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I put my story in the comments cause it’s wouldn’t let me type that much lol please read and give me recommendations, advice, opinions! Anything!

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I have a long story, when I

Submitted by Chyanna on Thu, 2019-02-21 - 13:16

I have a long story, when I was 4 turning 5 I was diagnosed with ALL Leukemia. They started me on Chemo, the chemo (L-asparaginase) I was taking were leg shots, on the last one to be exact. I then ended up having a stroke because of the chemo. I was the fourth in the US to have a stroke with this drug. The stroke effected my right arm and both legs. I am now 26 and use my right arm as my dominant arm. Now I am able to walk, but it is different! Anyway, I’m trying not to make this terrribly long, so people will read it!I starting having PARTIAL SEIZURES after my stroke but after I was able to go home they put me on a seizure medication that just made me sleep after every time I took it and I took it 3 times a day. About to start back in school, my mom took me off. NEVER had another seizure, until I was 15. (Around the time I became a “woman” and started BC) My periods were so bad that is why I was started on BC at such a young age. Also it wasn’t a partial seizure it was a grand mal, I also hit my head and ended up with a concussion. So I was put on medication again (Keppra). During that time the side effects of Keppra were so terrible I had to switch medication. From then, up until I was 22. I had taken so many different seizure medications. Also my seizures were once every 6-8 months. It wasn’t a totally terrible situation,at the time. As soon as I graduated college is when it went downhill from there. I went 6 months looking for a job, finally found one. I was living alone. Had a seizure alone at my house. My anxiety from then just was terrible. Anytime I was alone I was scared. But I just tried to overcome that cause I was alone a lot! I ended up having seizures more often so I ended up quitting my job and moving back home with my parents in 2016. My seizure now were happening once ever 4 weeks, just about clockwork. I stopped medication whenever I moved back home because the medication was NOT controlling my seizures. They haven’t been for a few years I just kept taking them. Side effects were terrible, I figured that was why my anxiety was so bad. I ended up getting on an anxiety medication (Lexapro) before I had moved home and that medication put me in Serotonin Syndrome, my boyfriend at the time was scared for me. My eyes were dilated, I couldn’t walk, it was like my muscles were not there, my coordination was not there, and I had rapid heart rate. So I stopped that medication. My body obviously doesn’t take medication very well. It’s like 10x worse on the side effects for me. Obviously the chemo was the first (side effect was strokes)So I stopped taking medication, only BC still. Still seizures came. Summer of 2018 I decided we need to go to Mayo Clinic to get some answers, so, we did. Made the trip to Minnesota. Was there for a week for everything my seizures, anxiety, and my walking. Did MRI and an EEG. EEG came back normal. Also my MRI showed nothing new, of course I have scarring from the stroke. And of course that is usually the cause of my seizures(supposedly) I was VERY disappointed in the neurologist there at Mayo, they just said I needed to be on medication, but I have been on over 10 different kinds. None have controlled them. He decided to put me on a newer drug (which cost $1000 WITH insurance) there was no way I could afford that. So I told him to find something else. Tegritol was the next drug he put me on, I also took it at 5. That was the drug that made me sleep. And it still did at 25 years old. So I ended that as well, it also didn’t control my seizures.I myself feel like there is a trigger to my seizures. I do not feel like I am epileptic. Because why did I go 10 years without seizures and they just start back? Also they just gradually have gotten worse being on medication. Now they are just pretty regular not being on medication. Like could it be hormone related? Could it be heart related? I even went to a heart clinic. He said that my tests proved that I had POTS syndrome. Which is pretty much a good reason on why I always have seizures when standing. It’s causes an increase in heart rate from lying down position to stand up position. Which is exactly what happens to me. So my heart doctor put me on a medication that is suppose to help POTS patients (Midodrine) I took it for 4 months. During this 4 months I still had seizures he kept increasing until he couldn’t anymore and the last time he Increased it I went 7 weeks seizure free (the longest in 3 years) but still he said it isn’t working so we should stop it. So now I just decided to even stop my BC. So now I am only taking vitamins. Still waiting around for that next seizure. I am not seeing a neurologist at this time just because of the fact all most want is me on medication, medication that doesn’t work for me. But I need some information for the VNS implant. I have done some research and have found that most end up with this when medication does not work. I’m just trying to get my life back.

I have a long story, when I was 4 turning 5 I was diagnosed with ALL Leukemia. They started me on Chemo, the chemo (L-asparaginase) I was taking were leg shots, on the last one to be exact. I then ended up having a stroke because of the chemo. I was the fourth in the US to have a stroke with this drug. The stroke effected my right arm and both legs. I am now 26 and use my right arm as my dominant arm. Now I am able to walk,  but it is different! Anyway, I’m trying not to make this terrribly long, so people will read it!I starting having PARTIAL SEIZURES after my stroke but after I was able to go home they put me on a seizure medication that just made me sleep after every time I took it and I took it 3 times a day. About to start back in school, my mom took me off. NEVER had another seizure, until I was 15. (Around the time I became a “woman” and started BC) My periods were so bad that is why I was started on BC at such a young age. Also it wasn’t a partial seizure it was a grand mal, I also hit my head and ended up with a concussion. So I was put on medication again (Keppra). During that time the side effects of Keppra were so terrible I had to switch medication. From then, up until I was 22. I had taken so many different seizure medications. Also my seizures were once every 6-8 months. It wasn’t a totally terrible situation,at the time. As soon as I graduated college is when it went downhill from there. I went 6 months looking for a job, finally found one. I was living alone. Had a seizure alone at my house. My anxiety from then just was terrible. Anytime I was alone I was scared. But I just tried to overcome that cause I was alone a lot! I ended up having seizures more often so I ended up quitting my job and moving back home with my parents in 2016. My seizure now were happening once ever 4 weeks, just about clockwork. I stopped medication whenever I moved back home because the medication was NOT controlling my seizures. They haven’t been for a few years I just kept taking them. Side effects were terrible, I figured that was why my anxiety was so bad. I ended up getting on an anxiety medication (Lexapro) before I had moved home and that medication put me in Serotonin Syndrome, my boyfriend at the time was scared for me. My eyes were dilated, I couldn’t walk, it was like my muscles were not there,  my coordination was not there, and I had rapid heart rate. So I stopped that medication. My body obviously doesn’t take medication very well. It’s like 10x worse on the side effects for me. Obviously the chemo was the first (side effect was strokes)So I stopped taking medication, only BC still. Still seizures came. Summer of 2018 I decided we need to go to Mayo Clinic to get some answers, so, we did. Made the trip to Minnesota. Was there for a week for everything my seizures, anxiety, and my walking. Did MRI and an EEG. EEG came back normal. Also my MRI showed nothing new, of course I have scarring from the stroke. And of course that is usually the cause of my seizures(supposedly) I was VERY disappointed in the neurologist there at Mayo, they just said I needed to be on medication, but I have been on over 10 different kinds. None have controlled them. He decided to put me on a newer drug (which cost $1000 WITH insurance) there was no way I could afford that. So I told him to find something else. Tegritol was the next drug he put me on, I also took it at 5. That was the drug that made me sleep. And it still did at 25 years old. So I ended that as well, it also didn’t control my seizures.I myself feel like there is a trigger to my seizures. I do not feel like I am epileptic. Because why did I go 10 years without seizures and they just start back? Also they just gradually have gotten worse being on medication. Now they are just pretty regular not being on medication. Like could it be hormone related? Could it be heart related? I even went to a heart clinic. He said that my tests proved that I had POTS syndrome. Which is pretty much a good reason on why I always have seizures when standing. It’s causes an increase in heart rate from lying down position to stand up position. Which is exactly what happens to me. So my heart doctor put me on a medication that is suppose to help POTS patients (Midodrine) I took it for 4 months. During this 4 months I still had seizures he kept increasing until he couldn’t anymore and the last time he Increased it I went 7 weeks seizure free (the longest in 3 years) but still he said it isn’t working so we should stop it. So now I just decided to even stop my BC. So now I am only taking vitamins. Still waiting around for that next seizure. I am not seeing a neurologist at this time just because of the fact all most want is me on medication, medication that doesn’t work for me. But I need some information for the VNS implant. I have done some research and have found that most end up with this when medication does not work. I’m just trying to get my life back. 

I have a long story, when I was 4 turning 5 I was diagnosed with ALL Leukemia. They started me on Chemo, the chemo (L-asparaginase) I was taking were leg shots, on the last one to be exact. I then ended up having a stroke because of the chemo. I was the fourth in the US to have a stroke with this drug. The stroke effected my right arm and both legs. I am now 26 and use my right arm as my dominant arm. Now I am able to walk, but it is different! Anyway, I’m trying not to make this terrribly long, so people will read it!I starting having PARTIAL SEIZURES after my stroke but after I was able to go home they put me on a seizure medication that just made me sleep after every time I took it and I took it 3 times a day. About to start back in school, my mom took me off. NEVER had another seizure, until I was 15. (Around the time I became a “woman” and started BC) My periods were so bad that is why I was started on BC at such a young age. Also it wasn’t a partial seizure it was a grand mal, I also hit my head and ended up with a concussion. So I was put on medication again (Keppra). During that time the side effects of Keppra were so terrible I had to switch medication. From then, up until I was 22. I had taken so many different seizure medications. Also my seizures were once every 6-8 months. It wasn’t a totally terrible situation,at the time. As soon as I graduated college is when it went downhill from there. I went 6 months looking for a job, finally found one. I was living alone. Had a seizure alone at my house. My anxiety from then just was terrible. Anytime I was alone I was scared. But I just tried to overcome that cause I was alone a lot! I ended up having seizures more often so I ended up quitting my job and moving back home with my parents in 2016. My seizure now were happening once ever 4 weeks, just about clockwork. I stopped medication whenever I moved back home because the medication was NOT controlling my seizures. They haven’t been for a few years I just kept taking them. Side effects were terrible, I figured that was why my anxiety was so bad. I ended up getting on an anxiety medication (Lexapro) before I had moved home and that medication put me in Serotonin Syndrome, my boyfriend at the time was scared for me. My eyes were dilated, I couldn’t walk, it was like my muscles were not there, my coordination was not there, and I had rapid heart rate. So I stopped that medication. My body obviously doesn’t take medication very well. It’s like 10x worse on the side effects for me. Obviously the chemo was the first (side effect was strokes)So I stopped taking medication, only BC still. Still seizures came. Summer of 2018 I decided we need to go to Mayo Clinic to get some answers, so, we did. Made the trip to Minnesota. Was there for a week for everything my seizures, anxiety, and my walking. Did MRI and an EEG. EEG came back normal. Also my MRI showed nothing new, of course I have scarring from the stroke. And of course that is usually the cause of my seizures(supposedly) I was VERY disappointed in the neurologist there at Mayo, they just said I needed to be on medication, but I have been on over 10 different kinds. None have controlled them. He decided to put me on a newer drug (which cost $1000 WITH insurance) there was no way I could afford that. So I told him to find something else. Tegritol was the next drug he put me on, I also took it at 5. That was the drug that made me sleep. And it still did at 25 years old. So I ended that as well, it also didn’t control my seizures.I myself feel like there is a trigger to my seizures. I do not feel like I am epileptic. Because why did I go 10 years without seizures and they just start back? Also they just gradually have gotten worse being on medication. Now they are just pretty regular not being on medication. Like could it be hormone related? Could it be heart related? I even went to a heart clinic. He said that my tests proved that I had POTS syndrome. Which is pretty much a good reason on why I always have seizures when standing. It’s causes an increase in heart rate from lying down position to stand up position. Which is exactly what happens to me. So my heart doctor put me on a medication that is suppose to help POTS patients (Midodrine) I took it for 4 months. During this 4 months I still had seizures he kept increasing until he couldn’t anymore and the last time he Increased it I went 7 weeks seizure free (the longest in 3 years) but still he said it isn’t working so we should stop it. So now I just decided to even stop my BC. So now I am only taking vitamins. Still waiting around for that next seizure. I am not seeing a neurologist at this time just because of the fact all most want is me on medication, medication that doesn’t work for me. But I need some information for the VNS implant. I have done some research and have found that most end up with this when medication does not work. I’m just trying to get my life back.

Hi, I also have complex

Submitted by T. on Thu, 2019-03-14 - 21:53

Hi, I also have complex partial seizures and have been on almost every seizure medication. Every medication you mentioned in your post I've taken. I had my VNS implant in 2013. It mainly reduces the severity of the seizure and sometimes prevents one from occurring. When I have my auras I use my magnet. Sometimes it won't progress any further. I'd say my VNS prevented me from having a full on seizure 70 percent of the time. The one thing I wished I'd known before my surgery was how it causes shortness of breath. I had Right Temporal Lobectomy this Febuary and I haven't had a seizure since. I'm having my doctor turn mine off my VNS. I'm not trying to discourage you from getting a VNS just know it won't get rid of the seizures. If surgery was an option before my VNS I personally wouldn't have gotten the VNS.