Hi, I'm new here but not to RLS. It had pretty much subsided for a while but then I became severely depressed due to some unfortunate circumstances in my life, and I had to go on an SSRI. I knew from past experience that these drugs exacerbate my RLS and this one is no exception. I've complained about it several times to my psychiatrist but he just gives me a blank look, I don't think he has a clue what to do about it. I am on Wellbutrin, Celexa, and a low dose of Ritalin. I also take Ambien every night and that used to be enough to control the RLS, but once I started Celexa the Ambien has no effect and the RLS is as bad as it's ever been in my life. How does one go about finding a doctor who is knowledgeable about RLS? What specialty is most likely to have experience with it, and how do you find out if they do before taking the time to go in, I can't take much more time off work due to dr. appts. I'm located in Pittsburgh, can anyone recommend a good doctor?
I hate the thought of adding another drug, but I guess if I dropped the Ambien and replaced it with something else it might not be so bad. I took Mirapex once a long time ago and it made me unbelievable tired during the day. Any suggestions? Thanks in advance.
What kind of doctor? How to find a good one?
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FormerMermaid
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Polar Bear
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What about emailing Dr B. He answers questions very quickly. His contact is somno@verizon.net and he has questions/answers at rls.org.
He is based at the Mayo Clinic. You could tell him what meds you are on and your rls and other medical history and see what he says.
The when you return to your psychiatrist you would have the emailed advices of an rls expert - and you could also print out and take with you a copy of the Mayo Clinic Algorithm which provides guidelines for the treatment of rls. There are several links on posts on this site to the algorithm. Zach has a link.
He is based at the Mayo Clinic. You could tell him what meds you are on and your rls and other medical history and see what he says.
The when you return to your psychiatrist you would have the emailed advices of an rls expert - and you could also print out and take with you a copy of the Mayo Clinic Algorithm which provides guidelines for the treatment of rls. There are several links on posts on this site to the algorithm. Zach has a link.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation
While contacting Dr. B and Printing out the Algorithm are certainly going to help you get some answers, I'm not sure what your psych can really do about it..
I know they can prescribe a wide range of drugs, but RLS is a physical condition, not a mental disease or defect, I feel it should be treated by a physician.
Unfortunately finding one can be a long and hard battle.. There is no one specialty people can always go to for great RLS relief, as being an expert in treating and understanding RLS is sometimes a profession in itself.. You could go to a sleep specialist who is clueless, a neurologist who knows a few things but gives you limited medication choices, or a general practitioner who either doesn't believe it exists, doesn't believe you / thinks it is in your head (and sends you back to the psych) - will throw every test in the book at you to try and diagnose anything else wrong but RLS, and attribute all your problems to THAT, or worse yet call you a drug seeker and send you home in tears...
And then you might get lucky and find a doctor in any of those fields who has heard of RLS, maybe knows a little something, but wants to help and is always willing to read stuff you bring in, like The Mayo Algorithm so the can try and help you..
The first thing to do is print out a copy of the algorithm from this link.
http://www.mayoclinicproceedings.com/co ... l.pdf+html
Next you gotta start calling doctors and ask specific questions, have they dealt with RLS before, are they willing to take on an RLS case, are they willing to base treatment off ideas they can read in the Mayo Algorithm, etc.. Always control the initial appointment.. You are there to see him, he is the one being paid to take care of you, always be assertive.. If they told you they would go over the Mayo Algorithm with you and then try to give you the run around at the appointment, sternly remind them that you were assured it would be part of your treatment plan, and you are not going to pay them $90 (or whatever the visit cost) to hear one thing on the phone and then another when you come in under false pretenses, etc..
Don't mean to bring you down, but that is possibly the kind of fight you're in for.. Don't let them give you anything that makes your RLS works, including other anti-depressants, and don't let them try to shove Requip or Mirapex down your throat, make sure you tell them it made you intolerably sleepy in the daytime, etc..
There are plenty of meds, but seeing as you are taking anti-depressants and show no signs of stopping, you are going to find getting relief from meds to be difficult, even more so if you have to wait out lesser drugs trials that probably won't work, while trying them to demonstrate that, because they will do anything but give you an opiate (as a last result or never ever)
I know they can prescribe a wide range of drugs, but RLS is a physical condition, not a mental disease or defect, I feel it should be treated by a physician.
Unfortunately finding one can be a long and hard battle.. There is no one specialty people can always go to for great RLS relief, as being an expert in treating and understanding RLS is sometimes a profession in itself.. You could go to a sleep specialist who is clueless, a neurologist who knows a few things but gives you limited medication choices, or a general practitioner who either doesn't believe it exists, doesn't believe you / thinks it is in your head (and sends you back to the psych) - will throw every test in the book at you to try and diagnose anything else wrong but RLS, and attribute all your problems to THAT, or worse yet call you a drug seeker and send you home in tears...
And then you might get lucky and find a doctor in any of those fields who has heard of RLS, maybe knows a little something, but wants to help and is always willing to read stuff you bring in, like The Mayo Algorithm so the can try and help you..
The first thing to do is print out a copy of the algorithm from this link.
http://www.mayoclinicproceedings.com/co ... l.pdf+html
Next you gotta start calling doctors and ask specific questions, have they dealt with RLS before, are they willing to take on an RLS case, are they willing to base treatment off ideas they can read in the Mayo Algorithm, etc.. Always control the initial appointment.. You are there to see him, he is the one being paid to take care of you, always be assertive.. If they told you they would go over the Mayo Algorithm with you and then try to give you the run around at the appointment, sternly remind them that you were assured it would be part of your treatment plan, and you are not going to pay them $90 (or whatever the visit cost) to hear one thing on the phone and then another when you come in under false pretenses, etc..
Don't mean to bring you down, but that is possibly the kind of fight you're in for.. Don't let them give you anything that makes your RLS works, including other anti-depressants, and don't let them try to shove Requip or Mirapex down your throat, make sure you tell them it made you intolerably sleepy in the daytime, etc..
There are plenty of meds, but seeing as you are taking anti-depressants and show no signs of stopping, you are going to find getting relief from meds to be difficult, even more so if you have to wait out lesser drugs trials that probably won't work, while trying them to demonstrate that, because they will do anything but give you an opiate (as a last result or never ever)
Zach, I cannot get that link to work at all for me. Every time I try it gives me an error and shuts down my browser. Do you have it saved to your HD as a pdf. ? If so could you email it to joel.leiby@gmail.com ?
DX: GAD, Panic Disorder, RLS
RX: Lexapro (30mg daily), Mirapex (.25mg daily), Xanax (.5mg as needed)
RX: Lexapro (30mg daily), Mirapex (.25mg daily), Xanax (.5mg as needed)
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SquirmingSusan
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Wow, I don't really know Mermaid. A psychiatrist can often be a good choice for treating RLS because they often have some cross-training with neurological issues. That and they're often more willing to prescribe controlled meds than other doctors.
Getting him a copy of the Algorithm might be a good start, if he'll actually read it. I don't know if you need to stay on the SSRI class of antidepressants. If you do, you may be able to "shop around" and try others in that class. Sometimes one will cause worsened RLS while another might not. It can vary so much.
If you can switch to another class of antidepressants, that might be even better. I'm taking one that's related to Strattera, and I was able to replace Wellbutrin, Effexor, and Provigil with it; and now it's knocking down my RLS to the point where I've cut my methadone by more than half. The one I'm taking I need to order from Europe and pay for out of pocket, but it works identically to Strattera (which interacts with methadone).
ADD meds in general can work well as antidepressants; maybe you could increase your dose a bit, and cut the Celexa? I don't know if that would work for you, though.
Anticonvulsants can also have an antidepressant effect, and they can help with RLS as well. And a psychiatrist is going to know the most about that and be most able to figure out another way to treat the depression without SSRIs.
Can you tell your psych that you want to get off of SSRIs and figure out a different way to treat your depression? That would be a start, and a bonus might be that your RLS would be less, and maybe the other meds might actually help.
As for finding a doctor who knows all about RLS - it's not likely to happen. We all kind of struggle through with doctors who know something about RLS, and then try to educate them.
I wish you the best with it.
Getting him a copy of the Algorithm might be a good start, if he'll actually read it. I don't know if you need to stay on the SSRI class of antidepressants. If you do, you may be able to "shop around" and try others in that class. Sometimes one will cause worsened RLS while another might not. It can vary so much.
If you can switch to another class of antidepressants, that might be even better. I'm taking one that's related to Strattera, and I was able to replace Wellbutrin, Effexor, and Provigil with it; and now it's knocking down my RLS to the point where I've cut my methadone by more than half. The one I'm taking I need to order from Europe and pay for out of pocket, but it works identically to Strattera (which interacts with methadone).
ADD meds in general can work well as antidepressants; maybe you could increase your dose a bit, and cut the Celexa? I don't know if that would work for you, though.
Anticonvulsants can also have an antidepressant effect, and they can help with RLS as well. And a psychiatrist is going to know the most about that and be most able to figure out another way to treat the depression without SSRIs.
Can you tell your psych that you want to get off of SSRIs and figure out a different way to treat your depression? That would be a start, and a bonus might be that your RLS would be less, and maybe the other meds might actually help.
As for finding a doctor who knows all about RLS - it's not likely to happen. We all kind of struggle through with doctors who know something about RLS, and then try to educate them.
I wish you the best with it.
Susan
Mermaid--
My sleep doctor is board certified in Sleep Medicine, Neurology, and Psychiatry. I think this trifecta has been very helpful to him in understanding the bigger picture for his patients. He's certainly been able to help me, and not just with RLS. I would recommend trying to get as close as possible to this sort of training, if you can find someone like that.
My sleep doctor is board certified in Sleep Medicine, Neurology, and Psychiatry. I think this trifecta has been very helpful to him in understanding the bigger picture for his patients. He's certainly been able to help me, and not just with RLS. I would recommend trying to get as close as possible to this sort of training, if you can find someone like that.
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.
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ViewsAskew
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Speaking of this, I had an angry brainstorm yesterday while walking home from the doc's office.
Why couldn't we undertake a group initiative to fax the sleep and neuro docs in our areas with a form that asked about their experience with RLS, if they are familiar with the algorithm, if they are comfortable with drugs used to treat RLS and handling complex drug interactions, etc. We would tell them that we were from a local RLS support group.
We could compile the research and host it somewhere, turn it over to our local RLS support group, etc.
It would be work...but it's work that some of us could do at night when our RLS was bothering us: looking up docs, finding phone numbers, etc.
Why couldn't we undertake a group initiative to fax the sleep and neuro docs in our areas with a form that asked about their experience with RLS, if they are familiar with the algorithm, if they are comfortable with drugs used to treat RLS and handling complex drug interactions, etc. We would tell them that we were from a local RLS support group.
We could compile the research and host it somewhere, turn it over to our local RLS support group, etc.
It would be work...but it's work that some of us could do at night when our RLS was bothering us: looking up docs, finding phone numbers, etc.
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.
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SquirmingSusan
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ViewsAskew
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Great! The more the better.
While walking, here was what I thought of. I imagine that we need to work on it - adding, changing, etc. - as it was just random thoughts out of a desire to get the help I need.
First, who is our target audience? neuros, sleep docs, and???? anyone else?
I was thinking of something composed of several parts.
First, an intro that establishes our credibility, explains - as short as possible - what we are trying to accomplish, how they can help, and ask for their help. A call to action if you will. It also needs to state where to return and how quickly. If we were on the ball, we'd have an Internet option through Survey Monkey or similar.
Then the survey itself. This was the sticky part for me. I want to know, for example, if they will prescribe opioids. But, that's probably not what we should ask directly. I think we may be able to get there indirectly by asking questions in a certain way. We want to get at their experience, for example:
how long they have been treating it,
how many patients they have treated (such as less than ten, 10-50, 50-100, over 100),
the solutions they provide/believe in/subscribe
Maybe all of these can simply be in a checklist. If nothing else, reading that they are not doing some of the things that other doctors are doing will spur them to learn more.
What else? Some possibilities include:
Knowledge level/comfort regarding:
-where patient is on multiple drugs
-when patient doesn't respond to first-line dopamine agonists
-augmentation
-Mayo Clinic Algorithm for RLS Treatment
As I am typing this, I am concerned that we might scare them somehow, or alienate them. I think it's important that we write it in such a way that it's easy to fill out, it doesn't take a lot of time, and they feel that their answers will benefit them in terms of new patients. So, we can't grill them about whether they do things we'd equate with being uninformed. I guess I'm saying language needs to be neutral.
While walking, here was what I thought of. I imagine that we need to work on it - adding, changing, etc. - as it was just random thoughts out of a desire to get the help I need.
First, who is our target audience? neuros, sleep docs, and???? anyone else?
I was thinking of something composed of several parts.
First, an intro that establishes our credibility, explains - as short as possible - what we are trying to accomplish, how they can help, and ask for their help. A call to action if you will. It also needs to state where to return and how quickly. If we were on the ball, we'd have an Internet option through Survey Monkey or similar.
Then the survey itself. This was the sticky part for me. I want to know, for example, if they will prescribe opioids. But, that's probably not what we should ask directly. I think we may be able to get there indirectly by asking questions in a certain way. We want to get at their experience, for example:
how long they have been treating it,
how many patients they have treated (such as less than ten, 10-50, 50-100, over 100),
the solutions they provide/believe in/subscribe
Maybe all of these can simply be in a checklist. If nothing else, reading that they are not doing some of the things that other doctors are doing will spur them to learn more.
What else? Some possibilities include:
Knowledge level/comfort regarding:
-where patient is on multiple drugs
-when patient doesn't respond to first-line dopamine agonists
-augmentation
-Mayo Clinic Algorithm for RLS Treatment
As I am typing this, I am concerned that we might scare them somehow, or alienate them. I think it's important that we write it in such a way that it's easy to fill out, it doesn't take a lot of time, and they feel that their answers will benefit them in terms of new patients. So, we can't grill them about whether they do things we'd equate with being uninformed. I guess I'm saying language needs to be neutral.
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.
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FormerMermaid
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Thank you all so much for your insightful comments, I really appreciate it. It helps to talk to people who understand. Polar Bear, I took your advice and wrote to Dr. B. He has already answered me, I hope it's appropriate to share the email with the board:
Hello Dr. B, Thank you for taking a moment to read my email, I’m sure you are very busy. I am taking several medications for major depressive disorder, and as a result I am suffering from RLS, it is pretty severe and Ambien does nothing to help me get some sleep. My psychiatrist seems completely unfamiliar with this problem and has not offered any solutions. I am not in a position right now to discontinue my meds. I am on Celexa, Wellbutrin, and Buspar, also a low dose of Ritalin as needed due to daytime fatigue because of the RLS. I believe the Celexa is the culprit but if I stop it the depression returns full force. My GP is not much help either, years ago he prescribed Mirapex but I couldn’t stay awake during the day on it. He will definitely not give me anything potentially habit-forming, such as benzos, opioids, etc. even though I have never had an addiction problem. He just doesn’t prescribe those meds. I have had RLS on and off since I was 17 (I’m 49 now). I also have a long history of depression and dysthymia, I need an SSRI but they all cause RLS. Any suggestions?
When an antidepressant drug like Celexa is needed to keep severe depression at bay, we typically do not try to stop it but rather just treat around this drug. Even though Mirapex caused sedation, it may still be worth a trial of Requip to see if that is better tolerated.
If the Requip does not work, then the opioids (or tramadol) or anticonvulsants (gabapentin, Lyrica) are next on the list. If your current doctors will not prescribe these drugs, you should see a specialist (neurologist, sleep specialist) who will.
So now I guess I have to find one. I found a sleep disorder clinic at our local university hospital but it seems like all the doctors are certified in Pulmonology...here's a link if you're interested:
http://sleepmedicinecenter.upmc.com/Default.htm
I think I'll give them a call. Thanks again for the advice and support. I'm sure I'll be back here soon, this place is a valuable resource.
Hello Dr. B, Thank you for taking a moment to read my email, I’m sure you are very busy. I am taking several medications for major depressive disorder, and as a result I am suffering from RLS, it is pretty severe and Ambien does nothing to help me get some sleep. My psychiatrist seems completely unfamiliar with this problem and has not offered any solutions. I am not in a position right now to discontinue my meds. I am on Celexa, Wellbutrin, and Buspar, also a low dose of Ritalin as needed due to daytime fatigue because of the RLS. I believe the Celexa is the culprit but if I stop it the depression returns full force. My GP is not much help either, years ago he prescribed Mirapex but I couldn’t stay awake during the day on it. He will definitely not give me anything potentially habit-forming, such as benzos, opioids, etc. even though I have never had an addiction problem. He just doesn’t prescribe those meds. I have had RLS on and off since I was 17 (I’m 49 now). I also have a long history of depression and dysthymia, I need an SSRI but they all cause RLS. Any suggestions?
When an antidepressant drug like Celexa is needed to keep severe depression at bay, we typically do not try to stop it but rather just treat around this drug. Even though Mirapex caused sedation, it may still be worth a trial of Requip to see if that is better tolerated.
If the Requip does not work, then the opioids (or tramadol) or anticonvulsants (gabapentin, Lyrica) are next on the list. If your current doctors will not prescribe these drugs, you should see a specialist (neurologist, sleep specialist) who will.
So now I guess I have to find one. I found a sleep disorder clinic at our local university hospital but it seems like all the doctors are certified in Pulmonology...here's a link if you're interested:
http://sleepmedicinecenter.upmc.com/Default.htm
I think I'll give them a call. Thanks again for the advice and support. I'm sure I'll be back here soon, this place is a valuable resource.
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SquirmingSusan
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Most sleep specialist are pulmonologists, but sometime you can find ones who are neurologists. I know in my area there is one sleep clinic that is divided into two specialities - pulmonary and neurology. It's not always necessary to find a neuro, though. Some pulmonary docs can be quite knowledgeable and willing to treat RLS. It's a good idea when you call to schedule an appointment, to ask if there is a doctor who specializes in RLS.
Best wishes with it.
Best wishes with it.
Susan
I'm running with Ann's idea and making up a draft document, of what this survey might look like.
However I am at a loss of how to ask about opiates as well.. Perhaps we should condult Dr. B and some other doctors we know.. Being emotionally detached from how a doctor feels, I am inclined to just outright ask a question that gets the point across, but makes it clear that we are asking about a specific situation, and not a blanket "opiates first for all RLS" kind of thing...
As to where to return it.. Well, maybe the foundation should be involved in this, though that is likely a costly, long and bureaucratic process which we'd likely lose a lot of control over.. and then there is the issue as to whom gets to compile the data and how that data is then released to the community..
Getting a flow chart based on the data provided published in a medical journal for instance, is probably going to hard to do, but arguably one of the best outcomes.. If we leave it up to many people to compile the data we may get errors along the way, but we don't want one person to be swamped either..
Either way.. I'll do what I can to flesh out the survey idea in physical form.
However I am at a loss of how to ask about opiates as well.. Perhaps we should condult Dr. B and some other doctors we know.. Being emotionally detached from how a doctor feels, I am inclined to just outright ask a question that gets the point across, but makes it clear that we are asking about a specific situation, and not a blanket "opiates first for all RLS" kind of thing...
As to where to return it.. Well, maybe the foundation should be involved in this, though that is likely a costly, long and bureaucratic process which we'd likely lose a lot of control over.. and then there is the issue as to whom gets to compile the data and how that data is then released to the community..
Getting a flow chart based on the data provided published in a medical journal for instance, is probably going to hard to do, but arguably one of the best outcomes.. If we leave it up to many people to compile the data we may get errors along the way, but we don't want one person to be swamped either..
Either way.. I'll do what I can to flesh out the survey idea in physical form.
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ViewsAskew
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Great!
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.
I do like the idea of an online thing.. as we can just send a blanket fax or snail-mail to offices with a single sheet with the mission statement of the survey, and an address of where to go to fill it out.
Technically we don't even need to use surveymoney or anything, as I have the technical capability and resources to run a survey script off a private area of my web site, and I have a little experience with surveys and forms in the past.
Technically we don't even need to use surveymoney or anything, as I have the technical capability and resources to run a survey script off a private area of my web site, and I have a little experience with surveys and forms in the past.
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SquirmingSusan
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Zach wrote:However I am at a loss of how to ask about opiates as well.. Perhaps we should condult Dr. B and some other doctors we know.. Being emotionally detached from how a doctor feels, I am inclined to just outright ask a question that gets the point across, but makes it clear that we are asking about a specific situation, and not a blanket "opiates first for all RLS" kind of thing...
I'm thinking something like: "Are you familiar with, and willing to prescribe, all the drugs listed in the Mayo Clinic Algorithm.?"
That way it's about all the meds - some doctors know nothing about anticonvulsants, and may not be willing to prescribe them. But it does ask them indirectly about opioids, if they are needed.
Susan