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Sleep Apnoea Forum Bringing Help + Support to the Patient

Hello everyone, I am hoping that maybe someone out there has been through what my husband is currently having to deal with. 

Three years ago my husband randomly collapsed at his place of work (hes an engineer and works with machinery so naturally him loosing consciousness was worrying). At that point we were sent to a neurologist but they found nothing and ultimately it was written off as a one time "weird health issue". 

Then last year in March it happened again, again an ambulance was called, he was admitted to hospital for 24 hour observation with heart and brain monitors. The neurologist we had seen the two years beforehand said we would now need to figure out exactly what is going on because clearly it wasnt a one time thing. 

When my husband collapsed, he complained of having pins and needles like pain down his arms and legs, he lost consciousness for approximately 60-90 seconds and upon waking his entire body felt weak. It would take minutes for him to be able to move by himself. For the days following a collapse he would struggle with muscle weakness and fatigue. 

Over the last year we have had many appointments with specialists, we have seen neurologists, cardiologists, thyroid specialists, hes had MRI scans, echos of his heart, more blood tests than we care to count and eventually someone recommended a sleep study. 

Following the sleep study we found out that he has severe obstructive sleep apnoea, he was given a CPAP machine with a nose mask and started treatment around September 2017, in November 2017 we had a secondary sleep study to ensure that the CPAP machine was working. 

The machine works fine, and so we know that he has been having successful/effective treatment for the sleep apnoea since November 2017, however the muscle weakness and the collapses (and loosing consciousness) havent stopped. 

It is literally as if someone has drained him of all physical strength. He is in his early 30s, has always been active (engineer by trade, football player by hobby) and now he is unable to do any of that. He is not overweight (though in the year he has now been at home he has gained some weight)

He has been out of work for over a year now (registered sick) because the doctors still do not understand why he is loosing consciousness and so long as he has these episodes he is not safe to work with machinery. 

He is currently following a strength rehabilitation programme at our local hospital (twice a week), think of it like an hours modified work out. But rather than seeing any improvement, all we are finding is that on the days that he does this he then comes home and has to sleep. On a day that he isnt at the hospital he can do general day to day tasks but again anything too phsyical then he suffers with pins and needles like pain, muscle weakness and often has to nap during the day. 

We are currently waiting to be referred to a university hospital for further investigation, but I was hoping someone here might have some ideas of the direction we may need to go in? 

Has anyone here ever passed out and lost consciousness? Could this be a side effect of the sleep apnoea or is there another problem causing this? 

At this point we personally believe there is something else going on, he struggled with his CPAP machine to begin with but now talks about how much better he is able to sleep, but the muscle weakness doesnt seem to be going away. 

His latest collapse was three weeks ago, because he tried to mow our lawn. 

Oddly, the collapses started in March 2017, he went on to have roughly one collapse every month until August. Then there were no further collapses until March 2018, and again its been one every 4-6 weeks)

Any advice or insight would be greatly appreciated, as Im sure you can all understand it can be incredibly frustrating at times! 

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Welcome to our forum Bethany, but so sorry to read of what you're both going through.  Glad your husband's severe sleep apnoea got picked up finally and at least you know he's on good treatment for that.  However, it's awful when there is something else going on that you can't get a reason/diagnosis for.  We had a similar thing with my husband, which I'm sure isn't the same as yours as my husband used to collapse or fit after eating, and it was actually me who finally found the reason that 10 years of medical investigations hadn't (via Google) - Swallow Syncope.  Fortunately, our GP listened to what I'd found, sent him to a heart specialist and within days he was fitted with a pacemaker which solved his problem.

There are so many muscular problems out there and my first thought was myasthenia gravis or something similar, but I'm not sure if people lose consciousness with that. 

I'm no doctor, but wouldn't think this was to do with your husband's sleep apnoea if it's well controlled and I do hope you get to the bottom of this.  Please let us know when you do and don't give up as there will be an answer out there, even if you have to stumble across it yourself like I did for my husband.

Is it a CPAP machine with a fixed pressure he has?

It might be that a fixed pressure machine is not the right one for him or he may have a complicated Sleep Apnoea, in other words there are other things going on other than just his throat obstructing his airways.  He can also just stop breathing and this has the same effect as above, if he has this he might need a different machine.  The chances are you will not have a copy of his sleep study, in any case it can be masked b the Obstructive Apnoeas.

Has he had a full blood test done to rule out having to many white or not enough red cells in his blood?

Muscle wastage might not have anything to do with Sleep Apnoea, but if he is not doing much that will cause wastage in the muscles.

However, if he has put on some weight he might need a bit more pressure, though if he has a APAP machine he might be fine.  Get him checked out for pressure.

His CPAP machine is currently set at 7.5cmph, it was originally a little lower but after his check up they advised to increase it. He has follow ups with a sleep doctor every 3 months for the first year (unless we are having problems then we can go to them sooner) so its certainly something we can bring up at the next appointment. But he feels like its working well at this point. 

Hes had loads of blood tests done, I would assume they would have done the general checks as well (I will have a dig through our copy of his medical notes- we have copies of all the early investigations for whenever we visit a new specialist since sometimes the computer systems dont like to play ball)



Sleep2snore said:

Is it a CPAP machine with a fixed pressure he has?

It might be that a fixed pressure machine is not the right one for him or he may have a complicated Sleep Apnoea, in other words there are other things going on other than just his throat obstructing his airways.  He can also just stop breathing and this has the same effect as above, if he has this he might need a different machine.  The chances are you will not have a copy of his sleep study, in any case it can be masked b the Obstructive Apnoeas.

Has he had a full blood test done to rule out having to many white or not enough red cells in his blood?

Muscle wastage might not have anything to do with Sleep Apnoea, but if he is not doing much that will cause wastage in the muscles.

However, if he has put on some weight he might need a bit more pressure, though if he has a APAP machine he might be fine.  Get him checked out for pressure.

Thank you for the welcome. 

It can get very frustrating, especially when we hear stories like yours with a very long fight before getting any actual diagnosis. We have feeling that we are also going to be on a very long road before we find out. 

Sometimes our GP is incredibly helpful and willing to listen and is open to suggestions and yet other times she gives us the impression that we may never find out and we need to just "deal with it" but, in my opinion, loosing consciousness because you were too active is not something we can just "deal with". Nor am I prepared to be fobbed off.

Kath Hope said:

Welcome to our forum Bethany, but so sorry to read of what you're both going through.  Glad your husband's severe sleep apnoea got picked up finally and at least you know he's on good treatment for that.  However, it's awful when there is something else going on that you can't get a reason/diagnosis for.  We had a similar thing with my husband, which I'm sure isn't the same as yours as my husband used to collapse or fit after eating, and it was actually me who finally found the reason that 10 years of medical investigations hadn't (via Google) - Swallow Syncope.  Fortunately, our GP listened to what I'd found, sent him to a heart specialist and within days he was fitted with a pacemaker which solved his problem.

There are so many muscular problems out there and my first thought was myasthenia gravis or something similar, but I'm not sure if people lose consciousness with that. 

I'm no doctor, but wouldn't think this was to do with your husband's sleep apnoea if it's well controlled and I do hope you get to the bottom of this.  Please let us know when you do and don't give up as there will be an answer out there, even if you have to stumble across it yourself like I did for my husband.

The two things that come to mind is diabetes and low blood pressure.  Though I think they would have checked for diabetes, a sudden drop in blood pressure is more difficult to catch.  Has he had his heart checked?  Also there is a condition that affects the brain that can make people pass out without much or any warning, the name escapes me but there is also a lot of other causes.  I hate saying to someone "Look it up on the Internet" but this is an NHS page of causes. NHS Fainting/Passing out causes.

It might help find if he recognises any of the symptoms, sometimes doctors need a gentle nudge in the right direction.

But do not panic if you do find something, it may not be that at all.

Good luck.

Hi Bethany,

Just a suggestion but has anyone mentioned narcolepsy?

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