Answer

So Flavia asked, "What Meds are you on now and what alternatives do you use for your headaches."

Its funny you ask that as today will be the first day in a long time I take all my meds. I had stopped them because I was having a bleeding issue and now thats under control.

I take Medrol (a steroid cousin of Prednisone)6mg/day. 12mg of methotrexate weekly (Tuesdays), Protonix 40 mg (for the acid reflux from the steroids), and 1 mg folic acid daily.

When I first started with the neurologist I was taking 6 medications - they basically threw everything they could at me, antiseizure, antidepressants, muscle relaxers, antianxiety, antimigraine. At one point the neurologist looked at me and said she wasn't sure how I was upright as most people who be zombies with all that medication. I've learned to give the meds a chance to work (at least 6-10 weeks) and then work with my docs on adjusting.

Out of all those medications I've kept the antianxiety and muscle relaxers to help with pain at times. They both help me get comfortable to sleep. Also since my lesion is on a nerve sometimes when the nerve is very aggrivated these meds help relax my body to lesson the pain. I also use acupuncture weekly to get rid of the pain as well as nausea from the methotrexate.

I also use peppermint oil (found at any new age store or spa store) and rub a few drops right on my head where it hurts. A cold wash cloth and dark room also help and I routinely will sleep with one tied to my head that also had peppermint oil.

My last resort is a pain pill. Norco seems to work best. But I do this maybe every 3 months when I'm really desperate.

This week has been a little worse pain wise. I notice that my sleep affects my pain and when I’m in more pain I don’t sleep as well. This week was one of those weeks. I’m not sure if its the wacky weather we have had here in Chicago or if it’s the 2 children I now have in my life or my husbands crazy work hours but this week my head hurts. And even though acupuncture helped a lot yesterday and alleviated the pain - around 11 PM last night it came back. Monday it hurt so bad on the opposite side of the lesion (so it must have been a migraine) I took one of my last few prescription pain meds.

I’ve written before about how I’ve avoided obtaining a script from the Neurologist because I prefer to keep my liver as healthy as possible but this week I thought about calling and asking for a refill. But then I’d have to explain my non-compliance with my other medication and I just don’t want to be a bad patient. Because really if I were taking the other medications there is a chance my head wouldn’t hurt. (See the cyclic thinking going on here?) And why haven’t I taken the others? Because I’m not yet ready for the side effects. And I dealt with this pain for nearly 2 years what’s another week? Any anyways it might just be my lack of sleep and my neck hurting which has nothing to do with the neurosarcoid. I think. I’m pretty sure. But really I’m too tired to care today.

And since I feel bad that this is kind of a downer of a post I have lost another pound which is 1 per week at least since the kids have been here. :)


Next week I'd like to do a Question roundtable. So send me your questions that you have for me - about whatever....