Jess, in response to your question about how did I get the doc to give me pain pills. Well, about a year after I relapsed I was diagnosed with breast cancer. Just the stress from that caused my face to go haywire. It was going to have to wait about a month for my bilateral masectomy. Every day I could feel my face getting worse. One day I called the neurologist office just in despirate pain… I couldn’t stand it one more minute. They completely refused to help. They said their office did not believe in giving narcotics for chronic pain but they did suggest to call my primary care doc which I did. My doc knew everything that I had been going through and was very very sympathic and helpful. He immediately gave me a months worth of hydrocodone ( which I now have swithced to oxycodone). I signed a pain contract with him and have never had a problem getting the prescription refilled. I also talked with my neurosugeon who did my gamma knife surgery that didn’t work. He knew I was in pain and wrote letters to both my neurologist and primary care doctor recommending pain meds. If course the neurologist refused.
When I interviewed my newest neurologist, Dr Krane in Seattle, a huge concen for me was I needed a doctor who would work with me and be willing to give pain meds. Not a problem.
For a few years off and on I was involved in another TN on line support group. I found that a good many people were taking pain meds with success. You just have to be sure that you are not abusing the drugs. If you really have pain it will help and you won’t be addicted. You do need to be careful of the type of meds you get.
I wish I had not waited so long to search for a new doctor. I had tried a couple pain clinics but I was not happy with the level of service… plus I think the doc was getting Alzheimers.
The problem in searching for new docs is that when you are so sick with pain it is such a burden to take the time to find someone that can help.
Some folks use a lot of pain meds in fact some only use pain meds. For me I have found that the right combination of meds, (Lyrica, noritryptiline, bacolfen) take care of 90% of the pain and sensations. Without the meds I am in pain 24/7. Constant unrelentless pain with symptoms changing almost by the seconds. I don’t know how long these meds will help… I hope forever or until I go back into remission. I really puts me a ease knowing that if I have a bad pain day that I can get some escape by using my pain meds.
Jess… good luck. Things will get better. They really really will. I can’t promise it will go away but I do feel that you will be able to get relief.