Options? Feel I'm Out of Them

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Options? Feel I'm Out of Them

Postby Mastifftrouble » Thu Jan 31, 2013 10:24 pm

I am new to this board but have suffered with severe RLS for over 15 years. I call it severe because without medication that works I will walk the floor every hour for 10 to fifteen minutes to try to get an hour or so of sleep. It is something that will haunt me during the day as well and not just in my legs. it is always most severe at night. Daytime occurances and in other extremities can come and go.

I joined because I think it helps to know there are others who suffer like this as well. I get tired of hearing how I should take Tylenol PM or something OTC so I can get a good night's sleep. I used to be very active physically - running, cycling 20-30 miles a day but the last several years battling this have taken a toll.

I was on Requip for about 12 years which held the RLS at bay. Then side effects like extreme nausea started then I had to start increasing the dosage which increased the side effects. My PC prescribed ambien then anti -nausea meds to combat the side effects. I have been seeing an RLS specialist since November. I went off Requip and on to Mirapex to prepare for DAWS. I was tested for low iron levels. Iron levels are normal much to my dismay. Withdrawl from DA was not a piece of cake especailly over Christmas. I was optimistic about Gabapentin but that has not provided any relief.

Next step is Methadone. I tried this for a week but it left me with anxiety attacks ? I felt like I couldn't breathe. I have asthma so I am sensitive to anything that seems to affect my breathing. My doctor says Methadone will work if I can give it a chance. He would like me to cut my dosage in half and try an anti anxiety pill for a week or so until I am confident that I can tolerate the Methadone.

I feel like I am running out of viable options here. My doctor tells me most people do not have side effects from methadone. Has anyone else had experience with methadone? I just want to have a semi normal life again or at least have more good days than I have bad ones.
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Re: Options? Feel I'm Out of Them

Postby ViewsAskew » Thu Jan 31, 2013 11:56 pm

Yep, we get where you're coming from. Wish we didn't and wish you didn't!

Methadone may not be a good option for you because of the existing breathing concerns. I have no breathing issues, but when I take methadone (which is great in many ways), I get asthma. Run up the stairs? I'm at the top wheezing and feeling I'm going to explode! And, from what I've read, it's contraindicated in people with breathing issues -but remember, I'm NOT a doctor! I've taken methadone off and on for about 7 or 8 years. When I take it every other day, instead of every day, I don't have the same problem - for me, it's the buildup in my system because it's got such a long half-life.

I don't know much about this. It could be that a shorter acting opioid would work better - and not do this? Doctors worry a lot about dependence and addiction with some of the other opioids, but it may be worth a try for you.

When you say iron levels are normal, please let us know your serum ferritin level. If they didn't tell you, ask them.

Have you tried tramadol? I don't think it has the same effect on breathing.

Oh, what dose of methadone did he put you on?
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Re: Options? Feel I'm Out of Them

Postby rthom » Fri Feb 01, 2013 7:43 pm

Mastifftrouble---Sounds horrible for you right now, sorry to hear that. I have had some breathing trouble on the meds on occasion as well, for me it did not clear up without going off the medication. I have not tried methadone because of that--kind of surprised your dr isn't taking it more seriously, just be careful to do what is truely best for you, what-ever that may be. You know your body best. We are here to help, whenever you need.
P.s. Do you have a mastiff?
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Re: Options? Feel I'm Out of Them

Postby Mastifftrouble » Sun Feb 03, 2013 12:47 am

I was put on 2.5 mg of methadone which is half of a tablet. I am taking about half of that so a quarter tablet. It holds my RLS symptoms but I wake up feeling like I am being smothered. The anti - anxiety meds have helped some but I am still dealing with it. Just not a good feeling wondering when the next time that I can't breathe will happen. My doctor thinks once my body gets used to the meds this symptoms will go away. I am not so sure. I don't like the idea of taking more meds to help combat the side effects from other meds. I feel like I have brain fog all day.

The doctor felt methadone was good choice since my RLS affects me during the day as well as at night. My body tends to react to medicine differently than most. I am going to call him on Monday to see what other options are available. I appreciate the support from the forum because it is so hard to explain how this can make you feel. There is no history of this in my family.

My serrum ferritin levels tested out at 122. And saturation came in at 32.

PS. I do have a mastiff. I have had several of them. My current mastiff is a brindle who weighs in around 185. He is a very good barometer for how I am feeling. He knows when I am having pain or trouble breathing. He is quite a love.
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Re: Options? Feel I'm Out of Them

Postby rthom » Sun Feb 03, 2013 1:04 am

Kool--I have one too--they are very sensitive dogs--if my heartrate goes up ine alerts me, she was never taught it and for a while i had no idea what she wanted. What kind of mastiff do you have?
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Re: Options? Feel I'm Out of Them

Postby Mastifftrouble » Sun Feb 03, 2013 2:47 am

I have always had English mastiffs. The same thing happened with me. Mine would follow me around like velcro when I am feeling bad. He normally stays close by but when I feel out of sorts he sticks very close to me. It took me awhile to figure it out that he could tell something was wrong with me. Now my husband uses it to tell if I am having a bad time.

They are wonderful dogs. Mine is 11 years old now. How old is yours? What kind do you have?

I think I may talk to the doctor about the tramadol. When I take gabapentin and percocet I can get through the night with no problem. I don't like the percocet due to the dependency issue but it works well at night with the gabapentin. Tonight I am going to try the gabapentin and see if there is still some methadone left in my system. If the every other night would work then I would continue with it. I can see a difference in my breathing right about the 20 hour mark.

I keep the "Clinical Management of Restless Legs Syndrome" in my purse to use for reference for my primary care. I tried the Neupro patch as well and didn't get any relief. The specialist has told me that I will not be able to go back on dopamine agonists. Has anyone else every been told this?
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Re: Options? Feel I'm Out of Them

Postby rthom » Sun Feb 03, 2013 3:44 am

The english mastiffs have the best temperments. I have a buddy with one. Mine is a Boerbel (speling?), they are very hard to read and a very different temperment from the english's. These are jealous, possesive, etc.... They are not for family's or anyone that is not an advanced level handler. Mine is here because she's a rescue--I'm a behavoirist. People who usually breed rotweillers, dobermans etc. have started breeding these but are frequently unsuccessful because they have to return the borboel pups as they can't understand what they are doing and are getting into deep trouble with them. Frequently by the time they are 4 mnts old. They are serious dogs and this week I've been asked to help out because someone got one same reason it's 4 months old and the guy and his wife are already out-dogged. It's sad. Mine is with me almost all the time and at the dentist they use meds that increase my heart rate--she immediatly gets up and comes and looks in my face and won't leave my side till she understands I am ok or got her message. Very sensitive--all business and senitive--this can get folks into trouble if they take the wrong approach. I love my dog though and my wife loves the breed, much like you and yours I bet. :D :mrgreen:
Our girl is 9 now--never know t from her behavoir though.
Last edited by rthom on Sun Feb 03, 2013 7:18 am, edited 1 time in total.
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Re: Options? Feel I'm Out of Them

Postby rthom » Sun Feb 03, 2013 4:08 am

[I think I may talk to the doctor about the tramadol. When I take gabapentin and percocet I can get through the night with no problem. I don't like the percocet due to the dependency issue but it works well at night with the gabapentin. Tonight I am going to try the gabapentin and see if there is still some methadone left in my system. If the every other night would work then I would continue with it. I can see a difference in my breathing right about the 20 hour mark.

I keep the "Clinical Management of Restless Legs Syndrome" in my purse to use for reference for my primary care. I tried the Neupro patch as well and didn't get any relief. The specialist has told me that I will not be able to go back on dopamine agonists. Has anyone else every been told this?]

I was told by 2 health care providers that if you take the meds on time and only for the pain it was given to you for you will not get addicted. Your body will get used to having it but apparently going off of it is not as bad. I only know first hand that I've been on it for years and years and ..... and I frequently get frustrated with it not doing enough or I worry about dependancy so I just up and quit taking it (not a good idea), for me all that happens is for a day or two I have some loose stool, but nothing else--it's weird. But it seems for me at least that the dr and councellr that told me about the meds was right----could be a different result for others though, I'm sure that is the case. My thought is only this --if you need it long term you might want to carefully test it out, not just assume it's ok or a bad idea. I still test me and mine out--and for me there is a good likelyhood I'll be on it for life (unless they get a good WED med).

I get about the best result without feeling anything--sleepy, drained, hyper etc. from taking the percacet. I hate any changes in my body--felling wise--tiredness etc... As a teen I was a drag because I couldn't take the out of control feeling so I had no interest in rinkin or anything else. I remain that way to today. So for that reason I am on a full day every 4 hr percacet regime and have been for what seems to be forever.
I have taken it with gabapentin for nerve pain--found that in high doses was causing other problems--unsteady legs, doing kind of a light out thing--fall asleep standing up for 2 min etc.. but I was on 3200mg Oddly enough I still only got a few hrs sleep a night--even with that, percacet and a sleeping pill, anti-inflamatory and some other things sometimes (hydromorph, and hydromorph contin )----if my wife took even one of my pills she's be be out for days. :shock:

I am not on anything but the percacet now (oxycontin really). Couldn't handle the lack of a life--but my body felt better back then, though. What a choice to have to make eh? Body or mind. I thnk most folks that have to do that go back and forth a bit.


About the neupro I wonder if your Dr has figured you had augmented on the other dopamine drugs? If that was the case I have heard it here said that folks can't use them--they are just not effective anymore.
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Re: Options? Feel I'm Out of Them

Postby ViewsAskew » Sun Feb 03, 2013 7:02 am

I agree about tramadol. If you are using that amount of methadone and having it work, you likely don't need the power of methadone. Tramadol solves all my daily symptoms - it's just not enough for me at night. But, it might be for you (I tak 20 mg of methadone every 24 hours - 5 mg a couple hours after I get up, 5 mg around dinner, and ten mg about 2 hours before bed).

One of my favorite babysitting clients (as a teen, I sat for about 15 different families), had a huge mastiff named Flash. They also bred Welsh Corgis. The Corgis were cute, but Flash was great! He loved me :-).
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Re: Options? Feel I'm Out of Them

Postby badnights » Sun Feb 03, 2013 11:23 pm

I was surprised that your doctor jumped straight to methadone, skipping over all the medium-potency opioids and other, more-easily-accessed high-potentcy ones. But you do have Percocet, so perhaps you've tried other opioids as well?

Percocet, by the way, is terrible to take for RLS, not because it's any more addictive than any other opioid but because it contains acetominophen, which does nothing for your RLS but which your liver has to process anyway. Oxycodone by itself would be better, or the long-release version. Or hydromorphone long-release version, which I take.

As rhtom said, you're not likely to get addicted to an opioid if you only take it for your symptoms and never take it because it makes you feel good (which I never feel anyway, so it's not a temptation). Apparently, the rate of addiction in RLS patients on opioids is quite a bit lower than in the general population.

Re being unable to take DAs ever again, you said
I was on Requip for about 12 years which held the RLS at bay. Then side effects like extreme nausea started then I had to start increasing the dosage which increased the side effects. My PC prescribed ambien then anti -nausea meds to combat the side effects. I have been seeing an RLS specialist since November. I went off Requip and on to Mirapex to prepare for DAWS
. I can't tell from this if you were augmenting. Were you?

If you were, that would be reason enough not to take Requip ever again, but the door should still be open for Mirapex. You would probably eventually augment on Mirapex too, simply because about 70% of us eventually augment on the DAs, but it might possibly provide relief for a few years meantime.

fyi It is my understanding that DAWS is not to be confused with the increased severity of symptoms experienced by RLS patients when they withdrawal from dopamine agonists. DAWS (dopamine agonist withdrawal syndrome) is something else altogether, and has so far been identified only in patients who suffer impulse control disorder due to taking DAs. DAWS is a specific set of symptoms that include clinically significant distress or social/occupational dysfunction. (Other symptoms are anxiety, panic attacks, agoraphobia, depression, dysphoria, diaphoresis, fatigue, pain, orthostatic hypotension, and drug cravings.) No one has ever recovered from DAWS; so far, the only relief of symptoms has been had by re-introducing the DA drug (and consequently, the impulse control disorder). It is a horror show, compared to the temporarily increased RLS agony one experiences when DAs are stopped.

I also wanted to mention that some anti-nausea meds can make the RLS/WED symptoms worse, which is something to check if you ever take them again.

At least your doctor knows about RLS/WED treatment, sounds like you're in fairly good hands, but I would ask about different opioids if I were you. Tramadol might not be strong enough on its own, but in combination with Mirapex it might be good; that's what PB uses. I take hydromorph contin along with a mild sleeping aid, and sometimes Mirapex.
Beth
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Re: Options? Feel I'm Out of Them

Postby ViewsAskew » Mon Feb 04, 2013 1:36 am

Mastifftrouble wrote:
I keep the "Clinical Management of Restless Legs Syndrome" in my purse to use for reference for my primary care. I tried the Neupro patch as well and didn't get any relief. The specialist has told me that I will not be able to go back on dopamine agonists. Has anyone else every been told this?


Yes, many of us!

I have found that for me, this wasn't completely true. I just can't use them more than one day at a time and have to take at least 24 hours off before I do it again. I don't augment this way. Taken daily, I augment within a week, even if I haven't taken them in a long time. Then again, my ferritin has never hit close to 100, so maybe I would have fewer problems if it did.
Ann - Take what you need, leave the rest

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Re: Options? Feel I'm Out of Them

Postby EeFall » Mon Feb 04, 2013 10:49 am

I haven't read what the others have written yet but personally Methadone has been a lifesaver for me. I take Methadone 3 times a day, Lyrica twice a day, and Mirapex (its generic form) at night.

You might try Lyrica with a smaller dose of Methadone, it works for me. You will have a druggy drowsy feeling but I have been able to pretend it doesn't exist much of the time. I also take a blood pressure medicine that helps some too.

It sounds like you have it severe like I do. Without any medication I just don't sleep for days and pace for hours. I have actually had bruises on the bottom of my feet from pacing so much. Thankfully the medications have been working well enough for several months that I don't have that problem now. The medications are not perfect though and I average 3 or so hours of sleep a night. One thing about RLS/WED is that many of us can get by with less sleep for some reason and still be able to function.

I hope you find something that works for you. There are some things that I really avoid like aspartame, the sweetener in NutraSweet, even a little of it will void my medication and the RLS symptoms come back.
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Re: Options? Feel I'm Out of Them

Postby Mastifftrouble » Tue Feb 05, 2013 12:26 am

I was experiencing augmentation with requip. I was put on mirapex to "soften the landing" during the withdrawl of the DA. Thanks for the explaining the difference between DAWS and the withdrawl from DA. I went through the ten days of no medicine where I got about ten hours of sleep over the whole period. I paced the floor for a total of four hours each night. I did not have any impulsive issues from the meds.

I am very careful with what I eat or drink. I only have tea in the morning but I don't use any type of sweetner with it. I put a call into the doctor today. I hope to hear from him by Wednesday or Friday. I think maybe a combo of meds will work - similar to the gabapentin and percocet mixture. Most of the time it works well. I would be more comfortable with an opiate that is not so strong. Methadone is the only opiate that I have been on. The percocet was something the doctor said I could use during the interim until I found something that worked well.

Thanks so much for the support.
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Re: Options? Feel I'm Out of Them

Postby rthom » Tue Feb 05, 2013 12:34 am

:thumbup: :thumbup:
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Re: Options? Feel I'm Out of Them

Postby ViewsAskew » Tue Feb 05, 2013 2:47 am

Being put on Mirapex to soften the landing after augmentation - not a good choice in my opinion. Yes, they say you can try a second DA if you've failed one, but the key here is how bad you failed it - a bit or a lot. When a bit - such as it's starting an hour earlier or it is a bit worse, then some doctors feel it's OK to try the second one.

But, when it's a lot most specialists agree that another DA right away is not a good option. Everyone I know who has done that (and a lot of doctors have us do that) has had horrific problems with the second DA, too.
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