A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

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ViewsAskew
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by ViewsAskew »

I know I couldn't work full time, 9-5. Even with meds that works most of the time, there are 10-20 percent of the days that are NOT OK.

It definitely sounds as if you are having a reaction to the methadone. That doesn't mean other opioids won't work, though. No all opioids work the same. You may have luck with a different one. Your options include fentanyl, levorphenol, oxycodone, oxycodone sustained release, oxymorphone, and oxymorphone extended release in the US. I don't know how different these are - just that they are. Well, I just looked it up...this is form a pharmacy webstie:

There are three different chemical classes of opioids. They are as follows:
• Phenanthrenes--codeine, hydromorphone, levorphanol, morphine, oxycodone, hydrocodone, and pentazocine.
• Phenylpiperidine--meperidine and fentanyl.
• Phenylheptane--methadone and propoxyphene.

Often, a patient who is allergic to an opioid from one class (e.g., morphine, a phenanthrene) may be treated with an agent from another class (e.g., methadone, a phenylheptane) without cross-sensitivity. Even though the risk of cross-sensitivity is extremely low, patients who exhibit a true allergic reaction to one of the opioid analgesics should be monitored carefully if an agent from another class is substituted. For example, IgE antibodies isolated from a patient allergic to morphine were able to bind to fentanyl. Morphine antibodies have also shown some reactivity with methadone and meperidine.

Diagnosis of Opioid Allergy - See more at: http://www.uspharmacist.com/content/d/h ... HNLUo.dpuf

It's NOT over yet!
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

EeFall
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by EeFall »

ViewsAskew wrote:I know I couldn't work full time, 9-5. Even with meds that works most of the time, there are 10-20 percent of the days that are NOT OK.

It definitely sounds as if you are having a reaction to the methadone. That doesn't mean other opioids won't work, though. No all opioids work the same. You may have luck with a different one. Your options include fentanyl, levorphenol, oxycodone, oxycodone sustained release, oxymorphone, and oxymorphone extended release in the US. I don't know how different these are - just that they are. Well, I just looked it up...this is form a pharmacy webstie:

There are three different chemical classes of opioids. They are as follows:
• Phenanthrenes--codeine, hydromorphone, levorphanol, morphine, oxycodone, hydrocodone, and pentazocine.
• Phenylpiperidine--meperidine and fentanyl.
• Phenylheptane--methadone and propoxyphene.

Often, a patient who is allergic to an opioid from one class (e.g., morphine, a phenanthrene) may be treated with an agent from another class (e.g., methadone, a phenylheptane) without cross-sensitivity. Even though the risk of cross-sensitivity is extremely low, patients who exhibit a true allergic reaction to one of the opioid analgesics should be monitored carefully if an agent from another class is substituted. For example, IgE antibodies isolated from a patient allergic to morphine were able to bind to fentanyl. Morphine antibodies have also shown some reactivity with methadone and meperidine.

Diagnosis of Opioid Allergy - See more at: http://www.uspharmacist.com/content/d/h ... HNLUo.dpuf

It's NOT over yet!


Thanks ViewsAskew! I don't know, maybe I will get used to the methadone, if not I will ask the doctor about this. I did sleep last night after taking 2.5mg in morning and at lunch and 10mg in the evening, so 15mg or 3 tabs total for the day. I slept for 5 hours in bed plus an hour or two on the couch as I fell asleep there. Also during that day I napped a bit which never happens with me but was a nice gift. I am hopeful that it will work tonight also, in fact I should be going to bed now but I am enjoying existence at the moment :roll: :think:

There is no question that I am still on the rollercoaster ride at the moment but I slept 11 days in a row, then none, then some, then none, and then last night I slept again. So if my math is correct that is 13 days of sleep and 2 days without in 15 days which is actually really good for me, especially when one considers I am taking one medicine for WED and it has been years and years since that has happened.

I am just charred well done bacon on an open fire and any loss of sleep makes me think I have finally gone up in flames. I have waited for the end so long I half expect it now. I have to try to remember that this time it just might work. I had a good day, even taking 15mg of methadone which I thought would make me too groggy, but it didn't. It might build up more in a few days, but hopefully it won't.

I purchased the extended version on blu-ray of The Lord of the Rings Trilogy a week or so ago and I have watched all the movies again plus 6 of the 9 extra DVD material that came with them. I wouldn't have been able to do that a month ago, or 6 months ago, or a year or two ago, I just would not have enjoyed it very much with all the meds I was on and the little sleep. I have been making plans for doing some neat projects. Sort of like moving back into a house that has been boarded up. Taking off the dust covered sheets from the furniture and putting away things, moving back in. I hope it continues but I am so easily aware that I could be called out of town again at any moment. I have to put my clothes away and stop living in my suitcase.

ViewsAskew
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by ViewsAskew »

I've found that my tolerance for the downs is MUCH less than it used to be. Like most of us here, I existed for years without much of a complaint. As with many of us, I spent long periods with little or no sleep. And, while it wasn't fun, I got through it.

Maybe it's after we turn a corner and we realize that there is a chance for it to be different, that it doesn't have to be this way. Maybe we just have had enough. That may be when I threw myself into finding a solution and became very selfish about my sleep. I'd try just about any combination if it held hope for consistent returns, and I'd hurt anyone who got in my way! Whatever it is, my tolerance for it to be like it used to be is completely gone.
Ann - Take what you need, leave the rest

Managing Your RLS

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EeFall
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by EeFall »

Very little sleep last night, not enough to feel confident to drive to work this morning :( this stuff is driving me :crazy: I feel like such a :yawn: er.

EeFall
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by EeFall »

ViewsAskew wrote:EeFall, I find there are many substances other than sleeping pills that can make someone sleepy. Ambien doesn't do a thing for me, either. Since methadone makes me want to accomplish things and get things done, it's very difficult to fall asleep when taking it. But, a small dose of any of the gabapentin drugs knock me out completely - I just haven't figured out how not to be excessively sleep the following day. I'm not saying they will work for you - and maybe you want to avoid them or you can't take them. Just thinking that maybe there is something out there that will work similarly for you.


ViewsAskew!!!

Thank you so much for mentioning gabapentin. I mentioned it to Dr E and he thought it would be a great idea to try gabapentin for me. Years ago I took it but don't think it was doing much but that was after I augmented the first time. Now that I have completely detoxed off the pramipexole I thought it was probably a good idea too. He sent a prescription to my pharmacy for it, to take up to 6 a day but he said to try one at night when I take the methadone dose and then increase it (if needed) every other day until I had gone up to 6 capsules.

Guess what? It knocked me on my gluteus maximus last night in the middle of writing a note at about 10:30pm, woke up on the couch at midnight and went to bed until the alarm went off at 5:30am! I haven't slept that hard in a long time. It worked so much like a sleeping pill should, but they don't for me. Fantastic! I am hopeful for tonight. Last night I had to do something so didn't get done with it until about 10:20 pm and went and sat down on couch and I was out! I also slept like a rock in bed.

I hope to get to bed about 9:30 pm tonight and have the alarm set for 4:30am for work. 7 hours sleep would be fantastic, the 5 1/2 in bed last night was actually very nice. I can't really add the 1 1/2 hours on the couch though because with the VPAP I don't usually have very restful sleep.

Thanks for the advice. You should pat yourself on the back (I'd pat you on the back if my arm stretched from halfway across the country lol). :clap: :wave: :think: :-D

ViewsAskew
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by ViewsAskew »

That is GREAT news! I imagine, given what we've learned about glutamate, that once the methadone takes care of the movements, the GABA in this takes care of the wide-awakeness.

Now for the bad news....

It may not always work this way. I get used to it over time and have to use more. But, if I don't take it daily, it does work like this all the time and I don't have to increase the dose. So, I like to take it 4 or 5 days a week, when I do.

And, pat on the back accepted :-).
Ann - Take what you need, leave the rest

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rthom
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by rthom »

:thumbup: :clap:

EeFall
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by EeFall »

It worked last night too! :clap: Gabadone Rocks! I will try one a night for awhile and see how it works. Maybe I will end up taking a break with it on weekends when I don't absolutely need to sleep...

Polar Bear
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by Polar Bear »

Eefall & Ann -
this is very interesting to me. What dose gabapentin do you use when taking it as a sleep aid. Do you literally just take it in the evening like a sleeping pill. It would be wonderful if at last something would help me sleep. Even if my GP would just prescribe me a few so I could try it out.
Betty
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ViewsAskew
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by ViewsAskew »

Polar Bear wrote:Eefall & Ann -
this is very interesting to me. What dose gabapentin do you use when taking it as a sleep aid. Do you literally just take it in the evening like a sleeping pill. It would be wonderful if at last something would help me sleep. Even if my GP would just prescribe me a few so I could try it out.


Yes, I just take it at night, say an hour before I would like to go to sleep. I'm naturally tired and sleep well. I never wake up during the night when I take it, unless I take it with pramipexole - nothing counteracts its stimulating properties, for me. It is a bit sedating during the day - but that's what the Nuvigil/Provigil (modafanil/armodafinil) are for. I'm always tired in the morning and afternoon anyway - this doens't make it much worse.

I'd give a lot to turn around my sleep/wake profile....
Ann - Take what you need, leave the rest

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Polar Bear
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by Polar Bear »

Views - what dose do you take at night as a sleeping aid ? Just so I'm informed if I speak to GP
Betty
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ViewsAskew
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by ViewsAskew »

I was using up two different scripts I had from trying it as my primary drug (it didn't work for me). So, first I used up the 100 mg, then was stuck with some 300 mg capsules. Fortunately, I only had about 6 or 7 of them. They knocked me out, really knocked me out!

For what it's worth, the new formulation - the prodrug version that I can't think of the name of! - also does the same thing for me, but I felt very tired the next day. Could be that a lower dose would have worked.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

EeFall
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by EeFall »

Polar Bear wrote:Eefall & Ann -
this is very interesting to me. What dose gabapentin do you use when taking it as a sleep aid. Do you literally just take it in the evening like a sleeping pill. It would be wonderful if at last something would help me sleep. Even if my GP would just prescribe me a few so I could try it out.


The gabapentin makes me tired like the good ole days. It used to be when I was without WED that I would feel the need to sleep, I just felt really tired and would have to get to bed, that rarely happens anymore but gabapentin seems to give it back to me.

If it weren't for a stomach ache I'd be in bed now, very sleepy and keep falling asleep because of Gabadone!

By the way my dose is one capsule that is 300 mg although my script will allow me to take up to 6 of these (I suppose because one builds a tolerance).
Last edited by EeFall on Sun Sep 01, 2013 8:27 am, edited 1 time in total.

slimjim
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by slimjim »

I tried gaba, and yep it made me sleep ok but bewarned, it also made me very groggy the next day and resulted in me being unable to drive safetly. That was with 300mg tablets. Everybody, keep them posts coming... very intersted all 8) .

EeFall
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by EeFall »

slimjim wrote:I tried gaba, and yep it made me sleep ok but bewarned, it also made me very groggy the next day and resulted in me being unable to drive safetly. That was with 300mg tablets. Everybody, keep them posts coming... very intersted all 8) .


I will have to be careful of the sleepy driving for sure. The doctor did mention it could affect me for 9 or 10 hours after taking it. Your first post! Welcome aboard.

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