Hi. I was newly diagnosed on September 25th so this is quite a big change for me.
I woke up on July 14 to find my left cheek to be somewhat numb. Scared thinking I was having a stroke I had my husband take me to the ER. They did a CT scan and all the other required tests and found nothing. Sent me on my way and said see my PCP in two days. Saw him that Friday and he suspected TN but I wasn't having any pain yet so told me to call him if I was. In the mean time my final results of my CT Scan came back showing something abnormal so he ordered an MRI. Still having no pain I had the MRI which came back showing some lesions and now he was concerned there was a possibility of other issues and referred me to a Neuro. This was still mid July and they couldn't get me in until end of Sept. Sometime at the end of August it all changed. Shooting stabbing pain coming from everywhere in my ear, down my cheek into my jaw...lasting days. If my hair touched my cheek..holy crap. Burning like a fever from hell. Called my PCP begging for help...gave me Tramadol to tide me over. Helped me to take my mind off it, but no relief. This was happening (is happening) 3 days a week. Finally saw Neuro on Sept 25, looked at MRI, ruled out MS...yep..TN..though didn't state what type. Started me on Gabapentin. SLOWLY. 100mgs 3x a day a week to 200mg this week and 300mg next week...need to call him next week to update. Had a flare started on Monday night lasted until Thursday BAD one this time. My left cheek is always feeling numb inbetween flares and I know when one is coming because the top of my cheek right below my eye starts to get like a sore feeling and then the burn starts. Pain comes usually withing 12 hours. Feeling better today.
I am 45yrs old I am bipolar on top of all this but very much under control with Lamictal and Topamax and haven't had any issues with this illness in over 10yrs. I have been on Lithium but my kidneys don't like it too much (have begun to have Stage 3 kidney disease) so we have weaned me down to where I am almost off of it after 14 years.
I'm glad I found this group.
Thank you for taking the time to read this if you got this far...;)
Warm Welcome Princessmoo, funny, I call my mom Moo.
I’m sorry to hear of your recent diagnosis of TN, but I’m really glad you found us. LwTN has been a wonderful support to me over the years and I’ve made long lasting friendships as a result. I hope you’ll feel the same.
Sounds like you have an educated doctor who knows a little something about TN, that’s a huge bonus.
Finding therapeutic relief is a process in patience and a dance with the med(s) . Initially you’ll experience more fatigue and perhaps other side effects, but usually as your body adjusts the side effects tend to minimize and sometimes go away all together. My best advice right now is to try not to give up on a med too soon ( unless you’re having a severe allergic reaction) the anti convulsants take time.
I hope you’re able to find relief soon and go back to life as usual in no time. It is possible.
Wishing you the best, and look forwad to gearing how you’re doing!
Mimi
thanks Mimi, funny my favorite Aunt was nicknamed Mimi...Moo is my rescue puppy.. increase to 200mg 2x started yesterday and it's kicking my butt fatigue wise but I'm pushing through.
Hi moo, good luck with the medications. I have tried everyone under the sun no relief. For the last 6 years. My pain is constant in the right ear, face and neck. My pain has never gone away, just chronic 24 hours a day. I was recently diagnosed with Geniculate neuralgia. Saw three neurologist and two neurosurgeons. After 6 years I am finally getting answers!! Good luck and hang in there.
welcome to the community PrincessMoo; i am so glad you have found us. thank you for sharing your experiences with us. it takes courage to make yourself vulnerable.
please make yourself at home here. i would encourage you to read the book Striking Back. it talks about the symptoms, medications used and their side effects, surgical options and shares a few personal stories of tn. i have taken the book with me to appts so i can understand the medications and dosages being discussed. my husband ordered it off of Amazon.
i wish you peace on this journey and pray you will have many pain free days ahead.
