Symptoms of TN?

Posted , 5 users are following.

Last April I started with tingling in my left cheek and my top lip, sore left ear - went on tegretol 100mg- was fine for a while, those symptoms came back two weeks ago, put on 200mg of tegretol, which has eased those symptoms a little  but I also have what I can only describe as a pressure headache - only time all symptoms eases is in the bath or when I'm asleep!  I really do not have the pain you all mention but this feeling in my head as mentioned before. I have only been told it's TN by my GP but no other tests carried out, i suppose I wonder if my GP is right as the symptoms are scary.  I'm 57.  Any thoughts on this would be great and my heart goes out to all those with TN, it drags you down. 

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8 Replies

  • Posted

    Hi Jean,

    Welcome to the forum. I'm sorry to hear you're in pain and it does sound like TN. But as everyone is different with their symptoms, some a slow build up and others with a fierce attack of pain which can and is excruciating for them. You could ask your GP to refer you for an MRI scan and/or see a Neurologist. This will rule out any other underlying problems you could have. I personally didn't get the headches as I recall, but I do know that when my TN returned the last time it wasn't as bad as it was in the past, but bad enough. I know there can be different levels of pain and symptoms, so I would be inclined to request further tests.

    Let us know how you get on and good luck.

    Kind regards

    Gloriana

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    • Posted

      Thank u Gloriana for getting in touch, I've to visit a consultant 6th Oct about another matter so will ask her what she thinks.  Truth be told I have wondered if he's right, with him just pressing on my head etc., when I went back the other day he took my blood pressure, which was grand, mind you on the funny side, he pressed behind my left ear and I let such a roar out of me he Receptionist came running  in to see if all was OK 😆 he also told me to go get bloods done in a few weeks, which is next week, so hopefully I will get sorted. Thanks again Jean.
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  • Posted

    Ask your doctor for an MRI to ascertain whether you have TN. You should be able to see an area unlike its opposite side.This is where your neurosurgeon will show you where vein crosses nerve. Best wishes.
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  • Posted

    Hi Jean

    So sorry to hear you a fellow TN sufferer. I too am on Tegretol, and I to struggle with horrendous headaches.  I have similar pain to you, cheek, jaw, neck and ear.  Some days the headaches are so ferocious I feel like my head is trapped in a vice.  I take co codemol (500mg) and it usually does the trick. I go to sleep with a headache and I awake with one and its all day pain. I’m not sure if it’s a side effect from Tegretol or it’s just the TN. My Dr prescribed Amitriptyline to take at night and they have not helped. He didn’t seem to think the headaches were strange at all and when I suggested a referral to Neuro he looked at me like I was mad and this was just something that goes alongside TN..!  Pls keep me posted on what you discover about this when you have your appt. 

    I also have realised that if my body temperature rises they get worse. I find being outside in the cold a huge relief.  Being stuck in doors with the heating on or in the sun makes it so much worse.  Going for a walk with my dog does help for a while. Paracetemol works too. I alternate between the two, co codemol and paracetomol.  For the last 6 weeks I have been in pain, but strangely today I awoke with no headache for some reason…!!!??. I have been going to bed earlier and earlier and perhaps it’s because I’m getting more sleep. Who knows, every day with TN is a struggle and a mystery.  What works today doesn’t tomorrow so I just go with the flow and enjoy each day as it comes. 

    Hope you feel better soon :o) 

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    • Posted

      Thanks for your story also for making me smile, why?  I think my GP is related to yours, I got that look also!  I sometimes wonder if our doctors had a week of this would they be so "ah sure that happens". I was also told to stop "body surfing" every morning I wake up, as in checking to see if the tingle is still there, kinda hard not to when it's in your face, all now I need to be told is "its all in my head" - lol.  Have to say it is so good to know I'm not the only one with this, not that I would wish it on anyone, it's not good.  Will keep u posted.  J.
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    • Posted

      Yes its very comforting to know your not alone :o) I found my GP to be very caring and understanding in the begining but now its a case of... just take your medication and go away...!! Charming!

      I like that "body surfing" I can guarentee you, all of us open our eyes each morning and body surf. Once you have been thru the horrendous pain of TN, every day you open your eyes and you not being poked in the face by an electic shock is a huge relief.

      Its not in your head...its in your cranial nerve lol

      xx

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    • Posted

      Hi- well my headache has gone 😀 I have now changed tablet because I have too many side effects from Tegretol.  I was like a drunk person when the dose was upped etc.,  I'm now taking Lycria and while I'm only in day 3 so far I've no side effects,,thankfully.  So this is where I'm at, 2 GPs one consultant (thyroid) all agree its TN, loads of blood tests and again thankfully, all clear.  So hopefully it keeps going as good as I'm today with just a little pins and needles on my top lip. It's the loveliest feeling and I wish I could pass it to all suffering from this THING! J.
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  • Posted

    Jean, you seem like such a trooper!  It's great to see that you have maintained your sense of humour, as I really believe it does wonders for all of the "hiccups" throughout the day!  I have been sick for more than 7 years, and I'm only 31.  First it was Gastroparesis, then I was also diagnosed with dystonia, and just last week my neurologist confirmed my suspicion that I now have TN.  It's daunting when you start and then continue, to feel like a patient number.  But seeing that there are others who are experiencing similar circumstances is both unfortunate and a relief. we know we're not alone, but wish that none of us had to endure this tremendous amount of pain.  However..... there's a huge difference between pain and suffering!  Maybe through this support network we won't have to experience the latter of the two.

    I hope you continue to feel relief!  And as you are able to now take back your life, sharing your story will most definitely help others.

    Be well <3>

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