Have Epilepsy Ttc Anyone Else In Same Boat

17 Replies
Reggie - November 11

Am on another thread nut thawt i would ask this as a seperate question. Am ttc and trying to make sure that i have enuf folate etc. My meds may cause spina bifida so have been checking to make sure i get enuf vitamins. Anyone else whos epileptic had a baby.Am a bit nervous that i might get seizure while preg. Can anyone whos ttc or had a baby let me know what they are going thru.

 

Lin - November 11

Exactly how epileptic are you? Have you had a large number of seizures? Are you absolutely positive you need to be on medication? I'm just asking, because I was on seizure medication for over 12 years after having two seizures as a teenager. I decided to go off the meds a couple years ago and haven't had a seizure. If that's a possibility for you, then you might be better off waiting and trying to go off the meds first. It would be better for the baby.

 

Reggie - November 11

thanx for replying so quick. I got diagnosed at the start of the year with temporal lobe generalized epilepsy. Ive had lots of the 'auras' over the last couple of years and only happened when i was stressed. Fortunately only one full b__wn seizure and at the time i was under a HUGE amount of stress. (quitting job, waiting to see if i got into uni, boyfriend working away...) my doc says that i have to be on tegretol because its what they put u on if u r trying for or are pregnant. the ways hes talking i will be on them for life. I would like to come off them especially as i have not had anything since i have bn on them. Dont wanna keep putting chemicals in my body if its not necessary! Especially would like to make sure i have a healthy baby. Have bn told that if u come off them because u r seizure free, sometimes pregnancy can cause seizures to happen again and usually worse. May go to another doc for second opinion. Wot u think? Do i make sense or am i rambling?

 

Lin - November 11

Hm, it's really hard to say, especially since it's relatively recently that you were diagnosed. I've got my own theories about epilepsy and the nervous system, but I'm not about to spout them out here as I'm not a medical professional and they have no firm scientific basis (and I am a scientist). I was also diagnosed with some kind of general temporal lobe epilepsy. I can't remember what they called it, since it was years ago. Nothing really major showed up in the MRI. At any rate, I'm not so sure I'd take the chance of going off the meds just yet, if I were you. At least, I certainly wouldn't do any ttc-ing until after a year or so seizure-free after stopping the medication. Perhaps it would be good to see another neurologist and get a second opinion on how to deal with epilepsy management while pregnant. In my experience, when it comes to neurological disorders that don't appear on an MRI, the cert_tude of medical advice gets a bit fuzzy. It might help to hear more than one professional opinion.

 

Lisa*9 - November 11

A friend of mine has three kids who were born with symptoms like fetal alcohal symdrom from seizures meds. Is called another name.

 

Reggie - November 11

Yeh nothing showed up on the MRI but when i had the EEG or ECG cant remember wot it was called, it was something to do with the brainwaves which was the reason that he said it was this specific type of epilepsy. How do u feel now that u have come off the meds? Have u had any auras? Do u feel worried that u may have another or do u feel pretty confident? May partner thinks i should be ok to come off just make sure i keep healthy and not stress. Thats easy to say! Did the doc wean u off the meds? For how long? What made u decide to come off of them? Is there a certain amount of time u should wait to see if its "gone away" if it can go away? Or would i have to have another MRI or EEG? Sorry am full of questions now. But am very grateful for anything u can tell me.

 

Lin - November 12

Ok, here's my story. I had a number of pet_t mal seizures for about a year after a head injury when I was 16. At the age of 17, I had two grand mal seizures. I didn't tell anyone about the first, because I had been away for the weekend and had lied to my parents about who I was with. The second one happened while I was working and landed me in the hospital, where they started me on meds and took away my drivers license. I took 90mg of phenobarbital (that's in the US, it's called phenobarbitone in Australia and luminaletten in Germany, not sure about elsewhere) for over 12 years, because I was allergic to both Tegretol and Dilantin. The former cut my white blood cell count in half, and the latter gave me hives. Anyway, I stopped the meds after I moved to Germany a few years ago, because it was a good opportunity since I didn't have a car and had previously depended on one. The doctor weaned me off over two months. First I dropped to 60mg for a month, then to 30mg for a month and then to nothing. I haven't had a single seizure, pet_t mal (what I a__sume is what you're referring to as an "aura") or otherwise since. However, about 10 months or so afterward, I started having migraines with very severe auras, and I'd never had them before in my life. These migraines may or may not be connected to the previous epilepsy. Very little is known about it, but there is a known connection between the two. Anyway, these auras are distinctly different from the pet_t mal seizures I had. The pet_t mal seizures were characterized by confusion, a metallic taste in my mouth, a bit of vergo and chlaustrophobia, and most distinctly an overwhelming and all-consuming feeling of deja vu. The migraine auras are very different and are characterized by temporary vision loss in the form of a big blank spot, the edge of which is framed by a colorful zig-zag pattern, numbness that starts in my hand and moves up my arm, extreme sensitivity to light, nausea, and then the inevitable migraine, which only goes away with medication or sleep. Anyway, that's my history. I don't think there's any specific time after stopping the meds when it's safe to say that the epilepsy is gone. I would wait at least a year, and of course the longer you go without a seizure, the more sure you can be that it's gone bye-bye. At any rate, if you decide to go off the meds, the doctor will surely do some testing, whether it's MRI, EEG, EKG or whatever. It's hard to say what, because I had it all done in Germany, where they're always willing to do every test under the sun, because health insurance has to cover it. It's not the same in the States, if that's where you are, because the health insurance companies have way too much power. Anyway, now I think I'm rambling on a bit, so I'll let you absorb all that babbling I just did. ;-)

 

Reggie - November 12

Am in Australia. All the way over here :) Those dejavu headaches were what that doc called auras. He said it was to do with the brainwave pathway thing pa__sing through the senses part of the brain (temporal lobe i think) and thats why we get that metallic taste/smell, dejavu (even though we may have never done something before) and headache because the wave is following the wrong pathway. Basically thats the way he explained it to me. Its a seizure but a mini one. To others we just look like our eyes are glazing over and were spaced out. Which is true coz my mate said that was how i looked when i had a mini one once. The full b__wn one i had was the.....grand mal i think thats what it was called. Ive not had any of those feelings but i do have an extremely sensitive sense of smell since being on these meds, it drives my partner nuts. Am taking the tegretol 200 controlled release twice a day atm and have been told they are the best...dunno never taken anything else. Have been having reg 'trough test' blood tests and everything seems fine atm. All levels good so maybe he will take me off them. Ive never had any probs with strobe lights either so i am wondering if its a very mild form of epilepsy (if u can get that) and just have to keep myself from building up stress like i used to. Used to get severe migranes with those migrane auras aswell so that i could only see parts of stuff coz of spots in front of my eyes. Havent had one since ive bn on this medication....wonder if the two connected?? Im starting to dribble again.....its nice having someone else i can talk to about epilepsy and what they are going through. The first time i had a dejavu aura i thought i was going mental or something and didnt want to tell anyone. Its THE most bizarre and upsetting feeling! I spoke to my partner and we are gonna go get another doc opinion. I will keep u up to date if anything happens. Are u ttc?

 

Christi - November 12

If it makes you feel any better, I had a friend who gave birth 6 months ago. She had pretty bad epilepsy... she had it since she was young and has been on medication most of her life. She did fine through her pregnancy... and her baby is doing great as well...

 

Hi - November 12

I am glad to hear from both of you Reggie and Lin. I'm 31 weeks pregnant and have not had a absence seizure or full b__wn seizure during my whole pregnancy.I have been off my meds for over a year. In the past I had both since around 10. At 9 I started having migraines. I had auras and gray spots. Especially during college, I would fall go out at stressful experiences. My doctors kept saying it was blood sugar till I lost consciousness while in bed and urinated on myself. At this point I was told not to be home alone or drive till I found the right med. One day I was home and got a call from my doctor (weird huh, a house call). At 14 I had been put on birth control to help regulate the migraines. Well, he had been to a conference (2004) and found that use of B.C. in people with migraine headaches w/aura can increase the risk of stroke to the point that he would no longer fill my B.C. He also said I was his first call and he was calling his wife right then to get her off also.At that point I was so p__sed I got off of everything (including my seizure/migraine meds). If I couldn't take B.C. Like millions of other women then I wasn't going to chance other drugs. I became pregnant a few months later later.Pregnancy has been stressful, yet I have not had a migraine or seizure the entire time. I think my body just wanted a break. Do I have a point? I think that our medical model community is very quick to pa__s out meds without thinking of the long term. A person's body can get on cycles with different meds and forget to regulate. I'm trying things without meds and I have been doing well.

 

to Reggie!! - November 12

Hi!! I know how you feel! I have had seizures quite some time now. You can e-mail me at [email protected] I have had 1 healthy little girl and am pregnant with our second child. Talk to your doc about the folic acid, he advised me to take 5mg a day because of the meds i am on! e-mail me and we can chat some more!

 

Lin to Reggie - November 12

Yes, we're ttc. I just went off the pill this month. Wish us luck! By the way, my hubby and I will be in Oz over the holidays, visiting his family in Melbourne. Any chance you're in Victoria? We'll probably also be heading out to Natimuk, near Horsham, to go climbing at Mt. Arapiles. Anyway, just thought I'd mention it in case you're in the area... I must say, I'm a bit surprised, though on the other hand at the same time not surprised, to hear that so many people have both epilepsy AND migraines.

 

Reggie - November 12

Goodluck ttc Lin its very exciting hey.....not to mention fun wink wink ;) Thanx for ur responses everyone so far its bn helpful. The only thing i was worrying about before was having seizures and losing the baby or something but then the doc told me that my meds can cause spina bifida holes in heart etc and i felt gutted! So when i got home i rushed to look on net at wot i can eat or what supplements are good so can give the best for my future baby (hoping). But when u look they say take folate and vitamin A but take too much and its toxic and causes cleft palates brain deformities etc. Ur d__ned if u do....Have been off the pill for few months cause of issues with pill but since then have been trying to take womens multivitamins and eat well and excercise. Its nice to know that there are people out there who have had no probs during and after pregnancy, like ur mate Christi. To 'Hi' and 'midnight' best wishes during ur pregnancies we could talk soon if ya want 'midnight'. Are u in Oz? Where abouts? Am in Perth. Sorry Lin but if ur ever this side of Oz send me an email [email protected] Ive never heard that about the pill and stroke that sounds awful.

 

Lin - November 12

Hey Reggie, don't let yourself get too worked up about the complications that could happen. Most are unlikely to be a huge problem, and even if they do end up being so, worrying excessively about it will do you no good. I just went to the local drugstore/chemist and got a bottle of prenatal vitamins. They should have what you want in the right quant_ties, and I'd guess that they're probably a better than just women's multivitamins. If I can ever get over to Perth, I'll definitely get in touch. I'd love to head over there and perhaps even one day wander on up to the Kimberlies.

 

Michelle - November 12

Reggie, I hope all the best to you! I am actually in Canada. My doc did tell me about spina bifida and cleft palate, the ultrasound I had showed that we were lucky to be clear from that. The only thing I am worried about now it the holes in the heart.... reason for that is that the doc wanted me to go for amother ultrasound becasue they thought they saw something.... the horrible part is that they noever told me what... or if it was me or the baby, but all I talk to say if it was that urgent they would have gotten me in for an ultrasound sooner. The only thing the doc said was that it was very very very rare... yeah, like that made me feel better.. I am still a little nervous though. I go for the next ultrasound on the 23rd, so I have a bit of a wait yet.

 

Michelle - November 12

oh and Reggie, if you want we can still chat, I am the one with the [email protected] addy!

 

Reggie - November 14

Oh no Michelle thats no good. Hope all is well. Im sure you will be ok coz if it was urgent they wouldve booked u in ASAP! But keep us informed. Can I ask what might be a stupid question? Ever since we have bn ttc, whenever my partner you knows inside me, I get extremely itchy after and i feel like....u know that spongey bit just inside...well it feels swollen and throbbing. Heres the dumb question...can u be allergic of sorts to sperm? I mean if u have always used condoms and never had it inside u can it take time for ur body to get used to it? I know i feel like ive asked a really stupid question but u guys are good at listening to my stupid questions and dribble. I dont know if its thrush which ive had before but i didnt feel swollen down there. Sorry if i have grossed anyone out. By the way Michelle wot is the time difference in Canada what time would be a good time to talk?

 

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