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Epilepsy Research UK
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Quick Question For Those With Family Members/Close Friends With Epilepsy

Hi, My name is Jasmine and I am a 26-year-old student from Manchester.

I was diagnosed with Epilepsy when I was 17, I am currently studying for my Masters and for my dissertation I am creating a documentary - as the condition is obviously close to my heart, I decided to do it on Epilepsy.

The focus of the documentary is showing how it affects those around the individual with epilepsy (i.e. the parents, partners etc.), I have already interviewed my own family members to hear their perspective and will be including this in the documentary.

I was curious to hear more about people on this forum who are here because they have someone close to them with epilepsy and see what they go through or their main worries. Even hearing from those WITH epilepsy of any stand out experiences they've had with their family regarding the condition would be great.

Apologies for the long essay I just wanted to outline what my intentions are, I really want to make use of this uni project and create something useful that can actually help people and voice opinions.

If anyone can leave any relevant comments/input/advice below?

Thank you so much, this process of research has also been a learning curve for me and taught me a lot xx

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Hi Jasmine. Thinking is a great idea and I wish you good luck in your work. I was diagnosed with E some 25 years ago and, thankfully, my seizures are almost totally controlled by medication. Although it's had a big impact on my emotional health (and physical health to some extent), I managed to go to grad school and law school and have led a pretty "normal" life. (my family and friends would say there's nothing normal about me, but they mean it as a compliment!) ;). I've been with my life-partner for 15 years and am lucky to have someone who's supportive and understanding. Yet it took me many years to realize how my epilepsy affects him and our relationship. More broadly, how it has affected my career and abilities to manage life's many tasks (finance, planning, household, etc). At this point in my journey I can say that these "collateral effects" have been a far greater challenge and hindrance to living a full healthy life than the seizures themselves. And this is something I suspect most people with epilepsy can empathize with -- and something neurologists and other docs never mention. And so I find your thesis project compelling -- for you I'm sure, but also for many others out there who don't quite understand why they find life so challenging; why, despite solid success in some areas, their life is a mess in many others and their relationships are strained. Gaining a more holistic understanding of how this disease affects us and those in our orbit is essential to leading a healthy and fulfilling life. Part of that learning comes from honest inquiry and conversation with the people in our lives. Your docu project can shed light on just how important this learning is.

I'm sure my partner would have much to offer in terms of his experience with me and the impact of my epilepsy. (I haven't spoken with him about this so I can't commit on his behalf). I am happy to share with you further if you like and am open to your inquiries anytime.

With best regards,

John Thompson

Philadelphia, PA USA

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Hi John,

Thank you so much for your response, I have thoroughly enjoyed reading this, I must firstly say I admire anybody who studies hard, particularly in a field as complex as Law. I still live at home with my parents at the moment (student struggles!), so it's interesting and inspirational to me to hear from somebody with epilepsy of what life is like for them with managing certain life tasks that I haven't yet experienced.

You're completely correct, the advice neurologists/docs often offer is restricted to discussing the physical effects of epilepsy (i.e. the seizure, build up etc.), rather than the daily life struggles alongside it. Because of this lack of focus on the 'knock on effects' of epilepsy on daily life from professionals, it can often make you question if your daily struggles are 'normal' and they can consume your life. If these daily struggles were touched upon more from professionals, I feel it would minimise relationship struggles too (I was quite stubborn and angry with my parents for a long time, not understanding the condition affects them too and that they worry).

This is why I think internet forums/groups are of great comfort to those with not only epilepsy, but any medical condition. Sometimes you need realism - real advice from those who have experienced epilepsy affecting their lives, whether it be a family member or themselves - which is what I want to convey in my doc.

For example, I scared the living daylights out of my dad when he saw me have my first seizure - I went blue so he thought I was dying (sounds super dramatic!). He had only ever seen seizures as represented as dropping down and 'fitting' (on TV etc.) but after witnessing more he came to recognise what was 'normal' during my seizures and offered advice to my boyfriend to prepare him for witnessing me have a seizure. When I interviewed my boyfriend about how he felt seeing me have a seizure for the first time, he replied "I saw you go blue, which is something that would have scared me, but your dad warned me and told me it is 'normal' for you."

Shows how communication can make a difference, as you say. It feels incredible when a partner truly accepts you and is genuinely supportive. I am happy for you that you've had that support for a long time, and for a long time to come - strong relationships are a huge comfort and support structure for these daily struggles.

It would definitely be interesting to hear what your partner has to say directly!

- However, even if he chooses not to share his experience, I feel I have learnt a hell of a lot from your response and truly appreciate it. :)

(huge essay, congrats if you make it to the end!)

Jasmine x

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I'd be happy to chat if you want to DM me?

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I have DM'ed you :) Thank you so much! x

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And me you back :) x

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Hi JasmineEllen

Iam new to this site

Iam also from Manchester and have suffered from eplipsy since 2001 but I have had a fit in my sleep & have always wake up in a&e but it dose effect you physically and mentally!

I remember the first time I had my younger sister was sleeping with me at the time & she was only 8/9yrs old at the time so you can imagine how scared she was anyway I woke up the next day in hospital stayed in a few days. Over the year they have tried different medication but nothing kept it under control it was that bad when I was pregnant with my girl at 27 weeks I was 4/5 fits a day in the end they had to deliver the baby thank God she's ok & now is 11 I high school...

This year Salford royal changed my medication again 😂 but thanks got I have been fit free since 9 months now!

But tell you one thing I wouldn't have got through this with out my beautiful family and hubby xxx ☺

Good luck with your master xx

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Hey!

Nice to speak to you! - How wonderful that you have a lovely healthy daughter though - pregnancy isn't something I am interested in now but it is something I have thought about how my epilepsy will affect it etc. So it's amazing to hear it shouldn't restrict me.

Ah what medication are you on now? I'm on Keppra and Lamotrigine! Salford Royal is where my neurologist is also, it's just annoying how trial and error epilepsy medication is but I am glad you've found something that works for you, you've clearly come a long way from how many you were having when you were pregnant.

Has your husband been a huge support then, is he used to your seizures now? My boyfriend adapted really quickly and he knows exactly what to do if he sees one coming on/me go into seizure...but he was a bit taken aback the first time he saw me have one! It helps so much to mentally relax your mind when you have a supportive family unit around you. Lovely to hear that you have that support.

It's just a massive help and inspiration to hear how the people around those with epilepsy have helped their family members who have epilepsy.

Thank you so much xxx

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Hi JasmineEllen

I was on lamotrigine and it worked for a good few years then my eplipsy came back & they put me on keppra that was gave me rash everywhere on my body and my fits where just getting worse so in the end Salford royal put me on Levetiracetam & zonisamida just just before I go to bed!

I think my daughter was amazing with it because I had told her what to do if I had I fit in front of her she would just follow the instructions she wrote on the fridge & on her bedroom cupboard... bless my husband would do all the panicking at first when we got married but he adjusted well in the end...

Friends & family make world of difference xx

Good luck with everything

Anees xx

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I'm so happy for you that you've been fit free for 9 months, that's amazing! Sometimes it takes testing alllll the bad stuff first before finding a medication that works well for you!

It's great to hear snippets of your experiences, particularly with how your daughter reacted too - it must be a shock for anyone that age to witness a seizure, I even say now I wouldn't know what to do if somebody had a seizure in front of me as I've never seen one in person, just had them! Sounds like a strong and sensible family unit you have :)

Thank you again for your time, I wish you the best and fingers crossed you'll continue to be seizure free infinitely now!

*Also fab to speak to somebody who's also from Manchester/goes to Salford Royal - feels like I have lots in common, haha.

Jasmine xxx

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Hi Jasmine, I'm new here, my daughter has just been diagnosed and she is 8 months, we are going through some very raw and scary emotions if you'd like to know anything please feel free to DM me :)

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Hi took 3 years for the doctors to believe my daughter was having nocturnal seizures, the neurologist said eeg and 24 hour eeg didn’t show enough evidence. She had a tonic clinic seizure in the day in June and ended up in hospital as she had Todd’s parathesis and looked like she’d had a stroke, it was awful. The only good thing was they started her on meds . I have noticed a change in her over the last year, when u ask her a question it’s like a time delay before she replies. With the meds she is tired all the time and could sleep for England lol. She has trouble concentrating at school and feels she is falling behind. It is strange her test score for science is A* but her English has dropped to C. Sorry for long essay, dm me if u need any more info x

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Hi,

I think this is very worthwhile as the focus in medicine has always seemed to be treatment and management of the symptoms without necessarily looking at overall quality of life issues and mitigation through changes in behaviour and environment. My wife was diagnosed with epilepsy after the birth of our first child 17 years ago and it became progressively worse before treatment. We postponed treatment as long as possible because she became pregnant again (we opted for a home birth to reduce stress against medical advice) and we were concerned about the risk of birth defects. Although I had always blamed myself in part for having a lifestyle impact upon my wife which worsened the seizures we found out recently (within the last two years) that she had been born with a brain lesion and that the epilepsy had always been present but misdiagnosed. The impact upon the family (and on the children in seeing seizures as youngsters), on my wife’s ability to work, drive, handle stress and numerous other factors is something that needs to be recognised and supported. Without recognition these issues can lead to other problems that build and have underlying causes that are actually relatively addressable. We attend a support group of volunteers that has been far more helpful than much of the primary support - the greatest struggle seems to be for people with epilepsy a lack of understanding of their condition and a lack of a support network that can explain and share what it means to them. I would be very happy to assist and participate further in your work. Regards,

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I apologise for the delay as I have only just been able to log back into my account for some reason I had problems!

I have all my interviews needed for this project, but I can include parts of what you have stated in this text in my accompanying report that I submit alongside the doc, so thank you so much!

I am also hoping to create a more indepth piece on epilepsy after my studies, so keeping informed with others experiences/having contacts will be great so I may contact you in the near future too :)

x

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Hi Jasmine I was diagnosed with epilepsy (myoclonic jerks) 36 years ago when I was just 16 they also call it flying cornflake syndrome as it usually happens eatly mornings . I am the youngest of 10 and epilepsy is very strong in my family i have 5 sisters and 4 brothers, out of the 6 of us girls 4 of us have epilepsy and me eldest brother has it too. Unfortunately 2 of sisters that had epilepsy have now died (1 from undiagnosed coronary disease at yhe age of 54 her epilepsy was not controlled, my other sister died of natural causes although she was only 48 they could not find a cause of death so put it down to natural, my brother was in his 60's and unfortunately died from cancer his epilepsy was controlled). I do have the full seizures now i believe this is because when i was first diagnosed i was in denial and refused to take my medication (i know it was silly) my triggers are stress and tiredness I also suffered from depression I donreally know how I pulled through it as I didn't talk to my family much and my parents were so used to it, it was normal for them.

When I was 23 I went back to see my consultant who helped me a great deal and I finally began to accept my condition and take my medication regurlarly. I have 2 children aged 16 and 11 my daughter the 16 year old was diagnosed with epilepsy 2 years ago and is currently taking lamotrigine which is controlling her seizures. I am on Keppra 4500mg per day and have been seizure free since 2012.

I hope this helps you.

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That's been a massive help. I will include all the experiences others have written to me in my report that goes alongside my documentary, showing research and the vast experiences people have told me just shows how big of an issue this is and how overlooked it is!

Thank you for your input, really appreciated.

(apologies for the delay in replying!)

x

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Hello Jasmine, I've only just read your post. If you are still looking for subjects, I am a parent of a 14.5 year old daughter who has drug resistant epilepsy and has been on the ketogenic diet for over five years. I am happy to help if you still need people's experiences. Please DM me. Many thanks and good luck.

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I have all my interview content for this project itself, but I may be in touch in the near future as I have mentioned in the rest of this thread, I hope to maybe do another more indepth piece on epilepsy so I am always interested in staying in touch with people to hear their stories so if you would be up for that, it's a possibility :)

Thank you!

(apologies for the delay in replying too)

x

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Thank you all for your input and sharing your experiences with me - this project has been a massive eye opener for me and made me realise - as somebody with epilepsy who often lets the condition get me down/feel the impact it has on my life - that it definitely isn't just me it affects.

The families/loved ones of somebody with epilepsy deserve a lot of understanding and credit and I have a lot of respect for you all. And to those with epilepsy who have contributed, it's been really interesting hearing how you feel about how you've seen your epilepsy affect your own loved ones too. I hope the experiences you've all shared on here too provide some support for one another as well that you can get in touch with each other too, support always helps.

xx

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