What's worked the longest?
What's worked the longest?
Just curious as to which meds have been working the longest for some of the lucky ones out there?
Opiates have consistently worked for me since diagnosis a few years ago. Hydrocodone will pretty much give 100% relief at low doses, although with codeine I'd rate it somewhere in the 90 - 95% range. I can still detect a faint sensation, but the urge to be in constant motion is gone and it allows me to rest.
Tramadol also works pretty well at 100mg+ but I stopped it for other reasons.
Tramadol also works pretty well at 100mg+ but I stopped it for other reasons.
Requip worked for 2 years and my current combo of Ultram and Neurontin has worked for around 6 months. Ultram no longer quite as effective, but doc won't give me anything else because of my age. Ultram make RLS tolerable, although does not fully relieve symptoms.
At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us. Albert Schweitzer
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Until opioids, I didn't have good luck with anything. No runs worth keeping track of! Some didn't last more than one dose.
But, methadone has been quite consistent, no tolerance, little breakthough (and usually my fault for incorrect timing) for almost two years. I've read reports of people on opioids for many years (the longest was 17 years in one study). So, until they find new treatments that resolve the real problem, I'll hope I'm just like that person.
But, methadone has been quite consistent, no tolerance, little breakthough (and usually my fault for incorrect timing) for almost two years. I've read reports of people on opioids for many years (the longest was 17 years in one study). So, until they find new treatments that resolve the real problem, I'll hope I'm just like that person.
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.
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.
Zach wrote:Opiates have consistently worked for me since diagnosis a few years ago. Hydrocodone will pretty much give 100% relief at low doses, although with codeine I'd rate it somewhere in the 90 - 95% range. I can still detect a faint sensation, but the urge to be in constant motion is gone and it allows me to rest.
Tramadol also works pretty well at 100mg+ but I stopped it for other reasons.
Zack, can I ask why you stopped the tramadol?
Mia
I think that was around the time when I had my seizure.. Although I didn't really stop taking it, my doctor wanted me to stop.
After I stopped taking my anti-depressant (Luvox) I haven't had anymore problems with seizures or anything. So I'm still taking it, of course.
Tramadol does not play well with other medicines sometimes. The Luvox was preventing it from metabolizing properly, so I ended up with what you would call an overdose I guess. On it's own Tramadol lowers the seizure threshold, and anti-depressants can make that worse. It was a calculated risk at the time.
I still suffer from a bit of hyperreflexia because of it, but it's tolerable as an intermittent issue that only crops up when I take a larger dose and am tired.
After I stopped taking my anti-depressant (Luvox) I haven't had anymore problems with seizures or anything. So I'm still taking it, of course.
Tramadol does not play well with other medicines sometimes. The Luvox was preventing it from metabolizing properly, so I ended up with what you would call an overdose I guess. On it's own Tramadol lowers the seizure threshold, and anti-depressants can make that worse. It was a calculated risk at the time.
I still suffer from a bit of hyperreflexia because of it, but it's tolerable as an intermittent issue that only crops up when I take a larger dose and am tired.
Zach wrote:I think that was around the time when I had my seizure.. Although I didn't really stop taking it, my doctor wanted me to stop.
After I stopped taking my anti-depressant (Luvox) I haven't had anymore problems with seizures or anything. So I'm still taking it, of course.
Tramadol does not play well with other medicines sometimes. The Luvox was preventing it from metabolizing properly, so I ended up with what you would call an overdose I guess. On it's own Tramadol lowers the seizure threshold, and anti-depressants can make that worse. It was a calculated risk at the time.
I still suffer from a bit of hyperreflexia because of it, but it's tolerable as an intermittent issue that only crops up when I take a larger dose and am tired.
well as you know, I took my first ever dose of Tramadol today at around 4pm my time. Then I took another one about 1 hour ago, I have heard it can either make you very tired, or give you high energy, I am not feeling anything, but the most important part is that so far, I have NO RLS, WOO-HOO!! YEAH............
MIA
If I am sleep deprived, it will help me fall alseep. But otherwise, it does have mild anti-depressant properties which can account for a mood/energy boost. Almost any painkiller I've ever taken has had that effect. Sometimes I could stay up for days at a time by taking a booster dose every so often.
I think I stayed up for something like 4 days straight once, back when I was on hydrocodone. It's not something I would reccomend
I think I stayed up for something like 4 days straight once, back when I was on hydrocodone. It's not something I would reccomend
Zach wrote:If I am sleep deprived, it will help me fall alseep. But otherwise, it does have mild anti-depressant properties which can account for a mood/energy boost. Almost any painkiller I've ever taken has had that effect. Sometimes I could stay up for days at a time by taking a booster dose every so often.
I think I stayed up for something like 4 days straight once, back when I was on hydrocodone. It's not something I would reccomend
I do not like to brag about this, because I am not crazy or anything, but one time I stayed awake for 4 days straight and saw dead people dancing in my bedroom. I thought I had lost my mind for sure, I was only 28 years old, but it turns out the doctor said that anyone and everyone sees things that are not really there when they haven't slept for 4 or 5 days straight. Wow, was I relieved when he told me that news!! Hahahahaha.
Mia
Z, Re: the Luvox not allowing the Tramadol to metabolize properly... Is that something the doc. told you or something you researched Reason...seems like on infrequent occasions when I take vicodin early in the day or evening for some other pain related issues (back) the relief is much more noticeable than when I take it later in the evening and in conjunction with neurontin. This is the case even when the earlier dose is a 1/2 tab as compared to a full tab or full tab and a half that I might take with the neurontin. Guess I was wondering if the neurontin somehow interferes with maximum vicodin benefits. Was wondering if that is a researchable kind of thing or not or is something a doc would tell you based on his experience with patients etc. Wonder if others have somewhat of a similar experience i.e. vicodin not as effective when combined with neurontin.
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I was told and I believe I did look it up to verify it.
I don't know much about your combo though.. It could be anything from what you've eaten recently to how intense your symptoms are at the time you are dosing.
I don't have the time to look it up at this moment, but I can try and find out later today when I am home from work
I don't know much about your combo though.. It could be anything from what you've eaten recently to how intense your symptoms are at the time you are dosing.
I don't have the time to look it up at this moment, but I can try and find out later today when I am home from work
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Was wondering if that is a researchable kind of thing
Mark, it is researchable - I think Drugs.com has a drug interaction checker, which would be the easiest way to look it up. If you want to really dig deep, it all has to do with metabolic pathways. Like, if you're taking hydrocodone alone, it is metabolized at a certain rate. It you're taking it with say, St. John's Wort, which induces the CYP450 system, the hydrocodone will be metabolized more quickly, so you will need more. And if you're taking a med that is metabolized on the same metabolic pathway as the hydrocodone, the hydro will be metabolized more slowly...
Think of it as traffic congestion. Anyway, we do have a pharmacist hanging around here, (Josh) who could probably explain that a whole lot better than I can.
But it is researchable.
Susan