How does it feel?

[Shirl]

I just wanted to ask if anyone can tell me how it feels to have a seizure? My son (who is 12) is non-verbal so he cannot tell me. I know at times he is aware of one coming on because his eyes will get huge and he will cry out like he is terrified of something before they happen. I read some of the comments from adults who take the medications and they talk of insomnia and feeling "buzzed" from medications and more than ever I wish my son could tell me. My husband and I have noticed a big difference in him with the changing of his seizure medications and self abuse is now happening with our son (he hits himself in the side of his head and has even blacked his own eye). It breaks my heart to think he suffers alone. I try to soothe him and reassure him until it is over but I have no clue how he must feel and maybe it is different for everyone.

 

[Nakamova]

I only have grand mal seizures, so here's my two cents on those: Because of the loss of consciousness, I have no pain during the seizure, and no memory of what has occurred. Afterwards I tend to feel fatigued and nauseous, and sorek. It's helpful for me to drink water, even if I'm not hungry or thirsty, since dehydration can make the post-seizure dullness last longer.

People react in very individual ways to the different AEDs, and even the same person can have a different reaction depending on the dosage, or how long they've been on the med. Right now, I seem to have found some equilibirum on Lamictal, with tolerable side effects. I hope you and your son can find the right treatment balance too. Let us know what he has been taking and folks here will chime in with their own experiences and suggestions.

 

[hootie]

Shirl--
I am in the same boat as you...my son is 11 and *non-verbal* as well (he can request and label but is not conversational, can not tell me how he feels other than "ouch, leg" when he gets hurt or "ouch, head" if he has a headache).

He has absence seizures and I have found that he gets more aggressive, agitated, irritable (may hit himself or others) when he is having or is about to have a bout of seizures (whether or not I can actually tell if he is having some).

I wish he could tell me how he feels or what might help to soothe him.

My son is taking depakote. It has helped with the seizure activity.
He is getting another 48 hour EEG (at home...thank goodness) in two weeks.

I wonder if your son might need a different medication or a combo of meds. Hopefully you can discuss this with his doctor very soon.

I also have found that certain things trigger my son's seizures...anything with potato, too many carbs. He has multiple food allergies.

 

[Ann T.]

Hello, Shirl! Great question! I have complex partials & many of mine are quick but have A LOT of depth. Basically, the lights are on, but absolutely no one is home. You can hear the crickets chirping. I know when 1 is starting because I'll be happy as a clam, then silence for 15 to 20 seconds. I hear echoing or a ringing in my ears, then I've checked out, but have left the light on. During the 20 seconds, I run around in circles, or I'm the Leader of the Band w/o Dan Fogelberg, or I wander around the grocery aisles. My brain has an affinity for the tp aisle. I chew gum when I actually have no gum. I don't pass out & I don't progress into a tonic clonic seizure. As I've matured, my seizures are changing a tad bit. Also, my longer seizures make me groggy & all I want to do is sleep after 1. Hope this gives you a window into our world. Have you notified your son's M.D. in regard to his hitting himself? And yes, I also hope you, your husband, your son & his M.D. are able to discover a mix of meds or other treatment that will cure the self-abuse. Take care & keep us posted, Shirl.

 

[ColmanMac]

Confusing Worrying Sometimes embarrassing (depending on wot I've done) Painful (depending on wot I've hit!) Relaxing Disorientating - and thankful to have come out of it if it's been a 'biggie' (as in my case that could be my last)
Hope your son's having. "good day"
Col

 

[Shirl]

Thanks to everyone for the feedback. Yes Jon sees many specialist for his behavior, seizures and so on; we have been dealing with the self abuse for about 2 years now. Jon for the longest time did fine with just trilepital and then about the age of 7 he outgrew it and his blood work showed we could not increase it. Jon has been on so many different combinations; some of his medications have included depakote, felbatol, keppra, etc. There have been so many it is hard to remember. He has a chromosome disorder as well as the corpus collosum (the part that communicates between the 2 hemispheres of the brain) is partially missing and then he has cerebral palsy, all from birth. The nuerologist tells us we may never be able to get them under control because the extent of his problems. Of course our prayer is for them to be wrong. I guess everyone is different and medications work differently for everyone. Thank you all for your feedback.

 

[hootie]

Shirl--
I work at an office with a doctor that treats kids with autism...she does not treat the autism, but treats the medical issues that seem to go hand-in-hand with autism (food allergies/intolerances, gi issues, vitamin/mineral imbalances, immune disregulation,etc.). Many kids with SIB are having headaches or gut pain that is coming out as aggression to self (or others).

Does your son only have self abuse related to seizures or is it unrelated? Does he have any digestive issues (constipation, etc)? Does he put pressure on his abdomen frequently? Does the SIB happen after eating certain things (pay attention to his diet, artificial colors and flavors, etc.)? Does he crave certain foods (this might indicate that it is a certain food causing the problem)?

I pray you can figure this out!

 

[dfwtexas]

Right now I am enjoying my longest period of being seizure free...no seizures since Oct 7, 2009! Thank you God!
I have simple partials and complex partials. I am not able to speak...or at least that is my understanding...I usually get the simples as an aura....alerting me that a seizure is about to happen. Although I have had a few simples that never went into complex. My simples are visually...it looks like a dream sequence on TV shows...the edges of my vision go wavy and blurry. If I go into a complex, my eyes will roll into the back of my head...usually the last thing I remember is the ceiling! During my complex, I can walk around, or continue doing whatever I was doing before...but not so well. I don't remember anything from being in a complex.
Everyones seizures can vary greatly...but I think getting replies from the group is helpful in understanding your son's.

 

[valeriedl]

Sometimes when I have a seizure I don't know that I've had one unless there is someone there to tell me that I've had one. I'll smack my lips and droll among other things. I usually don't have grand mals.

Sometimes when I have a seizure I'll be talking to someone and what I think I'm saying isn't what is coming out of my mouth. They will be asking me questions and I think I'm answering them but I'm usually just mumbling or making noises.

I know you said that your son can't speak so he maybe trying to communicate with you but like me what he is "saying" isn't what he is doing.

Afterwards I have a very bad headache that will last for hours.

I've been on several different types of meds. I don't remember which one it was that I was on, but all I did was sleep. I didn't eat or get out of bed. Another med I was on all it did was make me want to eat. I don't remember how much weight I gained but it was alot. The dr swiched my meds around until I started acting normally.

Is he on Keppra? There have been alot of posts on here about having Keprage. I think that I have it. I'll get so angry about things that I just want to hit the wall and put a hole in it. Since he can't tell you what he might be getting angry or upset about, it could be a side effect from keppra if he is on that.

 

[travel bug]

Hi Shirl,

As others have said, everyone’s different, but I just wanted to assure you that, at least with my seizures, no pain is involved. I usually have simple partial motor seizures though my first ever generalized into a tonic clonic. Just before each seizure started, I screamed. In all incidences, I think the screams were what are called “epileptic screams” that are involuntary and part of the seizure itself. I don’t know if that’s what you mean when you say your son calls out before his seizures. The epileptic scream doesn’t indicate pain or necessarily even fear, though I admit that the first few times it happened, I was afraid. But they just come out even when I know what's coming and that I'll be okay.

Like Nakamova, my one tonic clonic didn’t hurt at the time though it left me feeling like I had run a marathon: every muscle ached. My simple partial motor seizures which leave me twisted on the ground like a pretzel, while definitely uncomfortable, are in no way painful.

I can't imagine how difficult it must be for you to see your son deal with epilepsy without knowing what he is actually going through. I just wanted to let you know that, in many cases, if not all, seizures themselves are not painful.

I wish you two all the best.

 

[Endless]

Shirl,

I'm so sorry that your son, and you, are going through all this. It has to be so hard.

I have simple and complex partial seizures. The only time it hurts is when I have a complex partial and do something to injure myself during it, like bump into something really hard or fall on the stairs. The rest of the time no pain is involved. During complex partials no one really knows I'm having one, unless I say or do something goofy. I can look and do things exactly like normal, except I have no memory of it or an altered memory of it. Or, I can say truly outrageous things. If someone doesn't know me they just think I'm nuts. A couple of nights I've come to outside in the pouring rain or the freezing cold, very near the street, with no shoes or coat on. Thank god I had on pajamas. After a CP I'm usually confused for a few minutes, and then I sleep. (except for now, on lamictal, when I can't sleep much at all. Still as exhausted, but can't sleep)

I could imagine someone having a complex partial and hitting the wall or banging their head. Some of the people in here have said that they get violent during partial complex seizures.

Before I have a seizure I sometimes get an aura. For me these are a strange electrical-like feeling plus a feeling of dense forboding. It feels awful, but it isn't painful, either. It can last a few minutes or on and off all day long.

Simple partial seizures - for me they can be smelling something weird, not recognizing where I am or the people I'm with, time and size warping, hallucinations, memory zingers from the past, and a few others. The really hard one is a fear seizure. Fear is an understatement. Someone in here described it as how you'd feel half way down when you jump off a building. But it's just for a few minutes and then I'm just really tired and need to lay down.

About your son's self-harming. Sometimes the meds can do it to you. I really haven't talked about it at all in here, but on the Lamictal I get these intense thoughts and urges to do things that are, well, physically self-destructive. The thought drills into my head and for some time I can't get it out of my head. I've got it well under control, though. I haven't actually done any of it. A few times I've had to walk into another room and remove myself from whatever is included with the urge. The only drug that has done this to me is Lamictal, but I've heard of other drugs doing it to people, too. I think that if this happened to someone without the mental skills and self control to cope, it would get pretty dicey.

I guess the bottom line is don't worry about your son being in pain. He's not. But he may feel confused, scared, or tired. And those things you can help him with.

 

[ColmanMac]

Keep us all posted Shirl & shout if U need N-E-thing

 

[Shirl]

Shirl--
I work at an office with a doctor that treats kids with autism...she does not treat the autism, but treats the medical issues that seem to go hand-in-hand with autism (food allergies/intolerances, gi issues, vitamin/mineral imbalances, immune disregulation,etc.). Many kids with SIB are having headaches or gut pain that is coming out as aggression to self (or others).

Does your son only have self abuse related to seizures or is it unrelated? Does he have any digestive issues (constipation, etc)? Does he put pressure on his abdomen frequently? Does the SIB happen after eating certain things (pay attention to his diet, artificial colors and flavors, etc.)? Does he crave certain foods (this might indicate that it is a certain food causing the problem)?

I pray you can figure this out!

Hootie,
We do know the self abusing behavior is caused from Jon feeling pain. Because of his partial agensis of the corpus collosum he has a very high pain tolerance on his extremeties and they believe a very low pain tolerance on the inside of his body. For instance he doesn't care if he gets and IV and he can bite his own hand until he bleeds but a simple gas pain is extremely painful for him causing him to cry out and hit himself until he passes gas. For over a year they believed the behavior was psychotic and kept treating it as so to no avail with different medications. We went from place to place trying to get someone to listen to us because we believed his was in pain. Finally an MRI showed a mass in his temple muscle. After another 6 months and 2 more MRI they determined he had to have surgery because they did not know what the mass was and it was growing. After they removed his temporalis mucscle they said it was putting so much pressure on his skull that it had left grooves and indentations so it was causing him pain. His self abusive behavior is so much better since his surgery in May of this year. Jon has trouble emptying his stomach and does have lots of stomach pain which is what we are dealing with now. We have to slowly get him off the psych. medications that they had been treating him with because they now believe us that it was pain and not just behavior. It is very hard to have a child that can only communicate through some gestures and facial expressions and I am finding that as his parents we have to be very insistent when we believe something is going on. I feel badly that my son went through so much for so long. They have told us because of the extent of his disabilities that there is no reference book to go by for us son and that he is teaching them.

 

[Shirl]

Shirl,

I'm so sorry that your son, and you, are going through all this. It has to be so hard.

I have simple and complex partial seizures. The only time it hurts is when I have a complex partial and do something to injure myself during it, like bump into something really hard or fall on the stairs. The rest of the time no pain is involved. During complex partials no one really knows I'm having one, unless I say or do something goofy. I can look and do things exactly like normal, except I have no memory of it or an altered memory of it. Or, I can say truly outrageous things. If someone doesn't know me they just think I'm nuts. A couple of nights I've come to outside in the pouring rain or the freezing cold, very near the street, with no shoes or coat on. Thank god I had on pajamas. After a CP I'm usually confused for a few minutes, and then I sleep. (except for now, on lamictal, when I can't sleep much at all. Still as exhausted, but can't sleep)

I could imagine someone having a complex partial and hitting the wall or banging their head. Some of the people in here have said that they get violent during partial complex seizures.

Before I have a seizure I sometimes get an aura. For me these are a strange electrical-like feeling plus a feeling of dense forboding. It feels awful, but it isn't painful, either. It can last a few minutes or on and off all day long.

Simple partial seizures - for me they can be smelling something weird, not recognizing where I am or the people I'm with, time and size warping, hallucinations, memory zingers from the past, and a few others. The really hard one is a fear seizure. Fear is an understatement. Someone in here described it as how you'd feel half way down when you jump off a building. But it's just for a few minutes and then I'm just really tired and need to lay down.

About your son's self-harming. Sometimes the meds can do it to you. I really haven't talked about it at all in here, but on the Lamictal I get these intense thoughts and urges to do things that are, well, physically self-destructive. The thought drills into my head and for some time I can't get it out of my head. I've got it well under control, though. I haven't actually done any of it. A few times I've had to walk into another room and remove myself from whatever is included with the urge. The only drug that has done this to me is Lamictal, but I've heard of other drugs doing it to people, too. I think that if this happened to someone without the mental skills and self control to cope, it would get pretty dicey.

I guess the bottom line is don't worry about your son being in pain. He's not. But he may feel confused, scared, or tired. And those things you can help him with.

Endless,
Thank you for sharing so much of your life with me. The fear seizures is something I had never heard of and am sure my son has had because he looks terrified for a few moments and then goes into a grandmal seizure. We are trying to get our son off of Lamictal now because we separated the drugs to see which one was upsetting his stomach and 30 minutes after taking lamictal he becomes upset and his stomach extends, extreme gas, sometimes vomiting, etc. and because his seizures are not under control anyway we needed to try something us. We are slowly adding Vimpat and then will slowly reduce the lamictal. We pray this is the answer. When my son has seizures, his heart rate goes crazy for a few moments and his oxygen levels plummets for hours so we have to use oxygen. It is amazing to me how different everyone is and yet so similar.

 

[hootie]

Shirl--
I am so sorry your son and family are going through this. Glad that you keep pushing for answers to help your son!

Are the docs trying to address his digestive system issues? Does he take digestive enzymes or probiotics (Rx or OTC)? Something as simple as these can make a world of difference.

 

[SCRobbins]

Durign grand mals there is no pain - or recollection. The primary thing is just keep him from hitting his head, and if he's like me at all do not try and restrain him. Also, as he's coming out of the seizure try not to show the stress you must be feeling... a calm voice and actions make all the difference for me.
I do agree with the muscle pain and headaches. I'm also Very tired. Lots of sleep and a cool cloth on my head seem to make things better.

 

[Shirl]

Shirl--
I am so sorry your son and family are going through this. Glad that you keep pushing for answers to help your son!

Are the docs trying to address his digestive system issues? Does he take digestive enzymes or probiotics (Rx or OTC)? Something as simple as these can make a world of difference.

Jon sees a GI doctor and yes they are trying to address his digestive problems. Unfortunately, they do not feel there is much they can do. No one has mentioned pro-biotics so this is something I will do some research on. Thanks. He actually is taking a small dose of Eryped which is an antibiotic they have found a full dose upsets peoples stomachs but a small dose as Jon takes is suppose to help keep his stomach digesting. Wanted to share with everyone that as Jon gets use to the Vimpat, it seems to be healping him a lot.

 

[hootie]

It would be a great idea to introduce probiotics (good bacteria) because he is on antibiotics (kills bad AND good bacteria). It is best to buy from a store that keeps them in the refrigerator (Whole Foods, Fruitful Yield, other health food stores). Some good brands are Cultrelle, Floragen or Floragen 3...I know there are others but I can not think of them right now. Also, yogurt with *live and active cultures* is another option (if dairy is not an issue). I guess they also have yogurt made with rice or coconut.

You would want to give the probiotic away from the antibiotic by at least two hours.

You may want to ask about digestive enzymes. There are different kinds for different foods (carbs, protein, fats).

Glad to hear that he is doing well on Vimpat!

 

[Endless]

Shirl,

Be sure to ask his neuro what to do when he vomits within 1-2 hours after taking his dose of his medication. It takes between 1-2 hours for the medication to enter the intestines and get into his system. If I'm sick and I throw up my dose in under an hour, my doc has me take another dose. But be sure to check with your son's doc before you do that, okay?

 

[keaze]

Hello Shirley,

I'm not sure which kind of seizure your son has?

I may sound a little crazy in my answer but i am only telling the honest truth.

I had 60 complex partials seizures a day for 6 years. You know...Having seizures is actually not that bad, except for the social aspect (how you get disconnected from the people around you, and how they start viewing you differently because of the weird things you do). How I viewed my seizures, was as some kind of... presence that was there with me. I am absolutely not talking about something spiritual or actually a "presence" in the sense that you think i mean it. Anyways what I'm trying to say is: When you get used to your seizures, they start being somewhat comforting. A complex partial doesnt hurt. It doesn't feel really "bad". It's just a feeling that youre.... going under something. Passing through something. Your body becomes really heavy, and your mind extremely focused on something. And when the seizure is over you actually get a good feeling. Have you ever noticed (assuming your son has complex partials), probably every time your son's seizure is over, he will shift in his seat, and lay back. Why does he do that? Because the end of the seizure makes him feel at ease.

Bottom line is, the seizure is not such a bad thing.

If he has grand mal, then that's a totally different thing..

As far as the medication goes... well the side effects are nasty. You lose your memory, you live in a clouded world. If I had less episodes when not on meds, maybe say... 5 a day, I would definitely get off my medication. I'd much rather deal with them.

So it depends. I'm not saying you should take my advice, but if i had known what life with meds was, and how life with light seizures was, I'd have chosen the latter. A lot of people do, actually.