Learning....

[kristikay]

I was diagnosed as having partial complex seizures in Jan. of this year. I had suffered for many years with what I was told by countless primary docs, neurolgists, and ER docs simply migraines....migraines that lasted for 5 to 10 days at a time, migraines that caused me to slur, loose memory of days, loose the ability to walk properly, write, think, migraines that caused me to feel like something really bad was going to happen, like I might die. On several occasions before I was diagnosed I got up in the night and got things out of the freezer, moved various things around the house, and was standing over my husband with a hand full of forks...all with no memory.
In Jan. I was hospitalized by my new primary doc. who called in a new neurologist. The neur asked me if seizures run in my family. Ordered an EEG and I went into seizures and was diagnosed. Since then I have been on Topriramate as a constant. In addition on and off of Dilantin and Trileptal. and I am now on Vimpat. I am doing better. This has certainly been and still is a learning experiance...

 

[mel239]

It seems we could all write a book about our fantastic experiences.You are not alone in your experinces.I dont share them except on this forum and a little bit with my epi because people still seem to believe that if you have those outlandish tales you must be unbalanced and I dont want to lose any more friends than I already have.Plus its too embarrassing for me to be that forthcoming in person.

 

[Nakamova]

The road to diagnosis can be a bumpy one, to say the least. It seems like many of the folks here have had to get second and third opinions before finding a neurologist or epileptologist that could figure it out. So sorry Kristikay that you had to go through all that, and it's great that you are doing better.

 

[Cint]

Hi Krisikay,

Sorry to hear you had to go the long, difficult road before receiving the correct diagnosis, but I'm glad you found your way here hope you keep on doing better. As mel said, we could all write our own books about our experiences with this "mysterious" disorder.

 

[RobinN]

Kristikay - I had a 30+ yr history of migraines. I would be in a fetal position for about 4 days. Tried every med that was recommended. Some helped for a while then, when I realized I needed more and more, I knew something needed to change. So I was determined to figure out WHY I had migraines every month.

A doctor recommended magnesium, and what a wonder... I have not had a migraine in about 5 years. I take about 800 mg per day. I began with an ionic variety, and now found a sustained release that seems to work rather well. The only times I begin to get twinges... and I know the feeling rather well, I realize I have been playing around with not taking my supplements regularly.

My daughter also takes it for her seizure control. It was perscribed by her neurologist and certainly can't hurt her. She also takes 800 mg per day.

I hope this info can help you.

 

[mel239]

I feel for all who havent found a clearcut dx.I was lucky,I only struggled and lost 5 mos of my life.my primary immed.sent me to main campus of Cleveland Clinic to an Epi.I only got screwed around by one neuro in Lorain who did tests,sad I was fine and "did I just want an excuse for work and for how long" At this point I hadnt showered or gotten out of my pjs in over a month.I just wanted to scream at him and tell him I was losing my house because of this.On top of that,he refused to turn in any medical and I went 3 mos without a check.In closing,it is nice to have a dx but its still a struggle

 

[Endless]

Wow, Kristikay,

Your journey has been a long one. Believe me, we understand.

I was misdiagnosed with migraines, "menapause," stress, and a whole host of other things - like those would cause seizures. Not. Hmmmph. Then the 2nd neurologist I saw referred me to an epi, who knew immediately what was wrong with me - Temporal Lobe Epilepsy. Then there was (still is!) the march through a bunch of different drugs looking for the right one. Now my seizures are mostly under control. But oh... the side effects! Ugh.

I used to have migraines, too. They were mind-splitting and weren't helped my anti-migraine meds, or even by painkillers like hydrocodone. I've since found out my migraines are postictal (a result of the seizures). Since my seizures are mostly under control now, so are the migraines.

Your description of your complex partials... same with me. During seizures I used to move things around at work, and after I came out of it couldn't find anything and thought people were messing with my stuff. It made me quite paranoid. Out at restaurants I've tossed napkins and silverware on the floor, said rude things, etc. One time I had a kind of dream-like memory of putting the napkin in my lap and a lemon wedge in my tea, all very polite. Not so... I dropped 3 sets of napkins and silverware on the floor, and threw lemon wedges 8 feet away at a neighboring table, as reported to me later by the people I was with. My response was, "you're lying!" Of course they weren't. I had a complex partial seizure.

It's still a learning experience for me, too. Especially about all the various drugs and their effects. I'm still getting surprises, especially the things that they don't tell you about in the package insert.

 

[kristikay]

Thanks for all of the kind words its nice to know I'm among friends.

I am doing much better now that I'm on the Topriamate and Vimpat. I don't *think* I've had a seizure since the first of July. As for the migraines mine were also postictal and I haven't had one in months. The Vimpat has been the first med to control the seizures. Fingers crossed that it keeps working.