New to epilepsy/seizures.

[Pauley]

Hi I'd like to tell a bit of my story and grateful for any advice or feedback. I am a Community Mental Health nurse and driving is close to an essential requirement. I suffered a severe head injury around age 20. I'm now 49 and qualified as a nurse in 2005. I do have a long history of anxiety and depression dating back to at least 9/10 and plenty of trauma in my life. I used to manage with St Johns Wort but started anti depressants in late 2003. Earlier that year i'd noticed feeling like passing out while driving round corners in the country side. I attributed it to tiredness and had similar spells since. In 2014 I noticed I was having these same spells of overwhelming tiredness and tingling sensations in my head on the same stretches of road day after day and went to my GP thinking it may be something other than fatigue.

I stopped driving for a while but all tests came up with nothing (ear and neurological). I self referred to a Sleep service. The consultants said I could drive and so I started again. I had a full sleep study in November 2015 and at my outpatients in Feb 2016 I was informed I'd had a seizure during the sleep study.

It was a relief that something had been found that explained why I felt tired and drained all the time and had some strange experiences on waking and during my sleep. The episodes of overwhelming fatigue and depersonalisation during the daytime were focal seizures it would seem.

I've now had to stop driving and begun Epilim for about 7 days 200mg bd. I have had a noticeable side effect of being unable to sleep which has caused me to take time off work. I took me a few weeks to get my head round this life changing information. Going forward I am wondering if I should take step back from nursing as it is stressful and I feel worn out with battling depression and lack of restful sleep for possibly decades.

Has anyone else needed to come to terms with having seizures/epilepsy in their 40's as a new medical condition? Mine would seem to be a sleep/rem triggered seizures with day time focal type seizures. It must also have impacted on my mood and so a positive is that hopefully my mood and energy levels will be better once I'm successfully treated. I've been reading other posts and best wishes to all on the forum. 🐣

[Hidden]

Hi Pauley Im sorry youre not well.Im 50 and I've had similar to yourself.I had a head injury in 2016 and developed epilepsy similar to yours in April 2015. I am no longer driving since being diagnosed with epilepsy.I too have had depression on and off- mine over the last ten years.

My biggest hurdle has been not being able to work since the head injury,fatigue and now not being able to drive adding to my mood situation.I try to stay positive but it's hard.If you can still work I would.Try to make the best of a bad situation.I have to tell myself that there are people much worse when I feel sorry for myself

[Hidden in reply to Hidden]

Sorry my head injury was 2013- my brain not making sense as usual!

[Pauley in reply to Hidden]

Hi Karen thanks for getting in touch. I'm hopeful of working but still coming to terms with the whole package. Yes one thing I find helpful for is to think of what I can look forward too each day as I get up. Hopefully not driving is only temporary 🐣

[Hidden in reply to Pauley]

Sounds like good positive thinking.Start as you mean to go on

[Hidden]

Hi, sorry to hear the seizures have hit in your 40s. I have had epilepsy since the age of 16 (tonic clonic) and still 42 years later have seizures. I had a car accident at the age of 17 (a seizure whilst driving) and haven't driven since. I am now 58 years of age. It is not worth the risk driving as anything can happen and a seizure can come at any time. Yes, it is a bind relying on friends and family for lifts and transport, but safer in the long run. Regarding your employment, perhaps find a less stressful position other than nursing... Remember a seizure can happen whilst you are attending a patient in a time of their crisis, which could cause damage to both you and the patient. Everyone has their own thoughts and ideas, but I suggest you discuss with your Neurologist or Doctor further.

[Pauley in reply to Hidden]

Thanks Lesmal fortunately I've never lost consciousness while awake though I have had the focal type seizures while with patients. I am Thinking I've been pushing myself too hard, working as a nurse while contending with seizures in my sleep which I was unaware of.

All my specialist experience is in M H nursing so will be a bit strange looking for a career change at nearly 50 🐣

I started the thread to check other people's experience of a diagnosis in later life.

[Hidden]

Thank you for response. All the best with finding the information you are looking for. I still don't agree with driving but its your choice. Speak soon.

[Pauley in reply to Hidden]

Hi Lesmal I should clarify I'm no longer driving until at least March 2017.

[Gemgemsxx in reply to Pauley]

Make sure you apply for a disabled bus pass for free travel.

[redboat]

Hello Pauley,

Sorry to hear your story. I started my sz's in my late 40's. No -one could find out why I had suddenly developed epilepsy. It was a major hurdle for 3 years, coping with the mood swings, seizures, medication and side effects, depression and then at the end my husband at the time couldn't cope with me anymore and we divorced and the judge gave him our 5 children as the judge said "You have epilepsy, you are not safe to be in charge of children" So that was the end of my motherhood.

It has been over 12 years and now my consultant says I am OK. I have had so many different medications but the recent one was Zonismide and it cured me and it was fantastic and soon I will be putting in for my driving license again.

It is so difficult to come to terms with, you are disabled and yet no one can see your disability. We are all here to help. If I can, I will. I also went back to Uni to get my Mental Health Nursing, which was great, someone pushed me !!!!

Perhaps you can take a separate road on your life journey.

Take care