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MaddieChilver

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Hello everyone,
My name is Maddie, i am currently 16 years old and i have only just joined this lovely community. i wanted to share my story to see if there is many other people out there like me.
in 2021 i had 3 seizures, one morning i got up out of the caravan and did my normal routine as always and packed up to go home from a family holiday in the gold coast. i sat in the car and next thing i know i am in an ambulance on the way to the hospital i had absolutely no idea what was going on. i had my mum next to me crying saying its ok sweetheart but i was still so unaware of what was going on. so i got to the hospital and they siad i had a seizure, my seizure went for 5 mins and apparently i stopped breathing and went all blue. i stayed there for about 9 hours and then went back to the caravan park for the night they siad we are fine to drive home just be careful and need to have a few follow up tests at the hospital near where i live. about a month later i had another one after i finished work i helped mum carry the food shopping in and apparently i was doing circles near the car and hit my head and got a big cut on it. this one was shorter and my family wore more calm and knew what to do. now there was farther investigations on this one i had to have an eeg, a couple mri and ct scan, lots of blood work was being done and they couldn't find much. anyways after my eeg results came back it siad i have epilepsy. i got really heart broken and annoyed at myself becasue i am a indepent person and love doing things by myself but now i was very limited to the things i could do especially not being able to drive and get my hours up or going swimming after school with my friends on the river it makes me sad not being able to have as much freedom. anyways im hoping to meet people like me that can help. thank you
 

CQ:)

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Hi Maddie
Welcome to the site
It can be hard when newly diagnosed but this is an amazing site and we all know what it’s like. Everyone is great on here 😊

Have you been put on medication?

Im 44 and do live on my own but I still have a mother who likes me to ring her once a day to let her know I’m ok. I try to keep as much as independence as I can but I know there are some things I can’t do which I’ve accepted.

From reading your post I see you’re from Australia, do you mind if I ask which state? If it is QLD?
i also live in Australia but on the NSW /Viv border.

We don’t see a lot of Aussies on here 😉
 

MaddieChilver

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i only just started medication but the doctor siad they wont stop them completely
i live on the boarder too im from Echuca i live on the Murray river we traveled from qld back to vic before covid wouldnt let us back home.
 

CQ:)

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I’m in Albury / Wodonga on the Victoria side of the border 😉

i remember seeing on the news when the border was still closed people couldn’t get over 🙄. It was crazy.

Sometimes it can take a medication a while to work or you may need to try more then 1 medication before you find the right one.

I can imagine it must be scary but we are here for you even if you want to vent

I’ve had epilepsy most of my life, had tonic clonics from 9 months until I was 3 1/2.
Then I had a 21 year break until my seizures returned in 2002, when they returned I was having simple / complex partials and the odd tonic clonic. We tried variety of meds but none controlled the partials.

I had brain surgery in 2011, went 2 years seizure free and the partials returned but not as bad or often as pre surgery. I have a great team of specialists in Melbourne where I had my surgery. I do have to take a few anti seizure meds for both the seizures and one for migraines but they help control the seizures.
 

MaddieChilver

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yeah i dont like the feeling of having seizures and i hate hospitals with a passion they scare me i on top of all my other problems have inattentive adhd and anxiety so its hard sometimes im doing well at school at the moment and the medication i am on to help with those are making me having a seizure a higher risk so i had a big decision to make weather i stop all of them and start something diffrent without epilepsy medication or stay on them and start my medication.
 

CQ:)

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It’s hard 🙁

As I said we are always here.

I usually cope with my epilepsy because I’ve always had it but my seizures did change after surgery and I do struggle with that at times

But I’ve had struggles with my mental health in the past few years but I have an amazing team of specialists helping.
Not just the specialists at the Austin where I go for my epilepsy where I had my surgery but I also speak to a clinical psychologist once a month whose been helping me.
 

Nakamova

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Hi Maddie, welcome!

When an epilepsy diagnosis is new it feels pretty scary. Eventually though, you’ll get a better sense of what's going on, and what to expect. There are a lot of meds to treat epilepsy out there, so for your doc to say that they'll never be controlled isn't necessarily true. Everyone's different, and as CQ said above, sometimes it can take awhile to find the right med or right dose. It definitely helps if you're seeing a good neurologist, one who is familiar with all the options.

I had my seizures out of the blue too, about 22 years ago. My seizures have been fully controlled by meds, so I drive and swim and all that stuff. Here's hoping that happens for you. Hang in there and don't be afraid to ask your neuro lots of questions about ways to get your seizures under control. You might find that the ADHD drugs were part of the problem, so maybe cutting back or stopping them will ultimately help. Other causes of seizures can be hormonal or metabolic; if you're having a lot of seizures it can help to keep a journal to try and find patterns.

In the meantime, you're doing the right thing by looking for answers and support. Feel free to keep asking questions here, or vent if you need to. :)

Cheers,
Nakamova
 

Porkette

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Hi Maddie,
Welcome to the forum! I started having seizures when I was 10 yrs. old and I'm 59 now. It was hard for me to get used
to them in the beginning but as time went on I didn't let my seizures stop me. I have absence and complex partial seizures.
I've never been able to drive in my life but I still worked teaching for 35 yrs.

I found that most of my seizures happened when my hormones were changing each month. If you have a calendar you
may want to write down anytime you have a seizure. Write down what time it happened and describe it. Also write down
when you start and stop your monthly cycle, by doing this your Dr. may see a pattern in your seizures and they can tell if
it's hormone related.

I tried over 10 different seizure meds but nothing stopped my seizures so I had a DNA test done and I found out I
was drug resistant to all seizure meds out on the market now so I had surgery to reduce my seizures back in the mid
1990's and it was as great help, but what has really helped me is the medical marijuana that has reduced my seizures
along with 2 Tablespoons of apple cider vinegar that has mother in it. I know it may sound crazy but sometimes vinegar
with mother in it can help a persons seizures.

I wish you the best of luck and May God Bless You,

Sue
 

CQ:)

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Hi Maddie, welcome!

When an epilepsy diagnosis is new it feels pretty scary. Eventually though, you’ll get a better sense of what's going on, and what to expect. There are a lot of meds to treat epilepsy out there, so for your doc to say that they'll never be controlled isn't necessarily true. Everyone's different, and as CQ said above, sometimes it can take awhile to find the right med or right dose. It definitely helps if you're seeing a good neurologist, one who is familiar with all the options.
I found out last night Maddie and I a couple of hours from each other and we’re classed as country. We are much smaller then the cities.

Not sure about Maddie but where I live there’s only 1 neurology clinic with 2 neurologists and the neurologist I saw for 9 years treated all neurological conditions not just epilepsy.
My old neurologist was nice but he didn’t tell me much and I didn’t ask questions, he just kept adjusting meds until he finally suggested surgery and referred me to the city.

Where I go now is in the city at the hospital where I had my brain surgery. I have a team of specialists epilepsy nurse, neuropsychologist (who have been there since surgery), neurologist and most recently neuropsychiatrist. All are amazing and the neurologist always discusses any changes with me whether it be med change or putting me on new med. Even when he referred me to the neuropsychiatrist he asked if I was happy to go ahead with referral before he would do it.

Im currently doing Telehealth with the neurologist and neuropsychiatrist, originally with the neurologist it was because it was easier due to travel but then COVID hit.
 

MaddieChilver

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Hi Maddie, welcome!

When an epilepsy diagnosis is new it feels pretty scary. Eventually though, you’ll get a better sense of what's going on, and what to expect. There are a lot of meds to treat epilepsy out there, so for your doc to say that they'll never be controlled isn't necessarily true. Everyone's different, and as CQ said above, sometimes it can take awhile to find the right med or right dose. It definitely helps if you're seeing a good neurologist, one who is familiar with all the options.

I had my seizures out of the blue too, about 22 years ago. My seizures have been fully controlled by meds, so I drive and swim and all that stuff. Here's hoping that happens for you. Hang in there and don't be afraid to ask your neuro lots of questions about ways to get your seizures under control. You might find that the ADHD drugs were part of the problem, so maybe cutting back or stopping them will ultimately help. Other causes of seizures can be hormonal or metabolic; if you're having a lot of seizures it can help to keep a journal to try and find patterns.

In the meantime, you're doing the right thing by looking for answers and support. Feel free to keep asking questions here, or vent if you need to. :)

Cheers,
Nakamova
thank you i have been writing notes on my computer to see if theres any difference each time but i cant pick anything out. well theres a positive at least you wore able to go back to your normal life. it puts alittle more spirt in me to have hope.
 

MaddieChilver

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Hi Maddie,
Welcome to the forum! I started having seizures when I was 10 yrs. old and I'm 59 now. It was hard for me to get used
to them in the beginning but as time went on I didn't let my seizures stop me. I have absence and complex partial seizures.
I've never been able to drive in my life but I still worked teaching for 35 yrs.

I found that most of my seizures happened when my hormones were changing each month. If you have a calendar you
may want to write down anytime you have a seizure. Write down what time it happened and describe it. Also write down
when you start and stop your monthly cycle, by doing this your Dr. may see a pattern in your seizures and they can tell if
it's hormone related.

I tried over 10 different seizure meds but nothing stopped my seizures so I had a DNA test done and I found out I
was drug resistant to all seizure meds out on the market now so I had surgery to reduce my seizures back in the mid
1990's and it was as great help, but what has really helped me is the medical marijuana that has reduced my seizures
along with 2 Tablespoons of apple cider vinegar that has mother in it. I know it may sound crazy but sometimes vinegar
with mother in it can help a persons seizures.

I wish you the best of luck and May God Bless You,

Sue
thank you very much ive only just stated medication and its very hard stuff makes me very sleepy. my mum did say to my doctor about that becasue i was at the end of my cycle fro my first one and the second one i had i was to but the doctor doesnt seem to think its my hormones
 

MaddieChilver

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I found out last night Maddie and I a couple of hours from each other and we’re classed as country. We are much smaller then the cities.

Not sure about Maddie but where I live there’s only 1 neurology clinic with 2 neurologists and the neurologist I saw for 9 years treated all neurological conditions not just epilepsy.
My old neurologist was nice but he didn’t tell me much and I didn’t ask questions, he just kept adjusting meds until he finally suggested surgery and referred me to the city.

Where I go now is in the city at the hospital where I had my brain surgery. I have a team of specialists epilepsy nurse, neuropsychologist (who have been there since surgery), neurologist and most recently neuropsychiatrist. All are amazing and the neurologist always discusses any changes with me whether it be med change or putting me on new med. Even when he referred me to the neuropsychiatrist he asked if I was happy to go ahead with referral before he would do it.

Im currently doing Telehealth with the neurologist and neuropsychiatrist, originally with the neurologist it was because it was easier due to travel but then COVID hit.
yes thats right we dont have a neuroglist in echuca so ive been given a referal for one in glen wavely so it will be a long drive done to see this person. i am doing teleheaths with my pediatrtion actually and have been for a while now
 

CQ:)

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yes thats right we dont have a neuroglist in echuca so ive been given a referal for one in glen wavely so it will be a long drive done to see this person. i am doing teleheaths with my pediatrtion actually and have been for a while now
My neurologist at the epilepsy clinic is in Heidelberg. It used to take me 3-4 hours train drive drive each way which I’d do in day. So I’d leave Albury or Wodonga at 6:30 get to Melbourne at 10:30 then switch train to Heidelberg Ang get there about 11:30. Clinic doesn’t start until 1:30 so I used to have some lunch, go say hi to my epilepsy nurse then waste time until I had to go to clinic. I’d get home at 10:00pm

But my neurologist decided in 2018 to switch to Telehealth as it was easier because of the travel. At 1st we were doing video conference but when covid hit and they made teleconference for all appointments it changed to phone. I don’t mind either way. I work part time and the day the clinic is on is the day i work so I work it with my boss to go to a quite room for 10 mins to do my teleconference with the neurologist.

With the neuropsychiatrist which are same day as neurologist appointment I prefer doing those at home so I take the days off.
 

MaddieChilver

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yeah there heaps easier and more time affect for everyone it takes us about 4 hours to get to Melbourne so a-little bit but we get used to it sometimes its the traffic that gets bad. i hate being fussed over so the less appointments the better i recon.
 

CQ:)

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I’m exactly the same. I don’t like people fussing over me but I guess they have to do their jobs 🤷‍♀️.
Once they get the 1st main tests etc done and hopefully get your seizures under control better with meds it will hopefully get easier

Don’t be afraid to ask your new specialist any questions either, even ones you’ve already asked your other dr. As they may have a different answer

Before my surgery I was waking up with bad headaches and finding that clothes were all over the place or I was in different clothes. I had a suspicion I was having seizures in my sleep so I asked my old neurologist but was told I was sleep walking.
I wasn’t happy with this answer and thought there was more to the events then just sleep walking so not long after I was referred to Melbourne to see a epiologist.
I told him about the events and asked him and he was 90% sure I was having partial seizures in my sleep.
 

MaddieChilver

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wow thats amazing good idea to get a second option on things especially if it relates to your health. i hate getting bad news and it makes me very uptight all the time i know people are just trying to help me but i was the least problematic person in my family and now ive got the issues
 

Plasticmask

I don't have a "deaf accent"? Hm, hadn't noticed.
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Welcome Miss Maddie. You'll like it here, of that I am certain :)
 

CQ:)

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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.
 
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