Anonymous #1
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Hi everyone,

I have epilepsy. I was diagnosed at 11 with juvenile onset absence epilepsy. When I was 18/19 I had my first tonic clonic seizure, and have them when I am very tired or stressed.

My medication does not fully control my epilepsy, especially when I am tired/stressed. I have just been referred back to the neuro so I should have my meds upped fairly shortly.

I had a tonic clonic seizure a couple of months back and for some reason this one particularly panicked me (perhaps because I now live alone - I don't remember doing this, but I called my family who live an hour away at 9pm and actually came to get me and take me to A&E (and clean up the blood in the bathroom...)). Now whenever I get a headache I worry that it is the beginning of another seizure and it is beginning to be a vicious circle.

Does anyone know how I might be able to relax a bit more about it?

Thanks,

Moi
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Quin87
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I was diagnosed with epilepsy when I was 19, and it has been an extremely stressful and worrying journey. My first TC seizure, I woke up at the bottom of the stairs in my bedroom without even any recollection of leaving my bed, let alone the seizure. In fact, it wasn't until much later that I even realised that I had had a seizure, and I just that I must have fainted or something. It took me a long time to get seizure control, and my friends had to be trained in administering buccal medazolam as my seizures were long and severe. I was so scared, especially because during the holidays I lived alone in a house in the middle of nowhere.

Do you get auras? I found some comfort in that - once I had learnt to recognise them, I knew to put myself in a safe situation. Sometimes I was even able to tell people I was going to have one.

Epilepsy is scary, because you are not in control of what is happening to you, you can't prevent it and you don't always know when they are going to happen. I found that if. I concentrated on the things that I could do - getting plenty of sleep, keeping stress levels low, eating and drinking well etc - which made me feel better about the things I couldn't control.

Getting control was a long and hard process for me. I really hope that when you go back to the neuro, they will be able to help you find the right strengths and combinations of meds. I think this will make a world of difference. Don't give up, and don't let it stop you from doing the things that you enjoy xxx


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Tiger Rag
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I don't really think this is something you can relax over due to how unpredictable it is.

I had undiagnosed nocturnal epilepsy as a child. I remember one night not being able to sleep. I then woke up and was told I'd had a seizure. Mum only knew because my sister & I were sharing a room, I'd fallen out of bed and my sister couldn't get back in. (we had bunk beds then)

My dad has epilepsy and he's lucky that his is controlled fully and he's not had a seizure in 9 years.
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River85
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(Original post by Anonymous)
I had a tonic clonic seizure a couple of months back and for some reason this one particularly panicked me (perhaps because I now live alone - I don't remember doing this, but I called my family who live an hour away at 9pm and actually came to get me and take me to A&E (and clean up the blood in the bathroom...)). Now whenever I get a headache I worry that it is the beginning of another seizure and it is beginning to be a vicious circle.

Does anyone know how I might be able to relax a bit more about it?

Thanks,

Moi
How many times do you get a headache (without then having a seizure)? Is it not sometimes worth reminding yourself that sometimes it often is just a headache and to try and relax? Easier said than done, I know.

There is a technique called mindfullness that can be used when feeling stressed or anxious. It's about being mindful of what is happening in the moment, including our thoughts, allowing us to better manage them

http://bemindful.co.uk/about-mindfulness/

I actually attended an Epilepsy Action seminar last month (I was volunteering for them at the event) and the final session was on mindfulness and how it can be used to reduce anxiety and stress (and therefore, potentially, seizures). Very interesting.
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Anonymous #1
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(Original post by Quin87)
I was diagnosed with epilepsy when I was 19, and it has been an extremely stressful and worrying journey. My first TC seizure, I woke up at the bottom of the stairs in my bedroom without even any recollection of leaving my bed, let alone the seizure. In fact, it wasn't until much later that I even realised that I had had a seizure, and I just that I must have fainted or something. It took me a long time to get seizure control, and my friends had to be trained in administering buccal medazolam as my seizures were long and severe. I was so scared, especially because during the holidays I lived alone in a house in the middle of nowhere.

Do you get auras? I found some comfort in that - once I had learnt to recognise them, I knew to put myself in a safe situation. Sometimes I was even able to tell people I was going to have one.

Epilepsy is scary, because you are not in control of what is happening to you, you can't prevent it and you don't always know when they are going to happen. I found that if. I concentrated on the things that I could do - getting plenty of sleep, keeping stress levels low, eating and drinking well etc - which made me feel better about the things I couldn't control.

Getting control was a long and hard process for me. I really hope that when you go back to the neuro, they will be able to help you find the right strengths and combinations of meds. I think this will make a world of difference. Don't give up, and don't let it stop you from doing the things that you enjoy xxx


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No, I don't have auras. I suddenly wake up to find myself on the floor and I have to piece together what happened. Sometimes I make it back to my bed and it is only the blinding headache that explains what happened. My first TC seizure I was in class, I remember waking up and telling the paramedic I didn't need oxygen so f*** off. My best friend hates me to this day for making him so worried! Usually I break something going down as well (I broke my laptop once ). My ex used to just leave me on the floor (yeah, no surprise that relationship didn't work out)!

I've been trying on the meds for so long, I am so tired. It has been more than a decade and I am still not on the right combination. As my 'usual' seizures are absence seizures it also makes it very difficult for me to give an answer when the neuro asks how many I have been having, which doesn't help.

I work in finance and stress levels and eating properly isn't always an option for me. I get to month end and there isn't a person in the place who doesn't feel like a nutter and just wants to get home and crash into bed without even making food. I had to leave my job because it was just killing me and I am so scared that I won't be able to work in finance; I have two degrees in accounting and just don't know how to do anything else.

It doesn't stop me doing what I enjoy, I am just getting so nervous. Last time I had a TC I was holding the kettle (I was making a bath and my heating wasn't working properly). Ten minutes later I would have been in the bath and I don't know what would have happened.

(Original post by OU Student)
I don't really think this is something you can relax over due to how unpredictable it is.

I had undiagnosed nocturnal epilepsy as a child. I remember one night not being able to sleep. I then woke up and was told I'd had a seizure. Mum only knew because my sister & I were sharing a room, I'd fallen out of bed and my sister couldn't get back in. (we had bunk beds then)

My dad has epilepsy and he's lucky that his is controlled fully and he's not had a seizure in 9 years.
I am very happy for your dad Is the epilepsy in your family hereditary? I think it is something pathetic like 30% of people with epilepsy get full control. I have tried learning to drive twice.

I have come to terms with the fact I have epilepsy. It has been so long. It took a lot for me to get where I am, but now it seems like I am starting from the beginning.

(Original post by River85)
How many times do you get a headache (without then having a seizure)? Is it not sometimes worth reminding yourself that sometimes it often is just a headache and to try and relax? Easier said than done, I know.

There is a technique called mindfullness that can be used when feeling stressed or anxious. It's about being mindful of what is happening in the moment, including our thoughts, allowing us to better manage them

http://bemindful.co.uk/about-mindfulness/

I actually attended an Epilepsy Action seminar last month (I was volunteering for them at the event) and the final session was on mindfulness and how it can be used to reduce anxiety and stress (and therefore, potentially, seizures). Very interesting.

I don't know; I very rarely have TC seizures, but I don't know how many absence seizures I have. Without control I can have a dozen an hour easily so I don't know what is happening now. I think I sometimes give myself headaches thinking about it!

That's a great link, thank you I will try that. You are so helpful when it comes to epilepsy! I also have mental illness and panic attacks so it will hopefully really help.

How often do those seminars take place, I might try and go to the next one.

Thanks all
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Tiger Rag
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(Original post by Anonymous)
I am very happy for your dad Is the epilepsy in your family hereditary? I think it is something pathetic like 30% of people with epilepsy get full control. I have tried learning to drive twice.

I have come to terms with the fact I have epilepsy. It has been so long. It took a lot for me to get where I am, but now it seems like I am starting from the beginning.
Thanks. It's not hereditary, no. I had it because of another brain condition I have (I have part of my brain missing and have a cyst there) and dad has it because of a head injury. The doctors are now unable to tell me whether I still have epilepsy. If I do, at least I've stopped vomiting.

The doctors want dad to come off his medication, which he doesn't want. It means he can't drive for a certain amount of time.

Hope all goes well for you.
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