Hi all, hope everyone is doing as well as they can be. Been a while since I posted. My WBC is now up to 25.67, Lymph% 77.3 and Lymph # 19.84. Still on W&W. Wondering if anyone else is having a similar sleep issues. Even with taking Melatonin 20mg before bed, I fall asleep feeling fine. I wake up in the middle of the night with a feeling of being very tense. Like you want to contract all your muscles in a shudder. The feeling goes away if I stand up or get up. Comes back when I lie down to go back to sleep. It is like I am stressed, but my brain is not stressing on anything. I am also having super vivid dreams (like I did when on Chantix 12 years ago). Not nightmares but very vivid. My doctors, thinking I am stressing, prescribed Escitaloprám and I quit that cause it gave me night sweats. I then was prescribed Sertraline - it too gave me night sweats. Sweats went away when these meds were stopped. I am at a loss. My days are fine, feel good and have no issues. Got a PET scan tomorrow, and redo labs on Thursday. Any ideas? TIA
Any ideas on sleep issues: Hi all, hope everyone... - CLL Support
Any ideas on sleep issues
I sleep much better with my WiFi router turned off, at the mains......
It's worth a try.
You may be having some of the "less common side effects of Melatonin" Also note the other drug interactions listed in the Mayo article linked.
"Other, less common melatonin side effects might include short-lasting feelings of depression, mild tremor, mild anxiety, abdominal cramps, irritability, reduced alertness, confusion or disorientation, and abnormally low blood pressure (hypotension). "
mayoclinic.org/healthy-life...
Thank you SO much. Very interesting - I will explore further and stop the Melatonin and see what happens. It is a very disconcerting feeling to fall asleep feeling fine and wake up 3 or 4 hours later feeling like my body is in a stress time warp.
I agree with JigFettler and checking out the possibility of Apnea would be a good thing to do. The jerking/shuddering you describe CAN be caused by a lack of oxygen .
Exactly what triggered my thoughts on this. The key issue is to get a formal assessment as I learnt from my friend Jack.
Jig
Just to clarify because I guess I wasn't clear. I didn't say I was jerking. The shudder I was referring to is when like when you are cold and pull your arms in, hunch your shoulders and do a shudder. Don't believe I have sleep apnea. Just trying to figure out why I go to sleep feeling fine and wake up 3-4 hours later feeling stressed but only in my body (like a knot in my stomach) but not in my head. Will try to skip Melatonin and see what happens.
the following site may give you some ideas of what has worked for others. I often use a breathing technique to get to sleep. I do not go to bed as early as I used to, because if I am not somewhat drowsy, I will toss and turn and my mind goes everywhere.
If i have been in bed around 20 mins and not asleep, I get up and go to my living room sofa--turn on TV and fall asleep---when i awaken from that, i can usually go to bed and sleep for the rest of my night.
I do best to not go to bed too early and to have something to read once I do go to bed, but sometimes that doesn't work.
Being retired and having few if any early morning rising needs is a blessing with age and fatigue. I do not sleep during the day no matter what my night has been like. And that usually makes the night after one I have not slept well, a good night's sleep.
Hey! I too am retired, and still savour those early morning moments on waking and when I DON'T need to get up and go to work. Jig
Do you have sleep apnoea?
originalText
This can be diagnosed by a sleep study via your doctor - or indeed if you share your bed then ask that person to observe if you hold your breath and waken abruptly.
I had it with my neck nodes pre chemo - since chemo, no nodes - no sleep apnoea.
Its important to diagnose - or indeed exclude. So see your friendly family doctor. 😀
Jig
I probably have restless legs syndrome too, I even read about it 4-5 months ago. I did an iron test - down is good and so I learned that practically the probability of a man getting low iron levels is very, very small. Everyone a man has a reserve of iron in his liver for 1 year ahead. I abandoned this problem because they came out bigger and more important.
On this clip you can see my condition. Things are not good.
youtube.com/watch?v=grEypMD...
😀
Hi, the video I linked can be played by others? There might be a geo-restriction, that's why I ask? Cheers!
language barrier---I saw a dog rolling on floor briefly, and then a letter form occluded the video and access.
Sorry, I suspected there might be such a thing. In such cases, I use a VPN, specifying which country I want to be in. This overcomes regional restrictions.
Especially because of you!youtube.com/watch?v=grEypMD...
I have been on W&W five years. I now approach new issues with the thought that they may have something to do with CLL or might not. So looking at other causes of sleep problems outside of CLL can only help.
I also take Melatonin but in a time released formulation. That helps me stay asleep or go back to sleep.
I sleep better when I am physically tired. Getting exercise is important and I believe being outside is important.
Sleep apnea can wake you up and prevent you from resting well even while asleep. As others have noted, you can have a sleep study done with a referral from your GP. My husband has sleep apnea. Not only does he sleep better using his CPAP machine - so do I.
I try to avoid the news at night. We do something else after dinner - take a walk, watch Netflix, etc.
I listen to an audio book most of the time. I use one air bud, and move it from ear to ear as I change positions. I listen to the same set of stories over and over again. It engages my mind just enough to let me fall asleep.
My daughter gave me a water pad that is cooled by a small, stand alone evaporative cooler. On warm/hot nights, it is wonderful feel the coolness. If it’s not hot, just sleeping on the water pad is so comfortable. No hard spots. When I started using it, my resting heart rate declined by 8 to 10 bpm on average.
Hope one of these ideas might help. I still have the occasional night when sleep eludes me but now it’s a few times a year rather than a few times a week.
Good morning, I too have problems sleeping, I try not to watch anything negative before bedtime. What helps me is on YouTube I listen to Jason Stephenson sleep stories for grownups or guided sleep meditation. When I listen to the stories I actually repeat them and concentrate on falling asleep, before I know it I am fast asleep.
I tried Melatonin and it doesn’t really work for me. In addition my doctor said you cannot take Melatonin for a long period of time because the body will stop producing it. Good luck.
Best,
Angie
Sleep stories for grownups? I love that and am already looking up Jason Stephenson! My chiropractor said the same thing about melatonin… it works at the beginning but then stops.
There are lots of "everyday" things that affect our sleep more than we think. Alcohol, exercise and sunshine definitely come to mind, but other things too. For whatever reason if I take acetaminophen before bed, I sleep for exactly 5 hours and awake. I haven't figured out the cause, only that it's true. I think your symptoms definitely line up with RLS and many people have good results taking Magnesium. Mg is also known to relax your muscles which may be helpful. Melatonin is often more helpful at smaller doses, so trying 5 or 3 or 1 may be a choice. Also, get sun as soon as possible in the morning....it tells your brain how to set your clock!
I experienced something like this in the past a few times but I was stressed during those times. It's like waking up scared of something but you can't put your finger on what you are scared of. Meditation and positive thoughts used to help.
Having CLL is stressful in itself. Have you tried taking magnesium in the evening..? Also, getting exposed to natural sun light when you wake up in the morning may help reset your circadian rhythm… Have you checked your vitamin D levels recently…? I used to have low vitamin D levels and low quality sleep.
Have you tried an app called Calm?
My WBC is 133K. Skip the melatonin. Get outside and try to walk as much as possible. Stay away from sugar and cut back on the carbs. That should help the night sweats. I am just beginning a plant based diet. Trying to shrink my lymph nodes. Best of luck.
Thanks. Melatonin seems not to be the "wonderkind" it was cracked up to be. I stopped it and sweats are getting better.
Melatonin only works for me when I take a very small dose, around 0.2 mg by cutting up a 1 mg tablet. I also take tryptophan which is a big help.
I take 10 mg Melatonin an hour before bedtime each night. Works great for me. I've had two docs recommend Diphenhydramine (Benadryl), as well. However, what really works for me when I need to sleep is Costco's sleep aid 25 mg. of Doxylamine Succinate... problem is with Costco's pill I sleep well, but wake up a bit drowsy.
Benadryl, I have read, can increase chances for (or slightly cause, I forget) dementia over time. Google it. So can a lot of meds, but benadryl I recall in particular so I only take when I definitely need an antihistamine, not when I can't sleep although it can help as a sleep aid.
If you stop taking melatonin 20 mg “cold turkey” you might get a “rebound effect” where you have difficulty sleeping because your body is used to an external supply of melatonin and has not yet figured out that it needs to ramp up its’ own production. I’ve had better luck with Zopiclone or a tiny dose of mirtazapine when sleep problems arose. 🙂
Don't want to feel I am advocating for product, but I wear a fitbit and every morning check the following which hopefully lets me know if something like apnea is afoot: Resting heart rate, oxygen level, oxygen variation (which I think apnea causes), breathing rate, heart variation rate, time asleep in rem, in deep, in plain sleep, etc. Every so often one of those is off, but overall, it might be worth trying just to make sure you are sleeping well and if not, which of these might be off.
One more thing. I had a period of time where my legs would feel crampy -- and maybe restless? Whatever it was was uncomfortable, but taking calcium at night has seemed to help. If that doesn't, I would try magnesium instead. Few nights of trying won't hurt but it can easily be one of those type minerals. My sister has what you describe rather badly and I keep suggesting things to try (starting with go to a doctor) but so far, haven't had success.
I have similar issues off and on. Making sure I get plenty of exercise makes a difference. Listening to a guided meditation really helps a lot. One on breathing or a "body scan." I've listened to them so many times I can now do it without the guidance. Here's a sample. This is not one I use but will give you an idea. Breath control meditation also helps. Shortish breath in, long exhalation. (Inhale 4, exhale 8) Sleep deprivation is a bummer. I only take 3mg melatonin. I hope you can find something that works for you. I've also had some good luck with valerian root extract. But that can sometimes leave me feeling a little drugged the next day. I have an rx for Xanax and I take a half of a tablet when I wake up between 2 and 4 am. Many doctors don't like prescribing benzodiazepines these days. I hope you can find something that works for you! youtu.be/T5QoAXGSl_k
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