I spent the last 10 minutes trying to figure out where to stick this post... breathing or sleep problems or medication... and finally gave up and stuck it here.
First of all, my asthma woke me up at 4am and it is now 5am and I'm writing this post. So annoying.
I went to see the sleep apnea specialist yesterday. He had a last minute cancelation. He was awesome! He took tons of time to go over everything and explain everything and discuss treatment options.
Basically, my sleep study showed that I don't have very frequent episodes of sleep apnea, but when I do my oxygenation drops down to around 71% which he said is very very low. He said that if I held my breath for 45 seconds it would still probably only drop into the 80s, so he was concerned about that.
He also said that I have a lot of alpha wave intrusions (periods of wakeful brain activity) intruding on my periods of deep sleep. He said this was commonly associated with autoimmune diseases and fibromyalgia (both of which I have).
So I'm going to get started on CPAP, and I'm having my titration study done next Friday. I hoping that the low oxygen levels and the alpha wave intrusions are what's causing my constant headaches and making me sleep 18 hours a day, and the CPAP will resolve this. But I forgot to ask how/if the CPAP will help with the alpha waves.
I'm a little angry though because I'd been asking my GP for months and months if I should have a sleep study done since I'd been waking up feeling out of breath and tired all the time, which he kept brushing off as completely unnecessary. He finally agreed when I started having seizures as I was falling asleep. It's just so frustrating! And I really feel that a lot of it has to do with my age. I think that if a 48 year old came in complaining of my symptoms and asked about a sleep study he would have agreed right away. But I'm 24. How many unusual diagnoses for someone my age (ie AI Pancreatitis and AI Hepatitis and a dozen others) do I have to wrack up before my doctors stop dismissing things that are very rare in people my age? I mean it seems pretty obvious that I'm not your average 24 year old.
I've also been getting very out of breath from even the simplest activity. I'll put on my socks and then have to lay down for a few minutes until my heart stops racing and I stop panting.
The sleep apnea specialist was concerned that it might caused by the Methotrexate. He said that Methotrexate (and also rarely Plaquenil) can cause lung problems. Has anyone else heard of this?
He said he'd discuss it with my uncle (who is also my Pulmonary Specialist), so that I could get tested to see if the Methotrexate is causing it. Or if not, what is.
He also took a look in my nose and noticed it was bright red and looked infected. He proscribed Bactroban, but when I got it from the pharmacy I noticed (after using it once) that it said that this kind is not for nasal use and that there's a special Nasal Bactroban for that. So now I have to sort out, if a mistake was made and if it was the pharmacy or if the Rx was written wrong. I hope it wasn't detrimental to use the topical only version up my nose one time.
Finally, my right ear is bugging me again. It hurts and feels like there's a lot of pressure in there, and I get a sharp pain in it when I blow my nose. So I'm hoping my ear isn't infected too, especially since he mentioned that my nasal infection could be MRSA and I might want to get it cultured.
Anyway.... that's all for now. I think its enough
-Lauren
