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ET

Anyone suffer from absence seizures?? Plz Help!!

Hi Guy's,

A little background:
I've been living with epilepsy for the past ten years. It has been somewhat controlled..... only 2-4 generalized seizures p/year , but I space out a lot with absence seizures. I suffer from regular jerking of the limbs, and lose my train of thought a lot. If I start jerking too much and ignore the warnings, that's when I have suffered a generalized.

When diagnosed at 17 I was put onto Depakote 1500mg p/day (my levels are good %), however, this did nothing for my 'spacing out' and jerking. On top of the Depakote I was ordered to take additional Tranxene (a form of Benzo) as needed. This stops the 'spacing'.

My tolerance levels to Tranxene have sky rocketed!! Where as 1-2 used to do the trick, it's now 8-12 (p/day)!! - and even with that amount I struggle.

I saw my DR. couple weeks ago, he stressed the importance of lowering my intake. I'm currently withdrawing, and I'm currently down to 6 p/day.... not an easy process at all. Spacing worse than ever, don't feel safe taking on the simplest of physical tasks, mood swings, etc. But I have to fight through. - The side effects were terrible... major fatigue, moody, and even problems getting or maintaining an erection... I'm only 27, God I hope the effects are reversible!!!

In a nutshell; I know my DR wants me off the benzo's , I just know that when back on only Depakote my relentless absence seizures will not be under control (Depakote never did help with that).

Anyone else suffer/share a similar story?? How did you manage?? What medicines worked for you?? Any advice or help would be a really big help!!

Thanks in advance - E.T.

"When going through hell... Keep on going" - Winston Churchill

Comments

Re: Anyone suffer from absence seizures?? Plz Help!!

Assuming that your neuro tried to increase the Depakote to help with the absence seizures, there are other non-benzo meds that he can try.  Zarontin used to be the first line drug.  Lamictal may work, too.  As I said there are others he can try.  Give him a call.

Karen

Re: Anyone suffer from absence seizures?? Plz Help!!

After being on a medication for awhile the dosage may need increasing. If you are on more than 1 medications the doctor may want to chenge one to another medication that works with your other or even change your medications completely.

The old saying is Been there Done that

There are many different medications and different combinations of medications that can be used for different seizures

I hsve been on many medication and combinations in the 50+ years I have been living with epilepsy

Currently I am on keppra and we added vimpat a few months ago. With the combination my seizures have been reduced from 2-3 a week to 1 every 6-12 days

Hope this helps

Re: Anyone suffer from absence seizures?? Plz Help!!

Hi ET,

I am guessing your neurologist has tried upping your dose of Depakote but it has not worked for you. I personally never heard of Benzo so I can't help you there. But, I do have epilepsy and have had it for 10yrs now. I have many type of seizures one being absence seizures. I have also tried numerous medications to control my seizures. For myself it took a long time to find a med that would control my absence seizures but this could have changed since I was diagnosed in 2004. There are new meds coming out and technology to help medical conditions everyday. So who knows. When I first was diagnosed I tried Depkene,Depakote,and Depakote ER none of these worked. One med that actually did help me was Zarontin, it helped a little bit for my absence seizures though it caused a lot of other seizures like severe myoclonics and numerous side effects. The ones I remember I have also tried were Lorzepam,Carbazempine,Dilantin,Topamax,Keppra,Keppra XR. The drug I am on now is Lamictal. It has worked wonders for all of my types of seizures and have been pretty much seizure free. I would definitely talked to your neurologist in trying another medication or even try alternative treatments example supplements they can help too.

Wish you the best of luck. ~JMR12290 

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