TTC with Seizures

[Navy2mom]

I have had Grand mal and Petit mal seizures since i was 2yrs old,then just before my 11th bitrhday my seizures just disappeared and i was taken off Tegertol,now 18-19 yrs later i am having seizures again and have been put on Keppra ....i take 500mg twice a day. DH has been scared out of is mind cuz he has never had to deal with anything like this in his life. I ordered my medic alert bracelet today and DH and I have been talking about getting me a seizure dog cuz DH is in the military and has to leave here and there at times. We have 3 kids and are TTC baby #4. So now i am looking for a support group to talk to and to be a friend to those who need someone who knows what they are going though. I will check back to see if anyone has posted in a bit.

 

[mummy3]

:wave:
I have epilepsy, complex partial seizures and take lamotrigine.

I'm newly pregnant with no 4 and also in San Diego

 

[Navy2mom]

:wave:
I have epilepsy, complex partial seizures and take lamotrigine.

I'm newly pregnant with no 4 and also in San Diego

It's nice to meet you Congrats on your new BFP That is very exciting news Question for you: when pregnant is there a seizure medication that is safe?

 

[mummy3]

None are 100% safe.
From my experience I go with lamotrigine Carbemezipine (tegratol) works great for me normally but it doesn't work as effectively for me while pregnant, my first dd also got a mild birth defect from it ( flattened bridge of nose) but its not noticeable.

Thankyou, about the bfp, its early days but very excited!!

How old are your other kids, we have a 5, nearly 6 year old girl, a 2 year old boy and a 1 year old girl!

Also depending where you are in san diego, there is a great neurologist for when pregnant, Dr de la vega

 

[Navy2mom]

We live up by Qualcomm Stadium off the 15,we live in Murphy Canyon (Military Housing)......Where is Dr De La Vega located at?
I was on Tegertol for a while and it worked great with me it was actually the only seizure medication that i was able to function on. I was just put on Keppra on Saturday and started it Sunday Morning and it is messing with me ...i am having trouble functioning on it to care for my kids during the day and i can't get house work done with out losing my balance or coordination....Dr say is takes 4 weeks to adjust too,but i don't have 4 weeks ...i have kids and a house to take care of and school starts next Tuesday for my kids!!

 

[mummy3]

Yeah 4 weeks is not very realistic when you have 3 kids Why did you swap over?

Dr de la vega is in La Jolla, I live in Clairemont which is west of you right?

I totally forgot about school again My eldest is due to go to either 1st or 2nd grade( she went to school in england first) and I have completely forgotton to take the paperwork back!

It must be pretty scary for you when your dh goes away with the military My hubby works 8-5, home for lunch, and thats bad enough! Also I'm assuming you don't drive either? I don't and sometimes it can get frustrating, in the UK everything was pretty walkable, here not so much!

 

[Navy2mom]

Yeah 4 weeks is not very realistic when you have 3 kids Why did you swap over?

Dr de la vega is in La Jolla, I live in Clairemont which is west of you right?

I totally forgot about school again My eldest is due to go to either 1st or 2nd grade( she went to school in england first) and I have completely forgotton to take the paperwork back!

It must be pretty scary for you when your dh goes away with the military My hubby works 8-5, home for lunch, and thats bad enough! Also I'm assuming you don't drive either? I don't and sometimes it can get frustrating, in the UK everything was pretty walkable, here not so much!

I live of Aero Drive ...lol Clairemont is just two exits up from me I use to drive....not sure if i will be able to drive again since my seizures have made a grand appearance again. I was taken off Seizure med 18 yrs ago cuz my seizures just disappeared for no reason. Dr thinks once i started to hit puberty that hormones had a part at making my seizures stay away for a while. I turned 30 yrs old in April and my seizures came back in May of this year.....My first one this yr was in church,it was a complex partial and then this last one i had on Friday Night, i'm not sure ....i started to a eat a piece of candy and then started to feel fuzzy and got a very strong aura and bam hit the floor!! DH took me to the ER and ER neuo. Dr is the one who put me back on seizure medication cuz i am still waiting to see my Neuro DR...which finally i will see on Sept 3rd and hopefully she will have some insight after looking at all my test and blood work....I have had a CT,MRI,bloodwork....only thing i haven't had is an EEG yet!!
I am thankful that my kids school is right across the street.
SO you are from England, that is really cool....my Brother-in law is from England,an place called Stoke-on-trant.....not sure if i spelled it right ,sorry

My Son,Andrew will be going to the 2nd grade ,my first DD,Liliana will be a first grader and my youngest,Sarah will be starting her last year of preschool

 

[mummy3]

I have no sense of direction I didn't realise you were quite so close!

I know stoke-on -trent! I have relatives there

That seems strange your seizures have just come back. My type of epilepsy is temporal lobe, it usually goes at puberty too but I was unlucky. Did you know what type you had before?

Hopefully you will get some answers on friday ecg is usefull, only really if you are in the middle of a seizure, I have had several normal ones and a couple abnormal, usually they were 24 hr ones that showed the problem. Don't know how practical that would be though

 

[Navy2mom]

I have no sense of direction I didn't realise you were quite so close!

I know stoke-on -trent! I have relatives there

That seems strange your seizures have just come back. My type of epilepsy is temporal lobe, it usually goes at puberty too but I was unlucky. Did you know what type you had before?

Hopefully you will get some answers on friday ecg is usefull, only really if you are in the middle of a seizure, I have had several normal ones and a couple abnormal, usually they were 24 hr ones that showed the problem. Don't know how practical that would be though

Morning Sorry I have been out the last couple of days ,but I am back So my Neuro. Appt didn't give me the news i was hopping for....i walked out in tears and feeling so angry. So Dr says NO DRIVING for at least 6 months(and that's if the meds control my seizures and DMV clears me after the Dr's do!!!),and the normal no swimming by your self,no climbing ladders or high places,if you take a bath don put too much water in the tub so you don't drown if having a seizure... I am such you have heard all this before Dr says my first Seizure in May sounds like a partial seizure but the one i had a week ago sounds like a generalized seizure. I am having some horrible moodiness on Kappra so DR.T is easing me on to another medication in 25mg increments and i will work my way up to 150 mg twice a day.
I was also put on Folic Acid 1 mg cuz DH and i are TTC baby #4 .... Now we are just trying to figure out the cause of what brought the seizures back...I need to call to get an appt for an EEG. Only part of the EEG that i hate is the strobe light testing....it always makes me feel weird and i start sweating with a feeling of panic or fear. Dr said there are three causes they are going to look at for me.....one they have been seeing alot of patients that have started having seizures after getting gastric bypass(I will be 3 yrs post op in Feb 2011), second is a hormonal cause(cause both times i have sized has been either just before or just after my period) and the third is there could be something going on with my heart(I have never had anything wrong with my heart) All very scarey... so hopefully we will figure out a cause but it is likely that this is a simple return of my seizure disorder from when I was a child cuz it's gentic in my family.
I was DX at age 2 yrs old with Petit Mal seizures and then started having Grand-Mal seizures. And i am being seen at UCSD in La Jolla

How are you feeling?? Has morning sickness kicked in yet??

 

[mummy3]

HI! :wave:

I'm sorry it didn't go as you hoped I do know first hand the "rules" we have to follow. It sucks about your driving but there are some things you can do, we are eligible for a disabled bus pass for instance, I know its not the same as driving, but its a start

The strobe lighting is familiar to me, my epilepsy is photosensitive, so I have to avoid flashing lights also.

The gastric bypass angle is interesting, I know mine is hormone sensitive

Yeah the sickness is nasty As this is #4 too I'm pretty big already When are you due to test?

 

[prettymachine]

sorry to stalk you lol, but i came across this and had to read it because my sister has been having seizures for 16 years... and she is now somewhere between4-7 months pregnant. she hasnt seen a dr yet (hopefully today!) and she said she stopped her meds when she realized she was pregnant because they are bad for the baby... but it worries me the stress of pregnancy could give her a seizure... she typically has grand mal...wouldnt this threaten the babies life?

ps i am off the 15 too...miramar! lol.

 

[mummy3]

:wave:

Hi! Yep she really needs to be on meds if she hasn't been seizure free for at least 2-5 years. The risk to the baby esp after first tri in taking meds is so much smaller than the risk of starving her baby of oxygen, of thrashing her stomach if she has a full grand mal seizure. Im not sure of a nice way of putting that sorry

The types of medication availible is more advanced now, there are much more choices for pregnant women. Also has she been taking a higher dose of folic acid? This is very important for pregnant women with epilepsy as we are at higher risk of neural tube defects.

My LO did get a birth defect from the lamotrigine, the extend of it is that it literally makes her eyes look bigger, most definately not noticeable to anyone but an expert and I would absolutely take the meds again (and do). My type of epilepsy doesn't give grand mal seizures but the risk to develop one is there and that was enough to go with meds. Its imortant to naote though that woman with epilepsy do have a higher chance of these type of defects even without meds, as I only started at 20 weeks with that pregnancy ( due to seizures worsening after years free) there is a fair cance she would have had that defect meds or no meds.

I don't know how useful this is, but I really hope it helps. Good luck to your sister

 

[pinkflamingo]

Hi,
I hope you don't mind me dropping in but I just want to wish you well. My husband has epilepsy, and has only had it for 3 years when it was brought on by a brain tumour. He has recently changed from epilim to a combination of epilim and Keppra. So far so good. The epilim seemed to have become stagnant and he was having fits more often, and since he has changed his meds, many people we know who have epilepsy say that they have to change meds every few years as its not uncommon for an 'immunity' to the meds to occur.
I have worried about whether his epilepsy will cause issues for us and a baby - both when ttc and also when we have a baby and he is caring for it. I guess its all about managing the condition and knowing your triggars.
I can understand that the concerns are greater for you as you will be carrying the baby etc, and just wanted to wish you luck and a happy and healthy 9 months to you all. xx

 

[prettymachine]

She is supposed to see a specialist this week for the seizures, so as long as the dr is smarter to put her back on them, she will hopefully be taking them soon! She got prescription prenatals today... they are aware of her seizures so hopefully they gave her one with a higher folic acid. she will find out monday how far along she is, and the gender. (that is the same day i am due to test...what a day that should be! lol) i would guess she is at least 6 months along by the look of her belly.

 

[mummy3]

She is supposed to see a specialist this week for the seizures, so as long as the dr is smarter to put her back on them, she will hopefully be taking them soon! She got prescription prenatals today... they are aware of her seizures so hopefully they gave her one with a higher folic acid. she will find out monday how far along she is, and the gender. (that is the same day i am due to test...what a day that should be! lol) i would guess she is at least 6 months along by the look of her belly.

Aww just seen this again, good luck to you both, I really hope you get your bfp! If either of you need someone to talk to, please pm me. It's lovely to speak to people who live here