New to epilepsy and in a state of shock

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leensa
New Member


Date Joined Nov 2005
Total Posts : 8
   Posted 11/14/2005 1:05 PM (GMT -7)   
 My daughter has been diagnosed with juvenile myoclonic epilepsy after 4 seizures since Aug this year. She is 16. Each episode occured in the morning soon after waking and all seizures took place in the bathroom. Three have been whilst she was in the shower... very scary! After 2 hospital admissions we were told by a consultant that she was having simple faints and that next time we were to lift her legs above her head and try not to panic!!!
 Luckily we were referred to a neurologist "just in case", and he diagnosed her without hesitation having listened to her, to us and by asking the right questions. She had been having regular morning twitches and shakes for quite a while but had thought they were due to tiredness/ lack of sleep.
She has recently started to take Lamotrigine and is slowly increasing the dose each fortnight. Does anyone here suffer from this type of epilepsy which seems to present in the morning or when one is overtired? I am worried about lack of information, side effects of medication and just how to cope. Help!

Daisy9980
Veteran Member


Date Joined Sep 2004
Total Posts : 775
   Posted 11/14/2005 1:19 PM (GMT -7)   
Hi and welcome. The morning and night time is a big one for alot of us. Alot of neurological changes occur during the sleep/wake period. Being tired can be a very big trigger for her. I am glad you have a good neuro asking the right questions. Please keep us updated on how her drug therapy works out. I would definately suggest some kind of monitor in the bathroom (even though she is older) so if anything happens again, you can respond quickly.
Take care, Tracy
 25 years old
Nursing Student


leensa
New Member


Date Joined Nov 2005
Total Posts : 8
   Posted 11/14/2005 4:31 PM (GMT -7)   
Thanks to both Daisy and Jennifer for your posts. They are both reassuring and informative. I will certainly pursue the idea of an alarm or monitor in the bathroom. The link about Lamotrigine was very informative... thankyou. Gill

goodwitch46
Regular Member


Date Joined Feb 2005
Total Posts : 241
   Posted 11/15/2005 11:13 PM (GMT -7)   

Hi Gill-

Welcome to HW.  I am taking Lamictal and Zonigran for complex partial seizures.  I can tell you that either one or both of my medications are causing imbalance, numbness in my legs and feet, dizzyness and headaches.  I suspect the Lamictal may be the culprit for the headache and imbalance. 

As your daughter is just starting up the medication, try keeping a calender to mark the dosages/times/any side effects each day.  Even now, after nearly 25 years, I STILL keep a calender. 

 I agree with fatigue/sleepiness being a trigger.  I think hunger is too.

Hang In There.          HUGs,  Glenda :-)


complex partial seizures since 22
lamictal 200mg 2x/d
zonegran 150mg 3/d


leensa
New Member


Date Joined Nov 2005
Total Posts : 8
   Posted 11/17/2005 11:24 AM (GMT -7)   
Thanks for that Glenda..... my daughter Kate is due to increase her dose of Lamotrigine today to 25mg in the morning and 25mg at night. I know this sounds a low dose, but she has just started , so I guess that problems could start in this early phase and I need to keep aclose watch. I will keep a calendar as you have suggested. Thanks for the advice! Gill.

BURLSTER
New Member


Date Joined Nov 2005
Total Posts : 7
   Posted 11/19/2005 6:31 PM (GMT -7)   
sorry to but in on this one, but i was reading and i noticed that someone mentioned that sleep is a big factor in epilepsy. Was diagnosed with petite mal anout 12 years ago, and then 6 years later had my one and only grand mal seizure. I take 800mg of epilim a day, and touch wood i now lead a normal lifew. However, every now and again, when i dsont sleep well or get really tired, I wake up and i get these strange twiches in my head. They will get worse and worse until eventually i cant focus on anything up close. This can last all day, but seems to be cured generally by going back to sleep. The doc's ive seen havent really heard of anything liek this so woudl be interested to hear if anyone has any advice.

Sorry if a have posted in the wrong place

jnjdav1
Regular Member


Date Joined Oct 2003
Total Posts : 23
   Posted 12/5/2005 6:25 AM (GMT -7)   
YES! YES! YES!
 
I suffer from the exact thing. I always know when I am going to have a seizure. They occur about two hours after I wake up. Does she feel differently on these mornings? She needs to try to remember because this can help her. I wake up at 6:00 every morning and I have time to make sure I am going to feel okay that day before I take my daughter to school at 8:00. I have dealt with this for 16 years and I am now a pro. (Sounds like a good thing???)  If she is prone to having them in the morning she needs to always shower or bathe at night. Does she have them around the time of her periods. I have something called Cataminal Epilepsy and they only occur right before or during a menstural cycle. If so, there are medications to help this. Now strangly enough, the only time I have ever had a seizure not around my period, is if I have not had enough sleep.  She needs to sleep 8 hours a night. If she has a regular routine she will feel better and avoid at least some of the episodes. I go to bed at 10:00 and wake up at 6:00. She might want to try to get up at least two hours before she has to go to school and this will give her time to make sure she is feeling well enough for the day.
 
I hope this has helped.
 
PLEASE check on the menstural cycle. This sounds just like how I started.
 
Nikki

leensa
New Member


Date Joined Nov 2005
Total Posts : 8
   Posted 12/12/2005 12:41 PM (GMT -7)   
Hello Nikki I lost my link to this site and have only just recovered it. Your comments are really useful , thankyou. I suspect that the episodes may be related to hormones so I am keeping a record of when they happen. It makes me feel happier that you describe yourself as a pro!!! I am struggling terribly at the moment because I am so anxious for my daughter. Mornings have become a trial and a stressful time... I am constantly listening out for stange bumps and noises. I worry that she is going to hurt herself or that she will have an attack and I will not be there. I am just about to ring someone since I desperately need someone to talk to but dont want to panic my daughter... after all it is she that has the condition.. not me!! Thanks for repling to my post. GILL

pollyhawthorn
New Member


Date Joined Aug 2005
Total Posts : 8
   Posted 12/30/2005 8:04 AM (GMT -7)   
Hi.
I was diagnosed with Juvenile Myoclonic Epilepsy when I was 19 and I'm now 31. I've been on so many different types of medication, some that have given me side effects and some that have made my epilepsy much worse!
I saw a new neurologist last year as I wanted to come off my medication, I thought it had gone away but was told that the type I have will would never go away and I would need to take meds for it for the rest of my life. Apparently the type that your daughter and myself have is one of the best types!??? It acn be well controlled with the right type of meds.
I was on 200mg of Epilim and 50mg of Lamictal daily and because I was planning a family in the future I was weened off the Epilim and my dose of Lamictal is now 300mg daily. I feel great now, my head feels clear again (it never did on Epilim) and my epilepsy is better controlled.
I used to have fits in the morning too. That's what happens whith this type of epilepsy, I used to fall backwards on to the floor and everytime I covered my face up when I was washing my face I would jerk. I would also lose my train of thought. I could be walking down the street and fall to the ground 3 or 4 time a day and have huge bruises on my knees. I'm not saying that his will happen to your daughter at all. I used to keep a diary of the fits I had.
The most important advise that I think I can give you and I wish my parents had taken notice of the neurologist at the time is don't let your see you daughter panic, don't wrap her in cotton wool and let her get on with things as normally as possible. My parents didn't allow any of that and it got to the point where I started to hide it from them and people around me. That just made matters worse for everyone around me.

leensa
New Member


Date Joined Nov 2005
Total Posts : 8
   Posted 1/3/2006 12:55 PM (GMT -7)   
Thanks for your post... what you are saying really helps me. It is great to hear from someone with the same problems as Kate, my daughter. You are so right when you say not to wrap her in cotton wool. It is so encouraging to hear that the med Lamictal is working for you. Kate has been on this from the start and is now on 150mg a day and still building up. I do worry about her so much but realise that I must not crowd her or appear too anxious. Are you based in the UK or elsewhere? Up to now Kate has only fitted in the morning soon after getting up. Since her first seizure in August 2005 she has had 4 more episodes. I did not realise that this type of epilepsy could occur at other times too. I would be really grateful if perhaps you could post again with a message for her but I will understand if you do not. Thanks so much .Gill.

memerelorraine
New Member


Date Joined Jan 2006
Total Posts : 19
   Posted 1/11/2006 6:51 AM (GMT -7)   
Hi leensa,

When I was first diagnosed with epilepsy my symptoms manifested themslves the same way your daughter's did. I was in the bathroom, fell and was found with a broken nose. I lost 3 days and when I realized where I was and what had happened I was then told I had epilepsy. A big shock and then it beggan. All the fears, the frustration, the anger and then the medication adjustments and on and on. I have to tell you that in time things do settle down, we adapt and go on to live our lives with something that becomes part of our life. I have come to realize that I cannot let if consume my life but allow this disorder be a part of who I am, just me unique in the fact that this is who I am and people must accept me this way. It has not been easy for me or my family but we have adjusted and with there support and the support of those around me I have made it this far and will continue to grow. It seems to me that you are there for your daughter and from this point on no matter what she faces that is the most important thing you can do for her is to be there and face it with her. First and foremost emotional support is needed, the acceptance of the person she is and will become.

Lorraine
 


memerelorraine
New Member


Date Joined Jan 2006
Total Posts : 19
   Posted 1/11/2006 6:53 AM (GMT -7)   
Hi there leensa... email if you like :)
 


strawdog
New Member


Date Joined Jan 2006
Total Posts : 2
   Posted 1/23/2006 1:28 AM (GMT -7)   
Hi Leensa,
I'm brand new to the board and registered to let you know that I, too, have been where your daughter is now.
I was diagnosed with epilepsy at age 15 after having occasional myoclonic seizures (the twitches) for 2 years. I was definitively diagnosed further with Juvenile Myoclonic Epilepsy at age 23. I am now 31.
At first, I also thought the myoclonics were something that just happened when i was super tired or during menses. I actually thought it was something that happened to all women, and I just had to deal with it. I was diagnosed after I had a grand mal at school and ended up at the emergency room.
I kept on having myoclonic seizures all through high school because i was on the incorrect medication -- apparently, Dilantin does nothing for myoclonics (for me, anyway). I switched to a low dose of Depakote and that keeps the myoclonics seizures away.
I only have seizures, and myoclonics especially, when at least three of my triggers are all lined up. They are: menses, lack of sleep, lack of food, flickering lights, and stress. I can guarantee a seizure if all of them are present! My myoclonics start within 30 minutes of awakening, and sometimes generalize into a grand mal, so if I notice them when I'm in the shower, I get out right away and just crawl right back into bed and try to go to sleep.

My advice to your daughter (and this will be long, but this is the short version):
1. How do I say this, especially as a newbie here? So I'll just say it: You're still wonderful. You really are. After I was diagnosed at 15 I thought I was horribly broken. I thought no one would really love me. And trying to fit in? While twitching? It was completely beyond me how I would do it. But you know, my friends did love me, even while I was adjusting to lots of medication. I just had to take some time to love myself, too. And I had to be unafraid to tell people what's going on.
2. Don't push yourself. Landing unconscious on your head ain't pretty and it ain't fun. It's hard because the twitches don't affect your consciousness, well, not *really*, and so the first thought is to work through them. Uhhhh, no. They just get worse, in my years of experience. Just put the hairbrush down, because you'll just end up smacking yourself about the head with it, really. (Yes, I have given myself a black eye recently with the cordless phone eyes )
3. Remember that you can still do plenty of stuff, even with JME. Actually, JME, once controlled, isn't that bad IMO. I usually know when I have to take it easy, and when I'll have extra energy. Just take your meds, and go about your business. Make sure your best friend knows what's going on, and how to take care of you in an emergency.

My advice to you:
I second the advice to leave off the cotton wool (if that's, as we say here, to not treat her with kid gloves). Treat Kate like any other teenager, but with meds. The only imperative is that she rest when she feels "weird." Since the seizures are usually set off by lack of sleep and teens are always running deficient on sleep, you'll have to get used to her sleeping in excess of 12 hours a day. If she's at all like I was. But this is one thing I stress to new moms of kids with JME: make sure you talk about the seizures a lot. What they feel like, how they're coping, and everything else along with it. It's easy to get to feeling totally out of control, but you can be a measure of sanity and safety.

Good luck, and remember -- it'll get easier.

djdaz_1985
Veteran Member


Date Joined Jan 2006
Total Posts : 2408
   Posted 1/23/2006 7:55 AM (GMT -7)   

Hi Leensa,

I was diagnosed with epilepsy when I was 16 also (I am 21 now). My first seizure was quite a violent one and like your daughter... it was in the morning before leaving for school. Epilepsy can be very scary to look at (my mum has epilepsy also) until you get used to it, but with time it does get better.

My medication (I take Carbamazipine morning and night) controls mine very well and there are little side effects. As for Lamotrigine, that is the medication my mum took when the neurologist finally found one that suited her and there were little side effects to that one either. What I would say is not to worry if Lamotrigine has little or no effect as there are plenty of other anti-epileptic drugs out there that you can try.

Epilepsy (generally) doesnt inhibit your life. With the exception of driving, (And epileptics CAN hold a driving licence... see www.dvla.gov.uk for details) you can carry on pretty much as you were before. If you find something specific that triggers seizures (This can be shampoos and body lotions... thinking about the bathroom) then simply change it.

My thoughts are with you, Best wishes

Darren


babybear
New Member


Date Joined Jan 2006
Total Posts : 15
   Posted 1/29/2006 4:36 AM (GMT -7)   
I don't have a lot of info bing new to this whole epilepsy thing myself, but I wanted to offer my support. It sounds like you have gotten some pretty good advice here so I won't add a lot to it excpt that aftey is always important--You can't hear that enough.

I hope thigs start to level out--best wishes-bb
Maddness, oh come swiftly, I will face our destiny
As the night passes through our hands, I know you've come for me
But I will feel your presence strong, And breathe you in as fate
The horses will face tword sunset, And I'll realize much too late.....
 


leensa
New Member


Date Joined Nov 2005
Total Posts : 8
   Posted 1/31/2006 2:46 PM (GMT -7)   

Thanks to Lorraine, Strawdog , Darren and Babybear,

 I have just made my daughter aware of your posts and she is reading them right now. Thanks so much for your thoughts, comments and support. Gill.

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