Trigeminal Neuralgia Support Group
Trigeminal neuralgia, or Tic Douloureux, is a neuropathic disorder of the trigeminal nerve that causes episodes of intense pain in the eyes, lips, nose, scalp, forehead, and jaw. Trigeminal neuralgia is considered by many to be among the most painful of conditions.
hello my name is Nekita and I am a single mother of 3 who also cares for her mother. I was diagnosed with TN 2 years ago and since then I have had MRI which showed nothing and have been on several different drugs like Carbamanzapiene and Baclofen to name a couple. Right now I am on Noritriptilyne and it doesn't seem to be doing much. With winter approaching I am terrified because it seems like cold air is my biggest trigger. My neurologist seems to take a standoffish approach to this illness and just seems like he doesn't care. Every time I go to the ER when the pain is unbearable they just give me that look like they have no idea why I am there because I know there is nothing they can do to help me. What can I do, I see a lot of post about medication combinations that patients are on but it seems like all I get is try this drug for a few months oh it doesn't work then try this other drug. I know I need another neurologist but is there something I can suggest to him. The thought of surgery scares me but this pain scares me more. I would love some suggestions please
This is Mark.
In my experienced, I went to the professional massage therapist. He massaged me at the back and in my shoulders. The pain instantly gone.
I also posted my experienced here.
"Solution to my TN"
Hope thus can help you.
Regards.....
I am a single mother of an 8 year old I was diagnosed with TN officially in 2010. I suffered from this disease since 2005. I finally got in touch with an awesome neurologist in Richmond Va. My MRI showed a blood vessel pressing on my Trigem Nerve. In your case, when they don't see anything on the MRI but you still have the symptoms it my be harder to ask for surgery. I would ask if surgery is still an option. I have tried all the medications and I can't tolerate them. After my Gamma Knife surgery in 2010 I was totally pain free for 3 years. Since then I have flare ups. I am currently having a flare up for the last 4 weeks. I am making an appointment to see my doctor. I have been doing hot compresses and some pain meds that really don't work. I just joined this group today. I hope and pray you get some relief.
I have tried all the meds with bad side affects. I've had MVD surgery after my neurologist suggested I see a neurosurgeon. I strongly suggest seeing one. There are options and you deserve to hear them all The ER can be trying and you need someone with you to help communicate your disease. Make sure you have your neurologist 's phone number for them and all meds. Pain meds only help calm the pain so I can walk out and rest. Also if There is panicking they should treat that as well to calm you down. Many docs and nurses may not be educated of TN. I've had a PA google it. And he also agreed Tordol doesn't always help. My MVD lasted just shy of 1-2 months and I would do it again if my surgeon will ever give the okay. I'm dreading the winter too. I hope I have helped in any sort of way. We've passed the Trigeminal Neuralgia Awareness Day which was October 7th and the color is teal. Pinterest has people with helpful ideas also. You are now on my prayer list Rest and hugs to you