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fluter 
It's been 12 weeks since my daughter has had a seizure and this is a good thing, for sure! I've been sleeping better at night, not so fearful. She's now on 800 mg of Tegretol and 125 of Topimax. I worry about her and depression, partly from the meds and partly from being unemployed for so long. Hopefully she'll be able to wean off of the Tegretol and the Topimax will be the magic elixier we keep waiting for.
I listen to all the turmoil, fear and anxiety of those of you on the groups who aren't having any luck with medications and my heart is heavy. I don't know if this combo will work long term for my daughter, but I sure hope so and I wish that everyone could find the right meds for their own personal chemistry.
I'm off to craft shows in Maine and Rhode Island, and a 17 day fair in Springfield Ma. I hate being away for so long but I have to make a living. It's tough in this economy to be trying to sell anything, and flutes are no exception. I'm working harder than ever, and making less. But I'm breaking even and paying the bills, so I guess I shouldn't complain.
Looking for a puppy.
On March 28, 2009 I went to Washington DC to join the Walk for Epilepsy Research. I got a few people to sponsor me and I drove to Philly first to pick up a friend (from Ma) and then off we went to DC. It was about an 8 hour trip.
It was a drizzly day, overcast and muddy, but honestly, you couldn't dampen the spirits of those who attended. There where so many people there sharing a common cause. The feeling was that I wasn't alone and other's understood. There was an actor there, I'm sorry I forgot his name, Greg ??, he plays Matt on Heros, and he spoke for awhile about his son and about how we are all in this together, he was really inspirational! And then there was the NFL player who told us about the website www.talkaboutit.org and he was wonderful too. He had everyone yelling and waving! They all participated in the walk.
When the walk was over, there was a large tent with lots of information being given out, as well as apples, water and all sorts of zuchinni bread, pumpkin bread and tasty goodies! There where people talking about the legal issues of seizures, there where people with booths dealing with specific diseases of epilepsy and there was people with cameras documenting various stories that people would share.
It was a wonderful experience. We need more research to help us all out of this nightmare. If you get a chance to participate, I recommend it. There's strength in numbers and theres a bond that forms when you see everyone and know that you're not alone.
My daughter is participating in a trial for catamienal seizures. Hormone related seizures. She finished the trial and was given an 'open label' prescription for progesterone. In two months, she only had one seizure day. A definate improvement. I'm keeping my fingers crossed and praying for this month to be uneventful also.
Good luck to all of you, remember, we're not alone.
Love and prayers,
Linda (Fluter)
My seizures overwhelmed my life for several years, right at menopause. I didn't know if I was coming or going, if I wasn't seizing, I was having a hot flash or sweating or filled with anxiety. After the HRT, I started to feel better. Estrogen is supposed to make seizures worst, but somehow when the two where balanced I felt better. My seizures stopped. I got off meds. It's been 8 years and I'm seizure free, med free and off the HRT. Weight gain seems like no big deal.
Now, my daughter is having seizures. Started 6 years ago at 23 years old, with one Gran Mal, has escalated to complex partial seizures, sometimes 3 daily, but usually, 2xs a month. My heart is breaking. I don't know what life feels like in a relaxed state. Every time I relax, another seizure hits and I'm devastated. She's on a trial for hormon related seizures and I honestly believe that this is the cause, since it happened to me at menopause and giving birth was such a labored event (no pun implied) it seems a natural progression to believe that it's hormonal. She hasn't had a seizure when on the progesterone, but when she's off, she still had seizures. Also seems to have seizures with UTI's. Can't figure it out.
She's fortunate that the seizures haven't stopped her from continueing with life. They aren't frequent enough, so she gets the chance to bounce back and continue with work, school and her boyfriend. But they aren't stopping and they are increasing. I'm really scared. Of course talking to others who don't understand the nature of a seizure is pointless, they don't understand what it feels like to be so vulnerable and to have a post ictal phase that completely disorients you and makes you forget the simpliest of life's tasks, like names!
Still, there's a strenghth that comes each time we get over another hump, and a bond that forms between us that's unbreakable. The strength brings resolve to keep trying new things and the bond reinforces our love for each other, and makes us continue to hope for an answer.
We won't give up. Can't.
Linda
