Thank you for accepting me into this group. I hope to learn new ways to deal with Trigeminal neuralgia, and possibly help others going through this.
I was diagnosed a very short time ago, only 2 weeks. I’ve been dealing with the pain for 4 weeks now, so I’m very new to this.
My doctor was able to diagnose this very quickly, started me on carbamazepine which so far is doing absolutely nothing to help with the pain. I’ve been told to up the meds 3 times now, and am on 600mg a day. The limit, according to my doctor, is 800mg a day, and so far no relief. But it’s only been 2 weeks and I’m told that’s early in the game for this medication, that it takes time.
For me the itching is the worst of it right now. At first the pain kept me awake at night, and in constant pain during the day. Now the pain comes and goes, but the itching is constant. It’s always worse as soon as I go to bed. Seems like the simple act of laying down seems to trigger it more so than it does during the day.
My eye itches the worst, and at this point the skin around my eye is completely raw and swollen, and painful even when it’s not itching or in pain due to the TN.
I’ve had very little sleep the last 4 weeks, and last night was no exception. After getting my daughter up and ready for school, my son (who’s 18 and done with school) found an old bottle of Gold Bond medical cream for itching and pain. I thought, what the heck, can’t do more harm, so why not try it. I put it on my forehead, cheek, upper lip, and chin, all the areas that are painful and itchy. I avoided the eye as per the bottles instructions.
It burned like crazy for at least 10 minutes, but once the burning was gone I went to lay down and actually slept for 4 hours pain and itch free. Now I’ve only tried this once, so I’m not completely sure if the Gold Bond was helpful, or if I just had a good 4 hours. But it’s now 10 hours later and I’m still itch free. Really hoping I finally found something that helped, or maybe the meds are finally doing something to help, or I’m just having a good day. Not sure yet.
I’m hoping to talk to other people going through this, and hoping to get helpful tips because sadly my family doctor who diagnosed this, only seems to know the one course of action, the one med, and if that doesn’t work, he’s lost.
He did schedule an appointment for me with a neurologist, and an MRI, but I’m in Canada, and although the health care is free and great doctors are at my disposal, getting in for an MRI or to see a specialist, can take months. So right now I have only my family doctor to rely on, and he seems to have maxed out what he can do for me right now.
Anyway, that’s my story in a nutshell.
So glad to be here.