Hello! I am glad I found this group…

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

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I have been really struggling lately with coping emotionally with having epilepsy. I have had other health problems but epilepsy has always been a constant in my life. An annoying roommate that just will not go away!! :)
I was diagnosed as having Epilepsy at 7, but the epitoligists believe its was really 3 or birth. So since the first diagnosis its only took 40 years to get the proper diagnosis. lol. A rare epilepsy Genetic generalized epilepsy with eyelid myoclonic (formerly Jeavons Syndrome). If anyone has this, i would love to chat! So this epilepsy has up to 4 seizures involved… well mine does.
After that i was eligible for th vagus nerve implant and just had the implant in December. I am still having seizure every week. They are better but it is so hard on me and my husband … wow this is long… its just been a lot.. i can cope with a lot but i am at a point where i need a hand. Thanks
Hi Jess, welcome to CWE. 👋

Most everyone here can relate to your frustration. Uncontrolled seizures wreak havoc on our lives.

Are you keeping a seizure journal to track your seizure activity over time?
Hi Jess,
Welcome to CWE!
Just like you I've had seizures since I was a kid I started having them at 10 yrs. old and I've had to live with the
seizures for 52 yrs. I had surgery done to reduce my seizures and that was a big help. Just like you I had myoclonic
seizures for awhile and then my Epileptologist did a sleep study on me and found out I had a sleep disorder that was
triggering these seizures so I was put on vimpat and this form of seizure stopped but I also have absence and complex
partial seizures. I found out I was drug resistant, so my Epileptologist told me to start using medical marijuana and
I am amazed at how that has really reduced my seizures. I get it in a mint flavored mouth spray and squirt it in my
mouth twice and day.
I wish you only the best of luck and May God Bless You,

Hello & welcome to CWE. I've had seizures since childhood. At the time, it was simple partials, which I'd describe as "weird feelings" in my head. After I had some tonic-clonic seizures, a "feeling" was caught on an EEG--that's how they recognized them as seizures. Slightly over 24 years ago, I began having complex partial seizures as well. I have tried every AED out there for these types of seizures. Those that I'm not allergic to will work for a short time then it's as if my brain becomes immune to them. I currently take 500mg Zonisamide & 250mg Xcopri every day.
Welcome to the Group. You're in the right place. There are plenty of people who are more than happy to listen, and even proffer advice should you ask. It's a great bunch of people; I've been here a little over a year and believe me when I tell you that they are good people here.
Welcome JessD!

This is an excellent site to hear others' stories and maybe even discover something that works for you. It helped me become more knowledgeable about epilepsy to where I didn't feel insane because I didn't have a clue how to describe an aura and if it was what I was having. How could I describe "weird feelings" and hope to find if anyone knew what I was talking about?

As for your VNS, I've had one for about 8 years now so I might be able to relate to some things or answer some questions if you have any. The two main things for me was it gave me a dry throat/mouth, but between getting used to it and using a dry-mouth mouthwash, I don't have those problems. Still might wakeup with a slight dry mouth, but not bad. Second was that it kind of gagged me when they turned it up. I gave myself a "workout" and swiped my magnet a few times a day and that helped me get used to it. Now the only thing is it interrupts me when I’m talking in mid-sentence. However, it has help me come out of the seizures sooner and I don't feel exhausted after one.

Feel free to ask me any questions. Again, welcome!
Hi Jess,

Welcome to the group!

A little bit about me, began seizures at age of 1 due to a vaccination. Have gone through 3 surgeries (brain, Vagus Nerve Stim, Deep Brain Stim) At any rate, I'm very happy to speak more should you have any questions. My seizure activity went from having four or five seizures a day to next to nothing because I now have the Deep Brain Stimulator that was done in 2011 before FDA approval. Feel free to ask any questions that you would like to ask, happy to help any way that I can. You're in a great group by the way. The group is like a huge family with tons of information so you've come to a great forum in my opinion. Welcome to the group once again! :)
JessD, so sorry to hear what your life problem is at; we understand and welcome you. I personally do not follow the situations which you do, but my hope for you is that each day things get better. Welcome.
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