Just diagnosed - struggling to find support and information
Posted , 11 users are following.
I was just diagnosed with trigeminal neuralgia. My only support system is my husband. I reached out to the Kansas City contact for the Facial Pain Association but their group only meets every other month, next meeting is in January. The contact did recommend one of their books. And, sure enough, it is the highest ranked booked for this condition so I've ordered it on Amazon. ("Striking Back!..."
Then I looked further on Amazon and... where are the books? At least with decent reviews with up-to-date information, etc.?
And I don't just have TN but I also have non-stop pain between the lightening pain. There seems to be so little information, so little support, so little... anything. Or am I just not seeing where the wealth of resources are?
I've looked online, and usually I'm an excellent researcher, but this time I've fallen flat. Any book recommendations beyond the one I ordered? Any online support groups I could join? (Since I'm thinking there aren't more than one in the Kansas City area.) Any, any, any information, medical, emotional, any tips, anything, let me know. I'm open to making new friends, contacts, just trying to get my arms around this condition and not get sucked into this black hole. Fyi - Doctor has me on gabapentin 300 mg 3 times daily. Helps but far from perfect. Pain still there. Worst part is my concentration is going down the drain and my life requires detailed concentration. I would try Lyrica but insurance doesn't cover it for this condition. As I'm on other meds, we are trying to keep me on a med with the least amount of side effects. But at this point I need something where I still can have a life. And I tried Lamictal for migraines for years and I know that would not work for this. The gabapentin is like the nerve whisperer....it's like it's shushing my nerves and calming them. Not perfectly but it helps. And why is the pain worse in the morning (about 30 minutes after waking up) than at night right before bed? It's crazy! And I heard some other people are the same way! Sorry for the long post. I guess I need to start a personal private journal as well. haha
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Sosstaff astrogirlbunny
Posted
I have done this for the last week, am and pm with miraculous results. I think it has calmed this nerve down. I am so afraid of this pain returning, but for now I have peace. I hope this helps.
astrogirlbunny Sosstaff
Posted
Sosstaff,
Like I told the others, I posted this and then had a panic attack and couldn't even read the replies until now. It was like overload. So I am so sorry for not replying until now. Wow, I really hope you have since been diagnosed since last you posted this reply!
I have found that B-12 and a B Complex really help a lot as well. Most likely because the B vitamins are critical for nerves. Do not underestimate how much this will help you with your TN and also with any side effects of meds they might have given you.
They now have me on Lyrica. It helps but isn't perfect. The heat tip is something I need to remember. Thank you! Please let me know how you are doing!