Myasthenia Gravis - Climbing the Hill Together

I know, I know........................I haven't posted in AGES!!! *sigh* Things WERE going so well. I mean I DO have MG -- but, I was "at peace" with "the beast". REALLY, I was. My voice was NEVER good -- but, my other symptoms would wax and wane. I was able to get by -- doing things that I "needed" to do -- on days that I was "able" to do them. And able to find things that I enjoyed doing WITHIN the parameters of my "new", limited MG abilities.









BUT, this summer, something happened. I still don't know WHAT!!! Summers have ALWAYS been good for me. It is like I have THREE months of almost "normal" -- and those three months let me endure the other nine months of "abnormal". But, this summer I never "kicked in" to "normal". I never got my strength or endurance "up". Usually, when the weather starts warming up here in the Mid-South, I start walking outside. I gradually increase until I am walking one mile in the morning and one mile in the late afternoon. This thrills my MG guy to NO end. It makes me pretty happy, too! Good for my body AND my psyche! Anyway, this past summer, I just couldn't get into the "groove". My body didn't want to respond. Then, in July, the HEADACHES started.








I took IVIG soon after seeing my current MG guy -- he was trying to get me ready for the thymectomy which I SOOOOO wanted. The first day of IVIG was fine. The infusion nurse said I drank more than any other patient she had ever seen (which was GOOD). The second day of IVIG I continued to hydrate. About 7 PM that night, I got the WORST headache -- none of my migraine meds would even touch it. Took the maximum amount of meds and lay in pain until the next morning. Called the MG guy asking for something stronger -- he said "get thyself to the ER, NOW!!" Turns out I had what was aspeptic meningitis (or something like it). I had been a migraine sufferer until menopause MERCIFULLY swept the vicious headaches away. But, apparently, whatever happened with IVIG "fried" or re-wired my brain. I now have migraines again -- different, and often more painful.









Anyway, since July of this year, I've been having headaches about 20 days each month. A couple of days each month, the headaches are KILLERS -- the kind that make you want to die -- seriously. I recently read a post by a woman who said that natural childbirth was a "breeze" compared to her migraines. I have no experience in this area. But, I can tell you this -- I broke my foot and walked on it for a couple of hours. It wasn't "nice" -- but, it was "easy" compared to a KILLER migraine. I've donated blood with straw-like needles -- easy-cheesy. I had a venous catheter inserted in my neck with a local anesthetic -- NOTHING compared to a migraine. With KILLER migraines I TOTALLY understand why people commit suicide. I'm NOT "there", yet -- but, I "understand".









So, I'm on Topamax (which makes my stomach hurt and gives me diarrhea, makes my hair fall out at the dose my headache guy wants me to take, and makes me STOOPID). I also take Fioricet (up to 6 per day -- which I've taken WAY too often lately). And, I'm taking Maxalt -- which makes me feel like..........................well, it is hard to explain how Maxalt makes me feel. Let me just say that I feel paralyzed and insane and like I can't take a good breath. And when the Maxalt starts working, I SWEAR I feel like I am growing "horns". But, so far, all THREE of these drugs are not getting the job done. I've resorted to adding 1/2 of a Percocet a couple of times. My head stops pounding -- but, at what cost? I'm incapable of a reasonable thought or sentence or even walking a straight line. I'm a mess. What quality of life? Yep, a BIG ole pity party going on here. Do I KNOW that people are worse off that I am -- people with cancer, ALS, strokes, in wheelchairs, etc. -- OF COURSE!! And, I feel guilty for being a whiny-butt. But, my head is HURTING -- and it seems like it is ALL THE TIME. It is just so hard to be focused on others when I am in extreme pain. :(









Anywho, my MG is worse, too. I've had exacerbations -- haven't we all?? Most of my exacerbations were due to illnesses -- the flu, colds, a stomach virus, etc. So, this worsening has not "seemed" like an exacerbation. I'm not SICK. But, I'm having wicked DOUBLE VISION -- so bad that I'm not driving much. I can't close my eyes properly -- washing my hair is sooooo much fun, now (NOT!). I'm choking -- especially when trying to swallow my meds. I found out at a dr. appt. a couple of weeks ago that I cannot lift my legs off of the examining table. I already knew that I was having MUCHO trouble climbing into the back of my truck. ARRRGGGHHH!!!









So, my MG guy says that my migraines are exacerbating my MG AND my MG is exacerbating my migraines. Huh? I'm in some kind of vicious circle -- a dog chasing his tail kind of thing. I'm SOOOOO afraid that I'm gonna have another migraine that I'm stressing myself and THIS is exacerbation my MG. And, apparently, my MG is affecting the muscles in my neck and shoulders (if I understood this correctly) and this is making me have more migraines. Are we having fun, yet?









So, I've got another med to try -- I'm gonna have to be "watched" -- it could potentially cause problems. But, heck, the meds that are SUPPOSED to be problematic are usually FINE with me -- and the ones that are supposed to be SAFE usually put me UNDER the floor. So, I'm not really worried.









Well, I've written a book.....................and am not sure when I'll write again. But, I'm hoping that "letting it all hang out" will be cathartic. Hey, I remembered a word!!! Maybe the Topamax isn't doing as much damage as I thought.









Later.