Suggestions for help for insomnia?

[ChattyPanda]

These days, as long as I get 9-12 hours of sleep, the rest of the day I’m quite energetic! For that, I am deeply thankful. But... I will sometimes lie in bed for 4 or 5 hours before falling asleep... which usually leaves me waking around 2-3pm. I just feel like if I could fall asleep faster, I could wake up earlier and have more of a regular life. I’ve tried melatonin. (I’m 59, PV Jak+, on HU 6 days a week.

[MCW22]

I'm pretty much the same too which is why I'm awake and answering your post. I don't have any answers. Usually after several bad nights in succession I will finally be so tired I get a good one. Rather than toss and turn for hours I just give in and sit up and go online to do something until I feel like I am ready to sleep. I bought some lavender spray to rub on the skin to aid sleep and relaxation but it felt so sticky and uncomfortable it had the opposite effect and kept me awake.

[ChattyPanda in reply to MCW22]

Thanks. I TOTALLY know what you mean! I relate completely.

[Tico in reply to MCW22]

Thats me exactly,instead of just lying constantly twisting and turning, I get up and either watch television or browse online until i'm ready to go back to sleep. I'm not so grumpy in the mornings that way! Atb,tina.🤗

[Wyebird in reply to Tico]

Lol I do housework. I’m not good at tidying up kitchen before bed . So if restless my kitchen is spotless. I’ve even packed for holidays in middle of night.

I’m quite relieved when it’s done as I actually find that a chore.

[Tico in reply to Wyebird]

Oh yes, i've actually done the washing up from the night before after leaving it in soak from the previous night. But generally i just throw my dressing gown on and watch television and read through the posts on Mpn voice until i'm tired enough to go back to sleep which is quite easy for me as I sleep on the settee and can't remember when I last slept in a bed! Atb,tina.🤗

[Wyebird in reply to Tico]

Weird I don’t recall being told sleeplessness being a symptom of MPNs

[ChattyPanda in reply to Wyebird]

According to patient assessments, 65.4% of MPN patients report insomnia [1].

[Wyebird in reply to ChattyPanda]

Thank you

[Marossi]

Sorry I can’t help you. I also suffer badly from insomnia and rarely manage to get more than 6-7 hours sleep (and that would be a good night!). I’m not sure if it’s the disease , the medication (I’m on Pegasys) or just the underlying anxiety of living with a chronic illness. It certainly doesn’t help with the fatigue so many of us feel anyway. Just a word of warning about melatonin: it can have the effect of increasing platelets so better steer clear of it if high platelets are an issue with you.

[ChattyPanda in reply to Marossi]

Yikes! Yes, I have high platelets, but I didn’t know melatonin can make them increase!

[Hidden]

I think many of us suffer from this very miserable problem - ? drugs, bone pain and /or understandable anxiety from disease. A previous post mentioned trying the 4-7-8 Breathing Technique which is easily found online and I have found it helpful - have to concentrate and not let mind wander. Also avoiding any caffeine after about 2pm - I haven't managed to do without completely, which probably would be best.

[ksos]

I wish I could give you a recommendation instead of just commiserate, but I'm like you and many others here -- hoping for 7 hours, lucky if I get four or five, and wide awake at the strike of 3:00 am. A couple of things that sometimes help: stretching and deep breathing before going to bed, some carbs before bed, reading when I wake up in the middle of the night until I fall back asleep, listening to a quiet story on an audio book (I've started Moby Dick a number of times). My doctor suggested Calm Forte as an alternative to melatonin; it is magnesium based and, like everything, it seems, works sometimes. Good luck! Kim

[MPort]

I too have insomnia in the last few years. I didn't know how long I was tossing and turning I was just weary knowing that if I woke my mind would start racing and once it began I couldn't ignore it. Then 2 things happened. I got a Fitbit and found it recorded sleep duration including waking times of 1 hr 50 or more. A bad night would be 2 or 3 hours. Then I signed up for Headspace just for daily meditation. This has sleep 'stories' and sleep music. Now when I wake up and if I can remember it before my mind launches I listen to the beach one. Next morning I can see how long and how often I have been awake. It has made a big difference, it doesnt work every night, but enough nights to really help. I think the daily meditation helps too. There is a yearly subscription for Headspace. I hope we can all find ways to improve our sleep..Mairead

[JackLina in reply to MPort]

The pillow spray that helps is called 'This Works' and it really does. You will find it on Ebay.

[MPort in reply to JackLina]

Many thanks Jack I will look into this.

[JackLina in reply to MPort]

You're very welcome. I hope it helps.

[socrates_8]

Hey Chatty Panda...

Can't help you as I suffer from sleep deprivation on a regular basis, (almost every night)... If I can manage two to three hours of uninterrupted sleep... Then usually I can just function to my level of normalcy... Which is Not So Normal I am afraid...

Anyways... some say meditation & yoga really help... DVD's work a little for me...

Best wishes

Steve

(Sydney)

[Mica11]

I spoke to my GP last year about this as I was becoming depressed with lack of sleep, despite trying all the normal advice, nothing seemed to work. I could barely function during the day. He put me on a very low dose of Amitriptyline 10mgs to start then after a week to 20mgs and I have taken it since. Back to getting my 8-9 hours and am able to function normally during the day. It is non addictive and some nights I forget to take it altogether. Still sometimes get the odd night where I struggle but I am much better. Maybe something to consider.

[Sweetlucy in reply to Mica11]

It is addictive. I'm on a Facebook group for getting off Amitriptyline. Withdrawal symptoms can be extreme. Taking it long term has been related to dementia. I take 50mg for sciatica. and want to taper off it.

[Mica11 in reply to Sweetlucy]

Odd then my GP assured me it wasn't when I asked him about it, he doesn't usually get things wrong. I don't like taking meds I can do without and shall definitely challenge him on this next time I see him. He did say when he put me on them that the usual dose was 5 times greater than I would require to help me get to sleep.

Thanks for the heads up!

[Sweetlucy in reply to Mica11]

My GP also said it was non addictive. I have an appointment this afternoon and will challenge this. A good pharmacist should know.

[Mica11 in reply to Sweetlucy]

Let me know what your GP says if you can....just as an aside, I was away abroad for a long weekend recently and managed to pack an empty box of these by mistake. I didn't take them for the 4 nights I was away and felt no withdrawal symptoms.

[Sweetlucy in reply to Mica11]

I asked my GP about addiction and it's link to dementia. She didn't contradict me probably because she didn't know. Anyway she prescribed boxes of 25 and 10mg so I can taper slowly. I suggested dropping 20mg a month. I'll start the first day of the month. What dose are you on?

[Sweetlucy in reply to Sweetlucy]

Sorry meant 10mg a month.

[Mica11 in reply to Sweetlucy]

I started on 10mg first week, then up to 20mg thereafter. I do sometimes only take 10mg for a spell just to see if I can still get to sleep and increase back to 20,g again if I have a sleepless night. Both classed a very lose dosage according to my GP.

I wish you well reducing you dosage and hope you can manage without problems.

[Paul123456]

I’ve recently started taking magnesium late evening. Many people are deficient magnesium. Think it is a relaxant/de-stresser

Also I have a good quality relaxing massage oil . At bedtime I squirt a bit onto both hands, rub into pulse points and then four deep breaths. When I wake up during the night, simply repeat the process.

Not had a bad night since, famous last words!

[ChelseaF]

I take magnesium and half of a tablet of doxylamine succinate. It’s a sleep aid kind of like Benadryl but it works better for me.

[JackLina in reply to ChelseaF]

That is exactly what I take Kirkland Sleep Aid. Not available in the UK but you can usually find it on Ebay from the states. I only take it on the night I dose and only half a tablet. It's brilliant but I try not to use it any other time. This Works pillow spray between times works really well.

[hunter5582]

I also have chronic insomnia, which I suspect is related to the overload of inflammatory cytokines that results from the JAK2 mutation. There is some research that supports this, but it does not seem to be well understood. I have found some things that help.

1. Melatonin improves the quality of sleep you get, but does not help you to fall asleep.

2. Belsomra (suvorexant) is the only sleep medication that has ever done me any real good. It works differently than the drugs that just sedate you (like Ambien) and it does not seem to disrupt your sleep architecture like the hypnotics do.

3. A Qigong meditative practice called the Six Healing Sounds is a non-medication approach that also really helps. Here is on on-line resource about this, there are plenty of others ashevilleacupuncture.com/si... . It is best to find someone who is knowledgeable about Qigong to teach you how to do this.

4. Another non-medication option is soothing sleep music that incorporates binaural beats. It does seem to help. e.g. youtube.com/watch?v=GpPIBqX...(Not working as expected?) .

5. Finally, often overlooked, is to practice good sleep hygiene. No blue screens, soothing activities, no work, no phone, following a calming routine.

I may soon have another thing to add to the list. The Integrative Medicine specialist I have been seeing has recommended a trial of low-dose Naltrexone. It is supposed to help with chronic inflammation. While I considering it for other inflammation-related issues - who knows - maybe it will help with this too.

Hope that helps.

[ChattyPanda]

Thanks everyone! And new comments are also very welcomed! You all have added quite a few things for me to consider, and even some new things to be wary of. I knew my MPN Community would come to my aid!! 🤗

[Peak-Moves]

Hello, I am having mixed sleep and don't know if its fatigue / getting over tired, drug side effects or what, and sleep has always been something I discuss with clients as a health professional! I've been reading / listening to a couple of great books on this. You may have already come across them:

The Circadian Code

amazon.co.uk/Circadian-Code...

Why We Sleep

amazon.co.uk/Why-We-Sleep-S...

They are both pretty up to date on the science ( a bit hard going in places unless you like it!), but with lots of things that are easy to try. Simply from listening to the Circadian code for a week I have made some adjustments.

- I love dark (90% +) chocolate but was having in the evenings - now none after lunch - high caffeine and theobromine another stimulant

- turning off all screens earlier (9pm for a 10pm target bed time!) (but there are also suggestions on how to reduce the blue light from screens if screens are essential for any reason

- getting out early in the morning for best dose of daylight - hard at the moment with miserable UK weather, but again consider daylight lightbulbs / lamps - I had one in a cupboard so got it out again anodising for an hour in the mornings when I'm working

- not exercising too late in the evening, or engaging with any activity the requires mental stimulation.

It also talks about medications and supplements (some mentioned in previous posts) .

Hope some of that might help.