Wednesday, June 15, 2016

Breaking a migraine cycle

I have had a migraine every day since my last post. It has been hell. It started with a perfume trigger on Tuesday. The migraine started that night and went into Wednesday. Thursday, I got a new migraine. And Friday night, another one. I think the thunderstorms were to blame. Saturday, we attended a wedding. There was festive music and plenty of perfume. So, many more triggers. I had already used a triptan to treat the previous 3 migraines, so I wasn't allowed any more. (Puts you at risk for medication overuse headache- which is really just endless intractable migraines.) I tried Toradol, Flexeril, and Benadryl. But the pain was severe, and has persisted.

Monday, the doctor called in a steroid pack for me. The steroids have made my POTS go nuts, as well as interfered with my sleep. My blood pressure, heart rate, and body temperature have been all over the place. The steroids cause severe anxiety. Thank goodness, the pain is easing up, but not gone yet. I'll be on it for a total of 6 days, tapering off gradually.

I also can't exercise during any stage of a migraine. So, I haven't exercised in over a week. And that makes my POTS so much worse. I can exercise with significant joint and muscle pain. I can exercise with high or low blood pressure. I even ride the bike when I am barely conscious some nights. Because I know I'll feel better the next day. But, I can't exercise with a migraine.

You would think I would be used to severe pain, but somehow, it's always worse than I remembered it. Or maybe the pain really does get a little worse each time.

Next time the pain is this unmanageable, I think I'll go into the hospital for an infusion of medicine to abort the pain. Because this drawn out process has been really difficult. I'm still so grateful I had something to help with the pain.

But I am left with even more crippling anxiety about my migraine triggers. I'm terrified to be around people or go anywhere that may be scented (which is anywhere). I don't want to commit to attend anything, or invite anyone into my home (i.e. my safe space). I don't even want to cook in my home, as the tiniest bit of smoke can trigger another migraine.

The stupid thing about chronic migraines is that the more migraines you have, the more susceptible you are to triggering another migraine. Especially in the time immediately after the acute pain phase (the first 24-48 after the pain dulls). That is when you are extremely vulnerable to triggering a new migraine. And for me, the acute pain phase is always at least 48 hours if the migraine isn't treated. Just because I get away from the trigger, doesn't mean the pain will start to go away. The pain will actually steadily increase for hours. And I can NEVER sleep off a migraine. It has to be treated. But you can only safely treat 9 migraines per month with abortive treatment. I have had to push this to 12 lately. But anymore than that, and you will get stuck in a rebound cycle of endless pain.

Luckily, I happen to have an appointment with my migraine specialist tomorrow. It was supposed to be the day for my fourth Botox treatment, but instead, we'll be reevaluating my preventive treatment. In my mind, I'm ready to go back on Topamax. It is an anti-seizure medication that is nicknamed Dope-amax for its tendency to cause major brain fog. If you know me at all, you know I suffer from major brain fog on a regular basis. I spend a lot of time staring, unable to think clearly. But, when I took this medication several years ago, it significantly reduced my migraines. And my current state leaves me desperate enough to try it again.

We'll see if the doctor agrees with this idea, or if she has any other ideas.

For now, I am relieved the pain is reduced to a moderate level, and is no longer severe. But I can't say the migraine is gone. I'm in the postdrome stage. I still have light sensitivity and a lingering achy tension in my head. I'm also terrified to go anywhere, see anyone, or make any plans in this state. And the steroids are only exacerbating these fears.

In addition to all of this, my girl, Wilma has been sick. And I haven't been well enough to get her to the vet. At least we're keeping each other company.

I'll update as soon as I can after tomorrow's appointment.