sleep issues

Anything on your mind that isn't about RLS? It's nice to realize that there is life beyond this disease and have an opportunity to get to know our online family in a different context.
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Polar Bear
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sleep issues

Post by Polar Bear »

My sleep quantity and quality is dreadful even tho I use zopiclone sleeping pills at 7.5mg.

I have put this in the Non-RLS section because my sleep is so poor even if my rls/ekd symptoms are controlled.

Today following a telephone appointment with my GP he has suggested that I try Circadin (melatonin) 2mg. This is licensed (in the UK) for use with the over 55s and their sleep difficulties and is a slow release melatonin.

I have to reduce my zopiclone to 3.75mg for two weeks and then commence the Circadin which can be used for up to 13 weeks.

What little research I have quickly done would suggest that the Circadin is not as strong as the zopiclone but as we are all different I shall keep my fingers crossed. My present sleeping/non sleeping pattern needs addressed in some fashion.

Does anyone have any experience of melatonin.
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

Laurachrissy
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Post by Laurachrissy »

A bit of warning.....I do not know if you've tried Melatonin before or not. (this is not the slow release however, which may be key) I have tried it a few different times over the years and every time it makes my RLS unbearable.

I took Pheneragan over the weekend....it worked.

I hope you have success...just wanted you to google it when you get a chance and see if others have had the same trouble.

http://www.allbusiness.com/health-care- ... 335-1.html

I will try to help pull up some info. to see if it really is contraindicated in RLS. Being it is slow release might make it a do-able drug....would love to hear your feedback.
Last edited by Laurachrissy on Tue Jun 07, 2011 7:14 pm, edited 2 times in total.
RLS sux

Laurachrissy
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Post by Laurachrissy »

I subscribe to this but you can review the abstract for free.

http://www.ncbi.nlm.nih.gov/pubmed/20226733

http://www.ncbi.nlm.nih.gov/pubmed/14991815

again about Circadian.... http://www.journalsleep.org/Articles/280712.pdf and resulting in RLS.

Not that I want you to be a geniune pig but it's not available (correct me if I'm wrong) in the US.
RLS sux

Polar Bear
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Post by Polar Bear »

Thanks for this...
I have two weeks before I start it and will research thoroughly and perhaps email Dr B.
Thanks again.
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

Laurachrissy
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Post by Laurachrissy »

See, it's weird that the phenergan did not exaccerbate my rls.....in the past it did. So you just never know what will work for you that doesn't for others. Benedryl and Melatonin sent me to the moon, I thought phenergan did too but I just took it again over the weekend with no problem.
Last edited by Laurachrissy on Fri Sep 02, 2011 7:42 am, edited 1 time in total.
RLS sux

ViewsAskew
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Post by ViewsAskew »

If I remember correctly, some people here take melatonin successfully. I tried years and years ago, and had more RLS. But, I only tried it one night and that could have been a bad RLS night anyway! it's so hard to be sure without doing it for multiple days and I wasn't about to, lol.

Susan, I think, takes it.

PB, did you do a search on the word melatonin to see if anything comes up?
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.

Polar Bear
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Post by Polar Bear »

'Sleep tight'..... some chance :lol:

The research the Circadin is not very promising.
I have emailed Dr B and will let you know his response.
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

ViewsAskew
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Post by ViewsAskew »

This isn't going to help you in any way....

I think that these drugs change our brains and our sleep. I know yours is different in that you're not sleeping enough, but just wanted to share that even though I often sleep enough, I still feel tired/fatigued. As we were talking about in another thread, this chronic stuff when multiple problems and multiple medications are involved is extremely complicated and hard to figure out.

I hope you find a resolution...and very, very soon.
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.

Laurachrissy
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Post by Laurachrissy »

Polar Bear wrote:
I have emailed Dr B and will let you know his response.
That is so kewl that you can do that. I have only heard of him since joining y'all but I have actually found some of his stuff. He seems like the RLS guru.
RLS sux

Laurachrissy
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Post by Laurachrissy »

ViewsAskew wrote:This isn't going to help you in any way....


You just never know. A lot of gr8 ideas and problem solving comes from just throwing the ball around.
RLS sux

badnights
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Post by badnights »

I am zopicloned and losing it rapidly but have to mention that I posted here links or abstracts, or maybe just a summary, of studies done involving melatonin and RLS - one was a nurse;s article concluding nurses should not offer melatonin to RLSers. The actual reaserch was something in one of my books that summarized a couple of earlier papers too
Sorry I just feel asleep. And I stand up to type. I will try to find the links again tomorrow. cheers all

ViewsAskew
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Post by ViewsAskew »

Beth, that reminds me...

While the thread is really long now, it's really helpful for all of us to post research in the research thread. It makes it a LOT easier to find something when you can't remember enough to search on it.

Now that I'm thinking about it, we could create a new category that's just for research findings, too. Then instead of being in a HUGE long thread, they'd each have their own title.

What say everyone? Like the idea?
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.

Polar Bear
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Post by Polar Bear »

Good Idea. :)
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

Polar Bear
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Post by Polar Bear »

I have received a response from Dr B and will paraphrase his reply.

"""Dr B says that only the first link shows any possible relationship between taking melatonin pills and worsening RLS and that the study was a very preliminary type of study with only 8 subjects.

Circadin 2mg is not available in the USA but Rozerem is available which acts at least 8 times more potently on the melatonin receptors. He has used Rozerem on RLS patients without much if any worsening of RLS so far (does not mean that there is not a problem, just that he has not seen it yet).

Dr B reckons that if there is an effect on my rls/ekd from the Circadin 2mg it won’t be all that bad and if so, then I can just stop it. As melatonin works quite differently from zopiclone, he suggests that I ask my doctor about staying on the zopiclone 7.5mg (unless there are other reasons to lower this dose) as any reduction will make my insomnia worse giving the melatonin less of a chance to be successful.
Dr B goes on to say it would be nice if the Circadin would work alone but he finds that the melatonin drugs often are not that potent when used alone. For patients with long term significant insomnia, he likes to have all the firepower that he can use together (especially as they work in totally different ways) to achieve success. He says I could try the Circadin alone and then add back the zopiclone if needed and that all I have to lose is a bunch of sleep (if I can put up with that).""""


So..... I have made an appointment to see my GP next Thursday to discuss and show him Dr B's comments.

In the meantime............ last night I took my zopiclone 7.5 as usual, an hour later I was still not sleeping, got up for a half hour and took a Carcadim 2mg. Back in bed at 2.30am and fell asleep. Woke up at 5.30am, got up for 15 minutes, back to sleep and awoke at 9.45 am. More than 6 hours sleep total. Don't think it is a coinidence.

My GP had said it is not 'recommended' to take zopiclone and Circadim at the same time but I want to be able to tell him if it works good or not. And also if there is any unwelcome drowsiness next day, which there does not appear to be. I guess I should only try this a couple of times as a 'test' and see what he says at our appointment.

Don't want to appear not to be following his directions. Fortunately he is willing to discuss and help and has also previously noted the content of Dr B's email advice to me.
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

Laurachrissy
Posts: 123
Joined: Thu May 12, 2011 5:11 pm

Post by Laurachrissy »

Polar Bear wrote:I have received a response from Dr B and will paraphrase his reply.

Circadin 2mg is not available in the USA but Rozerem is available which acts at least 8 times more potently on the melatonin receptors. Is this also OTC? I would be willing to try this as well; like he said...if it's not good for the RLS we can just cross that one off the list too.


So..... I have made an appointment to see my GP next Thursday to discuss and show him Dr B's comments. Again, plz let me know what he says, esp. about taking the two meds. together.

In the meantime............ last night I took my zopiclone 7.5 as usual, an hour later I was still not sleeping, got up for a half hour and took a Carcadim 2mg. Back in bed at 2.30am and fell asleep. Woke up at 5.30am, got up for 15 minutes, back to sleep and awoke at 9.45 am. More than 6 hours sleep total. Don't think it is a coinidence. Now that sounds good; are you going to take both together tonight to see if you go to sleep quicker and for a longer period?

My GP had said it is not 'recommended' to take zopiclone and Circadim at the same time but I want to be able to tell him if it works good or not. And also if there is any unwelcome drowsiness next day, which there does not appear to be. I guess I should only try this a couple of times as a 'test' and see what he says at our appointment. Most definitely....as you can have a delayed adverse reaction.

Don't want to appear not to be following his directions. Fortunately he is willing to discuss and help and has also previously noted the content of Dr B's email advice to me.haha, I laughed my tail off when our doctor labled my husband as "non-compliant"...so funny; they have a gr8 relationship but boy is he point-blank with him....luv'n it :)

Please update....I will look for Rozerem online right now. Thanks for the info.!


Hey, I found it and it says it takes up to 10 days for full effect but you gotta have an RX. I will ask my Rheummy. thanks http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000321/ Also, it states that it acts similar to melatonin but I see it acts on the M1 receptors and not Ds or the Hs....so maybe that is KEY.
RLS sux

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