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MaddieChilver

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If you have support of your family it helps

Im the one in my family whose always had the health issues. Im the baby and my siblings grew up seeing me have seizures until I was a toddler. They were all married with their own lives when my seizures returned so only one has seen me have a focal seizure as an adult.

My dad also has a neurological condition Huntington’s but his is mild as well other health issues so I can relate to him the most.
yeah it does im the oldest of two brothers im the only girl my brothers and 14 and 11 they are good help but can be annoying sometimes ahah
 

CQ:)

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yeah it does im the oldest of two brothers im the only girl my brothers and 14 and 11 they are good help but can be annoying sometimes ahah
I’m the youngest of 6 so even at 44 to my mum and siblings I’ll always be the baby / little sister
My dad isn’t as bad.

I tend to get defensive if they treat me too much like a kid and tell them off 🤣
 

Plasticmask

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It IS, after all, what we are FOR. Mostly anyway. Protection and annoyance, and helping with schoolwork.
 

Army Vet

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Welcome Maddie!

Hope all is well. Mine didn't hit until I was 24. I had already graduated high school and had done a year deployment in Kuwait/Iraq. Four years later I was having some very "weird" feelings to put it very vague. It almost felt like panic attacks. Confused. Loss of memory. Randomly laughing. Getting up and walking around for no reason. I didn't know what was happening. I spent hours researching online to see what was happening and if there was something to even relate to what I was doing. After I finally found out the right words to describe and find out other people were having similar descriptions, although a depressing find, I was just relieved that there was something to call it. I have simple/complex seizures.

I had never heard of epilepsy not mention how to spell it lol. Once I knew what to call it, I was able to do more research and learn different ways to tackle it like others have suggested. I finally stumbled upon this site and it has been the most supportive. Just having a place to vent is nice. But also talking with people that can relate and possibly give you an "AHA!" moment to try something new.

Again, welcome!
 

XxBlaqkxX

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Welcome to the community, Maddie!

I'm sorry to hear that you have had such experiences and from what I understand, recently diagnosed. It's never easy for people, I don't think, and it's generally a grieving process to get such a diagnosis.

I remember when I was around 9 years old, things in school weren't going right. These things were always happening at school. I guess it makes sense, though - wasn't able to sleep in, a lot of the times I'd be out of it after waking up, etc.

I hate being hospitalized for issues with seizures. That's only been 3 times in my life, and the last 2 times were more recent. The first time I believe I was about 14-15 years old and I was at school - stopped by the security guard multiple times who kept asking me, "Whoa, whoa! What are you doing?" and would get all annoyed like, "Again? Why are you here again?" after that, I didn't have the same relationship with that security guard I did before. He went from awesome, cool security guard to moron to me. His response was frustration, getting angry at me, and he eventually said, "Follow me." and took me over to the on-duty police officer. I couldn't follow with my eyes correctly and couldn't walk a straight line so that totally meant substance abuse. My backpack was searched (thankfully in a corner of the nurse's office where no one was over there), but he checked that thing thoroughly and didn't find anything. My mom didn't have a choice but to take me to the hospital because they're telling her how I must have been drugged by another student or something. My mom was trying to tell them, "Seizures can look like this, too," but they weren't listening to her and she ended up taking me to the hospital. Ugh.

When I was first diagnosed, my parents were also hesitant of going swimming. My best friend's grandmother had an indoor pool. She made my friend's mom aware and she always kept an eye on me and if she didn't think she would, she'd bring her adult daughter along for an extra set of eyes. On my friend's pool party on time, I went in early to help her set up. I was having a seizure, but it wasn't obvious. I was fuzzy, out of my mind, and couldn't exercise good judgement. My friend's mom was getting frustrated with me because we were curling balloon ribbons and she told my mom later, "She was just so mad at me the whole time, especially when we were setting up." and my mom said, "Yeah, it sounds like she had a seizure." My friend's mom didn't know because I wasn't convulsing so it didn't seem obvious. Thankfully I didn't have any problem as far as the pool went that day. When I was 14 was when the epilepsy started...while I was at school, go figure.

I remember when I was signing classes for I believe my junior year of high school during the end of my sophomore year. I was hanging out with my friends and we were looking through the classes offered. My friend was pressuring me into taking driver's ed, in front of a bunch of our friends. I had told her about my seizures in the 8th grade after I had one in front of her in art class and she didn't know what to do with me, but she wasn't all that sensitive about it and probably didn't understand the laws or remember. She was like, "Let's sign up for driver's ed! Take it with me!" and I said, "No, thank you." and then she's like, "Why do you have to be such a kill joy?! It's an easy A." and I said, "No, I don't want to take driver's ed." and then she pressured more, "Give me your schedule sign up! I'll write it in there!" like...ugh. I never took it, she never got me to, but was mad at me. I always hated it when my siblings were learning to drive. They would hound my parents, "You never take me driving enough! I'll never get enough experience to take the test! Blahblahblahblah." I would always end up yelling at them and saying, "At least you're allowed to learn the drive! I don't know if I will ever drive!" and my parents never stopped me from doing that, maybe it made them realize that driving is a big privilege and maybe not because they still did dumb things after getting their licenses.

I also had my best friend's mom that I felt made fun of my condition a few times when I was in high school...I was horrified...she kept telling people in her girl scout troop my medical condition without asking. There was a time I couldn't go to this surf camp trip. They did have an on-site nurse, but my parents weren't sure how supervised we'd even be and if something happened to me if anyone would notice. They felt it was too much of a chance to take. My father who is a medical professional always told me, "It only takes an inch of water to drown - just enough to block the air way. Some people think you need a whole bathtub or pool full of water and that's simply not true." and then when my best friend came back she told me, "You really didn't miss anything. My feet are peeling so bad after doing all this walking on the sand." and everything. I didn't know if she was bluffing to make me feel better, but the way her feet peeling was nasty. We watched a movie together and her mom came to pick us up and we went to McDonald's and grabbed a bite to eat. It was nice of her to pay for it and I was enjoying my meal with my friend and her mom said, "You should've convinced your parents to let you go to surf camp. The water wasn't even that deep." It still hurts to think about things my best friend's mom said and I'm in my 30s now.

Thinking on my life, having epilepsy as a teenager was absolutely the hardest thing. People didn't always get it and I was losing friends because of it and I didn't always want to say anything about it because I was embarrassed. I still don't like telling people. Although, at least I'm not in school and can often say, "I'm not feeling well. I'm gonna go." or something and people don't usually question it. It still stinks to get laughed at at the DMV at the time I was 30 and went in to get my permit...and the ladies behind the counter loudly said, "You're how old?!?!" and then later were like, "Well, sweetie. Just come back any time you feel you're ready. I think you're old enough." :( I was about to take the driver's test after being 10 years seizure free and the neurologist gave me the go ahead to get off of my medication and I had a normal EEG result and didn't need a follow up. It was a dream...and then I got COVID. So, I never go the chance to get a driver's license. I hope to eventually be able to get one so that way if there was somewhere I absolutely had to be, was feeling well enough, and no one else could give me a ride I could go. I'm still immensely uncomfortable with the idea of driving. I don't think I'd do it often or just because, but on more of an emergency basis.
 

Sabbo

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Hello. I've had simple partial since childhood, but they weren't recognized as seizures until one occurred during an EEG done after some grand mal seizures I had. I began having complex partials about 25 years ago. I have tried nearly every AED out there for my seizures. I'm taking 400mg/day each of Topiramate & Zonisamide, but still average 1-3 breakthrough seizures/month. The complex partials are especially worrisome for me because I have injured myself severely many times during them, and they occur without any aura. I chose not to drive when I was only having simple partials. The complex partials have kept me from working in the field I earned a degree to work in.
 

MaddieChilver

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hey guys so ive started my medication but i have to gradually increase it im getting really scared because i was in the pool the other day with one of my dads mates and i had a mild seizure i was so scared and im scared its gunna happen at school im on 75mg now but he wants me to get to 150mg if im having episodes now what gunna happen when it gets higher im nervous to go to school and what people will think of me if i have one
 

Plasticmask

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hey guys so ive started my medication but i have to gradually increase it im getting really scared because i was in the pool the other day with one of my dads mates and i had a mild seizure i was so scared and im scared its gunna happen at school im on 75mg now but he wants me to get to 150mg if im having episodes now what gunna happen when it gets higher im nervous to go to school and what people will think of me if i have one
First thing is, relax. Deep breaths. You're too young to die. lol
Reads like the instructions are clear, since you're asking. 150mg if you're having episodes, and you had an episode weaning onto this new drug right? So that's what it says plainly, to do. When you Dr. office opens today, get those instructions straight if you don't feel right about it. Or maybe you should just call them. See what they say. That would be smarter. Just give them a buzz and ask them if that's what you need to be doing, taking the highest recommended dose. Yeah. That's right. I've got that right. :) Do that.
Good morning :)
 

Nakamova

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Hey Maddie --
Depending on the medication, you need to follow a certain schedule as you ramp-up to a "working dose". So hopefully once you reach 150mg you're seizures will get under control. There's usually a range with the dosing, so it's likely that they could go even higher than 150mg if needed. And there are lots of meds out there to try if the first one doesn't do the trick.

I know it's frustrating -- you want the seizures to stop right away! And it’s scary. But it sounds like the scariest thing is the prospect of having a seizure at school and what people might think of you. I know it isn't easy, but you might want to talk to your friends and teachers ahead of time so they know what might happen. If you can, try to be matter-of-fact. Explain that it's like asthma, the doctors are working on keeping you safe, it doesn't change who you are, etc. Seizures might look strange, but if people know what's going on and know how to help, that can make a big difference.
 

MaddieChilver

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First thing is, relax. Deep breaths. You're too young to die. lol
Reads like the instructions are clear, since you're asking. 150mg if you're having episodes, and you had an episode weaning onto this new drug right? So that's what it says plainly, to do. When you Dr. office opens today, get those instructions straight if you don't feel right about it. Or maybe you should just call them. See what they say. That would be smarter. Just give them a buzz and ask them if that's what you need to be doing, taking the highest recommended dose. Yeah. That's right. I've got that right. :) Do that.
Good morning :)
yeah i will its just scary for me nothing has ever happed to me like this and i never thought it would but here i am you guys are so supportive it makes me feel more understood thank you
 

MaddieChilver

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Hey Maddie --
Depending on the medication, you need to follow a certain schedule as you ramp-up to a "working dose". So hopefully once you reach 150mg you're seizures will get under control. There's usually a range with the dosing, so it's likely that they could go even higher than 150mg if needed. And there are lots of meds out there to try if the first one doesn't do the trick.

I know it's frustrating -- you want the seizures to stop right away! And it’s scary. But it sounds like the scariest thing is the prospect of having a seizure at school and what people might think of you. I know it isn't easy, but you might want to talk to your friends and teachers ahead of time so they know what might happen. If you can, try to be matter-of-fact. Explain that it's like asthma, the doctors are working on keeping you safe, it doesn't change who you are, etc. Seizures might look strange, but if people know what's going on and know how to help, that can make a big difference.
yeah my best friend is pretty supportive which is good but i still worry alot
 

CQ:)

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Hi Maddie

I meant to say not sure if you thought about trying epilepsy foundations to help for support or even to answer any questions you have. There are few good Aussie ones but this one is in Melbourne


They also have a page on FB and I believe Instagram
 

MaddieChilver

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hey guys been a long time since i been on here but ive started to be on my journey with my epilepsy, i have 3 diffrent types of seizures one where i have about 4 to 5 a day where i just stare and stop what im doing for like 50 seconds. two i have focal seizures and third are my crinic tonic ones i think thats what there called correct me if im wrong but yes ive had heaps of tests done ive been everywhere ive been to Melbourne for tests because where i live it takes months to get in and i had a three day eeg done where my neurologist found out about my staring seizures. so yeah any ideas on how to keep take or pointers on how to keep notes for your nuro on it all.
 

Plasticmask

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Welcome (back) Ms. Maddie, I'm a newbie compare to you, but I also have two of the kinds of seizures that you have.
The petit maul (blanking out for seconds at a time) and the hard ones, I won't try to correct your spelling but I surely know what they are (I've seen two ways to spell them: grand maul and gran maul, take your pick *I* say), the tonic clonics I don't have but we have someone here who DOES and it breaks my heart reading about them.
I got mine from a bacterium that I picked up travelling in 2016 and it's destroyed my life, since all of this has also taken away my hearing and my career.
Since I cannot drive any longer, the Wife and I donated my car to Cars for Kids, gives troubled and ex-criminal children something to do, fixing cars up to as best as possible and auctioning them off to keep their organization going.
The only "advice" I can offer because you asked and therefore it's not unsolicited advice which is rude, I was advised to keep a Seizure Journal, keeping track of dates/times as well as length of time and injuries as best as you can. Bought a book that is filled with just empty, lined pages and when each page is filled I take a photo of the page and fax it to my neuro team.
Hope that this helps you in some small way, and I forgot to add: Nice to meet you :) .
 

Porkette

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Hi Maddie,
Welcome back! It sounds like you are having absence seizures and tonic clonic seizures. What I do to keep a journal of my seizures is get a
calendar and write down what time of day/night I had the seizure along with the type of seizure I have. My Epileptologist saw a pattern in my
seizures when I did this and also saw I was having "seasonal seizures" which means I will have more seizures in the fall and winter compared to the
spring and summer but some people are the opposite and have more seizures in the spring and summer. All of this is do to the amount of serotonin
this time of the yr. Another thing you can do is take note if you are sick or if there's a low pressure in the weather because often a person will have
a seizure if there's a low pressure because it affects a persons hormones. I wish you only the best and May God Bless you.

Sue
 
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My wife Mary has the epilepsy. My support to you is that I met her when she was 16. She was on medication at the time and the seizures were controlled. We married when she was 19. The seizures have been uncontrolled since she was 24. We have eight children, 22 grand children, and still have seizures to contend with. We have seen a lot and done a lot together and I have never stopped caring and working toward a cure. Currently we are making progress with a new medicine called XCOPRI. I tell about that progress in one of Grandpa Hill's True Health Stories (pod cast). We have had the vns and the rns implants. They didn't work for us. Very important to think, laugh and live. My wife Mary is so happy, so talkative, and fun to be with. The seizures aren't everything.
 

Plasticmask

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I hasten to agree; epilepsy DOES NOT DEFINE WHO WE ARE.
 
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