Struggling

After putting down two glorious pain free days I am now in agony. I nearly, very very nearly had let myself believe that my flare up that started the day after TN awareness day, October 8th, had come to an end.
Am I the only one that gives themselves this false hope if they have a good day? And let myself be crushed with not only the pain but the disgust that it hasn’t gone away? Will it ever just give me a brake!
26 years old since the 26 of November and really am dreading a life time of this. Surgery isn’t an option for me because there was nothing in my mri.
My medication is lyrica, after a bad reaction to tegratol. Is there something else I can take with it that would help? I’d try anything at this point. When it leaves you for 2 days, you forget for a split second just how horrible it can be :frowning:

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You might investigate Trileptal or Neurontin with your neurologist. Both have significantly less severe side effects than either Lyrica or Tegretol. You might also be tried on a combination of one of those two plus Baclofen or Phenoitin. Mood swings and depression aren't unusual for chronic facial pain patients. If you are really down and dark, it may be useful to talk with a psychologist or pain management therapist in your area who understands this dynamic and can perhaps suggest ways for you to self-manage.

Regards, Red

Luckily for me I am a very mentally strong, stubborn is probably the better word to use, person. When I say I dread the life ahead of me, I mean merely for the pain aspect. There has to be something else that will help. I am trying acupuncture to no avail so far. lyrica is agreeing with me so far, in the sense of mood swings and mental process. It does take the serve chronic sharpness off the pain but it is still mind numbing and stops me in my tracks.
It makes my thought process slightly slower than normal but Ok. I am not yet on the full dose, 400mg now with 4 weeks. I was started on a much lower dose and worked up. I just wondered was there something more. It’s just the pain, it’s always there except for those 2 days.

Thank you for your comments, I greatly appreciate it. Here in Ireland, I can’t just go to my neurologist. I am on the list for an appointment next may tho,lucky me, so I will see my own GP tomorrow and hopefully between us we will come up with an answer.

Yours gratefully ,
Suzi

Suzi, do come back and let us know how you do with your GP. Likewise feel free to use the resources of the site, and to recommend them to your GP. The experience of other patients can be invaluable in helping to deal with facial pain disorders.

Regards, Red

Just a quick update. GP was actually very nice today, probably because someone dropped him coffee while I was in there. Anyway, he listened very intently and decided that I should up my dose of lyrica to 600 mg, slowly, during the day. I am also to start 50 mg of amitriptyline by night to try help with sleeping because I told him I felt I’d cope better during the day with the pain if I was sleeping more than a couple of hours a night.

Feeling hopeful,
Suzi

Hi Suzi,I live this side too in Oxford.I was on 600 mg of pregabalin and it completely zapped my facial pain…that was a good time…however the side effects over time became too much to handle so I had to wean myself off it.But this could be your good medication and you will get your life back…good luck!

I feel the same way, Suzi... I was just recently diagnosed and I'm at a complete loss as to how to handle it. I'm 26 and I feel like my life is over. I'm on nortriptalyne and gabapentin and I have maybe 2-3 pain free days a week. This is utter misery.

The higher dose I am on now Eileen since this morning seems to be doing the trick. I am getting some slight pain through but it’s almost as if I can feel the lyrica bringing it under control within minutes. I hoping the amitriptyline will do the job tonight to help me sleep. I find I fall asleep Ok but am awake with very bad pain within an hour.

I find I almost expected it, I didn’t however expect it this young, or this sever. There is a huge back round of immune problems in my family. I just never heard of trigeminal neuralgia until I was on the floor clutching my face in pain and screaming if anyone tried to touch me, out of nowhere. And now, I will never be able to forget those two words. I’ll carry them with me, like an scar, unseen for ever. It’s very hard to take in.

That sounds quite a high dose of amitriptyline to start on? It can leave you really groggy with a hangover feeling the next morning. I take 20 mg, 30mg if the facial pain gets worse. It's enough to take the worst of the pain away, but the grogginess of the amitriptyline's not too bad. It really helps with sleep too- I was like you and couldn't sleep, now I still wake at times, but doze off straight away which I never could do before. Hope it helps you.

I started on amitriptaline several weeks ago and am getting some relief. It has helped me get some much needed sleep as well. I was depressed and didn't even realize that that's what it was. I have lost both of my parents since May 2014 and I thought maybe I was just grieving! Sumatriptan (prescribed for migraine) seems to help on my worst days when the pain would put me on the floor with an ice pack to my face. I'm awaiting an MRI -- took me 6 weeks to get a date scheduled! I too was on the floor crying and screaming! I thought I was the only one and everyone at work thought I was freaking out because I am at the age of menopause AND I lost my folks ... I'm so relieved to finally have a diagnosis. At least it has a name and there IS treatment ... That's how I look at it.

Hi, I recently got diagnosed with TN. I'm on 3600mgs of neurontin and 60mg of cymbalta. I had a few days once starting the high dose of neurontin of no pain but it has now broken through with no relief. I go back to my neurologist in a week. It seems to be worse if I try to lay down, does this happen to anyone else?

My TN is also worse when lying down. That’s why I qas not sleeping row well just got 9 hours sleep there. It’s like an miracle, the amitriptyline worked!! :slight_smile: I started on 25 mg for two weeks and then move up 50 mg of needed.

Great Suzi re the higher dose pregabalin! I called it my miracle drug when I was on it.I would still be on it now if those mega side effects hadn’t kicked in!
Have a good pain free day!

i’m sorry your going through this! it is the sorest pain. i’ve had TN2 fir over 10 years. was in remission for a while. A life with it!! it was so wonderful! i too am struggling because it came back and is more painful this time around.
I use ice on n face to calm the nerve.
hang in there! keep fighting the fight and pray fir a cure! space and pace you day. I learned slot in pain management As your Dr to see one. it helps with the flares, shocks, and pain