insomnia despite good sleep hygiene

[Pounds11]

thank you in advance for help. I got diagnosed with ET JAK2 in January and about a year prior I had terrible time sleeping. Does insomnia go with MPN territory? I do not have sleep apnea. Was tested. I was very anxious when first diagnosed but better now. My internist won’t prescribe prescription meds because I’m an old lady and she thinks I’m gonna get addicted or something. Who cares? I need to sleep. I have perfect sleep hygiene. Thanks for any help.

[EPguy]

I had Covid and long covid (first variant early 2020) as my MPN was becoming intense. So i did have trouble sleeping. But Covid is not your issue.

What is your issue is Dr not willing to Rx any treatments for your condition. Have you done blood counts? Likely your PLT is high with ET. Depending how high you may require treatment to control it. Seems you need to consult a specialist, at least a hematologist, and preferably an MPN specialist. There are resources here you can find or will likely hear about from others better informed than I to help find them.

The most common med, Hydrea, is not addictive, and neither are the other typical MPN meds. So no worries there if your specialist recommends that.

[Pounds11 in reply to EPguy]

Hi and I guess I wasn’t clear. I’m on hydroxyurea and under the care of an MPN specialist. My issue is my primary care Dr will not help me with my sleep issue. She thinks it’s in my head and not a side effect of ET. My local hematologist tells me to talk to her. A dead end. So I want to know if insomnia and loud tinnitus is a side effect of ET. I read back on old posts and saw Hunter’s response and that was helpful. I will bring it up again with my local hematologist. Thank you for any other insights. I take magnesium and have tried OTC sleep aids. They are not effective.

[EPguy in reply to Pounds11]

Sorry, I now see your prior post (I even posted in that thread) and see you've been on HU.

I have ET/PV, and worsened tinnitus is/was a definite effect from it. When I switched from HU to Besremi the tinnitus seemed to get better, episodes are milder and less frequent.

You seem clear that starting the HU lead to the troubles. If so you're "intolerant" of it and have a good reason to discuss IFN with your Dr.

[Wyebird]

oh yes, I nearly every night sleep with head phones in listening to Podcasts. ( bbc sounds)

Haha when I go through the reading list ( your dead to me) I then realise I haven’t listened to half of them🤣 zzzzzzz

Alternatively when desparate, I take over the counter sleeping tablet.

[DiveGoddess]

Pounds11, Sorry to hear your Dr. Does not understand your problem. I take sleep medicine for years. Worked night shift Nurse off and on for 31 years. I suggest making appointment specific for insomnia and stating you need a solution. Explain everything you do and at least request a trial of medicine to help. Sleep is extremely important to our bodies. Best of Luck!

[hunter5582]

Insomnia is a common MPN symptom. It is thought to be related to the overproduction of inflammatory cytokines. Sometimes additional help with sleep is needed. Prescription sleep aids are an option, but it is best to exhaust other options first.

Practice good sleep hygiene - You already did this

Address underlying anxiety - You already did this

Cognitive Behavior Therapy for insomnia

Complementary health agents to support sleep - (e.g. Valerian, Camomile, hops, Tryptophan, etc). Some of these come as teas. They can help.

Melatonin (supports good sleep but does not make you sleepy).

OTC Sleep aids (e.g. Diphenhydramine, doxylamine). Can help but be aware of cautions.

Prescription Sleep Aids - Note that hypnotic prescription sleep aids disrupt sleep architecture. They can knock you out, but you do not get quality sleep (e.g. Ambien/zolpidem). There are benzodiazepines that are sometimes used for short-terms, but they are addictive (e.g. Ativan/lorazepam).

Trazodone is used for long-term insomnia and is a different class of medication. It is also used to treat depression. It works very well for some people but there are some cautions that may be relevant.

Dual orexin receptor antagonists (e.g. Belsomra, Dayvigo) This is a newer class of sleep medication that work differently. It reduces the amount of orexin (stay awake chemical) in the brain. It allows for a more natural sleep.

After over 20 years with chronic insomnia I tried everything on the list above. Belsomra is the only thing that ever worked for me. There are intrinsic risks with the long-term use of a sleep aid. This has to be weighed against the detrimental impact of long-term insomnia. I made the decision for long-term use of Belsomra with support from my GP and the awareness of the rest of my care team.

I do regard the use, especially long-term use, os a medication for sleep as a last resort. I would always suggest trying everything else first. If all else fails, then my personal experience is that the dual orexin receptor antagonists are preferable to the other options. There is support for this in the literature.

Hope you find a solution to sleep well ASAP.

[Pounds11 in reply to hunter5582]

thank you Hunter. I have tried most of what you suggested. I will see my hematologist in the next weeks. My GP doesn’t seem to think Insomnia is a problem with MPNs. You help so much.

[hunter5582 in reply to Pounds11]

Sigh. Not surprised the GP does not know bout the link between MPNs and insomnia. Many docs know little to nothing about MPNs. Hopefully the hematologist can be more helpful.

[Mostew]

have a look at magnesium spray. Seems rubbing in to feet before bed can be helpful. Not tried it but maybe worth finding out about

[Pounds11 in reply to Mostew]

thank you. I will try anything. Docs refuse to prescribe any meds so I’m trying to go cold turkey. They want me to do Behavioral therapy for sleep at their clinic which I already do on my own. Oh well. Last night slept 4 hours. I do drink chelated magnesium before bed.