the roller coaster

[paradise survivor]

Hi folks- this is new for me. Not too many people know I have the E. I was diagnosed about 10 years ago although there has been a zillion tests and many md's we had a lot of questions and few answers. After a nightmare with Topamax I tossed the whole med thing and just recently got back on the horse so to speak. Unfortunately a month into it the mood swings have become more than I can stand so after an argument with my doc he said stop the med, sooo I'm back to square one and waiting for the blackout. Is there any med that doesn't make you nuts or forget what planet you are on?

 

[Bernard]

Hi p.s., welcome to the forum. :hello:

All the meds have one side effect or another. Of course, everyone is different too and some people tolerate one med better than others.

My wife could not handle Topamax at all.

 

[brain]

Is there any med that doesn't make you nuts or forget what planet you are on?

:hello: Paradise

Phenobarbital - you had a choice either to
have a will and then give it to me + it sent
me beyond the "cuckoo's nest"

Keppra - I had no desires to be in competition
with Michael Jackson aka Whacko Jacko; put
me into a state of psychosis.

Tegretol & Trileptal (they're related) - Evil
Knevil and his Son couldn't win against those
two. I experienced things beyond Twilight Zone.
I'd rather date Freddy Kruger or Jason!



But as Bernard says it best:

Everyone is different

It's a fact, all of us have unique bodies, and
what works wonders for others may not work
for us. What could be a nightmarish hell to one
person could be heaven on earth to another.


FACT: A lot of people aren't able to tolerate
Zonegran at all or they experience too much
side effects of it or experiences side effects
of it; I take Zonegran and I don't experience
any side effects of it at all.

That's just an example.


Patience is the key to finding the right medication
or medication combination aka cocktail that will
work.

HANG IN THERE!

 

[RobinN]

Hi folks- this is new for me.

Join the club. I have been dealing with this for just over a year. It is my 15 yr old daughter that has seizures. We have had a rough go of it with meds so far. She is trying her fourth now.
Have you looked at the alternative suggestions?
We are also working on diet (not so easy with a teen), and hormonal therapy. Trying to note triggers and monitor them. Not an easy recipe, but gives us a direction.

 

[POSITIVEPERSON]

Hi Paradise Survivor: I am going on 52 yrs old , and have had epilepsy since I am 11 yrs
old. I have tried all the meds available in Canada and the STates. So I moved on to homeopathy. Been using using homeopathy for 2 yrs so far and happy with it. It sure isn't like the epilpesy meds making you high, as you adjust. I also follow the Gard diet .
If you would like some info will be happy to answer your questions.
Riva

 

[Nancy]

Hi paradise survivor ~ Nice to meet you.
There aren't many - maybe any - AEDs that I haven't tried. I'm currently taking Topamax and have been since it came out, along with Trileptal. Except for being too sleepy most of the time, I'm doing fine.
I did OK with Keppra.
Zonegran? YUK ..... I called it Zoned-out.

I hope you find something "good" for you very soon.

 

[paradise survivor]

Today's Update

Wow- I had no idea there was so much support just waiting for me to reach out and type for! Thanks! This has been a tough month even after a long ago diagnosis, it is as though I am starting all over again with the full EMU study, PET scans, CT, MRI and neuro psyco testing. I will be the glow stick for Halloween. I did get to finally talk to my doc's nurse who has significantly better communication skills and 'we' decided to go 'clean' till for the next 2 weeks then discuss options. Still kinda sketchy about those options though. My big worry is whether or not any damage is done if I just leave it alone and deal with the seizures as they come or am I frying my brain one event at a time?

 

[RobinN]

PS - I have been answered both ways. One neurologist said that the seizures have not long term effect. Yet I read that if they go on unchecked, testing has proven that the brain can change over time. I would think that the untimate goal is to be seizure free, and I do hear positive results from some AED's. Yet as you have found out, and we are too, the meds can be worse than the actual seizure.

I personally believe there are other alternatives. You just need to search, ask, learn, and make other choices if necessary.

I like the visual of a human glow stick though.

 

[Zara]

There are some positive routes you can take... I'm not sure why they don't use those routes as it would make much more sense to use them. The problem lies within the technology itself you see.

 

[Bernard]

My big worry is whether or not any damage is done if I just leave it alone and deal with the seizures as they come or am I frying my brain one event at a time?

My understanding is that a single seizure by itself does not cause any "damage" in the sense of permanent cognitive impairment, but seizures over time can cause the brain to "learn how to seize". Neuronal pathways excited during seizures get strengthened and make it easier to seize again over time (ie. kindling).

 

[brain]

Zonegran? YUK ..... I called it Zoned-out.

I hope you find something "good" for you very soon.

:lol: Nancy - my son calls it "Zone Alarm",
as he keeps getting it mixed up with my
firewall - ZAP - Zone Alarm Pro ...



My Neuro and Epi thought that was funny.