Doety, I've only been around here for a few months. Came here looking for someone else using a TENS Unit but it seems I'm going it alone. Mirapex helped me for a while but then became my nightmare. (Did you see my video of what augmentation was like for me?)
Taking a med that causes central sleep apnea would have to be a very last resort for me. You said you use oxygen, but are you on a ventilator type CPAP that breathes for you if you don't? That gets pretty complicated, not to mention a hassle, as you indicate. I can't begin to know what might work for anyone else, I can only say that the TENS has been a godsend for me. I dreaded weaning off the meds because I knew it would be rough for a while, but I really had only a couple weeks of misery before figuring out how to best utilize the TENS. My CPAP is data capable and I have software that gives me detailed information about my nights and the effectiveness of my CPAP treatment. Earlier today I compared my usage in the two months before going off Requip and starting the TENS and the two months since. If I'm in bed, my CPAP is on, so it is also a good indicator of if my legs were acting up, cause I'd be out of bed. Before TENS I was averaging 2 to 4 hours of sleep (if any) on most nights. I now average 7-9, and have only had one night less than 5 hours in several weeks. I almost feel guilty saying that in the presence of those who are still suffering so badly. I do hope you find what works for you to get some relief. Wondering if anyone else on here who takes Methadone has developed central sleep apnea... hmmmm.
Starting Klonopin
-
sleepdancer
- Posts: 104
- Joined: Wed Dec 08, 2010 8:09 am
Figuring out what works
My SleepDancing Video link http://www.youtube.com/watch?v=jE7WA_5c73c
-
ViewsAskew
- Moderator
- Posts: 16583
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
We've quite a few methadone users - none have central apnea that I know of.
It sux that it happened to Doety. Not sure it happens enough to absolutely preclude its use, however. It certainly should be a concern of physicians that prescribe it!
It sux that it happened to Doety. Not sure it happens enough to absolutely preclude its use, however. It certainly should be a concern of physicians that prescribe 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.
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.
-
sleepdancer
- Posts: 104
- Joined: Wed Dec 08, 2010 8:09 am
Methadone and Central Apnea
ViewsAskew - I guess I should have asked how many Methadone users have had a sleep study to be sure it hasn't caused central apnea? I mean, if someone still feels like crap, maybe that's a contributor, and in those cases, increasing the dose thinking the RLS is the issue would perpetuate the problem. I remember someone on the CPAP forum who was on Methadone and had developed pretty severe central apnea. Good discussion to have with the prescribing doctor.
My SleepDancing Video link http://www.youtube.com/watch?v=jE7WA_5c73c
-
ViewsAskew
- Moderator
- Posts: 16583
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
I wonder if already having apnea predisposes a person to worse problems.
I have had a study after starting the methadone - no problems.
Dr Buchfuhrer, who is a pulmonologist and got into sleep disorders because he treated apnea, is a proponent of methadone. I'd think that if it was a common problem that he'd be aware of it. Not necessarily so, but he seems the conscientious sort and someone who's well read in all sleep study and lung issue literature. Easily my relationship with him as an RLS advocate could be coloring my perceptions, however.
I have had a study after starting the methadone - no problems.
Dr Buchfuhrer, who is a pulmonologist and got into sleep disorders because he treated apnea, is a proponent of methadone. I'd think that if it was a common problem that he'd be aware of it. Not necessarily so, but he seems the conscientious sort and someone who's well read in all sleep study and lung issue literature. Easily my relationship with him as an RLS advocate could be coloring my perceptions, however.
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.
docs
The doc who did a sleep study on me called me in some agitation, and said "You have central apnea. You're not even trying to breathe." When I asked why, he said "Methadone causes it." I looked up Methadone somewhere (can't find it now, of course) and it said that could happen.
Now when I get on Google, I see that it's "rare," and "uncommon." Several places say it depresses breathing -- and since I already had sleep apnea and was using a CPAP, I think it was a bad idea to take it in the first place. Obviously it's not as common as I first thought.
Here's a little bit of the entry from the Mayo Clinic:
Unlike obstructive sleep apnea, in which you can't breathe normally because of upper airway obstruction, central sleep apnea occurs when your brain doesn't send proper signals to the muscles that control your breathing. Central sleep apnea is less common, accounting for less than 5 percent of sleep apneas.
Central sleep apnea may occur as a result of other conditions, such as heart failure and stroke. Sleeping at a high altitude also may cause central sleep apnea.
Treatments for central sleep apnea may involve using a device to keep your upper airway open or using supplemental oxygen.
OKAY. I should researched a lot more. I live in Denver! So I have the high altitude part. This had me in a panic -- and I think rightly so, because some entries talk about "life-threatening," and heart failure. My father had severe apnea, back when people thought it was funny and he died at 57.
Since the same doc who prescribed Methadone told me I had the central apnea, and apparently didn't take into account our altitude or the fact that I was already using a CPAP, I think I need to find somebody who knows something. I know (yesterday!) I said I would stop going to docs for RLS, this seems to call for some action. It's scary. The docs I've seen don't put everything together and I want someone to take this seriously.
Maybe I'll have to move back to the South.
Now when I get on Google, I see that it's "rare," and "uncommon." Several places say it depresses breathing -- and since I already had sleep apnea and was using a CPAP, I think it was a bad idea to take it in the first place. Obviously it's not as common as I first thought.
Here's a little bit of the entry from the Mayo Clinic:
Unlike obstructive sleep apnea, in which you can't breathe normally because of upper airway obstruction, central sleep apnea occurs when your brain doesn't send proper signals to the muscles that control your breathing. Central sleep apnea is less common, accounting for less than 5 percent of sleep apneas.
Central sleep apnea may occur as a result of other conditions, such as heart failure and stroke. Sleeping at a high altitude also may cause central sleep apnea.
Treatments for central sleep apnea may involve using a device to keep your upper airway open or using supplemental oxygen.
OKAY. I should researched a lot more. I live in Denver! So I have the high altitude part. This had me in a panic -- and I think rightly so, because some entries talk about "life-threatening," and heart failure. My father had severe apnea, back when people thought it was funny and he died at 57.
Since the same doc who prescribed Methadone told me I had the central apnea, and apparently didn't take into account our altitude or the fact that I was already using a CPAP, I think I need to find somebody who knows something. I know (yesterday!) I said I would stop going to docs for RLS, this seems to call for some action. It's scary. The docs I've seen don't put everything together and I want someone to take this seriously.
Maybe I'll have to move back to the South.
-
SquirmingSusan
- Posts: 3028
- Joined: Sun Nov 12, 2006 4:08 am
- Location: Minnesota
- Contact:
What's weird is that I had a sleep study before I was taking methadone, and it showed mild apnea, and almost all of it was central apnea. Then I had a sleep study just over a year ago, after I had been taking methadone a couple years, and I had mild to moderate OSA, but no CA. So in my case, it definitely doesn't cause CA. But each of us is different.
Doety, I'm wondering if you could get a Pulse Oximeter with an alarm, like they use in the hospital after surgery. So that if your O2 drops to a dangerous level, the alarm goes off and wakes you up. Then you could stop worrying about it. And the odds are that it doesn't drop very low as often as you imagine.
Doety, I'm wondering if you could get a Pulse Oximeter with an alarm, like they use in the hospital after surgery. So that if your O2 drops to a dangerous level, the alarm goes off and wakes you up. Then you could stop worrying about it. And the odds are that it doesn't drop very low as often as you imagine.
Susan
I have a question and would appreciate any one responding to it. I have only been with my nuerologist twice now. My FP DR. said she had done what she could for me and i needed a specialist. She did the Requip, Mirapex, Ativan and Nuerontin thing. When I left her I was taking Nuerontin3 times a day and that was it. The first time I saw him, he put me on Tregretol (Carbamazepine)3 times a day and upped my Nuerontin to 4 times a day. I had horrible side efffects imediately on the Tegretol which I posted in another thread. Just to say my head and fae where numb. I went off that immediately and just stayed with the Nuerontin until I saw him 2 weeks later. He then upped my nuerontin to 8 a day, 2400mg and put me on Klonopin. He had aslo given me a nerve test and asked me to do a Gluose Tolerence test to rule things out. Everything was fine. He was just a tiny but conerned about one of the results in the Gluose test so sent me to an arthritis Dr. Now during all this time I was on the Nuerontin I notied my ankles slowly swelling. Now they are huge and the Arthritis Dr saw this and alarms went off. He said my whole body appeared bloated and dropped me to 2 Nuerontin a day since that is a side effect. I called and let my Dr know hoping he would giving me something in its place but he decided to sound like a 2 year old and told me to call him and ask him what he suggest I be giving since he srewed up his plans. My Nuerologist recommended and made the appoinment so I felt he should do that. I am now probably leaving him. That I couldn't take. The other thing is, this also being where I really need to know if others did this and how to get Dr to go along wiith them. Before the klonopin and Nuerontin I got no releif. I self medicated on pain pills I had from surgery or falls. I would even cut them in half to get them to last plus it let me know if they would work as a weaker mg and they ususlly did unless my RLS was kicking. The issue is I was honest with him and told him I did this just to get releif and being a part of this organization knew it was a possible treatment. I let him know it did work and could not explain the relief I had after feeling I was loosing my mind. He just ignores me and goes his way. The Arthristis Dr understood me more. I wish I could have him. Any way there it is. Tomrrow I am calling my Nuerologist to see if I can get in right away and if not go to a Patient First here. My ankles are so swollen the veins look like they are breaking and someone needs to see them. I told him about them yesterday and didn't seem to care.
sorry
Hi:
I'm so sorry you're in the middle of what sounds like a terrible time.
Know that this is just my opinion, of course. But I think you're doing what almost all of us have done -- we hope a doctor knows more than we do and we rely on them. We have this awful problem -- that science knows very little about. Many docs start throwing drugs at it. They don't like to be wrong and they don't like to be presented with a "case" they can't solve.
The doc increases this or stops that or eliminates something else -- it's a guess, a shot in the dark. Most of the time I think that if we're not bleeding, doctors don't know what to do. I know that's harsh and I don't blame them so much -- it's just that RLS hasn't been "solved" yet. We've made huge progress, and we do have some drugs that can help. But as far as I can tell, there's no definitive solution. Even when we find a drug that helps, it often helps for just a while, then we're stuck with searching around.
I don't say this to depress you (more), but just to say I think you need to stop thinking a doctor will solve this. In your case, it seems they've just made it worse. Perhaps your best course is to take many deep breaths and get on the Internet and research as hard as you can. Write down your symptoms, the drugs you've taken, the effect of the drugs, get all the facts in front of you. Be sure to keep a list of what you've done and the docs that have told you what to do.
A first stop might be to put your drugs in a sack and take them to the most reputable phamacist you can find. They're often a wonderful resource because they're educated in what interacts with what.
When I'm in pain, I start to lose my sense of what's rational. I get my grown daughter to help me think about things. Do you have anyone you could use like that? Please know that you're not crazy -- especially when we're alone with all the bizarre symptoms we can experience, we start thinking we're losing it. You are not.
Although I know lots of people on this site take Neurontin and feel it helps them a lot, several of us have found that it does awful things to us -- you might be one of those people. That's one reason why it's important to start keeping a diary of all this, in case you haven't.
Sounds like you've found that something like Vicodin is helping you. That's a valid drug to use; many people on this site will attest to that. Once you've done some research, you may conclude that a drug like that would be your best bet.
I know you're scared and I would be too -- looking at the swelling would be scary. I'm hoping that some readers on this site can suggest something to help you right away. By the way, where do you live? If you don't mind, let us know and maybe someone knows a good doctor in your area who's familiar with RLS -- but arm yourself with all the info you can.
Please let us know how you are. Sending you good thoughts and hope you can find a solution quickly.
I'm so sorry you're in the middle of what sounds like a terrible time.
Know that this is just my opinion, of course. But I think you're doing what almost all of us have done -- we hope a doctor knows more than we do and we rely on them. We have this awful problem -- that science knows very little about. Many docs start throwing drugs at it. They don't like to be wrong and they don't like to be presented with a "case" they can't solve.
The doc increases this or stops that or eliminates something else -- it's a guess, a shot in the dark. Most of the time I think that if we're not bleeding, doctors don't know what to do. I know that's harsh and I don't blame them so much -- it's just that RLS hasn't been "solved" yet. We've made huge progress, and we do have some drugs that can help. But as far as I can tell, there's no definitive solution. Even when we find a drug that helps, it often helps for just a while, then we're stuck with searching around.
I don't say this to depress you (more), but just to say I think you need to stop thinking a doctor will solve this. In your case, it seems they've just made it worse. Perhaps your best course is to take many deep breaths and get on the Internet and research as hard as you can. Write down your symptoms, the drugs you've taken, the effect of the drugs, get all the facts in front of you. Be sure to keep a list of what you've done and the docs that have told you what to do.
A first stop might be to put your drugs in a sack and take them to the most reputable phamacist you can find. They're often a wonderful resource because they're educated in what interacts with what.
When I'm in pain, I start to lose my sense of what's rational. I get my grown daughter to help me think about things. Do you have anyone you could use like that? Please know that you're not crazy -- especially when we're alone with all the bizarre symptoms we can experience, we start thinking we're losing it. You are not.
Although I know lots of people on this site take Neurontin and feel it helps them a lot, several of us have found that it does awful things to us -- you might be one of those people. That's one reason why it's important to start keeping a diary of all this, in case you haven't.
Sounds like you've found that something like Vicodin is helping you. That's a valid drug to use; many people on this site will attest to that. Once you've done some research, you may conclude that a drug like that would be your best bet.
I know you're scared and I would be too -- looking at the swelling would be scary. I'm hoping that some readers on this site can suggest something to help you right away. By the way, where do you live? If you don't mind, let us know and maybe someone knows a good doctor in your area who's familiar with RLS -- but arm yourself with all the info you can.
Please let us know how you are. Sending you good thoughts and hope you can find a solution quickly.
-
badnights
- Moderator
- Posts: 6259
- Joined: Tue Mar 10, 2009 4:20 pm
- Location: Northwest Territories, Canada
I hope you can get back in to see your neurologist as soon as possible. The chances of randomly hitting a doctor at Patient First who knows how to treat refractory RLS is not that great.
If you have access to a printer, print off the document in this link:
http://www.rls.org/Document.Doc?&id=2112 (It's the RLS Foundation medical bulletin). Take a highlighter or pen and circle the bottom part of Table 5 (Refractory RLS). Also on page 6, highlight the four points on dealing with refractory RLS.
You can tell your neurologist that someone told you about this paper, and give it to him, and ask if he can get back to you and let you know what he thinks of it.
Probably he will have gotten over being miffed at the arthritis doctor's interference. Really, most doctors do want to help you, but they get so jaded... It's too bad we have to be the patient ones, when it's our lives that are falling apart and we can't think straight anymore.
At some point, ask him why your painkillers stopped the RLS symptoms. No one knows the answer (yet), but he should be thinking about these things.
I hope you get in to see him. Keep posting here, whatever happens.
beth
If you have access to a printer, print off the document in this link:
http://www.rls.org/Document.Doc?&id=2112 (It's the RLS Foundation medical bulletin). Take a highlighter or pen and circle the bottom part of Table 5 (Refractory RLS). Also on page 6, highlight the four points on dealing with refractory RLS.
You can tell your neurologist that someone told you about this paper, and give it to him, and ask if he can get back to you and let you know what he thinks of it.
Probably he will have gotten over being miffed at the arthritis doctor's interference. Really, most doctors do want to help you, but they get so jaded... It's too bad we have to be the patient ones, when it's our lives that are falling apart and we can't think straight anymore.
At some point, ask him why your painkillers stopped the RLS symptoms. No one knows the answer (yet), but he should be thinking about these things.
I hope you get in to see him. Keep posting here, whatever happens.
beth
Doety I have researched RLS more than I can think. I am frustrated with a Dr. who I suspet knows nothing about this. I can respect that if he tells me that and then we can work together. When I wrote before I was mad and shocked at how he reacted to another Dr. noticeing a problem and then realizing I was on too high a dosage and cut me back. It would have been nice for the 2 of them to talk but apparently mine is sulking and wants me to be the go between. He said he knew I was swelling but it wasn't an issue. Neither apparently was a drug that litterly numbed my head and affeted my thinking. That I found is also a common side effect of that particular drug. I am in the process of getting another Dr. My pharmacy knows my drugs that I used plus every Dr. I am seeing lately want my whole drug history and I have to bring my current ones in for them to check out.
What I want to do is be prescribed something like perkoset or Nucenta. Nuenta worked the best for me. I have even confessed to my Drs. that I have taken those in desperate times and had been given tremendous releif that nothing else gives me. How to get a Dr to prescribe one of those though. I feel like I am asking him to break the law and the look I get gives me the same feeling. I am not scared of this condition, disease or what ever they call it right now. I know this is new to them only because the medical community thought it was all in our heads. I am mad that the Drs. don't want to listen to the ones who have it. Maybe they would learn something. After all WE LIVE with it.
What I want to do is be prescribed something like perkoset or Nucenta. Nuenta worked the best for me. I have even confessed to my Drs. that I have taken those in desperate times and had been given tremendous releif that nothing else gives me. How to get a Dr to prescribe one of those though. I feel like I am asking him to break the law and the look I get gives me the same feeling. I am not scared of this condition, disease or what ever they call it right now. I know this is new to them only because the medical community thought it was all in our heads. I am mad that the Drs. don't want to listen to the ones who have it. Maybe they would learn something. After all WE LIVE with it.
None of us should feel like we have to use words like "confessing." You have found something that helps you. Maybe nothing else can. You should have access to that remedy. I sure hope you can find a doctor who's reasonable, one who listens to you and doesn't make you jump through psychological hoops to get what you need.