When you had to change AED's...

[forward2007]

Here's a question for those who's Epilepsy was under control enough that they were able to keep a driver's license for a long time until the day came that your medication stopped consistently preventing seizures and you temporarily lost your driver's license.

#1 Has anyone and/or their Dr. made the decision to change AED's as a result of their original medication no longer controlling their seizures as well as it had in the past?

#2 I am curious how long it took you to find another drug that worked once the decision was made to change to another AED.

I realize there is a certain amount of luck involved in finding an AED that works because all drugs react differently in each person, but I am still interested in hearing any stories about what it is like to try and change medications. I have been on Tegretol for over 20 years but for whatever reason, Tegretol doesn't work as well for me as it used to. I have to admit it is a little scary thinking about the possibility of changing medications, but I think it is my best bet in getting my seizures under control again.

I am going to the Dr. Friday and I would be shocked if he doesn't recommend that I try another medication (I have lost my driver's license due to having a seizure recently so there is nothing for me to lose).

Another reason I am asking is I am thinking of taking some time off of work while I try and find the drug that works to control my seizures again because I am not in a hurry to have another seizure at work if the first new AED I try doesn't work. My boss's boss has all but ordered her to call 911 if I ever have a seizure at work again.

 

[RobinN]

Rebecca has tried four meds. We can't seem to get past the side effects. She hasn't lost her driver's license, but has to stand by and watch while others are getting theirs.

Can't you get a letter from your neurologist that states what should happen if you have a seizure at work? Ours that is on file at Rebecca's school says that 911 does not need to be called unless the seizure lasts longer than 5 min, or is of the statis variety. Wouldn't that be your right to have that information on file at work? I understand the "leave" from work though.

Have you considered any other alternative therapy other than meds?

 

[Bernard]

Since I have known her, Stacy's luck with med changes have mostly been negative. Seemed like each med change made things worse until she stabilized with Dilantin.

 

[Grneydgurl]

I have been on alot of different meds because of side effects. I am hypersensitive to medcations. Alot of companies have to call 911 for their protection...Well that's what I was told at one employer and it was a health insurance company. The seizure I had two wks ago, they got scared and that was their first response. The one thing that I have experienced in my case is, I can go months without an episode when switching meds. Either it be a side effect or a breakthrough seizure (like I had on Carbatrol). You could try and file for an FMLA (family/medical leave of absense) which would secure your position for 12 weeks while adjusting to new medication.

 

[forward2007]

I went to get my second opinion yesterday and the Dr. agreed it would be in my interests to stop using Tegretol XR and try a new medication. He wrote me a RX for Keppra. I'm supposed to take 500 mg BID for one week and then 1000 mg BID if I don't have any problems with side effects. How long is it usually recommended that you take the new AED before they want you to start dropping the dosage of the old AED?

 

[brain]

Don't get me started on AED changes! I could
denominate the entire thread on that subject alone!

And it's not just AED changes but the most
abused and misused line of ...

"Here ... let's try this ...."

**If I hear that one more time ... I'm going
to scream, and y'all will hear me across
the Universe and the Giant Hubble Telescope
will shatter and break!

Ok Ok that might be an 'exaggeration' there,
but you get my drift!

Not only Changes of AEDs, but also Combos
aka Cocktails - and if I hear ....

"Well.. let's try these two (or three).."

See ** above

This would be hilarious if it weren't so
pathetic. I don't mean to sound so obnoxious,
ornery, or rude. But one can only take so much
when your patience begins to wear thin.

But fortunately the meds or cocktails I'm on
are working to a degree, however my Doctors
are wanting to either ax out an old AED (not
the newer AED) and replace it with a newer
AED or raise the old AED.

:soap:

*sigh*

Does this ever end?