sleep help

[Chihuahua1505]

thought I’d come on and ask anyone got any advice or had issues sleeping with jak2 positive. I don’t want to reply on medication if any natural remedies work. Thank you

[Mostew]

Have a look on Insight timer app. Lots of stuff to possibly help and inspire you.Yoga nidra is good . Find a voice you like. Lying down in bed being guided.

Make sure you don't spend time on social media etc from a couple of hours before bed

CBD oil can help. Good quality one . (Expensive though)

Don't eat late ....

Nice hot chocolate made with cacao ( NOT cocoa) honey and cinnamon and nutmeg

Or without Cacao . Just milk and spices.

Hope you find something to help

[Roxanne22 in reply to Mostew]

Thank you Mostew, just be careful guys with the cacao if you are sensitive to caffeine, as its quite heavy on this stimulant - one lovely bedtime milky drink is Golden Milk, a milk of your choice, ie dairy or plant - gently warmed with tumeric, which is a brill anti inflamm spice, a little nutmeg, cardamon, cinnamon, and sweet with honey if you like that, although best not to have too much sugar with an inflammation condition such as ours - just to be mindful, although a little won't harm!

[Mostew in reply to Roxanne22]

Thank you for reminding me of caffeine . I should have said… it doesn’t affect me and I find it soothing. I agree about a little honey . Good one has so many benefits unlike sugar.

Yes ,golden milk delicious.

[Roxanne22 in reply to Mostew]

Thanks Mostew I love that we are all sharing ideas of our best practices to nourish ourselves - have a great day good to be in touch x

[Mostew in reply to Roxanne22]

Yes , just what I was thinking .

Hope your day goes well to x

[Mostew]

Also meditation . In morning and evening If that appeals to you . Qi gong ..........

[hunter5582]

Unfortunately, many of us with the JAK2 mutation experience insomnia. This is thought to be related to the overproduction of inflammatory cytokines.

There are some interventions that can help.

1. Practice good sleep hygiene.

2. Meditation (I use a Qigong form - Six Healing Sounds)

3. Melatonin (can help improve sleep quality but not with falling asleep)

4. Some natural remedies can help such as tryptophan, valerian, hops, chamomile.

5. Cognitive Behavior Therapy for insomnia (can be very helpful).

6. Sleep medications as a last resort. Note that the hypnotic meds like ambien disrupt sleep architecture. Trazodone helps some people but not everyone can tolerate it. Benzodiazepines can be used temporarily but have significant risk of dependency. There are OTC sleep meds like diphenhydramine that can help but also have side effects. I have experience with all of the above meds due to long-term insomnia that was refractory to other interventions. The one medication that actually helped is Belsomra, a new class of medication - dual action orexin agonist.

Please note that I do not advocate the long-term use of a sleep medication unless everything else has been tried without adequate response. Part of the evaluation should also be a formal sleep study to better understand the nature of the insomnia.

Wishing you all the best and restful sleep.

[Swim360]

Hi,

The best and most simple natural remedy is controlled breathing.

Going to bed and getting up at a regular times is important.

Hydration is also important.

I simply lie on my back and relax and focus on my breathing. Breath through your nose (really important) in five out five, try to clear your mind thinking about your breath filling your diaphragm moving up into your chest. Move onto box breathing if you can't clear your mind, this is simply breath in for three or five, hold you breath for 3 or five, breath out three or five, and again hold your breath for three or five, repeat several times and then go back to relaxed breathing

I then turn onto my side and fall alseep

[Wyebird]

hi I’m Calr ET I have awful insomnia . It’s now rare for me not to sleep with headphones on. I’ve down loaded bbc sounds app.

I love it. I listen to mostly radio 4 documentaries current affairs, science and history. Love ‘sliced bread’ and ‘the infinite monkey cage’.

Because I’m new to it I find I’ve lots of episodes to catch up on. I usually find I’ve fallen asleep and have to revisit the episodes.

[Kari1961]

I had this issue until about 5 years ago.

I now take magnesium just before bedtime. Use a lavender pillow spray, and lavender oil on my wrists, and use a bedtime foot massage cream called Feather & Down - which contains Lavender and Chamomile essential oils. This works a treat... plus my bedroom always smells heavenly.

Hope you get some sleep relief soon.

[Roxanne22 in reply to Kari1961]

This is beautiful advice Kari and thank you for the reminder, sounds like you have created a beautiful sleep haven for yourself there. x

[Roxanne22]

Hi Chihuahua1505, I recently shared on here that I had bought a grounding sheet, on which to sleep and it has helped by making me feel as though I have reached a deeper sleep plateau, I have only been using about three weeks so will keep you all posted on how this affects over time. I am uncertain of which aspect is troubling your sleep, for example, night sweats. I have those but as I am an older girl I have menopause to cope with too, so never sure which is causing the sweats. It may be mind busy busy, in which case the yoga nidra, epsom salt baths, switching off phone and keeping it off after 9pm. being cool in your bedroom. also darkness, for example if you like in an urban environment invest in quality curtains or a simple blackout blind, you need darkness to create the optimum restorative sleep, sip herbal teas before bed - not the supermarket ones really, although they are better than nothing but for example ones by a good organic herbalist - I can recommend Dr Sallys herbal teas for sleep (orchardbarnhealth.com) I wish you well and may you be gifted the sleep you need - bless you. with Love, Sarah x

[Catbells66]

Hi, thank you for asking this question, as I sleep terribly, and hadn't realised it was a symptom of ET jak2 positive. I use a lavender pillow spray, and listen to relaxing sleep music I found on you tube .

I really hope you find something that helps with all the advice shared on this group.

[KLCTJC]

Thank you for posting this. I can fall asleep but can’t stay asleep. It really started after diagnosis. I am on one of the dreaded benzodiazepines, restoril. I gave up because during the week for work I have to slept and it helps. And if I go 2-3 nights without sleep I get a migraine. But it helps me get about 6 hours of uninterrupted sleep. I want to get off of it. And I try to only take it during the week. I am super interested in the new medication Hunter mentioned. May look into that. And I may try the lavender oil! I also bought a BedJet. This thing is awesome. Keeps you cool or warm all night. And bamboo sheets, love them. I am also like someone else I put in headphone and listen to an audiobook, but my issue isn’t falling asleep it is staying asleep! So if anyone has anymore advice let me know. I still wake up after 3-4 hours but I can go back to sleep for another couple of hours. If I don’t take anything I am up! I would tell you to avoid alcohol before bed. And if you do drink make sure it is long before bedtime. I plan to try and get off this medication but between me having PV and MS. I kind of just tried to accept help. I still refuse to take any OTC meds if sick 😆, but I am getting used to this new life. Went from 100% completely healthy young woman to all of this at once! So, hoping as I am still wrapping my head around everything and doctors finally say everything looks great see you in 3-6 mos I think I can sleep. My neurologist hugged me at my last visit saying he would make sure I would see my daughter grow, of course I was crying! I am pretty sure this contributes to my sleep issues. Wish you the best of luck. But I would tell you talk to your doctor and let them help you. We all need sleep!

[Barbiebreath]

My response does include an rx but only half of it. Perhaps the other half would be enough for you. I take 50mg of Trazadone along with 10mg of Melatonin. I have also taken a supplement called “Calm” in place of the melatonin. Good Luck!

Calm sleep capsule

[Airslie]

I’ve had good results from using Melatonin.. a liquid by Solgar. I’m finally sleeping better. Hope it helps you.

[kitttycat]

Hi Chihuahua, I have taken megnesium for years and can tell you it is wonderful for relaxation. I take magnesium at breakfast and I take it at dinner time and by the time I am ready to go to bed, I am ready to sleep. Its also good to keep away from any stressful situations as much as you can. The best you.

[Plate]

Hello, I have been talking 10 mg of melatonin an hour before bedtime every night. I have never slept so well!

[Island-Lady]

I am so sorry that you are having sleep issues. All of the above suggestions are good and what I would add is that sometimes something will work for a while and then no longer work, and you want to remember to then try something different. I have difficulty sleeping from the ET and it is not stress. I fall asleep easily, but then wake up during the night and often very early in the morning. I just keep trying different natural remedies which will work for a while. As others have said, magnesium is excellent for calming you and for helping you to sleep. I have often at various times used valerian, chamomile, relora,cbd oil, gaba and melatonin. I wish you the very very best and certainly finding peace and comfort within the difficulties is going to help with your sleep, so whatever things help you to relax and feel more like yourself are going to be helpful.

[PupsBestFriends]

I found that a time-release melatonin was very effective at improving my sleep. My naturopath gave me 5mg, but that was almost too much as I had a hard time waking up. I purchased 3mg over the counter that was just right for me.

A few drops of lavender essential oil on a cotton ball placed next to my pillow is also very effective. Be aware that it may cause amazingly vivid dreams.