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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.

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  • Posted

    So sorry to hear that.  Find yourself a more compassionate doctor who will refer you to a neurologist.  You should also have an MRI on your brain.  Take care and I hope you get relief soon.
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    • Posted

      Thank you for your reply.

      I am 20 years old and from the UK, I haven't been taking the meds like I said in my earlier post so I'm very anxious about what the doc would say and if they think I'm just being crazy! Haha, also is it an MRI or an MRA?

      I am at a complete stop in my life now he has told me this as I am not good with taking tablets and I am certainly not good with surgery.

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    • Posted

      I’m from Australia so an MRI here is a scan of your brain and they may put a dye intravenously whilst they do the scan.

      I took Tegretol and lyrics and it stopped the sharp pains but I have a dull ache all the time but I can manage that pain.

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  • Posted

    Hello Abbie. For a diagnosis of tn you really need to speak to a neurologist. Their first investigation will be your own history together with an mri scan. The mri as in my case is not always conclusive as the blood vessel touching the nerve is not obvious. In which case the patients history and continued description of their symptoms can be enough to make a diagnosis. I’ve had tn  for 3 years and have gone into remission each year. The periods of pain have usually lasted for 3to4 months. I’m one of the lucky ones who are able to manage the pain to some level with carbamazepine with the expected side effect of extreme fatigue. But I’m noticing now that the periods of pain relief are becoming shorter. I suffered from depression for many years and was very nervous about taking carbamazepine. I’ve been on them since March and I’m still here. Sadly this is a slow process from diagnosis to cure. So take a deep breath ( not to deep if it hurts) and be kind to yourself. Regards pete
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    • Posted

      Hi Pete thanks for that, yes an MRI is a brain scan here to but I've read online that an MRA is for blood vessels and is really good for things like this matter. I just don't want to go the docs after 2 weeks him saying I have this and act all crazy, truth is I'm s***ing myself (sorry for my French) I wish he never said this as all I've done since is read forums and good things. I'm at a lost as I am very very petite, fatigue, I have low iron, I have bad asthma and I suffer from mental Illness (depression and anxiety).

      Question for you, did you or do you know of anyone who has suffered migraines? Because before this year I used to suffer a lot, blurred vision, nausea, terrible temple pain but since this year instead if them ive got this nerve thing.

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  • Posted

    Joanne is absolutely right. You will get nowhere without a neurologist appointment and a real clinical diagnosis by MRI. That will open up a range of options for you and your medical team to consider. 

    Good luck

    Big D

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    • Posted

      I know its hard for me to do this as simply as you all say do it haha, its even harder when no one believes me, I've had people say oh its so rare you won't have that, or the pain is meant to make you drop to your knees you don't do that. When this is obviously not the case, I've read thousands of people have this not just in the UK but in the world also I've read forums and its like 1 in ever 5 on the comments experience that type of pain where they drip to the knees. I think I just made this forum as a peace of mind.

      I am 98% sure I have this tn, my gut tells me that I do

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  • Posted

    Hi Abbie, I have TN i was reading the other posts, get an MRI with contrast but even then it can come out clear. TN can go into remission and than pop up all of a sudden. I would find a good Neurologist who knows all about TN and also go on Amazon there is a a book called “ Stiking Back” to us TN survives it’s like our bible. I knew more than my damn Neurologist knew and he went to medical school🙄.. without my meds I seriously would have completely lost it. Yes they keep upping my dose so I am in complete brain fog and when I can’t talk I do simple sign language to my husband. Much blessings and prayers to you. ??

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    • Posted

      How do you mean find a good neurologist? Doesn't the GP just refer people to one? I'm in the UK and we have the NHS. Also like I said in previous post I haven't been taking meds, can I go to the GP and demand a MRI will he take me seriously? As they are the bloody ones who told me I have this ! I have millions of questions just no one to answer them 😔

      Anyway, I'm glad you are sorted and well. Thanks for the reply 💜

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    • Posted

      Hello folks

      I think Cary meant that you should request your GP refers you to a neurologist/neurosurgeon. They are the ones that will book you in for MRI (and that will be in their own hospital andbe of the correct quality/standard to suit their purpose of getting a clear diagnosis). The neurologist will also go through the drug and other treatment options with you - and because he/she will be an expert in this area (by definition !) they will cover all your areas of concern and answer absolutely all of your queries.  Make sure you take a written list of all your questions because you’ll forget something important otherwise. 

      One thing, if it takes ages before you can see your consultant neurologist at hospital (as happened with me) then ask your GP to contact them for a private consultation. You’ll get an appointment rather quickly and it will cost you about ) £150. BUT, all future treatments and consultations will be on the NHS system because you were first referred via NHS. 

      I think you’ll agree that it’s worth a few quid to get a clear diagnosis and all that support focused on your case. Not sure where you live but there are several centres of excellence for our condition. Just google for neurosurgeons at your nearest large teaching hospital and choose the one(s) that have TN as a speciality or an interest.  Actually, your GP should know who to recommend. 

      Good luck

      Big D

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    • Posted

      An MRI usually never shows the nerves twisted. They do MRI’s to rule out other factors as MS or Tumor. Get on FB there is an awesome support group called FPA/ official Trigeminal Neuralgia awesome people and such a strong support group and can help you since all of us have been dealing with this horrendous disease, much prayers??????🙏🙏🙏

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    • Posted

      Thank you I am in brain fog with the meds. But if you read the book which is our Bible called striking back yes MRI’s are done but a lot come out negative until you decide to have MVD surgery and they go in and are actually able to see the nerves twisted around. 
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    • Posted

      Classical TN type 1 is the result of a branch (or branches) of the cerebellar artery compressing the Trigeminal nerve root. Sometimes it can be a vein, as some have said on here. 

      If you have a proper MRI then compression of the nerve root (and probably some demyelination of the sheath) will be seen easily, by those who know what they’re looking at. My neurosurgeon was very “happy” when he called me in to see the scan. He said the vascular compression was “beautiful” (not a word that I might have used) and he showed me that I had about 70% of the nerve compressed. On that basis, MVD was the bright light for my future, and the rest is just history. 

      In MRIs that don’t show or confirm an obvious compression, then there are indeed both other diagnostic possibilities such as TN2 and MS and cerebral masses but they will be very obvious and the patients clinical history will support this. Further, the treatment options are varied even for classical TN1; doesn’t have to be MVD, there are many others. The clinical evidence-base (or clinical database) from thousands of cases is huge and all consultants know it very well. They can use this in addition to their own experiences and comment truthfully about success rates, adverse effects, likelihood of long-term remission etc.  After all, that’s what they do for a living and they will ensure they give you the best advice.  My neurosurgeon and his team had done about 300 MVDs when I saw him - so choose one with big interests in TN and surgical experiences. 

      I’ve a feeling that a lot of your anxiety will disappear as soon as you’re referred to a neurosurgeon and he makes a real and true diagnosis which will inform about treatment options. In the end, it’s up to you whether you follow any treatment at all, but I’m sure you want to know the real facts before you decide on actions. 

      Sorry this is so long, but I feel great sympathy for your distess and the quandry  you’re in at the moment.  

      Keep safe and good luck

      Big D  

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    • Posted

      Abbie I am not a doctor and I don’t know how it works in the U.K.  But here a Neurologist is your best bet. Have your GP refer you to a Neurologist that way the Neurologist will order the MRI. Get the book “ Striking Back” it is our Bible on TN. Having an MRI rules out MS or a tumor. Sadly it’s hard to detect the twisting of the nerves. Does your GP have you on anti-seizure meds? 
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    • Posted

      Thanks for the reply I'm from the North west UK Merseyside. GPs round here don't help to be fair, they just put you on tablets and off you go. It was my first appointment with the GP and he said I have trigeminal neuralgia, he only told me to go back if my eye sight keeps going into double vision, point is they don't help and I'm only 20 so I can't really fork out to go private 😔 but I'll be sure to ring my GP on Monday and see what they have to say

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    • Posted

      You definitely need to start on them, believe me I hate taking meds and it takes time to get used to them. If he started you on a low dose that’s good. Your body needs to adjust to it. I am on Neurontin and I will tell you it’s kicking my ass. I am now up to 1800mg so pretty much in a zombie state but it will subside in a month. It has helped with the shocks though. Now the constant throbbing is a whole other issue since I have both TN1 and TN 2 painkillers helps the second one. But since my Neurologist is a dim wit and I know more than he knows he diagnosed me with TN. So he and I will be having a chit chat next time I see him. Please if you can get on Facebook in join the group that I sent you the link of. Awesome support group and many people who have suffered from this disease can really give you good advice..take care sweetheart ????🌹🌹

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