I think all of us who have had this phenomenon occur need to get together and talk to some doctors. I get constant sinus infections and I end up geting two shots: the antibiotic rocephin and a steriod called Decadron. I get a Zpack to take home. Towards the end of the Zpack, once the sinus infection is mostly cleared up, I feel as if I wake up from this wierd dream state. I'm awake, I'm alert, I can get things done...it is like heaven. Then, it goes away. My doctor had never heard of it...did lots of tests but couldn't explain it. It is so frustrating to be awake and alert and know what that's like again...and then feel it slip away. D
I know I'm making a reply to this a few months after it was posted, so hopefully you'll get it.
I am absolutely curious about you getting Decadron. I thought this heavy duty steroid was strictly used for brain swelling. I'm not being sarcastic; I sincerely would like to know. Do you mind?
also, I see something similar with several other posters. I'd like to share that two weeks ago I read the information for my Flonase (allergies) prescription for the first time in the few years since I began taking it (I guess I became tired of reading so many) and was surprised to learn it was a steroid. I never questioned this product because I asked my doctor by email, which I still have, for a non-steroidal. In the medication info, I read that this steroid, the same as many other steroids, can cause a lowered immune system. This is a double whammy for some narcoleptics. I had almost nonstop canker sores, aches and pains, and acne, and they have all miraculously cleared up since discontinuation. These things can be caused by a low immune system. For those of you that don't know, the double whammy for a few narcoleptics is that some research shows that some cases of narcolepsy are related to a problem (mutation, lack of? I don't remember, but if needed, I have it bookmarked somewhere) with a certain gene that has a lowering affect on the body's immune system. Add the stress of narcolepsy on to this and you have a triple whammy. I'm miserable without my allergy med (it takes awhile to get anything from my doctor, he's seven hours away - I'm very remote) but it's not worth it.
I've been repeatedly tested for EBV, which can be a cause or symptom of mono, chronic fatigue, and a ton of others. I've been told conflicting info by doctors that this can also be related to chicken pox/ shingles. EBV can cause a whole slew of things for a small percentage of people that get it, which is the majority of the US adult population. Check the CDC website. But I can tell you that once you have been tested positive for some of these diseases, it will always show at some level on any subsequent focused tests. The last one I had a year and a half ago has various areas that break these tests down to show whether or not it is most likely a new condition, evidence of past condition, or a re-inflammation, and if so, is it chronic. There were two variations of each of these. It's really ridiculous. I say this because I'm sick of tests.
I have my tonsils, but I have problems with them (sore throats, enlarged).
A few tests that came back clear - the majority of which have been given to me several times over the past 20 years:
auto immune, actually, I don't remember all, but there have been many
I've been incorrectly treated for clinical depression, PTSD, even acute psychosis when I expressed my hallucinations to my doctor. I never told doctors that again until I was finally seen by a sleep specialist who specifically asked me if I had any. I stated in one of my posts that I would tell my doctors (& the therapists that they sent me to) that I was not depressed and they would tell me that I just did not know that I was. After a few years of this treatment, you do become depressed. What's worse is that once a doctor puts that you have a mental illness, fibromyalgia (dx with this at one time - ended up having a herniated disk in neck before N dx'd), chronic fatigue, etc, in your chart, it becomes a stigma that all doctors become aware of and then treat you as a hypochondriac. They start the misdiagnosis, and then treat you like * because of it. Fortunately, research has been advanced in this area since I was younger. You know, when you are pushed into therapy you begin to actually believe that you should be there. I spent years trying to figure out just what my problem was. Although I always thought that I had a great childhood, I became convinced by various therapists that I did not. I trashed those feelings once I realized that N can cause symptoms like depression, and you know what? I'm a much happier person.
Since N is a neurological disease that no one knows definitively for sure how it occurs, I'm convinced that many people will have a myriad of other chronic symptoms. The CDC (at least used to) has info that some cases may be environmental (which could cause the auto immune, as well as genetics). Some infections, illnesses hit people who think that they get better. Research comes out every once in a while that shows some infections/ illnesses that people recover from can end up having long lasting effects on these same people. As an example, which is not related to N, if a kid gets strep throat and gets better without being treated, he can be more likely to develop a certain type of heart disease than another kid that does get treated for strep. When I was a kid, I used to run around in a DDT "fog" that the mosquito spraying trucks would release. I question whether or not this has anything to do with any of my chronic problems, but my daddy definitely had the same N symptoms that I have. But he grew up in an agricultural area where it was not uncommon for poisons to be used.
He did have pituitary tumors. My mother grew up in this same type environment. She had problems with insomnia, and she died 1 1/2 years ago from brain cancer. No, I don't believe that they are related, but I am curious about the environmental effects on a person's long term neurological health.
I don't know if I got way off topic or not, but I am sooo tired and I absolutely cannot go over the other posts to see what it is that started me on this topic. and I absolutely cannot start at the beginning of my post.
Must sleep ...now.