I'm a Newbie and heres my story

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Crazy Monkey

Crazy Monkey

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Hello Everyone, I am the Crazy Monkey and this is my story.

This is my first thread and I would like to introduce myself. But before I do, I would like to praise all of the parents that post messages on this site looking for support for themselves and ways to pass it on to their children, I feel that it is very important for children to understand what is happening to them, learn ways to talk about it to their friends and family and also to learn that being epileptic doesn't need to be a life of restrictions.

I am 30 years old and live in the UK, I was diagnosed with epilepsy at the age of 10 after having regular absence attacks. I was put onto Sodium Valporate and left to deal with this huge change in my life on my own, my parents were to busy thinking about and feeling sorry for themselves and how it was going to affect them, it felt like they never gave 2 thoughts to me and my feelings and this has continued through my adult life, they never once sat me down and chatted to me about my seizures and how it might effect driving, school etc. This has left me having to find my own way around the restrictions that epilepsy causes in my life and I believe I do a good job of it. The only area that I have a problem with is talking about it to other people and I think that this is due to a lack of support as a child, I have never sat down and chatted about my seizures to my family or friends. As a result of this very few people know that I am epileptic and this is the way I have now come to prefer it, though it would probably be a good thing for this to change.

I am on medication, I currently take 450mg of Lamictal and am now about to start Zarontin, my medication has never managed to control my seizures and I appear to have the specialists 'stumped' as we have tried several medications and none of them seem to be able to totally eradicate the attacks, I have attacks every hour during the day (not sure about night).

These have come to be part of who I am and it is looking like I am going to be stuck with the seizures all of my life, (hating them doesn't make them go away) so I had to find a way for me to co-exist with them, I try to keep positive, I try not to let the attacks affect my life more then what they have too, I do most things that 'seizure free' people do and probably a lot more, I live a relatively normal life, sometimes I overstep the sensible mark, but who doesn't. There is only one restriction I desperately want to find a way round but there is no way and that is to own and ride a motorcycle, last year I was very lucky to briefly go out with a guy who owned a motorbike and he took me for a trip on the back of his, it was brilliant, one of the highlights of my life so far.

For any parents that are worried about what the future holds for their children that have similar seizures to me, then don't be, there is no need. I have found my way through the world with no support, I have a good job and I have done everything that most people only dream of doing for example I have travelled the world including the Arctic, Oz, Africa, 39 U.S. states, I have chased tornadoes and climbed erupting volcanoes, I have only come across restrictions twice, one was diving on the Great Barrier Reef (I had to snorkel instead) and the other was a charity parachute jump, as my friends do not know that I am epileptic I had to pretend to just chicken out.

I am hoping that my case can be used as inspiration for parents and children alike that wonder what the future holds, so if you or your children suffer from uncontrolled absence seizures every day like myself, these are not as restrictive as you first think, sure they get you down from time to time and they can be embarrasing but they are the hand that we have been dealt and you have to try and keep positive. I have discovered that all you need is a friend with a driving license and you can achieve anything including your wildest dreams, I have and I am living proof.

Thanks for reading

Kim
 
welcome

welcome crazy monkey, i too am new to this sight but just in the small time i've been here i have been welcomed with a smile and open arms, so here's my hand in friendship. it's amazing that you are so positive after what your parents put you through, though i must say i know the feeling. when i told my mom where i was (the hospital) and what had happened (a seizure) the first thing out of her mouth was. "what will my friends think?" real helpful. good luck with your treatment and here's hoping i see you around.:hello::hello:
 
Hi Homemom360 and thanks for the very kind welcome, my Mum insisted on telling all of her friends about my condition which I felt was a real lack of respect for me. Its not until you join a forum like this that you realise that there are a lot of other people in similar situations with different outlooks. My outlook is positive because you only get one life in which to achieve everything you want to do in the world.
 
firstly u were saying it doesnt mean a life of restrictions then go on to mention a bunch. then you say none of your friends know. crazy much? i almost don't believe you. 30 years old and that stupid? you need to tell people around you in many situations, even if it's only one person, it's life threatening to keep such things quiet. especially if you're not controlled.
 
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1096 - Don't believe me? my friends do not know, only 2 people in my workplace know out of 450 people and one of them is the company nurse, I am very good at keeping it a secret. I have had years of practice. There are restrictions but it doesn't mean that there are not ways around things such as the transportation issues. I pointed out that I have absent seizures and I do not consider these to be life threatening. It has taken me since Feb to psyche up the courage to type a message in this forum and then I go and get your response, it now makes me wonder if it was worth it in the first place. How would you like to be called stupid and a 'nearly lier' on your first thread?
 
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Hi Kim - Welcome to CWE
I don't have seizures but my daughter does. She had her first two years ago at the age of 14. She never had absence seizures but classic tonic clonic variety. There is no hiding that. Plus it is very dangerous. Unfortunately everyone in her life has to know. You are lucky to be able to keep it so controlled.

My daughter has gained quite a lot of control from Neurofeedback therapy. She is not taking any form of medication. We also have nutritional restrictions / changes and supplements that support brain health.

I hope you continue to post here, and challenge those that have different experiences. I know there were some that were shocked that I was willing to take my daughter off of meds, but I did it. I believe that they caused more seizures than helped control them.

So you will run into a variety of members that will occasionally challenge and push your buttons. Stay steady and stay strong, and offer a different perspective. We all can learn from each other.
 
Hi, Kim! Welcome. I'm pretty new here too, but it's been really nice to be able to speak openly with others. I too, suffer from absence seizures and have been very successful at hiding it. Fortunately mine are well controlled at the moment (knock on wood). I can really relate to what you wrote. I often feel resentful towards my mother because she is very open about my condition. I don't think she realizes that I am the one that gets the "I hope she doesn't 'spaz' in front of me" looks. My husband is wonderfully supportive, but he just doesn't understand what it's like from this side. I once made the mistake of being open with a group of people in my church about my condition. The following Sunday, the woman who was supposed to keep the children in the nursery was unable to attend, so another woman and I volunteered. That woman actually turned to me and said, "You can come help in the nursery as long as you promise not to seize up on me." With reactions like that, why would I tell anyone?
 
You've mistaken the jovial manner in which I wrote that for something a little more sinister then intended.

I was attempting a brazen tone much like a wake-up-call because I don't agree with keeping it a complete secret. Sure if it's not going to majorly affect your work than there isn't a need to tell your employer, some may have issues with it. But you're friends? Tell them, you'll be surprised at how accepting they are. Just tell it how it is. I think it helps to just slip it in (timely enough) in general conversation like it's no big deal, just something to be wary of. Kill the stigma.

I am sorry if my post was received with ill will. I admit I knew it could happen but I ignored it.

On second read you're post was really friendly and I feel right guilty for mine. So I hope you accept my apology. Make sure you stick around, coz 100% of the folks around are real good people and will show you much in light of coping with epilepsy.

Heath
 
Hi Kim ,

Welcome and thankyou for your story , it is an inspiration for me.

I am mum to Jacinta who has uncontrolled absence seizures.

It is encouraging to here from an adult with the same seizures as my daughter, who is doing so well and doesnt let it hold you back from anything...good on you!

Jacinta also doesn't want her school friends to know, we are working on this.

Thankyou and enjoy this forum.
Cheryl
 
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Had to jump in here-This is a great group of folks and occassionaly we spout a bit ( I personaly love sarcasm) but I have found more info and support than anywhere else:clap: Supportive and unsupportive family...we all got 'em in some degree or another, but here there is only support. For myself, I run the gamut of auras and seizures. Some are vague and some are lights out, wet your pants, wake up a bit out of sorts. However I am with Robin when it comes to meds. For me they were way worse and even contributed to more events...I'll take my events as they come, learn my body's signals and try my d*mndest to keep the meds to a bare minimum for as long as I can. I recently began phenobarbitol 50mg at night only. It helps me to get a decent nights sleep and I can still go about my life. Yes E has changed much in my life, I was fiercely independant, working and very active...now I have learned to say thank you when someone offers help, I do what I can when I can and when I can't I don't.:mrt:
 
Hi Kim

:cheers:

Come on in Crazy and have a look around the house. You will see that the format with different rooms, allows us to move around as our moods change and to separate info from support from relaxation.

Then have a seat by the fireplace, put your feet up, and I will bring some coffee. This house may turn into your home away from home very soon.

:cheers:


p.s. I hope you understand the 2nd response from 1096. They are really a very nice member. Once in awhile we take little jabs at each other (with smiles), but since we are all in this together, we are very supportive overall.
 
Yes, I have read 1096's reply and I was about to accept his apology, I was a bit late up today with it being the weekend - as well as being the Crazy Monkey I am also known as the Lazy Monkey and have only just logged back in and read his message.
Everyone has been so friendly and I have been receiving a lot of messages, I am hoping to fit right in and become a long term member.
 
Hiya 1096

Apology accepted, maybe I was just tired and took your message the wrong way, it was gone midnight here in the UK, I have a wicked sense of humour, so watch out, Crazy Monkey is my true nickname, due to the crazy things that I do whilst travelling and I am also the joker of the pack at work.

I think that it is down to personal choice on who you decide to tell and in my first listing I did mention very few people know and not none. This is the way I prefer it, I have found people to be very judgemental in the past which is the reason why I keep my seizures quiet, I envy anyone that is able to talk freely to their friends and I understand that for some people it is a necessity that people around them know and understand their condition. I am hoping that by joining this community it might help me to come out of my shell a bit and move on towards telling some of my friends, they have obviously seen me having seizures coz they are a regular occurence, but they have never questioned them. I think because I tend to do everything that they do, some things I probably shouldn't because they would be classed as putting myself in danger, but you only live once.

Talk to you soon and sorry for th misunderstanding

Kim
 
I was just searching for a thread that I thought we had on this subject as to when to tell others. If anyone can help me out in finding it I could sure use it. Thought it might share some light on this subject.
 
Welcome -
It sounds like you lead a very active life. What an inspiration to do so many things that others only hope to do some day, even those without E. I taught my daughter not to be ashamed that she has E. I am also teaching my granddaughter not to be ashamed. She tells people very openly that she has Epilepsy. I bought her a new medical alert bracelet and she was showing everyone her new Epilepsy bracelet.
 
Hi there Ho there Crazy Monkey! I am amazed with all of your major incredible accomplishments. I am just starting to travel outside the US. I'm ready to step outside my boundaries literally and figuratively.

It sounds like you're a really athletic upbeat person. Swimming is one of the most active physically strenuous activities. Hopefully you did that with a friend.

I own a border collie (or does she own me?) who is extremely playful and active. She has the most intense stare with an extremely rowdy personality. She is probably the best investment I did in years. I adopted her from an animal shelter when she was somewhat sick. She now has the life of luxury- well fed, well entertained, constant attention, totally spoiled..you get the picture. After I bought her, my seizures practically stopped. I think she could potentially sense a seizure. She is extremely sensitive emotionally and follows me everywhere. My lack of driving forced us to take long nightly walks- a very healthy alternative to breaking our stress levels. And, by not driving, I also walked a lot more then the average American.

I take Lamictal and Mysoline. From what I understand, one drug is a slow release and the other is a fast release. So, I'm constantly covered all day. I am always getting blood tests to check drug levels and liver function tests. I suppose absence seizures may be hard to detect for the average person.

I am also working. Ironically, people there accept my epilepsy. There have been a few exceptions, but I'm converting them one at a time to accept it. I used to avoid the pain by being somewhat introverted. I now figure that people who cannot accept the epilepsy are not really worth my time (especially when I count how much time seizures rob me of that precious time). I can always come home to my dog or pay attention to the good people in my life.

Anyway, welcome to the forum(s) !!!!!!
 
What a fantastic inspiration

Crazy Monkey I really admire you approach to life and have to admit that in some ways it's like looking in the mirror a bit. My parents have been devorced for years and although my mum was fantastic about the condition, my dad and in particular my step mum were awful around it and even told me to go away to room to have a fit at one point.
Before 2001 I was very much in the same position as you and even at the ages of between 8 and 14 taking up to 2000 mg of drugs of the strengths of Sodium Valproate and Tegritol Retard. I was still taking about 3 or 4 grand mal and 50 - 75 petit mal attacks a week. I had neurosurgery for my TLE and for 4 years I had no fits. Despite them returning I have them very infrequently about 2 or 3 grand mals per year and thats it.
Have you investigated surgery or ever been tested for it?
Also I was thinking, would it be possible to do your parachute jump tandem?
I also saw the similarity between when I lost my driving liscence twice and my dissapointment around that and your thrill riding motorcycles. I too felt I had lost something untill I got back on my bicycle and I love it. No one can tell me I'm not allowed to ride, it completely de-stresses me which with helps my Epilepsy and it is such a buzz getting to the top of a steep climb and decending at 40 mph in the crouch position, wind through my hair. The best part is when ever I feel I need a release I just grab it and go, a bit like a motorcycle. You may already be a cyclist, but if your not I can't recomend it enough. But also if you haven't look at surgery it may be another option.

best wishes
 
Excuse the odd time

for the post,it really is 3.18 am in the U.K!I went to my first ever concert!!Linkin Park & Jay-Z in Milton Keynes. Special Photochromic glasses with the particles going vertical in one lens and horizontal in another...help with the strobe lights,no seizures!!I saw a whole concert,and it was AMAZING!!! there is a way around all the problems Epilepsy throws up,I just haven't found them ALL yet...:clap::banana:i boogied the day away!!!
:wave:WELCOME CRAZY MONKEY.:rock::banana::rock:
 
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