Originally Posted by ChaosGuru
Thanks for responding!
You're right--I have been around the block with meds. Nothing has helped.
The first neuro I saw literally threw up her hands and said she couldn't help me. The second neuro heard about the facial pain and said I had TN, and then pretty much tossed me over to the surgeon.
Here's my dilemma: I have had migraines on the left side of my head for decades. Then I started having what I thought were cluster headaches--an intense burning behind my right eye. Then the facial pain started--I don't need to describe THAT. The problem is that the migraine is now 24/7, the eye pain is becoming more frequent and longer-lasting. It seems that I have a triple thing happening. The neuro who diagnosed the TN only addressed one part of it before shipping me off.
I guess my question is: Does anyone have suggestions for how to approach the docs? I don't seem to be getting heard.
Have any of these docs done an MRI? With all three things going on simultaneously, I think someone needs to take a good look. As for getting heard, with some docs it seems nothing you say gets through to them. Have you asked your GP or PCP for a recommendation? That may be a good place to start if you have a good relationship with that doc. They know the reputations of the neuros around you and can/should be able to guide you. With todays insurance, too many of them try to compartmentalize your treatment and they only want to address one thing at a time which is ridiculous, but thats another discussion. I would also take someone with you that can focus on the docs response to your questions and also speak up on your behalf if they don't answer your question. If your insurance allows and you can afford to do so, going to a clinic like Mayo or some other one would also be a good place to start. They work as a team and get input from other docs within their specialty and are very good at addressing all your problems, from my own experience. If you see a doc who doesn't have experience with a particular condition, ask them if they can refer you to someone who has, or better yet, call their office ahead of time and explain the situation before scheduling an appointment to keep you from wasting your time and hopefully they will be upfront with you in return. This is what occurs to me off the top of my head. I do hope you can find someone who can help you. There are places where patients rate their doctors that you can also search on the internet. This may help you weed out the real bad ones.
Take care and let us know how things are going. ee