Any suggestions on sleeping problems? What should be advisable to take?

[KYOTOLOVER]

As my husband was just recently diagnosed he has sleeping problems. Somebody told us to take CBD oil but we are unsure about it. Any suggestions?

[AussieNeil Partner Administrator]

Per the research covered in this post, healthunlocked.com/cllsuppo... "Our findings suggest that the drug might promote homing of lymphoma cells from blood into secondary lymphoid organs where they receive pro-survival signals. Therefore, this cannabinoid compound should be used with caution in patients with indolent leukemic lymphomas."

In other words, there is good evidence that cannabinoids in CBD oil encourage the movement of CLL cells out of the blood, where they are dormant, into the nodes and spleen, where they actively divide and send out cytokines that cause fatigue, etc. So you might think that the CLL has improved because of a lower lymphocyte/WBC count, while it's actually more active.

Neil

[Kiwidi in reply to AussieNeil]

We have an LBC forum next weekend and there is a presentation about attaining good sleep. It will be on You Tube soon after so will post the link on here.

It was a great presentation. I will post as soon as it is available.

[KYOTOLOVER in reply to Kiwidi]

That is very helpful. Thank you so much.

[KYOTOLOVER in reply to AussieNeil]

That is really bad news. Thank you for letting us now.

[Rando21 in reply to AussieNeil]

This observation about CBD oil has me thinking about exercise. It seems possible strenuous exercise may be able to force the CLL cells to circulate out of lymph nodes. Does that seem like a realistic expectation from what you know about lymph nodes and CLL? I guess the idea would be prolonging higher heart rates might dislodge the cells and put them into the bloodstream where they are dormant.

Is it possible massages or something like massages might help? Could it actually make the situation worse as they CLL cells may settle in a worse location?

[KYOTOLOVER in reply to Rando21]

Hard to know, but interesting observation. Thank you.

[Rando21 in reply to KYOTOLOVER]

It occurred to me that things like massages might also help to clear lymph nodes assuming it’s beneficial to do so

[KYOTOLOVER in reply to Rando21]

Good idea. Sure. Thank you!!

[ClassyLady3 in reply to Rando21]

I have SLL as my main prevention. I have had massages only from a massage therapist trained in lymphatic drainage. Her trained technique helped the congested lymph nodes all over my body to drain into my abdominal cavity and I always experienced relief. She also helps move stagnant lymphedema areas.

It is not a permanent solution and I would benefit from weekly lymphatic massage and drainage, but any time I am able to get it is well worth it.

[KYOTOLOVER in reply to ClassyLady3]

Hi again. Based on your kind recommendation I researched about lymphatic massage and it is really very beneficial. Thank you again for letting us know.

[KYOTOLOVER in reply to Rando21]

Hard to know, but interesting observation. Thank you.

[LeoPa]

I take 1 mg melatonin. But if I forget to take it I still sleep well.

[KYOTOLOVER in reply to LeoPa]

He will try it. Thank you Leo. I hope it will work fir him, for me it never did. But we are all different, so let's see.

[Bikram21]

I was diagnosed a couple of years ago (W&W) and was experiencing anxiety which affected my sleep. My dr gave me a prescription of Ativan (which can be habit forming and was only used as a short term fix) and I used it several nights a week. This allowed me to sleep and was a godsend at the time. Over several mths the anxiety eased… sites like this helped enormously and the sleep improved.🙏

[KYOTOLOVER in reply to Bikram21]

Yes, in the beginning the anxiety is at its peak. But with time, it will get better. Thank you so much. I am glad you got out of that phase. Thank you.

[Teemed]

Trouble going to sleep can be a symptom of anxiety

Waking up in the middle of the night can be a symptom of depression. Getting these symptoms after being dx is fairly common and getting meds prescribed by a MD during the adjustment period can be helpful

It’s a big initial adjustment but there is plenty hope

[KYOTOLOVER in reply to Teemed]

Thank you for your kind message. I agree, there is no harm taking sleeping pills during that time, gradually we will be better.

[Edalv]

Since I started taking 100 mg of R-alpha lipoic acid (R-ala) after dinner, I noticed my sleep quality has improved. ALA is an antioxidant and anti-inflammatory compound that is naturally produced in the body, but as with everything else, it decreases as we get older or have other conditions. As always, consult with your doctor before you try any new supplements, specially if you are taking a glucose lowering medication, since ALA also reduces the glucose in the blood. It may compound the effects of your medication. Peace, and happy restful sleep…

urmc.rochester.edu/encyclop....

[KYOTOLOVER in reply to Edalv]

Thank you, I will ask our doctor about it. Glad it works for you. Hope it will too for my husband.

[scryer99]

I would take a different approach than pills, unless your insomnia has been diagnosed by a sleep specialist as requiring medication. Habituation to sleep aids can make the problem worse over time, not better.

Sleep has a lot to do with other patterns - blood sugar levels, hormone cycles, heart rate while at rest, heart rate variability and overnight troughs, oxygen levels, tons of stuff.

I have had sleep issues and while some turned out to be medically caused, most were addressable with lifestyle changes.

A good phone sleep app can really help you measure and manage sleep and it will help you develop healthier sleep patterns. You can see the results over time. I’ve had good luck with SleepWatch but there are many. Pairing with a sensor (Apple Watch is one) will also help get better data and feedback on what is working.

Stuff that helps, or at least helped me:

- limit caffeine intake late in day

- limit eating in the evening

- moderate exercise, ideally in the afternoon

- limit alcohol intake

- consistent wake up time, no matter how tired you are

- consistent bedtime

- consistent bedtime routine, without screens / phone usage

- good sleep environment : cool, dark, quiet, good airflow

- weighted blankets

I sleep measurably better when I do those things, and can tell during the day if I didn’t do those things the night before.

Good luck. It takes time but improvement is possible.

[KYOTOLOVER in reply to scryer99]

Thank you for your kind response. Even more so, as my husband does not like taking sleeping pills and generally is more inclined to take softer, more natural approach. He already cutcoffeine and alcohol and limited sugar intake a lot. We will check SleepWatch, sounds promising. Walking in the nature helps him a lot too. Once he is ready to talk about his illnes with his friends and family it will be better for him. For now, I am the only person who knows his diagnose and I joined this support group so I can help him. I appreciate very much all kind support that you and other good people of this group are giving us.

[Saju21]

I have had good results with using bose sleep buds. Not cheap but what price good sleep? They do have sales and reconditioned occasionally- and they have a 3 mth guarantee so no risk if they don’t work for you. I agree good sleep hygiene needed but I am not perfect but buds still helping.

[KYOTOLOVER in reply to Saju21]

Thank you Saju. Did not know such things exist. Sure, worth trying.

[Stamphappy]

When I was first diagnosed, the anxiety was overwhelming. That was almost 2 years ago. I'm still in watch and wait. My drug free suggestion is get a pet. It may sound wrong because of germs a pet can carry, but the pug puppy we got has been so comforting to both my husband and myself. He is so worth the extra cleaning and care! Our vet helps us be sure he's healthy as can be and safe for me to be with. He keeps me active even when I don't want to be. He brings us so much laughter and love. You just can't put a price on that. With a cuddle, he draws my emotions upwards consistently. That helps me sleep. He sleeps on the floor in his own bed. A sweet little face first thing every morning and last thing every night with tons of cuddles in between.

I hope this helps.

[KYOTOLOVER in reply to Stamphappy]

That is so wonderful!! We too have a dog, but she is a typical country dog with long hair, a bit smelly being older, bringing all kinds of weird bones into the house so we do not alow her into our bedroom. But the rest of the day she is with us. I am glad that your adorable puppy brings you so much love and joy. Thank you for your sweet message.

[Stamphappy]

I don't know if you are religious, but this has also helped me sleep: At my brother's funeral, the priest said, "Everyday, we are given 100 blessings. We have only to look for them".At first, it was hard to concentrate on this. My first thought was our puppy. He had made such a terrific difference. Then I thought of faith, family, the place we live, the beauty in the world...it's hard to see when faced with cancer, a smile from a stranger with a kind "Hello"when you are the only one wearing a mask in public, the loving touch of someone you love, researchers, doctors, nurses, and everyone else involved in your care, and HealthUnlocked-my wonderful extended family. ❤️ The list is personal and ever growing. It gets easier every day 😊 Concentration on this concept draws you away from horrid way cancer tries to steal your happiness in life. Don't let it. Together, we are stronger. Best wishes to you both.

[KYOTOLOVER]

Your mesagge touched us deeply. As you say, the beginning is the hardest, one's mind is dark and blind to all those positive aspects of life that were here just until now. I wish my husband would open up soon to all the people that love him so much ( he really does have wonderful friends. but no family left) . I am doing my best so that it happens. We live in a very secluded place which is really nit good fir him right now. But we drive everyday to the woods or lovely seaside place where he feels much better. Animals were always his big love, so having our dog helps a lot. His heart was always full of good will and love for people and animals in need. Managed to save a friend who almost died because he was refused a liver transplant. Thanks to my husband he got it and is now well. Always ready to help anybody in any kind of trouble. So now it is the time that he let's others help him. I am positive it will happen soon. All the best to you.