Compazine reactions like ours are rare, but certainly not unheard of, according to my Neuro - I had a less freaky, but still uncomfortable, reaction to Reglan when I was in the hospital once - there I just felt, literally, like I was crawling out of my skin, and my doc told me that Reglan is very similar to Compazine, so that's likely why. I won't take either of them now, no thank you! Phenergan is my nausea med of choice - Vistral if I'm mixing it with Percocet, as the Vistral somehow manages to take away the itchiness from the Perc....
As for the Modafinil (Provigil), you're right, it's not an amphetamine stimulant like my Adderall is, but it's also not a med they typically mix with Adderall. Usually it's one of the other. We talked about trying it instead of the Adderall, but opted against it - Many narcoleptics do VERY well with Provigil and enjoy the lack of related side effects that come with it, however in my case it has one MAJOR side effect that we can't chance - it screws with birth control, which I use to regulate my hormones as another method of migraine prevention. As such, Provigil isn't an ideal option for me....
Topamax, one of my other preventatives, also screws with b/c big time, ans as a result we've had to go to MAJOR extremes changing up my b/c to super potent stuff as a way to try and overcome the Topa. It's a nightmare...
Right now my migraines are doing really well and I haven't had to change the dose of either preventative med in months - this is a miracle of sorts. On the narcolepsy front, we're still trying to fine-tune that process - I'm taking Xyrem at night to help me sleep, and I've had a LOT of health problems come up since I started that - coincidence or related, hard to say - the list of potential side effects with Xyrem is unbelievable, but we're running a ton of bloodwork to find out for sure.
Sleep is a ton better though! I get about 4-5 hours of GOOD sleep a night. That's phenomonal! Also, my headaches are hardly existant, and when they appear, I need 1/2 as much medication to treat them and just a fraction of the recovery time.
So if we could just figure out the stumbling block of how to get my weight under control (I've lost 40 lbs now and can't stop loosing...) and fix my other new issues (which I truly DO believe are Xyrem-related and ultimately will come back to adding simple supplements in my diet to treat them), life would be almost perfect...we'll get there, just gotta be patient. I'm not complaining because I'm still so much better than I was, and the docs are working quickly to figure out what's going on with me to cause the weight loss/other symptoms I'm having so they can rule out secondary causes and properly advise me on what vitamins to take to offset the nutrients Xyrem is stripping from me (it's a MAJOR diuretic, plus it screws with some pretty important chemicals in the brain that relate to food, appetite, and metabolism...) so that I can tailor my diet and my vitamins to the medication and put some meat back on my bones. I can't afford to keep buying clothes because of weight loss - I've bought too many this year, and most of them I've only worn for a few weeks. It's TOO EXPENSIVE!!!!!
posted
Well, heck! Good to hear you're doing so well (and after soooo long too!).
You gotta get that weight loss thing under control, but that's a problem most of the country would kill to have. Hmmmm....could be a good time to start building muscle- some cardio and strength training (provided your doc is cool with it) would give you a better night's sleep too.
Anyhoo, congrats! Are you back working now that you're better?
-------------------- Justice inclines her scales so that wisdom comes at the price of suffering. -Aeschylus, Agamemnon
Registered: Aug 2002
| IP: Logged
posted
I've been back to work since late April - that was WAY before I was doing better, but I was out of short term disability leave, so back I went. We didn't even diagnose the Narcolepsy/Hypersomnia until May, and we didn't get the Adderall dose right until June, so it was a while before we realized how much of an improvement it would make in controlling my headaches.
I'm STILL working obviously, and many would argues that I'm working too much. Tons of OT - I work as much as they offer.
Plus I'm still going to school full time, though I should have graduated in August - I decided one degree wasn't enough when I finished my B.S. in Business Management in August and stayed behind to add a marketing major as well - I'll be done with that degree program in March. I also decided to go straight on to my Masters program after finishing the undergrad stuff, so I've been completing the application and entrance exam requirements for my MBA program which starts in August of 2008. Oy, vey! Lots to do, but once I'm done with it all, it'll be worth it...
Other than that, I'm also doing a few small web design projects as an independent contractor. Nothing big - I'm picky about who I'll work with and what I'll take on due to a) my experience level and b) the amount of free time I (don't!) have, but there are a few small projects that have come my way that I have agreed to do to supplement my income.
So that is my work and school life - I have no free time and I spend pretty much my entire day in front of a computer - mine or my employer's - but that's okay! Since I've been able to work so much, I've been able to pay off debts that I thought I'd be paying on for years, and my financial situation is years ahead of where I thought it would be - which is the only reason I can justify going for the masters degree. I'll be 100% debt free barring any unforeseen circumstances by the time I graduate with the masters degree, so I'll only have to worry about my living expenses (housing, food, insurance, gas, meds, etc. and my student loan payment). I can afford the degree. I never thought I'd be able to put myself in that position as sick as I'd gotten, so this is a blessing...
As for exercise, right now, all of the docs are telling me to shy away from the gym and extra exercise until they figure out the side effects I'm having. My blood work all came back normal to high as far as my levels for electrolytes, protein, magnesium are concerned, yet I have symptoms that are identical to severe magnesium and potassium deficiency. One of those symptoms happens to be SEVERE muscle cramps that come and go throughout the day/night - especially in my legs and feet, but also in my arms and hands. They are horrid and nothing alleviates them... also, there's the concern that, at least initially, if I start to work out, I could increase my weight loss by burning calories that my body needs to keep.
I'd like to get to the gym though and start building muscle soon - I won't be allowed to go straight into cardio or weight lifting even when I do start working out. I've already been told that once I'm allowed to work out outside of the general stuff I do at home, I'll have to start with very low impact stuff like water aerobics, eventually graduating to yoga, and then when the docs are SURE that working out isn't causing migraine recurrence they'll let me have a trainer work out an exercise plan for me.
Exercise is a major migraine trigger for most migraneurs and always has been for me. Ick.
So that's my update for now....
-------------------- "You are anal twattypoo who has ruined my good mood" PsyLiam to TSN May 01,2006.
Registered: Mar 1999
| IP: Logged
Daniel Butler
I'm a Singapore where is my boat
Member # 1689
posted
My doctor's trying me on Adderall for narcolepsy. Can't afford a sleep study to be sure of the diagnosis, though - no insurance. So I know a fraction of what you're feeling...can't imagine the rest. Hang in there.
Registered: Jul 2005
| IP: Logged
posted
My follow-up surgery is on the books for 20 December. I'll be in for five to seven days. Should be a shorter but more painful healing time. I am both very eager and very nervous. But at least this way I have plans for Christmas.
--Jonah
-------------------- "That's what I like about these high school girls, I keep getting older, they stay the same age."
--David "Woody" Wooderson, Dazed and Confused
Registered: Feb 2001
| IP: Logged
Daniel Butler
I'm a Singapore where is my boat
Member # 1689
Short acting or long acting Adderall? I'm taking the short-acting stuff, 20mg 3x a day, but I'm going to ask to switch to the long acting stuff 'cause I keep forgetting to take doses - 3x a day is just too many times a day to trust my memory.
The Adderall does NOTHING for my narcolepsy - I can't even tell a difference when I take it, personally, but it helps my migraines, so you know... The plus side is that I have no side effects from it, with the exception that it makes me forget to eat. I guess that's very common - it'll suppress your hunger. I had to set alarm reminders for meals, and then I was fine. If something tells me to eat, then I CAN eat - I just forget to feel hungry!
Jonah~ Good luck with your operation... we'll be thinking of you!
-------------------- "You are anal twattypoo who has ruined my good mood" PsyLiam to TSN May 01,2006.
Registered: Mar 1999
| IP: Logged
Daniel Butler
I'm a Singapore where is my boat
Member # 1689
posted
Short acting, because without insurance I can't afford the long-acting. He started me out *really* low to work up, only 10mg once a day, and I don't see a difference. But he said he wouldn't bump it up until I stayed on that dose for several weeks to make sure it really wasn't working. (Thanks doc.)
I do feel like I can concentrate a little more for a few hours during the day. That's part of why I struggled so much in university when I was still going - I always feel fuzzy, so I can't study very well. I guess I'll just see what happens and remember that people have it worse than I do - in fact, several concrete cases of people right here. I can't feel too bad for myself in light of that.
Registered: Jul 2005
| IP: Logged
posted
He started you at just 10mg a day? wow.... short acting only lasts 4-6 hours so I'd imagine that it's not doing much for you...
I was up to 10mg 3x a day within a week. 3 weeks after that, we doubled it to 20mg 3x a day.
Though, doctors don't usually "start small" with me... my body tends to metabolize medications like no other.....
Though Charles will likely scoff at this comment, I have no ADHD tendancies and the Adderall hasn't helped me concentrate or anything like that. It DID help to offset the cognitive SE's of the Topamax I'm taking though, I will attest to that! Topamax makes a person as dumb as a box of rocks for the first few weeks after a dose increase, but the addition of Adderall to the Topamax seems to have simply cancelled out that side effect so I'm just... me.
It's a shame that you can't afford a true sleep study, but I can understand why you can't... even after my insurance pay-out (and I'm blessed with REALLY good insurance!) my out of pocket cost was close to $700 for the overnight sleep study and the daytime nap study. I'm finally going to be done paying it off this month, thankfully.... that's a lot of money to be forking out just to have a stranger watch you sleep... but it's nice to have the raw data in front of you when making decisions on how to treat the sleep issues....
Registered: Mar 1999
| IP: Logged
quote:Originally posted by Peregrinus: My follow-up surgery is on the books for 20 December. I'll be in for five to seven days. Should be a shorter but more painful healing time. I am both very eager and very nervous. But at least this way I have plans for Christmas.
--Jonah
Cool....maybe they'll play christmas musak in your room to accelerate your desire to leave. And that crappy "Christmas Story" will be he only thing on T.V.
Or they could stuff you full of tinsel and small toys, so you'd be like a human holiday pinata.
Or you could be just fine and be out for the holiday (with lots o' painkillers to make the season unnaturally bright).
Registered: Aug 2002
| IP: Logged
Daniel Butler
I'm a Singapore where is my boat
Member # 1689
posted
*gets rather amusing image of someone on painkillers singing "Silent Night" in a fine operatic tenor*
Registered: Jul 2005
| IP: Logged
Anyway, just thought I'd start by popping in here (here being the last topic I posted in way way back in June 2006 ) and see how everyone's doing - all better and patched up I hope?
-------------------- If you cant convince them, confuse them.
Registered: Apr 2001
| IP: Logged
![[Smile]](smile.gif)
![[Wink]](wink.gif)
![[Frown]](frown.gif)
![[Eek!]](eek.gif)
) and see how everyone's doing - all better and patched up I hope?
Printer-friendly view of this topic