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Living with epilepsy - Introduce yourself & meet others
Epilepsy & Seizures | Last Active: Jun 29, 2023 | Replies (462)Comment receiving replies
Hello. I'm Chris. I'm 51 years old. When I was a Baby in a crib, my lungs filled up with fluid and my brain was deprived of oxygen. My mother came into the room to check on me in the crib and found me and rushed me to the ER. Today, the Drs. Think that may be why I have the scarring on my brain. I've had seizures since I was 10 years old. I have Partial Complex seizures. I had the VNS put in me and it didn't work. The Drs. Took it out of me. I've been on many different medications. At the present time, I'm taking Tegretol, Keppra, and Vimpat. It seems these 3 medicines have controlled my seizures better than any other medicine in the past. I still have approximately 8 to 10 seizures a month in comparison to 20 or more that I used to have. I get them in clusters around the hormone time of the month. At times when I'm working outside or exercising too much I get over exerted and I'll have a seizure or at times I've fallen down. My husband has come to my rescue me and caught me many times. I get triggers from cold, perfumes, strong, and, cleaning fluids. It seems the older I get the more sensitive I get to triggers. I'd like to get some information in reference to some food that may help.
Replies to "Hello. I'm Chris. I'm 51 years old. When I was a Baby in a crib, my..."
I've read a lot about the seizures that women receive with perimenopause & menopause. I'm in postmenopause now and would love to talk to some women who have gone through these stages and are still encountering the hormones that bring on the seizures monthly. I was reading about that on webmed. I will read this article from Epilepsy Foundation that you posted. I'll check into these 2 discussions. Thank You.
I was so glad to see your post. I am a 58 year old woman, I was diagnosed with epilepsy when I was 6 years old. I have been on quite a few medications in my lifetime sometimes 4 or 5 at a time. My journey with epilepsy has been a mixed basket of sorts. Although on medication, I had seizures on and off all throughout my childhood and teenage years. I suffered from both Tonic-Clonic (Grand Mal) seizures as well as Absence (Petit Mal) seizures. Although still on medication I made it twenty years seizure free. At the age of 48 and premenopausal I began having seizures similar to the Absence seizures I suffered 20 years ago. The seizures came every month and lasted for one week 7 or 8 days. I had so many all day and night long I could hardly function. I have been on many different medications since then. Fast forward 10 years - to now. I am still having them post menopause. Sometimes a month here or there is skipped and I am fortunate to have a seizure free month. The intensity of the seizures has lightened somewhat. I can have anywhere from 5 - 100 or more a day, they last 1-2 seconds and almost no one can detect that I am having one. I joined this group hoping to find someone that is in the same or similar situation as well. My doctor is at a loss as to what to do. I tried hormone therapy and it didn't work I am not sure if it has worked for others. Trying to schedule tests has been a failure, I have to be within the week of the seizures to have the tests and so far the clinic has not been able to schedule me during the time frame that all of this occurs. Any information, articles, etc. would be appreciated.
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Welcome to Connect, Chris.
You mention that your seizures cluster, generally around your menstrual cycle, and also that as you get older, you're more sensitive to triggers. Have you done any reading or talking to others about how perimenopause and menopause can affect seizure activity?
I found this article from the Epilepsy Foundation http://www.epilepsy.com/information/professionals/about-epilepsy-seizures/hormones-and-epilepsy/menopause-and-perimenopause
I wonder if anyone else here has any experience with changes in seizure activity and hormones, life changes, etc.
I digress. Chris you ask about food. You might be interested in taking part in these 2 discussions on Connect:
- Ketogenic diet for children https://connect.mayoclinic.org/discussion/ketogenic-diet-for-children/
- Connection between depression, epilepsy and nutrition https://connect.mayoclinic.org/discussion/connection-between-depression-epilepsy-and-nutrition/