Epilepsy, do you have it?

["Got Disney"]

Just wondering who else on the DIS may have Epilepsy

I have had Epilepsy since I was 13...I am 51 now. I take Tegretol for my seizures and until I hit menopause (well almost there) I was seizure free for 15 years and prior to that 12 years. But before all that I would have Tonic-clonic seizures AKA Gran Mal seizures at least one or more every month. Once they put me on Tegretol they became controlled.

I suddenly had 2 seizures about 2 months ago. My neurologist was not much help in telling me whether I had them due to being sick from something I picked up in Mexico or menopause. After research I have come to the conclusion it was menopause.

So what is your story?

 

[coles1mom]

As time goes on, you'll have what they call break through seizures. Don't get to worried about it, cause the stress can cause a seizure also.

If they get worse your neuro might change your dose, try a different med, or put you on more than one kind of medication.

I'm also 51 and sometimes flop like a fish.

 

[monkey68]

I don't have epilepsy, but one of my friends used to get seizures after he had some brain damage after a brick fell on his head. About 2 summers ago, he had surgery and they removed a portion of his brain. Looking at him now, you would never know he had brain surgery and would never know he ever had seizures, he has no effects from the surgery, which is pretty amazing if you ask me.

 

["Got Disney"]

As time goes on, you'll have what they call break through seizures. Don't get to worried about it, cause the stress can cause a seizure also.

If they get worse your neuro might change your dose, try a different med, or put you on more than one kind of medication.

I'm also 51 and sometimes flop like a fish.

so are you menopausal yet ? I found after searching the web that progesterone cream helps with the problem of menopausal seizure. I am not sure that they were just break through seizures because it had been so long since having one. Mostly since they changed my meds to Tegretol. I use to have so many till than.

when I asked my Nero is my going into menopause caused this due to the drops in my hormones and making them unbalanced he said....I dont know lets google it

I was like gee I can do that without you....it was like he had no insight.... That was the first time I had seen a Neuro in like 15 years. No use ...there was nothing going on with me and I was well versed in the matter. Until menopause

 

["Got Disney"]

I don't have epilepsy, but one of my friends used to get seizures after he had some brain damage after a brick fell on his head. About 2 summers ago, he had surgery and they removed a portion of his brain. Looking at him now, you would never know he had brain surgery and would never know he ever had seizures, he has no effects from the surgery, which is pretty amazing if you ask me.

Yes it is....Brain surgery still amazes me in any form....glad to here he is fine

 

[december]

No epilepsy, but I had 3 seizures in my 20s. I'm 36 now, and haven't had one in 8 yrs. The 2nd was a doozy-gran mal when my dd9 was 4 days old (and ds11 was 2). I went to sleep in the same hospital I gave birth in, and woke up 2 days later in the neighboring hospital's ICU. They are watching me closely with this pregnancy. I was told that every seizure I had lowered the threshold for future seizures. I was on tegretol for awhile, and Depakote, and one other I can't remember.

I had a hard time sitting through church Sunday. The preacher decided to preach on Epilepsy really being demon possession. He's usually really good, but he went on and on about how we couldn't cure it because we didn't fast and pray enough. It was just me and ds11 (dh and dd9 were home sick). We had a long talk in the car about how that wasn't my belief.

 

[QueenMomof2]

My daughter has intractable Epilepsy.

She was diagnosed at 8 months old. She had her first Tonic Clonic at 6 months, her first partials that we noticed were around 3 months old but we didn't know what they were, we described them to our Dr. as "It's like she's sleeping with her eyes open" he didn't think much of it at the time.

Her Neuro now thinks she was having seizures probably from birth and we just didn't realize it.

 

[perdidobay]

No epilepsy, but I had 3 seizures in my 20s. I'm 36 now, and haven't had one in 8 yrs. The 2nd was a doozy-gran mal when my dd9 was 4 days old (and ds11 was 2). I went to sleep in the same hospital I gave birth in, and woke up 2 days later in the neighboring hospital's ICU. They are watching me closely with this pregnancy. I was told that every seizure I had lowered the threshold for future seizures. I was on tegretol for awhile, and Depakote, and one other I can't remember.

I had a hard time sitting through church Sunday. The preacher decided to preach on Epilepsy really being demon possession. He's usually really good, but he went on and on about how we couldn't cure it because we didn't fast and pray enough. It was just me and ds11 (dh and dd9 were home sick). We had a long talk in the car about how that wasn't my belief.

I have the words but I'd better not say them.......

 

[december]

Yeah, I know.

 

["Got Disney"]

No epilepsy, but I had 3 seizures in my 20s. I'm 36 now, and haven't had one in 8 yrs. The 2nd was a doozy-gran mal when my dd9 was 4 days old (and ds11 was 2). I went to sleep in the same hospital I gave birth in, and woke up 2 days later in the neighboring hospital's ICU. They are watching me closely with this pregnancy. I was told that every seizure I had lowered the threshold for future seizures. I was on tegretol for awhile, and Depakote, and one other I can't remember.

I had a hard time sitting through church Sunday. The preacher decided to preach on Epilepsy really being demon possession. He's usually really good, but he went on and on about how we couldn't cure it because we didn't fast and pray enough. It was just me and ds11 (dh and dd9 were home sick). We had a long talk in the car about how that wasn't my belief.

\

Good grief....that is what they believed centuries ago...they use to burn them at the stake.....scared that if they didn't the demons would also posses them... how crazy....yet this guy still preaches this in his church
Are you still on any meds?

My daughter has intractable Epilepsy.

She was diagnosed at 8 months old. She had her first Tonic Clonic at 6 months, her first partials that we noticed were around 3 months old but we didn't know what they were, we described them to our Dr. as "It's like she's sleeping with her eyes open" he didn't think much of it at the time.

Her Neuro now thinks she was having seizures probably from birth and we just didn't realize it.

How old is she now and how is she doing...that must be awful scarry for you!

 

[perdidobay]

Yeah, I know.

The reason I'm reading this thread is my DD had absence seizures when she was 3. She was on Tegretol for a year, and then was slowly weaned off it but has had no more seizures since. She's 25 now.

Best wishes to all you with these health issues.

 

[december]

I'm not on anything now-haven't been in about 6 years. I hope it stays that way. Dh always wanted another baby, but I was so scared after what happened with dd9 (the drs said it was life threatening at the time-I was shipped to another hospital because they couldn't stop the seizures). It took me 9 yrs to work up the nerve to try it again!

 

[QueenMomof2]

[QUOTE="Got Disney";30161966]\

How old is she now and how is she doing...that must be awful scarry for you![/QUOTE]

She's a 3.5yr old Princess.

It's still scary at times but mostly we are just kind of "used to it" for the most part. She has Tonic Clonic, Atonic, Simple Partial, Complex Partial, and Status seizures. Really the Status ones are the scariest when she stops breathing I just panic.

I still have hope that someday we will know more about the why's of her seizures and that we will find the right drug. However naive it may be.

 

[imabrat]

I don't have epilepsy, but certain medications I take cause epileptic reactions.

For instance, last year I was on Compazine to combat the nausea from chemo. That night, I had at least 5 petit mal seizures. I know this is nothing compared to a grand mal seizure, but I was scared out of my mind.

to anyone who has epilepsy.

 

[hjssk8]

I am 35 years old. I was diagnosed with epilepsy when I was fifteen years old. The form I have is juvenile myoclonic and it just affects my arms. I have noticed that it really acts up when I am extremely stressed or extremely tired. I take Depakote.

 

[coles1mom]

I had a hard time sitting through church Sunday. The preacher decided to preach on Epilepsy really being demon possession. He's usually really good, but he went on and on about how we couldn't cure it because we didn't fast and pray enough. It was just me and ds11 (dh and dd9 were home sick). We had a long talk in the car about how that wasn't my belief.

Oh My, I've been packin' a demon all these years. Now I have an excuse for my actions.

I too thought that stuff went out with the burning of witches.

She's a 3.5yr old Princess.

It's still scary at times but mostly we are just kind of "used to it" for the most part. She has Tonic Clonic, Atonic, Simple Partial, Complex Partial, and Status seizures. Really the Status ones are the scariest when she stops breathing I just panic.

I still have hope that someday we will know more about the why's of her seizures and that we will find the right drug. However naive it may be.

The medication is a tricky issue. I take two meds now. You'll find what works.

 

["Got Disney"]

I'm not on anything now-haven't been in about 6 years. I hope it stays that way. Dh always wanted another baby, but I was so scared after what happened with dd9 (the drs said it was life threatening at the time-I was shipped to another hospital because they couldn't stop the seizures). It took me 9 yrs to work up the nerve to try it again!

People dont realize how scarry seizures are to us. Its not so much for me the seizure it self but the feeling of being so our of control of the situation. Knowing that it could happen any time anywhere....

Than when you wake up not knowing who you are for awhile.

I think it is great that you are having another baby. You are older and things could very well be different. I do understand your fear. I was stuck on bedrest at 28 weeks from preterm labor with my second and all the meds i was on I was not sure how things would go but things went just great!

So how far along are you now and do you know what you are having?

She's a 3.5yr old Princess.

It's still scary at times but mostly we are just kind of "used to it" for the most part. She has Tonic Clonic, Atonic, Simple Partial, Complex Partial, and Status seizures. Really the Status ones are the scariest when she stops breathing I just panic.

I still have hope that someday we will know more about the why's of her seizures and that we will find the right drug. However naive it may be.

The senses is when you start Epilepsy before age 12 the chances that you will out grow it is very high! If you start after age 13 the chances are you will have it for the rest of your life. So that is good news for your daughter

I don't have epilepsy, but certain medications I take cause epileptic reactions.

For instance, last year I was on Compazine to combat the nausea from chemo. That night, I had at least 5 petit mal seizures. I know this is nothing compared to a grand mal seizure, but I was scared out of my mind.

to anyone who has epilepsy.

Your right it's nothing compared to epilepcy...you had Cancer

I am 35 years old. I was diagnosed with epilepsy when I was fifteen years old. The form I have is juvenile myoclonic and it just affects my arms. I have noticed that it really acts up when I am extremely stressed or extremely tired. I take Depakote.

Have you always been on Depakote?

 

[december]

[QUOTE="Got Disney";30162390]People dont realize how scarry seizures are to us. Its not so much for me the seizure it self but the feeling of being so our of control of the situation. Knowing that it could happen any time anywhere....

Than when you wake up not knowing who you are for awhile.

I think it is great that you are having another baby. You are older and things could very well be different. I do understand your fear. I was stuck on bedrest at 28 weeks from preterm labor with my second and all the meds i was on I was not sure how things would go but things went just great!

So how far along are you now and do you know what you are having?





[/QUOTE]

I'm almost 26 wks with a little girl

With my 1st seizure I was 21. I had been hit on the head at work a few weeks before, and started having "auras." I didn't know what in the world was going on, and people would laugh when I tried to describe it. I was at work (a summer job) and surrounded by other kids my age when I fell over and started kicking. I woke up in the emergency room. I don't remember anything but little flashes about most of that day.

With the 2nd, after dd9 was born, there are days missing from my memory.

With the 3rd, our house had burned in February and we lost everything (it will be 8 yrs next week). The stress I guess brought it on. It was early April, and my students went to an assembly. I didn't feel well, so I stayed in the room. My 8th grade class found me at my desk, with a huge knot on my head. I woke up in the basketball coach's lap in the backseat of a car with the principal speeding to the hospital . Since I was alone, I'll never know what really happened.

I always worry about what would happen if I'm driving my kids and I have another one. But you have to go on with your life, right?

 

[coles1mom]

Got Disney, I forgot to answer your question. No, menopause has not caused any seizures, in my case. I have not gone the full year, but I'm working on it.

As for Mom's to be out there, there is no know proof that the anti-seizure medication you are on will affect your baby. I know that was a major concern of mine. My 13 year old daugher is normal.

december, one day at a time. You and that baby will be fine. 3 siezures could have been caused by any illness and may never happen again.

Deb at AllEars has a great article on epilepsy, you can find it under planning. It's well worth taking the time to read.

 

[Kennywife]

I have had Epilepsy since 19. I have been on various meds including Tegretol, Depakote, Carbatrol, and Zarontin. My meds I'm on now are Lamictal and Topamax. Thank goodness I have prescription insurance!

People told me I couldn't do this, couldn't do that, but I proved everyone wrong. I graduated from my dream college three points shy of a cum laude, got married to a great guy, and work full-time at home as a travel writer.

Anna