Hello everyone. I need a support group.

I have had atypical TN for 10 years now. I was in denial for most of it, thinking that they must be wrong. I’d read the boards here and decided that most everyone here had it so much worse than me that this could not be what I have.

When I got pregnant I stopped taking all my meds. Surprisingly I did quite well during the pregnancy. I hurt some, but nothing too serious. My son is 18 months old now, and the TN has come back. This time I am no longer in denial.

I went to my new family physician and asked to be put back on Lyrica. She gave me a rx for 100mg 3x a day, and Lortab. I have been in so much pain! My ear and cheek seem to hurt 24/7 along with stabbing pains in my lips and cheek. I’ve had a headache almost daily for the last 2 months. The meds are not helping, and I can’t sleep. Every time I fall asleep I roll over onto the left side and then the pain intensifies. My gums are on fire! I feel like if I could pull out my teeth that my gums would calm down. My ear feels like there is an ice pick in it.

My family tries to be sympathetic, but they really have no way of understanding what I’m going through. I hate the wind… I hate the air vents… I hate the pillow… I hate the shower. I am miserable. I feel like everyone wants me to “suck it up” and move on. I can’t…. I am scared of going outside, I’m scared to chew my food, even cold drinks are starting to bother me. It’s hard to live like this.

You are correct that other people really have no way of knowing what you're going through with TN....unless they've been through it. I've had kidney stones twice and shingles once....the pain of TN has been worse than both. Just know that we do understand what you're going through, because we've been there....done that....and many of us are still doing it. I've had it now for about 18 months, but only found out what it was a few weeks ago. I have yet to find a med that works and yes, it gets discouraging, but the alternative of giving up is not the answer either.

One day at a time.

Thanks! I appreciate your reply. Today was a much better day. I increased the Lyrica a few days ago and I think it's beginning to help a little. I just wish it didnt' make me so foggy and druged feeling at the same time, lol.

Thanks again!

Welcome Aleaha, although I'm sad that you have to be here. You'll get support here so you came to the right place. Sadly, I don't have any support groups except for the online ones I've found. The TNA has a listing of support groups that meet in person. Check the stickies at the top of the thread and check out their website to see if there are any near you. I have both classic and atypical TN and I know the pain you're describing too well. For me, its harder to deal with the constant pain than the lightening bolt attacks because those start and stop, whereas the atypical just goes on and on. I've found that nobody really understands the pain unless they have had TN. My gums also feel as though they are on fire, but I've lost a lot of teeth to this condition and the pain didn't go with them. I was undiagnosed for a long time before I finally came across a doctor who suspected TN. Creekman has given you good advice. Hang in there as the side effects should lessen some with continued use. If they don't, then talk to your doctor. Take care

Wow, you sound like me. I have had 3 opinions and have all diagnosed Atypcial TN, and I too have a problem accepting that diagnosis. Fortunately, my episodes are very sporadic and usually occur every 2 - 3 months for a few days at a time, in 8 hr shifts. I have not had the lightning bolts, and so far, the right ear is my only source of pain. Constant hot, deep, boring pain (like one of those antique hand held augers with the door knob type handle) and extremely tender to the touch on the outside of ear and immediate surrounding area accompanied by intermittent ice pick stabs every couple of minutes. To turn my head, talk, chew, or God no to SMILE is out of the question. I don't see many posts here regarding ear pain, and glad (I guess) that there are others with the same type.

My doctors insisted for years that I had an inner ear problem, but finally gave in and went to ENT and they found nothing after 2 MRI to my head. Sent me to neuro and he determined it was ATN. Asked my friend (nurse practitioner) her opinion and she agreed with him. Then I made my self an appointment at Vanderbilt Medical Center here in Nashville and they concluded the same.

As I mentioned before, my attacks are so sporadic that I don't want to take daily meds at this point. I have RX for tegretol to take as needed when I have an episode, really drugs me out and can't say it really helps. A heat pad applied to side of my head is the best pain relief I have found.

Well, hang in there and I hope you can continue to control your pain. Check in here often, there are a lot of compassionate and knowledgeable folks here to listen and advise.

All the best,
Rhonda

Hi everyone! My name is Jamie, I'm from Southern Alberta, and I was diagnosed with TN in May of 2007. (1 month before my wedding.) For about 1 month before I was diagnosed I was getting the most horrific pains I have ever had... (Child Birth? HA!) Electric shocks, numbness, burning, stabbing...etc. You've all been there, I needn't go on. So I got in to see my dentist, and she said that you're teeth are fine, I think you need to see your family doctor, so I didn't... Stubborn as I am, I figured it would go away... Well, one day came when my husband and I were sitting on our front step, I shrieked and started crying, which didn't help at all. He said, that's it, I'm taking you to emergency. We did, and my family doctor was there. (We live in a small rural town.) He took one look at me, knew exactly what it was and put me on meds right away. (I don't remember what they were.) I was pregnant at the time, so he couldn't put me on anything much, and he gave me percocet... Well, the next day I started vomiting blood. (Apparently I can't have percocet.) So I was admitted to the hospital. (2 weeks before my wedding day.) I was in for 5 days, just in time for our daughters 1st birthday. Well, thankfully, our wedding day came and somebody was looking out for me, because my wedding day was pain-free...... Well, that was almost two years ago, and I have been on so many different meds and now I am on 150mg 3 x day of Lyrica. It's not doing all that much, and I thankfully have an appointment with a neurologist in Medicine Hat. The last one I went to didn't think that I have TN and thought that it was a mass on my brain stem. Well, she moved and I never got any tests done or anything. So hopefully this new Neurologist can help more... She didn't think it was TN because I have pain on BOTH sides. And from what I have read, it CAN happen, although rare. Lucky me. One benefit of this new med, I've lost 26 pounds! Half of what I gained on Gabapentin! Anyways, I've tried to condense this so it doesn't wind up being a novel... But I'm really happy that I have found this forum, because there is alot of useful information on here, and intend to show it to my husband as well.... He is wonderful, and the most supportive husband on earth! Although I'm sure you could all say that about yours....