Hence he was then able to suggest that TN would be a candidate for diagnosis. 

    Your GP would not expect to make an unequivocal diagnosis on the basis of his preliminary clinical observations. This must be done by referring you to a neurologist/neurosurgeon who will take your clinical history and arrange a suitably detailed MRI. That will give you the very best outlook. 

    Get your GP to refer you - when you find that the appointment is weeks/months in the future ask the GP to refer you for a private consultation which will cost you abou £150 but you’ll get the answers you want quickly. Any treatment thereafter will be on the basis of the NHS, because you were referred first via NHS. 

    Good luck

    Big D

  • susan33651
    susan33651 abbie199

    Posted

    Hi Abbie,

    Regarding migraine and TN - yes they can occur at the same time. It's the Trigeminal nerve which gives rise to the pain in migraine although the cause is an issue with blood vessels either dilating or constricting (can't remember to be honest). I'm in the unfortunate position of suffering bilateral TN, one or more branches of the nerve may be affected at a time and often on both sides at the same time. I've had migraines since my teens and in the last two years they have either triggered the TN or been triggered by it. It's a special kind of hell!!

    I would urge you to take the Carbamazepine should you get more episodes of pain, if the pain stops it will confirm the diagnosis. You do eventually get used to the side effects. I still seem to be playing catch up, I just about get a few days of minimal stabs and shocks and then it flares up again. I take 1400mg Carbamazepine, 70mg Amitriptyline and a host of painkillers which reduce the number of attacks but not necessarily the severity of the pain, hence the hot water bottle, as below !! 😁 If you find something that relieves the pain stick with it, for me it's a volcanically hot hot water bottle. Also, insist on a referral to a Neurologist and an MRI (any compression may not show up but it will rule out any other sources of the pain).

    Persevere and you will find something that either stops the attacks or at least eases the pain.

    Best wishes

  • foz97121
    foz97121 abbie199

    Posted

    Hey Abbie

    I'm in a really similar situation and it's freaking me out! I had pains going through my ear a couple months ago but it wasn't that bad and it came and went so didn't think much of it! But it's got to a point where the past week has been so bad I went to the doctors and she thinks I've got TN or PHN as I've had shingles in the past, think I'm being referred to see a neurologist but that'll probably take some time. I've been prescribed amitriptyline(10mg) but haven't taken it yet cause I've been through depression etc in the past and managed to get through it without any antidepressant, am also worried cause I'm only 22 and have read that the tablets don't cure it just suppress the pain but even then the pain comes back apparently! Sorry that's quite a long message lol. How are you getting on? Any change/update?

    Also if anyone else can give me some advice on my situation I'd be very grateful!

    • abbie199
      abbie199 foz97121

      Posted

      Yes I've read something about having shingles in the past and getting TN, I guess we just have to push our doctors! I haven't heard anything from mine, since he gave me the tablets which I haven't been taking as I suffer with depression, along with many other things. I am only 20 myself and I can tell you now its only got worse for me, I don't mean to scare but I'm just telling the truth! Right now today I've woken up with the pain, after 2 months free of it ! Every time I think about it I cry, my pain is so intense I am really finding it hard to soldier through, and I just can not bring myself to have a tablet

    • foz97121
      foz97121 abbie199

      Posted

      Oh no I'm so sorry to hear you've worsened! I have finally got a neurology appointment but that's not till October so going to see if I can get it moved to be seen sooner. I haven't taken my tablets either and honestly I don't think I will because similar to youI've been through a lot of various different things in the past and really don't want to put myself through that. However I will say luckily my condition seems to have calmed down, not completely as I still get waves of pain especially when brushing my teeth! But I have been trying to do a lot of mind over body work if you know much about it? And that seems to be helping a tad, the reason I choose to delve into this is because I've also been doing a lot of research on TN and found there's not really a cure for it, so have decided to try mental and mindfulness work...worth a try as I have nothing to lose! If you want I can pop the link to the audio I'm listening to atm?...It's not specific to TN but is rather a general overview on how to heal yourself of any condition....the woman who made it had cancer and cured herself through thorough mind work, I know this isn't for everyone and some people might even find the prospect of doing this ludicrous but I just thought I'd let you and anyone else interested know cause I'd want to give everything a go to be healthy and pain free again! Hope this helps and you start to feel better soon!

    • Peteh
      Peteh foz97121

      Posted

      Mindfulness can ease the fear and anxiety that come with tn and help keep depression at bay. It is by no means an analgesic but it will undoubtedly reduce the suffering generated by such unforgiving pain. And all this from simply following the breath. Or giving your sustained attention to anything. I’m just 2 weeks post mvd . Some headaches ,nausea and incredible fatigue . But tn is a thing of the past  . My  god, where did that come from. If you’re about to undergo any procedure or surgery ,practice some simple mindfulness excercises and it will help prepare you for what may be some challenging times.

      many, many thanks for everyone’s contributions that have been of great value in my diagnosis, treatment and now recovery. I will continue to pray for you all. Peter

    • abbie199
      abbie199 foz97121

      Posted

      Hello, I have been trying to do the whole body over mind thing, it does seem it help with my pain.. Like I'm not thinking about it 24/7. I went back to the doctors today to tell him I can not take the tablets ( through depression & a phobia of taking tablets ) well he was not having any of it! He said you either take the tablets or you live with the pain, yes he actually said that to me! He stated that no neurologist will see me until I take the tablets! Wow I was speechless! He won't even send me off for an MRI/MRA, I've just been told I have this horrible 'disease' and left to figure it out for myself. I'm only 20 so I can't afford to go private! I think I'm going to put a complaint in against him, any advice to what to do next?

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