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How to cope with epilepsy?

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Pixiecookie

11/12/2017 at 01:07

Pixiecookie

Last activity on 20/10/2023 at 00:40

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3 comments posted | 2 in the Epilepsy Forum

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how you live and cope with this

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lesmal

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Edited on 15/05/2020 at 14:28

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lesmal

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Last activity on 18/12/2024 at 16:00

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Hi Pixiecookie,

Epilepsy is a complex condition, and it depends on what types of seizures one has and also how it affects the individual on a daily basis.

I have had epilepsy now for 46 years and found that acceptance is the most important way to live with one's epilepsy/condition. Once you have accepted the fact you have epilepsy, then you must have patience and understanding of it.

We all have our good and bad days, but live one day at a time... Am always here if you need to chat to find out more!

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Les

How to cope with epilepsy? https://www.carenity.co.uk/forum/epilepsy/living-with-epilepsy/how-to-cope-with-epilepsy-2095 2018-04-20 18:48:53

Sunshine5

07/04/2020 at 18:46

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Sunshine5

Last activity on 15/12/2024 at 15:13

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63 comments posted | 23 in the Epilepsy Forum

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I too have had epilepsy since birth (40 years in August 2020). For me I know no difference of living a life without epilepsy to then living a life with it.

I suffer from Left Temporal Lobe epilepsy and it affects memory, information retention, poor cognition and difficulties in following instructions.

I had brain surgery 8 years ago this month to resect a benign tumour. I had several seizures every single day pre operation, despite taking medication without missing a dose.

The operation has lessened my seizures to once a week but I am now more anxious as I feel that I need to prove myself. As I'm not seizure free, I can't pretend that nothing is wrong with me. I still can't drive, have lostmy job on incapability and feel maybe I'm being selfish here. Prior to my op, my anxiety was having a seizure and drawing attention to myself.

That is gone only to be replaced with another set of anxieties, which is I gather common among most adults with responsibility.

Married , no children due to infertility on my part. Called Azoospermia with evidence connecting Epilim and the seizure condition I suffer from.

I worked exceptionally hard to go to University to do a degree. Was given extra time in exams to compensate for the seizures.

Little did I know that academic success for my condition doesn't lead to career success.

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syusuf

How to cope with epilepsy? https://www.carenity.co.uk/forum/epilepsy/living-with-epilepsy/how-to-cope-with-epilepsy-2095 2020-04-07 18:46:44

lesmal

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08/04/2020 at 14:21

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lesmal

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Last activity on 18/12/2024 at 16:00

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I've reached the 46 year mark now with epilepsy, but won't give up the fight to find a cure. After brain aneurysm surgery last year my epilepsy medication was changed. It lasted 8 months but I just couldn't take all the side effects so requested another change.

I'm in a process of weaning off one medication, taking a new one and trying to control the dosages at the same time. 12 weeks of madness, but must admit, it got my mathematics and calculations in order!

We all face struggles, one day is good, one is bad but remember stay strong and have the determination to carry on!

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Les

How to cope with epilepsy? https://www.carenity.co.uk/forum/epilepsy/living-with-epilepsy/how-to-cope-with-epilepsy-2095 2020-04-08 14:21:56

EPandMe

13/05/2020 at 21:07

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EPandMe

Last activity on 09/12/2022 at 12:20

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10 comments posted | 8 in the Epilepsy Forum

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@lesmal‍ I agree, I think one of the first steps to coping, like in many things, is acceptance. Epilepsy can put restrictions on certain aspects of your life, but it opens so many doors to other things. You have to accept the bad to also accept the good.

How to cope with epilepsy? https://www.carenity.co.uk/forum/epilepsy/living-with-epilepsy/how-to-cope-with-epilepsy-2095 2020-05-13 21:07:44

lesmal

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15/05/2020 at 14:17

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lesmal

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@EPandMe‍ Acceptance is the key to coping with epilepsy as you stated.

Its been a long journey, but has given me more strength and determination to carry on and support others. So many memories are still vivid, but my passion is to daily advocate and educate people with epilepsy... I love being a member of other epilepsy organisations and enjoy doing research on Google to broaden my knowledge.

Stay strong and glad to have another person on the site with epilepsy!

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Les

How to cope with epilepsy? https://www.carenity.co.uk/forum/epilepsy/living-with-epilepsy/how-to-cope-with-epilepsy-2095 2020-05-15 14:17:22

Kitty78

15/06/2020 at 21:43

Kitty78

Last activity on 15/06/2020 at 20:53

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2 comments posted | 2 in the Epilepsy Forum

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Since I was diagnosed with epilepsy in November of 2002, I have just got on with it. As my partner at the time didn't really care, neither has anyone since then, now I have to take methotrexate for rhymatiod arthritis & am on sertilin for depression and anxiety high dose. But I live alone and fell over couple of times 2 weeks ago and now I'm scared of leaving my house to go get bit of shopping incase I fall over again

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Katrina davis

How to cope with epilepsy? https://www.carenity.co.uk/forum/epilepsy/living-with-epilepsy/how-to-cope-with-epilepsy-2095 2020-06-15 21:43:13

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Sunshine5

14/09/2023 at 17:51

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Last activity on 15/12/2024 at 15:13

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@Kitty78 I have had epilepsy for 43 years symptoms noticed at 4 months by mother but diagnosed aged 4 years. I had intractable epilepsy until 2012, and also multi anti epileptic drug resistance seizures. I had temporal resection of a benign tumour in April 2012. Seizures dropped with medication post of from 80 to 140 absences to 5 seizures a month.

I feel that due to my increased levels of stress, confusion etc my wife is more impatient. Financially we are not struggling but losing my job has worsened our marriage. However, even when I worked full time before my operation we still had problems. I have had 9 years seeing a Neuropsychologist and feel our lives are empty and she has ( in my opinion no feelings for me). I have told her 10 years ago 5 years after marriage that she can end it if shew wants as well as after my infertility diagnosis. I cant father children, something that is not that common among males. Those that have these issues have low fertility and can undergo IVF.

I feel very lonely since Covid and even though I secured a cleaning job, its only 6 hours a week so my wife and I survive on her part time wages, Carers Allowance and my PIP. DWP found that they overpaid me and my Universal Credit stopped ;ast year. i now owe K16, that £200 will be deducted a month from my enhanced PIP for the next 7 years since lase October.

People with terminal illnesses are always penalised by the state and even more so now as the government are forcing more sick people into doing more hours.

I do physical activities like going to the gym and walking but nothing more than that. No friends and feel rather trapped and feel am a burden on my wife giving her hell on earth.

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syusuf

How to cope with epilepsy? https://www.carenity.co.uk/forum/epilepsy/living-with-epilepsy/how-to-cope-with-epilepsy-2095 2023-09-14 17:51:27

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hockeygoalie

14/08/2020 at 10:41

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hockeygoalie

Last activity on 10/08/2024 at 19:25

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I was diagnosed as a child 43years ago I have tried to get the best jobs I can but mention a condition an 90% of my applications hit the bin i can drive and do most things played ice hockey in goals for 30 years and played golf at a reasonable level the condition has held me back as in career choices but come in handy when unemployed as we qualify as disabled workers if we want to use that gives us more retraining options easily

How to cope with epilepsy? https://www.carenity.co.uk/forum/epilepsy/living-with-epilepsy/how-to-cope-with-epilepsy-2095 2020-08-14 10:41:32

lesmal

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29/12/2020 at 10:13

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lesmal

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Last activity on 18/12/2024 at 16:00

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I've been on Topiramate for over 12 weeks now and had a seizure in a shopping centre in November which sparked a teleconsultation with my Neurologist on 15th December. After 4 medications later, he now says he wants to do 5 day EEG video telemetry for further investigation. I'm currently waiting for a copy of a letter to my GP regarding the next step.

Has anyone had this done and if so, was it successful?

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Les

How to cope with epilepsy? https://www.carenity.co.uk/forum/epilepsy/living-with-epilepsy/how-to-cope-with-epilepsy-2095 2020-12-29 10:13:48

lesmal

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04/01/2021 at 16:16

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lesmal

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Last activity on 18/12/2024 at 16:00

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1,434 comments posted | 78 in the Epilepsy Forum

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Just received my letter from the Neurologist copied to my GP. Now it means a reduction in dosage by 25mg Topiramate every 2 weeks until required dosage is reached for more testing.

I still have a query which the Neurologist won't answer; hormones. I am hypothyroid and take Levothyroxine 75mcg daily but notice a seizure pattern every 2/3 weeks.

Any other ladies find that they have this pattern?

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Les

How to cope with epilepsy? https://www.carenity.co.uk/forum/epilepsy/living-with-epilepsy/how-to-cope-with-epilepsy-2095 2021-01-04 16:16:37

EPandMe

17/03/2021 at 14:56

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EPandMe

Last activity on 09/12/2022 at 12:20

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@lesmal Sorry I've been away from the site for a bit. How are you doing with your new dosage?

How to cope with epilepsy? https://www.carenity.co.uk/forum/epilepsy/living-with-epilepsy/how-to-cope-with-epilepsy-2095 2021-03-17 14:56:36

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