Thank you to everyone who helped raise epilepsy awareness on Purple Day, Sunday 26 March 2017.
How does epilepsy make you feel?
Six out of 10 people with epilepsy have experienced feelings of loneliness since being diagnosed with the condition, according to our 2017 Purple Poll.
The poll asked over 1,000 of you how having epilepsy affected your life, other than seizures. Many of you said you have experienced feelings of stress, anxiety and low mood since you developed epilepsy. Over half of you said you had felt isolated.
It doesn’t have to be this way.
Purple Day is a chance to work together to change this.
Please show your support for people affected by epilepsy; people like Caz, Stacey and her family and Freema’s niece. Wear your purple wristband, talk to people about epilepsy and share stories on social media using the hashtag #purpleday.
If you can, please donate £3 to Epilepsy Action by texting PURPLE to 70300.
For the latest purple info, follow us on Twitter and Facebook now!
If you have epilepsy and have experienced any of these feelings, Epilepsy Action is here to help. Contact the Epilepsy Action helpline or find your nearest support group.
It doesn't have to be this way...
Text PURPLE to 70300 to donate £3 today and help people living with epilepsy.
Text PURPLE to 70300
UK only. Epilepsy Action will receive 100% of your donation, texts will cost £3 plus your standard network rate. T&C apply.
Comments: read the 17 comments or add yours
Comments
For the first time in forty years I've been talking openly about my epilepsy http://www.frenchvillagediaries.com/2016/03/purple-day-2016-talking-abou...
I've joined Epilepsy Ireland. They'd the International Epilepsy Day 9 Feb, run by the International Bureau of Epilepsy. Is that different from the Purple Day
Hi Gail,
International Epilepsy Day (the second Monday in February) is a new awareness day organised by the International Bureau for Epilepsy and International League Against Epilepsy. The day is still in its infancy, with this year’s the second of its kind. Purple Day (26 March every year) is a grassroots movement started by schoolgirl Cassidy Megan in Canada in 2008. It has since grown in popularity to become the global awareness day for epilepsy, celebrated by people with the condition across the world.
Hope that helps.
Had petite mals all my life and grand mals for almost 20 years.I recently had 3 seizures in one day resulting in a broken ankle, a night in hospital and as I'm a lone parent, my son who turned 8 yesterday, has to stay with friends and occasionally in temporary foster care. The worst thing about my epilepsy is not the seizures so much but it's the effect on my son who has had to call 999 for me since he was 5. It's my job to look after him and worry about him, not the other way around
Hi my name is jen and I have had Eplilepsy all my life since the age of 11months of age to present day and over the years it has been up and down but the last couple of years have really been a few tough ones with the epilepsy as I have a few grand mal a couple of months part and then last September I started having drop seizures and I had 3 in space of a week one after another so I am just hoping now on more meds I will be ok again
My husband who was the person who actually had epilepsy passed away on April 5th 2016. But I know that his diagnosis of epilepsy following a stroke four years ago was a source of great anxiety and stress for him.He had his first heart attack at age 36 and went onto have 33rd. But it was the epilepsy that really knocked him for six' he felt out of control and not being able to drive meant he was trapped virtually in the house since walking distances was a problem because of the heart problems. I feel that he gave up a little and was quite depressed. Then developing Parkinsonism and Lewy Body Dementia. Happily his med helped with the epilepsy and he was seizure free for his last year. But he suffered a lot. Carry on the good work it certainly helped me to understand the condition and helped me to help him.
Hi I'm 34 and I've had epilepsy since the age of 3. With medication I now only have several grand mals a quarter and numerous petite mals a month. As a teenager and child I didn't really tell anyone I felt it was something to hide, however now I don't. I'm sure like most people it comes up when people ask "why don't you drive?" then I explain them why. I don't feel it has held me back. I still played sports, went to university, went travelling, became a homeowner and work full time. I know I have been very fortunate. I also learnt to listen and understand my own body and recognise signs and triggers. There are certain things that trigger my own grand mals and I try to minimise these when possible. I am also fortunate that most times I get an aura before to give enough time to ensure I don't injure myself. This has helped a great deal. This could not have achieved without the help of the epileptic specialist nurse and neurologist who monitor medications over the years. I've been very lucky.
I have had epilepsy for forty seven years, probably about four hundred seizures. Juvenile myoclonic epilepsy. Through medical research and improvement in medication life has improved somewhat, over the years, now fully retired and now able to get through to fellow sufferers via contact groups relevant epileptic specialist nurses and neurologist doctors and relevant web sites and compare symptoms and worries, some of the side effects of the various medications and graphic descriptions of some of my colorful seizures, life is much easier now, less stress leading to only having four seizures in the last four years, this is now probably the happiest time in my sixty one years.
I've suffered with petit mal and the rare grand mal from childhood until mid 30s. Thankfully I had a doctor when working in Poland who put me on different medicine and saw me regularly instead of in the UK when my consultant's registrars would pick up my file and start from the beginning again. I feel that a more consistent in seeing the same doctor would help people. Now I don't have fits but I have constant headaches as I was prescribed Clonazapam when I was a teenager and I suffered awful withdrawal symptoms when coming off them. It took me 7 years to come off 2 x 2mg tablets. I feel frustrated that I have this pain each day, cannot drive due to my headaches and I wish I could go back to having the petit mal ones as I feel that by now new tablets would have stopped them. I could think clearly with those and I was much more cheerful etc - most people understand absences but they don't understand constant headaches that make you irritable. I wish I'd never been told to come off them.
Epilespy makes me feel very alone. Family have no patience or time for me. I am alone and it is a unbearable life.
I started with epilepsy two years ago it was a shock but dealing with it now
I had my first Epilepsy Seizure when i was 22 years old having my first seizure at work on the phone which surprised us all. Having it investigated i found out that it is Mild Epilepsy with a very small area of damage to the left side of my brain which is called Temporal Lobe Syndrome. They have found many types of medication to control people will the full Epilepsy but theres not many people with the small area of Temporal Lobe Syndrome so they have struggled to find the correct medication to control mine. I am now 32 this year and i am still having the seizures once a week which is when i space out for just over 1 minute feeling confused not knowing what time in the day it is and i feel i just don't know what i am doing? Some times at home I've gone to bed in the day time thinking its night time. In respect of the jobs/employment i was unfortunately made redundant from the job i had been working in where i had my first seizure and they were aware about my mild epilepsy but the next job when they asked if i had any disabilities or health issues i had to say "No" as some companies can be judgmental and not employ me because of this and this was evidenced when one company offered me the job and unfortunately over 1 year working there as soon as i had some seizure's sitting at my desk (not affecting my work) they realised i had mental health problems so i was asked to attend their meeting room by their Human Resource Manager where they made me an offer of money to leave their company which i refused. They then typed a letter to me saying they were unhappy with my performance of work and if it doesn't improve within 3 months then i would have to leave which was clearly some other method of them trying to get rid of me because of my Epilepsy. I ended up choosing to contact "The Citizens Advice Bureau" who advised me theres nothing i can do so i should just accept their offer and leave the company as i clearly wasn't happy so they managed to contact them and get this resolved. I had to agree to sign a contact to prevent me from telling any of their employees about what they have just done which i agreed to sign. I have also been judged by another company before them as well so there are discriminating businesses out there so i can only get employment by not advising them about my Epilepsy and its a case of hopefully finding one which won't judge me and would still be happy to have me as an Employee understanding that one day hopefully it will be able to be controlled. This has all put my life on hold, prevented me from getting my own property and I've needed the support of my family getting me through all these situations. I have suffered a lot of stress but i still remain strong due to my family being there for me.
Dear Daniel
It must have been a challenge to find yourself in this situation. It is positive to hear that you are trying to stay strong throughout it though.
Firstly, as you are still having some seizures you may find it useful to talk to your epilepsy doctor or nurse. It is possible that a review of your treatment may lead to you becoming seizure free. If you don’t currently see an epilepsy doctor or nurse, you can ask your GP to refer you.
We hear a wide range of work related experiences from people who have epilepsy. As a person who has epilepsy you should not be treated less fairly at work than someone who does not have it. This is because epilepsy is a protected characteristic under the equality laws.
When looking for work you do not have to automatically tell an employer about your epilepsy on your application form. You should only be asked medical questions if it is relates to the essential tasks of a job, or if you need reasonable adjustments to be made so you can attend the interview.
Also, when you have been offered the job, if you feel your epilepsy will not affect your ability to do the job safely and effectively then you may not need to tell your employer about it. Our work booklet tells you more about this.
When you do find your next job, if you do choose to let them know, you may find it helpful to tell them about our epilepsy awareness training. This may help your employer and colleagues to learn more about epilepsy and to explore any questions they may have. You may even be able to apply for a grant from Access to Work to pay for this.
I can hear though that all of this has caused you a lot of stress. I have included a link to our stress information too as this may help you to manage the way stress affects you, and so reduce the impact it may have on your epilepsy.
I hope that you find an understanding employer soon. If we can be of any more help, please feel free to get in touch with us again.
Karen
Epilepsy Action Advice & Information Team
Oh wow. I've always been pretty okay with my epilepsy but it truly makes you feel alone. Didnt know purple day existed. God bless freema for the awareness
I had two seizures when i was 15 but the NHS wasn't sure what was wrong even with EEG and MRI results so nothing was done i was 32 in October 2016 and had 2 more seizures in April 2017 when they diagnosed me with epilepsy i was put straight on to keppra 500mg twice a day and i have had the worse part of the side effects from the medication anger angsiety short term memory loss depression and it's the worst possible outcome my family are the ones suffering for it all and the NHS don't seem to either know what to do about it or aren't interested about it .
It has taken them almost a year to do something about it and the only answer they have is antidepressants with changing me from keppra to lamotrogine and as the neurologist has said it makes it highly likely i will have another seizure during the change over my family are under as much stress as i am and we have no from of support from anyone not even my parents who should be at least trying to provide support
Hi Chaz
It sounds like things have been tough for you.
Unfortunately Keppra can have the side-effects you mentioned. I am glad to hear it has finally been possible to get the medicine changed to lamotrigine.
The change-over needs to be done slowly and carefully. And it can be difficult to get a balance between having too much or too little epilepsy medicine in your system during this time. But I am slightly surprised if the neurologist has said it is highly likely you will have a seizure during this time. You would normally expect them to have thought about that when they decided how you should change from Keppra to lamotrigine. You may want to talk to your neurologist of epilepsy nurse about this to see if they think you could do the change with any fewer risks.
Worrying about the possibility of having another seizure is something that happens for many people with epilepsy. And for their families.
You might find our information on stress and on low mood useful for helping a bit with this. But hopefully how you feel should improve a lot with the change of medicine.
Your family may feel reassured by knowing you have done all that is possible to reduce the risk of you have further seizures, and of being as safe as possible if you do have one. So our information on possible seizure triggers and on safety may help with this.
Here are the different types of support we offer. In particular you may want to see if there is a coffee and chat group in your area. It can be really helpful talking to other people in a similar situation.
I really hope things get better for you soon.
Regards
Cherry
Epilepsy Action Helpline Team
Hi, both myself and my wife have had seizures all our lives both for different reasons, my wife's seizures started due to Meningitis at the age of 6 months where mine was due to high fever and head injury, I have around 10 per day all of which are grandmal and petimal and I can lose a day's memory and have injuries', but I just get on with things as normal as I can, my wife has both types but far fewer these days, but she has generalised brain atrophy because of either seizures or meningitis or medication, she has cognative imperment which affects her daily life and my life as I am also her carer, but she does look out for my safety we also have a dog that warns each of us about on coming seizures and no he has not been trained to do it, but the secret is his breed ( a Staffordshire bull terrier) and the have a natural empathy.
We are in our 50s now but never allow our seizures to take control of our lives completely.
Graham and Amanda