Chronic Migraine Warrior

Chronic Migraine Warrior

Wednesday, February 2, 2011

An Update From Texas

I know I've been away for quite some time. Let's see...

I made it through a HORRENDOUS migraine that lasted a week. I wrote about being in Survival Mode, and that's truly what I was in for what seemed like ages. The pain radiated throughout my entire body... to the point that my migraine pain was a lesser concern. I wanted to rip off my skin, it just hurt so bad. It hurt to move. It hurt to have clothes on, to have a sheet or blanket touch me. I screamed, when my husband took my hand to help me up off of the couch. It was pain like I've never experienced before. My abortive meds didn't help, my neurostimulator didn't seem to help... so I decided that I knew how to live with my migraine pain better than I knew how to live with the intense all-over body pain I was experiencing, so I took some pain meds I had from after my surgery. That didn't really help either, but took enough of the edge off that I could finally get a little sleep. This all started on a Thursday evening, and was at it's worst on a Saturday. I did call my doctor on Monday. He started me on corticosteroids to stop the migraine.

Once the pain lowered some and my brain started working again, I realized how bad things had truly gotten. I should've gone to the ER. My husband and I talked about how we should deal with these kinds of situations in the future because he did ask me multiple times about going to the ER, but my "pain brain" kept telling him "no" (apparently). It's so hard because I'm in pain all the time and then I gradually slide into these horrible migraines, so it's difficult to know when the line has been crossed and I need to go to the hospital. In any case, it finally ended.

I went to my neurologist / headache specialist last week. He's tapering me off of one of my preventives, and tapering me up on my other one. He believes that I have Fibromyalgia, which I've heard from at least 2 of my other doctors. So, no "official" diagnosis, but he's starting me on Lyrica. He also changed my abortive medicine to a narcotic. I'm pretty much out of options to get rid of migraines, once I get them, so I'm hoping that the neurostimulator gets to working.

I had an appointment with my doctor for my neurostimulator a couple days ago. They said that, medically, everything looks great. All of the things that are bugging me (leads in my forehead being visible, connectors sticking out in my back, battery hurting some in my hip, loop in wires making it uncomfortable to wear my glasses, etc...) are all pretty minor things. He said that most of them can be tended to later, if they continue to be a problem (he said it's still pretty soon, and that it sometimes just takes more time for the tissues to get used to having the implant inside). But, he stressed that the major concern he has is that the neurostimulator hasn't had the dramatic impact / decrease in pain that they typically (and hope to) see. I've had the same number of migraine days, but I've been able to do more things overall (like cook, do housework, play games, spend time with family, etc... more). We added back one of the programs that was accidentally deleted (and was one of my favorites), so we'll see how things go now. Still hoping for improvement.

Other than that, my husband and I are just waiting out the ice and snow here in Texas / Oklahoma, so we can head back to our home (he still is without a job, so we're on no real timeline... though we both wish he did have a job). We've enjoyed weather in the 60s and 70s over the first week we were here, but then the temperatures plummeted and the ice and snow came (we only got a couple inches of snow, I think, but it's on top of an inch or so of solid ice). Possibly more snow tomorrow night and Friday. I think it's 16 degrees with a wind chill near 0. I'm used to crazy Texas weather, having been born and raised here. But, I don't remember it ever being quite this cold before. Tulsa got like 14 inches in a day, and it's much colder, so we're sorta stuck here until things melt and clear up. I know there are a lot of areas getting hit with MUCH worse weather. I hope everyone is staying SAFE and WARM.

BLESSINGS!!!
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