death is the answer?

For everything and anything else not covered in the other RLS sections.
SquirmingSusan
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Post by SquirmingSusan »

D4, GHB is a substance found naturally in the brain, so you might not react badly to it. They usually start people at a very low dose and work up to what's effective. So who knows if it might help you.

I'm curious how the Zeo reads your sleep phases, but maybe I should post that up in the Zeo post... Does it show light, deep, and REM? What does a coma-like state look like on the Zeo? Just curious.
Susan

badnights
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Post by badnights »

I am starting hydromorph contin soon. There don't seem to be many RLSers using any variety of hydromorphone. Probably because it doesn't work lol. I am told this is a last ditch effort, the last thing to try. !!! Why did they tell me that? I don't want to know that.

ViewsAskew
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Post by ViewsAskew »

The list of opioids to try is pretty long...so, unless they've had you try:
methadone
oxycodone - regular
oxycodone - sustained release
hydromorphone
levorphanol
morphine
oxymorphone - regular
oxymorphone - extended release
and
fentanyl,

you are not on the last thing to try!

Beside, there is also the option of using multiple medications.

For what it's worth, I've tried several of the above and am finding I do best with a combo. If I take tramadol in the afternoon and early evening, for example, then take a bit of methadone, followed a few hours later by oxycodone, then maybe some tramadol again in the morning, I do pretty well. On a few nights, I've even slept 7-9 hours without having any RLS. I still wake up some, but I'll probably always do that, and it's only 4 or 5 times, not 15-30, like when I have active RLS or PLMs.

I don't have the "perfect" order or grouping yet, but it IS helping. Taking only one of the above hasn't worked for me recently, though it had in the past. While my sleep doc isn't exactly wild about me mixing and matching, he realizes that it may be the only way for me to find something that works for me AND had an acceptable side effect profile.
Ann - Take what you need, leave the rest

Managing Your RLS

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badnights
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Post by badnights »

If I take tramadol in the afternoon and early evening, for example, then take a bit of methadone, followed a few hours later by oxycodone, then maybe some tramadol again in the morning, I do pretty well.
wow. I think they would poop their pants if I proposed something like that. I guess I have to work on them gradually but it takes so frickin long! Meanwhile I now have to try to fill out forms for disability insurance, because I'm still useless and can't tell when/if I will get useful again. I will come back to look at your post time and again over the coming weeks I am sure, just to remind myself that there's lots left to try.

The only doctor licensed to prescribe methadone in the NWT left last June. My neurologist in Edmonton - in a different province - cannot (does not want to? cannot?) prescribe me any narcotics over the phone or by fax; he had to get my family doc to agree to prescribe the hydromorph contin, which she did.

I really would have rathered just get permission to up the daily dose of oxycodone, and combine it with a sleeping pill forever, or something. It kills the RLS for 2-3 hours if I take enough of it, and if I keep popping 2.5 mg when the RLS wakes me up, I can even sleep for a long time. Well, a while. I think I would be ok on 15-20 mg (with a sleeping pill) and that's ok according to the rlshelp website. But I didn't manage to gather my thoughts enough to convey that on the phone to either of them.

SquirmingSusan
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Post by SquirmingSusan »

Beth, here in the US we have to have a paper prescription for the strong opoids, so no phone or fax prescriptions for those.

Hydromorphone contin is a long-acting formulations so who knows, it might be just what you need. I know it seems stupid to change meds when you're already taking something that's working. But as I posted in another thread maybe your neuro is more comfortable with changing to a stronger drug than upping the dose on the oxy. At least he's willing to get out the big guns.

Sometimes doctors don't know that they can prescribe drugs like methadone. It gets confusing when there are special certifications for certain meds like that. Maybe because it's used to treat drug addiction the doctors think that they need special training for that. But it is kind of a scary drug because it can really suppress breathing and it needs to be tapered up very slowly.

Hang in there.
Susan

badnights
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Post by badnights »

Thanks, Susan! I am a little scared but hopeful too. I will post back about it.

Neco
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Post by Neco »

Wow, what I wouldn't give to try Hydromorphone just once...

It's like Hydrocodone... on steroids ! :D

/end drug abuse fantasy..

In any case, if you are getting hydromorphone, and your are responding at least halfway decently to other opiates, then I think there is a good chance it will give you a good amount of relief.

Just watch out for potential side effects such as extreme euphoria. Everyone is a little different, but I can safely say if you have ever received Vicodin (hydrocodone) and ended up really buzzed or feeling really happy, Hydromorphone is going to be even more intense. It's supposedly coveted by hard drug users in a pinch, as the next best thing to Heroin. So it is safe to say it is pretty strong stuff.

It's a really bad trap to fall into, so my advice would be to start out slow. Assuming they are giving you the lowest dose to start with, you may want to even try breaking it in half (unless what they give you is a controlled release form, NEVER break those or you could overdose).

Hopefully it will go OK for you. But if you still have trouble with it wearing off too quickly, you should go to your doctor and say "Hey it works very well, and I'm glad you are not afraid to try opiates, but it just doesn't last long enough to get me through the night/(or whatever period you need). Can you look into controlled release options that might help me better ?"

Neco
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Post by Neco »

http://www.rxmed.com/b.main/b2.pharmace ... ONTIN.html


Read this page.

Specifically the bottom where it lists the description of pills, to see if any match yours. At the very least, when you get it, make sure and ask the pharmacist if it is controlled release or not (if they don't tell you outright - which they SHOULD if they are worth anything).

If so. do not ever break these pills in half.

SquirmingSusan
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Post by SquirmingSusan »

"contin" means it's a controlled release form of the drug
Susan

Neco
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Post by Neco »

Yes, I gathered that much :?

badnights
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Post by badnights »

yes, it will be controlled release. Zach, that's the EXACT page I was looking at yesterday :) . I am getting a 6 and a 3 because the neuro said 10 and there's no such thing. Maybe I should start with only 6 the first night.

I really don't want to get high. I am excited to think it might be the answer. I'm scared too. Geez I was playing broomball yesterday, it's a wierd sport that involves running on ice (ice is meant to be skated on) but I play net so I don't have to run, and I was getting RLS in my arms ! Even though I was in the midst of an activity, the RLS came on because my upper body was still when the play was at the other end of the ice!

Neco
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Post by Neco »

I wasn't suggesting you wanted to get high or anything, but most people who have problems with pharmaceuticals (like me) started out that way as well. It's a major part of why I ended up on Methadone.

You will likely feel something the first few times regardless, unless you are really tolerant, or one of those who just doesn't get that effect from opiates.. In general its just a matter of mentally reinforcing yourself that its not what you're taking the meds for.

If you're getting 3's as well, I would strongly suggest you do start by trying one of those. If its not enough after 3 or 4 hours, then you could take another 3. And if that works then you know the 6's are not overkill and you can go back to your neuro and tell him the problem with the 10's, and that you tried the 3's first, but the 6's are working best.

Or on the flip side, if the 3's work pretty well that will be great.. As you won't be taking more than you need, and you have room to up the dose in the future if you need to.

I also recommend eating something solid with your doses. It will help keep away any potential nausea that some people get from some opiates, and also will help prevent any potential problems like stomach cramps that make you feel like you are going to die. I used to have that problem with Hydrocodone in particular, every once in a while if my stomach was relatively empty I would start to get bad cramps.

My ex summed it up best years ago when she got Tylenol w/codeine for some dental stuff.. She went to the Hospital because she thought she was gonna die, lol.. I had the same reaction the first time I had Tylenol w/Codeine on an empty stomach as well. Although I didn't go to the hospital.

badnights
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Post by badnights »

Z: I've been taking 10-15 oxycodone for a few days now. knowing that, do you still suggest starting with the 3? Or does it not make much difference what I've been on already?

SquirmingSusan
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Post by SquirmingSusan »

Beth, there are sites on the internet where you can convert dosages of one opioid to another, for equivalent painkilling effect. I'm finding that most of them show hydromorphone as being 3-4 times as strong as oxycodone. But then you have to factor in that the continuous release version or hydromorphone is going to probably last at least twice as long as an immediate release oxycodone.

Here's a link to one chart: http://www.acpinternist.org/archives/2008/01/extra/pain_charts.pdf

If both meds were immediate release, it would take 7.5mg of oral hydromorphone to equal 30 mg of oral oxycodone. Since the new med is controlled release, there are 2 doses in each table, on that is released immediately and one that is released something like 4 hours later. (I don't know the specifics on this med.)

So, 7.5 mg of hydromorphone contin would be like taking 2 doses of 15mg oxycodone, 4 hours apart. Of course people all respond differently to meds, which makes things even more confusing. But it sounds like it's going to be a whole lot more effective for you, and for a longer time.

I hope this makes sense. You can always ask a pharmacist about it.
Susan

badnights
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Post by badnights »

susan, in that chart you linked to: IM is immediate release but what is PO?

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