It is my hope that by sharing my story, others may be helped that are going through a similar experience, and maybe they can find some answers. I hope no one else has had to go through anything like this, though.
Here is the experience I had:
I went for my initial sleep over study in which I was hooked up to many things to monitor how I function while I slept. Not once, at any point during this first sleep study was I ever placed on a Cpap device. Within a week or two, I was given an appointment to see the doctor who was skyping in from another city. He informed me that I have severe sleep apnea and stop breathing 36 times an hour. The problem was I was not breathing about one out of every two minutes. This means any time I sleep I was going half the time without breathing, which is quite scary and explains so many of the health issues I've been having over the years. He gave me a prescription to get a Cpap machine with heated hose and a pressure of 12.
I took this prescription to Medigas, a Cpap supplier and they set the machine up, which is locked, so that I cannot change the settings they have placed on it, only they are able to. I can only change the level of heat of the hose and the humidity level of the machine. Having never had this therapy before, I assumed everyone knew what they were doing, as surely they had been doing this for years. I was given a constant pressure of 12 on the machine.
The very first night of using the machine, I woke up an hour or two later, completely dried out and having difficultly breathing. I turned the machine off and got up and got a drink of water to replenish my throat and mouth with moisture. I returned to my room and changed the settings by placing the machine on full humidity, rather than on half where it had been set at Medigas. Okay, no problem, it was a little jarring at first to wake up like that, but hopefully the problem was fixed. I went back to sleep and this fixed the issue.
The next problem I encountered was my stomach filling with air. I would wake up in the middle of the night because my body had been trying to burp out the air from my stomach but wasn't able to against the air pressure. I had to consciously make an effort to expel that air, as my body couldn't do it on it's own while I slept. I looked online for help and discovered this was a common problem and all I needed to do was create a wedge shape with my pillows to elevate my upper body, so this wouldn't happen anymore. It worked. Okay, great, problem solved, everything should be good now, I thought.
I had noticed some swelling of my eye lids when I woke in the morning, as well, but it was getting worse every passing day, until one morning my eyelids were swollen shut. I went to the Medigas office to explain this and find out what to do, but the person I spoke with looked at me like I was crazy. I told them that at first I thought the mask was leaking air, so I was continually tightening the straps to prevent that, but it wasn't the mask. It was the two valves on the hose joint itself that were blowing air at an angle that was directly hitting my eyes. They did not believe me and suggested I was sleeping with my hands in my face and causing this myself. I told them that I do not sleep like that, but they gave no help. It got to the point that I could not sleep due to the pain of the air blowing on my eyes, because of the swelling every night, my poor eyelids and surrounding tissue was over sensitive. I had to stop using the machine, because the pain was too great. I stopped for about three days, and since, this whole time on the Cpap therapy I hadn't really slept well, it seems my brain wasn't functioning at my normal level either. After three days of sleeping without the machine, I was functioning enough to come up with a solution on my own and that was to make an eye mask to cover my eyes while I slept. I couldn't understand, why I hadn't been able to come up with that simple solution earlier, as I am usually pretty good at resolving things normally. Anyway, the mask worked, and I could use the machine again.
Hopefully, the issues had been worked out and now I could finally get the proper rest I need to start feeling better on this therapy. You are supposed to start feeling better once you start using the Cpap machine. It is supposed to make you better. It might take a while if you have severe sleep apnea, I was aware of that because of what I had read online. However, I was feeling worse overtime, not the same and certainly not better. I tried to find help online and turned to a couple of forums to see if others were feeling worse after they started the therapy. I couldn't be the only one with these issues, could I? Anytime anyone wrote on these forums that they were feeling worse after starting the therapy, they were attacked by the other members. They were literally told to seek psychiatric help in some cases as it was impossible the machine was making them feel worse, it was obviously that they had mental issues. I was too afraid to post my issues on there for fear of being attacked like that.
I suffer from Fibromyalgia and all of my symptoms were increasingly getting worse the longer I used the machine. My entire body was screaming in pain. My fatigue was so great I was barely functioning during the day. I would suddenly and unexpectedly just fall asleep at different times during the day. I was having more trouble concentrating. I was having difficulty keeping track of time. I got a headache that never went away after weeks. The longer I was using the machine and I used it every night once I got the eye mask, and for the entire night and every time I took a nap, as I had been instructed, the worse I was getting. I was following orders, so why was I getting worse with every passing day? I luckily have helpers that come once a week to assist me with some of my different issues. They were getting more and more concerned with each passing week as they were witnessing my decline in health. It eventually got to the point that I could not finish a sentence as my mind would wander and I wouldn't know what we were talking about anymore. My mind would go completely blank. I would get help to get groceries and I would get lost in the store and couldn't remember where things were anymore. At this point, my careworkers asked me to stop using the machine. Every time I saw them they would beg me to stop using the machine. I kept saying that from what I read online, it was going to take time to adjust to using it, and it would get better after time. They kept insisting that I was worse and that I needed to stop using it. You see the problem was that I was not functioning at such a bad level I no longer knew what I was doing. I had had a headache for 6 weeks solid now.
I had been scheduled to go for another sleep over study about three months into my therapy. I went and wrote down all the issues I was having. Surely, if something was wrong with my therapy they would pick up on it at this study. This time they had me on a Cpap machine and tested out what level of pressure I needed. This was the first time this had been done. Three months into my therapy, they finally tested me to see what pressure I actually needed. I was sent home the next morning and told it could take a few weeks to get the results. I kept using my machine at home with the pressure still set at 12.
Christmas was coming and my headache never went away. I now had that headache for 8 weeks and had not heard from the sleep study, yet. My careworkers insisted I stop using the machine as they finally were able to convince me that I was far worse using the machine than I had ever been without using it. I stopped. That probably saved my life and I am thankful they were able to get through the fog of my mind and get me to stop.
Two months after my second sleep study, I got another appointment with the clinic. This means I would have been on the therapy for five months, if I hadn't stopped using the machine. At this appointment I was told by the local doctor on hand, that my pressure was to be lowered to 10. That after finally being tested on the machine, it turned out I didn't need to have the high pressure of 12 that I had been initially prescribed. By this time, I had stopped using the machine for over a month, although I would occasionally keep trying to use the therapy, but it would always result in me feeling worse. One of my careworkers attended the appointment with me, so she could verify what I had been going through when the machine was set at a constant pressure of 12. We explained to the doctor that I had stopped using the machine due to all the health issues I was having. He seemed very concerned and set me up with an appointment with the original doctor from the other city. I would not be given my new prescription until I met with him again. That appointment was set up for the following week.
My careworker came with me again, to support me and my claims of how bad I had gotten using the therapy. The doctor was furious with us and accused us of various things and told me all my issues were due to mental illness, not from using the Cpap machine. I'm not kidding, my careworker witnessed this. He told me to stop using the machine for two months and see if I felt better, which he doubted would be the case. He abruptly ended the call and did not issue my new prescription. I had to beg the staff on hand to please get it for me. As I explained to the assistant at the clinic all my issues, she said it sounded like a I had a faulty Cpap machine. I was a little shell shocked for being treated that way, as it was the local doctor that had set up the appointment, not me, so I had no idea why the this doctor behaved that way. My careworker and I left that appointment a little dazed and confused as to what had just transpired.
So, I stopped using the machine and wow, did I ever feel so much better. I was able to think clearly again and start to function at my normal daily level again. Everyone around me was so happy that I wasn't using the machine anymore and I started to become my old self again. There really was that much of a difference in my ability to function.
I went back to Medigas after the two months of not using the machine at all, to get my new prescription placed on my machine, as this is something I could not do on my own because it was locked. They were upset that it had taken me so long to get the machine adjusted, as the prescription had been faxed to them two months earlier. I explained to them that the doctor from the other city, had told me to stop using the machine for two months. They were shocked he had advised that. They admitted they had been having issues with this doctor with other people, as well. The pressure was lowered from 12 to 10. I explained some of the issues I had been having and they were concerned that I had not come to them sooner, as they could have helped me. The problem was that I was not functioning at all, so it never even occured to me to ask them for help, and since I had been there earlier with my eye issue and treated like I was making it all up, I wasn't in any hurry to be treated that way again. Mind you it was a different person that I dealt with for my swelling eyes. Not only did they lower my pressure, but they also adjusted the machine to ease off the pressure so that I could exhale. This was not done the first time I was given the machine and I did not even know this was something that could be done. Why this wasn't done automatically, especially for a first time Cpap user, I will never know. I told Medigas that the sleep clinic said I had a faulty machine and they tested it and said it was fine.
Since having my machine pressure lowered, I went online again and tried to find out what had been the cause of all my issues. If the machine wasn't faulty, then what was it? I found the answer. The problem was the pressure was set too high. With the pressure being too high it was forcing air into my body, that my body was trying to fight. Not only that, but because the pressure was constant and not set to ease off, so that I could exhale, my body was fighting to exhale against the pressure that was too high in the first place. All this added up to my blood pressure sky rocketing. However, I was not aware of any of this, until after the situation was fixed. It was the extreme high blood pressure that was causing the headache, the pain, the fatigue, the lack of ability to function properly. It was killing me and I had no idea at the time. If I had died, no one would have suspected the Cpap therapy as being the culprit, they would have just assumed it was me and my lifestyle.
So, to sum things up. The doctor just took a guess at what pressure I would need the first time, without testing to find out what the actual setting should have been. He would have killed me, if I had not listened to my careworkers and stopped using it. The added problem of not having the machine set, so that I could exhale made things even worse. If you have experienced any of these issues, you are not crazy as others would like you to think. Find out if your pressure is set correctly for you. And be very wary of any doctor that gives you a prescription without testing you on a machine first to find out what setting you actually need. Also, find out if your machine can be set to ease off, so you can exhale properly and not have to fight to get the air out of your body.
Well, now that my pressure is at 10, and eases off so I can exhale, I am actually getting better and feeling like I have more energy. I still have days that I feel bad, but overall I am seeing an improvement. Every time I wake up with a headache, I panic that the therapy is killing me again. I have stopped using the machine to see if I feel better without it, since the lowered pressure, but I felt much worse, so it's good to know the therapy is now working as it should have in the first place.