Rebecca,
First, know that your Dr. medically has to tell you to get back on you
meds because it would be poor medical advice when you are having active
seizures not to tell you to be on them. Be aware of this as well, if
you choose to go against your Drs. orders and something were to happen
(say you end up in the ER) your insurance company may not cover it
because they will claim it happened as a direct result of you not
following your Drs. orders. Yes, I agree we know our bodies and our
illness better then our Drs. because we know how our own individual body
reacts, but not following what your Dr. says can lead to lead serious
trouble for you down the road.
That being said-this is what I would do. First, get a new Dr. Are you
seeing a neurologist or a specialist in epilepsy? Second, if you can
get to a specialist in epilepsy, get to one, if not, get a new
neurologist. Part of the Drs. job is not to do harm, that means if your
meds are unliveable for you, they should be willing to prescribe
different combination's of them. Trust me I understand this part. I
tried all kinds of combination's of meds to find one that was bearable.
I have serious side effects to any med I take, so finding an acceptable
level of side effects was nearly impossible, and in the end I had to
simply accept the side effect combination that was the least horrible.
Lastly, how long have you been on 3 meds? If you have been on 3 meds
for any length of time, several months, and are still not controlled
your Dr. should be ordering a 24 hr. EEG for you, and this should be
done soon. There are those of us who will unfortunately not gain
control with drugs alone. That's me, I was on high doses of 3 meds with
little control (only less seizures a day, but never none in a day).
This went on for 4 months before my Dr. looked at me and said , very
frankly, "At this point we have determined that medication alone is
simply not going to be enough to control your meds, we have to consider
other options". At that point I was already on this board, so I knew
what she meant. Scary yes, but not as scary as the idea of never
gaining control.
Be frank with your new Dr. Say "I am not controlled, the side effects
are unlivable and unbearable, and I desperately feel like something has
to change. What can we do?"
Kelly
On 7/20/2011 3:02 AM, Rebecca wrote:
> Her answer was to get back on all the meds ASAP. Do they know our bodies and side effects as well as we do? I wonder how many meds and side effects she has to deal with. I am going back and forth in my mind on what to do. Help
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