want to switch meds - Epilepsy Message Board

SentenceDoing · 11-09-2007, 12:45 PM

Hi all, I've been on Tegretol (and keppra) for over six years, but my doctor had mentioned a couple years ago about putting me something else (I don't remember which one), because Tegretol is one of the older drugs, and there are newer ones that are better for you long-term, and also better for a fetus when/if I get pregnant.
The thing is that I definitely want kids someday. I'm not in a relationship right now, but I'm almost 26, and I do plan on having a family someday. So I am seriously thinking of changing my meds now to one of the ones that's safer and won't have as high a risk for an unborn baby as Tegretol will.
Plus, the Tegretol has caused me to gain 15 lbs over the past few years, I heard it could have long term effects on the liver, and I also suspect it may have caused the issues I'm currently having with my Thyroid (I'm in the middle of being tested, but I think I may have Hashimoto's Thyroiditis)... but I don't know how true that last one is because I've read websites that mentioned Tegretol as a possile cause and then others that said it's definitely not.
And probably the biggest thing is that I still have a lot of breakthrough seizures (simple partial), which only occur around my period, so my doctors and I are trying to control them birth control, but I can't be taking that while I'm pregnant, whenever that happens!
But anyway, I kind of just want to be on a better medication.
What do the rest of you recommend? Ladies, those of you who've had children while on Anti-epileptics, what meds were you taking?
I have an appointment with my neuro in a month, so I'd like to be able to be informed when I ask him again about changing meds.
Thanks!

Dutchepi · 11-10-2007, 07:56 AM

Your story could be mine! Partially that is, my internist politely ordered my neuro to switch meds because the tegretol messed up my thyroïd!

It caused me to become hypothyroïd, it made me hyponatremic, hypocalciaemic and it interfered with my adrenals. And that is only part of the sidefx I suffered from it!
Indeed........I also gained a lot of weight over the years!

You are right that the info about tegretol (or other AED's) causing hypothyreoïdie is contradictive! But still.......where there is smoke there's fire!

My neuro wants to start me on Keppra now. For you that is not a good option, since it is only quite recently marketed and therefore insufficient data is available as to teratogenic effects. But I did came across info that there are neurologists who give women on Keppra the green light to conceive........

Women in their childbearing ages are often started on lamictal. Also one of the newer drugs, but already slightly older than Keppra and: it has prooven to be save for the unborn child!

By the way if you are hypothyroïd and it is caused by teg, there is a slight chance it will reverse itself by quiting the teg; although data is also contadictive on this item.

But.........I haven't come across any data about Hashimoto, where there are antibodies involved (it's an auto-immune illness). All the data I came across simply stated: hypothyreoïd due to.........., never did it say: Hashimoto thyroïditis!
Therefor my question would be: can teg make the body turn on itself and causing auto-immune ilnesses?
I do know it can cause a Lupus like syndrome..........but hashi?

hope my posting was helpful to you!
Lot's of luck!

SentenceDoing · 11-10-2007, 11:43 AM

Thank you very much for your reply!

It's good to know that there is proof that Tegretol has caused thyroid issues in someone else. I'm not quite sure yet if I have Hashimoto's though. I've had a few tests, and the blood tests came back "normal", but the ultrasound on my thyroid came back abnormal. I don't know exactly what that means yet, but I have an appointment with a specialist next week. So I'm only assuming Hashimoto's since they must have found a goiter or a growth on my thyroid with the ultrasound, and I have a lot of the symptoms. I did read that Hashi's can sometimes be caused my medications, so I just had the thought that if Tegretol can cause hypothyroidism, then maybe it can be the cause of your immune system to want to attack the thyroid, too. But like I said, I don't even know if it is Hashi's yet. Could just be hyothyroidism that caused my thyroid to swell.

And thanks for the info about Lamictal. I think that was the one my neuro mentioned a couple years ago. At the time, I was still in school, so I couldn't really be worrying about changing my meds and trying to find someone to drive me 20 miles to school every day while I couldn't drive myself. But I finished school almost 2 years ago, so I'm going to bring it up to my neuro again when I see him next month.

Also, I'm already on Keppra. I take it in addition to the Tegretol, and I'm already on the max dose of them both, so I don't think mono treatment with Keppra would work for me.

Thanks again!

Dutchepi · 11-11-2007, 03:58 AM

You're welcome!

And keep me posted about your thyroïd findings, it's the first I came across someone that might be suffering from carbamazepine induced hypothyroïdie as well! Not that that's festive..........

But you know what I mean!

Good luck switching meds! I have to do it also, and honoustly......I'm dreading it!

SentenceDoing · 11-14-2007, 12:03 PM

I know- I'm not looking forward to the actual switching of meds. I'm kind of scared of it! I don't want to feel bad and have more seizures again! But it'll be worth it in the long run, I hope.