It’s Not All Sunshine and Lollipops

For the first time since the permanent placement of my Neurostimulator implant, I have had an awful several days of intense migraine pain. It started on Wednesday night when I was out walking my dog Wilson in the freezing cold, and I fainted. Thankfully I was just down the block, or I’m not sure how I would have made it home. This was not due to being over medicated, as I hadn’t taken any abortive meds all day. It just happened. I managed to pull myself together and walk home, but the entire time I was off balance, I was experiencing visual disturbances, which I believe was aura (which I don’t typically experience), and my speech was slurred. When I got home I immediately laid down on the couch and my husband grabbed my meds because we both knew IT was coming.

And then it hit me. The intense pain. The nausea. And the symptoms increased; numbness down the right side of my body, being disoriented, and the continued slurring of my speech. What appeared to be a stroke, was actually the symptoms/warning signs of the migraine. Had I not experienced this in the past, we would have gone directly to the ER. But we both knew, and Jason monitored me through the night.

I slept poorly throughout the night, and woke with a migraine, but not as intense. Back in the “old” days, this was a normal occurrence, but since the Neurostimulator, I haven’t woken with a migraine that started the night before. I went to work against my husband’s advice, because I had just come back from vacation and I didn’t want to miss more work. But in the end, I paid the price (yep, he was right, I was wrong). I had to take meds throughout the day to keep the pain manageable, and when I got home from work that night, I was barely able to function, and eventually went to bed. And again, the following morning, I pushed myself and went to work, fighting through the pain. Only this time, mid-morning I couldn’t manage any longer and I told my manager I needed to go home.

The pain was so intense and I was afraid of over-medicating myself with my abortive meds that I knew were not going to help anyway, so I went to the ER. I hadn’t been since February, and I sure didn’t miss it. Sitting in the waiting room for 2+ hours waiting for a bed, the pain of the IV, the smell, it all came back to me. I was an emotional wreck. And I was still feeling “off” from the stroke-like symptoms. I had a fever when the triage nurse took my temp which was likely due to the migraine, another fun side affect. The one shining moment in all of this is that for the first time, I didn’t feel like I was being treated like a drug-seeking psycho for going to the ER. Because I hadn’t been in 10 months, they were actually sympathetic in treating me, especially after I described the symptoms I was experiencing, and in the ER my speech was slurred. The ER physician ordered blood tests to ensure my white blood count wasn’t elevated, and a CT scan to ensure I didn’t show any signs of a stroke, and all checked out normal. After spending 6 hours in the ER, I was finally home, but the fever would not let up! So I dealt with that throughout the night as well. Good times.

My emotions have been all over the place, and I feel like I can’t tolerate this intense pain like I used to. I know it’s because I’m not “conditioned” to I like I used to be, but it has made it very hard to cope, and I’ve really had to keep myself in check with the amount of abortive meds I’m taking because I just want it to STOP. I’ve been extremely emotional and my anxiety has been off the charts. And I’m afraid. What if this is a sign that the stim will not work as it has been? I can’t go back to those dark days, I just CAN’T.

So where IS the Neurostimulator in all of this? It has not blocked the pain with this migraine, and I’m not entirely sure why. I posted a question about this on “The Many Faces of Migraine” private Facebook page that I’m a member of, and several people responded that they too experienced this, and that your body adjusts to the stimulation just as it does with meds, and you likely have to have the device re-programmed by the device rep. So I’ll call the St. Jude med rep on Monday morning and see how it goes. I haven’t had to change the program in my stim since it was implanted, but I did change to the only other program I have in my remote yesterday after receiving the advice from others. I think a combination of being in bed all weekend and the program change have helped to combat this pain. I think.

I lay in bed as I type this, because I am still fighting the pain, but it is manageable today. And I will likely spend yet another day in bed to ensure that I can make it to work tomorrow. This is my number one concern right now, WORK. I simply can’t manage being the “sick girl” at this new company that I started working at in August. I refuse to let that happen. I fear that if I do much of anything, the pain will return and I’m not prepared to deal with that. Cleaning the house, doing laundry, grocery shopping, FUNCTIONING, all of the things I’d like to get done to prepare for the week will go undone, at least by me. And this frustrates me beyond words.

I had to remind myself of the very thing that I wrote in my post about the Neurostimulator: IT’S NOT A CURE, THERE ARE NO CURES FOR MIGRAINE. Argh. WHY NOT?!?! Lack of awareness. Lack of funding for research of EFFECTIVE treatments. Infuriating.