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Diagnosed at 32 years old
Thu, 05/23/2019 - 11:53Topic: New to Epilepsy.com
I am 32 year old female, just had my first child 4 months ago. After a night out at a bach party lots of throwing up and having to pump breast milk (first night out post baby) I had my first grand mal about an hour after waking up. ER and PA at Neuro both said "IT IS NOT EPILEPSY." I had a sleep deprived eeg that came back abnormal. I started lamicatal. Yesterday I went to the Neuro and she said flat out "You have epilepsy, there is no other way around it." Said my seizures were absence and that I most likely had them most of my life. While I don't deny her diagnosis, I am not agreeing with the disorder for many years. I only get "starting spells" when I am super hungover AND honestly I have never noticed until the last 6 years. I plan to get a second opinion as I have heard from everyone that you should do that. Any advice? I have obviously lived with this for many many years. How did this not become noticeable when I hadn't slept a month before having the baby and during child birth? She seemed to only be concerned with the absence and not grand mal activity. I want to get pregnant again next year, but this has been a huge bombshell. Any advice or similar stories? How long have people been seizure free on meds?
Comments
Hey TPOIT i'm 37 and newly
Submitted by Randoo254 on Thu, 2019-05-23 - 15:14
Hey TPOIT i'm 37 and newly diagnosed as well.. seems like most of my issues started after a night of partying as well drinking and some cocaine use (I don't use often). After that everything went downhill for me as far as symptoms and insomnia. Finally had an EEG and came back abnormal as well and was diagnosed today with TLE. Still trying to wrap my head around it all honestly sounds like we're in similar situations...
Hi there, sounds like your
Submitted by Believer_59cd4d81a99cf on Mon, 2019-06-03 - 16:56
Hi there, sounds like your brain usually has *some* unusual stuff going on, which is what they saw on the EEG presumably, but alcohol might be what triggers the actual or big seizures. A low med dose and avoiding too much alcohol might be all it takes to keep the szs under control and live a full, healthy life. These seizures don't mean you can't get pregnant again, just check with your doctor that whatever meds you take at the time when you want to become pregnant are healthiest for the baby. Best of luck with everything, it might be a lot to wrap your head around right now, but aside from the alcohol (as others in the comments noted), most of your life can be the same as it was.
Hi TPOIT, Thanks so much for
Submitted by Anonymous on Thu, 2019-05-23 - 13:26
Hi TPOIT, Thanks so much for sharing your story. It’s important that you continue to follow up with your healthcare team and express your concerns. For additional information about seizures, diagnosing epilepsy & triggers, please visit, https://www.epilepsy.com/living-epilepsy/toolbox/new-seizures-and-epilepsy To learn more about women and epilepsy please visit, https://www.epilepsy.com/living-epilepsy/women & https://www.epilepsy.com/living-epilepsy/women/epilepsy-and-pregnancyIf you need help finding a specialist please go to, https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist , https://www.epilepsy.com/affiliates & and a second opinion https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinions You may want to consider with your doctor having a device that can help track seizures, by visiting https://www.dannydid.org/ , and by keeping a seizure diary https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary as another self-management tool. These tools may be helpful in identifying & tracking seizures, other symptoms, managing medication & other therapies, recognizing triggers and health events that may affect seizures and wellness, which you can share with your providers. https://www.epilepsy.com/learn/managing-your-epilepsyFor additional questions, or help navigating local, or national resources please contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000, contactus@efa.org , epilepsy.com/helpline , where a trained information specialist can assist in connecting you to resources, provide referrals and additional support.