New here....and had my first seizure in 5 years yesterday.

[bre4thewin]

Hi! Im Bre. I was diagnosed with epilepsy when i was 5. Ive considered myself very lucky because i dont have seizure frequently. I had 2 yesterday, but before that it had been 5 years, before that 5 years. After my seizure 5 years ago i stopped eating gluten. I year after i stopped eating it i tested negative for seizure activity on an EEG...which i never have. I had my first child 6 months ago and havent been sticking with my gluten free diet. Yesterday I was at dinner with my family, it was very hot outside and loud in the restaurant . I had a margarita. I started to feel it coming on, handed the baby to my husband and passed out. Came to and he was holding me up while holding our 6 month old. I passed out again and had another one...which has never happened before. I feel so sad. I dont want to go to the doctor just to have them take my license away and put me back on meds...which as you all know sucks. Looking for some support and understanding. Thanks in advanced!

[skillefer]

Hi bre! Know the feeling....honestly, you should go and see your doc. Depending on what state you live in, your doc may or may not tell you you can't drive. Also, your doc may or may not report it to the DMV based on what they think caused it, or the likelihood of it happening again. In the meantime, go back to the gluten free diet. also, be aware that the hormone shifts after birth can cause/trigger seizures too.

[bre4thewin]

Ugh. This sucks. Im in California, and last time they took my license away for a year. It would be one thing if i had them frequently, but 1 every 5 years? I dont want to go on meds for obvious reasons. i have taken in account the hormone change, and i do think that that has something to do with it. I hate this.

[skillefer]

Hmm...then could you go to your GP and ask them to run a hormone level test? Totally side step the neurologist...if your GP will run a hormone level test, and if they find the hormone levels are out of whack, then maybe they can prescribe you some bio-identical and that along with the going back to gluten free will help you.

[bre4thewin]

Thats a great idea. Im breastfeeding and it totally could be the hormones. I have a great Neurologist, the last meds i was on was Lamictal. It was by far the best seizure meds. No side effects. My poor husband is so worried about me. He has never seen me have a seizure before. I swear its way scarier for everyone watching then it is to actually have a seizure. I can always feel them coming and a lot of times i put my head between my legs and stop it. This time it just came on to fast. I dont know what to do.

[skillefer]

And before anyone scolds me for suggesting doing an end-run around the neurologist....at least by doing this, bre would be seeing a doc. ( I totally understand the not wanting to do the neurologist thing....California is a mandatory report state. )

[bre4thewin]

Thanks for understanding. Im the main bread winner and really need my license. I also would never forgive myself if something happened and my child was hurt while in my care so im torn. I know my body very well. I always know when im about to go down, but i keep going back to "what if something is wrong". I had seizure back to back which has never happened before. I think its because my husband was holding me up so blood wasnt able to get back to my head.

[skillefer]

I understand because I'm in the same predicament. Only, I'm preggers right now...so I get to deal with the lovely hormone shifts while prenatal...

[bre4thewin]

you know whats weird is i had no problems when i was pregnant. I was toatly expecting too, because ive always been sensitive to hormone shifts. I even labored 6 hours on pitocin with no pain meds no prob. I had gestational diabetes too, which was werid because im not nor never have been over weight or had diabetes.

[Meliss657]

Please go to your doc Bre. What happens if this happens again and ur driving with ur child? I know it sucks when ur license gets taken away, but I always looked at it like I was protecting myself. I had a seizure while driving one time and if my foot had been on the gas I would have driven into someones livingroom.

[bre4thewin]

Thanks Melissa. Its important that i hear stuff like this. because my seizures are so spread out, its easy to be in denial about it. I have been dealing with this my entire life, im depressed today for sure. I will talk more with my husband and mom when they come home.

[RobinN]

I had seizure back to back which has never happened before.

This is the problem... it is a disorder that is completely unpredictable.

My daughter is certainly not overweight, and she does not have diabetes. Yet we had her tested finally with a 3 hr. glucose tolerance test. He blood sugar was very low on the third hour. She did not exhibit any unusual signs and also did not feel odd.

[bre4thewin]

You know ive never taken my blood sugar in account for my seizures. It wasnt until i got diagnosed with gestational diabetes that i even thought about my blood sugar at all! Something i will look into for sure!

[RobinN]

I don't understand it yet, but there is a direct connection with excess insulin,the liver, and estrogen dominance.

[skillefer]

I have to agree with Robinn....the blood sugar levels are vitally important. For me, low blood sugar triggers seizures.

[bre4thewin]

if anything my blood sugar was too high...not low. i had just eatin and there is a ton of sugar in margaritas. this was also the first seizure ive had in the evening. in the past my seizures are in the morning.

[skillefer]

Hmm...sounds like blood sugar might be a contributor in your past seizures...after all, its several hours after eating, hence the term 'break-fast'. The one at night could have been triggered by consuming too much simple sugar at one sitting...when you consume large quantities of simple sugars and not enough protein, the body metabolizes the sugar quick causing a sugar spike which is followed by a sugar crash. so the night time one could have still been seiuzure triggered. Especially, if you hadn't had a chance to sit down and eat something with protein in it prior.

[RobinN]

You said you did well on the gluten free diet.
I don't see an immediate reaction to my daughters seizure pattern, but I do believe it is accumulative. Why not give it a month of really being careful with your nutritional choices. Most test appointments take that long anyways.

Be careful of the quick rise and CRASH of intant sugars, and carb loading. It is dangerous. In fact why not try for one month no sugars, and no refined carbs. Then if all goes well, do another month, and so on. No cheating and no exceptions.

That is what I would do.

[bre4thewin]

I still have my BS monitor from my pregnancy. I will start taking my BS again and see if my numbers are ok

[RobinN]

What I want to know is what is the BS immediately prior to a seizure. Of course that is hard to know for Rebecca, because she has no aura, or rarely does. Sometimes others mention that she was starting to show some signs prior. I would love it at that moment.

I am not sure I mentioned it, but there is something called reactive hypoglycemia. It is not related to insulin levels. One reacts to certain foods. So maybe keep a careful food journal. Dogtor J says you can be reative around four hours later. I have heard that sugars can stay in the system a lot longer. I believe that journaling is the only way to figure it out over time. Not a quick fix by any means.