Need Sleep

For everything and anything else not covered in the other RLS/WED sections.
2BassetMom
Posts: 159
Joined: Mon Mar 30, 2015 7:06 am
Location: Idaho

Need Sleep

Postby 2BassetMom » Sat Jul 28, 2018 8:15 pm

I find that in the past few weeks that I am only able to sleep for 1 hour at a time. I used to get maybe 2-3 hours. The only meds I am on are oxycodone and OxyContin CR at bedtime. I take iron & magnesium. My ferritin level was 80 last April and we are hoping to get it over 100. I see a sleep doctor at the end of August finally. I have been trying to get in since April. My pain management PA is prescribing the opioids and I don't really have any faith in my gp to grasp what RLS entails. I have an appointment with Dr. Poceta, the specialist in LaJolla CA at the end of Sept. So, I am feeling kind of stuck with this amount of sleep. It is affecting my daily life severely. I'm like my cat, seeking sleep all day. Even in the day, I only can lie down for 1 hour before the legs start dancing. In the night I have to stay up for about 1-2 hours for limbs to calm down and get sleepy. I have no ambition to do anything. I feel guilty for not keeping my house the way I used to and find that things that brought me pleasure don't appeal to me. I used to bake bread, sew and walk the dogs. There is no energy left to do those things. I appreciate being able to come on here and share because I know you understand. Thanks for listening.

stjohnh
Posts: 569
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Need Sleep

Postby stjohnh » Sat Jul 28, 2018 9:53 pm

How about adding a tiny dose of a DA? Maybe 1/4 tablet of ropinirole or pramipexole if you have it. Or maybe add kratom to what you are taking.
Blessings,
Holland

2BassetMom
Posts: 159
Joined: Mon Mar 30, 2015 7:06 am
Location: Idaho

Re: Need Sleep

Postby 2BassetMom » Sat Jul 28, 2018 10:36 pm

I will give that a try. I do have Ropinirole on hand. Thanks! Thanks!

ViewsAskew
Moderator
Posts: 15302
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Need Sleep

Postby ViewsAskew » Sun Jul 29, 2018 8:22 am

How long have you been taking the opioid? I wonder if it is tolerance...I muse about that because I am one of the few here who suffers from 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.

2BassetMom
Posts: 159
Joined: Mon Mar 30, 2015 7:06 am
Location: Idaho

Re: Need Sleep

Postby 2BassetMom » Sun Jul 29, 2018 12:01 pm

That's a thought. I have been on opioids off and on since thyroid cancer in 2004. There have been seasons of pain throughout those years. I had shingles in my ear causing Ramsay Hunt Syndrome, knee issues and back issues. I will need to bring this up with my PA at the pain management. She has become my champion in treating this awful disease. Meanwhile, my husband, family and friends are very supportive and help me through the tough times.

ViewsAskew
Moderator
Posts: 15302
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Need Sleep

Postby ViewsAskew » Sun Jul 29, 2018 8:15 pm

Having supportive people around - so nice to hear you have them - and a supportive PA is almost indescribably wonderful.

My - sounds like you have definitely had your share of pain issues.
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.

debbluebird
Posts: 1857
Joined: Mon May 21, 2012 3:27 pm

Re: Need Sleep

Postby debbluebird » Sun Jul 29, 2018 10:26 pm

I am now taking 3 meds spread out, at all small doses. It is working for me.
Methadone 2.5 mg every 6 hours
Gabapentin 600 mg twice a day, 2 pm and 8 pm
DA, mirapex .125 mg one every four days 8 pm
I am getting loads of sleep finally.
4 to 6 hour stretches, then back to sleep for more after potty break.
I think the trick is low doses, spread out to prevent hyper alertness and prevent tolerance.

2BassetMom
Posts: 159
Joined: Mon Mar 30, 2015 7:06 am
Location: Idaho

Re: Need Sleep

Postby 2BassetMom » Mon Jul 30, 2018 10:58 am

Thanks! I will definitely mention this to my PA and my specialist. It makes sense.

BB_CRNA
Posts: 4
Joined: Thu Aug 23, 2018 1:55 pm

Re: Need Sleep

Postby BB_CRNA » Sun Aug 26, 2018 8:54 pm

Magnesium chloride sprays to my legs definitely help. I add menthol 16 % on top of that from a rollerball, or repeat the magnesium chloride.
Also a anti inflammatory at bed time is helpfull. To reduce inflammation even more i add probiotics and vitamin D optimized.
All the above makes.me wonder at the origins of RLS. Spent 40 years giving anesthesia. Devistating when i do not get enough sleep.

Rustsmith
Moderator
Posts: 3348
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Need Sleep

Postby Rustsmith » Sun Aug 26, 2018 9:12 pm

BB_CRNA, the latest research at the NIH has found that the source of RLS is a deficiency of iron in the brain. This leads to imbalances in the levels of adenosine, dopamine and glutamate. The high levels of dopamine result in the movement issues and the high glutamate is responsible for the insomnia.

As for the basis for the low iron, that is probably where we all differ. Some have low general iron stores and others simply cannot get the iron from the blood stream into the brain.

To learn more, take a look at the links to the papers in next to last page (26) of the "Published Research" discussion in the General Topics forum. http://bb.rls.org/viewtopic.php?f=5&t=4749&start=375
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.

Yankiwi
Posts: 347
Joined: Wed Sep 10, 2014 7:20 am
Location: West Coast, South Island, New Zealand

Re: Need Sleep

Postby Yankiwi » Mon Aug 27, 2018 7:50 am

I have painful rls. When I wake up, always with pain, if it is severe and won't go I rub Voltaren gel on my calf. So far that relieves the pain temporarily, long enough to get back to sleep. It does not work preemptively though.
The tube says to consult a doctor if using for more than two weeks but I asked my GP and she said I could use it as needed.

2BassetMom
Posts: 159
Joined: Mon Mar 30, 2015 7:06 am
Location: Idaho

Re: Need Sleep

Postby 2BassetMom » Tue Aug 28, 2018 6:50 pm

Today I finally have an appointment with a sleep doctor. There is only one in our area and it has taken since April to get in with him. I hope he has some suggestions as to how to get more sleep. I have slight sleep apnea so he will be addressing that. I'm hoping he is familiar with RLS!

ViewsAskew
Moderator
Posts: 15302
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Need Sleep

Postby ViewsAskew » Tue Aug 28, 2018 11:28 pm

Let us know what happens. Hoping for the best.
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.

2BassetMom
Posts: 159
Joined: Mon Mar 30, 2015 7:06 am
Location: Idaho

Re: Need Sleep

Postby 2BassetMom » Wed Aug 29, 2018 7:51 am

The sleep doctor knows RLS very well. I was so pleased with his knowledge. I don't have slight sleep apnea, actually it is severe at different times during the early morning hours. He is concerned and will do a sleep study with a c-pap machine in the lab. We talked about medications and he understands that I augment on DA:s He is also concerned about my being on OxyContin CR during the night. It is not good with sleep apnea. He says if we get the apnea under control we will see an improvement in the restless legs. He has seen it with his patients. Also, he commented on my a-fib saying that it can be caused by sleep apnea. He said more than a few times that I am complicated and I hear that frequently from my doctors. Not fun. We will start with me easing off the OxyContin gradually. And he wants me to be sleeping on my side to aid the efficiency of the c-pap. I am a long time back sleeper and I tried that tonight with little success. It's going to be quite a journey. Lots of changes but he is hopeful as am I. My husband was with in the room and I am glad as there was lots of information handed out. Bottom line: I like him, he is sharp and he is sympathetic to my RLS. He is the only sleep doctor in the area so I won't get my sleep study until Dec. 3.or earlier if there is a cancellation. By the way, it is 12:50am and I am up as usual with my legs doing their jig.

debbluebird
Posts: 1857
Joined: Mon May 21, 2012 3:27 pm

Re: Need Sleep

Postby debbluebird » Thu Aug 30, 2018 1:14 am

They told me the same thing: get sleep apnea under control and that will improve the RLS. For me I really don't know if it made any difference.
I do recommend small Amy's of the DA with days in between, as stated above.


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