Update: NCEPR: Neurologist Thinks I Have Epilepsy

[decemberwedding07]

Update to my seizure on Saturday. I have always had sensitivity to flashing lights. They make me feel extremely nauseous. The second I mentioned that to the neurologist, he said he suspected I have epilepsy. He said having a first seizure at 33 would be unusual, but I'm still young enough that it's possible, though usually he would expect for me to have had my first seizure by 27. I will get an EEG and MRI done in the coming weeks, and he will know more then. For now, I can't drive for the next three months. This really sucks. And I have no idea what effect and epilepsy diagnosis will have on IVF. Efffffffffffffff. 

UPDATE: Yep. The EEG showed I have epilepsy! At this point I'm mostly just annoyed. I don't really know what to think. The doctor said seizures while you're pregnant are bad, so I should be on meds if I'm TTC, but he also said that the best options for seizure meds for pregnant women are Class C drugs. There's no better option. He's putting on Lamictal. If you want to freak yourself out, just read the potential side effects of a drug you're about to take.

I haven't gotten a chance to talk to my RE about how this will affect IVF. I really don't know what to do there. I've had three failed transfers (each with two healthy embryos that have undergone genetic testing), so part of me thinks that it's just not going to work for me, so maybe it's time to ask him about surrogacy. Now another part of me thinks that even if I do become pregnant, the drugs are going to increase the risks to my child(ren), so maybe that's another reason to consider surrogacy. Ugh. And the worst part is that alcohol is a risk factor for seizures in epileptics, so I can't even drink away my feelings beyond 1-2 lady glasses of win. 

[twotrue]

I'm sorry to hear this. I was really hoping it would be a one time thing for you.

[Elsa]

Oh man. I'm sorry I can't believe they've never suspected it before

ETA: I should clarify...that I can't believe that you haven't shown more symptoms and it hasn't been caught before.

[IIOY]

::hugs::

[sfy]

I'm so sorry. I hope the tests prove you are completely healthy, no epilepsy.

[redheadbaker]

I'm sorry. {{hugs}}

[saz]

I'm sorry you're dealing with this! This happened to a family member a few years ago although she's in her 40s. It was really hard on her to get the diagnosis but she is doing well now and it does not seem to have affected her quality of life.

[CallingAllAngels]

Ugh, I'm sorry. No driving for 3 months would be horrible for me. Do you at least live some place where you can get around without driving? I hope you get some positive answers soon -- regarding this episode and IVF. Hugs. (hug) (hug2)

[omgzombies]

Hugs! That sucks. Try and keep as calm as you can until you get a firm diagnosis.  

In the meantime milk it for all you've got... "Could you get me more wine? I would get up and get it myself... but I have... the epilepsy!!".  "I should probably get a back rub right now, the doctor wants me to be relaxed.  It's for my health after all, since I have... the epilepsy!!"

[laurenpetro]

i'm sorry!

[LadySusan]

Ugh. I'm sorry. The no driving thing sucks!

Did you tell your epilepsy doc that you were trying to get pregnant? I know that there are some medications that are better than others.

I'm talking out my ass here, but maybe the not noticing it until you are 33 thing means that you have a really, really mild or gradual form of the disease? Maybe you will only have seizures every thirty-some years?

[orangeblossom]

Oh man, I'm sorry. Wishing you the best as you do more testing.

[WOT?*]

I'm sorry about the possible diagnosis, but at least there's a possible one and it can be treated with care and medication. It's also possible that you've had seizures before but just not known because they weren't grand mal. XH had his first at 25. The seizure and diagnosis are the scary part right now. You learn to adapt.

Make sure your doctor knows about the IVF and fertility doc knows about the epilepsy. Certain medications will affect treatment differently and they can modify your course of treatment for both.

Epilepsy.com is a good website for support and information (National Epilepsy Foundation). National Seizure Disorder Foundation (.org) is a lot more cluttered but you can find good information there as well.

I am truly sorry you're dealing with this. But it can be dealt with. Good luck with your treatment plans and huge hugs from me.

[ttt]

I'm sorry I hope you get some good results from the MRI and EEG.

[penguingrrl]

I'm so sorry! That absolutely sucks!

[decemberwedding07]

Sept 1, 2015 15:44:57 GMT -5 LadySusan said:

Ugh. I'm sorry. The no driving thing sucks!

Did you tell your epilepsy doc that you were trying to get pregnant? I know that there are some medications that are better than others.

I'm talking out my ass here, but maybe the not noticing it until you are 33 thing means that you have a really, really mild or gradual form of the disease? Maybe you will only have seizures every thirty-some years?

I did. He said that there's one drug that's considered ok for pregnancy. Obviously, it still makes me nervous. A malfunctioning uterus is bad enough, but a malfunctioning brain is really, really annoying. It's rather inconvenient! I've never had a new car and we just bought one yesterday. And I can't drive it. Not a big deal in the long run, but it's just so typical! DH is going to be my driver for 3 months, poor guy. The other complication is that I tend to get motion sick when I'm the passenger. I hate not being the driver. 

[omgzombies]

Oh oh, and you have an excuse to get a fainting couch!

[LadySusan]

Sept 1, 2015 15:55:37 GMT -5 decemberwedding07 said:

Sept 1, 2015 15:44:57 GMT -5 LadySusan said:

Ugh. I'm sorry. The no driving thing sucks!

Did you tell your epilepsy doc that you were trying to get pregnant? I know that there are some medications that are better than others.

I'm talking out my ass here, but maybe the not noticing it until you are 33 thing means that you have a really, really mild or gradual form of the disease? Maybe you will only have seizures every thirty-some years?

I did. He said that there's one drug that's considered ok for pregnancy. Obviously, it still makes me nervous. A malfunctioning uterus is bad enough, but a malfunctioning brain is really, really annoying. It's rather inconvenient! I've never had a new car and we just bought one yesterday. And I can't drive it. Not a big deal in the long run, but it's just so typical! DH is going to be my driver for 3 months, poor guy. The other complication is that I tend to get motion sick when I'm the passenger. I hate not being the driver. 

OK, this would make me so crabby at the universe!

[tacosforlife]

I'm really sorry. I'll be thinking of you as you go forward with the testing.

[WOT?*]

I'm really sorry about the not driving part - for both you and DH. Believe me. Try to be gentle on him. lol.

[miniroller]

Oh my goodness- wow. Pretty big thing to find out about yourself, huh? Well, now you know (probably). So many hugs, dear girl. I hope you find some peace with this diagnosis.
*I haven't been able to drive for several months, & It's Tough. But you deal with it. Even though I wasn't a big favor-asker before, I rarely turn down an offer of an errand chauffeur these days. And you have to suck it up & ask the first couple times, because many times it doesn't occur to friends/ family that this is something you now need. I'm almost positive, they'll appreciate you asking. Feel free to pm!

[moreace01]

I'm sorry you are going through this. It can be really scary. I think I shared my own story earlier but just wanted to reiterate that for me at least, I went on meds and it didn't affect my quality of life at all. I didn't even notice. And eventually, after a number of years, my eegs turned normal. So this definitely doesn't have to be a life-long thing.

Anyway, hugs to you and I'm hoping for an easy process to get this under control.

[pierogigirl]

I'm sorry. I hope you get some good news after your next appointment.

[macmars45]

I'm sorry about your diagnoses.  I hope you get all the answers you need from the tests & your neuro. (hugs)

FWIW: I've had epilepsy and been on anti-seizure meds for 18 years. Since I'm 'of childbearing years' I've been on Tegretol with is an older well studied med (30+ years used). It's deemed to be one of the safest to be on while TTC/pregnant. I can't speak to how it plays into IF. Something to note though, IME its been impossible to find an obgyn that knows about epilepsy or a neuro that knows about pregnancy. It's kind of like flying blind. I do a lot of my own research and advocate so hard for myself.

If you want to talk feel free to PM me.

[skwcm80]

I'm so sorry. (((Hugs)))

[downtoearth]

Hugs. What a shocker I'm guessing!

A friend of mine has epilepsy - she also has three kiddos under 4 ( 2 are twins) and takes care of them full-time! I don't know about IVF but I do know she had pretty normal pregnancies.

[josieposy]

((hugs))

[msmerymac]

(hug) (hug2)

[FloFTW]

Oh man. I imagine this must be so shocking. I hope as you gain more information it becomes less and less scary and more manageable. Big hugs.

[Michelle]

OMG I hope they are wrong.

And even if they aren't, like others have given example, you can still be a mom and have children even if you epilepsy.

We'll be thinking about you!