anyone's meds have worked 5 years or more?

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peanut1
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anyone's meds have worked 5 years or more?

Postby peanut1 » Mon Jun 09, 2014 2:50 am

I just started methodone since I was augmenting on the neuropatch. Is this the miracle drug that will help keep the symptoms at bay? The doc started me at .5 but I took 1/2 tonight since I'm not sure what the effects are and I want to be able to get up for work tomorrow. With that said, that was an hour ago and I'm not noticing much so I may take the other 1/2 pill since I really need to get some SLEEP!
So far, all the bloody meds I've taken only work for a brief amount of time. And I suspect that some of them (ledopa for sure) made the WED worse along some other things.
This is what I want to know: Have any of you really struggled with getting the right combo and then found one that worked for several years or is this a maze that we are all sorting through not knowing if we're ever going to manage this with meds or whatever else?

Sojourner
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Re: anyone's meds have worked 5 years or more?

Postby Sojourner » Mon Jun 09, 2014 4:40 am

I had a relatively good run with gabapentin (neurontin) lasting about a decade or so. Used some hydrocodone (vicodin) along with the gabapentin paricularly in the latter part of that stretch. Like many others here, I went through a period of trying lots of different meds, cocktails, etc. before lucking out with the neurontin. I'm guessing that there may be many others out there who have had years of good luck with meds but who do not visit or post on this board due to that success.

I too wonder how much "the meds" may have contributed to the worsening of my WED. On the other hand…...

Anyway, truly hope that the methadone will provide you with long term relief of your WED.


Wisher all here some peace this night.
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stitch
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Re: anyone's meds have worked 5 years or more?

Postby stitch » Mon Jun 09, 2014 6:44 am

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Yes, mine have worked for years. I take lots of meds for pain in my back and I also take gabapentin. But I take Mirepax for the RLS. I took requip for years and then started with mirepax. I take 0.5mg 3 a day and that is the max you are to take in one day. I do get the legs jumping some but nothing like it use to be. I just had my 78 birthday on the 8th and I have had RLS all my life. I hope this will work for me for the rest of my life. And I am hoping that will not be for many years. Take care. Jeannie/Stitch

peanut1
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Re: anyone's meds have worked 5 years or more?

Postby peanut1 » Mon Jun 09, 2014 12:01 pm

Well the methodone didn't work well at all. I took the other 1/2 pill and then a lunesta and still only got 5 hours sleep! this really worries me because I think the methodone was the last WED drug I didn't try. Usually I start out small and work up, but that didn't even do anything. I'm so worried and discouraged!!!! I've been trying to find a cocktail that works for the last 4 years. And all of them run their course in a very brief amount of time.

Polar Bear
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Re: anyone's meds have worked 5 years or more?

Postby Polar Bear » Mon Jun 09, 2014 3:14 pm

I started on Requip/Ropinerole about 8 years ago. It never really worked very well, and I continued to have symptoms 24/7.
About 6 years ago I added Tramadol which helped quite a lot. I recently swopped over to slow release Tramadol which is better (twice daily).
And cocodamol 30/500 is added daily as necessary.
This is the best symptom relief I've had.

However, I wonder...... when the Ropinerole did not work properly 8 years ago perhaps it would have been a good idea to have come off it then and tried another drug, rather than adding to the mix.
Betty
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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Re: anyone's meds have worked 5 years or more?

Postby ViewsAskew » Mon Jun 09, 2014 3:35 pm

peanut1 wrote:Well the methodone didn't work well at all. I took the other 1/2 pill and then a lunesta and still only got 5 hours sleep! this really worries me because I think the methodone was the last WED drug I didn't try. Usually I start out small and work up, but that didn't even do anything. I'm so worried and discouraged!!!! I've been trying to find a cocktail that works for the last 4 years. And all of them run their course in a very brief amount of time.


You may just need more. I take 25 mg of it.
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.

peanut1
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Re: anyone's meds have worked 5 years or more?

Postby peanut1 » Mon Jun 09, 2014 3:50 pm

Polar,
Tramadol makes me so sick along with Mirapex that it's just not an option to take. I have not heard of the other drug you mentioned.

Views,
I'll try doubling the dose and see what happens. I will say there was very little side affects to it. Hopefully it won't keep me up.

ViewsAskew
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Re: anyone's meds have worked 5 years or more?

Postby ViewsAskew » Mon Jun 09, 2014 4:02 pm

Oh, it definitely keeps me up!

I've found a semi solution, but it wouldn't work for anyone who has a job they must show up at during regular hours! I kept staying up later - I was always alert in the 10 PM to 3 or 4 AM timeframe. I'd been going to sleep between 5 and 8 AM in the past year or so.

Recently, I moved it forward to 11 AM to 7 PM. I was really surprised that I was usually tired at 11` AM and went to bed willingly. For different reasons, I recently moved it forward even more, so I'm going to sleep around 5 PM and getting up around 1 AM or so. Same thing - I'm always tired.

I am assuming that this will change over time. As my body adjusts to this, I'll eventually create hormones or whatever that keep me awake before I go to sleep. But, for now, it works. I also realize that it's not a viable solution for many people!
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.

Polar Bear
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Re: anyone's meds have worked 5 years or more?

Postby Polar Bear » Mon Jun 09, 2014 10:32 pm

Peanut, is it cocodamol 30/500 that you haven't heard of - it is 30mg codeine with 500 paracetamol.
The paracetamol is of no real value in the relief of WED symptoms but this is how it is prescribed here in the UK.
Betty
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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

QyX
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Re: anyone's meds have worked 5 years or more?

Postby QyX » Mon Jun 09, 2014 11:52 pm

You may just have to take more of the Methadone. You started with a very low dose. It might take some time to find the right dose.

It is not safe and risky to start potent opioids like Methadone at a high dose.

Have you tried other potent opioids like Oxycodone, Morphine or Hydromorphone in the past?

Joanie60
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Re: anyone's meds have worked 5 years or more?

Postby Joanie60 » Tue Jun 10, 2014 8:19 am

I have been supremely content with Percocet. My doc wanted me to take Methadone but my husband and I run 2 recovery homes for men in alcohol and drug addiction recovery. I just couldn't bring myself to take methadone haha. My doc said no problem, Percocet would work fine. I had also been on Percocet for various dental issues and knew I did not have side effects. I am on 15 mg daily ( three 5mg tablets: morning/afternoon/night) and have been for over a year and a half. Prior to that, I tried everything else (including iron infusion). Augmentation, appalling weight gain, and lack of symptom relief lasted until I took the opiates. The reason I am on the forum in the middle of the night is probably due to menopause??? idk, just having some insomnia problems, but my legs are fine. Today I only took afternoon and nighttime dose, so I had an extra pill for 2:00am ;-)

Please give the Methadone a good honest try. Stay away from antihistamines if at all possible (tricky time of year for some of us!!). I also have to keep my antidepressant (Lexapro) at lowest dose possible. Good luck Peanut!! I am so glad you found a doc willing to prescribe methadone. The opiates have been a miracle drug for me.

Let us know how it goes!

peanut1
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Re: anyone's meds have worked 5 years or more?

Postby peanut1 » Wed Jun 11, 2014 1:41 am

Yes, I had trouble sleeping with the methodone, it felt a little like speed,but took the edge off the WED. Then I did something stupid the next day and took multivitamins and got really sick with the combo. I don't mind slowly increasing the dosage (with or w/o docs permission) but what is the use if the stuff makes me hyper? I also got a bit nervous reading about how "addictive" it is. It certainly didn't give me any high.

peanut1
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Re: anyone's meds have worked 5 years or more?

Postby peanut1 » Wed Jun 11, 2014 1:49 am

Qyx,
I have tried morphine in the past, but at such a low dose it really didn't do much. I will probably go back to the methadone soon when the sleep crashes again. For me, the sleep goes in waves sometimes 3-4 hours a night with meds or 1 hour or less without and then there are times I sleep pretty good without any meds. Yes, I know it's extremely weird. Did the methadone keep you up as well?? And did you get used to it where you could sleep regular hours after a while.

Polar and Joanie,
Maybe I should ask the doc about percocet and the codeine. What are the side affects? Funny that I have not seen those meds in the nightwalkers magazine.

Polar,
how much neurotin are you on? here they call it gabapentin. I took it for a few months 600 mg. --worked wonderful and then the stuff didn't work anymore. Doc wanted me to up the dosage but I felt like a zombie all the time and wanted to try something else.

ViewsAskew
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Re: anyone's meds have worked 5 years or more?

Postby ViewsAskew » Wed Jun 11, 2014 2:36 am

peanut1 wrote:Yes, I had trouble sleeping with the methodone, it felt a little like speed,but took the edge off the WED. Then I did something stupid the next day and took multivitamins and got really sick with the combo. I don't mind slowly increasing the dosage (with or w/o docs permission) but what is the use if the stuff makes me hyper? I also got a bit nervous reading about how "addictive" it is. It certainly didn't give me any high.


There is research that shows that the hyperness is part of the disease, not because of the medication. For a long time, all of us thought that opioids alerted us. But, now they have found out that we have too much glutamate. Doctors eventually noticed that people who took any of the alpha 2 ligand drugs (gabapentin, gabapentin encarbil, etc.) were tired, but those of us who took opioids and some of us who took dopamine agonists were awake. So, they studied it and found out why - there is too much glutamate in our brains in the evening when we should be sleeping. The opioids remove the sensations, but we still can't sleep. Gabapentin (that is the generic name, the brand name in the US is Neurontin) reduces the glutamate, which allows us to be tired! Dr B suggested that taking even in a tiny bit of gabapentin might allow me to be tired more naturally.

I recently bought gelatin capsules so I could split a capsule into a 4 separate doses. I haven't tried it yet, though.
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.

ViewsAskew
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Re: anyone's meds have worked 5 years or more?

Postby ViewsAskew » Wed Jun 11, 2014 2:37 am

Oh - I forgot to answer your question. I've been using methadone for over five years. During that time, I've tried some other things, but have always taken an opioid.
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.


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