Wired For Sleep

For some time now, I have been feeling like I’m having difficulty breathing whenever I lie down to sleep. My first concern was that this may be from my CMT (Charcot-Marie-Tooth disorder). However, my doctor said, “What are the chances of you having a rare disease and also the rare incidence of breathing difficulties.”  So, I postponed seeing a pulmonary specialist, thinking my doctor must be right; maybe it’s just stress.

Then I started waking myself up from my loud snoring, or really more like snorting, and the tightness in my chest became more pronounced. I also have been feeling more drowsy during the day to the point of falling asleep whenever I attempt to read. (legal thrillers, not some boring book).

This lead me to think I may have sleep apnea. Sleep apnea is a potentially serious sleep disorder in which breathing repeatedly stops and starts. If you snore loudly and you feel tired even after a full night’s sleep, you may have sleep apnea.

So, I decided it was time to get checked out by a pulmonary specialist. Just answering the 4 pages of questions lead me to believe maybe I really do have sleep apnea. I’m thinking this would be preferable to CMT related breathing issues, since sleep apnea can be fixed with a CPAP machine.

The pulmonologist agreed I could benefit from a sleep study, also called a polysomnography.  A polysomnography records your brain waves, the oxygen level in your blood, heart rate and breathing, as well as eye and leg movements during the study.

sleep-study-data
I was feeling a bit nervous as my appointed time to arrive for my sleep study at 8:30 on Sunday night drew near.

After checking in and meeting the technicians, they showed me to my room, similar to a small hotel room. The first thing I noticed upon entering my room, was a black box with plugs for the wires placed on the bedside table.

A tiny TV hung on the wall opposite the bed. A chair sat close to the bed, leaving barely enough space for my long legs. There was also a private bathroom and small closet to hang my clothes. However, I just tossed my jeans and T-shirt into my overnight bag. The technician pointed out the camera and asked me to change in the bathroom. Good thing she remembered that detail. Although, it would have been easier to sit on the bed to change. With CMT, loss of balance is an issue. So, I had to lean in the corner of the bathroom while changing into my T-shirt and shorts.

After an hour to settle in, while they were checking in others, Melissa, who was new and just learning on the job with me, arrived to take me to their so-called beauty room. This is where you spend about 45 minutes relaxing in a beauty salon type chair as you hooked up with many colorful wires. First they measure your head in various directions and mark up your scalp with red crayon. X marks the spots for the electrodes.

wired up for sleep study

Along with your head, ears, and face, electrodes are attached for an EEG and more to your shins to check for restless legs. Then a nasal cannula is inserted in your nostrils to check for air flow. The other end of the wires are attached to a box worn around your neck so that you can easily carry them with you if you need to move about your room.

After watching TV for a little bit, Melissa arrived to hook me up to the box and the computer. She made sure I was as cozy as I could be with wires popping out every where, and reassured me if I needed anything to just ask. They would hear me through the intercom. I’m thinking, Oh Great. Not only are they watching, but they are listening as well. They’re going to hear me snorting. Oh well, I’m sure they get that a lot.

In spite of Melissa’s efforts, I could not get comfortable. Besides feeling like I cannot breath sufficiently, just the pressure of the mattress was hurting my legs.

This seemed like the longest night of my life. I was used to relying on a sleeping pill to drift off. I thought it would take forever to fall asleep, and worried I may have to do the test again if I could not sleep at all. To make matters worse, the technician had to come into my room twice during the night, because the leg wires became unattached from my restless legs. I was dismayed to find out it was only 4:30, thinking I still had quite a while to go. But then, I was pleasantly surprised when I was let loose at 6:30 am.

After removing the wires and connections, I discovered big blobs of goo in my hair. The connection gel, that felt like Vaseline, was difficult to wash out of my hair. Now, I just need to wait 2 weeks for my next appointment to find out the results and to go through more pulmonary function tests.

I am hoping my difficulty is just sleep apnea, controllable with a BiPAP machine. Although, I’m not looking forward to wearing the mask. When I was in the hospital for minor surgery, I woke up feeling like I was suffocating due to an oxygen mask. Apparently, I had a bad reaction to morphine. The attendant wheeling me down the hall to my room, had to call a code blue. I came to hearing a doctor yelling for narcan. But that’s another story.

What to expect in a Sleep Study.

Generally involves spending the night sleeping at a sleep laboratory or sleep center.

Before Your Visit

It will be important to avoid caffeine, alcohol and naps the day of your study, as these may interfere with your ability to sleep.

What to wear and what to bring

Patients are encouraged to bring comfortable sleepwear, such as loose-fitting T-shirt and shorts. Nightgowns are discouraged. You can bring your own pillow and your teddy bear. Unfortunately, pets and bed partners will not be accommodated.

What to Expect at the Sleep Center

There will be a bed, bathroom facilities and the equipment necessary to complete the study.
Some clinics have rooms similar to a hotel with furniture, a closet and a TV.

Getting Set Up for the Study

The technician will spend about 45 minutes setting you up for the sleep study, measuring your head, marking your scalp, cleaning a few small patches of your skin. Then along with the electrodes on your face and scalp, an electrodes will be attached for an EEG, and on your shins to check for restless legs. These wires will be connected to a small box, which can be worn like a necklace, which you can carry around. A nasal cannula, plastic tubing that sits in the nose, will be applied to measure airflow.

Getting Connected

Let the technician know when you feel sleepy, so they can connect your wires to the wire box and a computer. There most likely will be a camera and two-way speaker in the bedroom, so if you need to get up during the night, you can call for assistance.

The technician will test the equipment by asking you to open and close your eyes, move them around, snore, and take breaths in and out. If a wires comes loose during the night, your technician will come in to fix it.

Falling asleep

Even with all the wires, it is rare that someone cannot sleep at all. Don’t worry.

kitty asleep in food
The Morning After

Most people get up at a regular time, or you may be woken early. The wires will be removed quickly and there may be a questionnaire about your night’s sleep to complete.
Most likely your doctor will review your results and give you the information at your next visit.

Resources: http://www.mayoclinic.com/health/sleep-apnea/

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About cmtny

Due to symptoms of Charcot-Marie-Tooth (CMT) neuromuscular disorder, I left my career as a pharmacist. Then, with the support of the CMTA, founded the Upstate NY CMT support and action group. I write to raise awareness of this genetic peripheral neuropathy. In addition to writing and advocating for others with CMT, I also co-coordinate our Art de Cure gallery at CPO, where we have raised over $21,000 for CMT research so far.
This entry was posted in Charcot-Marie-Tooth disease, Health CMT, neuromuscular disease, peripheral neuropathy, sleep apnea, sleep study and tagged , , , , , , , , , . Bookmark the permalink.

3 Responses to Wired For Sleep

  1. I like the valuable information you provide on your articles.

    I will bookmark your blog and test once more right here frequently.

    I’m relatively certain I’ll be told many new stuff
    right here! Good luck for the next!

  2. Thank you for explaining the whole mysterious process. I may be doing the same thing only I could never sleep in a mask but another cmter Danielle Newman talked about a dental appliance that can be used instead. Information sharing is so important. Awesome article!

  3. Wow! There’s so much involved with that whole process…I sure hope everything you went through gave you some results, especially the ones you are looking for!
    Christine

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