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Posted: Sun Oct 24, 2010 6:54 pm
by badnights
I am tempted to call a doc like Earley. I have a lot of his papers already! and books that he has contributed to. But I will give this new guy a bit more of a chance. GG thanks for reminding me that he is not evil and probably does want what's best for me. I have finally been able to compose a fax that's not too lengthy or emotional (they gave me his fax number, not as good as a phone call but something at least.) I said, basically, the sleep study was to find out if I had something besides RLS, but at this point that is not my priority since the RLS is not being managed so if I am not going to get enough time to talk to him about managing the RLS during the sleep study and MSLT, could I please have an appt to discuss the RLS because everthing else is pointless without that. I said it better than that, and hopefully it's calm, clear and concise. I will fax it tomorrow from work.

I've tried clonazepam/Klonopin, brenda; it has a powerful sleep-inducing effect for me but unfortunately that mostly happens the next day; the drug cannot overcome the RLS at night, unless I already have taken something else to help the RLS. I still have leftover clonazepam pills, and I will use them if I get too burned out, but every time I take one I will be able to do nothing for the entire next day.

I like the suggestion of reminding the doc how it feels to have no sleep. I work with a bunch of scientists, so I 've used a similar method to try to get them to understand. I say to them, have you ever tried to read a journal article when you're bone-tired, and you find you've been reading the same sentence over and over and you just cannot grasp its meaning? so you tell yourself, gee I'd better get some sleep then try this again, and you go and get some sleep and when you come back to it, it all makes sense. But for me, I'm not allowed to sleep, and I have to keep trying to understand that paper without sleep, going over and over that sentence til it makes sense, moving on to the next one, forgetting the last one and going back to it, finally getting it all days later, only to do it all over again in 2 weeks when I need the information again, because I've forgotten it.

But how can I have a conversation that long with a busy doctor. This may seem crazy, but I would like to go off my meds and be witnessed by a bunch of doctors. I would like them to KNOW what it's like, to see the effects if not feel them. I think the visuals would be pretty dramatic, and they would walk away with a whole new visceral understanding that would enable them to be more compassionate and proably more effective in their jobs. They could even videotape it and use it as a training video. I would do that, for the impact it would have. It would probably take months off my life!! but I would do it.

Oh another thanks to GG for the suggestion to alternate 9's with 15's. I don't know if I'll go that far - a night with 9 at this point would entail a sacrifice of the whole next day, because I wouldn't sleep and I would have enough RLS the next day to ruin my concentration - but you've made me realize I don't have to go all out on the 15's. Last night I lived with 12. It wasn't fun and I was up a lot and slept lightly and had to sleep in, but I should be able to make it to Nov22 by alternating 12 and 15, then I will still have a bit of my stash left.

I am only scared that I won't get my medication changed on Nov22/23, that he won't change it until the follow-up whenever that will be, which means I would have to last even longer like this. But that's what the fax is for, maybe he'll give me a quicker follow-up or just forget the darn sleep study and deal with the RLS.

GG what med are you on that you take every 4 hrs?

Posted: Sun Oct 24, 2010 9:11 pm
by Neco
I can see it now.

They'll attribute their observations in your behavior to opiate withdrawal :roll:

Posted: Sun Oct 24, 2010 9:35 pm
by sugbrendas
Good comparison Beth,

Now the Klonopin. How much are you on and when do you take it?
Just asking,I began with 1 mg then down to .5 because of the sleepiness and then I started taking it about 2 hours before bedtime. In my case it took about that long to kick in but I wasn't on anything else at the time.
I do have to say the Klonopin is/has been the best for me all of these years.

Slowly over 25+ years I am up to 2- 3 mgs. The scenerio is different now because before the problem was falling asleep ,now I can fall right to sleep but not stay there for long,on a bad night..The pain is new.

So right now my regimen is 100mg Tramadol, 2-3 mgs of Klonopin and 2 tylenol pm's. It has been working alot of nights, i'm getting spoiled.
That and with the stockings,the pain is gone.

Most of the specialists at Hopkins do consult by e-mail or phone if you plan on eventually coming for a appt. my cousin did from Texas, her 9 year old daughter had a neurological problem and could no longer walk or use her hands. It came on quickly and they took her to the Mayo clinic but they couldn't figure it out.

She started contacting the Pediatric Neurologist that is partnered with the famous Ben Carson, and he was very accomadating, even had her room and records waiting. 5 days on immunoglobulin IV and good as new!

That was 15+ years ago and she's fine.

The biggest thing is to find real studies,(with impressive Dr's) highlight them and be the advocate I think you can be. I always bring notes when I'm nervous.


Posted: Mon Oct 25, 2010 3:26 am
by badnights
oh Zach, you're right, darn it. I probably couldn't last long enough to convince them a withdrawal was over.

Brenda I haven't dared the clonazepam for months, I'm afraid it isn't as nice to me as it is to you. I have 0.25 mg pills and they absolutely kill my next day.

Posted: Mon Oct 25, 2010 4:33 am
by ViewsAskew
Like you, Beth, clonazapam was not a good match. It didn't stop the RLS and the whole next day my brain might as well have been in someone else's head for all the good it did me! To make it worse, I only used it for 5 or 6 months, but spent 7 months in hellish withdrawal! Dastardly drug...

I hope the new doc listens. It's gone both ways with me. I've taken the approach of being honest without seeming suicidal, condescending or crazy. I've laid it out, told them I needed a partner to help me. That I can't work this way or function. I usually say something like, "I need your help. I need someone who will work with me because my case appears to be different than most. Will you do that?" They either say yes or no.

Either way, it's terribly stressful. Seeing someone like Earley, Rye, Buchfuhrer, etc. is so nice. You know they get it and you don't have to explain and worry about how you sound.

Posted: Tue Oct 26, 2010 1:26 pm
by dogeyed
Beth, I take every four hours Klonopin, Tylenol-codeine #3, and Lyrica. GG

Posted: Tue Oct 26, 2010 11:23 pm
by fraujoolie

Please let me be the self-appointed ambassador to Dr. B. :) I live in Los Angeles, and could help make your visit pleasant, if you want to come down and consult with him.

I wish you the best!

Posted: Wed Oct 27, 2010 11:21 am
by badnights
GG I could never take Klonopin every 4 hours. It must work magic in you. I'm glad you've found the right combo; basically Lyrica and codeine for the RLS. Have you tried to get straight codeine? that acetominophen is completely unnecessary and not good for you. I mean , it's just bad on principle to take a drug you don't need for a long time, you get that on prescription right? I'd think your doc would know better. Do they think the drugs have less abuse potential with all that acetominophen in them? wierd.

thanks fraujoolie! (is that julie?) I hope I don't have to take you up on that, but I really think, if this guy doesn't work out, I will skip the Cdn in Montreal who I don't think does much clinical work, and go straight to Dr B because at least I know he'll see me and he'll care. And if I hooked up with you while there that would be fantastic!

But the new guy might work out. I got a reply to the fax I sent; his office called with a 1-hour-long! appointment for me for the day after the sleep study and MSLT. I just have to re-book my return flight, and stay alive until then. I can do that. One month. My sacrifical offering to the new doctor. At least I know he's taking it seriously.

I forgot my meds tonight; I was 2.5 hr late with them, so Iit was after 2 when I went to bed. Even tho I had no RLS and the drugs had kicked in full force (I've learned they're not full force til about 4 hr after I take them), I still couldn't fall into a deep sleep. For 2 hours I just dozed. Finally I was really hungry so I got up for an hour. Now it's after 5 and I 'm giving it another shot. I'm so tired the things around me seem to be breathing. Moving slightly slowly in and out. Wow.

Posted: Sat Oct 30, 2010 5:33 pm
by dogeyed
Hey Beth,
To address your comments to me, I only take the Tylenol-codeine #3 for my RLS. I take the Klonopin for Panic Disorder and Lyrica for sharp back pain, both the result of a car wreck I was in years ago. And yes, I have been planning to ask my neuro about too much acetaminophen, since they found I have a fatty liver, they do have opiate-derivatives without it. And the reason codeine or morphine type drugs are often compounded with non-opioid medicines is indeed to discourage drug abuse... your Percocet is Oxycodone and acetaminophen. By the way, I only take a total of 1.5mg Klonopin total all day by splitting up .5mg tablets. So, for you, the side effect of Klonopin's sleepiness the next day could be minimized by breaking down pills and/or taking it earlier than bedtime, perhaps, since Klonopin's effects can last 6 to 12 hrs. I do appreciate your concerns, it helps me form a proper opinion about what I'm doing with my medicines.