Getting and Using My CPAP
This post is not meant to diagnose, treat, or save you from mental illness; if you or someone you love is in danger, please get help. You can text HOME to 741741 to be connected with a crisis counselor. I personally have. You can also call or text 988 for suicide and crisis help.
http://www.cdc.gov/suicide/facts
My name is Lauren and I have Bipolar 1 with psychosis. Since my diagnosis I have been doing everything possible for me to find out why I go into psychosis and to stay out of it. I have fallen short a few times and ended back in the psych ward. In looking for ways to help my condition, I went to see a neurologist for insomnia. I asked my primary care doctor who I have been with for sometime for the referral. After he gave it to me, it took me a few months to get in. Everyone told me, including some inpatient psychiatrists, that I would have to see a pulmonologist for a sleep study. You see, I have been having trouble sleeping for so long that it has sent me into psychosis several times. The biggest problem I have is the psychosis; it makes me do things and act in a way that is very outside my personality. Some of the behaviors I have exhibited were dangerous to my well being. For example, wandering around the neighborhood, peeping at people, and basically acting like the worst kind of drunk. (This has all happened without the use of recreational drugs or alcohol.) Thankfully, when I am in psychosis, I begin acting like a small child more than a grown adult. I am a threat to myself by wandering, but I have never tried or attempted to hurt anyone. I quite simply have the mentality of a very drunk friend who doesn’t listen to reason. I am sure my family could describe it more in detail, but for the most part I just sing, wander and make no sense what so ever.
In an attempt to figure out why I don’t sleep, I took it upon myself to find out why. I remember sleeping well in my teens, after school. However, as a young child and an adult, I have always had broken sleep. I can stay awake for hours just staring at the wall. Sometimes sleeping pills work, other times they do not even touch the problem. I start out by missing a few hours of sleep, until I get less and less, and then none at all. When I first went to see my neurologist, he told me that sleep apnea (not breathing well, and stopping breathing at night) might be the cause of a lot of my problems. He sent in an order for a sleep study and less than a week later, I had a scheduled sleep test. The test was in a hospital setting, overnight. I knew I would have to sleep my best, in order to get the best test results. However, I definitely had test anxiety about this study. I ruminated for days over how well I would be able to sleep at the same hospital that I had my psychiatric stay. Yes, I would be in a different wing all together. Although, the idea of being so close to a psych ward that had kept me for several days was jarring.
In the upcoming days until my sleep study, I wrote down all the benefits to getting some answers to my insomnia: better sleep, feeling rested, less fatigue during the day, less anxiety, improved brain function, improved moods, and lowered risk of stroke and heart attack. All of these are benefits of the sleep CPAP machine I was hoping to be prescribed. I was trying to be optimistic about my results. Yes, it would be bad to find out I had sleep apnea, although at least it was treatable. Terrible sleep could be the main reason my body was falling into psychosis so often; I had entered psychosis three times in thirty days recently. I was determined to stay out of the psychiatric wing of the hospital, if at all possible.
The day of my sleep study came and although I was feeling anxious, I was also excited. I packed up my things: a comfy blanket, comfortable pajamas, a book, my water bottle, and my toothbrush. I also packed all of my night time medications, hoping they would work that night and get me some good rest for the study. When I arrived at the hospital, I am not going to lie, I drove past the psych ward floor and looked up at the windows. Knowing I had recently been on the other side of them, made me feel weird to say the least. I was definitely proud of myself for coming this far. Knowing that I could still be behind the glass, gave me the confidence I needed to get this test done and sleep as best as I could.
As soon as I walked in, the ladies at the desk were amazing. I even began joking with them and soon learned that both of them had been working in their positions for a long time; this was comforting. When I was shown to my room, it was cozy. There was even a shower, a recliner and a tv, along with a pretty big bed and clean sheets and pillows. The nurse also informed me that there was snacks and drinks in the lounge free for my taking. She asked what time I usually went to bed, and said they would try to get me all set up before that time arrived. I settled in and got to reading my book. I had a snack, my nighttime medication, and brushed my teeth. Before I knew it, they asked me to come into another room. They attached wires all over my head, arms, legs and a wrap around my stomach and chest. There were so many wires that they basically braided them behind me and it drooped around to the front. I was then attached to a small square box that actually looked like a bomb detonator from a Hollywood movie. They instructed me to take the box to my room, and told me they would come around later to hook the box up to the monitor. Thankfully, none of the monitors would make any noise and would allow me to sleep as peacefully as possible.
When they finally came in to get me hooked up, they told me that there were cameras to watch me in case I needed to use the bathroom at night. I was also informed that there was an intercom on the wall that I only need to call out to if I needed anything. This reassured me as I felt a little locked to the bed through all the wires, the small box and the monitor. It took me a while to fall asleep; the pressure to get to sleep was a little unbearable. I laid there and told myself over and over that I could do it. That if I just relaxed enough, the medication would work and I would get to sleep. I managed to nod off after about an hour. I did wake up a few times at night for the drink I had placed next to my bed. I tried my best each time to go back to sleep. Thankfully, I did. I went to bed around 11pm and was woken up at 530am; the test was over. I had done it: slept through the night and completed the study.
After a few weeks the results came into my mychart app. They were unable to be read by me. I didn’t wait for my doctors office to call me, I instead called them and asked when they would be read. I was told only a few more days. As soon as the chart told me the results were in, I called again. I was told I was diagnosed with sleep apnea. I wasn’t very surprised, although at one point I very much thought I would be. I was being sent for another test that would determine what air strength prescription that was to be loaded on the CPAP machine I was going to receive. I was happy. Yes, I was a little sad I had to do another study and wait to get those results as well. It seemed like it would be a long time before I would have my own CPAP; but I was hopeful.
The next study went by like a breeze. It was easier than the first, because I knew where to go and what to expect. This time, I drove by the psych ward windows proud of myself for what I had accomplished and knowing I was working my way towards a healthier life for myself and my family too. The difference between this second sleep study and the last, was that I was to be hooked up to their CPAP machine this time to see how well I responded to the therapy and to see what pressure I needed at night. The CPAP machine pushes air into your body to help with the lack of air you are failing to draw in yourself when you have a non breathing episode at night. Since my case was mild, I figured my prescription would be too; I was right. After sleeping with all those wires again, plus the CPAP mask over my nose, I was given my prescription number. It took a few weeks for the doctor to send it off to the medical supply company. I sped up this process by calling my neurologist and asking that the prescription be sent out.
The medical supply company reached out to me within a week of getting my prescription. It took from December, when my first study was done, until mid January to get the call. I spoke with the medical supply company about cost; it isn’t cheap. But $350 plus a rental fee of $15/month for 12 months (then you own the machine) is worth the cost to sleep better and stay out of the hospital. Not to mention the other health benefits that come along with it. My mother has had two small stokes at only 60 years old, and my grandfather also suffered from a severe stroke; I want to break that cycle. It took about 10 days after my payment for the CPAP machine, tubes, mask, and carrying case to come in the mail. It is a small, quiet unit. I can attest to this as my husband has one also; they are very quiet.
Once my machine was here I only had to wait a few more days for a virtual visit from a respiratory therapist. I was to hook up the machine before hand and have it plugged in with distilled water in the chamber. This part was easy as I have seen my husband do it many times. Also, there was an advertisement for the accompanying app and step by step instructions provided. The respiratory therapist was patient, kind and informative. She answered all of my questions, made sure my machine was set up properly, that my mask fit well and that I was all good to go for the my new life with a CPAP.
It has been six days now and I can honestly say that I am sleeping better. It gives me a lot of comfort knowing that I am going to sleep with a machine to have my back if I stop breathing. Sometimes, my anxiety would lie to me as I would lay in bed at night trying to sleep. My anxiety would tell me that if I went to sleep, I was never going to wake up again. Was it just anxiety? Or was it my brain always trying to tell me that I wasn’t breathing at night. Is that why I would wake up so many times at night? Is this the treatment I have been searching for all along? Only time will tell. But I can tell you this: all of the agony of getting the machine and all the studies and the money was worth it if I never go into psychosis again. Not being able to trust your own brain is a condition I hope no one ever has to go through.
My advice is, when you are feeling well enough, be your own advocate. Just because one (or many) doctors tell you that “it’s probably not that” or “we don’t do those kinds of tests”, keep looking. Do your own research of your own conditions. Yes doctors can be helpful, but if you don’t know enough about yourself, you may never find the answers you are so desperately looking for. Don’t just google it, dive deeper into the issue. Tell the doctors the reason you are there, don’t just ask them what they think. You are your own person, you are different and that’s okay. It takes a long time to get the tests you need. It takes time, money, insurance paperwork, doctors appointments, tests, and possibly several tries with different medications to get to a better place. I am not here to be a know it all, or to say that I am finally cured. Mental heath is a journey, if you are on yours, keep going. Keep asking the hard questions, try your best everyday. Even if that means getting cozy and sipping your favorite nonalcoholic beverage and researching. You have the ability in you. I believe in you, I hope you do too.
-A Manic Monday
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