kind of new here

[AlisonBP]

i have already commented on a thread and started my own after i stumbled across this site last night. felt maybe i should introduce myself as its only polite.

i started having seizures at 17 after a general anesthetic. was put on tegretol which i really didnt like so i stopped taking it. eventually things settled down. years later it started up again. i blame stress. i was 24 and my husband had walked out leaving me with 2 young children, post natal depression and £20,000 of debt. eventually settled down again until 4 years ago when they started up again for no apparent reason. after mri and eeg my neurologist prescribed lamotrigine. 100mg am and pm. no explanation just medication.

that had me under control for the last 2 and half years. this year (i'm now 31) a couple of infections had the seizures back but they went once the antibiotics kicked in. cue another general anesthetic on 10th may combined with a post op infection and very stressful time at home and yes you guessed it started up all over again. seizures every day. a good day i would only have 2. a bad day 10.

gp couldnt prescribe any other meds so upped the lamotrigine so i was taking an extra 100mg in the afternoon. now i have days when i dont have any and on bad days i'll only have 3 or 4 in the day. i dont count how many i have in my sleep as i dont always know.

higher dose has stopped me sleeping and made me short tempered. the temper is settling now but the sleep is still bad. gp prescribed various things to help me sleep but they have side effects too. i cant be drowsy in the mornings or impossible to wake at night as i have my children to look after.

i have various types of seizures from sudden jerking of arms like a child in school excitedly waving their arm in the air when they know the answer to the question to drifting in and out of conciousness while i have quite severe convulsions that occasionally leave me with the more embarassing moments of drooling and other things that i still cant bring myself to mention. i have pretty much everything in between as well.

i try to deal with it by having a sense of humour. i have a lot of jokes with my best friend and my children. its helped them to deal with it. they are 9 and 12 and a few weeks ago were getting really scared. now they joke about tying bells to my arms and legs so people will know if i have one in the night. if i get an aura when i'm not far from home my best friend will try to keep my mind active til i get home to stop me from going in the street. sometimes it actually seems to work. i cant say exactly how. he finds that the most effective way is to ask me completely inappropriate questions that i find shocking. i cant really think of any examples i can give on here.

i know my main triggers are the usual suspects- tiredness, stress, heat and dehydration.

i have finally got an appointment with neurologist for 14th july so hoping he can make some positive changes to meds but i am a little scared as i know med changes can be tricky and take a while to get right.

i'm hoping to make friends with people that understand and i can get advice from or just chat to.

of course there is plenty more but i think i've bored you with more than enough now. so thats my condition and a bit about me too

 

[epileric]

Welcome Alison

Glad you could drop by. I got a kick out of your posts on the "you know you have epilepsy if" thread. Thanks for those contributions.

Also I've found that if I try to mentally process something during a seizure it definitely lessens and sometimes stops it. A neurologist suggested counting backwards by 2's starting at 99. I rarely got past 97 but it made a big dif in how bad a seizure I had. Problem is, after doing that for years I've almost memorized all the numbers so I've got find some other mental challenge.

Meanwhile, good luck finding a med that helps you more than it disables you. I know that's a challenge many people here are having (myself included). Have you checked out the alternative treatments for epilepsy? http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments

 

[Nakamova]

Hi Alison,

I'm on Lamictal (the brand version of Lamotrigine). When I first went on it, it messed with my sleep like crazy (very restless, lots of nightmares), but after a few months my body adjusted and I sleep better now. You might want to give it a little more time. And rather than prescription sleep aids, you could try something like melatonin (over-the-counter supplement; very safe), which has been successful for others here at CWE. Another thing to try is progressive relaxation before you go to sleep. It basically consists of slowly stretching and relaxing each muscle proceeding from toes to head, and also breathing deeply, a little longer on the exhale. A third thing to try is soothing CDs -- there's a particular brand called the Delta Sleep system which can help.

It's interesting that your friend can help you hold off on your seizures by distracting you. I've read about pushing on the pressure point between the nose and upper lip as one way to derail as seizure. Also there's an acupressure hold on the thumbs -- I'll see if I can find the link for that. You and your friend might want to try it.

 

[Nakamova]

Here's the link showing the acupressure move:

http://www.marysherbs.com/Miscellaneous/KiMethodSeizure.swf

 

[Literophile]

i'm hoping to make friends with people that understand and i can get advice from or just chat to.

If you want, send me a PM and I'll send you my name to look me up on facebook. Love to chat with you here or there!

 

[AlisonBP]

thank you for the advice. its always good to have more things to try. epilepric maybe you should try the awkward shocking question routine and see if it helps. you need a friend with no shame though. the other day he sent his 11 year old son to the shops with me with instructions for me to say talk to me if i felt like i was going as he had told him a question to ask me. turned out the question was 'do you fancy my dad?'

wouldnt have worked if it had been my friend asking that question but coming from his son it would. anything that i wouldnt want to answer even in the privacy of my own home is what he will ask me while walking home

 

[epileric]

epilepric maybe you should try the awkward shocking question routine and see if it helps. you need a friend with no shame though.

Promise to let you know if I try it- gotta find a friend with no shame first, though.

 

[SteveUK]

Hi Alison,

Welcome to the forum. Lots of help on this forum, people always wiling to share their help if the need be.

Take care,

Steve

 

[huskymom]

Hi Alison

Welcome! You are always going to be able to find some one here that will be able to help you out or over you a ((hug)). Hopefully when you go to the doctor next month he will be able to help you out with finding the right medication. I always find humor to be the best way to handle just about anything. My children always tease me too. They are grown, so the level of teasing has reached new heights. Neither one of them have any shame:roflmao:

 

[Bernard]

Hi Alison, welcome to the forum. :hello:

... if i get an aura when i'm not far from home my best friend will try to keep my mind active til i get home to stop me from going in the street. sometimes it actually seems to work. i cant say exactly how. ...

That's a Neurobehavioral / Cognitive Behavioral Therapy (CBT) technique. With practice, many people can learn how to "short circuit" an imminent seizure by distracting/changing their brain activity.

 

[RobinN]

Welcome Alison - I have a daughter who has a seizure disorder.
She had her first seizure at the age of 14. She is now 18. After a long rollercoaster ride, we are finally seeing improvement by making nutritional changes.

I always envy people who have known auras. My daughter loses all memory, so we can't ever talk about what led up to the seizure and how she felt before hand. She has tonic clonic seizures so this information would be lovely to know.

 

[AlisonBP]

auras can be helpful. gives you chance to find somewhere safe. most of my seizures i have some degree of consciousness. i will drift in and out but still be aware if someone touches me or speaks to. sometimes i go out completely but not often. sometimes i feel i would prefer to be completely unconcious. hate it when people start panicking. disscussing whether they should call an ambulance. but really hate feeling myself having the seizure especially if started drooling. there was one time i wet myself which was awful. i knew its was going to happen but there was nothing i could do.

when i am fully aware of what is happening i get so frustrated. feel i should be able to just snap out it. shame its not that easy

 

[Literophile]

auras can be helpful. gives you chance to find somewhere safe. most of my seizures i have some degree of consciousness. i will drift in and out but still be aware if someone touches me or speaks to. sometimes i go out completely but not often. sometimes i feel i would prefer to be completely unconcious. hate it when people start panicking. disscussing whether they should call an ambulance. but really hate feeling myself having the seizure especially if started drooling. there was one time i wet myself which was awful. i knew its was going to happen but there was nothing i could do.

when i am fully aware of what is happening i get so frustrated. feel i should be able to just snap out it. shame its not that easy

It's the same with me! I get so frustrated because everyone's saying, "Oh, do this!" "No, do that!" and arguing over how to make it better. I wish I went unconscious, too.

I feel like I should be able to snap out of it, too. So frustrating! Everyone else thinks I should, too, but no matter how much I try I can't!

 

[AlisonBP]

dont know why but i'm suddenly feeling nervous about seeing neuro on wednesday next week. my best friend was meant to come with me but he is a single dad and cant get anyone to take the children to school. wanted him to be there to explain seizures from another perspective as i often dont know whats happened. sometimes i'll think its been a few seconds and that i could hear him the whole time but he'll tell me i was going for 8 minutes.

he's been with me constantly over the last couple of months and i feel lost having to do the most important bit without him. i know its silly when i think of all the things i've got through in my life before we were even friends but this suddenly feels really intimidating

 

[epileric]

Really no reason to be nervous. Remember that s/he works for you & to bring a list of questions so you don't forget anything (& leave room for the answers).

What you might want to do is ask your friend to write up what he sees when you have a seizure & you can either tell the doctor or give him what your friend wrote up.

 

[AlisonBP]

i know i shouldnt be nervous. i've done this several times before. i just feel so drained right now. probably the lack of sleep making me more emotional. can usually chat to friends about it and they make me feel better but everyones got so much of their own stuff to deal with right now. i cant bother them with something so silly.

will ask my friend to write things down if he gets the chance.

need to get used to the idea that its their job to listen to me. i always seem to end up feeling i shouldnt be bothering them as it could be worse

 

[Aicila]

Not everyone is the same and I don't know your friends, but most real friends want to help the people they care about. Some may be nervous and shy away because they don't understand but I'm sure if you let them know you just need someone to vent to they will be there for you. I tend to keep myself to myself most of the time and its hard for me to go to my friends with my problems also, but as a friend, I know that if anyone needed me I would do what I could for them.

As far as not bothering a doctor...it's their job and they get paid a lot of money to do what they do. Not all are great and some are just down right dumb, but you shouldn't feel like you bother them at all. You have questions and they are their to answer them. If one doesn't have the answer then another will.

Just my two cents. I'm sure everything will work out fine for you. Keep smiling, it helps.

 

[AlisonBP]

my friends are usually here for me. at the moment one i hardly see as he is having to work hard to try to keep his business going. by the time he gets home he only has the energy to grab something to eat and go to bed.

my other friend has just split with his wife and been left on his own with 4 children and noone to turn to apart from me so i feel i need to be there for him and not bother him.

right now everyones problems are definately bigger than mine. i'm just feeling a little sensitive and my timing is lousy. i'm meant to be the tough one of the group that fixes everyones problems but right now i cant even think straight

 

[Nakamova]

Sometimes the ones who are "the tough ones" have the hardest time recognizing when it's okay to ask for help. (That's been my story). It sounds like it's your turn to get support, and it's just rotten timing that you're friends are also under stress right now.

 

[Endless]

Oh, Alison,

I so understand what you are saying. I've always been the tough one everyone else relied upon, too. I finally told all my friends what I've been going through. Some of them have stepped up and helped me, and they said they were grateful that finally the score was getting even - they could do something for me for a switch and it felt really good for them.

A couple of friends just disappeared. Family members, too. It very clearly pointed out who is a friend and who isn't. Family members I can't get rid of, but I did shed the magical disappearing friends.