Breathing/sleep issues

[ZoeSweet7]

My Dad has struggled with his sleep for a long time now. It started with ‘kicking out’, throwing arms around strange noises. These days his snoring sounds and ‘high pitch’ noises are becoming quite alarming. He spends most of his days breathless and he takes rapid short breaths.

Over New Year he was admitted to hospital as he become very poorly. He ended up with Pneumonia (through aspiration) and they noticed his sleeping habits/breathing issues then. He does suffer with horrendous insomnia and can only ever sleep 2,3,4 hours max a night. But in hospital when he did get to sleep his oxygen levels were dropping and he was having to use the Oxygen mask. Once they cleared the pneumonia he was sent on his way. (This was before his diagnosis of MSA). I expressed my concerns to all the nurses of MSA and went on and on about it.

We are still waiting on Occupational Therapy and the neurologist to write up his notes to his GP. But for now he just goes on suffering and declining.

[Hidden]

The high pitch sound breathing issues sound like he has "Stridor", and the legs kicking out during sleep, along with lack of enough sleep, is probably "REM sleep disorder". The lack of oxygen dueing sleep is usually down to sleep Apnea events. These are common symptoms in MSA skeep issues, my wife suffered from them all also. In short the air ways are collapsing, but this may reduce due to weight loss over time.

Kevin

[ZoeSweet7 in reply to Hidden]

So potentially life threatening..? What happens about this ? We are still waiting on neurologist to do my Dad’s plan of action, but the longer it’s taking the more scared I’m getting!! He once was around 10 stone. Physically athletic, ran marathons and ran for a hobby...now he’s about 7stone.

[Diane831]

My husband got a referral for the North West Ventilation unit. He was supposed to go in for overnight monitoring of his blood gases but his sleep wasn’t as disturbed as your Dad’s and he wouldn’t have wanted overnight breathing assistance anyway so had some blood taken at home instead. (We did get a cough assist from them which helped Him clearing his secretions). I hope that your Dad gets some help, these are not uncommon symptoms for MSA sufferers , although as you will be aware everyone’s different.

Diane

[ZoeSweet7 in reply to Diane831]

Hi Diane, thank you. I’m sorry you’re both also in this position.

What is a cough assist ? My Dad struggles to cough. Can only make a ‘clearing throat noise’. What with swallowing difficulties anyway I think it’s bad news waiting to happen.

I do hope so too. He does have physio for his respiratory coming up (I think) possibly tomorrow, one for that and one for movement. So many appointments!

Thank you

[Diane831 in reply to ZoeSweet7]

A cough assist is a machine with a mask you hold over your face and it blows extra air into your lungs and then sucks it out quickly to try and imitate a cough. It is set for each patient individually and usually does 3or 4 repeats and then stops. Someone has to help holding the mask in place. We didn’t use it every day but it certainly helped the amount of air Geoff breathed in and out and he didn’t have any more chest infections once we had it, although there were times that even repeated use wouldn’t clear phlegm from his throat. Speak to the respiratory physio about anything that could help in your situation.

[Janeyl]

Zoe - you need a referral to a pulmonary specialist. Your GP is obviously going to be led by your Dad’s neurologist, but it is not uncommon for a CPAP machine to be prescribed.

blf.org.uk/support-for-you/...

Keep the pressure on GP/neuro - keep calm, but be firm! Good luck.

[ZoeSweet7 in reply to Janeyl]

Thank you. That's very helpful as I hadn't thought of a pulmonary specialist.

x

[Hidden]

Hello, our neurologist gave clonazepam to fix the sleep thrashing side of things. Think it regulates oxygen levels in the brain better at night. (And stopped him having mild daytime hallucinations due to variable brain oxygenation at night). Works well. Consultant letters seem to take months to reach gp. I just call gp and tell them it's on its way, and get them to start what has been agreed already. You can probably get the neurologists secretary's number from hospital switch board. They can be good at finding out where letters are (you probably need power of attorney to speak to them tho) best of luck! K

[ZoeSweet7 in reply to Hidden]

Thank you for your reply. I wrote up a letter of permission and had Dad sign it for me to enable everyone to talk to me regarding his health, etc. Which was allowed so I can phone for/ with any info now. I have the secretaries email of the Neurologist.

[ChocolatePot]

Hi Zoe

Husband's neuro referred him to the sleep clinic, where they gave him a machine to wear overnight and found he has mild sleep apnea. He now wears a mask attached to the CPAP machine every night. Some days he only wears it 30 min others he manages 4 or 5 hours. Apparently 4 is the minimum he should wear it. As for the kicking out, husband was/is good at that too. Neuro has now put him on Clonazepam for this as it is rem sleep disorder. Good Luck

[ZoeSweet7 in reply to ChocolatePot]

I believe my Dad will eventually get the same treatment then. When we said about 'high pitch' noises to the Neurologist, his eyes lit up. I know he was very concerned.

Thank you

[Pelley]

Zoe

I returned from a Xmas trip to Columbia S. America to visit my daughter.Son in law and new grandson, and am still struggling with breath issues and raspy cough that came on while there. My Current PD resident has been saying MSA for over a year..... guess I’m starting to believe him.

[ZoeSweet7]

Congratulations on your new Grandson, what a credit he must be!! I'm sorry if this is the case for you and I do hope you get the answers you need. Push for neurology, at least then you can focus on your symptoms.

All the best, you aren't alone Pelley.

Zoe

[Kiwimagic]

Hi Zoe

Your dad needs referring to a respiratory consultant ASAP so that sleep studies can performed he prob needs a c pap or bpap machine. Did they check his pco2 when he was in hospital ?

X x

[ZoeSweet7 in reply to Kiwimagic]

He went to an appointment today. Been given a breathing device. Could be CPap or Bipap, not sure. I’ve asked him but he doesn’t no either. Typical Dad xx

[heysunshine]

Hi Zoe,

my husband had the thrashing and kicking along with excruciatingly loud snoring for years prior to being "officially" diagnosed with MSA. He was sent for a sleep disorder study and they said he didn't have sleep apnea and did nothing... after another 18-24 months of nighttime torture for me (and becoming sleep deprived and miserable) I made them send him for another one. Of course this time he was issued a CPAP machine. This helps him sleep better (and me!) because he is quieter, but he still deals with some restlessness and thrashing and vivid dreaming. I found that Melatonin helps with lessening the restlessness, which I now believe is the REM sleep disorder associated with MSA.

I think we have to explore the pulmonary issues... I'm still trying to learn about all this stuff too.

[ZoeSweet7 in reply to heysunshine]

He was given a breathing machine of some sort but he doesn’t know what it is. Might be a CPap jobby...? Who knows

My husband read up on melatonin. Maybe that’s a route for him to try.

I hope you’re managing to get some well deserved rest. X