For over five years now I’ve been suffering from extreme fatigue. What I mean is I feel the energy literally leave my body like a gas tank going from full to empty in an instant. The scary times are when I’m driving and nodding off in the car. I can be driving less than 10 minutes and still doze off. Most often my kids are in the back seat. I do everything possible to stay awake just so I can make it home before I collapse. It’s getting to the point where it’s a safety issue. I fear I will crash with my kids in the car and kill us all. This cycle happens at least 4-6 times a month where I can barely keep my eyes open yet alone function. This is not normal.
It takes me days of 12 plus hours of uninterrupted sleep just to be back to “my normal,” which is always being tired. I’m tired all the time even though I take medications and supplements to help with the fatigue, but it doesn’t even touch the issue. So tonight I get to go into the sleep lab and figure what the heck is going on with my energy levels and sleeping patterns.
First sleep study:
I have never done a sleep study in a lab. I have done sleep studies at home but they showed minimal results. As I’m looking over the paperwork and filling another medical packet the one thing that stood out to me was “bring a hat” for the next day. It made me chuckle to think I would need a hat because my hair would look like Medusa. Apparently, you will have so many electrodes on your head and body that it will leave you looking like a hot mess.
Well I came out of this study definitely looking like a hot mess! The study itself was easy, but difficult to fall asleep and stay asleep. Funny because it was a sleep study. I was attached to so many wires and heart/breathing monitors it wasn’t very comfortable. To top it off they added a cpap mask to the study. So to sum it all up it was exhausting. The results showed I had mild to moderate sleep apnea and I was immediately prescribed a cpap machine.
Now fast forward 3-4 months and I’ve been using my cpap machine every night. The fatigue is still affecting me and I’m still falling asleep at random times of the day. The sleep specialist has looked over all my levels with my machine and everything is within normal range. At this point I’m starting to get very frustrated because I’m not getting anywhere regarding my fatigue.
This leads me back to my General Practitioner (GP) who then postulates that maybe I have narcolepsy. Now this is where it gets interesting. In order to get that test I have to have done a lab sleep study and show minimal improvement with cpap machine. Well check that off my list. Even though I’m not improving my sleep doctor insists to continue this path and add a stimulant, instead of do the narcolepsy sleep study. When it comes to my health I’ve learned that a band aid is not going to work for me. Having been diagnosed with Lupus has made me very assertive in my care plan. So I do the only thing I can. I go to my GP and get him to plead my case!
My GP finally convinces my sleep doctor to run the test, however I have to do another sleep lab study before they will do the Multiple Sleep Latency Test (MSLT), which specifically tests for narcolepsy. Insert more frustration here!!!! This is where I’m thankful I have great health insurance because these tests are not cheap.
To add further frustration the sleep doctor wants me to stop taking all my meds that cause fatigue. I understand the reasoning behind the med titration but the fatigue has been there even prior to my lupus diagnosis. So they will be taking me off all the meds that help regulate my lupus. I wonder if I could send them a bill of what that will cost me, especially if I go into a flare? But in the end they wouldn’t allow me to take the test unless I did the medication titration. The level of care I get with my specialist is subpar and downright ridiculous at times. I have to make concessions that can potentially make me worse. I’m not very happy about it at all.
Another reason why Idaho Specialists are lacking in health care here. They try to fit you into this diagnostic box they created. If you fall outside that box they have no idea what to do or how to treat you. They try to convince you to take the band aid and never address that there might be another problem. The only way to get results is having one doctor on your side and I’m super thankful I found my GP when I did!!!
So the next step in my journey of battling fatigue is to get these test ran. Fingers crossed I can get answers.