I'm Trish from Cheshire England. I have been diagnosed with TN a few years ago but it has flared up really bad. I'm hoping to find how other people cope with TN. I am in agony and feel so desperate with the pain. I'm on Carbamazepine and it makes me feel dreadful and not really helping. My Doctor gave me codeine for pain relief but that just makes me sick, feel dizzy and faint. I'm also a bad asthmatic and just recently been in hospital with a bad asthma episode so all in all my health is bad at the moment.
I'm moving house in a few weeks and have a lot of personal problems which I'm sure isn't helping my stress levels. I hope you're all coping with whatever pain your suffering and hopefully in between packing I'll be able to pop in and out on here when I can. I apologise for any typing mistakes I am messaging from my mobile phone!
I don't have any great ideas for dealing with TN, but I do urge you to call your doctor. Ask a friend or family member to call if talking is too painful. Hopefully your doctor will help you find the right medicine(s) for you.
My combo helps for a couple weeks then needs to be changed. It seems I need to keep my doctor on speed dial!
Wishing you better health and a smooth transition as you move.
I'm sorry the medicine isn't helping you. I am pretty much brand new to this, so I don't have much advice except that music can be soothing, and I prefer dark rooms without any air vent nearby when I am in pain. I hope you find the right treatment soon.
Hi, Trish. If you're miserable on your medication, you should notify your doctor and try something else. There are several different anti-convulsants to try. I reacted badly to several different ones, and I said I wouldn't try another. I'm also allergic to gabapentin, which is typically prescribed for nerve pain. I finally got relief with a tricyclic antidepressant. Then I got gamma knife surgery in early March 2016 and it gave me great relief. Stress doesn't help our situation, either, but I know it's not easy to get rid of stress, especially during a move. Try some relaxation techniques (deep breathing exercises, meditation/prayer, yoga). Try to stay positive -- come back to this site to know you are not alone.
Thanks for replying! Yes I think trying to relax in a dark room is soothing. I've not tried music but I downloaded a meditation app and it actually helped me.
I hope you're OK and I know it's just dreadful when the pain is at full force.
Warm wishes
Trish MelissaK said:
I'm sorry the medicine isn't helping you. I am pretty much brand new to this, so I don't have much advice except that music can be soothing, and I prefer dark rooms without any air vent nearby when I am in pain. I hope you find the right treatment soon.
Thanks for replying. I'm glad you have found relief. I will look into gamma knife surgery aswell. I actually downloaded a meditation app the other day for relaxation and as you recommended it does help!
Wishing you well.
Trish
CindyLou said:
Hi, Trish. If you're miserable on your medication, you should notify your doctor and try something else. There are several different anti-convulsants to try. I reacted badly to several different ones, and I said I wouldn't try another. I'm also allergic to gabapentin, which is typically prescribed for nerve pain. I finally got relief with a tricyclic antidepressant. Then I got gamma knife surgery in early March 2016 and it gave me great relief. Stress doesn't help our situation, either, but I know it's not easy to get rid of stress, especially during a move. Try some relaxation techniques (deep breathing exercises, meditation/prayer, yoga). Try to stay positive -- come back to this site to know you are not alone.