Diagnosed with atypical trigeminal neuralgia

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Finally seen neurology and confirmed diagnosis of atypical trigeminal neuralgia waiting mri neurology changed my carbamazapine to slow release tegretol I'm on 400mg am and night and 200mg in afternoon I'm still struggling with breakthrough pain which consists of migraine type pain above left eyebrow burning stinging pain around left eye and annoying facial pressure it varies from feeling like I've been to dentist and the weird sensations you get right before local anaesthetic works but this pressure goes from right side to left it is associated when I drink warm drinks but it's also present without any triggers it actually feels like someone is kneeling on my upper gums and lower face it only used to be bad on lying down but now it's there when I'm sitting and even standing does anyone else get this I've had a ct sinus but no results yet but my neurologist was confident it's all neurological

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  • Posted

    I haven't tried slow release tegretol as my neurologis said the side effects were awful but living with the pain is awful....it's weird as when i wake up in the morning it's gone...then by 10am it starts to come back and by 2pm it's awful and i hate it ...starts at my upper lip and is luckily only on one side of my face but b/w the pressure that you cannot describe to people and the pins and needles burning, weird eye pressure pain...i hate it! i know that exercise will help me but b/c i'm in a lot of pain hard to get up the energy...  i at least know what caused mine.  I'm sorry you don't have a cause for yours.  How old were you when it started? and when you started tegretol do you remember how quickly it was before it started to help? i should at least give it a try!

     

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    • Posted

      Hi there my neuro changed me from normal release to slow release cos she said side effects were less?? Mine all started 6 yrs ago as a classic tn in my left side each episode used to last 3day on average then it changed to a more type 2 with the facial sun burn feeling shooting sharp pains sensitive eye and ear pain but last year the gaps between the episode s lessened and in December it came and stayed sad I've been getting right sided pain and pressure but not at the same time thank god my neurologist said this is classic of tn and it's not uncommon for it to develop into type 2 and involving both sides
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  • Posted

    Hi Vicky,

    I know the pain and weird sensations you have described very well! At the mo I'm just starting to get some relief from the many drugs I have taken to stop the pain but the eye pain just won't go. It's like a super hot knife wuth electricity running throuh it and then there's the eyebrow beoing stabbed and the spikey footed speider crawling over my cheek. (I know I've missplelled some words but I can't focus on which ones to correct them, and frankly I dob't care right now - my inner grammar-nazi is fuming!). The tingling is weirdly only affecting my ear lobe?! I have only recently been started on Carbamazepine and I'm taking 100mg 3 times a day, which I know is a reallly low dose, but I already take a drug for autoimmune disease which can also affect my liver so I have to be really careful, my GP is fantastic and hads been very understanding in dealing with my problems in recent years. I joke about moving into the surgery, I think they've finished decorating my room!

    I do have triggers -  mainly the cold. especially cold wind/rain/sleet and so on but also yawning and sometimes chewing certain foods. I think I need to get the doc to refer me to a Neurologist if we can't get this under control soon.

    Hugs to all fellow sufferers.

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    • Posted

      Hi there Susan if u live in uk u need 2 get gp 2 refer u to neurology as I had to wait 4 mnth it was her who put me on tegretol slow release as she said they have less side effects if u av 2 av a low dose tegretol u could try gabapentin they help for the burning and stinging pain they didn't agree with me but they might be a godsend 4 u x
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    • Posted

      Thanks, Vicky,

      I take Amitriptyline for neuropathic pain anyway, the dose was increased by GP which helped a little with some aspects of TN but not so much when eye affected. Have discussed referral with GP, we decided to give Carbamazepine a little while longer to do its thing and then reassess. It's only been 3 and half weeks since starting it. At the mo this current attack is subsiding. I have had some relief from Carbamazepine in the sense that the attacks are waaay shorter, before starting it they would last on and off for 6 or so days with relentless pain in my left eye, this one has lasted about a day and half, so bonus! All the other pains (shooting electric shocks, stabbing to scalp, cheek and the thump to the jaw have also lessened) and I'm not getting those pains so often. Both sides of head and face affected, left is worse than right, currently only the left eye and right jaw are affected with tingling to left earlobe (they take it in turns to hurt). I have a blood test next month and if liver function ok then GP will increase dose some more and hopefully will do referral then too. The other drug I take which can adversely affect the liver is Hydroxychloroquine (can also damage retinas) for autoimmune disease (possibly Lupus, still waiting for definitive diagnosis on that!).

      Thanks for your concern, but I was only really intending to share my experience of the eye/eyebrow pain with you! So many folks have been incredibly kind and helpful on this site for both of my problems and I am immensely grateful to you and them.

      Hugs galore.

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    • Posted

      The right side of my nose burns constantly. I get stuffy and post nasal drip. But the burning pain is horrible and it only stops wen I sleep. Nothing stops the pain. It subsided for 2 yrs then came back after ingesting peppermint essential oils. Susan do you think this could be atypical tergeminal neuralgia?
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    • Posted

      Hi, Marco,

      I have had a really crappy week with combination of sinus and chest infections in addition to the TN and a flare of the autoimmune problem, and I might have a fractured wrist, so yay!! Anyway, back to you and your problem.

      Classic TN comes and goes but ceases when you sleep (weird, and no one knows why!). ATN (atypical) is usually present all the time and is considered to be less painful. Without a thorough list of your symptoms and a consultation with a specialist a diagnosis is difficult to make, plus I am a nurse not a doctor. However, I would be inclined to agree with you that it is ATN.

      Essential oils are very concentrated and I suspect that the aroma triggered a response in the nasal part of the nerve resulting in the sensation you're experiencing. I would avoid repeating the ingestion of peppermint oil in the future!

      I have had a much better time of things in the last few months, with the exception of the last week! The Carbamazepine has been steadily increased and I now take 1,100mg per day in divided doses. So to you and everyone out there with newly diagnosed TN, ATN or any sort of neuropathy affecting the face, please persevere because there is light and relief at the end of the tunnel.

      Best wishes.

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    • Posted

      My mother gave me some herbs and the burning disappear I feel healed. Much better than taking meds that I got from doctor. The pain killers that I got didn't do anything to stop the pain. But my mom insist I should use herbs because pills don't work all the time. I feel great. I just hope it will last. My sinuses was always blocked and felt confusion, constant burning. Nothing would stop the burning. i am sorry what happened to you. The constant burning had made me depressed and the more depressed the pain felt more intense. There is always hope don't give up. I wish I could tell you what kind of herb I took but my mother bought it from a man that I should drink it and it destroys all problems in the body which I never believed in herbs only in doctors.

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    • Posted

      Hi Susan,

      I've just joined this site and have been reading through the threads looking for some ray of light. I was just diagnosed with TN by my GP about a week ago. I'm wondering how long you've had this dreadful disease and how you are doing. Mine seems to be of the typical sort. It's on the left side and runs along my upper and lower jaw and my ear. I'm not surprised by this as I've had migraines on that side since my son was 6 months old 28 years ago. I've just been taking 200 mg of Carbamazepine 3 times a day for about 6 days now with side effects like being in a fun house. I feel like the floor moves back and forth while I walk and I've been quite loopy as well. Please, please tell me there's hope. I'm quite a strong woman and been through more than my share of pain, but this is on a different level! I'm grateful for ANY advice you can give. Thank you Susan.

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    • Posted

      Hi,

      It is tough coping with this condition. I first had symptoms on the left about 10-12years ago. But I just thought it was a variation of migraine. Over the next 8 or so years the pain got much worse, more frequent and began to affect other parts of the left side of my face and scalp. It got so bad that the pain medication I was taking had no effect. I resorted to taking drugs that my husband had been prescribed, namely Tramadol and MST. And I was still taking the Paracetamol and Ibuprofen! And nothing worked. I was getting episodes of pain on and off throughout the day in the hundreds, and I had some days when the pain was relentless because all three branches of the nerve on the left were active in a cyclical random pattern. I would be incapacitated for up to 18-20hours!!

      Then the right side joined in and some days both sides would be active alternately.

      I went to the GP, told him everything, and he said straight away that it was TN, and that bilateral TN was rare. The Neurologist I saw recently confirmed the diagnosis. He also said I have migraine (I knew that!!) and Stabbing headache syndrome!! Oh joy.

      So, long story short........... I now take Carbamazepine 4 times a day (400, 200, 300 & 200 mg)and Amitriptyline 50mg every night. In the event that the stabs and shocks I still have continue for a while or become pain fests I take an additional 10-20mg of amitriptyline, Oramorph, Co-codamol 30/500mg (2) and Tramadol 50-100mg and use a seriously hot compress. I also don't eat, drink, move, wash, clean my teeth or talk during these episodes! They are now less often and last 8-12hours at most. An improvement of sorts! But on a daily basis I am getting far fewer stabs and shocks.

      I will need to increase the dose of the Carbamazepine, but I have to go slowly because of the other drugs I take for autoimmune disease. Generally speaking I can deal with the odd pain here and there as they are very shortlived, but when the eye or eyebrows are involved I become a static pill popper!! Overall I am much better but still have a way to go to become pain free. It has been just about 15 months since starting the Carbamazepine. From the reading I've done it seems that many people have to take the drug for a while, sometimes years before remission. They seem to work better with classic TN.

      My advice is to set an alarm and take the drugs religiously, and hit the pain with everything you have! There is light at the end of the tunnel. With every dose increase I get a period of feeling weird and sleepy but it soon passes. If you know what triggers you have, avoid them like the plague. Be aware, though, there may be a few triggers lurking about that will surprise you!

      If you have any other questions or need advice you can send me a message, just click on the envelope icon on the top of the page.

      Best wishes

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