choosing a medication

[sundi712]

Hi everyone. name is S Bradshaw down in Atlanta. I've had epilepsy
for 11 years since I was 14. Two years ago after having a car
accident because a seizure, I was at a point where I knew that I had
to be more knowledgeable about my condition and to communicate with
others. It's taken me two years to get the point where I am making
the time to do this...
the reason is because my Lamictal (from Tegretol), which I started a
year after my accident seems to no longer be controlling my seizures.
My doctor and I have come to the agreement to try a new medicine.

I have enjoyed our relationship when discussing about meds about my
current situation has caused me to question his method.
He is now giving suggestions for ME to make a decision of what
medication to take, since he has mentioned three medications
(Zonegram, Topamax, Keppra). He has suggested Topamax, which I have
expressed my questionable side effect of kidney stones. He recognizes
my concern but I am now feeling that he has begun to "back off".
Basically I feel like I am being handled a party tray for me to
decide what snack I would like to try.

I would like your opinions of whether I am thinking too much into
this or if this situation is something to question. Also, if someone
feels that they can relate to my current feelings, please provide
input.

I am really in need of help right now for opinions and I thank you
ahead of time for any response(s) that you give.

Thanks!
SB

 

[Bernard]

Hi sundi712, welcome to the forum. :hello:

Most doctors don't give their patients any input into the direction of their care. I would take your doctor's offering as a measure of respect - empowering you to take some ownership of your care.

All meds have side effects. You sound an awful lot like my wife when I first met her. She didn't want to take any drugs at all because of *potential* side effects.

I'd suggest trying the doc's suggestion and see if you have problems with it (or success) before dismissing it.

In the meantime, there is a lot of info here in the forums - both on meds and non-drug alternatives. Maybe you will find something that you and your doctor can pursue as an alternative (or complimentary) treatment.

 

[brain]

:hello: Sundi712

WELCOME!

I had a Neurologist who was just like
that, only that he would give me 3
options. He would tell me three medicines,
the side effects, the cost, and how long
it would take for it to work, the lab work,
the effectiveness, and so on.

He gave ME the option to pick, but he
also said "As a Doctor, I prefer this
medication here, while costly, and it
does take several weeks for the medication
to work, the side effects are not as great,
but we have better control overall." Most
patients selects this option here, and
suffer or tolerates the side effects, but
I don't like it, but he respected your
choice and your body and he knew it
was YOUR MONEY.

I went along with his decision and that's
why I liked him so well, he was blunt, he
didn't hide anything. He told you what to
expect and the whole works. He will even
say "I will expect you to have seizures for
a little while until this medicine begins to
build up in your body."

We had a great rapport until we had to
relocate out of the area.

If you are not comfortable, then look for
another Neurologist / Epileptologist, or
talk with your Primary Doctor in finding
another one.

 

[Birdbomb]

Welcome sundi712

My Rheumetologist has the same attitude. Gives me a list of medications to pick from and let's me choose. The trick is learing all you can about the drug and then decieding which side effects you are willing to deal with.

Keep in mind even thought there are laundry lists of side effects with every medication out there, that doesn't mean you will experiance it. It's all individual.

 

[sundi712]

WOW thanks for the quick responses!! I've finally found a useful forum.I'll go ahead and reply to all of your responses at once.
We have discussed these three medications and he has told me the main
side effects of each. He knows that I'm one to do research before
making a decision like this so he would like me to call and tell him
my decision on Monday so that they can submit the prescription. He
wants to get me on another one now because the Lamictal isn't
working, and of course this will be a gradual change. I had seizures
@750MG and felt dizzy when going up to 800MB. Two weeks ago I had a
seizure on 800MG. It's these happenings that cause the frustration.

I fell a little more comfortable now after your responses and
browsing other online forums.

Thanks a lot !!

 

[brain]

Sundi:

Sometimes it takes some time to find
the right AED (med) that will work. It
did for me and for many others as well.
Sometimes people have to take 2 AED's
or more to gain control, but the aim and
goal for Today's Neurology is to keep it
down to "monotherapy" (single medication)
rather than "polytherapy" (multiple meds).

I hope they find one that works for you;
thoughts and prayers abides! And glad
we were able to help you!

 

[Bernard]

WOW thanks for the quick responses!! I've finally found a useful forum.

:brock:

It's always frustating playing trial and error whilst seizures are occuring uncontrolled. Stacy (my wife) has had quite a rollercoaster journey herself getting to the point where she is now (99% control with Dilantin, diet and sleep regimen).

What really throws a monkey wrench in things is when the seizure patterns start changing.

 

[sundi712]

Yes and this why one reason that I am unsure about the change in medication. Another change in meds has caused frustration but reading and getting responses on different forums has made me more comfortable.
If I have correctly perceived how to choose meds, the only basis of choosing are based on the type of seizures that a patient has (generalized, partial). It appears that the only other way for a doctor to choose a medicine is based on past experiences with previous patients.
I know there definitely different views on this and I would like to "hear" them.

 

[Elisa]

Have you talked to your doc about staying on the Lamictal and adding the Topamax? It sounds like your having break through seizures, so the Lamictal is still helping a little. Why take it away all togerther.
I've had great luck with Topamax and Lamictal together. Neither work all by themselves, but togerther they work like a charm.