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My Husband was doing great until...

Thu, 03/22/2018 - 08:56
My husband has had epilepsy since he was 8 years old. He's now 24, and generally his seizures had been very under control. He had maybe 1 every 6 months-a year, with the exception of when he transitioned from an overnight occupation to a new one. His seizures were usually the result of not being compliant with his medication, or when he was extremely stressed about something. December of last year we were in a nasty car accident that caused him have back to back seizures. The ambulance administered Vercet to help his body calm down, added on Keppra to his Lamictal since he had been getting very small episodes and sent him home. The next day, more than 12 hours after the accident, he starts again with the back to back seizures and has 3 in the time span of about 30 minutes. Me being concerned that he may have possibly injured himself and he was screaming and grabbing his head in pain(not a normal aura for him) I call the nursing line and they dispatch EMS right away. Once he was admitted to the hospital, they decided to take him off his lamictal and keep him solely on Keppra, resulting in him having 12 seizures in a few hours. Once his mom got to the hospital she gave me the film list of medicines that he had tried and failed, Keppra being one of them. Once the nurse finally came back in and I told her and asked when he is getting the lamictal since he is overdue she tells me that they administered enough Keppra to cover what he should get from the lamictal. Now, I'm not a nurse. I do, however, work in a pharmacy and I know that taking more than prescribed of one medication does not mean you can stop another. Never the less, I decide to trust that the nurse knows what she is doing. The next 24 hours became a cycle of seizures coming in groups of 3, ranging from 2-5+ minutes each, and lots of Ativan administration. He was so out of it they transferred him to the ICU and finally take him off the Keppra. Instead of lamictal though, they start the Depakote/Valporic Acid. We thought it was working, he managed to sleep for a full 8 hours without a seizure. Then the cycle started over again. At this point the neurologist fe decides to do the EEG, and we successfully captured a round of seizures fairly quickly. That's when they told us they weren't epilepsy related, they were psychogenic convulsions. We were shocked because they exhibited all his regular signs of his seizures. They finally put him back on the lamictal, kept the depakote, told him he needed to see a psychiatrist and let him go home. Ever since then, he went through more of these pseudo-seizures daily until he finally stopped taking the depakote. His body couldn't handle that constant tremors and vomiting. He was doing better, 1-2 episodes every other day. He went to see a psychiatrist who put him on Prozac, but it ended up being the same situation as the depakote. His neurologist instructed him to discontinue both. Once he stopped both he went weeks without anything. He almost went a whole month seizure free. Then the small episodes started happening once or twice a week. No big deal; they were small and manageable. Then he started having real seizures once every other week. Went back to the neurologist, he scheduled a long term study for April and upped him Lamictal. Worked for a good few weeks, now we are back at real seizures daily. After 2 days of trying to contact the neurologist, he finally makes the decision to add Vimpat, but the pharmacies are round us were out of stock so we had to order it and it should be in today. He did however have 2 seizures back to back last night. Has anyone experienced this? If so, any recommendations to try to control these? My husband feels more like a burden than anything else, no matter what I say. Please, any help is appreciated.

Comments

Unless the hospital he was at

Submitted by Amy Jo on Thu, 2018-03-22 - 16:39
Unless the hospital he was at was a really great hospital with an epilepsy center, I would take anything they told him with a sack of salt. Definitely a problem stopping lamotrigine cold turkey as that really will cause seizures for many people, do not do that unless there is something worse going on (DRESS/SJS/whatever).  Keep an info page up to date on his history so if you need to supply what has worked, not worked or his history again, you can get to it in a jiffy (I keep files on my phone/cloud or in my email where I can read it asap).His neurologist sounds like they know him best. If you consult a different doc, talk to an epileptologist.

Like Amy Jo posted unless the

Submitted by just_joe on Thu, 2018-03-22 - 18:09
Like Amy Jo posted unless the hospital has a epilepsy center I wouldn't listen to them much. Epilepsy centers that are good generally have an epileptologist (neurologist that specializes in epilepsy)associated with them. Do keep notes on all the seizures he has and the times if possible. If he is on meds he needs to be taking them at the same time daily. If 2 times a day those times should be as close to 12 hours apart as possible. Call the neurologist  you have an appointment with and talk about those back to back seizures since lorazepam is being prescribed as a rescue medication to stop back to back seizures aka clustering seizures. They too know more about pseudo-seizures. The known name is PNES (psychogenic non epileptic seizures) The epileptologists and the main people in PNES have been working together to find ways to diagnose both ailments better.I hope this helps and he gets his seizures under controlJoe 

That's honestly exactly how I

Submitted by PaulineSuarez on Thu, 2018-03-22 - 22:39
That's honestly exactly how I feel. Having the pharmacy background, I questioned a lot and the nurses were not happy with me.  I do now carry with me at all times a complete list of medications he is currently taking/has been on. Thank you so much for replying.

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