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Waking up with sensation of not breathing!

Hi gang, hope everyone’s doing ok.

For many years, off and on, I’ve had this thing where just as I’m going off to sleep I feel that I’m not breathing and jolt myself awake in a panic. Sometimes it’s what’s known as ‘sleep paralyses’ where I can’t move my body at all, but I’ve taught myself to move my fingers which wakes me up.

A couple of times recently I’ve had a much more alarming sensation… in fact I had it last night.

I wake from a deep sleep with the sensation that I’m not breathing. I actually have to sit up and gasp for breath. Frightening… although strangely enough I got straight back to sleep.

At the same time it’s like there’s a torch shining in my eyes flashing on and off.

I’ve read about sleep apnea and about stomach acid causing the problem, but I have no sensation that my throat has closed up or no acid taste in my mouth. It just feels like my body has forgotten to breathe.

I dread the idea of going to a sleep clinic and being wired up for tests… and have such trouble sleeping in a strange bed… but it seems to diagnose sleep apnea that’s the only way.

Any ideas? Anyone experience this?

Thanks all.

(Second time I’ve typed this post out. First time my ipad froze and I lost the post. This time I’m typing in ‘notes’ and will copy and paste!)

Pat xx

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Hi Pat,

i get very similar,over the years ive had it happen quite a few times,i feel that my problem is that ,you know the part of your brain that takes over the breathing while we sleep,well i think mine sort of malfunctions,

as i find it happens when i am dropping off to sleep, when i first had it happen,my late husband rang our dr as i thought i wasnt going to be able to breathe at all.i went into a real panic over it,but i sort of got used to it,

thankfully it doesnt happen too often,like everything else with ms you learn to cope with it,the dr said it was a panic attack but i know it wasnt,i knew it was the ms.i have had panic attacks in the past,but this is nothing like one.

when i mentioned it to the neuro he said although it can happen it was rare for breathing to be affected,and that was as far as i got with it.

J x

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Scary or what? My husband has obstructed sleep apnea and listening for him taking his next breath is hellish, its worse when he drinks alcohol. He does nothing to help himself - a long story which I am not going into. The CPAP machine with cold air gave him sinusitis AND the sound of the machine was louder than the snoring. For people that can tolerate the machine the improvement is miraculous, I wish you luck Pat.M

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Pat I have sleep apnea and wear a nose air blower thingie and sleep fine the test was wear a thing on my finger over night and from that they said I was awaking from sleep 32 times an hour now I wake up refreshed unless like yesterday we had all my birthday stuff and I am still knacked.

Don

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Thank you guys.

Mrs J… I used to have panic attacks too and like you I know it’s not that.

M… thanks. I don’t drink alcohol anymore so it’s not that. I don’t know if I snore as I live on my own.

Don… that’s SO reassuring to know there’s a test for it I can do at home. I was reluctant to go to GP as I thought they were bound to send me to sleep clinic and quite honestly I’d rather go undiagnosed then spend a night wired up in hospital.

I think I will go to GP and see if I can get it sorted. Last night’s episode has left me feeling nervous about it.

There’s loads about it online so it’s quite common which I actually find reassuring.

Pat xx

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Hi Pat

Occasionally just at the point of dropping out off I have had this, but a couple of times it happened when deep asleep, and I wake up gasping for breath, and also my heart beating fast. Really scary, but had no idea was ms related,never told the gp either, luckily does not happen very often.

Dons suggestion sounds like a good idea, have a word with your gp, let us know what they say.

Hope things pick up for you Pat, b****y ms has put you through the wringer of late (((((hugs))))).

Pam x

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I hope your GP is able to help it sounds very scary. I also live alone and if something happens during the night it seems so much worse knowing I’m alone.

Jan x

PS My iPad still freezing too

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Thanks for lovely message Pam.

I think I had a few years with very slow progression & got so used to it that this past year has been a bit of a shock. My MS has really progressed. I hardly seem to do much at all now my fatigue is so bloody awful, mobility worse, cognitive stuff worse… you name it… but I have my friends on here and that means so much.

I’m going to see GP about the breathing thing… from what I’ve read on internet it could be MS but could also be anxiety. I’m sure the neuro with say anxiety… he doesn’t seem to think anything is MS!

Thanks again Pam and hope you’re doing ok.

Pat xx

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Thanks Jan.

Nice to know I’m not the only one living alone… well I know there’s loads of others of course and normally it doesn’t bother me, but sometimes I have a wish for someone who would make me a cup of tea!

Jan did you do the Apple 8 update? I did and wish I hadn’t. Lots of small problems with it… googled it and internet is buzzing with people who are having problems.

Take care… us singletons have to stick together!

Pat xx

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That sounds very scary and Pat I am sorry you’re MS has really progressed in this last year. I hope your GP can offer some help.

Best wishes J.

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I did the update and things have been going wrong ever since, i find it usually freezes when I’m deleting so I try to remember to copy before I delete a word, yes you’ve guessed I always forget.

I’m the same as you living alone doesn’t bother me at all, it’s when I have a major decision to make I wish I had someone to share it with, oh and a cuppa now and again would be good

Hope you get an appointment with your GP soon, we can always get an appointment at our surgery but not always with your own Doctor.

Jan x

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Hi Pat and Jan,

I haven’t done the iOS 8 update thingy on my iPad …I was strongly warned against doing until the creases have been ironed out, however, I am also getting problems with freezing…and not just on this site!

Nina x

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Sending you a nice cup of tea PatI have to agree my MS has progressed faster lately, may I say insidious b££tard? we’ll have a nice pot of tea together - there’s not cake smiley any moreTake care M

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Thanks M. That’s a lovely cup of tea!

I read on internet that the breathing thing is worse if lying flat… I usually sleep with 1 pillow… last night I slept with 2 and slept without any breathing panic.

Also I’ve got into the habit of taking a paracetamol at night… and that’s on top of a 25mg Amitriptyline… so last night I didn’t take the paracetamol. Took a couple of hours to get to sleep but I want to break that habit in case that’s causing the problem.

If it’s not one damned thing it’s another!!!

Have a good day M,

Pat xx

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Heres a virtual chocolate chip cupcake i baked on sunday,to go with the cup of tea that was made for you by M … they are rather yummy,im not bad at baking.enjoy lol…

J x

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Co-incidentally I spoke to my Mrs about sleep apnoea this very morning. For a while now I’ve had the sensation of partially waking a needing to take a gasping breath. Lately it seems to me I speak out loud at these times, usually just a few words which from the outside would seem unconnected nonsense, but from inside my dreaming head, make perfect sense. So I asked if I ever talk in my sleep and she said that I do. What’s more she does notice my breathing stopping for short intervals. So I do have sleep apnoea.

We both recognise the symptoms because over the years we have shared confined sleeping quarters (canal boats and sailing yachts) with two good friends who have sleep apnoea and who also both snore for England. We could never decide what was worse- the incessant snoring or the agony of waiting for the next snort when the breathing stops! Since one of these blokes used to skipper us when we were sailing this was dreadful in the early dyas when we didn’t have much of a clue about managing a yacht or navigating. ’ Oh God, has he died? What are we going to do if he has?’

I’m consciously doing breathing exercises now to keep the muscles in my ribcage fully active. I think the sedentary life I lead now doesn’t involve enough deep breathing through the day.

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Pat I can only imagine how scary that was. Sleeping more upright does help your breathing but you should see your gp. My dad has just been dx with MND as you know and his chest muscles have been severely affected and he’s just been tested in hospital where they put him on CPAP overnight. It really helps him, he’s more alert and much better in himself. It took him a few nights to get used to it but it’s so worth it.

Please don’t ignore it, sleep apnea can be very serious if left untreated. Sometimes we aren’t keen on treatments or tests we have to have, I got one have a fortnight from hell coming up with them, but they are done for our benefit. And please let us know how you get on.

Cath xx

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Hi Pat,

I’ve had this all my life since childhood. I was so terrified a few years ago that I took myself off to my GP who told me it was one of the components of the Narcolepsy Syndrome, nothing to worry about (no really? :wink: ) and nothing to do with my MS. I find I get it after prolonged periods of stress when I finally unwind and was told not to fight it because I’d drift back to sleep naturally. Narcolepsy happens to be another auto immune condition so possibly it is related to MS in some way or another. As for me if I’m not careful I also get the Cataplexy, both in this link ( fingers crossed it works)

http://www.narcolepsy.org.uk/about-narcolepsy/what-is-narcolepsy

Terrifying nonetheless especially moreso if you’re on your own and I really feel for you over it.

Eiona x

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Aww my wonderful Pat!

im so sorry you’ve been going through this! It’s terrifying I have done it once or twice in a while, and I wake up gasping, but your on yr own, your so brave my sweet.

Im just home from Glencoe and I wish you could have seen it with me? I wish I could share some pictures with you, the air was so clear and the skies were so clear and blue as was the water.

i wish I could take all my friends from here.

but in seriousness I am 38 and so dependant on my care from family that I’m worried of anything happening to them, feel like a burden, I think you all who do it alone are worthy of my highest praise.

love and hugs Polly xxxxx

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Pat so pleased you had a better night last night, you must still go to your GP though.

Just a note of warning, by using two pillows you risk neck problems. I had to visit an osteopath quite a few years ago due to neck and shoulder problems, she advised me to sleep on my back using one pillow. I realise it eases your breathing problem and I’m not saying do not use two pillows just be aware if you do develop neck problems.

Nina I wish I hadn’t updated but like a good little girl I did…no more though!

BTW my return key is working this evening

Jan x

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