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[QUOTE]Originally posted by LOA: [QB] okay, here's an update on me... it's borderline positive, so that'll be a nice change. I've been back at work for... 3 weeks, I think. I've missed 1.5 days in that time, but you know - considering that I missed 10 weeks before that, I consider this to be VERY solid improvement. My average daily head pain has dropped considerably. Instead of a constant pain of 8 or so, like I experienced for so long, I have now settled in to peaking at about a 5 each day, but spending most of the day at about a 3. This is GOOD. I still have some bad days, but overall, HUGE improvement. I attribute the change to a few things. One, the ER treatment broke the cycle of status migranosus. That was key. Two, my preventative, Topamax, is at a dose where it's doing [i]something[/i], so that's good, though history dictates that it will be relatively short lived. I'm on my 4th dosage increase, and I can go 4 more before the side effects are too overwhelming to go on. That gives me roughly another 4-6 weeks, depending on how fast my body adapts. Also, the weather has finally straightened out - barometric changes are a BITCH for my migraine disease. Now that things are finally straightening out, my head isn't feeling the wrath of mother nature as much. Plus, I'm getting the sleeping issues under control. That hasn't been an easy feat, BTW. I completed a sleep study last week. Interesting news came of it. As suspected by my new (and MUCH better!) sleep doctor, I do not have insomnia as a primary sleep condition. This is important, as it explains why all of the treatments for insomnia that I've been given through the years have not helped for long - we were treating an ailment that was not a major concern in my life. Insomniacs not only never sleep, but they are never tired. While I have periods like that, I can directly link those periods to medications or specific events - meaning my periods of true insomnia are secondary and really, quite normal for what is going on at the time. What I actually have been diagnosed with, and they line up perfectly with my daily symptoms, sense now that I know more about the conditions, would be atypical narcolepsy and idiopathic hypersomnia. These diagnoses were not a stretch - any sleep doctor who would have asked me a few questions through the years should have caught the symptoms. I'd just never had a doctor ask me any questions before, and I just took the insomnia diagnosis and patient-blame at face value. My view of narcolepsy has always been the Hollywood rendition - not the way the disease really plays out ;) and I'd never even HEARD of hypersomnia before! But here I am, and if the shoe fits... well, it does. It feels good to know that it's not "just me" and that now, MAYBE, there can be a fix... The narcolepsy diagnosis is called atypical right now because I didn't fall straight into REM sleep during the day, like most patients would, but I'm also on a medication that prohibits REM sleep, so he believes that to be why. Hypersomnia means I have excessive daytime sleepiness for no known reason - even when I get "enough" sleep, I'm still sleepy. To correct this, we're going to wake me up during the day, which should help me to sleep better at night. At least, this is my understanding. I'm still trying to get a full grasp of these two conditions, as the diagnoses are both very new. I'm really excited about the treatment plan though...! It's a completely different way of treating my sleep problems, and I feel really optimistic, because obviously the other things we've tried haven't worked :) I've been prescribed a low dose stimulant (ADHD medication, to be specific) 3 times a day to start with. It's supposed to last about 4 - 6 hours, so I take it at 7, 11, and 3. I crash REALLY hard when it leaves my system, so that should theoretically make me fall asleep better. Plus, the added activity during the day will hopefully help me to stay asleep at night. We shall see. I started the medication today, and already I was late taking a dose of the medication and felt the crash.... it's CRAZY! While I'm on the medication, I don't feel high, or loopy... just awake. More awake than I've felt in MONTHS! Everyone at work noticed and commented today that I just seemed more alert and attentive. Even when I stopped in at Car Toys, the installer noticed that I "seemed like the Old Liz again" - I guess this is a good thing. So that's the update for now. The other good thing about the stimulant that I was put on is that it has shown promise as a migraine preventative - I actually requested to use this one out of the options I was given for that reason - maybe I can kill two birds with one stone? We shall see. In other news, I am having foot surgery on May 23rd to have a "thingy-doo" removed from my ankle - I can't pronounce (or even begin to spell!) what it's called, but it's non-cancerous, so that's good, seeing that my cancer-doctor found it at my cancer check-up. It's only being removed because of the location - my shoes rub on it and cause a lot of irritation. It will cause a problem in the long run, he says. It's better to take it off now, than later. *shrug* He promised I won't need crutches if I do it now, so I agreed. I'm NOT coordinated enough for crutches! Also, we had to take me off of Percocet - I have developed an allergy to oxycodone. It was making me itch so bad that I had to take it with a double dose of benedryl (keep in mind, I'm already on TWO daily allergy meds, ANYWAY!), and even then it got to the point that I was scratching myself raw and breaking out in a rash. So we've gone back to Vicodin. I went off of the Vicodin originally only because of some weird coverage stuff with my insurance at the time. That's not an issue now, and I can get the strength I would need, theoretically, so hopefully hydrocodone is effective. It's been a while, so we'll see. I have no other updates to report. Except that today my head pain was so low that I CRANKED up my stereo. It rocked. I think I'm going to buy a new head unit. One with higher output. And a better EQ. That will be my gift to myself for having fewer headaches and for returning to work. Now I just need to find a stereo that is good enough for my stereo-snob attitude ;) Thanks for tuning in, folks! I'm going to do some homework now.... ta-ta! ~Liz [/QB][/QUOTE]
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