Question about husband's seizures

[Hil]

Hi all,

My husband has had two tonic clonic seizures in the past six weeks. He had another tonic clonic seizure two years ago.

I'm looking for any information on how to handle postictal confusion. When the seizing is finished, he is in a state of altered consciousness. He cannot speak and almost seems to be sleepwalking. He won't lie down. Instead, he wanders unsteadily around our bedroom and eventually tries to walk downstairs. This is dangerous as he's far from steady on his feet at that point.

I called the paramedics during the first two seizures. It took several brawny guys to restrain him to get him to the ambulance.

I did not call the paramedics during this last seizure. Instead, I tried to keep him in our bedroom until he came out of it. He ended up pushing me when I stood in front of the door to prevent him walking out. My main concern is to keep him safe and prevent him from going into the kids room and waking them up while in this altered state. (they are four and one) Another goal would be to keep myself safe as well.

I'd love any advice or anecdotes anyone has on this topic. I really need some advice.

Thank you.

Hil

[huskymom]

Welcome Hil.....

I know there is someone here who will be able to help you. Keep strong!

[Nakamova]

Hi Hil --

That's a tough one. The post-ictal period can be a bit like sleepwalking for some. Your husband is lucky to have you there to keep an eye on him. Is he on any medication? It might be worth checking in with his neurologist to see about adjusting his dose.

Best,
Nakamova

[Cint]

Hil,

Like Nakamova said, this is a tough one. Since your husband seems to be big and strong, you may need to call 911 when he has a tonic clonic, just for your own safety, since he probably won't remember pushing you or any of that. Talk with your husband and his neurologist about this issue.
There have been a number of times people in my life have said I've pushed, slapped, etc., them while in the post-ictal state, but of course, I don't remember any of it.

[Hil]

Thanks, guys. He is on Lyrica and clonopin. The actual diagnosis of epilepsy is all rather new. They are in the process of adjusting his dose now and it appears that he's not yet at the proper levels. It also seems that he's not tolerating Lyrica well. It's too sedating. So, he wants to try something new, but maybe as he's having more frequent tonic clonic seizures we should wait until he's stabilized.

We're actually in the process of switching neurologists, as we're feeling that our current MD isn't as responsive or communicative as we need. I have high hopes for the new MD. We're seeing him tomorrow and hopefully we'll get a plan regarding medication that makes sense.

Regarding the violence, it's true. My husband doesn't remember any of it. He's not a violent person at all, so it's upsetting for both of us. I hear you about calling the paramedics. I need to get over my feeling of not bothering them. Safety first as they say.

Thanks for the insight!

[Rae1889]

i may be wrong, but I thought that Klonopin was the drowsy med. its similar to a muscle relaxant. Clonazepam. or meant to be used along side a anti-epileptic drug.

and that Lyrica was either a pain med for fibromalaygia or meant to be joined with another anti-epileptic drug. Lyrica

So both are very very weak anti-epileptic drugs. and that usually monotherapy *using one drug* is the first sought treatment.

here is a tip. Research side effects and write down all your questions.Start a seizure diary. Meetz has a very good list if you would like I can get her to post it for us.

[Cint]

From http://www.epilepsy.com/EPILEPSY/SEIZURE_MEDICINES

Clonazepam is the generic name (non-brand name) of the seizure medicine Klonopin used in the United States, Canada, the UK and some other countries. In Canada and the UK, the brand name Rivotril is used for clonazepam. In India, the brand name is Epitril.

Lyrica (LEER-ih-kah) is the brand name used in the United States and some other countries for the seizure medicine pregabalin (pree-GABA-lin).

Lyrica is similar in structure to one of the major chemical neurotransmitters in the human brain, GABA (gamma aminobutyric acid). GABA is the most important inhibitory neurotransmitter—that is, it prevents nerve cells in the brain from firing too quickly, as they do in seizures. As it turns out, however, Lyrica does not act like GABA in the brain.

[SeizetheNight]

Hello,

First, I am sorry to hear about your husbands epilepsy. I am also a husband, about 6' 200lbs, with epilepsy. My wife is about 5'10, 110lbs, and we have 2 kids (2 and 5). I have only had a few t/c seizures, but I think the postictal is one of the scarier parts. I am told I get up and walk around, talk to people, once I even managed to unlock my phone while waiting for an ambulance. One of the times I had a t/c was early in the morning, while still in bed. My wife ended up locking the bedroom door so that I couldn't leave, as I guess I was trying to do. That seemed to work. Maybe if you put a child lock on your bedroom door, that could help to keep him in, and also make it easier for you to keep your distance if you need to.

SeizeTheNight

[ddr1166]

Hi Hil - I'm in the same boat. Husband (he's 45 yrs. old) has had three seizures (first was tonic clonic, last two same but much less severe). He's on Keppra XR 2000 mg/day. The first time he was in bed, and it lasted around 8-10 minutes, so I called the paramedics. The last two times I've just timed it and if it lasts longer than 5 minutes (they didn't), then I would be calling the ambulance.

Agree that the period after is a little scary. The last one he had, he was in the rider's side of the car, and I barely had time to pull over into a bank parking lot. It was about 100 degrees outside, so I didn't want to turn off the a/c, BUT he started grabbing the gear shift, rear view mirror, and at one point opened the car door and started to walk around the parking lot! I was afraid we'd drive right through the front door of the bank or that we'd die of the heat (wasn't sure which was worse during the incident).

Anyway - he doesn't remember any of this. A good tip (for the car), put the emergency break on IMMEDIATELY once you're stopped while he's seizing and/or waking up. We sat in the car a good 30 - 40 minutes before we left because the postical period is long, and he gets disoriented and a little scared.

I talk to him throughout the seizure, make sure his breathing is ok, too. I just say "you're fine - just relax - everything's fine - we're in the car - I'm with you hunny - you're doing great - it's Tuesday - we're at the bank in the car" - that kind of thing.

Afterwards, he's just very tired and disoriented. Also, anything he does or says for the rest of the day he doesn't remember the following day. Even if we have coherent conversations.

At home, I roll him on his side and mildly restrain his arms and legs so he doesn't hurt himself (his head being the most important, of course) and say - "you're fine - you had a seizure - just lay down and relax - everything's fine" and that seems to work and he's not as combative.

Good luck and keep us posted.

[matchu]

Hi Hil - I'm in the same boat. Husband (he's 45 yrs. old) has had three seizures (first was tonic clonic, last two same but much less severe). He's on Keppra XR 2000 mg/day. The first time he was in bed, and it lasted around 8-10 minutes, so I called the paramedics. The last two times I've just timed it and if it lasts longer than 5 minutes (they didn't), then I would be calling the ambulance.

Agree that the period after is a little scary. The last one he had, he was in the rider's side of the car, and I barely had time to pull over into a bank parking lot. It was about 100 degrees outside, so I didn't want to turn off the a/c, BUT he started grabbing the gear shift, rear view mirror, and at one point opened the car door and started to walk around the parking lot! I was afraid we'd drive right through the front door of the bank or that we'd die of the heat (wasn't sure which was worse during the incident).

Anyway - he doesn't remember any of this. A good tip (for the car), put the emergency break on IMMEDIATELY once you're stopped while he's seizing and/or waking up. We sat in the car a good 30 - 40 minutes before we left because the postical period is long, and he gets disoriented and a little scared.

I talk to him throughout the seizure, make sure his breathing is ok, too. I just say "you're fine - just relax - everything's fine - we're in the car - I'm with you hunny - you're doing great - it's Tuesday - we're at the bank in the car" - that kind of thing.

Afterwards, he's just very tired and disoriented. Also, anything he does or says for the rest of the day he doesn't remember the following day. Even if we have coherent conversations.

At home, I roll him on his side and mildly restrain his arms and legs so he doesn't hurt himself (his head being the most important, of course) and say - "you're fine - you had a seizure - just lay down and relax - everything's fine" and that seems to work and he's not as combative.

Good luck and keep us posted.

I have had them driving.. I just want to say how special it would be to have someone there telling me it would be all right after my seizures. it is very confusing coming out of them with all the people gathering around. God bless you

[Meetz1064]

In truth, it is my understanding that while Lyrica IS used for fibromyalgia, it DOES and HAS been the source of seizures before. Klonopin/Clonazepam is a benzodiazepam (I can't spell today, sorry) that is used for an anti-epileptic drug, anxiety and other uses. I am using it for myoclonic E. But at a very low dose. Benzos of any type CAN be very addictive.

Rae mentioned the journal............and I am a firm advocate of that. I'm going to put in the things that I suggest (and many others) that you put in it...although you can adapt it as you see fit.

*******************************************

1. Sleep. List how much & when.

2. Eating. List how much, when & what. It's possible to have seizures caused by allergies to food.

3. TV/computer/video games. Yup, they can affect you if you're photosensitive, so list when, what, and HOW LONG.

4. Menses (for women). Start tracking your cycles. CATAMENIAL epilepsy does exist, sometimes it's tied to ovulation, sometimes its right at the TOM. Also, LADIES, DO get a thorough check of ALL your hormones done—female, thyroid, and any others. Believe it or not, they do factor in on seizures.

5. Stress List when it occurred, and what happened.

6. Exercise List what you did, when, and any reactions.

7. Seizures/auras. If you have either, DOCUMENT THEM. Auras--note what they're like--do you smell or taste something that others don't? Hear something? Seizures--how long, when, where, what happened. If you don't KNOW what happened, get eyewitness accounts when possible and DOCUMENT THEM. ****side note**** Auras ARE partial seizures!!!

8. Smoking and alcohol. Ditch them--both are neurotoxins for our brains.

9. Meds (of ANY kind). List the dosages, and when taken.


REPLIES TO THE ABOVE STATEMENTS


1. You MUST get 7 to 7.5 hours of sleep as a MINIMUM, no ifs, ands or buts about it.

2. Eating--one of the other mods, Skillefer, (we call her Skilly), promotes eating 6 small meals a day, using a dessert plate, filling it with a carb and a protein. Good idea, I think. However, some people, like me are allergic to certain foods. You might want to look into various diets. Ketogenic, Modified Atkins, Low Glycemix Index, Gluten Free Casein Free (see www.dogtorj.com where the actual given name is GARD—it stands for Gut Absorption Recovery Diet).

3. Look into a glare screen for your computer or blue tinted polarized GLASSES (available by prescription from eye doctor). These can help cut down on seizures that are caused by photosensitive epilepsy.

4. GUYS--you may not have a cycle, but you DO have hormones. DO get your doc to do a full hormone screen, check thyroid, etc, just to make sure.

5. Use things like yoga, music, walking, whatever it is that you do to bust out your stress. Keep a separate journal to write in so that you can write out your feelings in--and keep it for your eyes only. Write it out by hand, two or three pages at a time. It helps A LOT. DO IT EVERY DAY.

6. REFLEX E can be caused by exercise, so DO track what you do. Keep in mind that you SHOULD NOT swim, bike, hike or bungee jump by yourself. Same goes for mountain climbing.

7, 8 & 9. 'Nuff said.

OK, the journal IS a pain in the arse. No doubt about that one. BUT it DOES help the doctors track things down.


****Some people do note that they actually seize while moving their bowels****

Once you start using this journal, whether it be in a notebook, calendar or on the computer, you can show the results to the doctor---and possibly find the triggers for the seizures. Finding the triggers means hopefully controlling them.......

If you have any questions, please feel free to ask. That's what we're here for.

And welcome to CWE, by the way. I don't think I've welcomed you yet.

Take care!

Meetz

[knothing]

My wife seems to do pretty good when I have one. I drift in and out of consciousness and every time I come back she uses a calm voice and tells me I had a seizure and that I need to stay down. I fight and fight to get up but somehow listen. The only physical advantage she has is that I for the most part am unable to stand. It does not stop me from trying but I have to maintain alert long enough for her to allow it. If it wasn't for me being so physically worn down after a seizure she would have a hard time.
I really don't know how she does it but she does. All she tells me is she does everything to keep me calm and keep me down. She does know when I return to consciousness fully because I then get really angry that I had another one and ask for water to drink.

She did say to keep herself on track she says a catchy phrase to herself. Keep (mentally) strong and keep him calm.

You are not alone and there is always this place to help......... and welcome to CWE.

[Endless]

Hello, Hil,

Welcome to the forum!

I don't have tonic clonic's, but do have Complex partials where I wander around and/or talk, completely unconcious. I live alone so this is pretty unsettling for me. It would be very dangerous for me to be outside during a seizure, especially if I wander into the street. My complex partial's are pretty much gone now, but just in case, keeping myself inside is a priority.

On my front door I have the type of lock where you need a key to open it on both sides. I keep the key in a drawer inside next to the door. I think it's unlikely that I could find the key and open it during a seizure.

Somehow stairs haven't been an issue for me during a seizure. At least I don't think so. But a few times afterwards I've found huge, extremely deep bruises or a cuts. I have no idea where I got them.