So, I just had a major TN episode. Brought me to tears, which the squinching of my face from crying made it worse. It’s after midnight and I need to sleep. I am thinking of all you. I am wishing there was more research on this condition. It seems, from some of my research, that most of the meds for TN come with a slue of side effects. I know it could be worse. I just took 900 mg of neurontin at 945 pm. I want to go to ER, but what for?!? I think I may take a Benadryl, so I can sleep. How do you all deal at times when it’s bad?!
I'm so sorry - is it not a big bitch that to cry makes this monster worse!
The day I got TN I went to ER - they gave me benedryl + dillaudid - and it helped for about an hour
Do you have TN 1? Have you tried trileptal?
I have face patches that are prescriptions that I use for breakthru pain --- and some codine I saved back for those more major unbearable times - Lidocane - comes in cream and patches
Most of us do not have any pain when we sleep so maybe your benedryl will help : )
I haven’t tried anything, but neurontin. My GP have me trazodone today and he told me to take it at bedtime because it would make me drowsy. I sleep on my left dude, which I am try to train myself not to sleep on my “bad” side.
I am confused on what type I have- right now it’s just there. A sizzling sensation. Then BAM!! Zap… It’s so painful.
I went to dentists, oral surgeons… The oral surgeon said atypical TN. GP said opposite. I know I just need to find a good neurologist. I’m trying… One say at a time.
Kc Dancer Kc said:
I’m so sorry - is it not a big bitch that to cry makes this monster worse!
The day I got TN I went to ER - they gave me benedryl + dillaudid - and it helped for about an hour
Do you have TN 1? Have you tried trileptal?
I have face patches that are prescriptions that I use for breakthru pain — and some codine I saved back for those more major unbearable times - Lidocane - comes in cream and patches
Most of us do not have any pain when we sleep so maybe your benedryl will help : )
Auto corrects from my iPhone are hilarious. Hope you all can make sense of my post. 
LOL love spell check
Actually if you are not in pain when you sleep -- I'm not --- you should not wake up even if you are laying on that painful side --- I sleep on both sides - face agony is on right side-- sleep has been my friend -- a little too much since I have not been able to work -- I have taken trazadone for sleep, and it also has anti depressant effects if taken regularly
Keep Posting here -peace to you
Hi,
I am up now if you want to email me. I have gone the ER route and they can help.
I hope you find/found that blessed relief of sleep. You sound in a bad way :(
Well, I made it through the night. I woke to my bad side swollen. The only connection I can make with TN and swelling is the nerve aggravates the muscles in the face?!
I will talk to my GP, he is kind but has not a clue with TN. I need to do my research and find a neurologist over the weekend. My GP said he would do his best, but a neurologist would be my best bet. I looked on this website for a doctor and there is only one 2.5 hours away.
The thing about my insurance is well it sucks!! They won’t cover ER visits unless you’re dying. I had to fight with them to pay an ER visit for TN (before I knew I had it) and a ruptured ovarian cyst. Seeing a specialist, like a neurologist is expensive too. I think my insurance companys goal is to make you avoid ER visits and specialists.
I wish I could take NSAIDS for swelling, but I can’t after an endoscope in 2009 when I had my gallbladder removed. I have a very weird reaction to them, but never thought anything of it until my gastro doctor told me not to take them. I’ve tried icing my face… Sometimes it helps, but other times I feel like it makes the jolts worse.
I do believe the neurontin is helping, because my major episodes of TN have gone from every two weeks to over two months. I feel my TN every day, but it becomes intolerable with I have what I call my “flare ups”. At these times I feel nothing can help me.
Thanks for your care and concern. I wish my GP was on call over the weekends, but he is not. Will try to tough it through until Monday!
Hi there, many of us can empathize with you, a lot of us have been down that road. I've been in pain in the middle of the night wondering whether to call someone to look after my kids/wake up the husband if he's there and take myself to the ER ... while wishing I could just pass out from the pain and wake up in the morning.
To those that have gone to the ER, what have they given you that has helped? (being a nurse, it would take a lot for me to go back to hospital!) :P
I sooooooooo feel your pain, god how I wish my family would get it but they don't. How can they possibly know the agony of this crap! I was thinking of having my useless doctor put me on neurontin as i hear it really helps. i'm on the carbo stuff now and it does help but makes me so dizzy sometimes i cant even walk right. He says just keep taking it. I guess i am hoping that just knowing you are so not alone will make you feel better. Hope your spell passes soon