my neuro- why the sudden change in info? - Epilepsy Message Board

SentenceDoing · 12-10-2007, 09:00 PM

For years, my Neurologist has been reminding me not to get pregnant while on Tegrtetol because it's not safe for an unborn baby. So, anyway, recently, I've been getting fed up with the fact that I'm on the max dosage of Tegretol, and a high dosage of Keppra, and I still get a lot of breakthrough seizures. So I figured since I also want to have kids someday, I might as well get my meds changed now to something that would be safer for a baby, and will hopefully work better for me.
So today I had my 6-month check-up, and I brought this up to him, and when I mentioned the thing with getting pregnant while on Tegretol, he said, "Tegretol isn't that bad." ..WHAT? He's been adamant for four or five years that I shouldn't get pregnant while on Tegretol, and then today, all of a sudden, he's saying Tegretol isn't "that bad"??? He said they all have some risk, but Tegretol isn't one of the worst. And Keppra (the other med I'm on) should be fine.
So he still talked about switching me to Lamictal while keeping me on Keppra because of the amount of breakthrough seizures I have. I told him how sometimes its not too bad, and I just have a couple around "that time of month", but then it seems like every four months or so, I have a really bad week where I'm having simple partial seizures back to back for a few days, up to a week. But he wanted to get a second opinion about it from the Epilepsy clinic at Yale New Haven Hospital. So he was goingto have me go there again (I'd already been there once for testing a few years ago) to see what they think about putting me on Lamictal.
But then he changed his mind again and says my Keppra dosage still could be increased to 1500 in the morning and 1500 at night. So he wants me to try that first. On one hand, I'm relieved to not be changing meds just yet, just because it's such a hassle to not be able to drive, and to probably be feeling bad for a while during the transition. But at the same time, it makes me wonder why he suddenly gave me completely different answers about the Tegretol and pregnancy thing.

Travis from MN · 12-11-2007, 12:33 AM

From a male perspective thats been through the medications (and avoided a Dr for the reason of a med)...

There are meds with worse effects out there first of all. That **MAY** have been the Dr's viewpoint, about general side effects of Teg (compared to others), not pertaining to procreating and the safety of the fetus with the meds in the system.

After an initial visit with a Dr that was highly recommended to me, he wanted to change meds almost right away to one that had a high risk warning on it. After I pulled the FDA printout about this and called my old doc back, he agreed with me that medication was NOT suitable for my case and was baffled his recommendation did that to me.

I'd ask more of a basic question away from your Neuro/GP. Is there a OB specialist that may be able to consult with expertise for medications and the safety of the child? They may have training that could be helpful in that area. They might be able to provide you with potential medications you could/couldn't be on and the risks with what medication.

--Travis

030free · 12-11-2007, 01:11 PM

Hi sentencedoing, As you might know Im the women who underwent surgery this year and like you Im on Keppra 3000mg/day, plus Im also trying to get pregnant or atleast researching first my options. My neuro told my it was ok to become pregnant whileon the Keppra, but come to find out, my OB pecialist told me not to cause it can still cause child defects. tegretol was onther med I was on years ago, but three diffent Neuros told me specifically not to become preganat on this med cause it could cause a miscarriage and other effects on the mother. Trut me I was so affraid I didnt have relations for a while with my husband. These meds are not that safe, and even switching them for other will take time to adjust in your system. I decided to wait to get off all my meds first in 5 months plus another 5 after before I get pregnant. I suggest you see an OB specialist, and explain your situation. Mine had more knowledge on the effects then my neuro. Good luck

SentenceDoing · 12-11-2007, 02:34 PM

Thanks for the replies.
In actuality, I'm not even close to being married or in a relationship, so I was just thinking ahead with the pregnancy thing. So it might be a little premature for me to check with an OB specialist now. Though, I know my Gyn is also an OB, and he was the one who actually told me why Birth Control isn't as effective when you are on Tegretol (they both fight for the same protein, I believe he said). So he might know something about that also. so maybe I'll bring it up to him at my next appointment. But I think for now, I will see how the Keppra increase goes, and then in the future whenever I get married, I'll start to see an OB specialist about the meds.

neurowreck · 12-12-2007, 12:57 PM

There's always the risk-benefit decision- is it safer to be on the meds, or be off of Teg and risk all of the seizures, which put the oxygenation of the baby at risk.....? Also, there might be new studies out that haven't made it to the general public yet. Docs get new info all the time. That may be part of the reason for his change in views, along with the fact that you have a lot of seizures, and the meds might be safer for the baby than the seizures.