Insomnia Help

[Nrl303]

I’ve been struggling with insomnia pretty bad lately & it’s been hard even taking a nap. I’ve been on venesection only & have normal counts, but still struggling with sleep. I tried taking a herbal tea which was working really well & saw that you shouldn’t mix passionflower and aspirin together. I’ve read on here that melatonin increases platelets, so obviously don’t want that. Been pretty annoyed by it so far because before diagnosis, I had no problems sleeping at all. Any suggestions?

[Swede]

I have slept badly all my life and I have also tried every thing under the sun...untill I went to France and found melatonin. I have not read or heard it increases the platlets but you might be right. When I mention it to my doc she said it was better that I could sleep than suffer tiredness, all the time. Also, I dont use it every night AND I CANNOT RECOMMEND ANYONE TO USE IT UNTIL YOU TALKED TO YOUR DOC! The one I have is a spray that goes on the buccal side.

[Whitehair51]

Try cannabis

[Nrl303 in reply to Whitehair51]

Thank you! I may look into some CBD products & hopefully it’ll help with sometimes waking up feeling aches and groggy.

[hunter5582]

Insomnia is a common MPN constitutional symptom; however, it can have other causes. Stress is a major contributor. I have had chronic insomnia for most of my adult life, worse in the last 20 years. In my case I have another medical condition (NF1) that also can contribute to insomnia. My form of insomnia is unrelated to stress levels, but stress does make it worse.

I checked two reliable drug-supplement interaction sites (professional-version ePocrates and Medscape reference.medscape.com/drug... . Neither shows an interaction between passionflower and aspirin. Suggest you look at the literature about melatonin impact on thrombocytosis yourself to draw an accurate conclusion.

I consult with an Integrative/Functional Medicine doctor when I have questions about complementary health intervention and how they interact with medications. Most doctors are not familiar with complimentary health interventions and are understandably reluctant to provide recommendations.

I have tried nearly everything there is to try. Ultimately, only one thing has worked in the long-term. I use a dual action orexin agonist (Belsomra). Note that I consider a sleep medication to be the last resort. Certain sleep meds can actually make the problem worse in the long-term.

It may be worth trying some of the different herbal sleep aids, Valerian, hops, lemon balm, chamomile, etc. can help. I did find tryptophan helpful. It really is best to get expert consultation on the use of complementary health.

fonconsulting.com/resources...

ifm.org/find-a-practitioner/

CBT for insomnia can also be very effective. This is especially true when stress is part of the problem. One of the elements of this approach is to focus on good sleep hygiene, which is critical to good sleep.

It is important for your MPN Care Team to be aware of the issue with insomnia since it is relevant to you MPN care. The MPN Specialist may also have ideas of what may help.

Wishing you all the best.

[Geminimumof5]

Hi, a good quality magnesium supplement can be amazing! Since I started taking it I sleep so much better, and when recommended to friends, they report back a great improvement.

Some guided meditation at bedtime too can be amazing!

Hope you find something to help soon,

Take care 😊

[Nrl303 in reply to Geminimumof5]

thanks for the reply, I’ve been taking the magnesium supplement CALM & it’s been great at making me feel super relaxed before bed, but I struggle with going back to bed some nights after waking.

[Anag]

I never read that melatonin increases platelets. I’ve taken it as a brain detox months at a time and saw no platelet increase in 5 years and I am monitored monthly. I take more than 20mg at a time. Some take much more for brain help. Above the 10mg point, there is no more affect on sleep, but the effect is on the glymphatic system (the normal way that our brain cleanses itself during sleep). I would just try 1mg, then 2, then 3mg. 3 mg is the usual dosage.

Stress is a big factor for increasing platelets period if you’re sleepless you have stress and I believe that is probably worse.

I also take passionflower when I’m nervous, but in drops. Are usually take away 10 drops that works for me. It’s much less than a normal tablet. It takes panic away, but it never really helped me sleep, just normalised me.

Hope to have helped.

Anag

[Aldebaran25]

After many years of struggling with sleep (for me it all started after menopause), which got worse with my MPN diagnosis four years ago, and the search for the magic formula that would help me sleep , as of the past year or so I have been clocking in some regular good nights. My only conclusion is that being on drug therapy for my MPN has helped . Both HU (initially) and now Pegasys. It was not an instant change, but it is the only factor that I can think of. I had two years of just aspirin and venesections (still bad sleep) , then went on HU for almost two years with now six months on Peg. A few months after being on HU sleeping improved and this trend has consolidated.

[Nrl303 in reply to Aldebaran25]

glad to hear sleep has got a lot better for you. It’s crazy to think about how this disease effects each person differently. I’ve heard a lot of people talk about their insomnia on Peg. However, maybe it’s just my brain thinking I should be doing something else to treat this other than venesections

[Cokopops]

Hello. I know how you feel. My latest find is Nytol Herbal. It’s “ Valerian root” . And also warm milk helps. I’ve got a prescription for sleeping pills but I ‘m told not to have those too often.. Anyway, do try this Valerian root and a mug of warm milk before bed. Think of babies, they sleep well with warm milk 😉 Good luck

[Nikon7]

I use Magnesium Glycinate/malate (120 Mg) about an hr before bed each night. My Mg level was checked every month with blood work as I was going through Besremi “ramp-up.” Mg was always normal. You might discuss Mg level with your Dr. Sweet dreams!

[Mica11]

E.T. here, I had problems sleeping a few years ago after trying more natural remedies that didn't help my GP gave me Amitriptyline. I thought it was only for depression but he said in low doses, taken an hour or two before bedtime it would help. I started on 10mg and had to increase to 20mg and it has worked well for me. Wasn't happy having to take even more meds but I have to say it works well for me.

[21Rosie in reply to Mica11]

Same here ! 25mg Endep at night has worked miracles and surprisingly stopped the itching too. What a bonus.

[kitttycat]

Hi my response to you just vanished - I hope you are not getting this twice.. I take magnesium because its good for you and has many health benefits. Its found in many types of food also. I have taken it for years because I am very interested in nutrition and health. If you take one in the morning, you will take a nap I am sure in the day and if you take at dinner time or in the evening you will rest well at night. My doctor told me to take it also. I am sure you will find it very beneficial

[kitttycat in reply to kitttycat]

Further to my note, I should add to check out with your doctor first, because I dont take aspirin I take blood thinners.

[Wyebird]

I have ET. I sleep nearly every night with headphones on. I listen to something on bbc sounds or the radio.

I love ‘your dead to me’

And’ the infinite monkey cage.’

Haha I sometimes have to listen 3 times because I’ve unwittingly fallen asleep x

[plum27]

I have been taking aspirin and pagasys/interferon and have been having trouble sleeping the past few years. At last visit my haematologist recommended I see my GP and get a prescription for malatonin. I haven't got the prescription yet so can't comment on whether it is effective but I trust it is safe.

[ainslie]

I have not heard of melatonin increasing platelets, you could always try it to check. It didn’t with mine although I only take 0.5mg as suggested by Dr Hertoghe the hormone doc. MPN allegedly affects sleep as opposed to venisection,I found Peg kept me awake more. If all else fails Trazadone is on the lighter end of the drug spectrum, allegedly non addictive but I am not convinced of that. Usually it doesn’t cause sides. Valerian helps some.

[Minu68]

hi, I struggle to get to sleep, and to get back to sleep after waking because of night sweats. I’ve recently started listening to sleep meditation apps…. Yet to hear the end of one…. There’s a few out there, ones I’m liking are The Mindful Movement and Sleep Cove, maybe these are worth a try?

[Rastavapa]

I would try cannabis as already mentioned , melatonin gave me terrible nightmares and messed with my sleeping patterns ,CBD alone will not be as effective as CBD combined with thc , it's perfectly legal for medical use if you get your medical card or prescription .The other herb I would recommend would be hops, make into a drink really helps with sleep also

Take it easy. Nick.

[Threelions]

Hi,

I thought I’d let you know that I sleep exceptionally well with ET. That said I’ve always slept well.

I guess the point of my post is to say that it is possible to sleep well with ET.

Just for information;

I never look at a screen or phone at length 1 hour before bedtime.

I read (from an old school book) or (as already mentioned before bed) & listen to music / podcast with headphones.

By far the most important thing I think is not to worry that you’re not going to sleep as you can get good rest by just laying still (this is where listening to music or a podcast can help to stop worry about not going to sleep).

Not sleeping (if not from obvious pain) is usually associated with stress so CBD & other things already mentioned could also help.

All the best 👍

Mark

[Nrl303 in reply to Threelions]

You’re right, mine is probably stress related. cause like you, I have always been a great sleeper. Thanks for the tip