Thankfully God must have been thinking the same thing. I met with an awesome pain management/neurologist last week at the Cleveland Clinic. I will say right off I was very nervous about this appointment. I worried he would not hear me or worse not help. Before going in I just prayed that I would hear him and he would hear me. It was one of the best, informative appointments I have had. No we did not see eye to eye on everything, but we both took the time to listen.
I am not going to go into great detail but wanted to give the basics. He feels like I am having several different kinds of headaches. I agree. He thinks I am having some nerve related headaches in the back of my head into my ear. These are related to my surgery. He feels like I am probably having some chiari related headaches. And he feels I am also having migraines. I was not sure about this. I have had migraines in past but they have never felt the way my current unidentified headaches feel. He explained that a person can have various types of migraines over their lifetime. He also felt like I may be having headaches due to the pain meds I am on. This also makes sense since I do not tolerate pain meds well at all. He would like to focus on the migraine type headaches, and pain med related headaches first. The Chiari and Nerve headaches will be slightly more complicated. He also felt the moldy environment is contributing to my overall poor health.
The first thing he wanted to deal with was my pain due to my EDS. I take the pain meds to help with the extreme ouch in all my joints. He recommended a med that will help inflammation and will help me get off pain meds. He gave me a schedule to help me to safely come off pain meds. He also prescribed a steroid to help with the headaches as I come off them. The next step was to try a migraine med on the headaches that might be migraines. He also wanted me to start magnesium as this can naturally help migraines. Other things he recommended- physical therapy, massotherapy, and water therapy. I need to get some weight off so my joints can be healthier. What I loved the most is he said his hope would be that I could eventually manage my health through PT, exercise, and eating right! My kind of doc!! I would love to kick the meds to the curb!
We talked about other ideas for the nerve and chiari headaches. He really believes though getting these other things under control will only help those issues...plus he wants to focus on certain things. I could not agree more. He strongly encouraged I wait for any kind of surgery until we get my pain under control. Again totally agree!
The drive home I chatted with my mom and felt right away I needed to postpone the trip to Maryland. I have felt on edge about it for awhile now. The doc in Maryland will be there in 6 or 8 months if I still am struggling. I want to do this right! I want to have the possibility of no new surgeries. And I am happy to report some awesome news! The med for my EDS pain is A-Mazing!! I have literally no pain in my joints! None...not even when I get up in morning! Plus much of the clicking and subluxations I was having are settling down. I do still have bad neck pain and some lower back pain, but seriously....I am thrilled not to feel like I have a 90 year old body! I have had a few headaches. One went right away with migraine med. The other 2 have not. But I am confident with time we will get the headaches under control. Another cool part is I have had NO pain meds since Friday night! WOW! No not everything is fixed, and I will need more time to figure this all out. This, this healing is why we stay home tomorrow....to move forward and not look back!