AT MY WITS END

[jwkwak3]

Can someone tell me where I can find a list of doctors that treat this? My family doctor has all but given up after increasing my Requip to 4 MG at bed and 1mg of Klonopin during the the day and and 2mg at night. I also suffer from Sleep apnea along with diabetes (diabetes is well controlled). My family doctor suggested I talk with my sleep doctor about my RLS, so I did and all he did was increase Klonopin to 4mg at night. I can handle that but I am a zombie in the morning and it does not address the issue of my RLS symptoms starting earlier. Sometimes at 2PM other times at 6 PM. I got up this morning, like every morning at 530AM and by 6am I was fidgety and could not keep my leg still. I feel like I am going crazy because I cannot stay still. I know I am probably augmenting but I do not know what else to do. I feel lost this morning, I am physically tired, mentally tired and tired of getting ill with people because they do not understand what I am going through and how it makes me fell like I am going crazy. The only good thing I can see about today is that I am on vacation this week so no work, but that really does not matter to my symptoms. I go back to my sleep doctor on 12/3 I even told him how I felt and his response well let's do 4mg of Klonopin and an Iron test. He did state that iron could be in the normal but if it was on the low end it could cause my symptoms, the results were normal.I will get the number when I go back. So any pointing of new doctors, or anything is greatly appreciated.

Thanks for listening to my rant.

[Rustsmith]

You can take a look through the list of doctors in the thread at the top of the General Topics section. You may be able to find one located near you.

If you could tell us where you are located that might help get a few more suggestions.

Finally, you can look at the list of WED Foundation's Quality Care Centers at http://www.rls.org/quality-care-program/qcc---what-is-it

[jwkwak3]

Thanks, I will check out some of the doctors. I live in SC so there are most likely not many choices.
I just want to feel normal, I remember what it was like before the meds but now I am getting symptoms earlier and in my arms as well. I can literally jerk myself awake and its a violent jerk. I sit at desk all day but luckily my kid has a rule that for every hour we sit we are allowed to get up and move about for about 15 minutes at our discretion. Thank you rule rule of ergonomics. This helps while I am up but it does not long for the feelings to return.

[Polar Bear]

At ropinerole 4mg it's way too high. I also take this dose spread over 24 hours and it was prescribed when 4mg was approved as being ok
It is now considered by WED/RLS specialists that 1mg is best as a daily maximum.
There are other medications.... the anti convulsants and the opiods, the first way to go is to think about coming off the ropinerole.

This book is wonderful, it is easy to read and can be used for discussion purposes with your doctor and for his guidance in treatment.
Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. Make sure to get the second edition. These Authors are at the top of the league when it comes to the treatment of WED/RLS. It can be found on Amazon.
Please consider getting this book.

Also, have you had your ferritin serum level checked, this is pretty important. It is a blood test that is not normally done with routine blood works and you need to ask for it. This tells the level of iron stored in your brain – and that is what is important to us sufferers of WED/RLS. We need a level of around 100, especially if we are taking a DA drug such as pramipezole or ropinerole. When getting the results of this test please ask your doctor for the actual level = do not accept ‘normal’ as an answer. Doctors and Labs may consider 20 to be normal… but it isn’t normal for us.

[jwkwak3]

I will get the book and when I go back to sleep doctor next week I will ask for feritin number. Also none of doctors prescribe opioid easily I know they help me but I don't want them to think I am searching for drugs. When I do get them I only take when absolutely necessary.

[ViewsAskew]

I will get the book and when I go back to sleep doctor next week I will ask for feritin number. Also none of doctors prescribe opioid easily I know they help me but I don't want them to think I am searching for drugs. When I do get them I only take when absolutely necessary.

If you have augmentation - and please read up on that (follow the link in my signature and you'll find some info in that thread - there are also many other threads here about it) - you may need an opioid JUST for a few weeks. It will allow you to stop the ropinerole relatively easily. When you stop the ropinerole you will have worsened symptoms - believe me, it makes the worst you've had so far seem like a walk in the park!

But, somewhere between a week and a month, the excess symptoms will have stopped. Then you can find a different solution - whether pharma or otherwise. A good doc, if you still want a pharma solution, would start you on something such as Horizant - which is gabapentin encarbil. This may work really well for you. If it doesn't, there are many other options because you would find opioids as your only option.

[Rustsmith]

I just want to feel normal, I remember what it was like before the meds but now I am getting symptoms earlier and in my arms as well. I can literally jerk myself awake and its a violent jerk. I sit at desk all day but luckily my kid has a rule that for every hour we sit we are allowed to get up and move about for about 15 minutes at our discretion. Thank you rule rule of ergonomics. This helps while I am up but it does not long for the feelings to return

Take a look at the link in my signature to get an idea of whether you think that you are augmenting or not. My guess is that you will decide that you are. If you are not already a member of the WED Foundation, it might well be worth joining simply to take a look at the Webinar on augmentation that was presented by Dr. Becker. It is very informative and could provide you with the facts that you need to discuss this with your doctor.

[ViewsAskew]

A good doctor really can make all the difference.

If you can travel, there are many doctors worth traveling to. I am in Chicago, yet I fly to California to see Dr Buchfuhrer. I would fly to see Dr Lee, Dr Becker, Dr Silber, Dr Rye, Dr Allen, and several others.

Generally speaking, there are good doctors at Johns Hopkins, Emory, in Houston, in Rochester, in Dallas, In Southern California, and a few other places in the US. Of course, there are other great doctors, too, they are just less well known and often hard to find.

First thing that might help? If you can afford it, buy "Clinical Management of Restless Legs Syndrome", 2nd Edition, by Lee, et al. If nothing else, it will give you hope and show you what a competent doctor would know and how he/she could help you. That was life-saving to me. If you are lucky, you could use it with your current doc - some of us have given a copy of the book to our doctors. Sometimes they use it, sometimes not. Either way, we knew if we had an ally or if we had yet to find one.

I do not want to minimize where you are and how you feel. I just want to say that there is another side to it where things are better. Do what you can to hold onto the idea that it will not always feel this way, that there is help and that you can find it. If nothing else - we understand and that often is extremely nice to know.

[badnights]

If you go to the second link below my name, at the bottom of this post, you will find links to a number of resources dealing with augmentation. The third one is an extract from the book Ann is recommending, that I also highly recommend. The extract is the part of the book that describes how to treat augmentation. I also included the copyright and title page, so whoever looks at it can judge its legitimacy better. Unfortunately I didn't do this before I scribbled on it , but it should still work!

You're on the right path, seeking a new doctor. I was just reading a paper whose authors unfortunately seemed unaware of Buchfuhrer's published recommendations on treatment of augnentation, but they made some good points:

...our study yielded several interesting and important observations. First, dopaminergic drug-induced augmentation was the most common (sole) reason for referring a patient with RLS to a movement disorders specialist. Second, since all referrals came from a practitioner of internal medicine or a general neurologist, it appears that nonspecialty physicians are comfortable diagnosing the condition and prescribing therapy. Third, our referring physicians unfortunately did not seem to know how to prevent or treat augmentation, despite the fact that it is a common complication of therapy. ....It has been estimated that 76% of RLS patients treated with dopaminergic therapy develop augmentation and that dopamine agonists appear to have a limited period of utility for many patients.
Our review of medical records indicated that referring physicians tended to increase dopaminergic drug doses steadily when faced with augmentation. This is in contradiction to the published expert recommendations to discontinue the offending medication and switch to a different drug or drug class. However, it should be noted that, in the published literature on RLS, there appears to be little discussion of the best approach to treating augmentation once it appears, including how best to withdraw the dopaminergic medication.

At this point, I wished the authors had mentioned the augmentation treatment recommendations given in that book we've been talking about, and in Buchfuhrer 2012 (also available on the page opened by the second link under my name).

[jwkwak3]

I really appreciate all the responses, and advice/guidance. I will be reiterating to my doctor about my symptoms starting earlier in the day, it seems they only want to treat what me night symptoms and they are only focused on increasing dosage. I do however appreciate that my Family doctor did say he did not what else to do and said to try my sleep doctor. I looked up doctors and unfortunately I am not in a position to travel to see these guys, I live in South Carolina and airfare out of this area is not cheap along with the fact that I have limited funds with taking on the care of my mother and father in laws. Will post back after I visit the doctor on the 3rd of December.

[badnights]

good luck!

[ViewsAskew]

One thing to try...
If you search (Google, etc) on the phrase: restless legs RLS research South Carolina, you may get lucky and find a doctor who has participated in RLS research. It doesn't always work, but sometimes it turns up an unexpected resource.

There are two important hallmarks of augmentation. One is that the symptoms occur earlier in the day. Many doctors do not even know that WED can occur during the day! But using this symptom may help you help the doctor understand.

Here are a few points that many of us have found helpful.

1. Say that you've learned about augmentation from the Restless Legs Foundation. Please don't say you read it on the internet! Doctors freak out!!!!! Take an article or two that Beth linked to. Highlight the parts you have questions about.

2. Say that symptoms occurring earlier in the day are a hallmark symptoms of augmentation and you'd like the doctor's opinion on it. Ask if the doctor thinks this be happening to you.

You can leave the articles with him with the highlighted sections. The key is to ask him to provide an opinion about what is written there. That will get him to interact with it. You might tell him you will call back in a week to get his opinion and find out what he thinks should be done.

The tricky part is what to do next. You need to know enough about the prospective treatment to spot it if he suggests something else. The hard part is what to do if he suggests something different.

[jwkwak3]

Thanks I will do that, I definitely have a problem with symptoms starting earlier in the day. I cannot even take an occasional nap on the weekends with out feeling like I need to run a marathon. Last night was bad as I took my four Klonopin and 4mg of requip. I was asleep for less than an hour when I jerked myself awake. That was it I was up and awake for several hours. Not sure when I fell back asleep but I was back up by 7 AM EST.

One other question do any of you have worse symptoms with increased physical activity? It seems like I do.

[ViewsAskew]

Some of us find that increased activity is a problem initially. If you make it regular, it often actually reduces symptoms. Moderate exercise, that is! Heavy exercise may be problematic for some of us, even when we do it regularly. And, some of us find little benefit in regular moderate.

Given what you are taking, the likely diagnosis is augmentation. It's not easy to resolve when you don't have a willing partner doctor. Here's hoping you can get one.

[badnights]

I'm one of the people who doesn't seem bothered by physical activity. I used to do intense physical activity 5 nights a week, with no apparent effect on my WED/RLS. As Ann notes, it often seems to be a change in level of activity, not the level itself, that worsens WED, and I did notice increased WED from time to time if that routine was interrupted. However, I have recently been living through months of lessened activity with no apparent effect. I think it's variable from person to person.

If there's an option to exercise earlier in the day, see if that helps.