Hi all ! New here just looking for some support :)

[Samara]

Hi my names Samara im new here and well to cut a long story short ( i think it explains my background to epilepsy on my profile ) but the nuerologist is starting from scratch with me ..had my MRI scan yesterday and got my EEG on friday morning at Preston ,all i am aware of so far is some scar on the right temperal lobe of my brain that could have possibly been from medication my mother took during her pregnancy nobody seems to know what has caused this so far , so i am undergoing the tests to confirm wether or not it is epilepsy .

I just have a few concerns i was looking for abit of advice or support with and thats mainly with fertility and getting pregnant if the outcome is that i have epilepsy , Im only 21 and not planning a baby anytime soon but im a worrier
Ive read that in temperal lobe epilepsy it is more common for women to have PCOS ( im not sure if this is right im going for the poly-something ovaries thing ) and it can be more difficult for a woman to get pregnant so i was hoping for a bit of advice in that department as i do REALLY want a family one day and would be quite gutted if i could not get pregnant .

Also contraception ..i currently have " Nexplanon " the rod in my arm is there any medication that stops this from working or is it just contraception such as the pill that it can effect? Ive a lot more questions now im older and as of yet my nuerologist wasnt prepared to talk to me about pregnancy related issues as i am not currently planning a baby. My decision would be to stop medication throughout a pregnancy as i only seem to be having mild absences and have not brought myself to any harm as of yet by being in this " daydream "

Im hoping to meet some new people here to chat to , get to know and also learn more and hear about other peoples experiences . I was singled out as a child by other children got bullied for being " different " so i was never very open about anything that was going on but having to under go all those tests again and be told after so many years nobody really has a clue what went on in my brain is a slight kick in the teeth , any support , advice or just a friend would be very much appreciated X

 

[Kaitybugsmom]

Hi Samara, welcome to CWE!

You will find support, advice and friends here thats for sure. I know there are several women on the forum that have E. and they should be able to share their experiences with you as far as what meds they were or were not taking during pregnancy and how things have turned out.

Our daughter is only 15 and it is something we have already discussed. At some point she does want to get married and have a family. Shes concerned that 1.) she will pass E on to her children and 2.) that any medications she takes will hinder her ability to have children when she is ready. All things that will be discussed with her neurologist. I dont think its a conversation that should wait until you are 'ready'. What if the medication they want to put you on can cause damage to those vital organs that make getting pregnant possible?

 

[Samara]

Hey thankyou for your reply , that was exactly my argument .. I wanted to know everything so if there was any chance it lowered the effectiveness of my contraception what i can do to stop my baby being at risk from any harm and family planning ..my options for when the time comes and all he said was he will have my doc put me on folic acid so if i fell pregnant by accident it lowered chances of defects in the fetus . It was something that was really bothering me as im in a long term settled relationship ..of course its what most women think about so i felt it was a discussion i should have just to put my mind at ease

Hopefully when the results of my MRI and EEG are back its a discussion he will be prepared to have with me i think its quite important as a woman to make sure nothing compromises any working parts !

 

[Cint]

Hi Samara and welcome to CWE,

When I started having CP and TC seizures I was in my early 20's and engaged to be married. I had no idea where they came from or why. I was put on folic acid along with Dilantin and was told at the time I couldn't take birth control pills because it would lower my seizure threshold (that was 30+ years ago). So I had an IUD. But I couldn't tolerate that, either. Anyway, I ended up having two healthy, happy children. Both are now college educated, one is going to law school and the other is married. I stayed on the Dilantin during the pregnancy. Throughout their childhood, I was on different medications, had surgery, VNS, and they still succeeded, despite it all.

 

[Nakamova]

Hi Samara, welcome!

Some anti-seizure meds (particularly Lamictal) can interact with hormone-based birth control the pill. Since your implant is progesterone-based, that may not be the case, but you should discuss any medication side effects with your neurologist just to be on the safe side.

Regarding PCOS: It's not clear whether epilepsy has a causal or a correlative relation with it, and what role anti-seizure meds play. Some meds, like Valproate, seem to have a causal role, but other AEDs seem to play a beneficial role. In women with temporal lobe epilepsy, those treated with an AED other than Valproate had lower rates of PCOS than untreated women. The best thing is to be aware of the symptoms and discuss the situation with your OB-GYN.

One other thing to consider is trying an alternative (non-medication approach to controlling your seizures. The Modified Atkins Diet (MAD) has shown success in reducing seizures, particularly absence seizures. More info here: http://www.atkinsforseizures.com/

Best,
Nakamova

 

[MadNerves]

Hi Samara and welcome to CWE,

As a man, I can't really help you on any advice due to pregnancy or anything like that, but I can say that if you are looking for friends and support, you came to the right place. I have been overlooking these forums for some time and just recently posted myself and became a new member. I hope you find the support you need and the inspiration in the words of these fine people at this forum--as I have.

Once again welcome and take care.

 

[Samara]

Hey thanks for all your responses havent been on in a while been so busy with everything .. so ive had my EEG and my MRI and nuerology have said i have an " enlarged blood vessel " in my temporal lobe and something to do with some vein ..it was very brief letter i have another app on 26th April . he simply wrote i need a more powerful head scan ..so being a worrier im now totally freaking out regarding this little blood vessel as it is something ive never heard of! ...on another note after all the stress from the past few weeks im jetting off to Orlando florida end of june for a lovely stress free holiday so ..that slightly lifted my spirits

 

[Krista2882]

Hi Samara,
Welcome!
About pregnancy while on meds, there are some that they say are unsafe to be on while pregnant. I know Tegretol is one of them.
I've heard of successful pregnancies on Keppra, and like Cint said, she had two healthy kids while on Dilantin.
I think it is a good thing to talk about with your neurologist early on, so he can start you off on a med that will be safe(r) for an unborn baby. It's not so easy, once you're on one med that was working well, to switch to another. So you might as well start off on one you'll most likely be able to take through a pregnancy down the road.