Insomnia

Hi anyone suffering with insomnia that seems to be made even worse now with ET Usual sleep products vary, zopiclone and Tesco sleep aid not always effective, lm allergic to chamomile and other sleep tea. Any tips and advice most welcome.

[Hidden]

Hi have had ET for 6 years, and I love my sleep 😴 on the whole no problems at all. I am still working at 69 so probably that helps!! Ready for sleep after a busy shift. It maybe different when I retire?

[Deefen]

I do suffer from insomnia - not sure if ET is the culprit though? It used to be solved by regular, hard daily exercise - but even that doesn’t anymore. Taking strong cannabis oil before bed helps (if that’s legal where you are) - and prescribed melatonin (not the one you get at chemists or health food stores) works well - but it does leave me feeling a bit sort of dopey when I wake up

[Hidden in reply to Deefen]

Hi Im also a great believer in cannabis medicines but have been warned against its use because of its interactions with warfrin something to do with platelets? I agree health store melatonin had weird side effects not sure were to access a better product but thanks most helpful.

[Chaz1]

Hubby has Et/PV & has insomnia. He struggles massively with fatigue & can be on point of napping all day but doesn't ever get restful sleep & ends up so tired he doesn't sleep at night. He has tried lots of things, including exercise, trying to pace , have a set nqp & bedtime. All the other usual aids. He has just been prescribed a very mild anti depressant which I think helps a little. Still early days but he is now snoring so I've decamped to the sofa on a couple of nights as don't want to disturb him.

[Hidden in reply to Chaz1]

Hi Chaz all sounds so familiar insomnia effects my relationship too and lm grateful everyday l have for my hubby's care and fortitude. l haven't tried anti depressants yet and think l might give counselling another go. This is something l struggled with before head thrombosis and now ET just seems to make a good night's sleep even more elusive. All the best for the new year

Murina

[Chaz1 in reply to Hidden]

Massive impact on our relationship. He has just finished counselling which helped & made him realise he needs to sleep so Dr said the anti depressants would be best option. I'd rather sleep on the sofa knowing he's sleeping than being awake because he can't. He doesn't agree, that was an issue this morning as he wants me in our bed but I need sleep too. Talk to your Dr & see what they say.

[Scrollernut in reply to Chaz1]

I’m female, 77 and I could have written your letter about myself! Very frustrating especially on days when i can hardly wait for night to go to bed even after napping most of the day and napping, not napping, exercising not exercising, caffeine no caffeine....nothing seems to make a difference. I’m also on 225 mg Wellbutrin an antidepressant. I’ve had ET since February this year. Really aggravating.

[Chaz1 in reply to Scrollernut]

It's so very tough

[Hidden in reply to Chaz1]

Its blooming awful but we're all survivors here and this resource is so helpful,chin up love.Regards

[KentBee]

Yes suffer from insomnia but never associated it with Hydroxycarbamide or ET, I too, feel fatigued but am 70 so maybe just age .

[Hidden in reply to KentBee]

Thanks l too am in my 70s and need sleep more than ever zzzzzzzzz.Best regards.

[Wyebird]

Yes , I go through periods of insomnia. Sometimes I’m really tired and desperate for sleep other times I’m wide awake. On the wide awake times I get up and do house work. (I’m not good tidying before I go to bed) it maybe only for an hour but it’s usually enough to get me to sleep and then if I’m tired all day it doesn’t matter. The house is tidy. Once at 2am I actually packed for a holiday. Now that was really productive 😁. It was something I hadn’t been able to face due to fatigue and I only had 3 days to go. Other times, I put my headphones on and listen to BBC sounds or newly found SMOOTH radio ( uk station). On the odd occasion I do take a sleeping tablet. Also, hard work and exercise help.

[Hidden in reply to Wyebird]

Love smooth radio thank you really hopeful .

[Uzza]

Try magnesium.

Cheers,

Uzza

[Mica11]

Went to the Doctor about 2 years ago for this and he prescribed a very mild dose of Amitripyline. It worked well for a long time and I'm still taking it but have the occasional wakeful/restless night now but not enough to send me back to see him again. I do feel slugish in the mornings for about an hour after waking but I've got used to that. Recently bought one of those acupressure mats which is meant to aid sleep/aches and pains etc, have only used it twice for about 20-30 mins (takes a bit of getting used to) and slept like a baby both times. Check with your specialist nurse or consultant first though.

[Hidden in reply to Mica11]

Hi yes l have an acupressure mat how long do you use it for,you don't sleep on it do you,mine has plastic spikey bits most unsuitable for sleeping on.Meditations tapes are very helpful also sleep stories can help. Thanks

[Mica11 in reply to Hidden]

I'm at about 30 mins at the moment, I lay it on my bed, cover up and read my book. Yes, I think they all have spikes no matter what make. I find that I can hardly feel it until I move to get up. Just stories I've read about users falling asleep for a few hours while lying on it. I should imagine they would be lying very still or would really feel it if they decided to roll over! Ouch!

[Cja1956]

Funny you should mention that now. I have suffered from insomnia for many years. I do take something to help me sleep, but when I wake up I never feel refreshed. I also suffer from shortness of breath, so my hematologist referred me to a pulmonologist and I just had a sleep apnea test. I just got my results back, and it says that I do have obstructive sleep apnea. I always I thought my ET/MF and the chemo pills I take were the cause of my feeling so tired all day. I am praying that the sleep apnea treatment I will soon get will help me feel more energetic during the day.

[Hidden in reply to Cja1956]

How interesting could you say a bit more about how the way sleep apnea effects your sleep?

[hunter5582]

I have had chronic severe insomnia for about the last 20 years. There is some evidence in the literature that insomnia can be related to the overproduction of inflammatory cytokines related to MPNs. Based on my experience, I certainly think this is so.

The problem with many sleep meds is that they disrupt sleep architecture. You can fall asleep but the quality of sleep is poor. I also found this to be true with any of the hypnotic sleep meds (e.g. Ambien). Fortunately, I found a med that works well and does not disrupt sleep architecture. Belsomra (suvexorant) is a new type of sleep med that works differently. It reduces the amount o orexin in the brain, which is the "be awake" chemical.

Note that I generally do not support the long-term use of sleep meds, however, long-term sleep deprivation is even worse. I have previously tried everything else and practice very good sleep hygiene. In my situation the insomnia is biochemically driven and has required a biochemical response. For anyone suffering from long-term insomnia, I would recommend the following.

1. Learn about/practice good sleep hygiene.

2. Cognitive based therapy for sleep.

3. Learn the Six Healing Sounds (A Qi Gong meditative practice).

4. Try Melatonin (improves sleep quality but does not make you fall asleep).

5. Try some of the herbals like valerian, either in capsule or tea form.

6. If all of the above is not enough, move to a sleep medication. Based on my own experience, Belsomra is vastly superior to anything else on the market.

Hope that helps.

[Hidden in reply to hunter5582]

Thank you so much will check out the 6 healing sounds. Belsomra is apparently restricted in UK but undergoing trials, but will follow your advice and try some CBT.

[Mwalimu]

I have found that the amount of carbohydrate I have seems to affect my ability to sleep. Sallie

[Hidden in reply to Mwalimu]

This is interesting.Thanks

[Scrollernut]

Some days worse than others and nothing seems to help. It’s the worse about having ET although cutting back on Hydrea to ever third day (500 mg) has helped some. Was taking it daily then every other day now every third day. This has helped considerably but still have difficulty more days than not. I’m 77 so some could be age. And being isolated from so much isn’t helping. ❤️🌹spring hurry up!! 🤪

[Hidden in reply to Scrollernut]

Oh my dear l hear you, were also waiting for spring. l have been on Hydra for 7 weeks but have suffered with insomnia over 30 years , it was so much easier to deal with as a young women out and about, now in my 70s with ET and Jak2 and like others lm looking for new resources l was interested in your reduction in meds this sounds like a good thing.

👍

[Scrollernut in reply to Hidden]

So far so good with reduction on meds. Hope it continues as wasn’t feeling too well on more often. Best of the new year with everything. ❤️

[Hidden in reply to Scrollernut]

😊

[Hidden]

Great advice for my insomnia although buying sleep meds online is not something l would feel confident to do.Thank you though..

[Adlon57]

Speaking from experience, Tesco sleep aid, once or twice, but NEVER more than that, body gets immune to it very fast, and the body does not forget it if you try it again after long breaks! Something like Yoga or Taiji Qigong relaxes the system!👍

[Hidden]

Thank you lm allergic to sleep ad although l took it for years,at the moment lm taking Zopiclone prescribed sleep meds, not ideal but ok untill things begin to change for me.

👍

[MaggieSylvie]

Hi Adiewon2, I have MDS/MPN with thrombocytosis but also I have been suffering from insomnia really badly in the last few years, and not had a good quality of sleep since before I started secondary education - that's a lot of years. I recently changed GPs and my new GP put me on Pregabalin for my neuropathy (which doesn't bother me much) and boy, oh boy, the first day after starting this drug I had the best ever night's sleep, and feeling rested the next day. There are some side effects, but it's used for a lot of things, and if you can get a good night's sleep, it can relieve a host of other things, as sleep is central to our health. You could discuss it with your GP. Good luck.

[Hidden in reply to MaggieSylvie]

Ho Maggie Sylvia l had pregabalin for homeopathic pain but again found the side effects a nightmare. Paracetamol is my best friend so effective and no side effects. Insomnia has been the bain of my life but lm now convinced its linked to my ET and high 😩 stress.Glad to hear it's working for you though.

Thanks for feedback.

Adiewon

[MaggieSylvie]

I was diagnosed nearly three years ago, and don't believe I have had blood cancer for very long before that, but insomnia has been the bane of my life for much longer. I have recently given up Paracetamol, and wow! I was no longer constipated. The only thing is that I am constipated a bit and I don't know whether it's the calcium or the pregabalin that's the cause. But from the moment I took pregabalin, I slept like a log, despite fibromyalgia, osteoarthritis and compression fractures. I now know that I can go to bed late and will still have a good night's sleep even if I have to set the alarm to get up early. I just feel so much better in myself. The only side effects that I can feel are wobbliness and shaking of the hands/fingers. This time next week I will be on my maximum dose, so I don't know quite what the future holds after this. If you can't sleep it effects everything you do. I wish I had been given this drug when I was younger; I could have taken life by the horns!