new here

[heatherj]

hi guys and gals,
I've been struggling to find an online support group.
my epilepsy takes a break then rears it's extremely ugly head.
just want to chat with folks who truly do get it.

 

[Bernard]

Hi Heather, welcome to CWE. You've definitely found a community here that gets it.

 

[heatherj]

thanks.
this has been a lot harder than I expected (to find an online group) I found a handful but they only had meetings at x time or date. and I was just looking for whenever. if that makes sense.
I've had epilepsy for some time. but it's goes in and out. We've even discussed surgery then all of a sudden meds worked. I was good for almost a year.

then again. and again. absent seizures. I guess that's one reason to be grateful. it could be worse.

so hi everyone. thats my brief story

 

[Porkette]

Hi Heatherj,

Welcome to the forum! Take my word this is the best epilepsy forum I've ever been on and
I've had epilepsy for 52 yrs. Everyone here has been a great help to me.
I have a pattern in my seizures where I will have more in the fall and winter compared to the
spring and summer. My Epileptologist calls them "seasonal seizures" and the reason why I have
fewer seizures in the spring and summer is because there is more serotonin this time of yr. compared.
to the fall and winter.
Keep track of your seizures if you aren't yet. Get a calendar and write down what time the seizure happened
and the type of seizure it was by doing this your Dr. will be able to see a pattern in your seizures and this will
help figure out if you should be taking more seizure med at a certain time of the month. Also write down when
you start and stop your monthly cycle.
Here's wishing you the best of luck and May God Bless You,

Sue

 

[heatherj]

Hi Heatherj,

Welcome to the forum! Take my word this is the best epilepsy forum I've ever been on and
I've had epilepsy for 52 yrs. Everyone here has been a great help to me.
I have a pattern in my seizures where I will have more in the fall and winter compared to the
spring and summer. My Epileptologist calls them "seasonal seizures" and the reason why I have
fewer seizures in the spring and summer is because there is more serotonin this time of yr. compared.
to the fall and winter.
Keep track of your seizures if you aren't yet. Get a calendar and write down what time the seizure happened
and the type of seizure it was by doing this your Dr. will be able to see a pattern in your seizures and this will
help figure out if you should be taking more seizure med at a certain time of the month. Also write down when
you start and stop your monthly cycle.
Here's wishing you the best of luck and May God Bless You,

Sue

hi Sue,
thanks for the reply.

I do track my episodes. more linked to hormones for me. my doc has it worked out with gyn to get my birth control shot every 2 months instead of 3 to try to help avoid that issue.

other than that it is like now rhyme or reason. I think stress plays a factor. and like I said hormones for sure but my brain is just a little wild one

 

[Sabbo]

Hello. This is the best forum around. I've had epilepsy since childhood. My simple partials weren't diagnosed as seizures until after I suddenly had 3 or 4 tonic-clonic seizures (I haven't had any more since then). About 25 years ago, I began having complex partial seizures, too. Those have been a pain. They'll occur w/o any aura, & unless there's a witness or I do something to myself/my surroundings, I won't even know I've had one. One time, I changed into my PJs just after I had gotten ready to go out with my mom. Another time, zi nearly fell onto the train tracks at the commuter train tracks.

 

[heatherj]

Hello. This is the best forum around. I've had epilepsy since childhood. My simple partials weren't diagnosed as seizures until after I suddenly had 3 or 4 tonic-clonic seizures (I haven't had any more since then). About 25 years ago, I began having complex partial seizures, too. Those have been a pain. They'll occur w/o any aura, & unless there's a witness or I do something to myself/my surroundings, I won't even know I've had one. One time, I changed into my PJs just after I had gotten ready to go out with my mom. Another time, zi nearly fell onto the train tracks at the commuter train tracks.

omg. yeah. I often wonder if I have more than I even realize. I live alone.

 

[cadsgj]

Greetings. So sorry that you have epilepsy in your life. Curious. Do you take medication? If you do, has your dr tried many versions of meds? I am lucky in that I have gotten my seizures down to 2-4 each month; rarely grand mal, usually what my old neurologist called, simple complex or complex. I like to make a joke and call those my good day, where the grand mals are certainly the bad. For you, I really hope you get the good days.

 

[heatherj]

Greetings. So sorry that you have epilepsy in your life. Curious. Do you take medication? If you do, has your dr tried many versions of meds? I am lucky in that I have gotten my seizures down to 2-4 each month; rarely grand mal, usually what my old neurologist called, simple complex or complex. I like to make a joke and call those my good day, where the grand mals are certainly the bad. For you, I really hope you get the good days.

I take tegretol, zonegren and ativan.
I have good day seizures. the blank stare into never never land and snap back soon after.

 

[Sabbo]

I'm on Zonisamide (500mg) & Xcopri (250 mg). My neurologist recently raised the Xcopri to 250 from 200 because I continue to have breakthrough complex partial seizures--averaging 1-3 per month. I've taken EVERYTHING out there for my types of seizures. Those which I wasn't allergic to would work for a short time, then the breakthroughs would start again. I began Topamax, for example, when it was a brand-new AED. I took it for a long time. Some others didn't work when I was only having simple partials, so I said "What good would adding them do to stop complex partials?" when my doctor asked about those.

 

[Porkette]

Hi heatherj,

I have both absence (petit mal) and complex partial seizures. Just like you my seizures are connected with my hormones.
I was taking Diamox, mysoline, and tegretol but then after being on tegretol for so many yrs. I became allergic to it and
then I went on vimpat. My Epileptologist did a DNA test on me to find out I'm drug resistant to all seizure meds out there
now and and so he told me to start using the medical marijuana and that has decreased my seizures to the lowest in my life.
Another thing I do is take 2 Tablespoons of apple cider vinegar with mother in it. The mother is a good protein and a good
bacteria which helps control hormones and that has dropped my seizures even more. I know it sounds crazy but if you want
to give it a try. Also try eating nuts because the peanut oil has progesterone in it. I did that for awhile also.
Wishing you the best of luck and May God bless You.

Sue

 

[CathyAnn31]

Welcome Heather, you've landed at a great place.

 

[Dani1960]

hi Sue,
thanks for the reply.

I do track my episodes. more linked to hormones for me. my doc has it worked out with gyn to get my birth control shot every 2 months instead of 3 to try to help avoid that issue.

other than that it is like now rhyme or reason. I think stress plays a factor. and like I said hormones for sure but my brain is just a little wild one

I use the seer app.