Sleep Apnea and ET/Jak2+

[MiltonBradley]

Does anyone else suffer with Sleep Apnea that has ET/Jak+? I have been diagnosed with sleep apnea and been prescribed a CPAP machine and I am resisting using it but wonder now if it is necessary. I have been experiencing great fatigue lately and wonder if the sleep apnea could be the culprit:/

[DJK12]

There was a post and a number of replies about sleep apnea on this forum about a month ago which might be helpful as members with sleep apnea discussed it. If you use the search button it will show up. I don't have it but my husband (no mpn ) does and uses a CPAP machine successfully - helped his fatigue considerably.You've no doubt been told, as you've been prescribed it, that if you are a driver you have to declare the diagnosis to the DVLA and your insurance company. Diana

[MiltonBradley in reply to DJK12]

I am in the USA and was not told by my pulmonologist that I had to report to DMV:/ Perhaps, because I was diagnosed with a mild form.

[Wyebird in reply to MiltonBradley]

Given the above reply I think you should check with your insurance. It would be awful if you wee in an accident and found out your insurance was invalid because of not using/ declaring it.

[MiltonBradley in reply to Wyebird]

Thank you!

[Cja1956]

Hi, I posted a similar post not too long ago. I was diagnosed with sleep apnea in February and also have a cpap machine. I have post Et Mf. I’ve had great difficulty getting adjusted to it. My hematologist referred me to a pulmonologist in December because of my extreme fatigue and the test found I stopped breathing 19 times per hour. My insurance required me to use the machine at least 4 hours/night for 30 days, so sometimes I just yank off my mask after the 4 hours. But I have noticed a slight improvement in my fatigue and I had a chronic cough which seems to have improved. I was told it was dangerous for me to stop using it, so I will continue.One tip I learned is to put on the mask a half hour before bedtime, to get used to it. Also, it makes my lips dry and my nose stuffy. So I put Vaseline on my lips and use nose spray before bedtime. I also bought a special pillow which helps keeps the mask in place, when you turn in bed.

You should at least give it a try.

Good luck.

[MiltonBradley in reply to Cja1956]

Thank you! I have used it more as a result of all your replies and your suggestion of at least 4 hours has helped tremendously

[Cja1956 in reply to MiltonBradley]

Glad to hear that. Thanks for letting me know.

[Wyebird]

I understand the being it’s of a cpap are enormous. Go for it.

[Wyebird]

Should read ‘wearing’ a cpap

[Generalcake]

I'm sorry to hear about your diagnosis, sleep apnea is rubbish. I suffered from both sleep apnea and ET but was lucky to have my apnea resolved through a tonsillectomy.

I completely understand why you might resist use of a CPAP but you should be aware that in the long term apnea is linked to increased risk of diabetes, stroke and heart problems. The CPAP should help with your fatigue but will also help mitigate the long term effects.

Also, as others have discussed, I was told I couldn't drive until it was demonstrated my symptoms were under control so be careful with that.

Good luck! I hope you can learn to get on with the CPAP. My mum also has apnea which was undiagnosed for years, the CPAP transformed her life once she got used to it.

[MiltonBradley in reply to Generalcake]

Thank you! I have not had tonsils since the age of two so that is not the issue. I struggle with the benefits because some times I wear it and I feel fatigued the next day. I used it last night and have tremendous fatigue today which may be the ET:/ As a result of everyone’s encouragement I have only missed a couple nights in the month of May.

[Pte82]

Your Sleep Apnea and ET could benefit from curcumin as anti-inflammatory for both and as a JAK2 inhibitor and STAT3 blocker for ET. A high absorbable form such as curcuWIN or a liposomal offer the best delivery. Also research forms of thiamine such as sulbutiamine or a TTFD form such as Lipothiamine that are more efficient passing through the blood/brain barrier and thiamin's role in brain function, Sleep Apnea and creating ATP. It's important to know antaganists of thiamine and the importance of magnesium in converting it to it's active form. Always consult your health care professional before using any supplement

[MiltonBradley in reply to Pte82]

Thank you for your suggestions

[Maymagic]

Wondering why you are resistant to use a CPAP. I was diagnosed with Sleep apnea when I was 28, and then ET at 30. I am not the "typical" sleep apnea patient to I had to ask to be tested but I was SOOOO fatigued that I was willing to try anything. It made the world of difference for my fatigue, my foggy brain and concentration, and joint pain. I would recommend giving it a try for a while and seeing if it helps.

[MiltonBradley in reply to Maymagic]

I am resistant because it is not comfortable and the nasal pillow causes sores and I just do not see that I am more rested the following day:/

[Auggie17 in reply to MiltonBradley]

There are dental devices that you can wear that can take the place of a CPAP machine. I have had one since 2016 and it works! Check with your dentist.

[mbr8076 in reply to Auggie17]

Thank you, Auggie17 I have totally given up on the CPAP and am considering the dental device. My dentist actually mentioned it