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[QUOTE]Originally posted by LOA: [QB] Okay, I'm overdue for an update, so here we are.... I'm taking the MAOI now. I'm on my third dosage increase at this point, with no real change in the headaches, aside from a few days with pain free HOURS in the last week. That could be a fluke, or it could be an indication that the medication is working, finally. It's absolutely impossible to know at this point. That's the problem with this disease - it's always evolving around me, so minor changes like that can easily be misinterpreted early on. We just have to wait and see what happens. My doctor increased the doseage of the med yesterday just to see if the pain-free time would also increase though. We'll see. Both of us do think it's most likely a fluke, as I've been on the drug for well over a month, and the expected "results" should have kicked in much sooner and been much greater even at the dosage I was on before. The last 3 days I've had no pain-free hours at all. We took me off of the benzodiazapine for sleep as the "mini-panic attack" side effects became a major issue - my body hit a point where it was going through adrenal malfunction one day for 11 hours straight - cold sweats, elevated bloodpressure, couldn't breathe, etc, etc. It was horrid. Unfortunately, there are no other sleep specific medications I can take. None. Nada. They're either ineffective for me, in the benzo family, or going to kill me due to MAOI interactions. So I stopped sleeping after that. Not sleeping began to suck, so we started me on a muscle relaxer at night. It was Zanaflex, which is one of my normal meds in my migraine arsenal. Took it for 3 weeks. 2 weeks in, it stopped working. By week 3, I was done because it was fully ineffective. That's out of my arsenal now for a few months until my tolerance drops again. So yesterday we put me on a new and MUCH more potent muscle relaxer... it's one of the only ones left that I can take with the MAOI (oh, how I hate this drug interaction list...) Didn't work. Not a bit. I was up all night. Literally. I might have dozed off here and there for a total of 2 hours, but that's a generous estimate. I still see 6 of everything in the morning, and we're still not sure why that happens. Also, I've developed this frightening habit of blacking out if I get up and move around in the middle of the night. I'm fine if I'm sitting upright, but about 5-10 second after I start to move around, down I go. It's pretty dangerous and scary. Not sure what's causing that, either. It's only a problem from about 12am - 4:30am. I'm fine before and after that. And I've got this strange new visual aura that plagues me in the afternoon each day now - it's a blue pattern through my entire vision field from approximately 2:00-4:30pm every day. Can't figure it out, either. But I work through it. Other than that, I'm topped out on the MAOI now. I'm topped out on my seizure med, which is still a miracle worker for my phono-phobia and prodrome issues, and I'm not sure what else we can do for sleep. For actute migraine attacks, everything was taken from me but Percocet, which is a miserable situation because I refuse to take it at work. Sometimes it makes me nauseous, and the new nausea meds (yes, my regular ones interfere with my MAOI, too!) fuck me up horribly. They don't put me to sleep, but I don't stay awake. I'm just in loopy fuck-up land. So no meds at work what-so-ever. Plus, I hate taking pain killers, so I rarely take them. Therefore, I just suffer a lot more now. As for upcoming treatment excitement, yesterday at my Neuro appointment, my doctor did a few things. One, he put through a referral to send me to ANOTHER sleep specialist - the last one was a joke and told me that if I just waited long enough, I'd start to sleep again. Moron. Two, he put through a referral to send me to the headache clinic at Swedish Medical Center in the Neuroscience Unit. He wants to have another Neuro look at my chart and see if there are more ideas to be seen. So I will be travelling across the state soon. Joy. Three, he wrote a note for work dictating that under NO circumstances are they to fuck with my schedule and try to make it difficult for me to a) go to the doctor, b) sleep until 6am (when I CAN sleep, that is), c) go to bed at my preferred time. This because my work is trying to change everyone's schedule, and it's chaos for someone like me who has 6 specialists and constant lab work to fit into a month. four) He decided it's time to let me start working out again since I'm off the beta-blockers. I'm a mess, even though I keep loosing weight (11 lbs this month alone!) so he's starting me with water aerobics. Then, if I can build up to it, rehab-based yoga, then eventually normal yoga before I can even try any type of normal exercise routine. It's all the fun I can handle, let me tell you. So that's the update. Seattle, here I come. [/QB][/QUOTE]
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