5 hours sleep

[HorshamMalc]

Hi I have a hereditary neurological disease called CMT Type 1a. I aslo have OSA which I believe is related to the CMT. I'm a 66 year old male, fit, not overweight, and have no problem getting to sleep. My problem is I only ever sleep for 5 hours, which I don't think is enough as I get drowsy if I'm not mentally or physically engaged. A classic example ... I just came back from a 10 day cycling trip in the Scottish highlands. Spent all day yesterday travelling back by multiple trains, with my bike, then 80 mile drive after picking my car up from a friend's house. Got home 2am totally exhausted. Hot milky drink and in bed at 2:45, asleep almost immediately. Wide awake at 7:50am ... as always, 5 hours on the nose! My GP and sleep consultant both seem to think this is OK but I'm not convinced. Does anyone else have this problem?

[Ritchie1268]

Yes.

I average 4.5 hours. I was diagnosed with Central sleep apnoea, the one where your brain doesn't tell you to wake up if you stop breathing. This is now almost non existent since being diagnosed with Pernicious Anemia & getting regular B12 injections, however, I still cannot sleep longer than 4.5-5 hours per night. I just accept that it's just me & I now accept it after I found out that it's all part of PA & B12 deficiency.

Everyone is different I know, but I've gone from stopping breathing 80 times per hour, per night, to now getting at least 4.5hrs uninterrupted sleep & I feel better for it.

I'm sorry this doesn't really help you but, I now know that I sleep as & when I need to & have learned to accept it over time.

I wish you well.

[HorshamMalc in reply to Ritchie1268]

Hi Richie, thanks for your reply. I think in my case the OSA is down to the muscles in my neck failing to control the airway properly due to neural issues caused by the CMT. The trouble is, like with a lot of the more obscure diseases, there are whole range of symptoms that vary with different individuals. Often not well understood, this can result in the underlying problems being misdiagnosed as other, totally unrelated, ailments.

Best wishes Malcolm

[Ritchie1268 in reply to HorshamMalc]

Hi Malcolm.

You're welcome. That must be terrible for you, It isn't nice.

I remember going to meetings where I would find it almost impossible to keep my eyes open at 11.a.m, very embarrassing.

I believe now that my central sleep apnoea was caused by the massive dose of opiates prescribed over a few years for my back. The same drug that's the cause of the Opioid epidemic now in the U.S.

I soon learned all about how long term opiate use causes damage after becoming addicted to them & finding out that opiates restrict breathing. I learned also that nearly every Heroin addict, which is what my Dr at the time prescribed me, have a B12 deficiency & don't realise.

After a very long journey that i almost lost my life to, I beat the addiction over 3 years ago now.

I won't bore you with all the details, but even though I beat it, it had one last final kick & left me with the Pernicious Anemia. Also having Macrocytic Anemia as part of it, meant I have less red blood cells & those I do have are squashed. The red blood cells carry oxygen to vital organs around your body, hence adding to the sleep apnoea. But since regular B12 Injections, the SA has virtually vanished, often with AHI's of 0 & 0.1, 0.2 times per hour etc.

Like you, I have no problem at all falling asleep, but I still cannot stay asleep.

PA is known for sleep disorders, so even though i should now be classed as not having SA, I still get little sleep.

I thought about just donating my body to medical science, but they'd turn me away as a lost cause 😄

I agree, there are a lot that is still not fully understood & how these issues then lead to many other symptoms.

I hope you manage to resolve your issue.

Take care

Ritchie