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.



  1. Oh you sound exactly like me not too long ago. I also was put on steroids and seriously contemplating a hospital visit...but I try to avoid that route at all costs. So along with my steroids I started taking a heavy duty opiate for the time being to help me through this "crisis mode". (As I call it). It's like we push through the pain for weeks & months then finally break. And when we's our entire body that's effected.

    Ok...hearing about visible leads and loops in wires freaks me out lady!!! Haha! I might need serious anxiety meds to get me through a stimulator trial! Im SOOOOO scared. But, desperate.

    Do you have to wear a medical alert bracelet and/or have a card? My doc says I'll need them if I go ahead with a permanent stimulator.

  2. Give your stimulator time - mine did not have a dramatic decrease until starting at the three month stage and sorta leveled out at six months, but slowly I have had other benefits. I have mine on 24/7.

    I do have a written list of things to do (if I can remember I have it) and papers to take to ER if I have to go because by then I can't think just like you. So sorry you had such a bad episode.

  3. I'm glad you guys came up with a plan in case this happens again. Are things at a point with your implant that the doctors are saying it isn't successful for treating or preventing migraines - or is it too early to know yet?

    Stay warm and safe!

  4. Jessica, I don't want to scare you. I'm extremely thin and my doctor said it's very rare and that it should get better as my body gets used to the implant and I start putting on weight.

    Winny, thanks for the encouragement. I keep your words in mind, whenever my stimulator doesn't seem to be giving me the results I'm hoping for. I have a binder of papers ready for my husband to grab, in case we have to go to the ER. It comes in handy.

    Migrainista, the implant is not at a "give up" point. My doctor says that it sometimes just takes longer for the body to get used to having the implant inside it, for some people. So, it's still too soon to know yet.

  5. I hate going to the ER because it is usually not effective but I was told that I do not think rationally when I have had a migraine for days on end and that my spouse should make that decision for me.

    I have fibro myself and it was my first diagnosis quite some time before my migraines became chronic. They are comorbid conditions so maybe you do. And since fibro makes you sensative to light, sounds and scents it really adds to migraine triggers and complicates the treatment of the migraines as well. Another issue is the sleep considers with fibro that lead to sleep deprivation which is a huge migraine trigger. my neuro put me on Lyrica as well as a preventative that also might help with the fms. Not a bad med really and it does help with the fibro, just be real careful to taper up the dose because too much can cause some severe muscle pain. it is also one that leads to morning groggiess and to assist with that I break it into three doses with the last one at nine pm so the morning grogginess is not so severe. The migraine fms combo does really suck but I hope the lyrica works for you on both fronts.

  6. (((((Jamie))))
    Here listening dear one...

  7. I'm so sorry to hear this Jamie. I haven't been to the ER for two years, many times for the same reason. My husband says "Don't you think you should go?" and my automatic answer is "no."

    Mostly, it just takes too much energy, and I need every bit of energy I've got just to get from one minute to the next.

    Praying for relief for you...


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