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dansmom3

Do seizures cause pain?

Topic: 

Hi
I am the mother of a 5 1/2 year old who is progressively getting worse. His name is Danny. He has many types of seizures. He has at least 10 notable seizures a day and probably many more. he often requires interventions such as oxygen, suctioning, extra clonopin or diastat. he is on several medications clonopin, keppra, felbatol, phenobarb, and vigabitrin and several others for gi issues. Danny has tried all the other meds to no avail. We recently were told that there are only options left are to do a surgery that splits the 2 hemispheres or to do nothing. We feel this child is in pain and requires more sedation to be comfortable. The neurologist says that seizures are not painful. Danny is currently functioning at a 0-3 month level. He did progress when he was a baby. He did sit, stand and smile all of that is now gone. I am wondering do seizures cause pain? I think they do.

Comments

Re: Do seizures cause pain?

Hi im new to this blog as I just found out a month ago I have been having sleep seizures. My question regarding the pain is I have a bad back issue and my wife has been telling me I have a seizure ever 1-5 mins for almost 2 hours a night (almost ever night) my doctor does not belive me but all day long my in so much pain that i can barely walk. Can anyone give me some advice.

Re: Do seizures cause pain?

I was wondering what your son's seizures were caused from?

Re: Do seizures cause pain?

If I have had night-time seizures (they don't always wake me up) I know because I usually wake up the next morning with a whopping headache, even after what should technically be plenty of sleep Also, depending on how intense the "tensing" or tonic phase was, sometimes certain muscles feel on the verge of cramping up for awhile, and I can be aware of an electrical sensation in my legs (not really painful, but annoying). I also have times where I feel "on the verge" of a seizure (I guess that's the medication taking over?) - again which isn't painful but in addition to being annoying it can make me feel "off" mentally and physically.

Re: Do seizures cause pain?

To Danny's Mom,

I am so sorry you have to agonize about whether Danny is having pain. I think the best thing is to rely on an experienced epileptologist who would know if he is awake/aware during the seizure and possibly be able to know what area the seizures are coming from in the brain.  Seizures that start in a certain part of the brain can cause painful seizures, but not all of the areas. Also, if he is unconsious as in a generalized seizure he will not feel pain.

I have had seizures for over 30 yrs from a parietal brain tumor and I can tell you that most of my seizures are painful. I am now on a high dose of Keppra and the pain is much less as the severity of seizure has lessened. But before that the pain was horrific maybe because the seizure involved large muscle groups tightening around the leg or in the abdominal area or foot while I stayed aware the entire time, or maybe because the seizure focus was near the sensory strip in the brain. 

Like the person who thought nobody has pain with seizures because they didn't experience them, I thought every one had pain when they had a seizure until I read that it was rare. My pain starts and stops with the seizure. Every one has a different experience because the brain has different functions in different areas.

If he does have pain sometimes giving sedation past a certain point can be dangerous because it can slow the heart down too much.  The doctor has to know what they are doing as far as meds and doses. The epileptologist should be able to guide how much of an increase in the anti epileptic medicine can be given to lessen the seizures.

Please keep the doctor informed of your feelings though because you will likely pick up important pieces of info to pass along.

May God bless you.

Re: Do seizures cause pain?

Danny's mom,

I do hope you are able to see this post.

I am very sorry about your son. I am18 years old and i have epilepsy. When I was in highschool I hurt my neck playing football, and soon after began having seizures.

Since I lived a healthy life before the seizures started, I can give you the before and after perspective you are looking for.

Although I cannot speak for all epileptics, I can say that I have the grand mals. The seizures are NOT painful.

What causes pain is the convulsions of the muscles. It is like doing a moderate strength workout. you feel fatigued and sore. Also, pain can come from whatever you bang up against while having a seizure.

If anything at all, the worst part of seizures, and I mean the WORST part, is knowing your about to lose complete control of yourself. It is the ultimate anxiety.

Since your son is having them so often and at a young age, I'm sure that he will most likely have it rough.

The longer he keeps having them the more damage is going to be done. Sometimes there is nothing you can do, I just hope you find something that works.

Re: Do seizures cause pain?

I have been having night seizures already 8 years and I believe You that they cause pain because tt does cause to me. Doctors are stupid - thats what I learnt in my life. They wouldnt even believe that I can rememeber my name with such brain activity- that does show that epilepsy is underresearched!!! when i took medicine - it was killing me totally. now when i am not on medicine, my seizures instead of being every day is only every 3 months and i got my life back. I would totally suggest trying gluten free milk free diet and stay away from coke, coffee and eat max 50 carbs per day. try GARD diet. look how your organism reacts to everything you eat and do. you are the best doctor for yourself. good luck.

Re: Do seizures cause pain?

Go get your back checked out. Chiropractor might help.

Re: Do seizures cause pain?

Dear Dannys Mom,
I wish that I had some wonderful words of wisdom to share with you or some magical thing to give you to make all your questions and fears go away. I want you to know that I can feel your pain and sadness as that parent of a special child myself I can so very much understand what you are feeling (or at least I think I can) Know that you have support here and if ther is anything I can do or if you just want some one to talk to or talk at please do not hesitate to let me know. I am sending lots of good thoughts your way and a BIG ((((HUG))) to your precious little angel.
Pam

Hi.. As one who has had

Hi..

As one who has had seizures since I was younger than your son (and my boys are now 2O & 23 years old) I can promise you that the seizures are NOT painful.

Sadly, some feel physical pain after seizures (if they had bitten their tongue, for example) .. but during the seizure itself there is NO pain.
I had neurosurgery 5 months ago and the surgeon made the comment that my brain didn't need anesthetic as the brain does not directly feel pain..it registers pain from other parts of the body.

I found this online..
"A tonic-clonic seizure may appear dramatic and frightening to an observer. It is important to remember that the person affected normally feels no pain during the seizure, and they will probably have no memory of it afterwards."
sourc: http://www.epilepsywestlothian.co.uk/factsheets/first_aid_for_seizures.htm

hope that helps
~sol

Re: Do seizures cause pain?

Yes there are some people who do have pain when seizures occur.
There is someone in my group has said they have pain when having she has a seizure.

take care
Lisa
http://health.groups.yahoo.com/group/epilepsyapproach/

Hi Lisa, Here is a page you

Hi Lisa,

Here is a page you might want to look at:
http://www.epilepsy.com/101/ep101_symptom.html

You will note that pain is NOT listed as a symptom of a seizure.
It happens post-icatally...if one is hurt during a seizure.

Here is another site..same conclusion
http://www.northshorelij.com/body.cfm?id=5487&plinkID=85

I've had seizures for 49 years and have never had any pain during a seizure. Just because a person 'thinks' epilepsy causes them pain does not make the concept literally valid.

~sol

Re: Do seizures cause pain?

First of all it is very RARE for people to have pain. But it does happen. There is sometimes abdomnial pain in some.

Here are some sites you can check out.
http://www.cpsp.edu.pk/jcpsp/ARCHIEVE/Jun2004/page366.asp
http://www.medicinenet.com/seizures_symptoms_and_types/page2.htm

take care
Lisa
http://health.groups.yahoo.com/group/epilepsyapproach/

Re: Re: Do seizures cause pain?

Hi...

I've checked out both your sites as I'm more than happy to learn, but you haven't given me any information.

The first sight, on the 'rare' abdominal epilepsy was from 'Pakistan'
which is more than likely behind the USA and Canada in its knowledge.

"Abdominal epilepsy (AE) is a rather uncommon clinical entity in children that might create diagnostic confusion especially when it lacks the typical manifestations of an epileptic seizure."

This lady is also talking about known 'brain' seizure types..not abdominal epilepsy.

Your second site took me to info on simple and complex partial seizures.
It is not 'part of' either type of those seizure and pain is not felt during the seizure itself, nor by the brain during an operation.

The brain is the receptor of pain from other parts of the body.
(The neurosurgeon that did 'my' complex partial operation explained that)

~sol

Re: Re: Re: Do seizures cause pain?

First of all she doesnt say where she thinks the pain is coming from, I believe she is not sure. For looking at a seizure can make you think that way.

I do know someone who does have pain during a seizure.

But there is abdomnial pain but is very rare!

You and I know that there is no pain for most of us who have a seizure.

Lisa
http://health.groups.yahoo.com/group/epilepsyapproach/

Re: Do seizures cause pain?

WELL I'M STILL LEARNING ABOUT MY SEIZURES AND I HAD A SEIZURE AND I DID FEEL PAIN IN MY FACE IT WAS VERY PAINFUL I WAS REALLY SCARE. I WILL TELL THE DOCTOR WHEN I SEE HIM ON THE 19TH.

Re: Do seizures cause pain?

Jana, can we compare notes? I have painful seizures as well.

Hi Lisa, "You and I know

Hi Lisa,

"You and I know that there is no pain for most of us who have a seizure."
THANKS!! :)
(I am trying to help this lady be confident in the words of her physician)

Jana,
What type of epilepsy do you have?
Here is a page you might want to look at:
http://www.epilepsy.com/101/ep101_symptom.html

You will note that pain is NOT listed as a symptom of a seizure.
It happens post-icatally...if one is hurt during a seizure.

~sol

Re: Hi Lisa, "You and I know

SOL,
I dont want to be rude.
But if someone is saying they have a symptom, then I believe them, no matter what they say the symptoms should be.

I love my doctor dearly, but they also go by the book. I have somethings that has happened to me, that the my doctor could not imagine that it could help or had such a negative effect on me.
My doctor is now more open minded.
SOmetimes the doctors can learn from us too.

EVERYONE IS DIFFERENT!

Lisa
http://health.groups.yahoo.com/group/epilepsyapproach/

Hi Lisa, You aren't

Hi Lisa,

You aren't rude!
I'm glad we met.
I'm also planning to ask my neuro about some of the great help vitamins can bring, ty to you.

(I also agree regular neurologists need far more education... at least the ones I saw sure did as none ever got me controlled)

I learned a lot when controlled but still having yearly appoinments with my epileptologist. And if you check, you will see that most of the contributors to epilepsy.com aren't mere neurologists, but epileptologists (ie. neurologists that further specialized in epilepsy.)
And there is a HUGE difference!

Sometimes, when we are new to something, we are overwhelmend and unable to see clearly.
I merely gave Jana a piece from the site, made by epieptologists, to help her sort out the order of things.

(I sure wish someone had done something like that for me, so my gesture wasn't intended as 'demeaning'.)

As you said: "You and I know that there is no pain for most of us who have a seizure."

~sol

Re: Hi Lisa, You aren't

This has all been very interesting. It has made me really stop and think about seizures -vs- pain. It really is a deep subject, one I never really stop to consider beforehand.

Upon really thinking about it, it's not the actual seizure in most respects that are painful, but the result of the seizure. When I have the severe myoclonics and my head snaps back, it wasn't the seizure that was painful but the result of the seizure. The same is true for drop seizures. I can't remember the seizure, but dropping on my butt full force isn't good, again the result of the seizure. T/C's, the same. Shame we don't have wings or a bouncy butt lined with blubber. We could fly or bounce around instead of suffering the results.

The silent seizures are weird but not painful.

I had always associated the pain with the seizure before now, not separating them at all. But it would be the same if you compared them to tripping or slipping. If I slipped and landed on my tail, I wouldn't say the slip was painful, I would say I slipped and hurt myself. I would separate the two making them the action and result. Same with tripping.

The one I can't separate is the abdominal seizure. The whole time the seizure is occuring, it feels like my intestines, colin and whatever else is down there is being manually ripped, torn and twisted from where it is suppose to be. The pain is horrifying and lasts the entire length of the seizure. Unlike the other seizures I have to where I feel the pain after the seizure as a result of the seizure, this one happens with the seizure and the pain stops once the seizure is over. It is totally different from the others. There may be other seizures that fit in this catagory, I don't know. But the abdominal seizure is a seizure from hell and in a class unto itself.

I want to thank you both for getting me to really stop and think about the this though. I feel it is perfectly natural to associate the pain or injury with the seizure since it is the result of it, but it is also very important for the parents of epileptics to know the actual seizure itself isn't what is painful. Aggravating, sometimes scary even, but aside from the abdominal, the seizure itself isn't.It's the results that can be. Take care and stay safe! ;)

-Spiz

Re: Re: Hi Lisa, You aren't

Spiz,

Is that happening before a seizure? Do you think it like an aura?

My daughter has tics. Is it like a muscle tic in your abdominal area? For then after the fact, is it still painful? For a muscle tic would do that. I know my daughter had those tics and painful as hell when she was younger.

Oh that sounds terrible.
Well glad we could be helpful to you

take care
Lisa
http://health.groups.yahoo.com/group/epilepsyapproach

Re: Re: Re: Hi Lisa, You aren't

Lisa,
It's not an aura or a tic, believe me. It is an abdominable seizure, which by the way are very hard to determine as being one. I was sent to every specialist in all fields covering all the way up to my liver to rule out it being anything else. Only then was the neuro-surgeon comfortable with determining it as an abdominable seizure.

The pain stops as soon as the seizure stops. I don't feel any pain afterwards but am really stressed when it happens that it will happen again. The seizure seldom hits once when I have them. It's like having the severe myoclonics, move a muscle and wham! I try to be very still for at least five minutes afterward one. And then it can still happen. The pain during one is unbelievable.

The first I read of them as being rare was on this thread. My neuro never mentioned that. My feelings on them is that they are often misdiagnosed as being something else especially being there isn't alot known or understood about them. Also, the symptoms are so close to other types of disorders. My understanding is they are hard to diagnose and with my experience with doctors...I'm perfectly willing to believe it is still a guessing game until they devise a test that can accurately say it is definitely a type of seizure or I can will one to happen on cue at the right time. Until then...it's an abdominal seizure.

I'm back to not liking my brain.

-Spiz

Re: Hi Lisa, You aren't

Sol
You have to bring the problem up to your doctor. I always found a different doctor, if I felt they were not helping me or could not find answers.

You need to find out what the problem is no matter how the much the doctor believes different.

FOr not all the doctors will believe in vitamins/omega, Neurofeedback....

We have to do what you believe is right for you.

take care
Lisa
http://health.groups.yahoo.com/group/epilepsyapproach/

Re: Sol "You have to bring

Re:
Sol

"You have to bring the problem up to your doctor. I always found a different doctor, if I felt they were not helping me or could not find answers."

Gee, thank you so much for the information.
I have only had epilepsy far longer than you (49 years) and have already seen far more specialists as I'm nore than aware of your 'advice'.
Please don't talk down to me..I'm NOT your inferrior!

~sol

Re: Re: Sol "You have to bring

This is a support group not a battle field. We are
both her to support each other and others.

To compare and compete against each other about
epilepsy is just too ridiculous.
I am just trying to place the facts that I know and
learned and give web sites to back that up.

Please dont treat me like you did in this segment again!
Lisa

Hi all. Following in on the

Hi all.

Following in on the back of the posts so far on this topic. I know that it is possible to experience pain when having a seizure, and so now does my neuro. I have been telling him long enough I still hate these annoying headaches. Finally he is listening when I say the head pain I experience is real. Once I find out what my neuro thinks after he looks at my latest MRI, I will rest better.  The docs in this small community may know how to run an MRI machine but they sure don't know how to read them. I was right to keep on keeping on telling him. Sometimes the patient does know best, especially when they do their homework between visits.

Simple partial seizures. These seizures cause different symptoms depending on the part of the brain involved. A person might make erratic movements, or have sudden, intense emotions -- like anger or fear. A person may also have strange perceptual problems, such as distorted vision or hearing. Other symptoms can include pain or nausea. People with simple partial seizures won't lose consciousness, but they may be confused or unable to speak until the seizure is over.

http://www.webmd.com/content/article/77/95373.htm

Emotions
A sudden feeling of fear or a sense that something terrible is about to happen may be caused by a seizure in the part of the brain that controls those emotions.

http://www.trileptal.com/info/understanding/simple-partial-seizures.jsp

"Many false prophets are gone out into the world." 1 John 4:1

Re: Hi all. Following in on the

Happy Cat,

You know this topic reminds of the experience I had when growing up(about 30 years ago) and dealing with seizures around the menstrual cycle.
I would tell the doctor that I was having them and they would insist that it had nothing to do with it. Now how is this possible, when your body is changing during this whole cyle. I would get so mad at the doctor about it.

If something is going on with a patient and it is not in what they learned, it is going to be hard to convience a doctor that it is happening. Until they keep seeing this happening all the time with patients.

I do believe if a patient says it is happening, THEN IT IS HAPPENING AND HELP THEM.

I personally dont experience pain with seizures, but I know others that have experiienced it.

thanks for sharing that, and I'm glad your doctor is listening to their patient.

Big thumbs up to that doc
Lisa
http://health.groups.yahoo.com/group/epilepsyapproach/

Re: Re: Hi all. Following in on the

Angel.

What can I say? Listening to what is said should be an important part of the relationship, and the doctor you talked to should have listened. Sadly that was not the case. It happens, it happened to you, it might have to other women who have yet to speak. If anything your experience( which I thank you for sharing.) tells us one thing. That is, at times people are to busy to listen, or think they don't have to as they know it all.

It has been my own experience, especially were women are concerned, the menstrual cycle has a lot to do with it, I have found...Catamenial epilepsy only seems to have been taken more seriously the past 4 years or so. Before that women were left floundering in the dark looking for answers. Researchers globally are now realising the effects hormones can have on women- and across all age groups it seems.

For me, the patient is the one that knows best what is happening to them. No 2 people are alike, that has to remembered also. What 1 person experiences, another might not. There is more than 1 way of looking at things. The sooner that is realized the better. I want to be quite clear on that. As I do, that sometimes it pays to look outside the box, and look at other options. The patient to my way of thinking is the one who is telling their doctor-or whoever what is happening. Just because that person might not have come across that, does not mean it is not real. It can be very real, and documented. By being so a picture is given that clearly gives a proper representation of what has been said. One that no MRI film, or testing in the world can compare with.

"Many false prophets are gone out into the world." 1 John 4:1

Re: Re: Re: Hi all. Following in on the

Happy Cat

That is so true!
And I have experienced so many things that are noon the internet, in the books....
My doctor always laugh now, for she know, if it happens to me, it can happen to anyway. ANd that has happened many times to me!
My doctor is now very OPEN MINDED! If she wasnt, I sure would be in trouble!

take care
lisa
http://health.groups.yahoo.com/group/epilepsyapproach/

Re: Re: Re: Re: Hi all. Following in on the

Hi Angel.

My husband Larry and I took Mom to have an echo of her heart and to see the heart doctor.  She got a good report not great but good.  Very good. He heard me out. Then we took her to eat and then on to her regular doctor to have her blood work done and while there I asked a favor of them.  I asked them if they could fit Mom in for him to take a peek at the foot which was swollen some and really bruised.   She told me she had some problems with her motorized chair and that she lost control of it and ran into the front of the sofa, hurting her foot.  I was convinced she had broken it.

 Anyway, he looked at it and sent her for an x-ray and then back to his office.  And just as I had thought.  She had broken it in two places.  There was not much that could be done except to put on a boot cast or wear a good fitting shoe.  Anyway, mind I am not blaming her but mind you no bones got broken when I was taking care of Mom.  I do blame Mom for not letting them take her to the ER when she saw her regular doctor. She is a stubborn one.  And if they had called me, I would have went down (with a driver) a told her she was going.  She needs that stability.

 I talked with Mom's neighbor this evening and she told me that Mom acted more like herself tonight than she has in weeks.  I was glad to hear that.  I tried to call her twice but did not get an answer so I called her neighbor who said that Mom had told her that she was going to bed.  So she must have been asleep.  I will try again tomorrow.  My niece in North Carolina says that LeRoy my nephew called her today. Leroy thought that I had not been to see my doctor as much as I should, nor had I called since I had left there.  I had, and with an open mind when I did. So I was happy to correct that and tell him that fact. As I was I had spoken to Mom everyday and that Larry and I had spent the day with her taking her to the doctors.  So that made me feel good to know that got straightened out, and the doctor listened to my request with an open mind also.

   Right now I''m very tired from that long day and trying to help out my nephew (the one taking cancer treatments) by letting his two children spend the night tonight and the day tomorrow with my kids.  They are sweet kids but very much a handful.  Still it is all that I can do to help out right now, but with an open mind.

Hang in there, and take care.

Cat.

"Many false prophets are gone out into the world." 1 John 4:1

Re: Re: Re: Re: Re: Hi all. Following in on the

Cat
Glad your mom is doing well.
And yes kids can be a handful. SO you better get your rest and make sure you take care of yourself too.

take care
Lisa
http://health.groups.yahoo.com/group/epilepsyapproach/

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