Hi,
Even though I'm new here, I've read through quite a few of the stories in these forums and I feel like I'm one of the team. Here's my background.
I begin having Grand Mal (tonic-clonic) seizures since at the age of 5. At around the age of 20, I began to take Valproic Acid, before Abbott ever branded it Depakote, and even before it was a legal drug in the USA, over 30 years ago.
At that time, I was put on it on an experimental basis. I was a patient through a neurologist at UCLA. Back then, Valproic Acid was branded as Epilim in Europe. It was easily purchased over the counter and my father had friends who smuggled it into this country. It was strange that I had signed the waivers, but we still had to go outside the country to get the drug.
Prior to getting onto Valproic Acid, the last drug I'd been taking was Dilantin. It hadn't been very successful as I experienced frequent head shaking, (myoclonic jerks) throughout the day. Stressful situations always seemed to be one primary indicator that could ignite this myoclonos activity, aggravate and propel it. They only lasted for a brief second or two and I was always conscious. They were just greatly distracting and taxing on my brain. Successive, incessant jerks would be the precursor to developing into a major tonic-clonic seizure. In a years time, I would usually end up averaging about three or four of these tonic-clonic seizures.
Even before the full transition into Valproic Acid, my head had become still. It was finally in a calm place, absent of any head shakes. OMG!!! At that early stage I was confident that seizures would no longer restrict me as they had. My world was going to change drastically and I knew that better things were coming. A big gain was being able to interact and function socially in a way I was never able. A door had been unlocked and a new path was unfolding. It was a very cool time. Being seizure free didn't guarantee unlimited serenity, but what a game changer.
The drug was finally FDA approved for Abbott Laboratories approximately one and a half years after I began using the Epilim version. The version I used was named Depakote. I was using a 1500 mg a day dosage.
Unfortunately, after 30 years of being seizure free, other side effects were becoming evident. Over the last several years, I'd experienced some occasional stomach pains. They were severe and I knew the Depakote had contributed. I hadn't been seeing a neurologist for over 20 years and had only been seeing a GP to have my blood levels checked. Those had been fine.
I finally decided to see a Neurologist. He chose to get me off of Depakote due to the length of time I'd been on it and the effects I'd experienced. I'd been advised that newer, safer AED drugs were available. The choice was to get me on Zonagran, (Zonisamide the generic version). It was touted as being a far less risky option in terms of side effects with no need to do blood levels. Most importantly, it was expected to manage my seizure condition.
The transition was a nightmare. It started in early April of 2011 and lasted for 6 weeks. During the transition stage, Depakote and Zonisimide created a very strange condition, especially having to work and drive. You could walk, you could talk, but at certain times, you felt that your motor skills were being under-clocked. Things got just plain weird. It felt odd to drive and work, and it even slowed my pace with "Words with Friends".
onder:
There were also slight head vibrations that interrupted my sleep. When lying quietly on a pillow, I'd occasionally swallow while sleeping and then experience these slight vibrations. They were all mostly annoyances, but enough to disrupt your otherwise normal day. According to some specialists at USC, these may have been due to the dominant characteristic of Depakote while in combination with most any other AED while in a transition period.
All the weirdness subsided and life calmed down when I finally stopped taking the last doses of Depakote and went primarily on Zonisimide. However, being on Zonisamide definitely has a lower efficacy on me than I had with Depakote. This was my greatest concern about making a transition off of a drug that gave me a life that was seizure free. Even better, how about all this is enough to just fricken scare you *hitless. I don't think there is any better way to doll up that one.
Moving right along. I now experience a slight bit of myoclonis, maybe one to three head shakes a day. Sometimes I can go days without. Compare that with Depakote in where I would experience a head shake maybe one or two times a year. However, most importantly, I've had no tonic-clonic seizures and I definitely feel those are still under control.
Aside from the lower efficacy of being on Zonisamide, I can't stand the numbing sensation it leaves in my mouth. I've heard that it's one of the known side effects. Even though this drug doesn't require blood work, it's hard to understand that a drug that leaves a numbing sensation in your mouth can be so good for you.
I spoke to my neurologist and expressed my concern in getting off the Zonisamide. He said there were other drugs options that may work with my seizures and may quite possibly have a lesser degree of side effects than I'm currently experiencing. His choice was Keppra or Lamictal. Somehow he had a feeling that I'd be reading up on whatever he proposed. He then told me that after my research I could let him know which drug I'd feel more comfortable to start with.
Decisions, decisions...blah, blah, blah. Which new seizure drug to choose? If anybody has an understanding or similar experiences, all your feedback is greatly appreciated. I'm taking notes.
Btw, I've also looked into the alternative section and read about Piracetam. If anybody's had any experience with this supplement or other alt's, I would like to hear more about those as well.
Hope the novel-like approach wasn't too lengthy for the forum. Sometimes the synapses just snap into overdrive. And, thought the Depakote story might be of some interest.
Thanks
Even though I'm new here, I've read through quite a few of the stories in these forums and I feel like I'm one of the team. Here's my background.
I begin having Grand Mal (tonic-clonic) seizures since at the age of 5. At around the age of 20, I began to take Valproic Acid, before Abbott ever branded it Depakote, and even before it was a legal drug in the USA, over 30 years ago.
At that time, I was put on it on an experimental basis. I was a patient through a neurologist at UCLA. Back then, Valproic Acid was branded as Epilim in Europe. It was easily purchased over the counter and my father had friends who smuggled it into this country. It was strange that I had signed the waivers, but we still had to go outside the country to get the drug.
Prior to getting onto Valproic Acid, the last drug I'd been taking was Dilantin. It hadn't been very successful as I experienced frequent head shaking, (myoclonic jerks) throughout the day. Stressful situations always seemed to be one primary indicator that could ignite this myoclonos activity, aggravate and propel it. They only lasted for a brief second or two and I was always conscious. They were just greatly distracting and taxing on my brain. Successive, incessant jerks would be the precursor to developing into a major tonic-clonic seizure. In a years time, I would usually end up averaging about three or four of these tonic-clonic seizures.
Even before the full transition into Valproic Acid, my head had become still. It was finally in a calm place, absent of any head shakes. OMG!!! At that early stage I was confident that seizures would no longer restrict me as they had. My world was going to change drastically and I knew that better things were coming. A big gain was being able to interact and function socially in a way I was never able. A door had been unlocked and a new path was unfolding. It was a very cool time. Being seizure free didn't guarantee unlimited serenity, but what a game changer.
The drug was finally FDA approved for Abbott Laboratories approximately one and a half years after I began using the Epilim version. The version I used was named Depakote. I was using a 1500 mg a day dosage.
Unfortunately, after 30 years of being seizure free, other side effects were becoming evident. Over the last several years, I'd experienced some occasional stomach pains. They were severe and I knew the Depakote had contributed. I hadn't been seeing a neurologist for over 20 years and had only been seeing a GP to have my blood levels checked. Those had been fine.
I finally decided to see a Neurologist. He chose to get me off of Depakote due to the length of time I'd been on it and the effects I'd experienced. I'd been advised that newer, safer AED drugs were available. The choice was to get me on Zonagran, (Zonisamide the generic version). It was touted as being a far less risky option in terms of side effects with no need to do blood levels. Most importantly, it was expected to manage my seizure condition.
The transition was a nightmare. It started in early April of 2011 and lasted for 6 weeks. During the transition stage, Depakote and Zonisimide created a very strange condition, especially having to work and drive. You could walk, you could talk, but at certain times, you felt that your motor skills were being under-clocked. Things got just plain weird. It felt odd to drive and work, and it even slowed my pace with "Words with Friends".
onder: There were also slight head vibrations that interrupted my sleep. When lying quietly on a pillow, I'd occasionally swallow while sleeping and then experience these slight vibrations. They were all mostly annoyances, but enough to disrupt your otherwise normal day. According to some specialists at USC, these may have been due to the dominant characteristic of Depakote while in combination with most any other AED while in a transition period.
All the weirdness subsided and life calmed down when I finally stopped taking the last doses of Depakote and went primarily on Zonisimide. However, being on Zonisamide definitely has a lower efficacy on me than I had with Depakote. This was my greatest concern about making a transition off of a drug that gave me a life that was seizure free. Even better, how about all this is enough to just fricken scare you *hitless. I don't think there is any better way to doll up that one.
Moving right along. I now experience a slight bit of myoclonis, maybe one to three head shakes a day. Sometimes I can go days without. Compare that with Depakote in where I would experience a head shake maybe one or two times a year. However, most importantly, I've had no tonic-clonic seizures and I definitely feel those are still under control.
Aside from the lower efficacy of being on Zonisamide, I can't stand the numbing sensation it leaves in my mouth. I've heard that it's one of the known side effects. Even though this drug doesn't require blood work, it's hard to understand that a drug that leaves a numbing sensation in your mouth can be so good for you.
I spoke to my neurologist and expressed my concern in getting off the Zonisamide. He said there were other drugs options that may work with my seizures and may quite possibly have a lesser degree of side effects than I'm currently experiencing. His choice was Keppra or Lamictal. Somehow he had a feeling that I'd be reading up on whatever he proposed. He then told me that after my research I could let him know which drug I'd feel more comfortable to start with.
Decisions, decisions...blah, blah, blah. Which new seizure drug to choose? If anybody has an understanding or similar experiences, all your feedback is greatly appreciated. I'm taking notes.
Btw, I've also looked into the alternative section and read about Piracetam. If anybody's had any experience with this supplement or other alt's, I would like to hear more about those as well.
Hope the novel-like approach wasn't too lengthy for the forum. Sometimes the synapses just snap into overdrive. And, thought the Depakote story might be of some interest.
Thanks