Has anyone had any experience with Ta... - Restless Legs Syn...

Restless Legs Syndrome

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Has anyone had any experience with Tapentadol (Nucynta) or extended release tramadol?

ookla profile image
47 Replies

As most of you here probably already know, I was on tramadol awhile ago and it was working well for three months, but then I developed sleep apnea and had to stop taking it. I've heard of another opiod that's similar to tramadol. I was wondering if anyone has taken Tapentadol (Nucynta) and gotten any relief from it (hoping maybe it would work for me, too, and not cause sleep apnea).

Also, I was wondering if anyone has tried the extended release version of tramadol and, if so, how effective was it? I was thinking maybe if I took that in the morning (instead of taking regular tramadol two to three times a day like before) it would cover me through the day and through the night and maybe not cause sleep apnea since I was taking it in the morning.

I realize this is pie in the sky hope. Most likely since tramadol gave me sleep apnea, any other opiod will probably do the same. :(

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ookla
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47 Replies

Nucynta was being used for Neuropathy ...It's for moderate to

severe pain relief..My understanding is that it is expensive. The narcotic

would surely work quite nicely..but I have this strong, strong suspicion

that the drug does have some powerful addiction properties..in fact, that

drug may be much easier to tolerate ..If you do go that route..please sign

up for the assistance co pay..the most that you will pay is $25 a month..

that's renewable..Don't ever cut them in half..it is a timed released dosage.

Be sure to go to the doctor armed with every single medication that you take..

some of the anti depressant's are a big no go..you can have cardiac arrest..

I don't know if it is good to take with your condition of sleep apnea..If you

do take it , it's important not to start in with any type of medicine or herbs...

without checking with your doctor..It's a class 2 drug..I don't know if that

drug is the right drug...and the cost makes it pretty unlikely to be the doctor's

first choice..Good Luck..I hope that you will make a good decision knowing

that this is one of this drugs that causes respiratory depression...don't drink

with it...the combination is deadly...sorry for being blunt..it's the mom in me..haha

ookla profile image
ookla in reply to

I'm not on any other meds (I take allegra d and flonase for seasonal allergies July - October). I don't drink at all, so there's nothing to worry about there.... but if it causes respiratory depression, then it's certain to bring back the sleep apena - and if that's the case, might as well stick to tramadol (unless nucynta lasts longer - tramadol seemed to only last about 4 hours and was starting to lose its effect after 3 months).

in reply to ookla

No one can predict how quickly you will reach the tolerance level..

Some people do great just taking the drug as needed, maybe you will be one of them..over time our bodies just get immune to the drug..so some doctors like to do a drug holiday or other doctors rotate the pain drugs..narcotics are in their own class..there is weak, med, powerful and then so powerful that any overdose can mean death..then the

doctor will prescribe combinations to reach a level of comfortable..

Some of the doctors like to go low dose narcotic, and then prescribe a longer acting anti inflammatory..it works to slew down the amount of Narcotic that is needed...with RLS ..narcotics are a sure thing..mostly..

but addiction does happen so respecting that ...the doctor looks for another solution..maybe gaba or something else ..You can play around for months and months to find the dosage of the correct drugs ..it's super important to keep a pain diary..so you don't waste time and money trying the combinations over and over again...

When you are on narcotics, you can't legally drive..do anything that requires balance, coordination..so pain pills aren't always the best..not for daytime use anyway..so alternative will always be the better choice..I love how well the narcotic pain pills work..but then when RLS starts ruining my day..I'm usually out living my life..I need to drive to get home..so do I drive or do I not and inconvenience someone else

You are a lawyer..you know what I mean..so pick a treatment that will be least invasive to what you do and where you have to go..

Are you still threatening to run red lights or go through stop signs? I remember when you did that just starting out or are you getting used to the drugs effects yet? =) ..

Tramadol can cause augmentation, i have read that and seen where other people have used Tramadol and then experienced augmentation. I havent heard of a extended release Tramadol, but then i havent heard of the med you have mentioned in your question, unlike Yikes who does know of it. :)

ookla profile image
ookla in reply to

Oh no, don't tell me that!!! Tramadol is my white knight waiting for me in an ivory tower somewhere.

in reply to ookla

Oh sorry to rain on your parade....:( Better it works for while and you get some relief than not get any relief by not taking anything... :)

in reply to ookla

If you took another tramadol at exactly 5 hours later..

after the first one, what would happen? I mean...

glass of water next to bed..set alarm to take second one..

don't wake up all the way..take that second one...I bet that

you would sleep all night long..and probably would be hauling

butt the next day..go to bed earlier..so you can get that second

dose in ??? if the doctor agrees, of course..

maybe I need to record some of these questions and ask

nightdancer..she can find out from her doctor..I am just spitting

out some ideas..to keep a steady longer sleep without

doping ya up with drugs that will not put you to sleep...daytime..

Anyone with ideas..give a shout..we are brainstorming this

issue out since like a million of us have it..

in reply to

Not commonly but it is available..I mean any doctor can prescribe it

if they think of it...the initial punch is less than the immediate release..

I would suggest use for someone who is affected but not severely...

You could try it but it's not used much so the doctor may not think of it..

I wish that Toradol didn't have such severe side effects..it comes in

nasal spray..Retinal problems aren't all that common..it's the most

powerful anti inflammatory that might help someone with severe pain..

That drug is used so sparingly though..I never asked why..It worked

on my pain better than any prescription drug worked..- the common

delivery is by IV but there is a nasal spray....It seemed to wipe away

the augmentation or helped when I became immune to the narcotics..

There is some big punch like rocket fuel..to shut down all pain receptors

quickly..then the extended Tramadol might work as it should..

I am thinking about how RA pain is dealt with.. the TFN blocker

has pain relief properties in it..then Kenalog 40 (shot) is added..

it's the rocket fuel for pain relief..swelling..(also kills immune system)

but do you Know what I mean by using the right drugs and perfecting

the timing to add the other drug..so it's like a power punch of relief..

Obviously I have been paying attention to how and when drug

combos work..If not Toradol...then what other drug...Oxycontin

is too much..too strong..will disable daytime activity..I will have

to keep studying ..look for proof that I am on track..have an idea..

Tramadol and Toradol ....the dol is the hangup...

XX Karen

Ahhh, Ultram ER, is the Tramadol extended release. :) Just a thought, the reason people take extended release meds of any sort, is for daytime symptoms and it saves taking more than one pill at any time of the day. So, not sure just taking the one pill would make any difference. Who knows...!!

ookla profile image
ookla in reply to

I have symptoms all day long at work and then at home sitting on the couch relaxing and then at night in bed trying to sleep... so I was taking it around 8 am to get through work, then again around 6 pm to get through the evening, and then again around 10 pm to sleep. But I think I see what you're saying... that taking the one pill in the morning would still have the same affect as taking the three pills throughout the day and would still cause the sleep apnea. And then there's the augmentation you mentioned. Darn.

in reply to

so if you know that RLS will make an ugly come back at 2 am..

set your alarm for 130am and take another 4 hour pill to stay

sleeping? I don't know why doctors like to pony up drugs before

they increase the narcotics especially if it is the painful kind of

RLS...

The extended release just slowly releases the drug through out the 24 hrs. Just like the Neupro Patch which is a 24 hr patch. So, yes thats what i mean, by just taking one pill rather than spacing out 3 pills over the day thro to the night. I would think be just the same...

ookla profile image
ookla in reply to

There has to be a way to trick my body into working *with* me on this instead of against me all the time. I thought we were supposed to be on the same team!

in reply to

the initial release is what kicks butt..it's like a huge dump all at once

with the regular..the other does space 1mg or whatever the time release

allows every hour.It's missing the big dump or the powerful all at once

Ahhhh...relief..

If you take the pain medicine before it starts roaring, you can get away with

the slow release but once it starts roaring hardcore..it needs the big dump as in the shorter acting medicine..is that correct? Am I pulling any rabbits out of hats today? And by the way..You may keep my magic wand - the one that

I used to use to grant wishes...I granted myself a wish and it is coming true..

be careful of what you wish for. =)

Well, as you said, the only way it seems that the Tramadol will work is with the cpap machine. Dont loose heart just yet, because people end up with augmentation taking Tramadol, you could go for months and months without it happening to you or even longer or not get augmentation at all. I am just letting you know the facts, please do not shoot me yet. lol.. Now if only i could wave a magic wand over you, so your body would just except the meds and work and not cause you all these problems i would wave that wand like mad.... :)

ookla profile image
ookla in reply to

I know you would. You've always been so very kind. Thank you so much, I greatly appreciate it. :)

in reply to

Someone hangs around me too much..I am the one who waves magic

wands..I want your wand back....I mean mine..haha.=)

in reply to

No no, its MY magic wand....i use it for others on other forums. I think i have over used it, it doesnt seem to work very well at the moment, will have to ask the elves for a new one....ha ha. :)

spike28 profile image
spike28 in reply to

stop argueing about who's wand it is, and wave it over me, im in dire need of some magic dust right now !!

in reply to spike28

LOL, waving my wand, but if mine doesnt work try Yikes's wand. Her magic dust could do the trick.

spike28 profile image
spike28 in reply to

best get both on the job please love, still in bed, been here a few weeks (feels like months) with plurisy (sp) first day ive felt well enough to moan, did you miss me

in reply to spike28

Oh no, thats not good, glad you are feeling a bit better, enough to get on here. Yes, did wonder where you were, but that happens, people go quiet for a while. How was your RLS, being stuck in bed. ?? Sending my best wishes for your recovery... :)

spike28 profile image
spike28 in reply to

oh the dreaded RLS it was and is still wonderfull not, think the extra meds were objectional to it, the beast !! been wearing two pair of jimmies as i keep kicking the bedding of in my slepp

in reply to spike28

What are you taking for the plurisy (sp) oh and the PLMD is not nice this time of year when you are kicking the covers off. Not that i know, as i dont have PLMD.

spike28 profile image
spike28 in reply to

its downstairs :) tell you later, and its non stop rls not plmd dont go giving me more than i can handle woman :P

in reply to spike28

Are you sure you havent got PLMD, kicking the bedding off your bed in your sleep, is usually PLMD. That happens while you are asleep and you dont know you are doing it. Hope i am wrong, dont want to add to your troubles right now. :) I am wondering if the extra med is making your RLS worse, thats why i asked what it was.

in reply to

you get used to the cold at night..if anyone felt the temp of your ice cold skin..they would think that you went outside for a midnight walk..covering yourself too much can actually wake me up..I kick them..it looks like a good pillow fight and a toga party took place around my bed in the morning..

World war 3 goes on with the covers, sheets, pillows..It's a chore to make the bed in the morning..

spike28 profile image
spike28 in reply to

not making mine, im ill, and getting waited on :)

in reply to spike28

:)

in reply to spike28

make sure to always tell your doctor that you had pleurisy anytime they want to take a picture of the lungs..Pleurisy

hurts like the devil..it scars the lungs..

no worries, it will heal..I had it when I

was 18...I had to take tiny breaths..just like bunny sniffs to keep myself breathing..I was given some codeine to live it out..the doctor wanted me to feel that I had it but did not want to depress my lungs..Damn, I can remember feeling like I didn't have enough air and then when I breathed, I nearly passed out if I didn't from the lung expansion..

What are you taking for it? =)

Some info on Tramadol and augmentation.....i also read on another site where it said SOME cases of augmentation taking Tramadol have been noted.

ncbi.nlm.nih.gov/pubmed/172...

in reply to

You call it augmentation..I just call it immune to current dose, schedule..

My belief is that it happens with all pain relieving medicines over time..

People that work at Walmart see the person buying aspirin, tylenol,

ibuprofen salves, gels, inserts..whatever they can find..and they

might take aspirin combine or take one at a time in rotation..the problem

with narcotics is that they are in the same class..(as a group) so there

has to be something more that will give it a punch.. I work where invention

takes place..RLS is so darn hard to treat because of the symptoms not

being all exactly the same..but the painful part shouldn't be an issue..not

at all..the URGE to move the legs is the kicker...what controls that urge..

How do we shut that down without shutting down the entire system..

anyone who wants to jump in here can..brainstorming sessions are open

don't be shy..maybe something that you say will ring a bell for someone

else..No throwing shoes or rotten tomatoes for answers..we are just thinking

out loud..WE really need a brainstorm button so the correct information

lands where it should and the brainstorm stays out of the way...

I might take those questions elsewhere...so I won't confuse others..

I have to disagree with you on this one Yikes, lots of people take strong pain meds for years and years without becoming tolerant to them, and they keep to the same dose. People who are buying all that stuff at Walmart, could have issues which we will not know about.

Not everyone can tolerate the strong pain meds, i am one of them, so for my pain i get along side my RLS, i cant take anything to relief that pain, i rely on the Pramipexole, if that is working then it seems to take care of the pain too. Of course this is just my experience. The same as the urge to move my legs, if my med is working ok, then there is no urge to move its under control.

Yes, narcotics are all in the same class, just as the dopamine ones are. But its different ones work on different people, side effects can be different. The Tramadol is the only one i have read that has caused augmentation, maybe because its not a true narcotic.

in reply to

I can agree on the tramadol being the easiest to tolerate..that's been

documented plenty...does it make a difference in the delivery of the medicines...it comes in different forms over here..we have nasal sprays,

pills, infusions, injectables, applied to the skin(that one in the works) suppositories...( there ya go..someone could pop the quarter in the slot

while you are asleep...is laughing at that) but anyway, why does the

sick happen..is it the breaking down in the tummy or is it the system overall that cannot deal with the chemical in the body? I always thought that eating

a light snack with the pills made the tummy take it better..cut down on upset..

so what if the method of delivery (of the medicine) changed? =P

in reply to

Yes i am laughing too, at your slot machine method. :) I dont know if its the tummy or the overall system that objects to opiates for me. I can take one Tramadol, and i am not sick, but just way too sleepy the next day, and one didnt help my RLS, taking the two Tramadol spaced out 6 hrs between doses, i woke in the night feeling weird, then after getting up i felt sick then was sick, soooo much so, i thought something awful was going on with me, scared the life out of me. talking on the phone to the out of hours doctor who was trying to calm me down, not a night i will forget, ever. Codeine has a similar affect on me, doesnt make me sick, but spaced out and could sleep during the day for ever. :P

in reply to

So what if you took one tramadol and for your pain..umm..

hmm..and coupled that with ibuprofen and then you

would need a high protein mixed with a good fat..

to coat the tummy...hm..like a yogurt or Oatmeal...

then set your alarm to not quite wake you up..

re-dose with a half tramadol...and a tylenol..or two

to keep pain at bay..could you tolerate tramadol

on an empty tummy...I would say to eat a snack but

it's heck on your teeth to eat and then not brush..

or if everything came in a different method of delivery..

nothing is off limits if it is absorbed into the body..

Our tylenol is allied to the skin, taken orally or slot machine

delivery...I actually have no idea of the delivery of the others..

except I do know 100% that the nasal spray Nucynta

targets the pain..contains other properties that work well

on nerve pain..there has to be a combo either already made

or we could create our own concoction and delivery method..

I don't know if suggestion is subject to the laws of the forum

but If someone said that they personally use the combination

or their own creation..that's not advising anyone..so hmm..

I have to think on that some more..maybe dig my way to that

information..I am sure that I saw something on it..at one time. .Pain control is always being brought up by people that I know.

Someone has to know what's out in the market or what's in the pipeline..I will try to get at it..I have like a billion things going on cause too many cooks were stirring the pot yesterday and we lost 4 days worth of work on every end last night..glad I caught it...I will look later when i get some time. promise..xx

Needles are needles..some people hate them..but what about plugging the

slot machine with a quarter? haha..

Mispiernas profile image
Mispiernas

So interesting read! So augmentation means getting used to the medication? How often can one have Tramadol in the day, since after 9 pm I does not let me sleep, but if the RLS is really bad I do take it late. But having put on eight and liquid in stomach and legs is that the tramadol,or pregavalin ? A new thing prescribed by a neurologist that helps me sleep is Clonezepan, and I'm feeling not so sleepy in the mornings. But I would like to abandon Tramadol and I don't know how. I have stopped antidepressant and learning to cope well enough. Pregavalin next mainly because of the fluid retention and putting on weight. Also the Neupro more than 1 mg is not a good idea because the shopping becomes bankruptcy and I loose all sense of duty and responsibility . But sometimes I do have to use them.

in reply to Mispiernas

When I quit with my narcotic, it was a slower process..It took me 3 or 4 weeks to do it without any withdraws...I cut the dosage down by a quarter every single week until I didn't have but a spec left...I replaced it with another

type of medicine that was not a class 2...I cannot have tramadol..I have a chance of having a seizure with another medicine that I must take..The risk is not worth it to me..so no way, no how but I did use it at another time in my life.. not for RLS but it did stop my legs from going at it all night..xx Karen

Hi, Mispiernas, this link will explain what augmentation is and what meds are usually the culprit to cause it.

rls.org/Document.Doc?id=1985

Mispiernas profile image
Mispiernas

I have read that there is a bacteria in that eats the iron the brain needs and if you kill the bacteria with diet and antibiotics you improve/cure RLS. So at the moment I'm on a diet of meat+fruit+vegetables. No beans or nuts no dairy or grains no sugar. So I'm very excited to see if it works.

in reply to Mispiernas

Love the idea of cleaning up the diet...It's one that I would stand behind because only when the body is in tip top shape..including activity, burning enough calories a day, getting the heart rate up...if you are the best that you can be physically, mentally, and the body cannot take care of itself..that's the only time that medicines should be used...

Antibiotics are a lifesaver for True bacteria that will keep multiplying until

there is more of the bacteria than space (the body) so yes, antibiotics can

and should be used in those situations..and only then...

Bacteria is really pretty much contained to one little area or big area.. the problem with it is -is that it kills ALL bacteria..that is not really a good thing because the good bacteria works hard to keep everything working as it should it is needed to protect the tissues from letting the bad guys in...it coats everything and makes your body a well oiled machine...you can end up

with some seriously bad bacteria in the digestive track, yeast infections..all kinds of bad stuff starts invading where the good stuff used to protect you..

the PH of the body can even be affected..it does a number..the body knows that something just happened..big..so Antibiotics really need to be taken only for obvious infections like pneumonia and meningitis..it's when doctor's get pressured into giving antibiotics for viral things that the bugs (bad bacteria)

starts evolving into worse big bugs that we can't cure very easily..if at all

like flesh eating bacteria and other ugly little things...

I love antibiotics but they sure don't get the respect that they deserve...

they are way too common..but that's my opinion...

Nuts, seeds, I have never heard that they were a bad thing..Nuts and seeds

are full of the vitamins and minerals that our bodies need..I always thought

of them as natures perfect food..They have good fats in them, are loaded with protein, low carb values..the wheat, flour, oats..I am not a fan of..they fall into that gluten family...I learned to love heavy weighted breads if I have to have

a sandwich..the weight is the fiber, the bread may contain nuts, whole grains..

I don't even miss white bread that much..

Rather than concentrating on what foods I cannot have, I start thinking of

what my body actually needs...If I can actually even eat what I must on

the food pyramid, then I can have seconds of the groups..there is a fat

group on there..I can have a little ice cream..just not much of it everyday..

My goal is to get the best function out of the body that I have...This is the

fuel for my body...Just like a car doesn't perform right on watered down or

junky gasoline, neither does my body if I eat junk foods..empty calories...

so let me tell ya, that's a lot of food to eat...just eating that pyramid...I get the

fruits and veggies in by making protein shakes and I actually throw it

all in a blender..add some yogurt,(low fat, low sugar) the fruit sweetens it..

I can add some powder protein...a tiny spit of water..and blend it all up...

Honey is a natural antibiotic by the way...it fills me up and I repeat in the day.

I am eating for the good of great and I am not overweight, not skin and bones.

I feel better, have more energy when I am treating myself right..

These are just me and the way that I function..I am a trier.. I am making

some changes by reducing the drugs with the help of my doctor...

If I fail, there is drugs but I will know that I did everything in my own power..

I haven't really thought much about this stuff...can you tell? =DD.

I am still learning, looking for more information so it's good that we are

bringing some ideas to the table..someone might hit on something..=)

Twitch1972 profile image
Twitch1972

I am new here and have just been reading through some posts and came across this one.

I have been taking Tramadol 50mg 3-4 times daily for 5+ years. Recently it seems to not be working quite as well so my doctor suggested that I try Nucynta. My personal experience was not a good one at all. It would only take away my severe symptoms for 2-3 hours. It caused me to feel very tired but to not be able to sleep. I had to take hot baths several times a day and through the night to get some relief from my symptoms. I actually stuck with it for four days just to see if it would eventually start working like my doctor had hoped. After no changed on that last day I waited 6 agonizing hours (dr said to wait 6-8 hours, couldn't wait one minute past 6:) I started the Tramadol again.

Women can get side effects that effect our hormones and just mess everything up. That also happened to me.

I had never heard of Nucynta before my doctor told me about it nor do I know anyone taking it so I only know what my experience with it is.

I hope if you take it that it works wonders for you though. I know that a lot of the most common RLS medications give me some pretty severe side effects so just because I can't take it definitely doesn't mean that it won't work for you.

ookla profile image
ookla in reply to Twitch1972

Thanks for responding. Like you, I can't take most of the RLS meds without bad side effects (and even if it weren't for the side effects, they haven't been effective anyway). So if you can't take nucynta, it's probably a safe bet I can't take it, either. I can't even really take tramadol. That was the only med that's helped me at all so far, but after three months it started to be less effective and started giving me sleep apnea. I'm kind of back to square one now.

Twitch1972 profile image
Twitch1972

What about codeine? I don't take it anymore but when the RLS was just starting to become as severe as it is I got really sick and needed prescription cough medicine. My doctor gave me a strong cough medicine with codeine and I discovered that it took my RLS symptoms away completely and actually lasted for quite a long time. I definitely don't have any desire to take codeine everyday and be wasted all the time, lol, but to this day nothing has ever worked as well as it did. Even at its best the Tramadol has never been quite as good. The tramadol is still working for now. I'm taking the maximum dose more days than I'm not now. I will continue to follow this post as I am curious to see what ends up working for you. And that may give me an idea of what might work for me once the tramadol isn't an option any longer.

ookla profile image
ookla in reply to Twitch1972

I'm afraid you probably won't get any helpful leads from me. I can't take codeine because it makes me vomit. 50 mg of tramadol is the only narcotic I've been able to take. I'm going to give klonopin another shot once I'm off gabapentin (taking it in the evening this time). When/if that doesn't work, I'm just going to go back to tramadol and get treatment for sleep apnea when it kicks in. I have no idea what I'm going to do when the tramadol stops working.

David7 profile image
David7

I have mild sleep apnea and take Methadone 2.5mg or 5 mg when needed and it works quite well.If your sleep apnea is bad you may consider a C P A P machine to help you breath easier. But Methadone is quite a good RLS

Medicine to add to your nightly routine .

Peace,

David

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