Okay, it is difficult for me to talk about these things. So bear with me...
First, my neurologist and staff are wonderful and never give up on me, but I have found out now that isn't true for all doctors who are supposed to help people in pain.
Back in May of 2022, my neurologist referred me to a neurosurgeon who works for The Center for the Relief of Pain.
Quick backstory, since my chronic migraines became constant in January 2008, my neurologist and staff have done many things, hospitalizations, specialized clinics, and always look out for what is new coming through the FDA to help me. Problem is that either a treatment or medication doesn't work or stops working because my body gets immune to it. So they work to look for new things that are being researched and approved.
I was on Vyepti, IV treatments 300mg every 3 months, which helped at first to get me back reading, and lowered my general pain level from 6-7/10 to 5/10 but with spikes as usual. However, my body was getting used to the treatments and the help lasted less and less often. This was after a long list of treatments that I had tried.
Anyway, so I was referred to the neurosurgeon for a surgery trial and then if worked, implant to help with pain and lower it. After over a year of jumping through hoops that the neurosurgeon needed me to do, this last August at the beginning, the surgical nurse said that she was ready to schedule my trial surgery but wanted me to see the doctor one more time first. Later in August, I went with my mom and sister to the doctor and he came in and talked to me about my migraine.
Then he said that my migraine was TOO SEVERE and TOO PERSISTENT to do the surgery and that he wouldn't even do the trial to see if it would work. As I sat there crying, and my mom and sister and I begged him to at least do the trial to see if it might work, he said no, and then said that we could use the room to cry in for as long as I needed to because the next patient wasn't going to be there for awhile and he walked out. My Mom got up and said, we aren't staying here, and we left. My neurologist was shocked that a doctor who works at the Center for the Relief of Pain wouldn't help me at all in any way and would treat me like that, after over a year of jumping through hoops.
I am blessed that my neurologist and staff still refuse to give up and have moved me to first Qulipta for a few months, which didn't work at all, and now to Emgality. AND have increased the number of nerve blocks and have referred me to a new pain doctor to try something else. I feel so grateful and blessed to have them. And to have my Migraine Massage Therapist, it only helps reduce pain for an hour, but an hour is better than nothing. I had been blessed to have a wonderful acupuncturist, however, he cannot see me anymore as he is close to retiring. I am going to go back to an ART specialist that I saw before, but stopped for financial reasons, and am really looking forward to see him again.
Also, the other thing difficult to talk about but should help to do so is that last April my brother almost died and we were in fear for about 10 days. He is doing so much better now. But my pain level is off the chart. A huge trigger for me is not just stress, but more so the let-down from stress. I have not been able to get below an average of 8/10 since April, so I had been really counting on the neurosurgeon and when he said no, I am staying at a high level of pain. I could sort of function with a 5-6/10 level of pain after so many years, but this is so bad that I need a break.
Thank you to those doctors who won't give up on me!
