Epilepsy, do you have it?

[coles1mom]

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

Most excellent

 

[Keira1387]

I had Petty Mal seizures as a kid. I took Depakote and the doctor believes that I grew out of them. I have been seizure free for several years now, and hope to keep it that way!

 

[Sinderelli]

I had to reply when I saw this thread...my sweet, lovable DS9 has epilepsy. He had febrile seizures as a baby and was placed on meds for 2 years. After going seizure free for 2 years, he was weaned off meds and we thought the bad days were behind us. Well....fast forward to Jan 2007, and he had a grand mal seizure while taking a bath. He was alone at the time, but only about 2 minutes as something told me "go get him out of the tub". I walked in the bathroom to find him seizing in the tub which, thankfully, was running but not filling up as the drain was broken. The seizure lasted about 30 minutes.

DS was then put on meds (lamictal) which worked until July of this year when he had a seizure out of the blue. He had another one in Dec. They have upped the meds but I am a basket case wondering when the next one will be.

Does anyone on meds have trouble with short term memory loss/deficiency? We are finding that with DS.

 

[december]

Hmm....I was on meds my senior year of college. It was rough. I had trouble concentrating and my vision got so blurry I could barely read. I've always had perfect vision, but had to wear glasses that year. I know they messed me up pretty bad. So I wouldn't be surprised at any side effects.

 

["Got Disney"]

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.

that's a good thing I am having a hot flash right now. They started getting more frequent the last 2 weeks...the hot flashes that is. I started on Pro gest today so i am hoping that it will help. Pro gest is also suppose to make my threshold higher....cant take Estrogen but Progesterone is okay...I am taking a natural progesterone.

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

That is so important that we dont crawl in a whole and hide. I also put myself through Nursing school and passed with honors even while I was having trouble with seizures....

Great to here your story

I had to reply when I saw this thread...my sweet, lovable DS9 has epilepsy. He had febrile seizures as a baby and was placed on meds for 2 years. After going seizure free for 2 years, he was weaned off meds and we thought the bad days were behind us. Well....fast forward to Jan 2007, and he had a grand mal seizure while taking a bath. He was alone at the time, but only about 2 minutes as something told me "go get him out of the tub". I walked in the bathroom to find him seizing in the tub which, thankfully, was running but not filling up as the drain was broken. The seizure lasted about 30 minutes.

DS was then put on meds (lamictal) which worked until July of this year when he had a seizure out of the blue. He had another one in Dec. They have upped the meds but I am a basket case wondering when the next one will be.

Does anyone on meds have trouble with short term memory loss/deficiency? We are finding that with DS.

Are you talking about permanent short term memory loss or just after a seizure? I never take a shower or bath unless someone is in the house with me...I never swim alone either.

It must be hard to have a child that has this disorder.

I must add that even though I may sound glum in my posts I am very happy and active. My seizures have never kept me down for long, have never kept me from my career or having children or raising them.

My kids were told from me about my epilepcy and what to do if I had a seizure. They saw the first one in August and since I prepared them they were fine. I tell everyone just in case...even though I had only had a few in years and years it is always important to inform anyone that you are around all the time. Even told the teachers that I volunteer for.

So now that I have mad cow disease(what I call my menopause) It will be interesting to see what happens

 

[Sinderelli]

[QUOTE="Got Disney";30164854]

Are you talking about permanent short term memory loss or just after a seizure? I never take a shower or bath unless someone is in the house with me...I never swim alone either.

It must be hard to have a child that has this disorder.

[/QUOTE]

I'm talking permanent short term memory loss- DS is really struggling in school. He is in a new school geared towards kids with "learning differences" and we are hoping it helps. He had an educational eval a year ago, and scored very low on the tests for memory- like 2% if I recall correctly.

 

[kaytieeldr]

I had a seizure in 1991 for no apparent reason, at which time I was put on Dilantin, and one in 2003 because I was stupid (I'd run out of meds and felt fine, so I didn't get the prescription refilled - like I said, stupid). My neurologist added Topomax about 18 months ago, with the goal of weaning off the Dilantin. I'm nervous, but I've just been told recently it's contributing to my tendency to break bones.

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.

Can't do WHAT? No, don't worry - that's rhetorical. Challenge ME like that, will they? Harumph! You alread know you can do anything you choose, that epilepsy isn't a deterrent.

From the site http://www.epilepsy-navigator.com/

FAMOUS EPILEPTICS THROUGHOUT HISTORY
Actors, Artists & Musicians
Budd Abbott
Lindsay Buckingham (Fleetwood Mac)
Richard Burton
Leonardo DaVinci
Gustave Flaubert
Danny Glover
Margaux Hemingway
Elton John
Michelangelo
Nicolo Paganini
Vincent Van Gogh
Neil Young (Rock musician)

Rulers & Statesmen
Alexander the Great
Napoleon Bonaparte
Charles V of Austria
Joan of Arc
Julius Ceasar
Hannibal (Crossed the Alps on an elephant)
Peter the Great
Vladimir Ilyich Lenin
James Madison
Pope Pious IX
Harriet Tubman
William III

Composers
George Fredrick Handel
Robert Schumann
Peter Tchaikovsky
Hector Berlioz

Scientists
Thomas Edison
Alfred Nobel
Sir Isaac Newton
Blaise Pascal (Fr. scientist, philosopher & mathematician)
Pythagoras

Poets, Authors & Philosophers
Aristotle
Lord Byron
Dante
Truman Capote
Lewis Carrol
Agatha Christie
Charles Dickens
Fyodor Dostoyevsky
Edward Lear (Eng. painter & poet)
Vachel Lindsay
Jean Moliere
Edgar Allen Poe
Sir Walter Scott
Socrates
Alfred Lord Tennyson

Athletes
Grover Cleveland Alexander (MLB)
Buddy Bell (MLB)
Allen Faneca (NFL)
Tony Greig (England; cricket)
Gary Howatt (NHL)
Bob Jones (NBA)
Florence Griffith Joyner (Olympic track)
Tony Lazzari (MLB)
Jonty Rhodes (S. Africa; cricket)
Paul Wade (Aussi football)
Greg Walker (MLB)




Mythological

Hercules
(Hence the term Morbus Hurculeus; another term for epilepsy. It was later called "morbus sacer" which means "sacred disease." )

 

[SondraC]

My son (13) has seizures..in fact it has been almost year since we have had a seizure free day. His Doc. wants us to consider V.N.S. therapy.
He has autism...the severe end of the spectrum, unfortunately a fairly big percent of people with autism have seizures.

 

[monkey68]

I'm talking permanent short term memory loss- DS is really struggling in school. He is in a new school geared towards kids with "learning differences" and we are hoping it helps. He had an educational eval a year ago, and scored very low on the tests for memory- like 2% if I recall correctly.

I know my friend had problems with memory loss when he was taking drugs for his seizures. After his surgery, that basically stopped. He was still having seizures while on the medications though, so it could have been an after effect of the seizures. Still didn't hold him back though, he got into med school. He did get extra time for the MCAT, because he was afraid he might get a seizures in the middle of it, which he did, but it wasn't a big one. He had the surgery after his first year of med school, he's now in his third year and doing a neurosurgery elective rotation with the surgeon he went to.

 

[cruizie]

I don't have any help for you but am reading w/ interest. I have a seizure disorder. I have had 3 tonic-clonic seizures. All happened during working out. I can work out w/out a seizure if I am very, very cautious and take a lot of breaks (ellipitical for 5 min, sit down for 5 min). I am seizure free to 9 yrs and med free for 8. I sure hope that as I get older and am facing menapause in a few years that I don't have to deal w/ this again.

Hugs to you!

 

[jwsqrdplus2]

Mom of an epileptic child here!

DD1 (now 10) was diagnosed just after her 4th birthday (Sinderelli, we were in NOLA at the time and DD's Neuro was at Children's!). She was on Zarontin which never fully controlled the seizures. We moved and had to find a new neuro in a new city. Her new neuro added Depakene (liquid form of Depakote) after DD started having tonic clonics. She had about half dozen tonic clonics over a 2-month period when she was 6 1/2 until we the medications balanced properly.

At 10, she has been been seizure free for 3 years and now medication free for 1 year. Knock on wood, the neuro is confident that she has outgrown it, but I still remain on edge especially when dealing with her known triggers!

 

[Sinderelli]

I don't have any help for you but am reading w/ interest. I have a seizure disorder. I have had 3 tonic-clonic seizures. All happened during working out. I can work out w/out a seizure if I am very, very cautious and take a lot of breaks (ellipitical for 5 min, sit down for 5 min). I am seizure free to 9 yrs and med free for 8. I sure hope that as I get older and am facing menapause in a few years that I don't have to deal w/ this again.

Hugs to you!

I wonder if your change in breathing during your workouts brought on the seizures? I know that DS has to do deep breathing during his EEG- the tech said that sometimes triggers seizures in people.

Mom of an epileptic child here!

DD1 (now 10) was diagnosed just after her 4th birthday (Sinderelli, we were in NOLA at the time and DD's Neuro was at Children's!). She was on Zarontin which never fully controlled the seizures. We moved and had to find a new neuro in a new city. Her new neuro added Depakene (liquid form of Depakote) after DD started having tonic clonics. She had about half dozen tonic clonics over a 2-month period when she was 6 1/2 until we the medications balanced properly.

At 10, she has been been seizure free for 3 years and now medication free for 1 year. Knock on wood, the neuro is confident that she has outgrown it, but I still remain on edge especially when dealing with her known triggers!

Great news on the seizure free front! I don't think the fear ever goes away. My son went 5 years without any trouble, and then BAM! He had the seizure in the tub. We probably won't ever be medicine free. My DH has epilepsy, also, although he hasn't had a seizure in almost 18 years. I am praying DS gets to that point.

BTW, even though DH has been seizure free for so long, he refuses to get off the meds for fear of having a seizure at work (he's a contractor) or while driving.

 

[KATHINOWA]

My sister was diagnosed with epilepsy around age 20. Her seizures were always at night (while sleeping) and not often. She started having seizures while awake a few years later. She had surgery 8 years ago (she was about34) and has not had a seizure since. I think she is off all her medications now. We wanted her to stay on the meds (out of fear the seizures would begin) but the neuro really encouraged her to come off meds. She has 3 children (all healthy) that she had while on meds.

She does have an awful memory. She has a hard time with names especially. Not sure if its related to the epilepsy, the meds or the surgery or if it's just her personality.

 

["Got Disney"]

on the discussion of meds. Before being put on Tegretol i was on a variety of different ones. Still having seizures. when I was just on Dilantin I went to a teaching hospital and the Med student that saw me asked me why my Neuro still had me on Dilantin if it was not working? At this time I was having an attack at least once a month. He weaned me off the Dilantin and on to the Tegretol....

And that was the best thing that ever happened to me. I had not had a seizure again for 10 years and the only reason I had that one in 10 years is because I was working on getting Pregnant and so they switched me to Phenobarbital because at that time it was thought to be the safest med to be on during pregnacy....YUCK.......that was terrible...I couldn't even concentrate at all and felt High all the time.

So since it was not working they put me back on the Tegretol and again they stopped. Funny that when the new studies came out that aPhenobarb was not the choice of drug to be on during Preganacy that Tegretol was much safer.

I also did not mention that after having my 2 recent seizures...that when they took my blood level my Tegretol level was way down to 4...usually at least 7 for me. That was very strange and not sure why it went that low.

I am hoping that menopause is not the culprit....but with all I have studied it is not unusual for woman that would have seizures during menses due to hormones fluctuating that they would have this problem during menopause.

So to the moms with children with this what fears do you have that we may be able to help you with? like growing up with a seizure disorder.

 

[JoiseyMom]

DD12 was diagnosed with absence seizures (petite mal) at 7 years old. She was zoning out..

We started her on Keppra...then added lamictal. After about a year she was seizure free on the meds. A year ago we weaned her off the meds and she has been seizure free since. Her form of epilepsy we were told kids more often then not will outgrow it. So we are very happy and hopeful that this is all behind her.

 

[Sinderelli]

Found this thread in my subbed folder and thought I'd add an update- we've had a rough couple of months with DS10..2 seizures in May and at least 3 in June, with one happening in the pool at Camp (where I work). DS is being weaned off the Lamictal and onto Phenobarbitol- which DH has had great results with (seizure ree since 14...he's 34 now). His result with phenobarbitol is what made the neuro lean towards that as a possiblility or DS rather than another drug. We are praying it works!

Fever used to be DS's trigger, but his last few seizures have happened during exercise- basketball, swimming, etc. How do you keep an active, athletic 10 year old still?????

 

[Kennywife]

My seizures have been under control much more as of late. (I take Topamax and Lamictal) My Kenny and I are going to start ttc soon within the next year, so anyone who has had any experience with Epilepsy and pregnancy, let me know.

My job is doing great! I have three, possibly four assignments this year!!!! I'm going to WDW in June 2-7. My parents (who freaked about me traveling solo frequently) have gotten good about it.

Kenny and I are going to celebrate 10 years together in Nov!!!! (Here's hoping for that souveneir)

I'm going to cover Destination D in September.

Plus, going to school and taking care of my g-ma. That's me.

Anna

 

[jiminyC_fan]

My DD had it at the age of two and now her son has it getting it at the age of 2 as well. Both are twins. DD got hers under control a few months later and has been off meds for probably 20 or so years. Grandson is not as lucky. He is now on the ketogenic diet. Just had an MRI that is reflecting brain damage. He's on severall meds and they are currently taking him off Depakote due to low white blood cells. Children's Hospital here in Denver has asked them if they would participate in a genetic research project. My brother has it as well.

Kennywife, I know nothing about Pregnancy and epilepsy but you know I wish the best for you!!! Hugs.

 

[DisGirlAllie]

I've had it since I was eight. I'm fourteen now.
I take Topamax and Lamictal, which are working wonderfully! I haven't had a seizure for about eight months now

 

[HOGFAN]

I have epilepsy due to an intracerebral hemorrhage back in 2004. I currently take Topamax (which is working ) after a failed try at Keppra.

as for that preacher, send me his name and address. I have no shortage for words for him He wont find them in the bible either..well, maybe one..somebody got slew with the jawbone of one