“Consider this permanent.” My family doctor said this as he washed his hands at the sink. It was like he was washing himself of me. How could someone I’ve been trusting to take care of me since I was a child not be able to come up with a solution?
He turned around and saw the look on my face and quickly said that of course this was a very pessimistic viewpoint, and there’s always a chance it could get better, etc. But, there wasn’t anything else he could think of to try for me.
Somehow, I’ve never thought of this as a permanent condition. I just went in for a tooth extraction! I’m very healthy and only in my mid-20s. Someone should be able to fix it. Someone…maybe if I just went to one more specialist, they’d have a breakthrough moment and find the magical cure. How naïve.
The specialists say there are other things to try. Topical creams, steroid injections, and Botox injections. Maybe even neurosurgery. But my family doctor might be right. None if these are a cure for atypical pain, and neurosurgery might make me worse.
I told myself to give up and just live with this, but still I find myself reading journal articles, orofacial pain textbooks and oral surgery textbooks to try to find an answer. I’m not a quitter. This goes against my nature.
I don’t know what kind of doctor you went to who “washed his hands”. Do you have a definite diagnosis? See a neurologist who is familiar and works with TN. There are MANY meds which may help. If one doesn’t work, try another. Over 35 years, I’ve tried 6 or 8 drugs which didn’t help, but have found enough which did help to keep me fairly comfortable with only intermittent flair ups. I currently take 5 different drugs to control. There are also several surgeries, with varying degrees of invasiveness, which can be tried if medication fails. A good neurologist can walk with you through all of this.
Unfortunately there is no cure. But don’t give up. There are many options in front of you for good pain management. I don’t know where you live, but if you can’t find a doctor who works with TN, go to a large medical center in a place. Like Hoiston, Boston, Pittsburgh, or NY. There are many available. I’m in Houston and see great docs.
Good luck to you and God bless. There is hope and pain relief ahead.
Never quit looking for answers and treatments. I have had this for two and a half years now. It is a process of grieving my former self and somehow learning to accept that hand that I have been dealt. Well, I am not there yet. I seem to be stuck in a place of anger right now. I am angry about my medication that I hate, and my DR that can't help me, and at myself as though I am somehow to blame. I am even angry at my mother for having children even though she had this monster.
I have learnt more from other sufferers then I have ever learnt from the professionals I meet. It is in our own dedication and passion that we spread awareness about this horrific condition.
The one thing that has helped me immensely is talking to other TNers. I made a promise to myself that I would spend time on these forums trying to help others that are just starting down this lonely road. I remember how frightening it was in the beginning and just want to help.
Don't ever give up! Search out your own specialists and keep looking for answers.
Justjane37…what wonderful insight you have. Thanks so much for sharing it. I’ve been fighting depression the past few months, but I never thought about it as grieving for the life before TN. Of course I know there’s the anger. It seems to always be there these days. I’m angry because it seems my life is run by medications. Thank heavens for iPhones. My alarm goes off 10 times during the day and night to take medicine. In addition, now I carry a neurostimulater around in my purse. Don’t misunderstand - I’m glad I have it. It’s just hard to get used to. I’m so tired of fighting. I try to lean on my faith - I don’t know what I’d do without it. But sometimes it fails me too. I hope I’m not griping too much. It feels so good to talk to someone who REALLY understands.
Thank you Jane and Heidi. I’m doing a lot better since I posted this. A specialist prescribed some creams for me to try, and I’m considering giving Botox a go. I’m trying to taper down my oral medication.