Hi, it's brijar back again, only I had to re-register because I lost my old password and I'm at a location where I couldn't check my email for it. How is your boyfriend doing with the CPAP? My dad does not snore to amount to anything (Mom is worse), and he doesn't have noticeable apneas to the observer, but his doctor does want to do a sleep study just in case. I don't think Dad wants to do it, though--thinks it's a bunch of BS just to make money for the hospital. So if you know of a case history where the treatment resulted in recovery of the patient, I would be grateful if you would pass the link along. A lot of the things I read just mention exhaustion--not as severe problems as your boyfriend has. So let me know if you know any good news about treatment. Thanks!
I started reading this forum several months ago because my boyfriend was experiencing symptoms very, very similar to what you are describing. As I read through your post I was nodding in agreement with the description you gave, but I was looking for one specific thing that would tell me whether it was worth posting to you about it, and I found it in your post: Excessive daytime sleepiness. I'mm not going to pretend I have *the* definitive answer for you, but I will beg you to nake a few observations that could potentially lead to some help for your dad. It took me five months to figure out what was going on with my boyfriend who became disabled with symptoms very similar to your dad's, so hopefully, if his problem is the same, you will be able to address it much more quickly. My boyfriend has very severe obstructive sleep apnea. He stops breathing when he sleeps and deprives his brain of oxygen. Because he isn't breathing, he retains CO2, which is a neurotoxin, and because the only way for him to stay alive is for his brain to detect the raised levels of CO2 in his blood, then wake him up enough to start breathing again, he never, ever achieves restful sleep. This triad of issues packs a powerful destructive effect for him, and his first symptoms were the daytime sleepiness, depression, and vertigo/balance problems, and occasional shakiness and weakness when he was very emotional. Like your dad, his PCP put him through multitudes of tests, all of which appeared normal. He had been mystifying doctors and neurologists for almost five years before it was finally figured out. And this was only after he was forced to move in with me for care because the effects of all of this rendered him disabled enough that he could not live alone any more. He's 39 years old. I noticed his earth-shaking snoring first, but then one night, a few months after he moved in, I realized that during the times when it seemed there was finally some peace from his snoring during the night, he was not breathing. The only time he was quiet was when he wasn't breathing. He'd startle in his sleep, thrash around and gasp for air, then breathe a few breaths, stop breathing again, and the cycle repeated itself all night long. I was able to count ten non-breathing episodes in ten minutes, all lasting well over ten seconds each. When he's not breathing, it can be deceptive, because his chest makes motions that seem as if he is breathing, but no air gets in. If your dad is known for his snoring, gasps and thrashes around in bed, sleeps all day, has no energy, gets exhausted by simple things like climbing a set of stairs if he is able to, and has cognitive and emotional problems associated with this illness, then I would strongly urge you to ask for a sleep study for him. I'd also like to direct you to a site where you can get lots of information about this if it seems like something worth looking into. The site is: www.sleepnet.com
My boyfriend's symptoms were aggravated to the point of disabling him after he had a cold/flu, and it seems that the illness probably weakened him to the point his apneas became much worse, or possibly because he was so congested he wasn't able to breathe properly during sleep. He has just started CPAP treatment and is doing well with it, but we have nmo way of knowing if the injury his brain sustained from all this lack of oxygen and CO2 retention is going ot be something he can recover from or if it is permanent.
The vaccine maybe the cause. Sometimes people get Guillian-Barre Syndrome or a variant following shots. Was his breathing labored? You may want to check the GBS website and compare some of the symptoms. (www.webmast.com/gbs--go back 120 days for information) After my tetanus shot, I could not lift my legs because they felt like cement. I was totally disoriented and had a lot of the symptoms you describe. My first neurologist refused to relate my symptoms to the vaccine, so I had to find a more qualified doctor. Some people are philosophically opposed to vaccine reactions. Make sure the new doctor is open to the topic.
Thanks.
jande
Although it's unclear as to whether or not the flu shot had anything to do with his symptoms, I agree that something has happened to your father. The persistence of fever is the sign/symptom that catches a physician's attention and makes it less likely that this is "depression." Rather, it is worrisome for a systemic problem such as infection, autoimmune (rheumatological) disease, or malignancy (cancer). A degenerative neurological disease is also a possibility.
Until your appointment, some things you can do are gather all the lab reports from the GP as well as the actual MRIs (not just the report) and make a list of medications that he's been on for the neurology appointment. If he's still having fevers, get the actual temperature with a thermometer and have your mom record it on a daily basis so that they can objectively see that there is the presence of a persistent fever. He may need a more extensive workup such as a spinal tap, EEG (especially if there's cognitive changes), and more bloodwork. Best of luck.