"Mary Fisher" <mary.fisher@zetnet.co.uk> wrote:

True, but lots of people are taking the same meds and the chances of
someone having the same problem with humidity is relatively high.

Good.  Being asked to justify why I'm posting an inquiry here is
offensive.

Have you actually dealt with tech support before (I was talking about
them in this passage, not physicians)?  

Actual transcript of a discussion:
TS: What's the problem?
me: My computer spontaneously reboots.
TS: What's it doing now?
me: I'm sitting here surfing the web while I've been on hold.
TS: Well, it seems to be working fine now.
me: Well of course it does, it only reboots every hour or so.  The
chances of catching it happening during the time we're on the phone is
pretty low.
[back and forth for a few minutes]
me: Hey it just rebooted!
TS: What's it doing now?
me: It's going through the startup, initializing Windows, etc.
TS: Well, it seems to be working fine now, call us back if there's a
problem.

Granted, this is an extreme example.  This person clearly really was an
idiot.  But I also had a neuro who told me (on the first visit) that my
only possible alternative to carbamazepine was phenobarbital, which is
patently false.

But my point is (and the reason I made the analogy with physicians), if
you keep getting wrong answers from people who are supposed to be
trained on the subject, and consistently get as good or better
information from people who aren't formally trained on it but have much
more real-life experience, then why not see if you can save $60, being
forced to take a day off from work, and some irritation and ask the
latter group first?  It doesn't necessarily mean the former are stupid,
or that you should dismiss them completely, but when you're dealing with
a field that has so much information that no one can be up to date on
it, why not do your own research on the narrow area you need to know
about?

Where do you think the NIH gets their information?  As far as I know the
FDA (Food and Drug Administration) relies almost entirely on
manufacturers for drug information (a source which is not always
objective, and something which has caused a lot of problems especially
with the right-wing ideologues currently in charge).

Then why are you arguing with me?  That's the same thing I said.  You
said I shouldn't ask here because no one here would have experience or
knowledge of my condition, but that's obviously not true.

I don't get why you only seem to be going after me.  Ole did the same
thing asking about concentration as a trigger.  Asking if other people
have had similar experiences is what many of the posts here are about.

That's exactly my point.  If I ask my pharmacist if humidity might
affect the effectiveness of Lamictal and they say no, and I say "okey
dokey" and forget about it, if it then turns out that humidity is the
problem then it's partly my fault for not investigating whether they
were actually right or not.  If you don't expect perfection then you
can't take for granted that whatever a person says, even in an area they
are trained in, is correct.

Because I'm looking for other alternatives to try that I might not have
thought of (especially since I can't really test the humidity
hypothesis).  What is *your* problem?  Why do you have so much
difficulty understanding that?

Karl

Alright,

I'll throw in my plugged nickel's worth and nobody take it personal.
I'm not stupid, I don't brag that I have a B.S. in B.S., etc.  I have
dealt with pharmacists and neurologists alike that don't know enough.
Nobody, and I mean NOBODY knows enough.  I have learned this first hand
from dealing with neurologists for 30 years.  You have to research alot
on your own and then share it with an open-minded neurologist (find
one),

My neurologist is one of the foremost in his field and there is nobody,
and I mean nobody, that has ever said anything bad about him as far as
I know. This is well known among people, that nobody ever says anything
bad about him.  He is the head of seizure research at Vanderbilt
University in Nashville and only good things are said about him.  But
he is always admitting he can learn.  For example, I researched and
found out what triggers my photosensitive seizures.  I shared it with
him.  He thanked me for sharing it with him, he is originally from the
Middle East (Lebanon), and is not proud to admit he can learn.  I have
worked with him for 11 years and he is the only one who got my seizures
under control to an acceptable level.  He works with VNS, and
immediately knew I shouldn't try it.  He wasn't financially motivated
like some other neuros  I've experienced.

He worked with geneticists in Montreal and found a theory (I have
mentioned before on this forum) that everyone on my mother's side of
the family tree with a seizure disorder has a certain deformed
chromosome.  He has found the same thing in two more families and would
like to find others.  AND he says this is just a theory.  He now has a
genetist on his research team at Vanderbilt.

In my experience (and I don't know it all), I've learned the hard way.
I've put up with alot, and I mean ALOT, of incompetent neuros and some
incompetent neuros that were stuck on themselves being so smart.  I
have met nice ones who were incompetent, and rude ones who were
incompetent.  AND I put up with alot (and still do) of pharmacists that
make me wouldn't mind giving a haymaker upside their noggin if I could
get away with it. It took me a long time to find my present neuro, but
one has to look for somebody like this and stick with him or her, even
though there may be sacrifice involved.  I just find, while talking
with others and through my experience, one has to find a neuro like him
who works to learn and is in a big instituition, and not out in a
smaller area (like others I know) who just want to try something and
make the money.

There, I said it, eat me alive.  Its just my advice and opinion. Its
not meant to be negative, just positive.  Even if it comes from a
trouble-making Tennessee Redneck like me.

E.B.