Yes, I know this entry is technically a day late. I'll write another one later today as today's entry but for now I'm going to explain why this entry is a day late.
So, as many of you know, I have Lupus. I also have fibromyalgia and Raynaud's. The Lupus has been under pretty good control, thankfully. The fibro flares up a lot but I'm generally able to deal with that with some NSAIDs, massage, and sheer willpower. The Raynaud's, however, is an entire beast of its own.
A quick background: a couple of years ago I had a headache that lasted over 6 months. One headache. It would explode into migraine-strength (light/sound sensitivity, vomiting, the works) and then fade back down into a headache that I could just try to ignore. But it was always there. I saw two neurologists about it, had a spinal tap done (that resulted in a spinal fluid leak that had me hospitalized to repair - it took two blood patches to get it to the point where it was hardly leaking at all and then over the next few days it ended up sealing itself) tried several medications (none of which worked, some of which made it worse), and just did everything in my power to not want to chop my own head off to be rid of the pain. Ultimately, my rheumatologist and I realized that it was a Raynaud's headache (or, more likely, several Raynaud's headaches that clustered, but just felt like one headache) and, as such, all of the conventional migraine treatments would make them worse. Apparently Raynaud's headaches are extremely rare which is why no one ever thought to "connect-the-dots," so to speak, with mine.
As they were described to me,typical migraines are caused by the blood vessels in the brain expanding and letting too much blood flow through, causing a "pounding feeling." This is why medications that constrict the blood vessels are used for migraines (caffeine being one of the foremost thought of "medications" used for migraines). With my headaches being Raynaud's headaches, vaso-constrictors are actually the worst thing I could take - and likely why the headache got worse instead of better. Raynaud's causes blood vessels to constrict and/or spasm. I have a history of both typical migraines and now Raynaud's headaches so it becomes really difficult to figure out which one is the culprit. I've learned over time how to tell the difference, but sometimes they present so similarly that I honestly can't tell. I have to look at outside factors to try to determine which kind of migraine it is (ie, have I been exposed to cold, could hormones be playing a part, have I been drinking too much caffeine, etc.)
The one thing I found that helped my Raynaud's headaches - temporarily - was for my husband to do a deep vessel massage. It hurt like a son-of-a-bitch but it helped. Basically he would put extremely forceful pressure at the base of my head/neck where the blood vessels are and sometimes massage, sometimes do just pressure. I'm not really sure why it helps, but it does, and in the throes of those nasty headaches, I'll take ANYTHING that helps.
So... why am I posting about this today? Well, last night I got slammed hard-core and out of nowhere with one of my Raynaud's headaches. Sometimes they come on slowly and other times they literally hit out of nowhere. When they hit out of nowhere, I can generally know that it's a Raynaud's headache because with my regular migraines, there are usually warning signs.
I've had a bit of a rough week. Last night I decided I wanted to unwind. I don't drink alcohol all that often but I like to have some every now and then. I've always had a ridiculously high tolerance for alcohol (it took over $150 bar tab to get me feeling "good drunk" once - the only time I can remember actually being drunk). Last night I had two large whiskey sours - or the equivalent of 4 whiskey sours in a bar. I was feeling pretty relaxed and Dan and I decided to watch X-Men Origins: Wolverine while the kids were watching The Wizard of Oz. Right towards the end of the movie *WHAM!!!* that stupid headache hit - and hit hard.
I know that alcohol can cause blood vessel constriction but I've never had it affect me like this before. Maybe it was just because of the volume of alcohol I consumed... I really hope so because I really enjoy the occasional beer and whatnot. Dan did the vessel massage thing and that allowed me to fall asleep. One of the problems with the vessel massage is that sometimes it can leave unsightly bruises - sometimes it just
feels like there are unsightly bruises LOL - and then I get a lot of questions. It also aches in that area for a day or two but at least it's not the nasty migraine-like headache pain.
Today I feel completely wiped out from the headache. I slept like crap thanks to the headache. There's still some residual pain in my head and I'm hoping that some Advil will take care of it. My neck/base of head ache from the pressure of Dan's massage. What a way to start off the weekend, eh?
Add to this the fact that I can no longer sit in denial... I'm in a full-blown Lupus flare. My back has been
en fuego for awhile now and I've been battling some low-grade fevers, too. I've attributed the temperatures to the fact that my body still seems to be beating off the flu that I had over Labor Day but I think that was just the denial talking. This past week the mouth sores decided to make an appearance
en masse and they are so freaking obnoxious. I have one back by my wisdom tooth that I originally thought was
because of my wisdom tooth, but with the appearance of all of the other ones, I'm thinking that's not the case. I've been feeling so. bloody. exhausted, which is another tell-tale sign of a flare that I've been in denial about.
Le freaking sigh. At least I have an appointment with my rheumatologist already set up for next week (Thursday). I've had the appointment since August - it was supposed to be a regular "check-up" appointment and my last with him since he's nearly 2 hours away in traffic - but since I'm obviously flaring, so much for the whole "regular appointment" stand-point. Lame. I've had a couple of people recommend a rheumie down here - I just need to make an appt with her. I wanted to see Dr. Thakor one last time, though, because I adore him - and I love the fact that he trusts me and knows that I generally know what's best for me and he knows that I won't go in to see him for a flare unless I know it's something I just can't cope with on my own. I'm hoping this new lady will at least develop that kind of trust in me (and vice versa).
Ok, this was a long post. Time for me to get out of bed, hop in the shower, and get through this day. I've got a Meet-N-Greet for some NaNoWriMo folks this afternoon that I'm actually really looking forward to. It'll be nice to meet some new peeps and reconnect with some old ones. I can't believe we're already half-way through October already. Yeeps!!