Advice Needed! Help!

[JessZ]

Hello,
My husband has been diagnosed with epilepsy for the last 14 years.
He had his first seizure when he was 16, so in 1999. He had a total of three tonic clonic seizures while sleeping. He was put on Tegratol. His seizures were 100% controled until 2009 when he had a pretty bad tonic clonic seizure after work one evening. He hadn't been taking his medication like he was supposed to and he was not getting enough sleep (we had just had a baby). His doctor increased his medication and he's been doing great since then.
Then, in September, we were sitting on the couch. He was on his computer doing homework when he asked me a question. I looked over at him, and his head was turned to the left and his left arm was jerking. It lasted about 45 seconds. I *think* that he lost consciousness. Obviously, I took him to the ER to make sure his levels were normal. His level was at an 8, which is normal. The doctors figured it was from the prolonged computer use. I called our family doctor (he wasn't under the care of the neurologist because they were so controlled) and made an appointment. He immediately referred us to a neurologist, only because this "episode" was different.
We met the neurologist, who is starting from scratch. He had an EEG and an EKG. The EEG was normal, but the EKG showed abnormalities.
Since this, he's had three more episodes like the one in September. No tonic clonic seizures. Once during a tattoo (we figured it was from the pain), one at work, and one while driving (which he shouldn't have been doing!!).
I'll shorten the story - the heart issues don't seem to be the issue. My *guess* is that he needs a new medication. He's been on the same one for 14 years - can you build up a tolerance? And why are these "episodes" so different??
Advice? What should I be asking the doctors??? Help!

 

[qtowngirl]

I *think* that he lost consciousness.

hi jess, curious about this part - what was his answer? between the person seizing and the one watching, it would almost be impossible to not be sure of that. him telling you what it felt like and you explaining to him what you seen is enough to recognize being unconscious.
big difference too- did he fall out of his chair and unresponsive? that's classic to a grand mal seizure. if he 'wasn't with you' but continued sitting there, yet seemed unconscious, that is very similar to a complex partial seizure. consciousness is impaired but actions/movements can still be made. with a complex partial one does not remember the seizure or anything they may have done.

The doctors figured it was from the prolonged computer use.

for some with seizures yes, that is a seizure trigger. it could also be a sub-cause as in tiredness being their trigger, and tired was due to too much time in front of the screen.

We met the neurologist, who is starting from scratch. He had an EEG and an EKG. The EEG was normal, but the EKG showed abnormalities.

starting from scratch is good-that is a good impression from the neuro, they're not all so caring and thorough. normal eeg's are, well, commonly normal in epilepsy, which doesn't mean there isn't seizures and/or an underlying cause. next best test is an mri (magnetic resonance imaging) which can rule out (or show if that's the case) tumors, lesions, damage, scarring, etc. which are all a seizure cause.

My *guess* is that he needs a new medication. He's been on the same one for 14 years - can you build up a tolerance? And why are these "episodes" so different?? Advice? What should I be asking the doctors??? Help!

building up a tolerance is unfortunate but does happen. doseage change or a new med completely are common, and depend on the reason for the change. a lot of neuros will simply add a med to the existing, which isn't a bad way to go unless it has too many side effects or the meds interfere with each other. one of the shitty parts re: epilepsy and meds, at one time or another we've all felt like a guinea pig.
as for episodes (i assume that means his 'new type' of seizure), them changing over the years is also fairly common. this can happen a year apart, or decades, or not happen at all. ie: i had simple partial seizures only for over 9 years, then out of nowhere started having grand mals. found out many years later what the entire seizure 'cause' was but no reason for a new type showing up one day.
re: doctors, ask ANYTHING. all your questions on here, and anything you think of between now and then. it's key for us to be our own researcher and advocate. between us and a good neuro it's likely to be figured out.... just takes patience, hope, and acceptance of the life change.
on that note you came to the best epilepsy site ever... welcome!! i've tried a few out but nothing compares to cwe. and we give lots of hugs

 

[JessZ]

Thank you for your response! We're both just so frustrated. He's upset with himself. He can't drive, he can't be alone. He feels like he's not able to do what he wants. I understand that. I am BEYOND stressed. I am always watching him, does he look okay? What was that movement in his sleep? Was that a seizure? It's never off of my mind. It's something we haven't had to deal with over the last 10+ years we've been together. It's going to take some adjusting.
As for the loss of consciousness, I was here. I do not think he did. I watched it from start to beginning. It was more "violent", I guess than the others he's had recently.
We've been trying to get answers for the last few months, since this started back up. I realize that we may never get answers. Typing that makes me very, very sad.
I would love to rewind time and go back a few months and skip over this.

 

[Nakamova]

Hi JessZ --

I know its tough not knowing exactly what's going on. Epilepsy is just full of unknowns. Your husband's recent seizures could be flukey breakthroughs due to unusual stresses or triggers, or it could be a sign that his metabolism and tolerance to the medication is changing -- or both. The fact that his seizures were responsive to the Tegretol is an excellent sign, and makes it more likely that they will respond to other anti-seizure meds as well. It's most likely a matter of picking another dose or drug to try -- and also making sure your husband is doing what he can to identify and avoid any stressors. This means taking his medication consistently, and making sure he gets enough sleep (fatigue is the #1 seizure trigger). It may also mean taking a close look at any other factors (such as computer use) that could be playing a role.

It's great that you are able to support your husband and help him deal with this rough patch. You're doing the right thing by looking for more information -- I encourage you to keep asking questions -- and I hope you and your husband can take advantage of the support CWE offers as well. Don't forget to take care of yourself. Epilepsy can take a toll on the caregiver/friend/family member too.

Best,
Nakamova