Sorry I haven't checked in the last few days, it's been crazy. I have been in an overwhelming amount of pain since Monday night as I'm sure you gathered from my previous posts. I don't really even know where to begin to get you all caught up. Okay, let me try to think here. Thinking straight is becoming more and more difficult to do. I guess that's a good starting point.
The Topamax is working wonders for my migraine prevention but it's making me a fucking idiot. I can't even form full sentences in my head sometimes. I know I've posted about it before but it really does keep getting worse. Just writing this blog takes a good 30 min of typing, backspacing, retyping, rereading, backspacing again, and starting over. I've never been a good speller but I'm having to ask Chris how to spell the most common words such as juice. Seriously, I forgot how to spell juice the other day. I also forget complete conversations. I'm sure some of it is selective hearing but some of it must be the medication. But it is all totally worth it because before this hellish 5 day migraine I was down to 2 a week which is a HUGE improvement. And I have lost 12 lbs and am fitting into jeans that I haven't worn in months. Gotta love that. I'll look like Rachel Zoe in no time...yeah right!
So there's that, then there's my mom. She's trying to understand what I'm going through, but she just doesn't get it. She sometimes worries so much that she'll say all the wrong things. Like my lifestyle brings on my "headaches". Okay, first off, don't call my migraines a headache. I hate that. A headache is something you can cure with Advil. Secondly stress doesn't trigger a migraine. Third, really, my lifestyle, what lifestyle is that. I don't drink, I don't smoke, I work out 3-5 times a week. My healthy lifestyle brings on migraines I guess is what she means. Sure I never take time for myself but who the hell does? I would love to be able to take leisurely vacations and sit around and enjoy time off but I work full time and have a non-profit roller derby league to run. And we're the #1 roller derby league in Oklahoma City. You don't get that title by sitting on your ass talking about derby now do you? I love what I do and maybe I should take a break but I don't want to, not now, so back off. If you really want to support me just ask me if you can turn the lights down or if today is any better than yesterday. That's how you support a migraineur, not by telling them what they should be doing.
After 3 days of trying to get my neurologist on the phone I finally talked to him on Friday and boy did he get an ear full. I had been to the ER which offered me no relief and I was at my breaking point. Keep in mind I have been having about 5 mental breakdowns a day where I would just start bawling my eyes out with no warning, usually during the middle of work. Yep, while I was with a client. I don't know if my serotonin levels are super low because I'm off the triptans or what but something is going to with my chemical levels and I have been feeling like I am on the verge of a nervous breakdown for about 8 days now. So after he talked me down from the edge so to speak (I was about to say fuck it and take my Frova) he decided it would be a good idea to call me in some Xanax. I have taken it now for 2 days and I have only cried 3 times so it seems to be helping a little. It's a really low dose and I'm even breaking them in half because I hate taking stuff that makes me sleepy. But whatever keeps me sane. I'm not too proud to be on crazy meds.
Now I'm the patient that all doctors hate because I do my own research and I read the latest studies that are out there and I refuse to be uneducated on what is going on with my body. I will not let someone tell me something and not know everything there is to know about it. Well, every since I found out that my doc thinks I'm rebounding I've been reading everything on rebounding. I found out that there is a way that you can get through the rebound process in 3 days but you have to be hospitalized and go through a series of DHE45 injections. I found out about this on one of the forums that I am active on. I'm calling the doc on Monday and begging to do this. It would be so much easier than another 2-6 weeks without triptans. Since I only work 4 days a week anyway I could do it over a weekend and not have to miss any work. Even if I did have to miss work I'm sure my family would help me out if I needed it.
I know this entry has been all over the place and really has had no rhyme or reason to it but that is how my brain is functioning right now so I apologize. Oh, I took the Celiac test so hopefully I find out those results next week. I also got the go ahead to get Toradol(super anti-inflammatory) shots if needed, which I did. I went to a doc in the box today and was so excited to get a shot. It made my head feel great for all of 45 min and then the pain slowly started coming back. But that 45 min was the happiest I've been all week. It made me wanna dance to David Bowie, which I tried to do.
And finally I decided that on the days I can handle it I'm gonna start doing yoga. I went to a class this morning and I'm already sore. Don't ask how I kept up. It was way too advance for me but I tried as best I could. On the way home from the doc in the box we stopped at the Health Food Store (OKC's best grocery store if you haven't been) and I got some new vitamins that are supposed to help with migraines. Here's my new daily regimen...starting tomorrow.
5-HTP-200mg
Magnesium-400-600mg
B2-200-400mg
CoQ10-150mg
Most of these I'm going to up the mg within the first month. I read a ton of studies that used these in preventing migraines. Butterbur and Feverfew were also used but due to my severe ragweed allergy I can't take those:(
Longest. Post. Ever. Whew.
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Girl, My whole family has occasional migraines... except for me. I was blessed as being the only epileptic (seizure free going on 6 years). However, they have them like once in a few years. I don't know how you do it. One of my coworkers called in the other day for a migraine and I couldn't help thinking of you and how you have them daily and still manage to function. I hope they figure out something for you soon. You are definitely on hero level in my book.
ReplyDeleteThanks girl. I guess at some point this just became normal for me and I can't imagine life any other way. Do you take anti-seizure medication?
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