ATypical TN Coping Mechanisms

Posted , 6 users are following.

Hello everyone,

For the past 18 months, I've had pain and small nerve shocks in my face and head. GP and Neurologist has confirmed I have Atypical TN, bilateral. For the past few months, it's been bubbling away in the background, enough for me to be aware of it but the pain has been bearable and I did get the odd respite day where I felt almost human again.

However the past 3 - 4 weeks it has ramped up and it's now pretty awful. Burning, aching, electric shocks in both sides of my face and all over my head. I'm on anticonvulsants but I wondered if anyone could advise of any coping mechanisms to keep me positive through all this!

I've been going to Yoga class but unfortunately I think I will have to give this up. The pressure in my face is horrendous when I do various moves eg downward dog and cats pose. It's too painful to do those and I wonder if I'm making the pain worse by doing those stretches? So, has anyone got any tips to try, which helps mentally as well as physically? My GP is actually doing her best to help me but I guess you have to live with it to understand just how awful this disease really is.

Thank you in advance everyone X

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  • Posted

    Hi Pam, sorry to hear you're suffering so badly. After living with this condition for around 13 years now, I've found some pretty good coping mechanisms (but believe me it's taken a while!):

    Don't feel guilty about taking the time out you need to recover, be selfish about this (time off work, time off housework, time off cooking etc)

    Start to take this time out as soon as you get a flare up of your symptoms - don't wait until they take hold (I had many occasions in the past when I've ended up in tears at my desk - I don't let it get that far any more)

    Stay calm, as soon as the pain hits my anxiety level increases and if I can stay in control of this, the pain passes quicker

    If you're at work or in public, don't panic, just take yourself off to a quiet place (ie toilet cubicle) until you're in control, then make your way home

    I find deep, slow breathing with my eyes closed, trying to think of other things, helps the pain pass quicker

    Let people know about your condition and the symptoms - if you try to hide it or don't tell people about it, the anxiety is worse and this makes the pain worse

    Respect the pain, do what you need to do to help any break through pain pass quicker, but don't put your life on hold - suffering with this condition can be very depressing, isolating and lonely - but if you put your life on hold and shut yourself away, these symptoms will be worse which will make your anxiety levels increase, which will make the pain worse

    Finally, medication-wise, I've tried pretty much everything. I've had microvascular decompression surgery and I've tried acupuncture, but unfortunately I'm unlucky and have still got the condition. The medication that works the best for me is carbamazepine combined with a very small dose of amitriptylene on occasions when I'm struggling to control the pain with carbamazepine alone. But that's rarely these days, touch wood. I self-manage my carbamazepine levels, always trying to keep it as low as possible and increasing during pain flare ups.

    I hope some of this might be useful. Obviously this is just what works for me and I understand that everybody is different and will find their own coping mechanisms. I really hope your pain subsides to a manageable level soon.

    Take care.


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    • Posted

      Dear Anna,

      Thank you so much for your reply. I'm so sorry to hear you have had this condition for 13 years and that MVD surgery didn't work out as you had hoped, having read many posts over the past few months it seems to be that everyone has different reactions to medications, surgeries, etc and one form of treatment works for some but not others. It is such a complicated condition!

      Thank you for your wonderful advice, some techniques I've been trying recently myself, especially going somewhere quiet and taking deep breaths. I work in an open plan office so it's essential sometimes! 😮)

      I was thinking about trying accupuncture but I see it didn't help you and to be honest, I'm a bit scared to try in case it makes the pain worse. did you have any adverse reaction when you tried?

      Respecting the pain is definitely words of wisdom and not something I had thought about doing so I will definitely give that a go.

      I do wish I could taper off the meds as I hate them but I've tried a few times to lower the dosage and it just makes my symptoms worse so for now I need to persevere. My worry is that everything I've read on Atypical suggests that it never goes away, it is constant and over time just gets worse. So far, that seems to be the case with me.. I guess I need to hope that my experience doesn't get much worse and my level of pain plateaus eventually.

      Thanks again for taking the time to write, I wish you all the best and hope you have more good days than bad.

      Pam x

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    • Posted

      Hi Pam

      I will say, that although acupuncture didn't work for me for this particular condition, I'm still a great believer in it, and it definitely didn't make the pain worse. So I thought it was worth trying. I also work in an open plan office and it can be very stressful as naturally people don't understand the condition - you look fine, so what's the problem! 😃 It's taken me a long long time to stop stressing about work and phoning in sick, but I put myself and my health first now, and I must say, it makes it a whole lot easier! I'm lucky that I've always worked for supportive people, I'm sure it's not so easy for everyone. I've also come to terms with the fact that it's a long term condition, it doesn't appear that I'm going to get rid of it any time quick, so I've accepted that and do my best to manage the symptoms and get on with my life. But again, it's taken me a long time to get to that place. I don't know what sort of dose of medication you're on, but until just recently I had a long spell of managing on just 200mg of carbamazepine in the morning and 400mg before bed. This was amazing as I had hardly any side effects and felt like my old self again. I'm just going through some break out pain now and I'm back up to a high dose again, but I'm not stressing too much about it as I'll get it down again at some point. And I don't rush it - that's really important. I wish you all the best. Last advice....stay working if you can, keep doing your yoga when you're able to, and tell people about it. Send people the link to the NHS page on trigeminal neuralgia to help them understand what you're going through. Anna.

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  • Posted

    Hi Pam

    first off you have my full sympathy, TN is a vile condition. Reading of others experience i'm relatively new to it all....i was officially diagnoised 3 years ago and have been taking Tegretol since then, high dose of 1800 with 100 of Lamictal recently added! i am on the waiting list for MVD and just praying it will work for me. During real intense episodes of pain i found that walking (speed) really helped me...deep breathing and just going for it, maybe it was distraction but it worked for me and also i found my clothes more comfortable.....something positive from 'the beast'!

    i love all the advice that Anna has given and will be taking some pointers from it myself....keep strong and don't let it rule you.

    good luck


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