Some. Advice please!

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Hi have been to doctors this morning with severe stabbing face pain on the right hand side! This is after visit to dentist on Tuesday as i was convinced it was my teeth! The pain was unbearable over the counter pain killers didn't touch it!

 Doctor is treating me for shingles and TN!

200mg per day of carbamazepine for TN and Aciclovir in case it's shingles! I have been looking for rash around face in case it might be shingles, no rash but have broken out in coldsores around my lips which i get if run down!

  I am just looking for any advice because doing my researsh both these conditions seem very painful and reoccur! and I just hope that with this medication i will start to feel better?

 So i am back in bed and feeling quite down and a bit scared as i am also prone to depression! and it would be really helpful to hear any similar stories to mine? Doctor wasn't very helpful really made me feel as if i was wasting her time!

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9 Replies

  • Posted

    I'd say do as the doctors say, but ask for a referral to a neurologist. If it's TN, an MRI is standard to rule out Multiple Sclerosis. 200mg of carbamazepine is a very low dose. If it doesn't help you, definitely ask about increasing it. Google is your friend. Learn as much as you can on your own.

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  • Posted

    Hi there , I went to docs with exactly the same thing nearly 2. Weeks ago , I too had really bad stabbing and burning pains in face felt dreadful , she gave me a lie dose anti drpressant for nerve endings after 2 days stopped taking then as could not function , have 2 kids and work part time , so went to dentist and he has done a referral for me as he said I have TN , back to docs she seemed not bothered about it and said try these 200mg of carbamazepine which I upped th 300 mg after 3 days ,feel so tired on them thou , so will be back at docs now on weds 13th July too see what can be done as I am still have burning and stabbing pains , it feels like I want to rip my teeth out but my teeth are fine , my sister had something similar from shingles 5 yrs ago but gets pain when under stress , hope this helps fellow Welsh girl
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  • Posted

    Lucky you to get a doctor and dentist so clued up. I spent over £2k on dental treatment in agony over 6 months before being referred for investigation for the later confirmed TN. I had an MRI and have been on Tegretol for years and years - initially it was hell as I was on a high dose and almost a zombie - the best thing I did looking back was find a really REALLY good acupuncturist - the first session had me in tears within 24 hrs and I had to go back asap and she did another session and all the pain went…

    Not completely but as good as. Stress makes it come back and it's like a distant thunderstorm with faint lightning strikes and that's my trigger to back off the stress and up my meds slightly. You will get used to the Tegretol. I get cold sores and I am convinced TN is connected to the herpes virus.

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    • Posted

      I agree with you  Mike, I don’t see how anyone in a medical profession could doubt the link between cold sore virus and Tn given both cold sores and Tn affect the same nerve. Anytime I feel a cold sore starting I head off to the chemist for a one-dose cold sore anti-virus medication. At the same time I usually notice a small red rash along the main track of my Tn pain (nose to mouth corner) If the symptom s of shingles and Tn and mimic each other, they are all linked it seems to me.
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    • Posted

      Hi Valkyrie, I get pain across the side of my face and down my neck when I get a cold sore coming on (pre and post hepatic pain?) - I can't even think about shaving - that pain is also attributed to TN  - I often see posts elswhere about having to keep even mild draughts off the face of other sufferers. But full blown TN pain is on a whole different level.

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  • Posted

    Hi Clint Clare and Mike, thank you so much for your advice, and yes am doing my research on both shingles and trigeminal neuralgia!  Just lately i seem to be getting all sorts!!! I am 52 and in last few years it was discovered i am b12 deficient just recovering from an overactive thyroid and now this!!! Just fed up of being ill still i suppose it could be worse?

      I have had acupuncture before so yes might give that a go?

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  • Posted

    Good Morning from Australia, I agree that you must see a Neurologist asap and get this sorted. Tegretol is a drug that you gradually get used to but they use it a lot first-off because if, at the right dose it stops your pain, it’s one of the ways they actually decided that it’s Tn. You then have to have MRI’s etc to narrow it down conclusively. Your doctors and dentist were very clued in but their knowledge is limited because it’s not their specialty. No matter how good they might be, a Neuro is a necessity. Please keep in touch with us.
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  • Posted

    Hi again thanks for your replies!

    If it is trigeminal neuralgia can anyone tell me how long it lasts?

    I am confined to bed with no energy does Tegretol make you tired? I can feel also that pain in my face is just masked with painkillers when they wear off back comes pain!

    Being treated for shingles also! Wish I knew which one it was? At the moment researching both?

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    • Posted

      Hi Welsh Girl

      It is difficult to say - sorry not to be more positive. If you are being treated for shingles - of which the facial form is often the most painful - is yours facial shingles? You haven't had a definitive diagnosis of TN yet and I would work towards a diagnosis with your GP. Yes Tegretol makes you tired and muggy headed at first until you get used to it, so also does shingles. The last time my wife had shingles on her torso - the common form - she could be up and moving around, nothing strenuous, for about 4-6 hours and spent the next 24 hours recovering from the exertion.

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