Blog posting number one
Welcome to the first posting in the new Epilepsy Action blog.
Obviously, the first thing I need to post is to explain, for those people who don't know, what a blog is. A blog, short for 'weblog', is a bit like an online diary, with lots of short pieces of writing about things the blogger (the person who is writing the blog) is interested in. There are millions of blogs across the web, covering every possible subject.
Obviously, as this is Epilepsy Action's blog, then we'll be using our blog to tell you about what's happening here at Epilepsy Action. We'll let you know of important pieces of news to do with us. We'll use it to inform you of ways that you can get involved with our work.
Of course, regular visitors to our website will have noticed that the first major piece of news is that we have a new website! It's ten years since we got our first website - we were one of the first charities to get online - and we've rebuilt the site. Our aim is to provide a better service to our visitors, We'll be unveiling new features on the website in the next few months. Watch this space!
I hope you like the new site.
Mark, Epilepsy Action
Epilepsy Helpline
- UK freephone 0808 800 5050
- International +44 113 210 8850
- Email: helpline@epilepsy.org.uk
- Txt msg: 07797 805 390 info
Epilepsy Action blog
Comments
Hi Mark, I am a newby at this blog thing. Have just been diagnosed with epilespy and relieved that I have a "label" and that I can be treated. Came as a complete shock to me, but explains a number of "events" I have been experiencing lately. Nice to know there are persons I can speak to on line about this as will find it difficult to get to any meetings at the moment. No doubt you have heard this all before and sorry to be a bore, but there you go !!! I was working shifts, this will have to change, I was driving a car, - there it was gone! I live alone and have decided to change my locks so that door is easy to open and supply various peoples with keys. Have started to tell people where I am going, how long should be out and that if they dont get a home text then to contact me, waiting for my alert jewllery thing at the moment, is there anything else I can do pretty please? Diane
I think the new website is very impressive. well done!
Hi Mark,
I am researching into epilepsy as part of my studies and was interested to notice a blog on this site.
I think it is a great idea that people with this condition can see they are not alone. Fellow sufferers can interact with, and provide support to each other, online, at least.
I am just leaving this comment online to get the blogspot up and running...I hope lots of others do likewise. You new site is really cool
Steve
Hello Diane
It was quite a relief for me to read your comments, my son (aged 24) has just been diagnosed. I could relate to so much of what you said, much from a 'worrying mothers' point of view, but also the things he is having to sort out - like deciding to sell his car etc.Fortunately he lives with his girlfriend so I dont have a lot of the worry that you do about making sure someone knows where you are. Good luck to you and I hope all goes well for you. As you say a 'label' does provide a sense of relief.
Mark -I was really pleased my daughter found this website - there is so much information, and answers to so many questions that I keep thinking of. the practical information for the DVLA, details for car, life (and hopefully soon) holiday innsurance have been invaluable to me. Thank you
Hi Mark,
Sorry but I have to say that the new website is not as good as the old one.
1. You have to scroll across to see the full front page and other pages. Its easier to scroll down using your mouse wheel.
2. The A-Z link of the site is difficult to find.
3. The print is in grey and not black so is difficult at times to read
4. The front page is about fundraising...worthwhile of course but it would put me off if I was new to the site. Latest news first...website map second...shop third maybe.
I do have some other concerns about the site but don't want to depress you too much!!
I will try again as i have lost this twice, third time lucky, as well as my epilepsy (focal) i am also disabled with Gillian barre syndrome which attacks nerves system and immune because of this i can have grand Mal seizures the last one was multi don't remember as they had to put me in comma which I stayed for nine days. since has left me with right hand and leg defaults. One thing John did was chain on door phone in lounge and bedroom and safe-call button to wear and contact when in trouble this could e anything fall, police, the main advice I can give you don't let it run your life let your life run you. I have tablets on a piece of paper stuck to box when to take and for doctors in hospital should it occur. don't let let two many people have keys they get lost and break ins happens, why is your council not fixing safe call quickly, mine 2 days. Don't tell too many people where you are going you don't know who is overhearing, this is not the end of your life. Best of luck sorry to be harsh but lived with it for 16 years plus.
This blog is a very good idea. My daughter has just started taking Epilim 200, she's on 800mg per day. I've noticed she's a bit slower than she usually is and appears to be quite vacant around the eyes sometimes, although she's not having a seizure because she's conscious. She's also complaining that her brain isn't working fast enough in class and when she's doing coursework - she's top sets in everything and I think she is sometimes concerned that she's no longer quick enough with general class tasks. Is this usual? I took the same drug myself in my teens and thankfully grew out of it but I can't seem to remember feeling "sedated", which I think is the best way to describe it.
I had my first fit ( grand mal) in 1961 at the age of 11 years, My parents found it difficult to accept and it was rearely if ever discussed.........therefore I was the only person in the world with epilepsy, none of my friends had it, nor did they have to secretly take their tablets at school as I did. I am now 58 , fit free for some 24 years or so, still taking the tablets. Anyone with children who take fits / seizures must advise them , there is life after and during epilepsy. I left school in 1966 , in 1979 I started my own business which involved travelling to over 25 countries where I made some good friends. I also started a new business in 2005.... you won't believe this one ! supplying flashing lights for Ambulances, Recovery trucks, Rescue vehicles and so on, I just love testing myself !
I don't know if the medication affects my mood.... though I find I can go from miserable to morose within a matter of seconds ! Only joking .my family , lovely wife, and 3 kids........ well 24, 27, and 33 so old kids ( all left home.. which is great) ... anyway my kids can name 3 or 4 days they can remember me being cheerful.
So it's me and my wife, 3 dogs, a dozen or so chickens living in the lovely Lake District, working from home.
Regards
Stuart
Hi Mark
Just found your website and found it really user-friendly. My son was diagnosed with Juvenile Myoclonic Epilepsy (JME) 3 years ago and we've found that he acquires a tolerance to the medication and so every few months it goes up. He is now on 1500mg Epilim and 1500mg Keppra daily. This condition is really getting him down as he wants to do all the things a 19year old does, learn to drive, go to nightclubs, stayup to the early hours,but he can't. Even flashing cameras sets him off !! He has plenty of interests and they keep him going. With regard to travel insurance for Dianne- Roland Smith (Liverpool) charged us £50 for a week going to Bulgaria Snowboarding !!! Not bad considering. He had a great time and surprise surprise no jerks until the last day,but they soon subsided. Good Luck to Dianne and everybody else on the Blog. It has helped me as a "anxious mother", I can chat with people in a similar position and find out the latest re his condition.
Wendy
Hi I have to agree with Erik, the site is not as good as the old one because it is difficult to navigate and to read. I am finding it really difficult to find what I am looking for. When do find it it can be difficult to read because of the grey print and information that was first on the site (the old site) has all been attributed as being first on the site on 20/02/08. If using this information for academic work it will cause problems regarding referencing. Many other issues but like Erik do not want to complain too much. New sites always have teething problems.
Hi
I am writing this at 2.30 am having sat watching my 13 year old son fall asleep after his second seizure in 3 weeks. So what do i do now ? The first time we got an ambulance - this time Isat with him until he had regained the ability to speak , could get into bed , go to the toilet and communicate that he was Ok (ish).
I was recommended this website by the consultant at the hospital after the first seizure as the main source of information and its very informative but am i too early in labelling what is happeneing ?
Apparently at school having seizures is cool - he is now one of a priveledged boys club.
and i am starting to research what might be going on .... so ... do i demand tests from the doctor, do i wait for another one ? Do i assume that another will happen ? do i stop him going away for the weekend and from doing a week away camping - after all he is on school holiday
I will show him this website and chat with him about what might be going on but what do i do about getting a diagnosis - or is two nothing to worry about ?
some words of wisdom and experience would be appreciated
Hi, my daughter. Bailyn age 11, has had epilepsy since she was 2 and we are starting to have issues about what she can and can't do. Accept for a few seizures last year, Bailyn's seizures have been controlled. She is very good about taking her medicine on time and is quick to let me know if she is not feeling well. The problem is that she loves roller coasters. Her mother says she is allowed to ride but only the ones with water. I just don't understand why she can't ride the other roller coasters providing that there are no flashing lights, she rides with me, last EEG was good, and her seizures have been controlled for the past 7 months. Just looking for a win win situation for me and Bailyn.
Jim
Hi Wendy
I empathise with your son, I was diagnosed with JME in 2000, aged 15. Unfortunately it took some time to find the right drug with the correct dose to control my 'jerks' as well as the grand mal seizures I was experiencing. Like your son, I was regularly acquiring a tolerance to certain AED's and dosages were increased & drugs exchanged for others. However there is light at the end of the tunnel! I take Keppra 3000mg, gabapentin 900mg and lamotrogine 500mg a day and have been stable for almost two years now.
The most distressing part is growing up, it seems that all your peers develop their social skills etc without you. I was unable to set foot in a nightclub until I was 20 and I'm 23 now & have just applied for my provisional driving licence. I find that staying positive is the key, please tell your son to keep his chin up!
Katie
Our son (just gone 17) had encephalitis and a couple of seizures out of the blue in February. Nobody in our family have any previous experience & it frightened us witless. After a stay in hospital he was fine for a month & fitted again and has since been diagnosed. Very disappointed he can't start driving.
Don't be afraid to call the paramedics out if it happens again - Hospital told us if he fits for more than 4 or 5 minutes then call 999. They are the ones qualified to decide and the call-takers were great and stayed on the line 'til help arrived.
We've got an epilepsy nurse at the local hospital - at the end of a phone for any queries & discussion. Been marvellous assistance & assurance. This thing is maybe a lot more common than you realise.
He's on medication which has proved successful over 3 or so months with 1 recurring seizure. Downside is the weight gain & occasional vagueness (teenage boy!).
We've gone for the 'carry on & deal with it' approach. He goes on public transport alone (but mostly with his mates), cycles which we fret about but he carries on as normal (includes occassional indoor climbing wall).
We got him a 'dog-tag' with our contact numbers. We're going abroad on holiday (but had to cancel one in May beacuse of this).
My advice - push for a diagnosis - we had to endure several events before he went on medication. The good news is that although it's dreadful to witness initially (and has reduced me - 16 stone bloke - to tears on all occasions)
we now know what to do (and so do all his buddies who dealt with one event while out in Manchester).
Hope that helps
........ and a big thanks to those involved in running this website !!!
Hi Mr W
thanks for responding and for sounding so positive .your comments did help
i too am staying with the 'well its not life threatening and we can deal with it' attitude and am trying not to fret . i have decided to let him carry on a normal ie staying with friends and going camping but will just inform an adult he is with about it . as he is with people who are CRB checked to their eyeballs i will also assume that they have first aiders around .
we saw the local doctor today and have pressed for tests and am being referred to a pediatrican and this will be faster than a neurologist- this is to get the ball rolling she says.
and you are right, I am learning that it is more common than i thought
and i agree this website is really helpful
Hi Jackie.
In reply to you blog about the side efects of Epilim. My son was diagnosed with Epilepsy when he was 4, and the first drug he was put on was epilim. The side efects you describe are normal with this drug. He spent hours asleep, and once it was in his system, he was not the same boy he started out as. it changed him from a very bright boy into one that was continually spaced out, and very angry all the time. i would suggest that if the side effects your daughter is having do not settle, go back to your neurologist and tell them about it. they changed my sons drug to Carbamazapine, and this was so much better for him. Good Luck.
Hiall
Just flicked through some of the comments and I feel all sorts of things. A first time for me to contribute to a blog. At 37, I developed epilepsy 14 years ago after a cerebral haemorrhage and lots of loss ensued. Like my job, which I had set up over 9 years, car, health, fortunately not mortgage but onto Incapacity Benefit and what a joy that can be! And I think 20 different types of anti-convulsant over the years! Somewhat of a work in progress. It is a bummer and at times I have raged. I had some very useful counselling at the stage of diagnosis, helped me may not help others.
Having been told I would never 'retain or retrieve information' I have re-trained.
Some same, some different friends, some lost. A different way of life, so some limitations but I am more accustomed to them now. Epilepsy is now part of who I am: not all of who I am.
I don't know how it must be to be a parent with a child with this diagnosis. My heart goes out to you let alone those managing the predictable unpredictability of it all. Anyway I shall look forward to reading more of this.
Hi Anna
I had a Brain Haemorrage in 2006 at work glad we had a first aider there else i would not be writing this as my consultant at the hospital said i was one of the lucky ones as 67% don't survive,i am ( 54 ) but now i have epilepsy,i do not know when they are coming on as i get no warning,so get very scared and get stress.i don't go out on my own just incase i have a fit as they are unpredictable and i have always ended up in hospital as i have at least two or three don't no nothing about them till i wake up in hospital.the last one i had was june this year so they upped my tablets again hopefully they will work this time i have lost all my confidence.the tablets what i take now seem to be working at the moment but get very tired.
still on incapacity benefit.my place of work still keeps wonting me back to do the job i was doing before all this happened but the consultant say i cannot do it.
hi there,i was diagnosed wiv this a year and 8 months ago.im findin it really hard to come to turmes wiv,my hole life has changed im in the prosses of havin a wet room in my bathroom.i have a lil boy boy who is 4 who of course doent understand why mummy falls on the floor. is there any advice u could give me to help come to terms wiv this.many thanks