Newbie/Hello

[Blonde Angel]

Hello

I am a Mum from Australia with identical twin boys aged 8 yrs & an 11 year old daughter who has Epilepsy & Autsim..she is non verbal.

My question is can people with epilepsy feel yuck in the hours before a seizure? What do they feel exactly? I do believe my daughter feels terrible in the hours before a seizure as she gets quite distressed & agitated. The challenge for me is that she is non-verbal & I have to try & read her behaviours.. not always easy.. Its frustrating for me to see her in discomfort as she already has a raw deal with the Autism..

Another query..
Does puberty really set off the seizure?
Does menstruation aggravate seizure activity?

My daughter has had seizures since she was 6yrs old but I have found its gets worse in Winter time & the puberty onset.

Its hard enough living with the challenges of Autism but I actually find the unpredictable Epilepsy really a downer in quality of life.

 

[Belinda5000]

HelloBlonde Angel welcome to CWE

Before a seizure you may not feel anything and it may just hit.It's possible for her seizures to be brought on by her being agitated.
Puberty can make seizures worse I know because the change in the female body.
I've had epilepsy 50 years and with some people it can make seizures worse at that time of the month.Having epilepsy not controlled and the side effects of the meds is a downer I've had my epilepsy controlled since I was 2 yrs old.

 

[Ruth]

Hi Blonde Angel,

Welcome to CWE. This forum was made by Bernard out of love for his wife Stacy. That love permeates throughout the whole forum.

Puberty can set off a seizure, it doesn't always. Everyone is different.
My menstrual cycle was a trigger for my seizures. It isn't for everyone. For instance, my sister did not have seizures from age 16-about 50. Some people with epilepsy, go into remission. There is always the posiblity that she can quit having seizures.

Have you thought about taking her to a specialist in speech and having her learn sign language? That would be a good idea. Ask her doctor about it.

Sometimes, I feel awful before a seizure. What kind of seizures does she have? What medication is she on?

 

[Blonde Angel]

Hi Ruth
My daughter has a communication device that is her "voice" but it has been challenging to get her motivated to express her feelings, we are trying to teach her "happy, sad & point areas where its "sore". She makaton signs "more" thats all.

Its been a tough road with medications so many side effects, She is currently on Keppra..so we shall see how it goes. Tegretol caused so much weight gain. She does get mood swings, so I think its a process of trialling & see how it works.
I do hope she outgrows it, as she has enough challenges in her life.

I really believe that she must get migraines because she puts her hands to her head in frustration.
That is why I am keen to get feedback on how people feel ..so I can learn to understand how she may experience ,whilst realizing that all peoples experiences are different....

 

[masterjen]

Before the current medication I am on, I would get extreme tingling all over my body including in my head, starting as long as 12 hours before a seizure (my seizures are nocturnal). At times I would feel like it was driving me crazy, and I would feel edgy and agitated. Sometimes in the evenings I would feel edgy and agitated without the tingling; I would just think I was in a bad mood until the next morning when I realized I'd had a seizure in the night.

 

[Blonde Angel]

I do get frustrated with those Drs ..since I have to be the advocate for a child that can't speak & be her voice. We see a paediatric neurologist, got fed up with one as he didn't let in the full info on side effects..as I had a child that was going quite nuts with confusion& just not right. She would wake up in distress..

So, now I'm reading the Keppra rage stuff, wow it gets crazy with these meds doesn't it..lol I suppose it's trial & error what's works for some ..may not work for another?

At least a lot of you can express yourselves in how you feel, there's some kids out there who don't have that luxury.... It's not like they can tell you exactly all their side effects.

So, do some people feel crappy pre seizure? Is there warnings with this aura..I would appreciate some more feedback in how people feel pre seizure.

 

[MAB]

Hi Ruth
My daughter has a communication device that is her "voice" but it has been challenging to get her motivated to express her feelings, we are trying to teach her "happy, sad & point areas where its "sore". She makaton signs "more" thats all.

Its been a tough road with medications so many side effects, She is currently on Keppra..so we shall see how it goes. Tegretol caused so much weight gain. She does get mood swings, so I think its a process of trialling & see how it works.
I do hope she outgrows it, as she has enough challenges in her life.

I really believe that she must get migraines because she puts her hands to her head in frustration.
That is why I am keen to get feedback on how people feel ..so I can learn to understand how she may experience ,whilst realizing that all peoples experiences are different....

I have simple partials and I don't notice any different feelings until they start.

Has she been more agitated since starting the Keppra? I'm on lamictial and I have noticed since starting it that my moods are much more stable. Mine started after menopause so the hormone thing doesn't affect me but I have read that it does cause problems for other people.

My 4 year old grandson also has autism and is non-verbal. I know how hard it is when they can't communicate what they are feeling. He doesn't have seizures but has terrible bowel issues and other problems.

 

[Cint]

Hi BlondeAngel,

My seizures started when I was 23 years old. They started as SP and then I had my first big TC during menstruation. The seizures, for me, were always much worse at that time. There is a connection, they're called catamenial seizures.

http://www.epilepsy.com/node/2000666
Why do I have seizures more often around the time of my menstrual period?
Changes in seizure frequency in relation to the menstrual cycle is called "catamenial epilepsy."
In some women, seizures occur most frequently just before menstruation or during the first few days of menstruation starts. This is thought to be due to the fast drop in progesterone that occurs before menstruation. Some of these women may find that taking natural progesterone may help seizure control.
Other women have seizures most frequently in the middle of their cycle, at the time of ovulation. This may be due to the rapid increase in estrogen that stimulates ovulation at this time.
Some women have more seizures during the entire second half of their menstrual cycle, from mid-cycle to the onset of menstrual bleeding. This pattern usually is seen in women who may not ovulate and they don't have enough progesterone being produced. It's also possible that the amount of certain seizure medications in the blood stream may decrease before menstruation.

Epilepsy can also cause mood disorders and makes one very anxious. Some of the meds can bring on migraines, too, and mood disorders. I take Keppra now, but I'm not experiencing the "rage" like so many others have.

My auras depend on what my seizures are like. When I had TCs, I would have this strange feeling like watching a movie and things start moving in s-l-o-w motion, voices suddenly get louder and it was like people were yelling at me. I was paranoid by then....that's the last thing I would remember. Then when I come to, I wouldn't be able to speak for quite a while. When I have CPs, I start to feel this strange feeling like someone is whispering somewhere, but there is no one there. But if someone really is there and speaking, I cannot understand a word that is said, nor can I speak. If I do, it is gibberish. I have this blank look on my face. Recently I was told that the other couple thought they had made me angry because I wasn't answering them, but I wasn't understanding a word they were saying. It only lasts a minute or two. But it takes about 10 minutes before I can speak again. Most of the time, my seizures just appear out of no where, morning, noon or night. The aura is the warning for me.

 

[valeriedl]

Hello and it's nice to meet you!

I was diagnosed with epilepsy 11 years ago when I was 26. To this day they still don't know what triggered my first seizure. I was taking Depo-Provera birth control, the shot, so I wasn't having a period. I don't know if it was close to the next time for me to get my shot or not so I don't know if that may have had anything to do with it either. So I really can't give you any advice on puberty but there are many people on here who can.

Stress is one thing that is almost guaranteed to bring on a seizure for me. I can imagine that she is under a good bit of stress dealing with everything that she is. Does she seem to have seizures after you work with her learning words? I can't even imagine how stressful that is. It's usually heat that might bring on seizures but I know there are many people who have them brought on by cold.

Sometimes a while, maybe an hour or so, before a seizure I may start feeling weird. My lips may tingle or I have trouble concentrating. I know exactly everything that I'm doing. My husband says I get a 'look'. He says that my eyes get sort of glassy. These things are sort of hard to describe if you don't have epilepsy.

Sometimes before a seizure I may have an aura which is usually called a simple partial seizure. During these I don't black out I'm just really confused about things that I'm doing and may not be doing them right. I know what I'm saying but it may not be the same words that are coming out of my mouth. These generally last 10 minutes at the longest.

After some I will go into a complex partial which is a seizure that I completely black out during and don't know anything that is going on or that I'm doing. I may go right into the complex and have no warning of any kind before hand. After these seizures it's very normal for me to have a migraine that will last for hours.

I very rarely have a tonic clonic, ones that you shake during, but I go right into them when I do. I also have migraines after these too.

It took a good while to figure out what the right meds and dosages should be for me. As you said it's very frustrating. Just because it works wonderful for someone doesn't mean it's going to work for you right off the start or at all. Even if the med is working you may need to figure out what the right dosage of that med is. With the meds I'm on I'm still having seizures but not as many or as bad.

I know you'll get a lot of help on here.

 

[Blonde Angel]

Hi MAB
We have only just started the Keppra for the last few weeks..my daughter since May..when the combination of Tegretol & Clonidine prescribed was making her turn fruit loopy. We initially did not know what was causing these nocturnal "terrors" she would wake from being asleep & get not focussed, head bang & get distressed.

As you may know, people with Autism have anxiety isssues anyway, so was on Clonidine as an anti-anxiety.

By the end of June we had enough & the paediatric neuro was on a 4month break!, so I was quite adamant to STOP everything which effectively got the medical people to hasten us in getting an urgent appointment to review her meds.

My daughter has the complex partial type seizures, with the occasional big ones.

I really believe that the Tegretol especially has caused weight gain which in turn caused her to have early puberty at the age of only 10yrs 3months. It also interferred with the Pill & mini Pill which caused breakthrough bleeds & impacted on swimming which she enjoys.
So, I hate Tegretol with a vengeance blah!...

As you are aware, theres many issues with Autism & each kid is different. Aloe Vera gel juice is supposed to be quite soothing for Irritable Bowel .. the journey of Autism is challenging but I can only say this..never give up on those you love despite the battles we all face.

 

[Blonde Angel]

Wow
You certainly had some yuck experiences, so I can only try imagine what it would be like for my daughter. As I mentioned before, I believe the Tegretol & Clonidine caused some nocturnal hallucinations because when we called my Daughters name she looked quite "lost". When she is alert she will give us eye contact when we called her name.

So I do know that the side effects really outweighed the benefits.

How did you feel post seizure?
Does it depend on the seizure type?

 

[Blonde Angel]

Another Question

For those who have experienced the "Keppra Rage" ..what are your experiences? what do you feel?

How do some of you cope with the indignity of having a seizure in a public place? I ask this because I recall 2yrs ago my Daughter had a seizure while in transit at the Airport in Dubai... its a horrid experience... Some peoples reactions were not pleasant.

 

[Topcat]

Hi and welcome. I guess I'm used to having seizures in public. I just get up and keep on going.

 

[valeriedl]

With keprage it doesn't take much to set me off. If I get irritated I just want to yell at people no matter who it is, and I have several times. Many people deal with it in different ways.

I've had several seizures in public and for me I'm not embarrassed when I do. I realize that it's something that's going to happen and I can't stop it. In a way it's kind of like when there are people over that I don't know that well and I have a seizure in front of them. They may know that I have epilepsy but they don't know what it's like to see me have a seizure.

Most of the seizures that I've had in public are complex partials. I may pull stuff off of shelves in the store. Most of the time I just sit down and don't want to move, I'm completely unresponsive during those. People have tried to help in some sort of way but they don't understand that I'm having a seizure. They don't realize that there's nothing that can be done until I come out of the seizure.

I had a tonic clonic in public once and people just walked by and watched me shake on the ground not doing a thing.

In either experience I don't think I've ever had anyone run screaming from me. I just get looked at like I'm a goof.

 

[Blonde Angel]

Top Cat & Valeriedl..

So I guess you just have to deal with it & not worry what others think..especially those who don"t know you.

I suppose you would never see these people again ..so why worry the trivial.

Still think its important that all people should learn basic first aid & not be ignorant.

I shall retain my sense of humor.

I shall just have to see how this Keppra goes....

I am aiming to keep her on the Pill & let her have a bleed every 3 months the swimming gives her much pleasure & I don't want this ruined for her sake.

I just hate this unpredictability & this feeling of no control when my daughter has seizures, its not pleasant to see a kid that can't talk suffer.. its something I have to deal with & accept .. what can I say? a rant...

I HATE EPILEPSY!!!!

blah.

there.
I
feel
better
now.

 

[MAB]

Hi MAB
We have only just started the Keppra for the last few weeks..my daughter since May..when the combination of Tegretol & Clonidine prescribed was making her turn fruit loopy. We initially did not know what was causing these nocturnal "terrors" she would wake from being asleep & get not focussed, head bang & get distressed.

As you may know, people with Autism have anxiety isssues anyway, so was on Clonidine as an anti-anxiety.

By the end of June we had enough & the paediatric neuro was on a 4month break!, so I was quite adamant to STOP everything which effectively got the medical people to hasten us in getting an urgent appointment to review her meds.

My daughter has the complex partial type seizures, with the occasional big ones.

I really believe that the Tegretol especially has caused weight gain which in turn caused her to have early puberty at the age of only 10yrs 3months. It also interferred with the Pill & mini Pill which caused breakthrough bleeds & impacted on swimming which she enjoys.
So, I hate Tegretol with a vengeance blah!...

As you are aware, theres many issues with Autism & each kid is different. Aloe Vera gel juice is supposed to be quite soothing for Irritable Bowel .. the journey of Autism is challenging but I can only say this..never give up on those you love despite the battles we all face.

Thank you Blonde Angel, I actually where a necklace everyday that says Never Give Up.

Have they ever suggested Lamictial. It is well known as a mood stabilizer and works well for my partials. I think I started it in November. I have lost 30 pounds since starting on it. I don't know if the weight loss is due to lamictial or the fact that I now feel better so I have gone back to the gym

The neuro mentioned putting me on Clonidine to help me sleep but my blood pressure is already on the low side so we are still thinking about it My grandson takes it to help him sleep.

 

[Nakamova]

Hi Blonde Angel --

Just wanted to add my welcome to the others! You've gotten a lot of good advice and feedback above. Feel free to start a new thread with a specific question, or search the archives..

BTW, if your daughter's seizures are sensitive to fluctuations in estrogen, you might look at trying her on an "anti-estrogenic diet" -- one that avoids foods with estrogen and promotes foods that keep estrogen levels in check. http://www.livestrong.com/article/70189-estrogenic-foods-avoid/ lists foods to avoid, and http://pharmacistben.com/nutrition/top-ten-foods-for-protection-from-estrogen/ describes foods that are helpful.

Best,
Nakamova

 

[Blonde Angel]

MAB
Yes, the next step is Lamictial if Keppra makes her quality of life worse..but no I am willing to give Keppra a go. There's been no sleeping issues..we had a child with no drama sleeping to a child with sleeping dramas with the Tegretol & Clonidine.

I use Melatonin to assist sleep settling, it doesn't aim to bomb out my daughter, it's a natural hormone that we all have to use for sleeping.

About Autism.. .& yes it include the Epilepsy issues I see myself as an advocate for my child
, I have to go out & fight for my child. You have to look through their eyes & imagine what they're going through. Your Grandson is only 4 there's early intervention & therapy that may assist. We have the IPad & a communication device called the "Vantage Lite" it's not cheap @$9000.00 but we have used it since 2013 & she is making very slow progress.

If our Grandson ends up not being verbal, he's going to need the communication support to let you know what he wants & needs via signs, & an augmentive device with the support of speech therapy.

With any challenge.. Such as Epilepsy, Autism whatever..
It's
.dignity
.hope
.opportunity and yes
.love

Nothing beats it.

Thanks to all.

 

[lindsayschu2]

My seizures began during puberty, came out of remission during pregnancy, and are much worse during my period. So for me, hormonal changes play a huge role. This is certainly not true for everyone but definitely true for some.

 

[joyous]

In my experience that emotions can play a part in them. High levels of stress, agitation, even depression can be causes. I have to watch my diet<I'd eat sugar, gluten, too many carbs and not enough protein&fat> and sleep patterns<not enough sleep would cause them for me>. It's also been my experience that fear of having one would play a big role. Fear of when the next one will hit. Not being in control is a cross people with epilepsy have to carry.