new member here

[pquade]

I just joined this morning, thank you for allowing me to join! I have had RLS for about 20 years, diagnosed originally by a general doctor and then a neurologist. I am 59 years old, female. I have been on several different medications to control my moderate to severe RLS symptoms...if I don't take the meds, the RLS is very severe. My oldest brother and my twin sister have a very mild form of RLS...they control the symptoms with diet and stretching.

I have learned that my dad had a mild form of RLS...he passed away before my symptoms started showing up. I also have sleep apnea. I am taking 0.5mg of Mirapex a day and have been on this drug for about five years and it is now starting to augment. I do have a sleep doctor who is fairly new to me. He has been working with me on my sleep apnea and has only been talking with me about my RLS for a couple of weeks when my new regular doctor refused to refill my Mirapex and referred the refill to my sleep doctor.

My sleep apnea and now the fact that my RLS meds are starting to not work have resulted in sleep deprivation and resulting problems at work. When I talked to my sleep doctor about the Mirapex augmentation, he prescribed Temazepam to help me sleep...and for the last week or so, my sleeping disorder is worse than ever. I went on the internet at 2am because of my insomnia and read that Temazepam could aggravate sleep apnea? I have a call in to my sleep doctor to ask him about that. I am not sure that giving me a sleep medication is the answer to the Mirapex augmentation....if I have RLS symptoms at night, no amount of sleep meds are going to make those symptoms go away...yes, I will be sleepy but I will be walking around the house, trying to stretch out my legs and bumping into the walls because I am sleepy.

My sleep doctor told me if one 15mg Temazepan didn't work, to take another one 30 minutes later...but I work full time...just one is making me foggy in the morning. My real frustration right now, besides trying to figure out if I need to try a new RLS drug, is that I could lose my job on April 30 do to my lack of acceptable performance....I know it is due to sleep deprivation and my supervisor is supportive but she can only be supportive to a point. I have Reasonable Accomodation paperwork but trying to find a medical doctor willing to fill them out is the problem. My sleep doctor flat out refused to fill them out. He said that what he and I are doing (adjusting my CPAP settings, working on the meds) will eventually make my life much better and there will be no need for a Reasonable Accomodation.

I told him about the April 30th deadline and he still referred me back to my regular doctor. I have only seen my new regular doctor four times and it was for unrelated issues. She isn't qualified to complete the paperwork just because she has not seen me for these issues...she referred me to the sleep doctor in the first place. I also have an alcohol abuse problem, recently diagnosed and have been sober for over a month now....my regular doctor is not aware of this. I am trying to fax the Reasonable Accomodation paperwork to the Recovery Center but my counselor there said he may not be able to complete them because he is not a medical doctor. But he is willing to look at them. I do have a call in to my sleep doctor to try once more to get him to complete this paperwork. In my mind, he's the most qualified to fill them out. As a sleep expert, he is very well aware of what sleep deprivation can do to a person and my sleep apnea is severe, according to the sleep test we did in January. So that's my story so far! Sorry to have written a book here. But we all know how complicated this disease makes our lives. Thanks for listening.

[ViewsAskew]

Just wanted to welcome you. I haven't slept in awhile and am too non-functional to read and then write a coherent response. Someone will be along soon, I am sure, to explain how to handle augmentation. The short answer is that there is only one real way to deal with augmentation - to stop the DA, use an opioid to deal with the temporary increased symptoms, and then find a different drug to take.

Many other things that will help you and know Beth, Betty, or others will help you with this.

[pquade]

Thank you for the welcome, Askew. Sorry for your not sleeping in awhile. I can relate! It's been a very weird day. I still can't understand why my sleep doctor refuses to complete the Reasonable Accomodation paperwork. He, of all people, should understand the affects of sleep deprivation on day to day living. I twisted his arm, via his assistant, to at least allow me to fax him the medical questions on the paperwork so he can take a look at them. No promises, is what she said. Lol. I am not holding out hope at this point. I will just deal with stuff as it happens. Worrying about my job doesn't help anything.
Take care!

[Polar Bear]

pq -

I'm sorry that you are in such a horrid position at the moment. I cannot speak with regard to apnea but there are a few members who are dealing with this issue and hopefully one of them will see your post and respond.

We find that insomnia is such a burden for us, sometimes it comes as a result - or hand-in-hand with the WED/RLS symptoms and can become unending. Another path of thought (I think) is that the insomnia is in fact a part of WED/RLS. I have been a WED sufferer for some 30+ years and it was 24/7 before I ever took medication. After trial and error I am now taking a medication cocktail which works quite well for my creepy sensations. In earlier years before medication, I could usually sleep at night.... once I actually eventually got over to sleep which was with difficulty. Now, my symptoms are under some control but the insomnia it seems, responds to nothing. I used to be up all night with WED symptoms, now I am up and about until around 4am because of insomnia. I take a zopiclone sleeping medication, perhaps I should be taking it earlier, but it doesn't seem to have any effect whatsoever.
I fully understand your difficulty in the work situation. Many times I worked having had no sleep whatsoever - it was not good. And as you say, an employer's understanding will only go so far. And yes, once the WED symptoms have started then the medications have a really hard job trying to help. It is necessary to stay ahead of symptoms. And a sleeping aid just can't hack it if the symptoms have started. Especially if it isn't the correct type of sleeping aid.

You have quite a lot going on and it is generally understood that the only way to deal with augmentation is to come off the offending medication and then start over again. Various opinions would say to taper down, others would say it is quicker to just go cold turkey. The best way in my opinion is to stop the medication and have your doctor prescribe a potent opioid to cover the resulting withdrawal. Getting the opioid is easier said than done.

This book is wonderful, it is easy to read and can be used for discussion purposes with your doctor.
Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. These Authors are at the top of the league when it comes to the treatment of WED/RLS. The book covers all aspects of the disease, including augmentation.
It can be found on Amazon. Unfortunately that would take a week or so and you are seeking help and information now.

The Dr Buchfuhrer who is a co-author of the above mentioned book is also contactable on the site http://www.rlshelp.org/ He is very responsive to emails and often responds within a day or so. There are many hundreds of letters on the site together with Dr B's responses and many of these will be about augmentation. There is an email address that you can use to write directly to Dr B but I can't recall it at the moment, it's the middle of my night here in the UK..... If I get the email address I will return and edit this post.
EDIT; Dr B can be emailed directly at somno@verizon.net

On the Foundation Home Page there are links to various publications one of which is regarding augmentation but I have a feeling that it might now be necessary to be a full member to access this. This is the link anyway.
http://www.willis-ekbom.org/about-rls-wed/publications
Having such a publication from a reliable source may encourage your doctor to take heed with regard to the treatment of augmentation.

Also, find a post of 'badnights' and click on the link in her signature. This refers to augmentation and you could print it out to discuss with your doctor.

To be able to talk with your doctor from an informed stance gives you the opportunity to reason with him and seek the help you need.
First thing, I'd get the Book from Amazon and print out some augmentation stuff from badnights signature and from the Foundation Home Site.

I'm sorry I cannot advise with regard to apnea or your Reasonable Accommodation paperwork.
Perhaps others will be able to help in this regard.