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daz1969

daz1969

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Hello,
Just wanted to drop by and say Hello to everyone.
Its my first post and hope that I can stay around and make some friends, get some advice and share my experiences.
I was diagnosed in late November of 2016...
Not sure what else to say at the moment...
I really look forward to hearing from you.
Daz
 
Hi Daz welcome to Coping With Epilepsy, I hope you get as much from it as I have over the years, I'm not sure where you live, but it's good for us all to share our experiences around the world.
I first joined in 2008, and still keep in touch with some of the people I met on here so it's well worth it.
I saw that you had sleepwalked a few times, have you also had seizures, tell us a little bit about how it all started, we will be only too happy to share our experiences with you if you'd like to know anything.
I've had Temporal Lobe Epilepsy since 1986, caused by being born by forceps, I've had brain surgery twice and tried every med there is over the years. When I got diagnosed, I was to lose ten jobs over the coming years because of the stigma.
You'll soon get to know people.
 
Hi Elaine, Thanks so much for your lovely message.
Yes, I have sleepwalked 3 times, my last one was in the November, I have had no seizures - only the sleepwalking.
I am being treated by Walton Hospital in Liverpool, I am currently taking 75mg of Lamictal twice a day.
Basically, I have never experienced anything unusual in my life until the first episode in 2015, it happened at work, I had a burning smell and felt that I had left my body and was looking down on myself - I went to my GP, she told me it was migraine or epilepsy, they went down the migraine route, didn't have any tests and was put on migraine medication.
So, that was it - I just carried on until the sleepwalking episode in the May of 2016, I went to A&E who then referred me to a consultant at Walton, had all the usual tests, MRI and EEG, I was told that it was 'likely' to be epilepsy - and that was it, I refused medication purely because they could not say 100% that it was epilepsy - I just didn't know what to do, so November came and I had yet another sleepwalking episode and decided that it might be for the best - again, so frustrated that they could not say 100% what it was.
So, 8 months on and well, still very, very frustrated as you know, losing my driving licence - words cant explain what an impact it has had, but again, everyone knows where I am coming from.
I finally got an appointment back at Walton about 3 weeks again - it was awful, they did not know I was on any kind of medication, they said I have had seizures in the day, the nurse just spoke over me and gave me a leaflet - I am so angry.
I asked about my licence - she said, well the consultant isn't back in the country til January so she didn't know who will be able to sign me fit to drive.
I said no matter what I will be applying in September 8 weeks before its due (again, why does nobody tell you to apply 8 weeks before?), she just frowned.
As for work....... Ohhh where do I start?
 
Hi daz1969,

Welcome to CWE! I have had right temporal lobe epilepsy for 45 yrs. and I had 2 surgeries to help reduce my seizures, I've also had a DNA test done and I found out I was drug resistant so my Epileptologist which is a Dr. that specializes in epilepsy put me on the medical marijuana last yr and I am amazed to say it has reduced my seizures to the lowest ever in my life. I started out having migraine headaches when I was a kid and that turned into absence and complex partial seizures. Yrs. later after I had my surgery I would often wake up feeling tired even though I got plenty of sleep and then my Dr. did a sleep study on me along with an e.e.g. and e.k.g. to see I was having seizures in my sleep but I never realized that. I was put on the drug vimpat and that stopped the seizures I was having in my sleep. It is up to you but you may want to see a neurologist or Epileptologist and request a sleep study especially if you are sleep walking.
Be sure and keep track of any possible seizures write the time down on a calendar that the seizure happened along with a description of the seizure by doing this the Dr. may see a pattern in the seizures as to what time of day/night they happen or what days of the month. What you described sounds like a simple partial seizure also called an aura seizure where you smell odd odors or sometimes get colors in your eyes along with a nervous feeling in your stomach.
Everyone here at CWE has been a great friend and a big help to me I've learned a lot even though I've had epilepsy for 45 yrs. I wish you only the best of luck and May God Bless You!

Sue
 
Hi Daz, welcome! Make yourself at home. :)
 
Hi Daz
Good to hear back from you, I got half way through writing to you the other day, but as I have very little in the way of concentration and attention skills, I never did finish it.
I hope you've had the chance to look around the site and some of the discussions going on in some of the rooms, very interesting most of them, and if only I could sit still for long enough, I'd spend more time on here but I drop in regularly to see what's going on, I'm sure you'll love it.
Have a good weekend, and catch up soon. Cheers Elaine x
 
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