The Sleep (Apnea) Saga Continues by Robin Gorman Newman

Last night I received a call from a mom I know through MotherhoodLater.com.  She had read my initial blog post on my sleep apnea, and  it resonated.  She was diagnosed with severe sleep apnea two years ago and had yet to treat it.

When I asked why, she said that other things in life had taken her time and attention, and she now feared it had gotten worse.  She was going to see her doctor the next day and anticipated he would order a follow-up sleep test to the one she originally had.  It would determine where she’s at now and how best to proceed.  Her husband has sleep apnea as well and is on mask #8 or so, in his quest to find the one he can best live with.

She had been less than thrilled with the experience of her first sleep test at a medical facility, and I suggested she ask her doctor about doing one at home.  It’s hard enough to sleep attached to equipment knowing your every move is being monitored, so at least if you can do it in your own bed, you have that comfort level.  It doesn’t provide quite as much information, but it can prove sufficient.  It’s what I did, and I was prescribed a CPAP machine that automatically varies its air flow strength based on my breathing needs as I sleep.

Isn’t that so often true as moms that we don’t always put our own life vest (or mask) on first?!

But, with sleep apnea, I get it.

CPAP masks are what is typically prescribed first, and it’s not something that everyone can tolerate.

Another mom I know also has severe sleep apnea and has yet to try a mask.  She simply can’t fathom it.

A mom friend’s husband has sleep apnea, and at present, spends many a night sleeping in a lazy boy style chair because being upright is helpful….though it’s not a long term solution.

It’s a work in progress for all of us and one where support means so much because sleep apnea is often misunderstood.

A friend emailed me yesterday asking how I’m doing.  I replied that I remain sleep challenged, and she asked how many good hours of sleep do I get a night?  This made it clear that she didn’t fully understand apnea.  It’s not insomnia.  You sleep – and I don’t struggle to fall asleep – but when you have a multitude of episodes during the night where you stop breathing – and in my case I’m not aware of them – then you wake as if you didn’t sleep at all, and it’s mind-blowingly exhausting on a day after day, month after month basis.

I’m still endeavoring to wear the oral device at night, along with a Sleep Right plug in my nose, and I elevate the head of my bed with Mattress Genie (which I highly recommend).  I’ve been experimenting with different pillows and found a very cushy memory foam pillow at Home Goods that seems to be my top pick at the moment.

I just ordered a new CPAP mask online to try, at my own expense, in the interest of time.  I surfed around and read reviews, and while I’m hugely reluctant to wear a mask again – I’ve been through five to date – I’m not entirely confident the dental device is doing the job, given how I feel during the day.  I will report on my reaction to the new mask once it arrives.

I also received my didgeridoo and had my first private lesson at my home.  I was lucky, through research on the web, to find a student at Stony Brook University who is a didgeridoo pro, though he can’t continue with lessons once he graduates which is shortly.  He did give me a great introduction, and now I see why the instrument has been documented to help with sleep apnea.  It is HUGELY challenging to make a sound with it.  And, for me, in particular, because I had no clue that I have an inability to naturally vibrate my lips – to make somewhat of a horsey sound.  I spoke to another didgeridoo player in Brooklyn who said that my lips must be tight and that there are exercises and tips he can offer to help with that.  So, I’m gonna give it a further go and see how I make out.

In the meantime as I continue to plug along, for those of you not yet treating your apnea, even if you take small steps like doing throat/tongue exercises (which I shared in my first blog) and sleeping more upright and on your side, those are steps in the right direction.  It all adds up, and you want to do your best not to ignore the condition.

Additionally, the more we can do to raise awareness of the condition, the better for those with it and all others affected by those who have it (and those yet to be diagnosed).  I invite the medical and pharmaceutical communities to work on introducing still further treatment options, including minimalist custom masks, which I do believe is the wave of the future.

I spoke to an inventor earlier this week who awaits a patent on a design he has come up with that would be high on my list to try.  He, personally, has sleep apnea and recognizes the challenges with masks currently on the market.  For now, he said he ordered a boat load of CPAP masks online and has selected one that he’s hoping to make a go of….at least until his own design gets picked up by a manufacturer and becomes available….hopefully sooner than later!

I would love to hear from you with any questions or comments, especially if you are dealing with sleep apnea.  I invite you to share, whether here or you may write me privately [email protected]. 

Tags: bedtime, CPAP mask, Didgeridoo, mattress genie, memory foam pillow, robin gorman newman, sleep apnea, sleep deprived mom