Insomnia

[Cheryl C]

Hi MDS forum friends

When I was first diagnosed with MDS and hypogammaglobulinaemia and started 4-weekly IntraGam infusions my insomnia improved dramatically. Now I'm finding that I'm back to regular insomnia and averaging 3-4 hours interrupted sleep night after night. I'm not sure whether it's the MDS or the hypo. I'm not feeling stressed.

Even though I have the infusions my globulins usually sit around 20 (normal is 29-40). My other results last month aren't bad:

Hb 11.2
RCC 3.27
Hct 0.32
MCV 98
MCH 34
Platelets 124
WCC 1.7
Neut 0.8
Lymph 0.5
LD 186
Globulins 20

Alpha-1 2
Alpha-2 4
Beta 5
Gamma 7

Regular sleeping pills are no good for me - have tried many different kinds and they make me feel much worse the next day. I occasionally take St John's Wort and that will often give me a good sleep but not if I take it daily.

Any suggestions? Is this common with MDS ... or hypogammaglobulinaemia?
Thanks.

[tom30]

I've always had insomnia, it got worse in the last few years, I was given a script for Xanax for tinnitus, now I only use it at night about 30minutes before bed, I take .25mg. I also take melatonin (http://www.costco.com/Schiff%C2%AE-M....11645823.html) at the same time. I usually sleep 6 hours. Xanax is suppose to be nasty stuff, very addictive, linked to dementia, lots of side effect and issues documented. I have not noticed anything other than getting some sleep no side effects in morning. I have tried other sleep aids to no avail often with feeling like crap in morning. .25mg of Xanax is the smallest dose that helps, I cut 1mg tablets in qtrs.

[DanL]

i occasionally have some bouts of insomnia but can usually get back on track with a couple of nights of shutting down all electronics an hour before bed, and if that doesn't do it, a couple of Ativan. i will only take something for a max of two nights, but for me it it's all about a pattern or rhythm.

[rar]

I take 1.5 mg of time release Melatonin a half hour before bedtime. It alleviated my REM Sleep Behavior Disorder and helps me get to sleep and stay asleep. It seems to work in about half the population. The mistake many make is they take too high of a dose. More is worse. Recommended starting dose range from .3 to 2 mg.

Ray

[bailie]

It is interesting how different things work for everyone. I will turn my TV on next to my bed and it puts me to sleep. With this prednisone that I am now on/tapering I will wake up after three or four hours and be ready to go. Can't wait to get off the prednisone. A couple of Tylenol works for me, also.

[Cheryl C]

Thanks for the helpful responses!

I'm interested in trying the time-release Melatonin, Ray. Where do you source this? I just read on-line that some use it for thrombocytopenia so that could be an extra benefit. I also read on http://www.webmd.com/vitamins-supple...name=melatonin that Melatonin can increase immune function and might interfere with immunosuppressive therapy used by people receiving transplants!

[rar]

I buy 3 mg Melatonin time release at GNC. My transplant team know that I take them and have no problem with that. You should probably start with a quarter tablet and give it a week or so to see how you do with it. Until a month ago my platlets were below 50 so I guess I have thrombocytopenia. Last month they were up to 100 which is where the doctor expects them to be long term.

Melatonin is a sleep aid. It helps you to sleep but does not put you to sleep. I have tried many different sleeping pills, most of which didn't work or had bad side effects. I have found that oxycodone 2.5 mg will put me to sleep with no effects in the morning. I use it rarely except for when I was in the hospital. It was initially prescribed by my sleep doctor.

Ray

[Cheryl C]

Thanks Ray. Like you I have given up on sleeping drugs. I've also tried many natural remedies. I mostly don't have trouble going to sleep but have real trouble staying asleep after 3 hours or so. I can only find Melatonin 6X Homeopathic on the GNC Australian website. Do you have a link for where you buy it? Or is there a brand name? Would appreciate more details so I can try and source it here. Again, thanks!

[rar]

Here is a link to the product that I use:

http://www.gnc.com/GNC-Melatonin-3-m...uctId=16654966

It is a US website. I don't know if it works down under. I always buy at their retail stores.

Ray

[Cheryl C]

Tks again Ray. Just tried to order, but some restrictions do not allow me to bring this in to Australia. Will talk with my doctor about it.

[Chirley]

Cheryl, I used to have the same problem. Go to sleep okay with early waking and unable to return to sleep. Mine was diagnosed as a sign of clinical depression and I was started on 7.5mgs of Mirtazapine and now I sleep beautifully. (7.5mgs is an extremely small dose)

[Cheryl C]

Goodness! Never thought I the classic phlegmatic would need depression medication, but will definitely follow up next time I see my GP. Can one have depression without realising it?

[Chirley]

I don't know. I thought I had entirety but it turns out it was depression. I thought I only felt sad at appropriate times like when my little dog died or in sad movies but anyway....the tablets worked!

[Barbara K]

Cheryl--It's pretty common in the US for ob-gyns to prescribe low dose anti-depressants to (peri-)menopausal women who are struggling with insomnia issues, including precisely the problem of waking up after about three hours and being unable to get back to sleep. Often the anti-depression drugs are used together with low-dose hormone replacement therapy, but it varies. I've been doing the combo for two years now and must say that it has made a vast difference in both my hot flashes and my menopause-linked sleep problems. I have no idea whether there is any particular reason that an anti-depressant would help with your insomnia, nor do I even know whether I would have met the criteria for depression at the time I started the meds. I know for sure I was exhausted and cranky--as tends to be the case with people who cannot sleep! Right now I am weaning myself off the anti-depressant; so far, so good. But right now I am also living in the south of France rather than the US midwest, so it may just be the sheer joy of escaping winter. At any rate, scattered post, obviously. Sorry. I am wrapping my mind around the sad news from Birgitta. I hope you are well. Barbara

[Smarti54]

I agree with the melatonin for sleep. I order it on vitacost.com and take two pills a night. I get the 3 mg pills with L theanine in them. L theanine is an anitanxiety found in tea and helps relax the body. This was suggested by my psychiatrist and has alleviated waking at night. I also have REM behavioral sleep disorder and it keeps me from acting out dreams. Even if I wake up I easily fall easily back to sleep with this medication. I found it took two weeks to kick in. I have MDS and PoT Syndrome and the anxiety of the diagnosis was keeping me awake since I am 35 and can no longer work (my heart rate runs 120-200 while standing and I pass out often and they are concerned about me putting patients to sleep... Rightly so.) I hope you find rest. Meditation also helps before bed. A great app is Power of Mind. Good luck!!!