posted
Yeah, we've checked my spinal fluid and pressure. All is well. It's pretty sick to know that I was dissappointed with "normal" results - I was hoping it would be my "answer" - though, on the other hand, increased CSF scares the piss out of me because my best friend has intracranial hypertension (rare in the general population, oddly common in the world of difficult to treat headache sufferers) and she's had a HORRIBLE time... even sicker than I am. As selfish as it is, I don't want to go down that path.
Moving on to you, Jason, please heed my advice - if your hospital is anything like mine, tell them you are a vegetarian upon check-in. You do NOT want to risk the meat. At my hospital, the food can be worse than the ailment. Pretending to be a vegetarian is the only thing that has gotten me through.... *hugs* I'll be thinking of you.
Lee: I'm glad that the triptan is working for you. Triptans are effective in about 80-90% of migraine sufferers, if taken early in the attack. They typically have a low incidence of side effects, too. This is good! I am fascinated (and a bit baffled) by the fact that a pig valve will be used in the operation.... while I think that's amazing and wonderful, it does make me wonder - who thought to try that in the first place, and what person volunteered to be the "guinea pig," if you will? I'm just not that brave.....
I'll post my most recent medical news in another post following this one.
posted
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 something, 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
-------------------- "You are anal twattypoo who has ruined my good mood" PsyLiam to TSN May 01,2006.
Registered: Mar 1999
| IP: Logged
"I am fascinated (and a bit baffled) by the fact that a pig valve will be used in the operation.... while I think that's amazing and wonderful, it does make me wonder - who thought to try that in the first place..."
My understanding is that there's some sort of general similarity between human and porcine anatomy that makes it feasible to implant pig bits in people. I assume, in studying the physiology of pork, someone noticed this and then said "hey, maybe we can use this". Rather than someone asking "what do you suppose we could transplant into people?", and someone else saying "um... what about pigs?".
Registered: Mar 1999
| IP: Logged
posted
For some reason throwing this into the conversation reminds me of Alice Cooper's band discussing the origins of the name Milwaukee in Wayne's World, but I believe one cannibal term for their, er, fare was "long pig."
"I am fascinated (and a bit baffled) by the fact that a pig valve will be used in the operation.... while I think that's amazing and wonderful, it does make me wonder - who thought to try that in the first place..."
My understanding is that there's some sort of general similarity between human and porcine anatomy that makes it feasible to implant pig bits in people. I assume, in studying the physiology of pork, someone noticed this and then said "hey, maybe we can use this". Rather than someone asking "what do you suppose we could transplant into people?", and someone else saying "um... what about pigs?".
Also, we've been using pig valves (even entire hearts) for a while now, since at least the 1980s.
Registered: Jul 2002
| IP: Logged
posted
Liz, glad you're doing so much better (generally speaking). I get that Percocet "itch" if I take too much (like last night!).
Lately (this past week) my pain level's gone up to a 6 when I'm changing the dressing (doc wants to try Acetic Acid again, but after waking last night in CRAZY pain, I'm going back to antibiotic cream base untill I get into the hospital on monday). I is not happy.
Shik, no, they wont allow me to build any models in there- it's hardly an ideal hobby environment, after all.
Lee, I think you're right- the pace of medical science is so fast just now that in a decade, they will probably have something far better ready (and the addition of a pig valve seems less intrusive somehow than a metal part).
-------------------- Justice inclines her scales so that wisdom comes at the price of suffering. -Aeschylus, Agamemnon
Registered: Aug 2002
| IP: Logged
There was much pain and blood (kinda a suprise there)but I'm back home (and working as of this morning) and ready to begin this new Platlet Therapy tomorrow.
Hmmmm....I've heard a few more "You need Dr. House" jokes from nurses and witnessed my (cool) Doctor step on an Infectious Disease specialist like a bug (for telling me "we need to realise that there may be no way to heal this wound and you might have to live with it for the rest of your life"). NOt something you'd ever want to hear in a hospital- particularly as he'd only seen my leg once. If you've never seen a doctor get dressed down (politely), it's an amusing experience. Dr. Negative dids not return to offer more opinions.
Aside from that, I got to experience pain at the 8 or 9 lever for the first time in several years- followed by an injection of Demerol and an orderley to mop up the blood. I handled it much better than last time things were so bad, so that's something.
Hmmmmm....Demerol am good..
Oh, I also read the first five Dresden Files books-really worth reading- much better than the series (and I like the series a lot.
How's everyone else? anyone heard from Jay?
-------------------- Justice inclines her scales so that wisdom comes at the price of suffering. -Aeschylus, Agamemnon
Registered: Aug 2002
| IP: Logged
posted
Haven't read the whole thread, but it aint looking so good around here right now. I hope you all find some relief.
Lee, I know three peoploe who have had valve replacements, and all have done well. If she should decide she wanted to have the surgery done elsewhere, one of the best heart hopitols in the world is in Clevelend Ohio. My brother had a valve replaced, two by-passes and a Liver transplant, all in 8 hours, and you'd never know it to look at him. I have there phone number, and will check here for the next couple of days.
Medications have changed a lot in the last five or six years, no reason for her to have to take warfarin. I've forgotten the names now, but there are a couple of meds for thining blood that are a lot easier then Warfarin, and don't have to be constantly monitored.
Hope the rest of you are doing better.
-------------------- Sparky:: Think! Question Authority, Authoritatively. “Believe nothing of what you hear, and only half of what you see.” EMSparks
Shalamar: To save face, keep lower half shut.
Registered: Jun 1999
| IP: Logged
posted
every day on the green side of the grass is a good dayandsomething to bet hankful for
-------------------- Great is the guilt of an unnecessary war. ~ohn Adams
Once again the Bush Administration is worse than I had imagined, even though I thought I had already taken account of the fact that the Bush administration is invariably worse than I can imagine. ~Brad DeLong
You're just babbling incoherently. ~C. Montgomery Burns
Registered: Mar 1999
| IP: Logged
posted
'Cept I've always heard that the grass is greener on the other side....
-------------------- "You are a terrible human, Ritten." Magnus "Urgh, you are a sick sick person..." Austin Powers A leek too, pretty much a negi.....
Registered: Sep 2000
| IP: Logged
posted
JA: I know somebody who'd been dealing with a massive staph infection in her spine. Burst two vertebra. While she was recuperating, a doctor she'd dealt with in the past (don't remember what for, but it was something completely unrelated to anything in this incident) walked by and decided to pop in. He then proceeded to yank her up to a sitting position by one arm (without warning, natch) and tell her that this was all in her mind and that she should walk it off. And all this was while the massive allergic reactions she'd been having to the first antibiotic cocktails were still wearing off. She was still all swollen and stiff, not to mention the fact that she'd recently had back surgery (to repair the burst discs).
As far as I know, he's still practicing.
On a different note, I have a dermo appointment in a week. I've had one precancerous mole removed each summer for three years now, and I just know I'm going to break tradition this year. (Whether it's for having nothing at all or for having more than one is anyone's guess.)
-------------------- "Don't fight forces; use them." --R. Buckminster Fuller
I had one a few years ago... the scar is horrendous - not as bad as the biopsy results though were though - glad we got that one when we did. I cut out the daily trips to the tanning beds after that....
I just had my yearly appt with the dermo a few weeks ago, and after all of the poking, prodding, and picture taking (including a borderline pornographic one of a mole on my side that I was topless for - my aunt is convinced it's on the net somewhere already...) there were no "problem areas" to be found in the cancer realm. Woot!
I did have a dermafibroma removed from my ankle though because it rubbed on my shoe and bothered me. In retrospect, I should have left it there. I was better off before. After finding out that hard was during "surgery" that it's not just dental anesthetics that I'm immune to (OUCH!) and making life hard for the doc in that respect, the wound is just NOT healing well.... even with careful cleaning and maintenance, it managed to get infected, and it kept splitting open in between the stitches every time I took a step. Ugh. I got the stitches out yesterday (5 of them for an itty bitty little thing - doc sure was thorough! ), after 12 days, and the entire top layer of stitches did nothing - the whole thing just opened up. Thankfully, the bottom layer did what they were supposed to do (that's ANOTHER 5 stitches for a bump smaller than a pencil eraser), so it's not a gaping bloody mess (sorry for the imagery...) but they ended up gluing the skin together and putting some stupid sticky bandage on that's supposed to hold my skin tight for 7-10 days.
It had come off by the time I woke up this morning. I guess 7-10 days is the glass half-full estimation
So now I'm using butterfly bandages on it instead and hoping for the best.
What got me though what when said to the nurse yesterday, all non-chalantly, 'cause I'm not stupid, "This is going to scar pretty badly, huh?" and she says "Oh, no... you'll hardly be able to see it!"
Right. Hello! The wound has been healing for 12 days and it's not healing TOGETHER. It's completely split open AND it's already raised. In the best case scenario, there's going to be a scar. Anyway, it's just my ankle, so I'm not too worried about it. I don't have a foot fetish, and neither does Scott Now that the stitches are out, at least it doesn't hurt - the stitches were a killer 'cause they kept pulling with each step. I'm just more irritated that the nurse didn't say to me "Yep, you're gonna have a scar. Sorry, sweety..." Not big on sugar coating at this point in my life
Here's to a surgery-free appointment for you this time through, HopefulNebula! Keep us updated!!!!
![[Wink]](wink.gif)
and I'd never even HEARD of hypersomnia before! But here I am, and if the shoe fits... well, it does. ![[Smile]](smile.gif)
![[Roll Eyes]](rolleyes.gif)
), after 12 days, and the entire top layer of stitches did nothing - the whole thing just opened up. Thankfully, the bottom layer did what they were supposed to do (that's ANOTHER 5 stitches for a bump smaller than a pencil eraser), so it's not a gaping bloody mess (sorry for the imagery...) but they ended up gluing the skin together and putting some stupid sticky bandage on that's supposed to hold my skin tight for 7-10 days. ![[Razz]](tongue.gif)
Printer-friendly view of this topic