I'm new here but not new to epilepsy/seizures. Hello!

[@Pez]

Me: I am almost in my mid-thirties. I have been married for 11 years. I have cats. I am a professional educator. My husband and I have been in the adoption process for two years now.

Epilepsy/Seizure history: I was diagnosed with Benign Rolandic Epilepsy at 13. When we tried to taper off my medication, I started having seizures again. Therefore, it was deemed that I did not grow out of it. I did a week long stay/study at a hospital to do tests and switch my medication from my Divalproex Sodium (since I am a woman). This was not a successful switch. I had the choice between delaying college for more trial medications that may not work or staying on the medication I was prescribed back when I was 13 (they began with Dilantin but my throat started closing up). I chose to live my life and keep the medication I was on since it was clearly working. The last EEG to show epileptic activity was during my initial diagnosis before any medication was in my system. Even with breaks in my medication my other EEG's have not shown epileptic activity. My MRI's show mesial temporal sclerosis, however. Before my medication and with the attempted switching of my medication I had generalized tonic-clonic seizures. With my medication I do not have them. Every now and then, during my menstrual cycle mostly, I have small, non-convulsive seizures even with medication. I have seen three neurologists. I am going to see a new neurologist since we moved states. She specializes in women with epilepsy. I am excited about this and hope she is a great fit.

Why am I here: I recently left the public school system after being a classroom teacher for nine years. My first job as a Kindergarten teacher was very difficult due to the neediness of the children in that area and the administrative climate, but I was younger and fresh out of college. My next teaching jobs were stressful in the sense that its public school teaching, but I could manage it because of good leadership. During these years, my small seizures starting getting more frequent. I did updated testing and scans. I also increased my dosage of AS medication. Upping my dosage made me even more fatigued and didn't seem to solve the small episodes. We moved states and I got a teaching job in the public school in my area. It was going well, until leadership went sour and let me just say I wasn't the only classroom teacher one who left that campus. I was ready to apply for another classroom teaching job in the area, but we were matched with a child for adoption so I started teaching at a private homeschool co-hort to have more time with our higher-needs child till they reached school age. That match fell through but I finished out the year at the co-hort. Since working at this small class size co-hort my small seizure episodes have decreased. I have had less small seizures episodes than when I was working in the public school system by far. That said, it hasn't been good for us financially. I am worried about our future monetarily. It's not a higher-end lifestyle we are trying to keep up with thing, my concern is in affording a homestead. I feel stuck in the in-between. I have a disability where I can still work, but it is a financially limiting one.

Keep in touch:
I would love to keep in touch and discuss life with others who may be on Divalproex Sodium. New neurologists seem to always wonder why I am still on it. They also wonder why I do not have a rescue nasal spray prescribed. I have been seeing a neuro since middle school and have never had one prescribed. Also, are there any other women out there who are triggered by their cycle?

Thank you for reading and for this space to support one another.

 

[Sabbo]

Hello & welcome to CWE! I've had epilepsy since childhood--it wasn't diagnosed until I was 14, after I had some generalized seizures. I can remember complaining of "weird feelings" in my head even when I was 5, but nobody could understand WHAT they were. One occurred during an EEG after those seizures, and that is when doctors FINALLY understood what I'd been complaining about. They were simple partial seizures. I feel them come on, & they usually last less than 5 minutes--I'm aware of what's going on around me.
Although I have an Associates degree in Accounting & a BS in Economics, I have never been able to work. About one year after I completed my Bachelors degree, I suddenly began having complex partial seizures. This resulted in 2 VERY scary occurrences, after which my family said DON'T DO IT. One time. I nearly fell onto the tracks at the commuter train station--in the other, I collapsed outside my office building when leaving for the day. As I have no aura, it's VERY troublesome. I have injured myself SEVERELY many times. I no longer cook unless there is someone else in the house--I've burned myself (2nd & 3rd degree) at least 8 times.

 

[Porkette]

Hi Pez,
Welcome to CWE! Take my word this is a great forum, and I have been here for yrs. and everyone is very helpful.
I've had epilepsy for 54 yrs. now and just like you I worked in public school for 35 yrs. as a teacher aide in Special
Education and mainstream classes. I have had both absence and complex partial seizures along with aura seizures
also called simple partial seizures. A few yrs. ago I had surgery done to reduce my seizures and just like you I would
always get them right before my monthly cycle and that was do to the hormones changing each month. Then I found
out from my Epileptologist that peanuts have natural progesterone in them and he told me to eat some a couple
of days before the month and that really helped me a lot. You can also buy natural progesterone cream which is made
of peanut oil and wild yams and put it on your skin and that helps also.

I know what you are talking about in public school and all the politics it's gotten to be more of a business at the
school I worked at but I didn't back down and I would stand up for staff who I felt did no wrong. Once the
cell phones came out that's when I started to have a problem. The students were allowed to use them before
school and during lunch and that's when I noticed I was having seizures. I told my Epileptologist about it and
he did a e.e.g. on me and he was purposely using his cell phone but I didn't know it and each time he used his
cell phone the spikes went sky high in my e.e.g. and that's when he found out I was sensitive to cell phones. It
was the frequency they use that was bothering me. My Dr. also did a DNA test on me to find the best seizure
med but he found out I was drug resistant to seizure meds so he started me on the medical marijuana for a short
time and that worked well except it made me really tired. As crazy as this may sound what stopped most of my
seizures was apple cider vinegar with mother in it. Mother is a good bacteria and a good protein. I was using it to
lose weight and that's when I noticed my seizures decreased to the lowest in my life. When I told my Epileptologist
and Neurosurgeon about it they did a study and found it was the mother in the vinegar that was stopping the seizures.
Be sure to keep track of all of your seizures. Get a calendar and write down what time you had the seizure and the type
of seizure you had. Also write down if there's a low pressure in the weather or if you are sick because that can trigger
seizures for some people. I wish you the very best and May God Bless You!