epilepsy and ivf

[Babytwinkle]

hi

Just looking to see if anyone has some experience

Epilepsy since 3 been seizure free for 3 and a half years. Had a seizure today.

Icsi cycle May 2021- freeze all

FET July 2021- unsuccessful thaw

ICSI jan 2022- resulted in baby girl

FET- July 2023 resulted in MC

so I had my review after the miscarriage at fertility clinic and dr went through everything for moving forward for next cycle. then at the end of the appointment just said and your epilepsy is controlled and you’re seizure free so I had to tell them. She then informed me I had to to be seizure free for a year which I never heard before. I’m 41 next week so I really don’t want to wait the year. Has anyone experienced similar or any advice.

TIA

[Missionofendo]

Morning,

I’m so sorry for your loss and totally understand I had my previous pregnancy TFMR and it’s such a hard thing to go thru.

I’m so sorry did you have a seizure today? That’s awful do you know why?

I’m epileptic also Peti mal just the absences I’ve never heard of being seizure free at all.

Is there anyway you can call your fertility and epileptic doc up to clarify this?

It’s never even been discussed at any of my meetings I’ve had 2 UK clinics and about to start with a Greek one.

Look after yourself you need pampering after all you been thru ✨🪽🙏

Best wishes and lots of good luck

Claire x

[Babytwinkle in reply to Missionofendo]

Thank you for taking the time to reply. I’m sorry for your loss I’m sure it was an awful experience.

Yes it was. Yesterday afternoon I think it was because I was getting bloods taken which isn’t an unusual occurrence. I’m grand mal so went rigid and unconscious but didn’t convulse. I had a neurologist who was unfit to practice and diagnosed peti and grand mal . He over medicated me for years without me realising when I changed dr and medications I was informed I didn’t have peti mal it was side effects of medication though I still had grand mal. With new dr I came off the meds he had me on as they also aren’t safe during pregnancy, this took 11 months and finally got the right dose and medication and epilepsy stabilised. It speaks volumes when I hadn’t had a seizure even with. Covid, several ivf cycles, natural birth and miscarriage!

I had review appointment with fertility dr and it was her that informed about the year which wasn’t mentioned before and I’m almost sure I started process after a bad period of seizures. She said she would contact neurologist but I’m going to ring the epileptic nurses today and send message in portal. I wasn’t happy with the portocal she would suggesting she wanted me to do freeze all and I want to question it.

Good luck with your next cycle, I’ve heard great things about the Greek clinics.

[Missionofendo in reply to Babytwinkle]

Aghh that’s awful can it still be grand mal if you didn’t convulse?

How do you feel today ?

I was on Epilim with my first pregnancy 20 years ago and sadly had to end that due to being on that now banned medication. The medication was too harmful for the baby.

Broke me having to go thru that and then again both different medical reasons but both were too poorly to make it.

Yes that’s quiet something not to have a fit with everything you write gosh what’s a shame it’s happened I’m so sorry x

When I was pregnant last time I had terrible insomnia as I was so sick as baby was sick and I was awake loads in the night I didn’t have one absence at all.

I can’t believe you been on wrong medication all this time that’s so annoying it’s crazy how something so so incredibly important can be wrong to the patient!

Anyway - Here’s to happy news for us both soon.

I’m rooting for you get the answers and question it all.

Take care today xx

[DianeArnold Partner Nurse Fertility Network UK]

Hi Babytwinkle. Well you’re doing very well keeping the seizures under control. I wish you well with this transfer and hope little one decides to stay. Diane

[herewego89]

Hey Babytwinkle! I’ve had epilepsy for about 13yrs now (result of a car accident). I have seizures between 1 & 4 a month (grand mal) and despite trying multiple variations of anti epileptic meds my seizures remain… My clinic at first were cautious, however as I still have annual checks with my neurologist around medications etc they were happy that my medication had been reviewed to be “safe” if I were to fall pregnant (I’m on Lacosimide and Levetiracetam) due to increased risk of Spina Bifida.

My clinic is an NHS clinic, but I know they all handle their protocols differently area to area, which is so annoying.

I wish you all the best and hope your clinic can support you, make them aware you have support from your neurologist x

[Babytwinkle in reply to herewego89]

Thank you for your reply. I’ve with a private clinic and have had all treatments with them. I think I was just taken back by it as it had never been mentioned. I’m on the extra dosage of folic acid and take lamotrigine which is same in pregnancy. I’ve not had an appointment in almost a year though should have had one 6 months ago. Just have to wait and see now.

[herewego89 in reply to Babytwinkle]

Bloody epilepsy! I have only recently got a new neurologist (thank god) my last one I always found judgmental, I’m sure he was lovely but was just very snooty and I felt uncomfortable asking questions. After dozens of med changes he mentioned brain surgery and I told him to bugger off 😅

💜

[Babytwinkle in reply to herewego89]

That sounds awful. Hope you’re ok now and your doc has got a positive forward plan for it