PV: sleep study

[MancMermaid]

Hi!

I'm 14+ years diagnosed with secondary PV. I've just had my first appointment at The Christie, Manchester (v long story). As well as other investigations (blood tests) I've been referred for a sleep study to consider sleep apnoea.

Just wondering if anyone else has experienced this/gone through the same?

TIA x

[hunter5582]

I have done asleep study due to the chronic insomnia I experience. I do not have sleep apnea and my insomnia is not the result of breathing interruptions. Doing the sleep study is an excellent idea with secondary polycythemia. Sleep apnea is a known cause of secondary polyxythemia which can be successfully treated.

[JP1952]

I am on PV and have had on insomnia at various points throughout my life. At the moment I'm awake from about 4 AM every morning so added to the fatigue I feel rubbish a lot of the time. However, I do not have sllp apnoea. I would be very interested in hearing the results of your referrals.

Sorry, I am aware I haven't helped you at all. Good luck with upcoming investigations.

[Leveret20]

I was diagnosed with sleep apnoea 12 years ago - long before the ET raised its ugly head.

In my case, I know the sleep apnoea is related to an inherited connective tissue problem, and not connected to the MPN.

If there is any question of sleep apnoea it is well worth investigating. I now have a CPAP machine that I use every night, and it changed my life - I stopped falling asleep whenever I sat down. It took a while to find the right set-up and a mask that I could tolerate without feeling claustrophobic, but we got there. Do go ahead and get tested - it is well worth it.

[Ovidess]

I will pipe in too: I have had insomnia since before ET/PV, and was tested for sleep apnea. Negative. I think it is related to post nasal drip, really hard to eliminate.

I'm trying a CBD/CBN formula for sleep now--helps a bit. Like JP1952 I often wake too early. Truthfully, many of my post and premenopausal women friends have this pattern, and don't even try to fight it. But I hate the afternoon lethargy and will RESIST RESIST RESIST. (Whoops, no politics on this site...)