5 Comments

TongueTalk

My sleep apnea story started as a teen. I have a very small face/jaw and heard scattered reports of severe snoring.  I actually kept my senior class up all night with one of these episodes… 🙂  I have never seen so many murderous eyes glued to me at once.  Apparently no one could wake me up!

cheechingy.com

The week after I got married, my new husband bought the loudest air filter he could find, citing “allergies” and missing his radio, which I prohibited.  Fifteen years later, when my daughter was undergoing a sleep study for large tonsils, he made me go with her, and I was so disruptive to the study that they couldn’t hear her breathing.  Of course, they woke me up the next day to tell me that her study was invalid and by the way I must have severe sleep apnea and I needed a study right away.  Really?  You didn’t wake me and move me out of the room and instead charged my insurance 4000.00 and my daughter didn’t get her study?????

Idiots.  I should have had the charges reversed.

I went home and asked my husband if I snored.  He said “Why do you think I insisted we get a loud air filter for our room the month we got married?”  Ok, we had been married for 10 years at that point, you think he would have mentioned it before now?  MEN!

At the time I was having horrible symptoms.  I couldn’t sleep for more than a minute or two without severe twitching.  I was dizzy and exhausted all the time.  I would take 3 hour naps.  I had migraines.  Yup, all sleep apnea.  For some strange reason, I had 3 tests and none were completed enough to get the information, mainly because I couldn’t go to sleep.  So I was sent to neurology for dizziness, and with the workup had study #4.  I was able to sleep off and on for 4 hours.  I apparently woke up every 45 seconds with obstructions–254 episodes in the 4 hour period.

Hello CPAP.

Imagine putting your face in front of a speed fan on high while breathing through a snorkel mask. 

It was miserable, and the DME company could not find a mask that fit me for a year.  But I kept trying, knowing that heart failure was the end of untreated sleep apnea.  Finally I was special ordered a “micro-preemie” specialty mask.  And for the most part it works ok when it doesn’t slip off or break the seal.   While some of my symptoms have improved, researchers have discovered that CPAP does help, but the condition continues to slowly cause end organ failure (IE: heart, brain and kidney injury).  Bummer.  And the setting prescribed may need to be changed when one is stuffy or had surgery or taking medications that cause relaxation, or a number of other issues.

And surgery is scary.  I had significant problems after my breast reconstruction.  The hospital couldn’t find a mask that fit, and my mask didn’t fit the hospital equipment, as it is special ordered.  So I languished with oxygen saturation levels in the 70’s  (normal is 95-100%) for an unknown period of time.  Due to that, and hypoxia in surgery with low blood pressure, I developed acute kidney failure and anoxic encephalitis (oxygen deprived brain injury), losing total memory of my hospitalization.  And I TOLD them to be ready when I came out, so I have been pretty miffed over it, as I now have short-term memory loss requiring Alzheimer memory enhancing drugs.  So let that be my lesson to all. If you think you have this condition, go tell your doctor!

Because of my memory issues, I got scoped recently.  And found out that the reason why I feel like I am breathing through a straw during the day is because I am now obstructing while I am awake.

kootation.com

The cure?  A tracheostomy.

As  I don’t want to suck air through a tube for the rest of my life, I am taking a less drastic try at having part of my tongue removed on May 21.  Supposed to be horribly painful, but I am “against a rock and a hard place”.  Although 3 surgeries in one year is depressing to say the least.

The symptoms of sleep apnea can be silent or extremely varied and severe.  Long and short, if you are chronically tired during the day and often nap in the afternoon when you have the time, you need to take an Epworth Sleep Assessment, a short questionnaire that let’s your provider easily score it for likelihood of a sleep disorder.  It takes less than 5 minutes.  Don’t kill any more brain cells if my story sounds familiar, or if you are tired during the day!  And undiagnosed sleep apnea kills others too.  It is thought to be a major player in auto accidents.

I now deem today to be the National Happy Restful Sleeping Day!

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5 comments on “TongueTalk

  1. Oh honey that sounds so horrible. You are in my thoughts and prayers. Having part of your tongue removed? That sounds so drastic. Are they sure that your speech will not be adversely affected? Having a trache is also an unpleasant idea, but at least it would bypass your upper airway and you wouldn’t have to tinker with your tongue. I’m thinking, what would I do if it were me? And I can’t even imagine the pain of having to make that decision. Sending you good juju, and if you ever need someone to just vent to about it let me know in these comments and I’ll send you my email.

    • Im trying not to freak out. I had my pre-anesthesia visit yesterday. Yikes. I don’t have a choice, I cant work in pediatric dialysis with a trach. So I will suck it up and put on my stone face. I was told to expect to sound nasal, lose part of my singing voice (which is a hobby) and the rest of the taste I have left after chemo. Bites, but there it is. When I get sad, I just think that I have a chance other people with severe upper obstructive airway syndrome didn’t have even 20 years ago. I am in the right place at the right time, praise God.

  2. Keeping you in my prayers this week. God keep you in His peace and work wonders in your body.

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