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Epilepsy Action
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Diagnosis

I was diagnosed almost 6 months ago and at first I was scared of going out or even been left at home on my own. I got over that and my meds are still not where they should be but this week I just can't cope I feel so down its like I no longer feel like me a I'm never sure whether I'm going to be crying or angry or just seriously sad I thought Christmas would help but it came and went and I don't know when its going to stop.I wondered how other people coped and if they have any tips that would help

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Apprehension plays a big role in epilepsy. With such a case it does take some extra time to bring the meds to the correct doss in order for it to ease the issue.

It also includes the lack of stability with the mood, resulting with such emotional reactions.

Your brain is currently in the state of adjusting and I know for sure how it feels too, so don’t feel alone.

Christmas may of decreased the emotion for the time do to there being much more stimulation with the neurons in the brain.

I have been through what you are going through. You are at the difficult part but no question will get through it. Plus feel better as time goes on.

Just take it a day at a time. What I did was write down to remember how my day has been, then after the next day of what I have written down I have noticed my state becoming better, not worse from what was written. Always look for the better. 😊

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Are you on your own or do you have a partner or family? Have you felt able to share news of your condition with them or with friends? For me, it was the sharing that helped more than anything else. The first time I had a seizure was in front of my wife, and the doctorin And E told her that her husband was epileptic. She told me - the doctor never said anything! It took me a while to,say anything to people at work (this was 1980) and we kept it from the kids for a long time after they were born. But because she knew I was able to cope better. And for what it’s worth, last summer a friend up the road w as diagnosed with epilepsy at the age of 70 - he is 15 months older than me. He and his wife were unaahppy about his going out on his own, but as I have got older I have become open about my condition and so they phoned me up. Long chats, and if he wanted to go up to the High Street we would go up together, and have a coffee there, make a trip,of it. Now he goes out on his own. I suppose all I am saying as I drivel on is, be prepared to share your condition with others, ask them to go out for a walk with you if you need to pop out for something, make a bit of an outing of it. Things will get better, but don’t think you have to do it all on your own. Look on the Epilepsy Action website - there may be a “coffee and chat” group locally with people there who could be if use.

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I’m glad to see you’ve heard from others on this platform, as sharing information and experiences can be a good idea. Can I just check you also know about our other services?

We have our local groups, including coffee & chat groups epilepsy.org.uk/involved/br... We have our forum4e online community forum.epilepsy.org.uk/, and we are on facebook facebook.com/epilepsyaction and twitter twitter.com/epilepsyaction.

Finally, if it will help to contact us please feel free to contact our helpline team. You can either email helpline@epilepsy.org.uk or phone the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Thursday 8.30am until 8.00pm, Friday 8.30am until 4.30pm and Saturday 10.00am until 4.00pm.

Regards

Jess

Epilepsy Action Helpline Team

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Thank you all so much for your replies I am going to my local shop on my own and I have tried to develop a system it's only 20 minutes there and back I am still very unsteady but some days my body veers to the left and some days to the right so I pick which side of the road is best to walk on. On the days I'm all over the place if it's really bad my daughter comes with me. I think I've just totally lost my confidence and I get very tired very quickly.I don't really have anyone to talk to so I've decided this has to be done so I'm going with the tortoise slow but sure I have had my meds changed again so hopefully this will help actually not changed just the dosage I think its hard not knowing what each day is going to bring and I've gotten into a place where I don't care if I don't do any housework or anything else I'm not houseproud but while it looks lived in I always kept it clean. So I'm hoping for maybe a little bit every day and see what the day brings. I do have a husband but he has COPD my daughter has MS and my son has ASPERGERS OCD and severe anxiety so if for no other reason I have to try and get back out there. Sorry for waffling on but sometimes if feels good just to write it down so once again thank you.

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