Living with epilepsy - Introduce yourself & meet others

I am a 24yr old female.
I am looking for some help.. i feel no doctor understand what is wrong with me
I have had epilepsy since around puberty.. around age of 12 when i got my period... i had alot of seizures until i was finally controlled on tegratol 200mg

Throughout my teenage years they decreased
When i married and fell pregnant i was a doctor lowered my dose to one pill 200mg only at night. This was because i had no seizures for atleast 6monthes.
Then i had no seizures for 5 years.
Now i am 24 suddenly i had 3 seizures in one day. I was taken to hospital and given a magnesium injection
This was 2 monthes after giving birth and not getting periods back due to breastfeeding..

I made myself sick fearing to eat anything or stress myself as i never knew what triggered it.

I visited a neurologist,he said my dose is too low. He said take 200mg at night and 300mg at night because i mainly get seizures when i wake..

Anyways through all of this i get symptoms of seizures throughout the afternoon and night and when i wake... so i get alot of auras but no seizures.(the feeling before i get the seizure) Ive had this problem since ive had epilepsy
How would i get rid of these auras??

My doctor seems to be confused and says its just anxiety but i know what im feeling. And it is the same feeling before my seizures (electric shock feeling in my right thumb)
He wanted to put me on xanax..

Do i need this much medication?? When i used to have seizures i would have only one in a day but after having 3 in one day i got worried

I have had multiple eeg and mri and they never find anything..

Please if you can help me.. i am sick of living life in fear

What would you advise me to do..

Hi, @nadinen, and welcome to Mayo Clinic Connect. I can imagine that would be quite a change from having no seizures in 5 years to now having them three times in one day.

You'll notice I have moved your message to this existing discussion, "Living with epilepsy - Introduce yourself & meet others" in the Epilepsy & Seizures group. I did this so that you could talk with the members in this conversation who've had experience with epilepsy. If you click VIEW & REPLY in the email notification, you can scroll back through the past and recent posts.

Members like @dawn_giacabazi @jakedduck1 @isalenamom@debvat @aroman @techi and others may have some thoughts on experiencing the auras you mentioned. They also might have input on your sense that the feeling you've described before having a seizure might be interpreted by your doctor as anxiety.

You mentioned being sick of living life in fear. What would you say is making you most fearful at present?

@nadinen I had a seizure when I was 21. No more after this. I was having auras thereafter, although for many years doctors always told me this sounds just like anxiety and I wasn’t aware I was actually experiencing auras. Finally I discovered Mayo in Rochester MN. They were able to capture these experiences with an eeg and told me they were auras. After about a year of trial and error with meds and tons of frustration on my part, and them as well, I was put on Keppra, right after it first came out, and haven’t ever had an aura since. Sometimes it just takes time.

Well yes it was an outburst of 3 in one day then it never happened again but had so much auras since.. its frustrating because u take extra precaution of having a seizure for no reason so you feel fear and worry all the time

Ive googled a million things and became too obsessed with trying new diets or cutting things out so i can see if it makes any difference but it all just comes back every few days anyways... i kept a diary of everything and i see no pattern. Its hard not knowing what causes these shocks ...mainly when i first wake or in the afternoon..

Im trying to stay positive now because i dont want epilepsy to take over my life anymore. I worry more than having the actual seizure which shows its become too much..

@nadinen
I was working on a reply to you but wanted to say a little something regarding your fear.
But first I have had over 13,300 seizures in my life. You absolutely cannot live your life in fear of the next one. YOU CAN’T! Fear can be very destructive, don’t allow it to be. It’s a total waste of time and effort to worry about things you have NO control over. Besides, what good does it do? Let me answer that for you, IT DOES NO GOOD. Did you ever think of the harm your worrying may do? It’s even possible your may be causing some of your own seizures. That theory isn’t as far fetched as you May be thinking right now. Fear, worry, stress, anxiety have been proven to be major seizure triggers. You need to enjoy your life. Live your life with gusto.
Sure you need to be cautious of certain things. If you have Tonic clonic Seizures you shouldn’t take a bath without someone with you. In the shower you should have a thermostat installed so you don’t accidentally scald yourself. Always have someone with you when swimming. Using elevators instead of stairs. Just go out there and live your life like every day is the first day of the rest of you life and if you have a seizure so be it. Shake it off and move on.

The problem is i have had mri and eeg and no results..ever.. nothing ever shows..

I even did a sleep deprived eeg.

I am worried to do these again and be told i am just hallucinating or have anxiety..

I am tegratol i think it is controlling the seizures very well but the auras.. maybe i should change my drug? However i am too scared to try this

Did they tell u a aura is a seizure... or could these be side affects from medications.. i am very lost, i just want answers 🙁

Me too. I had years of these same tests with no results, I understand how you are feeling. I was so angry with the medical world.
Is there something that you know will cause these auras?
When I was at Mayo, they listened to everything I was saying, hooked me up to an eeg 24/7 and recreated situations best they could to bring on an aura or seizure. Took a couple of days. That’s how they were able to capture it.
They said an aura is essentially a warning that a seizure might occur. It is not a seizure in itself.
Have you gone elsewhere to get another opinion? I actually went to Mayo for a long time without ever discovering anything and being told I had anxiety. I kept pushing them and they finally set up appointments with neurologists that found out what was happening. You have to be your own advocate, be strong and positive. They aren’t experiencing what you are and rely on tests to disprove you. I actually broke down crying in the doctors office one time with both the doctor and nurse in there. I told them I felt this would never be solved; the nurse told me they wouldn’t stop until it was solved. That was the turning point for me.
I also have heart problems, a very fast heart rate. Just a couple years ago I was in a cardiologists office with him telling me that it was anxiety. The next day I went back and told him I wanted another opinion. He relented and sent me to a doctor specializing in fast heart rates. That doctor confirmed what I was telling him, treated me for a fast heart rate which is still under control today.
Sorry for the long response. Just sayin that being your own advocate helps.

Most people with Epilepsy who have an EEG many don’t have activity during their test so it comes out normal. Mine are always abnormal. I haven’t had a lot of Focal Aware Seizures and the ones I had were never a precursor to a Tonic Clonic. I never knew of any triggers. Had seizures in in every conceivable place and every imaginable situation.
Congratulations on your positive attitude, a definite plus. Overcoming fear can be a difficult challenge but as you found out its possible to conquer.
You may ask your Neuro if Depakote is a viable option to control the Focal Aware Seizures.
Best of luck to you,
Jake