Fiancé with "epilepsy"? ...need advice.

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Hi everyone, I hope I'm posting this in the right place. Everytime I've Googled something pertaining to seizures or epilepsy, I always get directed to these forums. This seems like a tight knit little family who lives with day to day challenges... therefore I thought I'd reach out to all of you. My fiancé Chris is 28 years old.. I'm 23. He's never had a seizure in his life, up until August 9th. (4 weeks ago). He was fine all morning, slugged back a large coffee around 9 am. By 11:30 am, he went to the bathroom and complained of not feeling well. He sat on the edge of the bed and started to have a seizure. Full on body stiffness, his head was all contorted.. it was honestly the most frightening thing I've ever witnessed. I helped him to the ground as he began to slide off the bed and I called 911 frantically. He started to come to once the paramedics showed up, and once in the hospital, had a CT scan & blood test done within the first 45 mins being there. Right after his CT scan, he had another seizure. Coming from a person who's NEVER had one. These were both (what I assume) were Grand Mals. Coming out of his 2nd seizure, he started screaming and thrashing around, almost making the doctors restrain him. After hours in the hospital, and injecting him with Diazapam and Dilantin, they sent him home with me that night, claiming he had "developed" epilepsy and that his blood and CT tests came back clean. He's on 100mg of Dilantin (3 times a day). He had an EEG last Friday, and we are still awaiting results. I want to add the following previous "health" issues. 1) about 3 severe head traumas.. once at 13, one at 19, one at 27. All concussions. He had quit smoking and was on the patch during these seizures.. just started Step 2 of Nicoderm. Also, we have had a fun summer (getting engaged and all) and we were enjoying our summer patio beverages this summer.. maybe a bit too much? I've read that both past traumas and alcohol "withdrawal" can cause seizures. Also, is caffeine a trigger? Could that large coffee he slammed back been a trigger? Why would it happen so onset? Also, given all these circumstances, do you think this is epilepsy or more of a freak thing? We have met with the neurologist once so far and by doing his in office tests and reviewing his file, he doesn't get a gut feeling of epilepsy and more of a one time thing. The problem is, our sleep is so little because of anxiety now. Everytime he feels a bit off (describes déjà via, tingling and "weird" feeling, he thinks he's about to have a seizure and tries to get out of bed to put pants on incase he has one again, I panic, and call 911 and he wakes up in an ambulance again. This is his major fear. I'm already a bit of a hypochondriac myself, and have chronic anxiety.. (he is normally such a laid back and stress free person) and it's hard for me to stay calm for him. It's like a vicious circle. We take over the counter sleeping pills to try and help fall asleep easier, but nights are hit and miss. I've noticed in his beginning stages of sleep, he often twitches his arm. Or jerks. Almost at a 90 degree angle.. about every minute or so, on and off. This isn't every night, but I've noticed it's been more prominent since his seizures. I've read that this is a type of seizure.. is that true? Could his déjà vu feelings actually be partials or do you think it is a mental thing? Another thing (sorry for rambling) is that the Dilantin is causing quite a bit of memory loss or thought process lapse and it drives him nuts. His coordination is a bit off. Are those all normal side effects? Anyway.. could anyone provide insight in regards to what we could be experiencing? What to do to help anxiety? Epilepsy or fluke? Chances of happening again? He lost his license almost immediately and it's affected every aspect of our lives..'it's scary living in fear of why this happened and not knowing what caused it. Not knowing how to prevent it is even scarier. He has given up alcohol and limits his caffeine intake to 2 cups a day. He has not had one since. Thanks in advance... sorry for the long post. But I really do appreciate your Input. Lexi.

Comments

Re: Fiancé with "epilepsy"? ...need advice.

Submitted by Nerak95 on Wed, 2013-09-11 - 16:40

Hi Lexi,

Good for you for wanting to learn more!

It's a shame that people in the ER told you that just because he had a couple of seizures that he has epilepsy. There can be other reasons for the seizures. ER people can help in lifesaving situations but they are not experts when it comes to epilepsy. Glad Chris is under the care of a neuro.

There could be many thing that may have caused the seizures and it may be difficult to understand what the reason may be. These comments are only my opinion but it may be food for thought.

The injuries that Chris had to his head could be the culprit but I would think that if that was the case a CT scan and/or an MRI would reveal this. Certainly something to discuss with the neuro.

Prescribed medications, over the counter medications, supplements, etc, could lower one's seizure threshold. Niccotine patches do indicate that if you experience seizures to contact your physician. So I would look at this as one possible culprit especially if the seizures began after he started the patches. There are other side effects from the patch and whether the patch or the large coffee, or if he had been dehydrated could have attributed to a metabolic condition to cause the seizure is anyone guess. OTC sleeping pills could also lower the seizure threshold. I would try and use Melatonin, if possible. That's a pretty benign supplement and my daughter has no issues. She takes 6mg at night.

The best thing you can do is create a list of questions and concerns that you have, even if they sound ridiculous. Bring these with at his follow up visit to the neuro. If he doesn't quite answer your question or says something you do not understand, ask him again and to explain it in a way that will help you understand.

Quitting smoking isn't a fun time. It can be very stressful. I know. I quit about 40 years ago. With the patch, alcohol, stress, dehydration, who knows.....this all could have attributed to the seizures. Caffeine can be a trigger for some people and with the patch who knows if it could have been just too much stimulation for his system.

I think the twitching you're observing is probably typical nighttime movements. But add this to your list of questions. The weird feelings could be as a result of the Dilantin. It takes some getting used to especially if they have him a full dose and did not titrate it slowly. Dilantin can cause memory problems, too, and sometimes this is just transient. Mention this to the doctor, too.

As for the coffee, if the caffeine did have something to do with the seizure while wearing the patch, maybe he can make sure he drinks a coffee that is lower in caffeine or to drink decaffeinated coffee. I saw a thing where Starbuck's decaffeinated was actually higher than regular brands of caffeinated coffee. Remember....there is lots of caffeine in soda, too.

Make sure he's off the smoking patches. I would tend to side with the neuro about this not being epilepsy.

Karen

Hi Lexi, Good for you for wanting to learn more! It's a shame that people in the ER told you that just because he had a couple of seizures that he has epilepsy.  There can be other reasons for the seizures.   ER people can help in lifesaving situations but they are not experts when it comes to epilepsy.  Glad Chris is under the care of a neuro. There could be many thing that may have caused the seizures and it may be difficult to understand what the reason may be.  These comments are only my opinion but it may be food for thought. The injuries that Chris had to his head could be the culprit but I would think that if that was the case a CT scan and/or an MRI would reveal this.  Certainly something to discuss with the neuro. Prescribed medications, over the counter medications, supplements, etc, could lower one's seizure threshold.  Niccotine patches do indicate that if you experience seizures to contact your physician.  So I would look at this as one possible culprit especially if the seizures began after he started the patches.  There are other side effects from the patch and whether the patch or the large coffee, or if he had been dehydrated could have attributed to a metabolic condition to cause the seizure is anyone guess.  OTC sleeping pills could also lower the seizure threshold.  I would try and use Melatonin, if possible. That's a pretty benign supplement and my daughter has no issues. She takes 6mg at night. The best thing you can do is create a list of questions and concerns that you have, even if they sound ridiculous.  Bring these with at his follow up visit to the neuro.  If he doesn't quite answer your question or says something you do not understand, ask him again and to explain it in a way that will help you understand. Quitting smoking isn't a fun time. It can be very stressful.  I know.  I quit about 40 years ago.  With the patch, alcohol, stress, dehydration, who knows.....this all could have attributed to the seizures.  Caffeine can be a trigger for some people and with the patch who knows if it could have been just too much stimulation for his system.  I think the twitching you're observing is probably typical nighttime movements.  But add this to your list of questions.  The weird feelings could be as a result of the Dilantin. It takes some getting used to especially if they have him a full dose and did not titrate it slowly.  Dilantin can cause memory problems, too, and sometimes this is just transient.  Mention this to the doctor, too. As for the coffee, if the caffeine did have something to do with the seizure while wearing the patch, maybe he can make sure he drinks a coffee that is lower in caffeine or to drink decaffeinated coffee. I saw a thing where Starbuck's decaffeinated was actually higher than regular brands of caffeinated coffee.  Remember....there is lots of caffeine in soda, too. Make sure he's off the smoking patches.  I would tend to side with the neuro about this not being epilepsy.  Karen