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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Re: Dexamethasone-related sleep problems

by mikeb on Sat Sep 27, 2014 11:45 am

About Benadryl - I was using that some when I was taking dex, but my medical team advised against it because they said it has been linked to decreased short term memory function. So that convinced me to allow them to prescribe Ambien for me.

Both Benadryl and Ambien have worked pretty well for me, most of the time allowing me to get a decent night's sleep and wake up feeling pretty normal. To avoid dependence, my rule of thumb was that I would not take a sleep aid unless I had woken up at 4:00 AM or so the previous night. (I never had any problem falling asleep at bedtime, just a problem with waking up too early.)

I've been off dex for about a year now, so much less of a problem sleeping these days.

mikeb
Name: mikeb
Who do you know with myeloma?: self
When were you/they diagnosed?: 2009 (MGUS at that time)
Age at diagnosis: 55

Re: Dexamethasone-related sleep problems

by Cheryll on Sat Sep 27, 2014 4:31 pm

I take dex right before bedtime and sleep pretty well that night. The next night I take Compazine (prochlorperazine) which usually makes me sleepy enough to fall asleep. If not, it's Netflix or a book till I sleep.

Cheryll

Re: Dxamethasone-related sleep problems

by Hans S on Sun Sep 28, 2014 2:36 am

Hello,

I use dexamethasone with lenalidomide (Revlimid), and I handle my sleeping problems by just listening to what I feel, what my body wants at the moment. I go to bed when I am tired (mostly around 10:00 pm) and then I wake at about 4:00 of 5:00 am. I go downstairs quietly (not waking the rest of the family) and I make myself a cup of tea, than read a book or work on my laptop till it's time to make some breakfast (about 7:00 am).

After lunch, I sleep for 45 minutes. But, still, dex sucks, it makes me active when I don't want to be, it makes me different in my reactions on what happens around me. But I give in to it and 'go with the dex flow', and I realize I have to warn sometimes the people I live and work with that I am in a dex-mode. So they understand my condition of activity.

I switched from 40 mg per week to 20 mg per week. That gave me two normal days -- I mean days that I am like I was before I used the dex. Those two days are the days before taking the dose.

Herbal sleeping tea works also for me, although not an 'evidence based' trick, but more a working ritual.

Hans S

Re: Dexamethasone-related sleep problems

by Villa fan on Sun Sep 28, 2014 9:56 pm

I take melatonin for jet lag when traveling and it works well for me. But I found it wasn't enough against 40 mg of dex with Revlimid / Velcade, so I tried melatonin plus Benadryl. That worked quite well.

I was prescribed lorazepam (Ativan) when I was taking 40 mg dex daily for 4 days as part of a VD-PACE regimen. I was wary about the addictive potential and took it only after having a couple of bad nights. Have to say it worked really well and I could stop taking it without any withdrawal problems

As others have said, I took dex with breakfast and didn't try taking it at night. I'm glad to be off it for now. Fluid retention was an issue for me, as well as mood swings, and the feeling of being permanently wired was not good.

Villa fan
Name: Paul Gater
Who do you know with myeloma?: Me
When were you/they diagnosed?: February 2014
Age at diagnosis: 56

Re: Dexamethasone-related sleep problems

by qm3scout on Thu Oct 23, 2014 3:08 am

I've been reluctant to take the Ambien the docs prescribed. I've heard horror stories of sleep walking and driving. Funny how this is the first story I find on here (2 a.m. on Dex Day)

qm3scout
Name: Garrett
Who do you know with myeloma?: me
Age at diagnosis: 38

Re: Dexamethasone-related sleep problems

by Nancy Shamanna on Thu Oct 23, 2014 8:36 am

This is an interesting discussion thread about sleeplessness and dexamethasone. I just started again on 20 mg dex per week. The last time I took dex, in 2009 (and I think more than once a week), I experienced sleep deprivation and became a bit deranged, actually! I have also suffered sleep deprivation as part of a post natal issue after childbirth, 30 years ago. In 2009 I didn't take any prescription sleep aids, but I should have, in retrospect.

As well as going and getting s selection of herbal teas with such names as 'Camomille Pure', 'Goodnight Blend', 'Lemon and Ginger', Honeybush, Mandarin and Orange, 'Goodnight Blend', 'Sweet Dream', which I could use any time, I am trying zopiclone (Imovane), at 5 mg or 3.5 mg, just on or for a couple of days after the dex day. A cup of hot milk is also relaxing in the evening. And I am also taking the sleeping pill at night, so that it would directly relate to me getting a good night's sleep.

But I am also worried about becoming chemically dependent on zopiclone and drugs like them (e.g., Ambien, Lunesta), so am going to ask my doctor about another type of drug, trazadone (Desyrel). It is actually an anti-depressant, but is used by neurologists for sleep disorders.

I realize that some shift night workers, such as nurses, use the supplement melatonin. I bought a bottle of it but, when I looked at the precautions in fine print, it said to consult a physician if you have an immune system disease, or are taking immunosuppressive medications. That would apply to me, so I won't take that med!

Hope that helps!

Nancy Shamanna
Name: Nancy Shamanna
Who do you know with myeloma?: Self and others too
When were you/they diagnosed?: July 2009

Re: Dexamethasone-related sleep problems

by Multibilly on Thu Oct 23, 2014 11:07 am

My understanding is that zopiclone is more addictive than Ambien. I have never felt any addictive cravings for Ambien (I once took it for about 4 weeks straight when I was traveling non-stop between several continents with a brutal business schedule).

But I will say that once I stopped Ambien after that prolonged period of time, it took me a couple of weeks before I could fall asleep at anything approaching a normal bedtime hour (although I can certainly attribute a bit of that problem to some serious jet lag). All in all, I would do it again rather than suffer through day after day in a complete sleep-deprived haze.

I may be wrong, but I think zopiclone is also more closely related to a benzo [benzodiazepine] than Ambien is. I consider benzos to be the scourge of the planet, as I had two close friends become extremely dependent on them and they went through just awful withdrawals. They are simply way overprescribed (although in multiple myeloma, I think most patients only take them occasionally as opposed to daily). If you ever read the story of Stevie Nicks' drug addition, you will find that she thinks Klonopin [clonazepam] (another benzo) was far worse than her addiction to coke. I'm including a link here on her story since I am a hopeless addict of rock from the 70's and 80's.

http://www.benzo.org.uk/nicks.htm

This is a link on withdrawal from zopiclone:

http://www.non-benzodiazepines.org.uk/zopiclone.html

As far as natural approaches, melatonin never did help me at all jet-lag or sleep wise. But Celestial Seasonings Sleepytime Extra tea (which contains valerian) does seem to help when I can't fall asleep

http://www.celestialseasonings.com/products/sleepytime-teas/sleepytime-extra
Last edited by Multibilly on Thu Oct 23, 2014 5:19 pm, edited 1 time in total.

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Dexamethasone-related sleep problems

by Lev on Thu Oct 23, 2014 12:18 pm

This is a good discussion / exchange of experiences. And I am glad that I asked the question here.

I ended up taking Imozop / zopiclone four days during my last dexamethasone treatment. And I got some good nights sleep. And no problems except for the first night without the sleeping tablet (two days after the last dose of dex) btw. do not let the spelling checker change dex :lol:

I may or may not take imozop when/if I am going to take dex again. If it is before a weekend I may decide to do a lot of cleaning at home during the night ... but if I have to go to work the day after the tablets may come in handy.

Best regards

Lev

Lev
Name: Lev
Who do you know with myeloma?: Me
When were you/they diagnosed?: June 2014
Age at diagnosis: 57

Re: Dexamethasone-related sleep problems

by Nancy Shamanna on Thu Oct 23, 2014 1:02 pm

Yes, Lev, great discussion and I have a few new ideas now also.

Multibilly, I don't think I would take an herbal tea containing valerian. I am probably just being overcautious, at the doses present in a tea bag, but there is some contra-indication for people on immunosuppressive drugs against using valerian. I found this article about that. The question of
transplant is there, in the context of organ transplants, but I think the gist of it would also apply to some of us.

Mixing herbal remedies with conventional GP drugs 'could put lives at risk'

Dr Catherine Ulbricht, an American pharmacist and author on herbal medicines, suggests that the danger from mixing is greatest in younger and older people

Read the full story:

"Mixing herbal remedies with conventional GP drugs 'could put lives at risk'," Daily Mail, 23 October 2014.

Nancy Shamanna
Name: Nancy Shamanna
Who do you know with myeloma?: Self and others too
When were you/they diagnosed?: July 2009

Re: Dexamethasone-related sleep problems

by Nancy Shamanna on Thu Oct 23, 2014 1:52 pm

Oops ... I reread the article I posted and it is St. John's wort that can interfere with transplant, whereas valerian can interfere with anaesthesia! So enjoy your cup of tea, Multibilly!

Nancy Shamanna
Name: Nancy Shamanna
Who do you know with myeloma?: Self and others too
When were you/they diagnosed?: July 2009

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