sleep issues

Post by **Polar Bear** » Thu Jun 09, 2011 1:28 pm

Might take both of them again tonight, not quite decided yet.
I daresay I need to have taken both of them on at least a couple of occasions to be able to see that they are doing a good job for GP information, and to convince GP to let me take both drugs at the same time.

Will definitely be taking them on Monday night. Myself and sis-in-law share the same birthday and we both been gifted an overnight spa break with unlimited use of hydrotherapy facilities and two treatments, fabulous dinner etc. Its a wonderful hotel and we have got an upgraded room. So do not wish to keep her up all night (twin room) tho she also has rls symptoms to a lesser degree. Ooops... sorry, I digress.

I will update regarding the melatonin in due course.

Post by **badnights** » Sun Jun 12, 2011 7:37 am

Ann, I think a Research forum/category is a great idea!

PB, laurachrissy, etc: Dr. B says only the first link shows a possible relationship between taking mealtonin pills and worsening RLS, which is true, but isn't it also relevant that the second link (referring to laurachrissy's post above) shows that natrual levels of melatonin in saliva increase just before onset of worsened RLS? I guess not, because that study does not demonstrate cause as well as the first study, only a temporal coincidence.

I have a sweet little sectino in an RLS book that summarizes melatonin research, but I can see it's better to look at it from Dr B's carefully objective viewpoint. There is not much solid to link melatonin with RLS, but some intriguing indirect stuff, for example melatonin inhibits dopamine secretion (in mammalian nervous systems).

So PB I was very interested to hear that your first night with melatonin seemed to be sleepyer (sleepyer?!). Do tell us all if this continues.

Post by **Polar Bear** » Sun Jun 12, 2011 12:45 pm

I did a second night with the zopiclone and the melatonin and again slept much better.... one hour sleep, one hour up and awake, and then 5 hours sleep. This is unheard of.

For the last two nights I have taken only the zopiclone and am back to the awful non-sleep again.

Coinicidence.... I don't know.

Don't want to take any more double dose sleeping meds until I see my GP and show him Dr Bs comments. Have to be diplomatic 'cos don't want it to appear as though I am disregarding GPs views. My GP is so willing to help.

Laurachrissy · Post by **Laurachrissy** » Sun Jun 12, 2011 12:47 pm

That is awesome

P.S.
I took another Phenergan the other night without my 3 doses of Requip; just the one nighttime dose and I walked all night long. I was so hopeful to find something that worked. I know I cannot take Benadryl, phenergan, melatonin and now the ambien does not work.

I am going to ask about that new drug mentioned earlier. When are you going to try it?

Post by **Polar Bear** » Sun Jun 12, 2011 12:51 pm

I am so hoping that my GP will prescribe the two drugs to be taken together even though the melatonin pack says not to use with any other sleeping aid. Am I hoping for too much ??

GP of course, may say he wants me to try it his way, i.e. reduce the zopiclone to 3.75 for two week, then stop it, and start on the melatonin (which Dr B reckons is not potent enough). If GP says this I reckon I have no option but to do it his way and then if necessary go back and tell him the melatonin on its own has/or hasn't been enough.

Laurachrissy · Post by **Laurachrissy** » Sun Jun 12, 2011 12:54 pm

Isn't that Rozerem like 8x's more potent than the otc melatonin? or did I read that wrong?

I am willing to try anything as long as it passes thru quick enough.

Post by **Polar Bear** » Sun Jun 12, 2011 1:04 pm

My Melatonin is not OTC. It is called Circadin and is melatonin 2mg slow release. (I didn't know melatonin was available OTC)

And Yes, my understanding also is that Rozerem is x8 times more potent that Circadin.

I also am at the point of being willing to try anything for sleep.
I'd eat my mattress....

Laurachrissy · Post by **Laurachrissy** » Sun Jun 12, 2011 2:11 pm

Yeah, I bought my melatonin from Wal-mart. http://www.google.com/url?sa=t&source=w ... S8_50DXvYQ

Laurachrissy · Post by **Laurachrissy** » Sun Jun 12, 2011 2:13 pm

P.S.

Polar Bear wrote:I also am at the point of being willing to try anything for sleep.
I'd eat my mattress....

haha, that totally cracked me up! I hear ya!

Post by **badnights** » Sun Jun 12, 2011 4:18 pm

PB I don;'t think you HAVE to do whast your GP says. I mean, I guess you do, in that you can't take something he won't prescribe. Oh dear, I just hope he can see that you sleep much better but still not enough with both drugs. It seems obvious that decreasing the Z will harm you. Don't be too meek with him - tell him what you expect to happen if you do it his way.

Maybe I should start melatonin too.

I am starting a thread about my own recent experiences with cutting down on Z.

Post by **Polar Bear** » Sun Jun 12, 2011 9:37 pm

Thanks Beth, I am hopeful that GP will cooperate, but don't think I will tell him that I've already tried it. I may just show him the emails from Dr B and asks what he (GP) thinks about it.
In the meantime I am back at non sleep on 7.5 mg Z. or actually its a fractured3 or 4 hours.
Perhaps if he won't prescribe both, I could tell him that I'd prefer to stay on the Z rather than go for something that is less potent. And then I could buy Melatonin. I am so naive, I thought that all OTC sleep stuff was useless... I wonder if Melatonin which is not slow release is of any use.

Laurachrissy, thanks for the link, Melatonin is so inexpensive ??? Tho it is likely not slow release. I imagine it will be available in a health food shop and will check on this.

Laurachrissy · Post by **Laurachrissy** » Sun Jun 12, 2011 11:23 pm

Ur welcome :wink:

No, it's not the slow release.....as I would try the rx if given it to see if I could tolerate it. If you do try the prescription strength plz post back. Thanks.

Post by **Polar Bear** » Mon Jun 13, 2011 8:37 am

Its the precription strength of 2mg Prolonged Release that I have used now 4 times. 3 x times was terrific.

Last night (4th time) I used the double meds as my s-in-law and I are going today for an overnight spa treat and I thought I'd be as well slept as I could be so as to make the most of it !! Unfortunately I kept waking up about every hour. Got back to sleep but it was not a solid stretch of sleep.

SquirmingSusan · Post by **SquirmingSusan** » Tue Jun 14, 2011 5:01 am

I do take melatonin just about every night, along with my Xyrem (GHB). You'd think that the Xyrem would be enough to knock me out and make me sleep, but I find that I wake up after only 2 hours a lot of the time. With the melatonin, I get a bit more sleepy and usually get 2.5-3 hours per Xyrem dose. I take a sublingual 1 mg. dose. I can't remember the brand name, but it's by far the best melatonin I've ever found. I find that if I take more than 1 mg. of the stuff, that it does bother my RLS the next day. But then the Xyrem bothers my RLS the next day and gives me a heck of a rebound in the morning, so maybe it's not the melatonin. There just seems to be a correlation with too much melatonin makes things even worse in the morning.

If you're looking for extended release melatonin, swansonvitamins.com has some and they are usually good quality and relatively inexpensive.

Before I was diagnosed with narcolepsy, I tried just about every sleep aid out there, prescription and nonprescription. And don't even ask about how many of them I would take all at once. It's a myth that narcoleptics sleep well! Our sleep is horribly fragmented, with sleep stage changes every few minutes and lots of awakenings. Add in RLS and PLMs, and things were pretty bad. Anyway, the ones that worked for me were Lunesta, Ambien, Unisom (no idea why that didn't make my RLS go nuts like Benedryl does), Sleep MD, and melatonin. I tried Rozerem and it didn't make me actually sleep, just made me sleepy. But everyone is different as far as how these things affect them.

I've never heard of anyone having problems combining melatonin with other sleep aids. Melatonin doesn't suppress breathing like many of the other sleep aids, both prescription and nonprescription. It's a natural hormone that just works with the body clock to set the body up to sleep.

Post by **Polar Bear** » Thu Jun 16, 2011 5:42 pm

Saw my GP today and had to talk really quickly to get everything said within my appointment time

Good news is that my ESR inflammation levels continue to be good so my steroid can be further reduced which means 4mg daily, a big drop from the original 50mg daily. This tiny reduction of steroid may in some little way help sleep issues.

I then approached Doc regarding Dr B's suggestion that I stay on the
7.5mg Zopiclone and also take the Circadin 2mg (slow release Melatonin).

I told him I had already done a double-med test and that the result was good.
Doc says.... Well... you really want to be off these Z drugs.
I says........ Well... I really want a night's sleep.
Doc says... Circadin should not be taken with any other sleep drug as it will increase the effects of the sleep drug.
I says..... Well doc... without wanting to appear too flippant, I am all for that !!
He just laughed.

However he suggested we do a bit of a compromise. I should go down to 3.75 Zopiclone and take it with the Circadin SR. After a few days I should half my 3.75 pill and take that half with the Melatonin, then go to just the Melatonin and see how it goes. Doesn't seem like much of a compromise from where I'm looking at it.

I guess I should go along with his wishes, see what happens and then revert to him. For instance, Circadin can only be taken for 13 weeks... so then what?