Switching meds.

[Melanie]

I've taken Tegretol my entire life. I got on the generics years ago and they work just fine as well. Years ago, they tried to get me off. I ended up in the hospital not long after that where I got pumped full of medicine for that. Anyway, I wonder if that dind't cause me to have a seizure the next week. Anyway, the doc said I needed to say on medicine the rest of my life. However, my EEG as of 15 years ago said I had no Epileptic signs.

Meanwhile, ever since I tried to get off Tegretol that one time and got back on so suddenly, I've had horrible side effects. I'm sick of it. I'm seriously considering asking the doctor if I can switch meds, but I'm scared they won't work well. Any ideas?

 

[epileric]

However, my EEG as of 15 years ago said I had no Epileptic signs.

An EEG doesn't always determine if you have seizures. Some are only visible under certain conditions (like when asleep or under a strobe) & some are not visible at all.

 

[Bernard]

I agree with Eric. A clear EEG just means no epiletiform activity was recorded during the time the EEG was monitoring. It doesn't mean there is no epileptiform activity ever.

As far as ideas... How long have you been experiencing the bad side effects? Sometimes the body just needs a while to acclimate/adapt to the drug. If that's not the problem, you may need to change to another drug (or get proactive and possibly reduce your dependence on drugs altogether).

 

[Melanie]

Bernard,

I'd have to go a year without my license to get off the meds. I tried to get off before. I had another seizure, and that's when all my problems began. That was 15 years ago. I haven't had problems every second, but I'm fed up with the problem. My doctor today said he hasn't heard certain types of complaints about Tegretol and suggested instead to take a second medicine. I fought using more meds as long as I could, but I think it's time I gave it a try.

I do like some of the listed ideas though. It certainly can't hurt to give them a try. Maybe try to get my father to try them too. He takes Dilatin and still has problems at night.

Quick question: It wouldn't let me post just now because I was trying to post an "image". Is quoting considered an image?

 

[borgolibero]

I tried Tegretol about 20 years ago, it change some values in my blood in a way that my doctor didn't like, so I switch to depakin and then added pirimidone, with good results. The switch must be made according to doctor and to me did not gave troubles. Hope you too.

 

[RobinN]

Hi Melanie - Welcome
My daughter was on Tegretol. It was her first AED that was prescribed. It did not sit well in her system. Caused terrible vision problems.

I am really concerned with your comment that your doctor wants to put you on a second med. Do you mean he wants you to take two? I have read that it is highly recommended that those with seizures try monotherapy first. Trying an assortment of the different meds available, before attempting to add on others. I really don't think they know enough about the reactions of one medication in an individual patient let alone two meds in a persons system. I highly suggest that you not get on the double whammy before you try other alternatives.

I know it is not for everyone, but my daughter is med free at the moment. She is not driving, but her quality of life is far better than what she experienced on the drugs.

I would do some more reading on the addon drugs before saying okay.

 

[brain]

Something to think about ....

I agree with everyone's postings below:

Plus I want to add on this:

• Just because they didn't capture a seizure on EEG does not mean you do not have "epilepsy", it just means they were not able to capture anything at the moment. There are many people with epilepsy who are in video EEG's in Hospital - for days and weeks ~ trying to capture seizure activities! So just going in for a 20 minute or 1 hour EEG is not going to prove anything nor is a "sleep deprived" EEG run either!
• If you have a history of having abnormalities (on your EEG's) the chances are ~ you most likely have epilepsy. Even kindling or kindlings reflecting on EEG's can be a surefire meaning that a seizure will soon follow, but not always. (Note: I have had kindlings with no seizures, and kindlings that had seizures following - both recorded)
• Some people, they are easier to record than others.
• If you have a genetic lineage of epilepsy, there is a risk factor involved if you had seizures in the past; so this must be done slowly and be monitored. Bernard has information on "RAMP DOWN".
• If you have been seizure-free for a long period of time ---> there can be a flip-side of the coin: It means that the medication is working, why mess with it? And secondly, to make a move on to another medication can be a risky move; it is a known issue for individuals who have went on to try another medication and it failed and when attempts to return back to their old medication, it no longer worked! In turn, it meant a whole tirade of finding a brand new medication or medications to "fill in the gap" if you were to sustain seizures all over again.
• If you were properly in the titration (RAMP DOWN) in the process, and no seizures - it is worth the States Mandatory Law and wait. For it is for your own welfare and safety as well as it is for others. Consider this fact, "WHAT IF"; you were driving and had a seizure and killed/seriously injured/maimed someone else or yourself? Would you be able to live with that? That is, if you made it alive? Not only this, it puts the Doctor into trouble as well. So patience plays its part.
• Having epilepsy can be a major PITA, but you don't have to let it run your life! Slow and easy is the way to go, and if all goes well ~ it will all be over before you know it, and if truly seizure free - you will be glad and thankful for all that you had endured patiently. Because if in the event if it did not work out, then you would know the answer to all that has been posted above.

A lot to swallow here. I've had to live through it
all; endured many AEDs, and in fact
I surrendered my own driver's license on my own
and no one advised me to surrender; I knew that
I knew that I knew my driving days was over with.
My seizures were "poorly controlled" and I could
not bear the thought of having a seizure while driving
and who-knows-what would have happened? I
shudder the thought!

While I hope it all goes well with you and on your
end; whether the move to remove your medication
or to move on to a newer medication. Either way,
I am still a strong advocate of 2nd Opinions, and I
push for it. There's nothing better than having some-
one higher up with more knowledge, an Epilepsy
Expert (a Level 4 Neurologist or Epileptologist) to
make such ruling and give the advisories. He/She
knows best for that is their expertise.

 

[borgolibero]

it is a known issue for individuals who have went on to try another medication and it failed and when attempts to return back to their old medication, it no longer worked!

Brain, excuse me, are you sure? I have had no evidence of this in past reading in italian forums and talking with other people with epilepsy. It is a very important thing, I think.

 

[steve]

Brain, excuse me, are you sure? I have had no evidence of this in past reading in italian forums and talking with other people with epilepsy. It is a very important thing, I think.

Yes, my mom is telling the truth. I can get her to post links on this issue.

 

[borgolibero]

Hi Steve, nice to meet you. Yes, it will be usefull if Sharon can do it

 

[Bernard]

Quick question: It wouldn't let me post just now because I was trying to post an "image". Is quoting considered an image?

The post you were trying to quote contained a link, which is also prohibited until you reach a certain threshold. See here for an explanation as to why.

 

[RobinN]

Hi Melanie - I wish you well in your decisions.
We had a terrible experience with the different meds that Rebecca tried, that she is not med free and much better controlled than she ever was on meds. We have the benefit of no side effects either.

 

[stilldancing_98]

You know I will have to be on that soon. N.F.B. When I was in the h. I was having so many simple partials.and absense seizures they had to change my meds.The Docs said I had been on everything.For now it works great. I have my head back. My thoughts back.Emergency monotoring.Methsuximide I think that is the name of it.Talk to ya later.