sleep

Whether new to RLS/WED or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
edelman2
Posts: 38
Joined: Sun Jul 05, 2015 1:30 am

sleep

Postby edelman2 » Sun Mar 27, 2016 11:47 pm

Hi,

I'm on 1200 mg Horizant and that just stopped working 2 weeks ago. I do not sleep for 3 days and then crash on the 4th night. I'm getting more and more tired and am able to function less and less productively during the day. No sleeping pills work so I go nights lying awake counting the minutes till first light. If anyone had similar experiences please respond. How you handle everyday activities description would be helpful.
Thank you. Inna

badnights
Moderator
Posts: 4907
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: sleep

Postby badnights » Mon Mar 28, 2016 12:21 am

Hi Inna, what a terrible experience you're going through. When your medication is no longer working, you need to change it, or increase the dose, or add another med. Since you're nearing the maximum dose, a change or additional medication is in order. Sounds simple, but it's not if you don't have the right doctor.

Who is treating you for WED? Has he or she ever treated refractory cases before - cases that do not respond to the recommended treatments?

One possibility is to add a dopamine agonist (DA) - pramipexole (Mirapex) or ropinirole (Requip), or the rotigotine patch (Neupro). Unless you have already tried and rejected these. Have you been on other medications for WED and rejected them for inefficacy or augmentation? If you go that route, be sure to have your ferritin levels checked first. Although non-WED people can have ferritin levels as low as 20 ng/ml, WED patients should never be lower than 75, and many of us need to be even higher. If your ferritin is less than 75, you are more likely to have severe WED, and you are more likely to experience what is called augmentation from taking DAs - a worsening of the disease caused by the very medication that is meant to treat it. Augmentation is a special kind of hell that you want to avoid at all costs.

Another possibility is to add an opioid. Opioids are very effective at relieving WED symptoms. If you haven't tried the DAs yet, your doctor will undoubtedly want you to try that route first. There are other medications that might work as well, but the three main classes are the DAs , the anti-convulsants (including carbemazepine, valproic acid, and alpha-2-delta ligands like Horizant), and the opioids.

Sleeping pills - the benzodiazepenes and the newer hypnotics sometimes called Z-drugs - cannot relieve WED symptoms and can be dangerous to take if the motor and sensory symptoms of WED are not first relieved. WED sensory symptoms can override the strongest sleeping pills, causing your brain to be doped up and groggy while you are still walking around in torture trying to relieve symptoms. You will be in torture because the symptoms are exacerbated by relaxation, which is what the sleeping pill promotes. The Z-drugs are a good choice when you have your sensory and motor symptoms under control, to deal with the hyper-alertness which is also unofficially a symptom of WED. Horizant should be a good med to deal with some of that hyper-alertness, but it won't help by itself if it can no longer deal with the motor and sensory symptoms. /some people find that a combination of DA and alpha-2-delta med works for them.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION & IRON:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

Rustsmith
Moderator
Posts: 3332
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: sleep

Postby Rustsmith » Mon Mar 28, 2016 10:29 am

Hello Inna, I agree with everything that Beth has said. My situation was somewhat similar to yours in that I augmented on two dopamine agonists (DAs) and it took me more than nine months to see a doctor who could change my medication (that's another story). During that time I was getting 3 to 4 hours of sleep each night. So my sleep pattern was not quite like yours, but it sounds like I was getting about the same amount of sleep.

When I finally did get to see my new doctor, she was almost as concerned about my lack of sleep was she was about my augmented RLS. She had to treat my RLS first, but if I cannot get my sleep levels up to 7.5 hrs/night, I expect to be scheduled for a sleep test when I go back in 3 months. More on that later, but at this point I expect I will have to go through the test again.

The message in this for you is that you need to see a doctor who is capable of treating your more complex case of RLS and you need to see that doctor ASAP. Continuing in present sleep cycle is not only difficult on your lifestyle but it is also damaging to your health.

As for coping with my lack of sleep, I have learned to live by taking "micro-naps" throughout the day. If I am at my desk, then I put my head down and sleep for short periods (seconds to maybe 15 minutes). Most of the time I am awake enough to be able to drive around town, but on longer trips I either have to let my wife drive or else I allow sufficient time to be able to pull over and take a nap for a few minutes every half hour. Finally, it is rare that a day passes in which I don't disappear for a half hour or more to take a nap after lunch.
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: 346
Joined: Wed Sep 10, 2014 7:20 am
Location: West Coast, South Island, New Zealand

Re: sleep

Postby Yankiwi » Tue Mar 29, 2016 4:28 am

My dad (born in 1916) had RLS although we didn't know what it was at the time. He took naps in almost every job he had, even if he had to lie on the floor in a stock room during a break. When I was really sleep deprived for many years I'd nap in the afternoon but I don't need to now.

stjohnh
Posts: 565
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: sleep

Postby stjohnh » Tue Mar 29, 2016 1:52 pm

Rustsmith wrote:.... As for coping with my lack of sleep, I have learned to live by taking "micro-naps" throughout the day. ...

Steve, weren't you at one time using edible marijuana also ? Has the switch to methadone solved the sleep problem so you don't have to use edible marijuana?

I've only been on this forum a short time but over the past month or so I think I've read all the threads that have more than 5 pages from start to finish. It seems to me that the sleep problem is consistently a under evaluated.

Based on what I've read and my personal experience I know there are at least 3 separate sleep problems. Firstly and most obviously, inability to sleep due to jittery legs. Secondly there is the problem of dopamine Agonist induced insomnia. Thirdly there is insomnia as part of the disease itself, not related to jittery legs.

This third cause of insomnia I think is a lot more common than is appreciated. Even reading the research papers section shows very little research into this problem. Considering that the Restless Leg Syndrome is strongly circadian rhythm related, it would be actually hard to imagine that sleep disturbances wouldn't be part of the syndrome itself.

I have fairly good control of restless legs symptoms, however I'm still working on the Sleep problem. I am currently taking 300 milligrams Gabapentin and 1.5 grams of kratom at bedtime, this seems to work better than any other combination tried so far, however I am still in the process of evaluating options. I have tried some medical marijuana, however very little edible, and have not found much improvement.
Blessings,
Holland

Rustsmith
Moderator
Posts: 3332
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: sleep

Postby Rustsmith » Tue Mar 29, 2016 2:19 pm

Holland, I am in complete agreement that there are two sides to RLS, at least as I experience it. One is the restlessness and the other is severe insomnia that does not respond to the normal sleep medications.

For me, the switch to methadone has resolved (at least for now) the issue of restlessness. The methadone is allowing me to reduce my pramipexole dose so that I am no longer experiencing issues with augmentation. The augmentation/restlessness symptoms disappeared about an hour after I took the first dose and have not returned.

As for the insomnia, my doctor has me using a combination of 0.25mg pramipexole, 900mg of gabapentin and edible marijuana at bedtime. The gabapentin allows me to fall asleep "normally" and the marijuana allows me to stay asleep for longer periods. After experimenting with several different marijuana products, I have found that the higher THC products are more effective at keeping me asleep than the 50-50 THC-CBD or the straight CBD products. I am currently using 5mg of THC, which is half of a normal "dose".

However, all of this is a temporary arrangement to cover my transition from pramipexole to methadone. I see my doctor again in 3 months and fully expect to be scheduled for a sleep study along with changes to my medication at that time. I expect this not only because of various comments that were made during my last visit but also because the combination of methadone with any sort of sleep apnea can be a concern, and I have the UARS form of sleep apnea.

As for research, Dr Allen at Johns Hopkins is current running a study where they are looking at gluatamate levels in the brains of RLS patients. Several of us have either participated in his study or have been interviewed. I was interviewed but as not selected because he said my case was "too complex". I had understood that the program was supposed to end last year, but they are still soliciting volunteers, so I guess that the final report of the results is not about to be published. If you are interested in participating, the contact details can be found at http://www.rls.org/about-rls/clinical-trials. They need both RLS patients and healthy volunteers for this study, which as I understand it involves several MRI's, a sleep study and SIT tests. For the RLS patients, it also requires you to be off of all RLS meds for at least two weeks.
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.

jul2873
Posts: 372
Joined: Thu Nov 15, 2012 7:32 pm

Re: sleep

Postby jul2873 » Tue Mar 29, 2016 5:15 pm

Dr. Holland,

It is great to have you on this board, and I'm pleased to see that Kratom is part of your solution to RLS. At this point, Kratom completely controls my symptoms and I'm hopeful it will continue to do so.

I don't know where you live, but I hope you're aware that there is a major effort in a number of states to ban Kratom, and several states already have. Here are the articles explaining the effort in New Jersey to ban it: http://www.njassemblyrepublicans.com/?tag=kratom. I understand there is a similar push in New York to have it banned.

I'm hoping that, as a doctor, if you spoke out in favor of keeping Kratom legal, your testimony might have more weight than that of most users. The website of the Botanical Legal Defense I think is the best place to keep up on what is happening, and to donate some money to help them. They have been successful in a number of states in convincing the legislators to ban its use only for people under 18, which seems sensible to me. https://www.botanicallegaldefense.org/

I think a ban in New York and New Jersey would be especially troubling, as so many people either fly out of, or make connections, in the Newark/New York airports. I know I do, and amount of kratom I pack for a long trip would probably get me classified as a dealer. I'm a 72-year-old grandmother, and I never thought I'd be worrying about a long prison term.

Again, thanks for your contributions to this board.

Mary

Yankiwi
Posts: 346
Joined: Wed Sep 10, 2014 7:20 am
Location: West Coast, South Island, New Zealand

Re: sleep

Postby Yankiwi » Wed Mar 30, 2016 7:56 am

Mary, I agree with you that it's great to have Holland on this board. And how horrible to have to worry about flying in or out of states where you could get arrested for carrying your medication.

As far as insomnia goes, my second post in the forum two years ago was about a book that I found helpful.

The book is called "The Sleep Book", and was written by Guy Meadows, a sleep psychologist. He says in the book if you have a physical problem such as RLS it needs to be sorted out first. The book helped me get rid of all my disruptive insomnia-coping behaviours, I recommend it. I used to be up every two hours or less for at least an hour and had a lot of bad habits. I had to order it from Amazon UK.

Polar Bear
Moderator
Posts: 7220
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: sleep

Postby Polar Bear » Wed Mar 30, 2016 2:41 pm

Yankiwi - You are recommending The Sleep Book and to Guy Meadows comment that a physical problem such as RLS needs to be sorted out first.

Mostly our RLS is sorted out i.e. controlled with medication and often opiates.
What comes to my mind is that the controlling medication can often be alerting in itself, apart from there being an element of alertness within the RLS condition itself.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Finally Retired
Posts: 4
Joined: Tue Jul 05, 2016 5:50 pm

Re: sleep

Postby Finally Retired » Tue Jul 05, 2016 9:39 pm

I was dangerously sleep deprived for months recently in 2016. I had dementia characteristics, would hardly go out, made errors, fell, stopped driving except to grocery store, would not stop and visit my friends, just wave at them, etc. Had no idea what to do. My doctor told me to go to bed at 10 and sleep until 4:15 a.m., then get up and NOT NAP at all during the day. I did it, but I am retired and could do it. (4:15 was chosen because I get up with my husband who goes to work at that time) Then I had a sleep study which showed some PLMS but no REM sleep but I was placed on a cpap. I love it and am still adjusting. . .it has been only a week. I now sleep 8 hours a night but am still struggling with RLS. My legs now begin jumping even before my afternoon dose. After doing much reading on this discussion board, I will be asking for the iron test and discussing Augmentation with my MIrapex. We have cut it down once, but maybe it needs more.

Rustsmith
Moderator
Posts: 3332
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: sleep

Postby Rustsmith » Tue Jul 05, 2016 10:50 pm

Congratulations on being able to get 8 hrs of sleep, that is a dream for many of us. Your story is very similar to my own, both the sleep deprivation and cpap. I averaged 3 to 4 hrs of sleep for most of 2015 and the first quarter of this year. My doctor gave me the goal of 7.5 hrs/night. I have just started approaching that this past month.

So, enjoy you newfound ability to get a full night's rest!
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.


Return to “Just Joined?”

Who is online

Users browsing this forum: No registered users and 1 guest