epi dr visit

[doihaveepilepsy]

went to see the epileptologist dr on friday and she decided that she finks it is epilepsy now, thats after 18 months of having seizures although she still hasnt given me a definate diagnosis, so not on any medication (which im glad about in a way but not in another way) she did say if i continue to have seizures in my sleep then i should contact her because i need to be on medication. Had seizures in my sleep and while awake since they started so i think that i may up taking medication which i was initially reluctant to do. i have to go in hospital again, so i am being put on a waiting list for a video EEG at a specialist centre for epilepsy not very keen on the hospital stay especially because i am going to be confined to a room for between 5 and 10 days which will be so boring, and still i may not have any answers at the end of it. i have already had 3 eegs done two 1 hour ones and a 48 hour one so i dont see why i have to have another one but hey they are the dr's and apparently they no best so i will just have to grin and bear it i suppose.

again the waiting begins again

[tinasmom]

It sounds like you really do not like this doctor. Is there another one that you could see for a second opinion? You should make sure that your doctor is listening to what you have to say. You're the one that knows your body the best and what you think is the best course of action for your health. Have you discussed the way you feel about meds with your doctor? If so, do you think he/she is listening to you? There are good doctors out there that will listen to you and work with you. We are on our third neurologist since August and I really like this one.

[RobinN]

DARN IT!

Have you already had the video EEG done? If so they might want to provoke seizures.
Have you made nutritional changes? My suggestion would be to experiment with dietary changes, to see if you feel better, because once you are put on medication you won't know for sure. There will always be the doubt that it is the meds involved.

I hope that you are seizure free while you wait

[doihaveepilepsy]

this is a new dr i only seen her for the first time on friday she is ok, but at the minute i have a dislike for all dr's because still after 18 months i havent been given any clear answers, as for the medication, i do want to take it if it will control my seizures but i dont want to take it if they get worse or have bad side effects, i dont really no what to do anymore, im just fed up of waiting everytime i go and see a neurologist or epileptologist dr they say pretty much the same thing and say they are reffering me somewhere else which usually invelves about a 4 month wait or so, and in the mean time my life has been put on hold so its a constant nightmare and im fed up of waiting and suffering really. sorry to be so negative.
everytime i go to see the dr too the add more restrictionc on my lifestyle which i do understand why its for my own safety but still i am 21 years old and i am not really living i am just existing.

[tinasmom]

I can understand your frustration because it sounds like you are just being shuffled from one doc to the next. Unfortunately with meds there are always side effects, but a lot of people never have any side effects. This is just such a trial and error thing. Nicole, my granddaughter has had behavior problems on Lamictal,which is very rare. On the upside, I'm sure once everything is figured out, you will not feel like you are just existing. Live your life to the fullest and always try to be happy. As hard as it is right now, I believe that God only gives us what we can handle. Sometimes it seems like these mountains that we have to climb are never ending, but there is an end.

[doihaveepilepsy]

thanks tinasmom for you support i really do hope it ends soon or at leat dr get my seizures under control and then i can get back to how i used to be very happy and out going. thnks so much

[tinasmom]

You are very welcome. The whole reason we are all here is to support each other and help in any way we can. I know that I have found a lot of support and knowledge here. It's so wonderful to have this site, I don't know what I would do without it.

[Bernard]

The video EEG test allows to match up visual confirmation of behavior with EEG recordings. It can help them make a more definitive diagnosis than just an EEG alone.

[brain]

Ditto on the video EEG postings!

I'm sure you're very anxious to
find out and put an end to all of
this but this is the hardest part,
everything is so slow going; and
patience is the key - unfortunately!

I totally can understand fully
about being restricted and it
almost feels like you're a dog that
is chained to a doghouse! With
restrictions, limitations, and a
bunch of "No No's" and "You can't
do this" to "You can't do that" ...
I had to go through all of that,
and STILL going through it - and
my vast list is getting to be a
little bit narrow, when they tell
me "You can't breathe" - I'll
know they went too far!



But kidding aside - the Primary
Concern and Factor here is:

SAFETY!

Since you've posted you're on the
waiting list for the video EEG, your
own Doctor has SAFETY in mind
and is concerned about your own
well being! If your Doctor didn't
care, then such wouldn't have
been discussed! So you have a
good Doctor ...

NOW - HERE'S A WARNING SO
THAT YOU WON'T BE SURPRISED!

DO NOT BE SURPRISED TO GET
THIS LAST MINUTE NOTICE THAT
YOU'VE BEEN SCHEDULED FOR A
video EEG!

There's been many times when
one has been told it'll be months
before you'll have this or that
performed, and all of a sudden,
one month later - *BOOM* -
you get this call - and you're on
a roll!

EXPECT THE UNEXPECTED!

Just be READY TO BE READY TO
GO!