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I had my first sz in a month when I was doing so good urrrrrrg!!!

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Epilepsy
How long have u had E
1-5 yrs - 33.3% - 1 votes
6-11 - 33.3% - 1 votes
12-20 - 0.0% - 0 votes
21-30 - 0.0% - 0 votes
31-40 - 0.0% - 0 votes
over forty years - 33.3% - 1 votes
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Posted 8/21/2007 6:57 PM (GMT 0)
Hello everyone I need talk and need support.

I had a seizure today first since July 10th. I was doing so good,and I
hadn't done that well since 90-91 when I had 8-10 months seizure free.
Everyone I was with they just freaked as usual .I didn't remember the seizure but was told about and it was a small one.

I'm depressed and just want to scream. Being med resistant isn't any fun and also allergic to Keppra,Lamictal,Gabitril,Depakote and a few others.

Belinda eyes mad nono
Posted 8/22/2007 3:30 AM (GMT 0)

Wayvonne,

I know how frustrating that is.  I have been trying to get 90 days seizure free since last August.  I think the most I got up to was 56 days and I was so excited.  I was depressed after that plus my medication was increased which always knocks me off my feet for about two weeks, at least when it's an increase in Keppra.

Are you not able to take any seizure medications?

We just have to keep starting all over again, it's better than the other option.  :-)

Carla

Posted 8/22/2007 10:43 AM (GMT 0)

Hi there,

I have been epileptic for 7-8 years now and I am one of the lucky ones with very good control. I noticed that Carbamazipine (Tegretol) wasnt on your list of meds that you cant take... Have you tried it? Carbamazipine is what I take and I have done since I was first diagnosed. I too share your frustration in trying to achieve a set period without seizures. For me, I need to be sz free for 12 months so I can get my driving licence back. I had a sz in June 2006 and then another in December 2006. I felt so down after managing 6 months, only to find I had to start again! I have now managed 9 months so I am nearly there. The irony is that once I have done 12 months (in December 2007) I am unlikely to be able to afford to run a car! lol

Darren

Posted 8/22/2007 11:21 AM (GMT 0)
Carla,

Im able to take meds, Im med resistant to anything in the Tegretol family that's not the original Tegretol.
It was Lyrica that I got my hopes up about.
Wayvonne eyes
Posted 8/22/2007 11:26 AM (GMT 0)
Darren,

I take Tegretol and I've taken it since it's came out.
I can't come off though without seizing like crazy.
Im refractory and as the docs say a hard case.

Wayvonne
Posted 8/23/2007 5:39 AM (GMT 0)
Tegretol seems to be a good drug for you and seems to be working quite well. Perhaps there are lifestyle changes that you can make to help as well rather than changing the med. Just changing the things that trigger your sz.
Posted 8/31/2007 12:49 PM (GMT 0)
There are very few things that trigger my sz's.
Flashing lights, heat&humidity, stress,crowds.

Most of my sz's come on without any trigger.
Im refractory.
There's nothing in my life I can change that I haven't already done.

Belynda
Posted 9/1/2007 5:34 AM (GMT 0)
I know its slightly old fashioned, but have you tried/discussed Epilim with your doctor? My mum took it a while ago (Before she had Lamictal) and got on all right with it. As I remember, it was the size of the tablets that was the issue!

Posted 9/1/2007 7:15 AM (GMT 0)

djdaz_1985 said...
I know its slightly old fashioned, but have you tried/discussed Epilim with your doctor? My mum took it a while ago (Before she had Lamictal) and got on all right with it. As I remember, it was the size of the tablets that was the issue!

I've never discussed Epilim with him.
We have gone over all the drugs I have taken and can take for my sz type. I think he would have mentioned it if could have taken it for my seizures. I'm just out of options for myself and my epilepsy.

Belinda
sad
Posted 10/1/2007 2:02 AM (GMT 0)
I had refractory Right temoral lobe epilepsy for over 25 years. I tried most of the medication 8-9 without alot of sucess. I went for brain surgery because it was my only hope of being seizure FREE. the neurologists gave me a 70% chance of being seizure FREE. I had surgery June 2002 and have been seizure FREE since. I still take a low dose of lamictal and will continue to stay on it.

Good luck finding a cure, I know the feeling all to well.

God Bless,

Mercyme
Posted 10/11/2007 10:37 PM (GMT 0)

Belynda,

I can relate. I just had a grand mal seizure in August - hadn't had one in 17 years (and had only had 3 in my life). Since then, I've had partial seizures in the evenings several times a week (or daily if you count the twitching as seizures, which my doctor does). I'm okay when I'm well rested. It's the evenings that are tough. Lamictal is helping some, but not controlling them yet. We keep increasing the dose and I keep losing days of my life adjusting/sleeping. Doctor calls it "intractable" temporal lobe epilepsy (it wasn't diagnosed before).

I'm starting to slip into depression. I can work my way out of it and feel like a fighter sometimes, but other times I'm so tired and sad that I don't feel like I have any fight left.

I chatted a bit with some of the members here for the first time today. That helped for a while. Right now, I'm just tired and down.

sad

I just read a book entitled Complementary and Alternative Therapies for Epilepsy that held high hopes for accupressure and bilateral massage (and biofeedback but the doc said biofeedback isn't worth the effort). It also touted Omega 3 & 6. It said the the ketogenic diet might be effective for very hard to treat cases. I don't know if you've gone down those paths already... I will if I need to, but one thing at a time...

Sending good thoughts your way.

Sugar1110

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