Hi just wondered if anyone had any advice on what to do if your on your own and take a seizure

[Siobhan38]

[ecossaise]

Hi Siobhan - to be honest, in my experience, when I lived alone (5 years) of what I would call "full blown" tonic clonic seizures, there isn't very much you can do. I have never been aware that I was having one or that I have had that kind of seizure until well after it has happened!! Mostly, my experience has been of being "found" by friends or neighbours well after it had all happened. Because of living alone, I had several "alarm" systems in place - ranging from friends phoning at certain times of the day to a special alarm linked to a special service and it was activated if I went from "vertical to horizontal" very suddenly. I know that others may have had different experiences and have other comments to add to this but i can only tell you how it has been for me.

[Siobhan38]

Thanks hadn't had seizure for few years and they weren't tonic clonic seizure but took a full blown tonic clonic one just over a week ago and just worried about having one when on my own my advantage is when I did have seizures before always felt them coming on and got that very same feeling when I to the full blown seizure just wondered if anyone had some advice

[willyoung]

Hi Siobhan, I've had epilepsy for 44 years and have been alone on many occasions during a seizure. I can only equate with what Ecossaise has said.

The problem I now recognise with hindsight is that we're all unique individuals, in that we cope differently.

What one person can easily cope with is sometimes quite stressful for another individual. Similarly, I find it difficult to express help within an email as opposed to an open dialogue with someone.

I've experienced a few sad occasions when I came around from a seizure to discover my keys and wallet had been taken but on the whole the general public have been very supportive. It's also frustrating when an ambulance has taken me to A+E for staff to recognise me as a known epileptic and have to pay a taxi to get home. But it's still difficult to advise more precisely.

I note that you have stated that you've had no seizures for a few years. I went 19 years without any seizures and began having more 4 years ago. It has been proven that anticonvulsants deplete the bodies stores of Vitamins and Minerals and after paying privately to discover my vitamin D level was deficient at 34 nmols/L I took 5000 IU's daily to replete levels to the recommended range of 75-125 nmols/L. All of the B Vitamins are affected, particularly B12. I also sought Chiropractic help to rebuild my crumbling vertebrae of the spine caused by Calcium depletion. Sadly Doctors know little about nutrition and supplements so I would implore that people research their condition before their health deteriorates.

Kind regards, Will

[Siobhan38 in reply to willyoung]

Thanks Will

[Michellemcp]

I have an alert band that I wear when i go out alone. It's bright purple and states EPILEPSY ALERT in bright yellow writing. This has helped the general public know what is happening and prevented me being taken to A&E on 2 occasions xx

[Siobhan38]

Yeah I have just order done of them

Thanks

[hayley67]

where can i get one of the bands from please, my son just been diagnosed with nocturnal generalised seizures , aged 16, broke my heart to see him go through this as he has no recollection of anything... would love a band and any advice from people who have experienced the same ...

[Dino]

Hi Siobhan38 my mobile has voice recognition and if I am having a seizure and I know I am I call out my partners name and it rings her phone she then knows something is wrong and dials 999 and comes home.

[WHYADUCK2]

Hi been on my own for a long time and this is a difficult question, .

This week i think i head butted my radiator in my sleep (it was near my bed , i have now moved the bed) as i woke with blood all over the place, all you can do minimise risks around the house as much as you can.and if you can get afford it get a shower fitted

Also beside the bands there is a system called ICE (in case f emergency) which is recognised by the police and ambulance service in england used by motorcyclists and it is brilliant, not only does it have a blank dog tag( etch whatever medical condition) to go around your neck or wrist but the it also has a USB dog tag which you can store all your medical records on, dosage, type etc

They are a little pricey at £35 quid but i have had mine over 6 years and it has been mangled, battlered and misused; and it is still going stong (type in utag i think or just ICE tag in your search engine)

[jules1973]

I usually just sit down or lie down making sure i have my mobile on me and the door is unlocked but my seizures were absence seizures i cld still walk and talk or in work someone always made sure i was ok