Hello, all. I am post Et Mf and I was diagnosed with obstructive sleep apnea a couple of months ago. My hematologist had sent me to a pulmonologist to address my constant fatigue. He found I stopped breathing an average of 19 times an hour while sleeping and now I am on a CPAP machine. I have done some research and one article states that 30-50% of people who have ET or PV also have sleep apnea. I was just wondering if anyone else has experienced this? I’m having great difficulty adjusting to the CPAP because I have to wear a mask that pumps air all night long and it’s extremely uncomfortable and annoying. The doctors keep saying it takes time to adjust and to keep trying because sleep apnea is a serious condition. Thanks for any advice you can give me.
Sleep Apnea and mpns : Hello, all. I am post Et Mf... - MPN Voice
Sleep Apnea and mpns
I can't give any information about ET/PV and sleep apnea as it's my husband, who doesn't have a mpn, who has it. He was diagnosed finally after many years of problems at a sleep clinic 15 years ago and given a CPAP machine by the hospital. He is now on a second more sophisticated and quieter machine - the NHS upgraded it at a routine service appointment. The first few months were difficult and he would sympathise with your difficulties as he found it very uncomfortable and took it off a lot to start with, but perseverance paid off and now he uses it as a matter of course every night. In fact I don't think now he could sleep without it. His quality of sleep improved immeasurably and had far less fatigue.
He takes it with him as a matter of course when away from home. If you are planning any plane trips - if anyone can fly again in the present problems - I'd advise you to ensure you take it as cabin luggage as essential medical equipment. Also make sure you have a letter from your consultant saying it is necessary. You may already have had to get one for DVLA.
My husband had trouble with one airline who tried to put it in the hold. Also have an extension lead - it's extraordinary how many bedrooms don't have a plug near the bed which he found to his cost on one trip.
I hope you do manage to have success with it. Diana
Wow, thanks so much for your detailed reply and the travel tips. I will take all that into consideration. I’m in the states and my insurance requires me to use it at least 4 hours a night. Sometimes, if I wake up before the four hours is over, I just watch the clock until my 4 hours are up and then I just take it off. But I’m trying harder now to keep it on longer. We’ll see how it goes. Your post was very encouraging. Thanks again. All the best,
Cindy
Cindy - it's easy for me to say persevere as I'm not the one using it, but he says he just gradually found he was sleeping longer without taking it off. The DVLA I referred to is our driving licence authority and the hospital told him to report he had sleep apnea and was using the CPAP machine, so in a way he was in the same position as you are with your insurance company. Just what you don't need on top of post ET MF which I also have.Best wishes Diana
Sorry no knowledge to pass on, but lots of sympathy as I have many nights when I struggle with sleep. Added to MF fatigue, that's really tough for you. Jennie
Thank you, Jennie, for your kind words of support. I’m hoping that when I adjust to this mask, I will get a better night’s sleep and maybe it will help with my fatigue. Fingers crossed. Take care,
Cindy
My husband who does not have a MPN has sleep apnea. He sleeps so much better now than when he didn’t have a machine. Maybe you need a different style of mask ... that may be the problem.
Thanks, Cookiebaker, I did change to a new mask and it’s definitely a little more comfortable than the first one and I had my air pressure reduced, as well, just the other day. Hopefully, as you and the others have said, with time and patience, I will get through this next challenge.All the best,
Cindy
Hey Cindy... 
Sorry to learn about the problems you are having w/ Sleep Apnea...
Long before I was first diagnosed, I had always suffered from sleep deprivation, and I use to also wake w/ quite a start at times from lack of oxygen during those shorter sleeping cycles, which of course always had me on edge...
However, (and this is in my case), both the problem of 'Sleep Apnea & Higher Blood Pressure' dissipated as I became fitter through my dietary & exercise regime.
I used to have to take 'Coversyl' for my blood pressure, and thankfully, that is now no longer the case... and I was just trying to think when it was the last time that Sleep Apnea ever bothered me, (the way it used to), and I do not know the answer, only that I was diagnosed in mid 2016, and about a year later my lifestyle changed.
Once Upon A Time..., I was most partial to an evening's enjoyment of a fine grape blend w/ my meals... But all of that stopped once my diet changed... (?)
Sorry if I've not been much help here Cindy... and I do hope that you will find a solution to your problem very soon...
Best wishes...
Steve
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Thank you, Steve. I really don’t seem to have any other risk factors for sleep apnea, except for the fatigue which I always attributed to my mpn and fibromyalgia . But I was told a few times over the years to get tested and I finally did it. I hope this Cpap helps.
Hi. I was diagnosed with it in the 1980’s decades before my mpn. I actually thought it was depression because I had no energy or desire to do anything but try & get more sleep. It’s been a life saver in terms of my health. It’s a serious health problem that can cause death from heart attacks. I use an APAP & make sure if I generate too much pressure I start over & don’t exhale too hard. My mask is easy, Swift Pillows, which some can’t use if they’re breathing through their mouth. Ask your doc about that mask. Less confining. Definitely keep using it. Will really help you. Katie
Thanks, Katie. Apparently, since I’m a mouth breather, I have to have a mask that covers my mouth and nose. I did change my mask already and it is more comfortable than the first.
I was also diagnosed with severe sleep apnea. I stopped breathing 167 times during the night. It was awkward and uncomfortable at first but now I can’t sleep without it. It takes awhile to get use to it. I did have to change my mask to one I was more comfortable with. I saw where sleep apnea can cause your platelets to rise so don’t know if it’s et causing the sleep apnea or vice versa. There is some connection between the two.
Boy, you really did have it bad. I’m glad the cpap worked for you.
Good morning from the USA,I was diagnosed with ET-JAK2 in February 2018 following a heart attack. I started experiencing heart flutters upon rising and if I took a nap. My cardiologist sent me for a sleep apnea test and came back I had mild sleep apnea. I started on a CPAP machine about 6 months ago; I tried losing weight but did not lose enough:/ I have had great difficulty adjusting and was told to persevere as well. I feel I sleep better the nights I just say I am not going to deal with it. I will continue to try to persevere as others suggested and best to you as well BTW this is the first I heard about the connection between MPN’s and Sleep apnea.
Yes, I agree. I feel I sleep better without it but apparently, people who have sleep apnea wake up many times a night and are not aware of it. Right now, during my “adjustment period” I feel like my fatigue has increased tremendously, since the cpap is keeping me awake. Not happy at all.
I hear you! I said the same thing to my husband that I feel more tired when I use it:/
I have ET (diagnosed) and many symptoms of PV (treated with phlebotomy). I was diagnosed and treated for sleep apnea a few months before being diagnosed with MPNs.
I'm fortunate to be a nose breather when I sleep, so I use a CPAP with what they call a 'nose pillow cushion'. I also use a white noise machine. It helps me to not hear/focus on the droning sound of the machine in my head.
Before getting the white noise machine, I used a fan pointed away from me but very near my bed for 'white noise'. You might want to try a fan first to see if it helps. A white noise machine is better than a fan, because it has other sounds and settings and you can dial it into something that really works for you. You have to be a little experimental, but it really works!
With regular use of your CPAP and some forced patience (I had to make myself be compliant), you're likely to get used to it within a few weeks. I can say that for me, the difference in my sleep and level of fatigue has been profound.
Best of luck!!!
Thanks so much for all the advice. The white noise machine sounds interesting.
Hi Cindy - My husband was initially thought to have PV because he had severely high Hemoglobin (21). After many tests, the Hematologist is 95% sure he does not have PV and that it is being caused by sleep apnea. He was tested in December, and the results said he stops breathing 44 times an hour. We are STILL waiting for insurance to approve his CPAP machine so I don't have any advice as far as how he's managing with it unfortunately. Hard to believe they're taking their merry time given how severe his sleep apnea is. And, equally ironic is I have really good insurance. Anyway, we have been told by his Doctor that this CPAP machine will change his life and increase his energy. He really doesn't need more energy; he runs circles around me and I'm 5 years younger. But, resolving the high red blood count and worry of a heart attach would obviously be great. We have friends that have a newer CPAP machine and have no trouble at all sleeping. Hope he has better luck soon with the new machine.
-Valerie
Sorry it’s taking so long for your husband to get treated. I hope everything gets resolved soon.
Hi Valerie- my husband had his old CPAP machine upgraded by the NHS - we're very lucky in the UK that this is free. The new one is almost silent. So much so that the first few nights he used it I , the non-user, woke up to check he actually had the mask on. I had also got used to the constant background noise like him and actually found it reassuring when he first got it. Hope your husband gets the machine soon and a nice quiet one! Diana
Thanks. We're hoping to hear back soon. We're not as fortunate regarding the cost. The sleep study itself was about $5,500. After insurance, our cost was about $1,200. I can't imagine what the actual machine will cost. Healthcare affordability has gotten absolutely out of control here in the US.
Hi Cindy,
I have ET and did suffer from apnea. In the sleep study they discovered I only stopped breathing when on my back. It turned out my tonsils were enlarged and would obstruct my airway when I lay on my back. Following a referral to an ENT consultant, they whipped my tonsils out and my apnea was immediately cured. This may not be relevant to you but it might be worth asking the question.
I hope you're getting on better with your mask. I know that the brief period I spent using a CPAP was difficult but worth it for the benefits.
Good luck!
Thank you, Generalcake. I’m still getting adjusted to it. I find it wakes me up a couple times during the night so then I end up taking it off. I try to get in around 4 to 6 hours a night. It is helping me with my breathing issues I had during the day and my fatigue. So I’m gonna keep trying. Thanks again for your advice. I’m glad you found relief.
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