I will try to make this short because it is a long story and hard for me to even type because of my pain. So basically I was diagnosed with type 2 TM and sent on my way because with my insurance we need a referral to see any kind of specialist. We are new to the area and all I have for now is a GP LPN. When I brought her all 7 CT scans 2 MRI lumbar puncture results blood work the test they put electrodes in you face…so basically any test you can have done with notes from a neurologist from a hospital
I was admitted in for 4 days she said I need a specialist right away to start nerve med treatment and other things. Well she gave me a referral but with my insurance it will take week to get one assigned to me and then wait that long for an appointment. So I guess my question is what do I do until then? I have no treatment plan or medications. The pain is something I have never experienced and I have many health issues so I am use to pain. This is terrible and when I get the shocks to my face I see white and hit the floor and vomit the pain is so bad. I can wait that long for help. Any suggestions on what I can do? My regular GP said she has no clue how to treat it and would not prescribe me anything different than what I already have. I do take meds for a back condition and and have for years. 1600 mg gabapentin , 1 mg requip, and I have 5 mg of norco I take 3 x a day. But like I said I have been on those meds for over 4 years they are like maintenance meds so when this started happening nothing I have at home can even touch it. I am in a constant 7-9 on pain scale and when I get a shock it can not be described in a number. Any help would be great thanks
My post said week I meant WEEKS
Hi Sara,
Welcome to the site. if you go to face pain info tab at top of the page you will find info on meds that may help, you can print this out and take along to regular doc. Some people also get relief from lidocaine patches and mouthwashes. As far as I am aware you can get your doc to phone in a script for these, it may be worth a try.
Hope you get some help and relief soon.
Ann.
Hi,
I just wanted to say Hi and welcome to the TN board. I’m so sorry to hear that you have TN, but hopefully you can find answers and support. I have tried some good medications and would be glad to share them with, if you are interested. My one piece of advice is, find a really good doctor as that makes a huge difference.
You may have tried this, but just in case. It's hard for me to think when in pain flare. I use screaming hot moist kitchen towels. I just put it in the microwave for a minute and put it towards my face some times using kitchen tongs. Then the second I can put them and hold them on my face. Be careful! I have had marathon sessions even using multiply towels to keep a hot towel against my face. Hopefully you won't have to hours of that, but it is everything to me when nothing is working. The other thing is ice, just an ice bag or some frozen peas from the freezer. Strange hot helps some and cold helps some. Good luck and hope you get some relief!
Hi Sara. Sorry you have to deal with tn on top of your other problems. Lidocaine creams or patches have already been mentioned and they might help you. Gabapentin is one of the standards for tn although many folks are on a higher dose than you. It helps me at 900 mg daily. You might want to get the book "Striking Back!" by Dr. Kenneth Casey as it is a wealth of easily digestible information on tn.
Getting a good doctor who is working with you is essential. You have found a great resource here...welcome!
This was me 3 years ago
My meds, Tegretol is maxed at 400 mg every 12 hours so they piggy back Lyrica 150 mg every 12 hours. I have MS as well as TN so I am taking Gilenya .5 mg daily for that. I have had 2 surgeries, I have had the Gama Knife and I had a Glycerol Injection. I was in really bad shape when I went in and got the surgeries. I got them both on the same day and they both sucked. But they were totally worth it. I will do it again if needed. Now my meds are keeping the pain almost manageable and I smoke medical which keeps the pain, well I can ignore it. You have to get the right kind. Get a referral to a Neurologist and do a little homework and try to find a doctor that has experience with TN.
I wish you the best,