anyone's meds have worked 5 years or more?

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

Postby Polar Bear » Wed Jun 11, 2014 3:26 am

Peanut - I don't take neurontin or gabapentin.

My medications are as follows;
Ropinerole - 1 mg pill x 3 daily
.5mg x 2 daily
.25mg x 3 daily

Tramadol - 100mg Slow Rlease capsules x twice daily

Cocodamol Codeine 30/500 to be used if and when required.

Lanzoprazole - 20mg capsule x 2 daily
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

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

Postby peanut1 » Thu Jun 12, 2014 3:50 pm

That is interesting about the gabapentin. It is a good drug. I have taken opiods such as vicodin, lunesta etc and not felt the hyperness I did with the methodone. But it's entirely possible that I didn't take enough of it or try it long enough. Thanks for the feedback!

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

Postby Joanie60 » Sun Jun 15, 2014 5:03 am

[quote="peanut1"]Qyx,

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.

Sorry, just noticed this question. Percocet is an opioid, I do not have any side effects other than a slight "buzz" from time to time. I looked back over my calendar and I have actually been on it for over 2 1/2 years, not 1 1/2 (time flies when meds are working!!). I seem to be having break-thru symptoms this week...crossing fingers that it is temporary.

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

Postby Joanie60 » Sun Jun 15, 2014 5:09 am

ViewsAskew wrote:
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.


ViewsAskew: Have you (or others) experienced drastic weight gain on Gabapentin? I gained 8 lbs in 8 days on what I assume was a "starter" dose. It was a long time ago, so I am not sure of the dose. Any other ways to reduce glutamate? I think this is what the big Hopkins Study is about?? God bless those who can wean off all meds and stay off them for the 10 days before the clinical trial~ I didn't get any further in the screening than that haha.

Joanie

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

Postby EeFall » Sun Jun 15, 2014 6:52 am

peanut1 wrote: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?


Most of the narcotic type meds give me hyperalertness. The doctors are being pressured not to give high doses of methadone, oxycodone, Suboxone (virtually any of those type of meds) so they will increase them only to a certain point and then they will change what you are taking. That is what has happened to me many times over the last 14 years. Mirapex worked for several years, but even Mirapex had its times when it just didn't work as it should. You said it, "a maze that we are all sorting through not knowing if we're ever going to manage this with meds".

I have taken so many different meds for this, and different cocktails of meds, that I have lost count. Either they work for awhile, not at all, the side effects are so horrible (usually they make me very grumpy), augment on them, or as I mentioned above I develop a tolerance for them and the doctors refuse to up the dosage so I am back to square one. My WED is under control but I am having a very difficult time being able to sleep more than 2 nights in a row well. This is night 3 :lol:

crl363
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Re: anyone's meds have worked 5 years or more?

Postby crl363 » Wed Jun 18, 2014 1:05 am

peanut1 wrote:I just started methodone since I was augmenting on the neuropatch.


Peanut, how soon after coming off the neuropatch did you start using methadone?

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

Postby ViewsAskew » Wed Jun 18, 2014 7:13 am

Joanie60 wrote:
ViewsAskew wrote:
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.


ViewsAskew: Have you (or others) experienced drastic weight gain on Gabapentin? I gained 8 lbs in 8 days on what I assume was a "starter" dose. It was a long time ago, so I am not sure of the dose. Any other ways to reduce glutamate? I think this is what the big Hopkins Study is about?? God bless those who can wean off all meds and stay off them for the 10 days before the clinical trial~ I didn't get any further in the screening than that haha.

Joanie


I can't speak for others - my memory is that people have gained weight on it, but I do not recall anyone saying that much that quickly. You could try to do a search....but it could be hard to pinpoint that specifically. You might have a lot of posts to read.

Per others ways to reduce glutamate - from what I've read, they aren't sure. They just know that these meds do. There is no reason to believe that diet would do it, but it's possible. I seem to recall I posted something about this in the last month or so...I ran across something about this that I thought might work. .... I just did a search on glutamate and found my post viewtopic.php?f=5&t=4749&p=74110&hilit=glutamate#p74110. Read that and see if that might help.
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: anyone's meds have worked 5 years or more?

Postby EeFall » Wed Jun 18, 2014 8:05 am

"Gabapentin (that is the generic name, the brand name in the US is Neurontin) reduces the glutamate, which allows us to be tired!"

It never seemed to work for me but sitting here at 1am in the morning not able to sleep I am considering going into my stash and trying some :)

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

Postby badnights » Mon Jun 23, 2014 1:44 am

Any other ways to reduce glutamate? I think this is what the big Hopkins Study is about??

Per others ways to reduce glutamate - from what I've read, they aren't sure. They just know that these meds do. There is no reason to believe that diet would do it, but it's possible.


JH work will lead to a chemical solution. Diet may actually be a viable non-drug solution, for reducing glutamate (the most common excitatory neurotransmitter) and/or raising GABA (the most common inhibitor), but exactly what components of diet are important will probably remain unknown for a long time. The only thing being tested is the Wahls diet as a whole, and nothing has been publihsed yet.

She has a theory for MS, so maybe it will work for us (she mentions in her book that lots of MS patients have WED/RLS but does not give a lot of details). The theory is that all these illnesses – autoimmune and neurological – can be helped significantly by providing our bodies with sufficient amounts of the all the required nutrients, and by reducing or eliminating carbohydrates (simple and complex) and processed foods. Not everyone needs to do this, she claims, but perhaps everyone who is sick meaning everyone whose genetic makeup and life experience have combined with sub-ideal diet to cause problems.

No hard evidence yet to support her claims.

She uses the American Food Guide, or whatever it's called, to decide how much of each of the known nutrients is needed, while supporting the use of food instead of supplements because of the likelihood that there are critical nutrients that haven't been discovered yet. I wonder how much good research went into setting those guidelines (American Food Guide), and if they themselves might need some work.
Beth - Wishing you a restful sleep tonight
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peanut1
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Re: anyone's meds have worked 5 years or more?

Postby peanut1 » Mon Jun 23, 2014 7:39 pm

Beth,

That is interesting concept about the nutrients. I recently started taking digestive enzymes hoping to have the minerals such as calcium and iron absorb better. So far, none of it has worked, but I thought I would try a good week with it. I know that refraining from excitoxins such as the MSG should help reduce or at least not raise the glutamate.

sleepdancer2
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Re: anyone's meds have worked 5 years or more?

Postby sleepdancer2 » Sun Jun 29, 2014 10:13 pm

There are meds I've taken for over 5 years, but I can't say they actually worked the whole time as augmentation was an issue for me. I have for over 3 years now maintained a satisfactory degree of success calming my legs using a TENS unit.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

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

Postby Suckerbeagle » Mon Jul 21, 2014 10:11 pm

ViewsAskew wrote: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!

I think what are doing is "outwitting" the gremlins. But oh they do catch up with you. I did this for two and a half weeks after dopamine stopped working. I was waiting for an appointment with a top neurologist who saved my life. I have been on gabapentin, Klonipin and vicodin for over eight years now. The Vicodin is the magic bullet—no side effects just blessed relief. I have always thought that the progression what Vicodin to oxycodone, them to methadone and for some unfortunates,morphine. I was grid on oxy for two months—made me grumpy and gloomy. The doc put me back on Vicodin and it's working. I know just how fortunate I am.

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

Postby ViewsAskew » Tue Jul 22, 2014 3:48 am

I, too, did not like Oxy, Suckerbeagle. Very grumpy - clenched jaw - somewhat mad, too.

I think we each need to trial them and find the one that works best for us. Many docs don't like doing that. As with you, I am very grateful I have a great doc. I've had many not great ones - what a difference that makes!
Ann - Take what you need, leave the rest



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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, and are not medical advice.


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