New member looking to gain knowledge and support

[MsJYD]

Hi, my name is Jerry. I did not know much about seizures nor have I ever been around someone having a seizure, until this morning. My boyfriend Will and I have been together nearly a year, I met him in March 2013 and one month later he had a nocturnal seizure due to being very anxious earlier that day. We both deal with panic attacks and anxiety, and they manifest physically for both of us, his manifestations just happen to be in the form of nocturnal seizures. He does not take medication although he has before a few years back, but his seizures only seem to occur every 10-12 months, no more than that. This morning his seizure happened out of nowhere and it was very scary for me to witness... It lasted just about 20 or 30 seconds but it felt much longer. He was jerking his arms and started salivating so much he began choking. I knew to turn him on his side, and I did as fast as I could so he was okay. He was sweating and his head was very hot, he kept clenching his jaw open and shut as well. He immediately fell asleep after this happened, his eyes would open as I called his name but he would not respond so I let him sleep for another 10 or 15 minutes until he fully regained consciousness. He had no idea that he had a seizure. I have never been so scared in my life, I was just as panicked (if not more) as I was after I'd broken my foot in a car accident... I couldn't stop crying and I could get the image of him seizing out of my head I am detailing this to help us both, as I know I will have to help him again in the future and the more I know about this situation and how to help him the better I will be able to handle it. I can't help but to think about what might have happened had I not been there with him, I cannot imagine my life without him in it. If anyone has been in a similar situation or has had nocturnal seizures like Will, I would appreciate any advice or input whatsoever. Thank you for reading.

-J

 

[giveasmile]

I'm sorry that you have to watch someone you love going through this. Just know that if he says he doesn't remember any of it, it's true. Sometimes our seizures are harder on those watching, than it is for us. It's wonderful that you knew to move him to his side.

I've had nocturnal seizures for many years. They went undiagnosed and untreated for a long time and I ended up with many other kinds of seizures, as well. This isn't the same for everyone. Some have less seizures as they age, or stop having them all together. Some change to different kinds or frequencies. Some go away for many years and come back. Everyone is totally different.

It would be wonderful if you can encourage him to see his Neurologist again and to revisit treatment options.

In the meantime there is wonderful information on this website that will help you understand the terminology and situation as a whole. It helped me tremendously when I was first diagnosed. I didn't realize how little I knew about seizures until I got here.

Welcome to the forums and know that you are not alone. There are many people here because of their loved ones.

 

[malibu1966]

Hi Jerry,

Welcome to the forum !!! I am also new here and just in the short time being here I have learned tons of info from past and present posts.
People are eager to share and help when needed.

Glad you were there at the time of the seizure. My wife has been with me for each one. Who knows what a person could do when they are in a full seizure, and not have anyone
close by to help.

Again , welcome..!!!

 

[Fedup]

Jerry

Welcome to C.W.E you will find the service and the people friendly and helpful here. I am glad and sorry you had to witness what happened. We will try and help as much as we can.

 

[MsJYD]

Giveasmile: I think I will have him talk with his neurologist about this. He was just prescribed an SSRI and has only been taking it a few days, he also had 2 glasses of wine the night before the seizure. Those factors paired with a bad sleep schedule seems to be the only causes if there was one at all, I know it scares him that it came out of nowhere. I will certainly take your advice and read the information on this site!

Malibu1996: I'm so glad to hear that your wife has been with you through everything, I plan to be with my boyfriend through it all and do whatever I can to make him feel safe and comforted.

Thank you all for the replies, I do feel very welcomed here and it's a great feeling!

 

[Cint]

He was just prescribed an SSRI and has only been taking it a few days, I know it scares him that it came out of nowhere.

My seizures came out of nowhere 30+ years ago. If he suffers from TLE, he may have be suffering from depression, too, as they do seem to go hand in hand. I also take an SSRI along with several AEDs and have been taking it for over 20 years. Plus, I have two now grown children who've witnessed many types of seizures growing up. They thought their momma was dying on several occasions. But with the right med/treatment, it can get better.

Check this out too for seizure info:
http://www.epilepsy.com/epilepsy/provoke_seizure

 

[MsJYD]

Cint: Will's seizures started just a few years ago, he's about to be 23. He had suffered from depression, more so in the past few years I'm sure. I'd like to think Will could continue taking an SSRI and begin an anti-seizure medication as well but I know he is apprehensive about it... He was told he couldn't drive if he took the medication and his job and driving is important to him. No matter what he chooses to do, I know it will get better. I think he is lucky enough to only be having them once a year, and now that I've been there to help him once I only want to be there for him more and more. I am definitely going to help him keep track of potential triggers, I've seen alcohol listed on a few sites and he did have 2 glasses of wine the night before the seizure, so he's laying off for a while.

 

[Nakamova]

Hi MsJYD, welcome to CWE!

Taking an anti-seizure medication + anti-depressant shouldn't prevent your boyfriend from driving. If anything, it's a reason why he'd be even safer behind the wheel. Even if his seizures are rare and nocturnal, there is a risk that they could change, especially if they are untreated. So it would be great to have him tough base with the neuro, even if only to get advice on the anti-depressant he might take. The SSRIs present an intermediate in risk of increasing seizure susceptibility, so they are not necessarily ideal.

Best,
Nakamova

 

[nelly]

MsJYD
Hi Welcom to CWE. Im sorry to hear that you had to witness that. It's scary. You did the right thing by turning him to his side.
I have Right Temproal Epilepsy, I take meds and I drive. If I wasn't on my meds I probably wouldn't be able to drive. Maybe you could go to the neruologist with him for support.

wish you and Will the best!!

 

[Belinda5000]

Hello Jerry,
Welcome to the board and CWE.
I know from what people have told me it can be a scary thing to watch when you see someone have a seizure.
If your boyfriend just having nocturnal sz's there is know reason he can't drive but alcohol I wouldn't recommend for him.

He should see his neuro and take his medicine and stress is a big factor for sz's.

 

[malibu1966]

Hi Jerry,
I am also new to the forum. The seizures that I have already experienced, I don't think driving is a good idea. You can relate it to the people that say Ive only had a few drinks at the bar and say " I'm fine to drive home". Then end up in a car accident due to poor judgement. Possibly only hurting themselves or killing someone.

My opinion is if Will can get alternative transportation this would be much better. Will's neroligist would be the best one to make that decision for him if he should or should not drive. Depending on how bad his seizures are.

Here in Canada I need to be seizure free for 3 months before I can drive again !!!

I left my full time job last June and am at home full time now. The comute to work would end up getting me only five hours sleep a day maybe less. Due to that I live out of town and transit buses only run at certain times.

Which really sucks. But I have my wife to drive me around when I need to go anywere in town.

It's a jugement call that when anyone gets behind the whell of an automobile. You have to take full responsibility for your actions.

Again just my opinion.
Doug

 

[N Sperlo]

Hey Jerry

You did the same thing my wife did. That is awesome. Even though you were scared and crying, you got your boyfriend on his side and you were there fro him the whole time.
My wife has only seen me have two tonic clonic seizures, but the second time, there were not tears. She knew I would come to and she actually walked me around the house to make sure I was comfortable.
She still gets emotional if she sees any seizures because it brings back the memories of being scared.
I think you are well prepared for whatever happens, but CWE is a great support system when needed.

Welcome.

 

[MsJYD]

I mis-wrote earlier, I meant to say that if he couldn't drive if he had a seizure. NC laws require him being seizure free for 6-12 months, although he may be an exception since his are nocturnal. I can't blame him for being worried about his license being revoked though! I told him not to be so worried about that, especially if he begins taking an anti-seizure medication again.
I talked with him about my concerns last night, I am thankful to everyone that has posted as you've helped me gather my thoughts about everything! He has a doctor's appointment coming up soon, I know things will only get better from here.

Doug: I appreciate your opinion, you are lucky to have a supportive wife and I would do the same for Will. If it wasn't safe for him to drive I'd make sure I could help him get to where he needed to be.

N Sperlo: I can see myself being in the same boat as your wife. I have been emotional for days now just trying to come to terms with everything, getting all my thoughts out in the open so it'll be easier for me to let go of how traumatizing this was. I no longer have the image of him in my head so vividly, and when it happens again I know I will be sad but I won't be such a mess like I was this time around. I know now that I have no reason to be panicked, it looked much worse than it actually was.

 

[Nakamova]

I hope things will get easier for you both. Will you be going with him to his doctor's appointment? It can be a big help to have someone there for support, and to keep track of what the doc says. I usually write down a list of questions to bring with me, and I make sure I'm clear on all the answers before the appointment is over.