Posted by bedhead on August 28, 2008 at 14:46:02:In Reply to: narcolepsy and metabolism disorder? posted by Kellyj on July 13, 2008 at 16:46:14:
Just out of curiosity, it'd be great to hear more about your
history (what tests have been done, what the official diagnoses
have been for you).Some other people have posted on this forum regarding
Hypocretin/orexyn which may provide clues to to links between
metabolism/sleep regulation (I'd say more, but my
understanding is rudimentary at best). It's a shame there is no
"search" function for the forum, but this post, in particular:
http://www.sleepnet.com/narco28/messages/939.html
may be a good place to start.My own experience is that prior to being tested for N., it was
thought that I may be diabetic or hypoglycemic, and blood tests
were done for those disorders, among a slew of others. All of
these tests seemed to come out normal enough (aside from one
where my sugar seemed a bit high, and another where my
testosterone a bit low; both of these were followed up on, but
ultimately nothing proved abnormal enough to provide too much
concern for my GP, and did not lead to any diagnosis).
He then sent to a specialist at a sleep center where (after more
tests, including an overnight stay) I was diagnosed as
narcoleptic.Like you, I need to eat "often enough", which for me means
plenty of snacks in addition to regular meals. If I don't eat when
I start craving food, I can quickly become weak, and yes,
delirious too--PLUS, if for some reason I am unable to get the
food as soon enough, I also start to feel nauseated, as well (the
nausea subsides after I get food into my belly). Sometimes,
particularly if I have too early a dinner -- I wake up in the
morning (sometimes in the wee hours), SO ravenous, it's insane.BTW-- I eat A LOT, yet have always been fairly thin. This, by the
way, has led to at least one friend being concerned that I might
be bulimic (which is most certainly not the case). I think that
there have been some other posts by people who have had
seemingly slower metabolisms/problems being overweight, so
while it does seem that there may be some link between
metabolism/sleep, it seems that there must be some variation
(or perhaps my appetite is an unrelated anomaly).Oh, and about my N.: I was prescribed Provigil last winter after
my diagnosis last November. To be honest, the whole trial
period is now a miserable blur. I felt terrible. Unlike you, I don't
recall feeling speedy (but as I say, it's a blur now!), but I do
remember feeling very out of it, very foggy, was forgetting
words, was still tired, but with a new irritability (which could be
attributed to the drug, or to my dismay at it not working-- who
knows), incredible headaches that did not subside: all in all, it
did not work for me. Unfortunately, I can't recall if it affected
my appetite much.I am now prescribed dexedrine, which seems to help a bit more
(and with fewer side effects than with the Provigil), though it has
not been a total solution. I am still very tired most of the time,
still get sleep attacks, and funnily enough, it has not decreased
my appetite at all. However, I feel like the awful feeling I get
when I need a snack comes on a bit stronger now than it used
to-- like when I need food, I need it IMMEDIATELY.Don't know if you can relate to this, but hope some of this helps.
Ta