I was first diagnosed with TN about 8 years ago and was put on the standard drugs for a year. After that, I was in remission for 6 years and stayed away from the doctors, although wind and cold still caused some minor symptoms. Now I’m really flared up and have set up my first neurologist appointment. Any suggestions on questions I can ask? Tumor and MS have already been ruled out through an MRI
Hi, I hate to say it but MRI doesn't always show where the problem is at. The first thing I asked my Neuro. :Do you know what TN is? If he said "I've heard of it" I'm out of there. I don't want to even talk to a Doctor that has to look up what I'm talking about. I also asked: What kind of meds do you suggest I should take? What are the options I have to taking these things? What are the side effects of this stuff? What am I going to feel like taking it? AND How many cases have you, you your self taken care of? Hope I've been of some help, Let me know how you are doing. Best to you and of course I feel so sorry you have this junk. Bye!
I agree with the above poster. You don't just need a neurologist--you need one that understands and REALLY wants to help you. In my experience there is so much trial and error with medications that you need someone that is on board 100%.
It took me a year and a half to find my neurologist. I saw a neurosurgeon and he referred me to a neuro that he works with. My neuro has studied facial pain throughout his whole career and is so knowledgeable and understanding of the invisible beast. The first time I met him I cried because he was the first professional that seemed to know more then me.
Also eight years is a long time. I would ask for another MRI/MRA or a Fiesta MRI if you can. Things can change over time. And yes it is not a reliable tool for diagnosis but to rule those other things out.
I first had ATN when I was 29. I had it for a year and then I had a seven year remission. It came back much worse two years ago and hasn't stopped morphing and spreading since then. Unfortunately, it does seem to be progressive for most of us. Medication that kept me pain free a year and a half ago is doing nothing now.
Thanks so much! Good information. I didn’t know about the Fiesta mri. I’m going to the Mayfield clinic in Cincinnati and I’m confident they have experience with TN
Yay! I think I have finally found a neurological group with doctors who understand. The first words from the doctor were," I can't fix you today or overnight but TN is terrible, disabling disease and I promise you won't have to live with the torment of it the rest of your life". I'm waiting to get the MRI, but he suspects atypical TN, atypical facial pain and facial spasms. I went to Dr. Walter McFarland from Airing neurologist. Affiliated with the Mayfield Clinic at UC hospital in Cincinnati.
That is awesome! It means so much to be in good hands...I hope they can help you with your pain :)
Peony said:
Yay! I think I have finally found a neurological group with doctors who understand. The first words from the doctor were," I can't fix you today or overnight but TN is terrible, disabling disease and I promise you won't have to live with the torment of it the rest of your life". I'm waiting to get the MRI, but he suspects atypical TN, atypical facial pain and facial spasms. I went to Dr. Walter McFarland from Airing neurologist. Affiliated with the Mayfield Clinic at UC hospital in Cincinnati.
I live in Cincinnati too. I went to River Hills Neuroscience. Best of luck I have been dealing with this about 3 months non stop pain and the medications are not working. I was diagnosed with ATN nothing was seen on my MRI either or sinus CT scan.
Peony said:
Thanks so much! Good information. I didn't know about the Fiesta mri. I'm going to the Mayfield clinic in Cincinnati and I'm confident they have experience with TN
Hi! Frequent or heavy handed dental work or exposure to pesticides can be a cause-I hope things get better soon-Homeopathy has helped me the severe nerve pain.
Erin I did comerical pest control …what can cause what I did not catch it