Sleep apena

[Debbs73]

Hi was diagnosed with sleep apnea over a year ago. I went to the Drs a while ago as i was keeping my husband awake with my night time noises. They would be anything from screaming, shouting, groaning, singing and other noises. I'd been a few times to see the gp about it but kept getting it's your medication. So I'd seen a different gp this time who took me seriously and said that's not normal. Fast forward to being seen at the sleep clinic by a Neuro surgeon. Had a sleep test done over night at the hospital turns out I have sleep apnea and having over 50 episodes a night, and my leg movements were roughly the same. It was nice to be taken seriously and not made to feel like a fake. Don't get me wrong I'm not pleased I have it but was nice to put a name to my problem.

[BonnieSue Dream Team]

Hi Debbs,

Congratulations on finding your problem diagnosis!! Are you now using a CPAP machine? Mine makes all the difference for me...no more nighttime disturbances! I don't wake struggling to breathe anymore, nor, I'm told, do I snore anymore either. What welcome changes!! I hope you're getting along well now.

[Debbs73 in reply to BonnieSue]

Hi BonnieSue. Yeah I'm using the cpap machine. However unlike yourself I'm still having the same problems. As I've wrote in previous statements my husband and I sleep in different rooms. Which is. crap. I'm pleased that you are getting some benefit from it.

[BonnieSue Dream Team in reply to Debbs73]

I'm sorry to hear this. Do you have jerking in your legs? Or in your whole body while trying to sleep?

[Debbs73 in reply to BonnieSue]

Yeah I get the jerking in both and also my hands. I'll be sat in the couch when all of a sudden my legs will jump or my hand will jerk, which is damn frustrating when I'm writing ( typing) on my phone. 😪. Like you said my cpap machine is also noisy it sounds like I'm in a wind tunnel.

[krazeeartist in reply to Debbs73]

Could you could be suffering from Restless Leg Syndrome?

[Debbs73 in reply to krazeeartist]

Hi. Yeah I do suffer with it. When they did my sleep test and they found out that I have sleep apena that's when they found out I have RLS.

[BonnieSue Dream Team in reply to Debbs73]

RLS--that's what I was getting at, also PMLD--do you have that, also? I took the time to read a lot of your last posts to try to find out these things but whether you may have PMLD still isn't clear to me. I ask because you've described sleep behaviors that disturb your husband like singing and others that maybe, maybe PMLD would contribute to, I really am not sure about that. I need to research that more.

How are these behaviors that disturb your husband doing now? Still present or resolved? Has any doctor ever been able to explain or diagnose those behaviors?

I have a ResMed CPAP which is totally silent, what kind do you have right now? Even my very much older CPAP machine from before this one was silent. You might need to switch to a different machine if it's noise is still an issue. I wish you the very best with this problem!! 😀

[Debbs73 in reply to BonnieSue]

Thankyou for your reply, and taking the time to go over my past posts and giving me your opinion. That's very sweet of you.

No PLMD has never been suggested. However I've now researched it and it does sound a lot like what I have, not saying it is same but mirrors some of it. I'm seeing my neurologist on the 11th off October so I will definitely mention it to him.

My husband and I now sleep in different rooms now. The noises, jerking, screaming singing etc was just disturbing his sleep and not fair when he has to goto work feeling tired all the time, an my sleep as he had to keep telling me I was making noises. There was one time my son came home after work and hee said he'd heard a blood curdling scream and came rushing into our room to see if I was ok. I didn't remember anything the next day.

Think I'll get them to check my cpap machine when I go . Mine is a resimed air sense 10 elite.

[BonnieSue Dream Team in reply to Debbs73]

Oh, yes, I'm very sweet, my fiance calls me "sweetie" often, except when he's calling my behavior sassy. 😏 We both enjoy my sassy side, which I'll endeavor NOT to show you! 🙄 Now, about you...I really felt bad for you and your hubby both when I read about your nighttime noises and how you 2 couldn't sleep together. That's why I would like to see you get the help you need.

I'm so glad we talked before your neurologist appointment. Hopefully, s/he will have some good ideas. Do you see a pulmonologist for the CPAP and sleep apnea maintenance and checkups? That's the doc who handles these problems where I live. The pulmonologist has staff that are knowledgeable about the CPAP equipment and I see them 1st, 30 minutes prior, before actually before seeing my doc for my checkups. So if your neuro can't help you this type of doc plus staff may be able to. (I know...goody!...another appointment!)

I was thinking that your sleep apnea testing should maybe have told you if you had PMLD also, but I ran across this statement in Wikipedia:

Moreover, diagnosis of PLMD cannot be used when narcolepsy, restless legs syndrome (RLS), REM sleep behaviour disorder (RBD) or untreated obstructive sleep apnea (OSA) is already diagnosed, since abnormal movements during sleep are frequent in these disorders.

Wikipedia has a lot to say about diagnosis and treatment, too, but I won't go into it here. You can look it up at your leisure if you desire. Funny about your iron levels being high, not low, as seen in this disorder. Also...I have the exact same CPAP machine as you do. It makes a minor hissing sound where the air goes into my nose. Not enough to disturb my sleeping partner. If the nosepiece moves out of place, that's when it sounds like a windtunnel. So, it's only loud when the equipment is not correctly in place on my nose. I have the nasal cannulas only, no mask. Maybe this info can help you, idk.

I wish you the best with this ornery problem!!! ☺️💜👍

[Debbs73 in reply to BonnieSue]

Hiya. I've just realised that your from the USA. Have you and your partner lived there most/ all of your life. If you don't mind me asking how old are you? An have you suffered with sleep apnea for a while.

This damn sleep apnea is a pain in the arse for my relationship. With both of us having to sleep in separate rooms.

No I've never seen a pulmonolgist. Just had to Google it as never heard of one before. Lol 😃.

The reason that my iron levels are high it's I have a blood disorder that's called genetic haematomchrosis which was passed down to me by one of my horrible parents. Not sure which one my son had to be tested but he's ok. Itwas a blood test that showed my ferratin levels were through the roof had numerous test done before they found out. So I have to have regular blood tests taken to check my level and if if too high I have to have a venesection done where they take around 400mls of blood from me. But it just gets thrown away. I did ask my consultant out of interest if they could use it but would be to cost effective to do, but did say if it was the U.S. they world flush it and re use it.

I'm under the care of my consultant at the Neuro sciences of sleep clinic. Whom i see and also the care of the nurses whom look after me and my cpap machine. I'm under that many consultants for so many different health issues i get confused. The machine I use is the one where it goes over my nose. You seem very knowledgeable are you from a medical background.

Takecare debbs.

[BonnieSue Dream Team in reply to Debbs73]

Hi Debbs! Yes, I'm an old lab tech with years of experience but haven't had to work for a long time. I do like to research puzzles, too, and your behavior is a puzzle but I now think I have your answer!!! I'm going to be 63 yrs. old and young shortly...a few weeks from now. Sleep disorders run in my family...but not your disorder. Still, that helps to make me more interested. My mom is like a gymnast when she sleeps!

I've lived all my life in the US and all I can remember is living in Florida, the state I live in, 5 minutes from the beach. I love the water and have always lived nearby. I met my partner and fiance on this site...both working here as volunteers. Isn't that amazing? He moved here from Ohio, about 1100 miles north of here, to be with me.

I've had sleep apnea for a long time...maybe 20 years. It sounds like maybe you're with the right doctors for your country's medical system. I'm familiar with hemachromatosis due to my lab background and having been licensed in blood banking and hematology. I guess it's a big nuisance having to be venesectioned regularly. But get this...I think I've found your symptoms in another disorder...REM-Sleep Disorder Behavior. Here's what I've learned:

From the National Sleep Foundation:

For most people, dreaming is purely a "mental" activity: dreams occur in the mind while the body is at rest. But people who suffer from REM sleep behavior disorder (RBD) act out their dreams. They physically move limbs or even get up and engage in activities associated with waking. Some engage in sleep talking, shouting, screaming, hittting or punching. Some even fly out of bed while sleeping! RBD is usually noticed when it causes danger to the sleeping person, their bed partner, or others they encounter. Sometimes ill effects such as injury to self or bed partner sustained while asleep trigger a diagnosis of RBD. The good news is that RBD can usually be treated successfully.

Sometimes they begin by talking, twitching and jerking during dreaming for years before they fully act out their REM dreams.

They go on to tell how it's diagnosed, treated, etc. Lots more info at this site:

sleepfoundation.org/article...

Here's what someone else on this site said about having it:

"I have REM-Sleep Behaviour Disorder. It is often a non-motor symptom of Parkinson’s Disease (as mine is). The body does not go into effective paralysis when you are dreaming and you act out your dreams. It is easily treated. I am on 1mg Clonazepam taken before bed. The symptoms can be physical and verbal - mine where mainly physical with a thrashing of arms/legs. This was not good for my partner! I did not wake-up during episodes but on one occasion did and was banging the wall at the back of the bed with my fists."

Debbs, you're not alone!! And doesn't this sound like things you do? And it's easily treated! I took clonazepam (and 1 other benzo drug before that) for years...about 28 total for a different problem and never became addicted, stopped it when I didn't need it anymore. Maybe you could try it if diagnosed. But...I have to tell you...there is a risk that you could possibly have memory problems after many years of use of a benzo. It's happened to me but not my Dad, so it's not a sure thing. But to sleep normally and with your hubby might be worth the gamble. Also, you could see if there's an alternative medicine. It seems like that might be possible. Anyhow, you could bring this up to your Neuro doctor, couldn't you? ...for your upcoming appointment. Best wishes!