Thanks for the add Rustsmith

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Rustsmith
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Re: Thanks for the add Rustsmith

Postby Rustsmith » Sat Feb 03, 2018 5:33 pm

JoLyn, if you are interested in the Quality Care Center in La Jolla, you may need to talk to them soon. Many of the QCC's have wait times for first appointments that can be from 2 to 6 months.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

JoLyn
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Re: Thanks for the add Rustsmith

Postby JoLyn » Sat Feb 03, 2018 5:36 pm

badnights wrote:Your doctor may not even know about augmentation. You can tell him/her that you've learned two things that you need to ask him about before raising your dose, and that it's critical. First, you learned from the RLS Foundation that ferritin levels below 75 are associated with a higher risk of augmentation, second, you learned that the maximum daily dose of Mirapex recommended by some specialists to avoid augmentation is 0.25 mg (see quote below). Have some of the Foundation's brochures handy as ammunition, so he will take it seriously. Best one is the Medical Bulletin for healthcare providers - the link below my name below this post takes you to a page where some useful links are, plus information on how to download the Bulletin.


Thanks a bunch! My doctor seems to think my RLS is secondary to the Sleep Apnea. I don't agree with him at all but I am still working with him because he does listen. I do need to request the ferritin test because I have never even had that before. I am being patient and biding my time with him. We have been in touch through email but I will schedule an appointment in about a week or so. That way I will be able to take some documentation with me. Right now I am following his orders and taking the 0.1 mg Mirapex dose even though I know it is not a good idea. He did tell me there are other medications for RLS but didn't specify what they are. That is another thing I will discuss with him.

I'm still pretty frustrated!

JL

badnights
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Re: Thanks for the add Rustsmith

Postby badnights » Sat Feb 03, 2018 6:44 pm

Beth this is so very frustrating. I have only seen this doctor a couple of time and I do really like him. I think he has a real desire to help me and is willing to learn. I am pretty sure that email is just not going to get it and I need to go in and see him.

What do you do to treat your RLS? I have so much to learn!


I don't agree with him at all but I am still working with him because he does listen....... I am being patient and biding my time with him. We have been in touch through email but I will schedule an appointment in about a week or so. That way I will be able to take some documentation with me. Right now I am following his orders and taking the 0.1 mg Mirapex dose even though I know it is not a good idea.

Based on his email that you reproduced, I do think your doctor is open-minded and willing to learn. I would stick with him, but if you can also get in at a QCC, do so since it takes a long time. Never put all your eggs in one basket when it comes to your health!

I have been through what you're going through, in that I was also the guinea pig for various doctors to learn on. It's sad but I don't see a way around it. I'm currently taking hydromorph contin and a bit of pregabalin (Lyrica) for the WED, plus zopiclone and trazadone to sleep and modafinil to stay awake. What a mess, huh? I'm not sure why I need the modafinil, since I seem to need it even when I've been sleeping well, so either I'm not really sleeping well, or one of my other meds is causing next-day sleepiness.

Can I ask if you mean 0.1 mg or 1 mg?
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

JoLyn
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Joined: Wed Jan 24, 2018 8:47 pm

Re: Thanks for the add Rustsmith

Postby JoLyn » Sun Feb 04, 2018 1:07 am

badnights wrote:

Can I ask if you mean 0.1 mg or 1 mg?


Okay, I don't seem to get the dosage right, lol ... I am taking two 0.5 mg pills. So isn't that 1 mg?

I am hoping that my doctor will prescribe something for pain management now that I have my CPAP and he won't need to be concerned that I will stop breathing during my sleep. It is difficult to even fall asleep even when the RLS is not happening, because of the pain in my neck, shoulders, hips and lower back. (not to mention my knee and ankle). You know my RLS was better when I was taking hydrocodone. In fact, every time I have stopped taking pain meds my RLS acts up worse. I am taking a low dose of Remeron (an antidepressant) for sleep, not depression. Here in the USA if you are over 65 doctors will not prescribe regular sleeping pills or even tranquilizers, plus a bunch of other things. This just started a couple of years ago and it is very frustrating because there are things that could help me sleep but they won't give them to me because I am 68 now. Another frustrating thing!!

Aha ... I was just looking at the Mirapex dosage and now I get it two 0.5 mg tablets is 1.0 mg or 1 mg, not 0.1. I was absent during math class, haha!

Thanks Beth!

stjohnh
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Re: Thanks for the add Rustsmith

Postby stjohnh » Sun Feb 04, 2018 2:16 am

badnights wrote:... I'm not sure why I need the modafinil, since I seem to need it even when I've been sleeping well, so either I'm not really sleeping well, or one of my other meds is causing next-day sleepiness...


Beth,
It's almost certain that you are not getting enough deep sleep. Deep sleep is what causes you to feel refreshed the next day, and it doesn't matter how many hours of light sleep you have, if you don't have enough deep sleep you will not feel refreshed.
The Pivotal Role of Adenosine article does discuss this somewhat, pointing out that low extracellular adenosine levels are associated with sleepiness.

Actually the Gabapentin / Lyrica drugs are one of the very few classes of drugs that are known to increase deep sleep. They are known to affect the hyperglutamatergic state in RLS. It's possible that you may feel better by increasing the Lyrica and decreasing the trazodone and zopiclone.
Blessings,
Holland

badnights
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Re: Thanks for the add Rustsmith

Postby badnights » Wed Feb 07, 2018 6:30 am

thanks Holland. I tell that to other people all the time, but I fall prey to the absence of normal, too. I haven't felt normal sleep in a decade now, so I am not sure what it is anymore and I fool myself into thinking that sleeping 8 hours with 6 wake-ups (that I know of) is good.

I actually have recently increased the Lyrica, but not by much, from 5 days a week to daily. I have feared it because gabapentin affected me so negatively (profound depressions). I will consider increasing it, to see if I can get off one or the other of the traz or zop, but I admit I am leery of it.

I just started the trazodone a few months ago, and it seems to help maintain sleep, and make me sleepy, but try as I might, I can't fall asleep for long without the zopiclone. So one for maintenance, and one for initiation. And the Lyrica ... the tiny dose (75 mg) whose effect I'm not sure of but I feel more refreshed when I've taken it. I think.

My read of the article was that wakefulness increased adenosine levels, until with prolonged wakefulness, it reached levels that induced sleepiness via activation of the A1 receptors, which inhibit glutamate release. I will post more in the other thread...
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.


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