experiences with Anticonvulsant Hypersensitivity Syndrome

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Hello everyone,

I recently had a confirmed diagnosis of Temporal Lobe Epilepsy after 9 years of trial and error shifting from diagnosis of migraines, to possible hypoglycemia, and back to partial complex seizures. I have never had a abnormal EEG, and only recently had an MRI pick up on abnormalities characteristic of Temporal Lobe epliepsy. When I first saw a neurologist 8 years ago he perscribed Lamictal, four weeks later I woke up with a head to toe rash, fever, and after 3 trips to the ER was admitted for 4 days with a Hepititius caused by a hypersensitivity to lamictal. After 3 months of recovering I was placed on Topamax which increased my seizures, and made me sick, then Keppra which did not touch the seizures. By that time I was frustrated with the poor care from my nerologist (who still was baffled by the severe reaction to lamictal and was not conviced that I was having seizures), and decided to get off Keppra and try my diet since it was suspected that I was hypoglycemic. Needless to say it's been 6 years, I have learned to manage and lower the amount of seizures, but decided to look into it again since I was still have clusters of episodes each month.

Currently I have seen a great neurologist who seems very qualified and listens to me, but he has perscribed a medication Oxcarbenzepine that has a similar aromatic structure to lamictal. I would love to find a wonder pill but cannot risk putting my body through another hypersensitive reaction with liver hepititus. I have been looking into the research but cannot find enough to determine if it's a better decision to continue to live without medication (i.e. what's the prognosis and am I causing myself brain damage with each seizure), or to take a risk on a medication that in four weeks could cause a severe reaction that could land me in the hospital for weeks or kill me? Has anyone who has had this reaction found a drug that works? I can live with the partial complex siezures, what I cannot live with is causing myself brain damage, or take a drug that will damage my liver.

Thank you!

Katy

Comments

mad/keto type diet and/or

Submitted by Anonymous on Tue, 2014-09-23 - 01:59

mad/keto type diet and/or surgery are also options to explore.

Welcome Katy I have read

Submitted by just_joe on Wed, 2014-09-24 - 12:20

Welcome Katy I have read several things and the longer you delay medications and procedures the stronger the seizures will get. It will also take longer to get medications set at dosages that can help control your seizures. And yes it can cause issues with your brain. As for damage to your liver wellllllllllllll a lot of things including medications (even some over the counter meds) can cause liver damage. You posted "hen Keppra which did not touch the seizures" you did not post how long you wer on it or the dosages you wer taking. It doesw take some time to get dosages set because each persons body is different. It took 3-4 adjustments while taking keppra for us to find the dosage level to reduce the number of seizures I was having. At the time I started taking it I was having 4-6 seizures a week. By raising the dosage levels and checking back with doc after 1-2 months those same seizures were reduced to 2 seizures a week. Then down to 1 a week. Now we have coupled the keppra with vimpat and I have a seizure about every 8-14 days. So yes it does take time. All those changes anf there were about 6 keppra dosage changes took about 2 years. I am talking of keppra because it does not go thru the liver. So check with your neurologist and discuss the liver issue with him. Also understand a medication that works for one person may not work for the next. WHen I started having seizures I was put on dilantin and the second day I went bonkers lost my equalibrium. I was taken off it and was put back on it a few weeks later at a lower dosage. I had no problems with it for 35 years. Then I started having the same issue as I did when I was first put on it. I had a toxic reaction when the dosage was too high and 35 years later I had gotten toxic on it so I do know what some medications can do Do discuss this issue with your neurologist. If yo uthink he is great as you posted by all mean keep a good relationship with him and many of your questions can be answered with a phone call rather then a visit.. I have been with the same group of neuroogists since 1970. Doc joined them in tha late 80's and answered some of my questions back then and in his early years. I went several years without having to have a visit to his office because of the calls. Many of the increases of my keppra were done over the phone. I hope this helps and you do get things set and get seizure free. Joe

Welcome Katy I have read several things and the longer you delay medications and procedures the stronger the seizures will get. It will also take longer to get medications set at dosages that can help control your seizures. And yes it can cause issues with your brain. As for damage to your liver wellllllllllllll a lot of things including medications (even some over the counter meds) can cause liver damage.  You posted  "hen Keppra which did not touch the seizures" you did not post how long you wer on it or the dosages you wer taking. It doesw take some time to get dosages set because each persons body is different. It took 3-4 adjustments while taking keppra for us to find the dosage level to reduce the number of seizures I was having. At the time I started taking it I was having 4-6 seizures a week. By raising the dosage levels and checking back with doc after 1-2 months those same seizures were reduced to 2 seizures a week. Then down to 1 a week. Now we have coupled the keppra with vimpat and I have a seizure about every 8-14 days. So yes it does take time. All those changes anf there were about 6 keppra dosage changes took about 2 years. I am talking of keppra because it does not go thru the liver. So check with your neurologist and discuss the liver issue with him. Also understand a medication that works for one person may not work for the next. WHen I started having seizures I was put on dilantin and the second day I went bonkers lost my equalibrium. I was taken off it and was put back on it a few weeks later at a lower dosage. I had no problems with it for 35 years. Then I started having the same issue as I did when I was first put on it. I had a toxic reaction when the dosage was too high and 35 years later I had gotten toxic on it so I do know what some medications can do Do discuss this issue with your neurologist. If yo uthink he is great as you posted by all mean keep a good relationship with him and many of your questions can be answered with a phone call rather then a visit.. I have been with the same group of neuroogists since 1970. Doc joined them in tha late 80's and answered some of my questions back then and in his early years. I went several years without having to have a visit to his office because of the calls.  Many of the increases of my keppra were done over the phone. I hope this helps and you do get things set and get seizure free. Joe         

Welcome Katy I have read several things and the longer you delay medications and procedures the stronger the seizures will get. It will also take longer to get medications set at dosages that can help control your seizures. And yes it can cause issues with your brain. As for damage to your liver wellllllllllllll a lot of things including medications (even some over the counter meds) can cause liver damage. You posted "hen Keppra which did not touch the seizures" you did not post how long you wer on it or the dosages you wer taking. It doesw take some time to get dosages set because each persons body is different. It took 3-4 adjustments while taking keppra for us to find the dosage level to reduce the number of seizures I was having. At the time I started taking it I was having 4-6 seizures a week. By raising the dosage levels and checking back with doc after 1-2 months those same seizures were reduced to 2 seizures a week. Then down to 1 a week. Now we have coupled the keppra with vimpat and I have a seizure about every 8-14 days. So yes it does take time. All those changes anf there were about 6 keppra dosage changes took about 2 years. I am talking of keppra because it does not go thru the liver. So check with your neurologist and discuss the liver issue with him. Also understand a medication that works for one person may not work for the next. WHen I started having seizures I was put on dilantin and the second day I went bonkers lost my equalibrium. I was taken off it and was put back on it a few weeks later at a lower dosage. I had no problems with it for 35 years. Then I started having the same issue as I did when I was first put on it. I had a toxic reaction when the dosage was too high and 35 years later I had gotten toxic on it so I do know what some medications can do Do discuss this issue with your neurologist. If yo uthink he is great as you posted by all mean keep a good relationship with him and many of your questions can be answered with a phone call rather then a visit.. I have been with the same group of neuroogists since 1970. Doc joined them in tha late 80's and answered some of my questions back then and in his early years. I went several years without having to have a visit to his office because of the calls. Many of the increases of my keppra were done over the phone. I hope this helps and you do get things set and get seizure free. Joe

drugs effect us differently.

Submitted by Anonymous on Thu, 2014-10-30 - 19:17

drugs effect us differently. I took keppra then keppra xr for 7 years. some of the seizures where worse than no meds . some complex partials reduced , still had a average 5 siezures on week one ''the good week. 11 to 18 the next week . as I told my neurologist at least I have a good week