andrewf444

Talking about narcolepsy

Posted on 06/29/08, 05:13 am

Hi to everyone in the UK group.

I've noticed that people in the UK seem to be very unwilling to talk about their narcolepsy related issues. Is it the stiff upper lip, soldier on thing going on, or maybe varying levels of narcolepsy, or something else.

I know it's unlikely I would have been on here ten years ago as I did not have the problems I do now. I was actually a functioning person back then.

I'm curious to know what people think. I hope this group created by Dallin becomes a useful source of info for those looking for UK specific answers. So if you have info you think would be useful please share it.

Andrew

• Reply #1 06/30/08  7:10am
  
  noseycow
  Andrew
  
  i have come to beleive that us Brits obviousley suffer more with Narc that our American friends, because we must all be asleep rather than posting on here.
  
  In two weeks on sight I have learned quite a few helpful things. Mostly related to cataplexy mind you...
• Reply #2 07/01/08  7:02am
  
  tooexhausted
  Andrew,
  
  I am like you, six years ago I wasn't even diagnosed with N so wouldn't have been on any site. Maybe in America N & C is better known about and people are diagnosed earlier. Looking back at all my symptoms, i.e. school reports, sleeping patterns I should have been diagnosed a good twenty years before I had been. Most Neurologists that I have seen don't have a clue about N and thats a huge problem. Maybe with the Stanford University the American neurologists are more aware about N & C.
  I only went on a computer course because my daughter knew more about them than me. We bought a PC for her studies and this made me curious to what information was out there. The course was free and you worked at your own pace and whatever time suited you. These two things and the course being in walking distance made me try it. I think your I would have been too scared to join a course that was the same time every week and you had too keep up with your fellow students. I do still worry about my spelling and after writing messages I am normally too tried to read what I have put. This sometimes worries me as I don't always make sense as the words in my head aren't what I always type. Us Brits don't like to make a fool of ourselves, but we all have N & C so we should know how the other person's brain is working and realise its just a symptom of the triedness.
• Reply #3 07/06/08  6:23am
  
  andrewf444
  Thinking about it, it was actually having access to the internet that helped me to figure out that I had N&C. I had been bouncing around the healthcare system for years being diagnosed with one thing then another. It's pretty sad that I had to diagnose myself. The doctors I went to see didn't have a clue. I was treated for epilepsy for ages and put on medication to treat that, which made me feel really ill. I lost count the number of times I was told it was all in my head. It's really wears you being told you're crazy.
  
  Doctors get so indignant when you suggest that they might be wrong which is a joke, it's our health, our well being after all, who cares about their ego. It's not like they don't get paid very well to do their job and that should involve actually doing some background research, or at least taking a look at info patients bring to appointments. I think that's one good thing about the healthcare system in the States, doctors are more accountable to their patients and work harder. The illusion in the UK with the NHS is that we get the service for free, so we should have lower expectations. Not true, the NHS is not free, it's paid for by our taxes. So we should expect a higher level of service. Maybe I've just had a particularly bad experience, but I've heard over and over that people are bounced around from one consultant to the next with no real answers. Forums like this are such a help. I wish there had been a site like this available when I needed answers.
• Reply #4 07/12/08  11:34pm
  
  DonnieDarko
  Hi Andrew,
  I hope you are well.
  I have had Narcolepsy with Cataplexy for the last couple of years. Well this is when it became a life intruder anyway and I couldn't pretend any longer.
  
  Recently I have had some scary news that my Narcolepsy could be the result of a tumour growing behind my eye and pressing on my brain which is so hard to cope with. All results due on Thursday so I should know then.
  
  I have a daughter and I am so worried if it will be something like this, it has totally put my Narcolepsy into perspective and I pray to god everyday.
  
  Of course I have to wait a week for optical results as no one rushes on the NHS. I have been complaining of bad headaches, on hugely enlarged pupil and other related stuff for the past year but my consultant just says EVERYTHING is due to N. God I hope he's right.
• Reply #5 07/14/08  5:46am
  
  andrewf444
  Hi DonnieDarko
  
  Welcome to the UK group.
  I'm keeping my fingers crossed for you up to and on Thursday.
  Probably not all day every day but in my thoughts anyway.
  I would pray but I'm an atheist so that would be pointless.
  
  
• Reply #6 07/15/08  7:42am
  
  DonnieDarko
  Ha ha you make me laugh thank you. I like that.
• Reply #7 08/05/08  8:21am
  
  Annie50
  Our experience with getting a diagnosis for my son, sounds a lot easier than a lot of other peoples. I was fortunate in that I work in mental health and as soon as my son admitted to me he was having halucinations ( which was 4 months after they had started ) I went to one of our consultants and discussed it with him. My immediate thought was that it was something along the lines of schizophrenia. Straight away he told us to go to the GP and get a referal to this Neurologist in Bristol and that it wasn't a mental health illness ( Thank goodness for this remarkable man! ). We then went to the GP who if I hadn't been told who to get referred to I don't think would have had a clue. From then on my son got his diagnosis. I think we were very lucky. My son chooses not to use the support network yet,but it has been such a huge source of information for me. I think in time he may realise the value of it, but at the moment he doesn't talk to anyone about it except close family. I believe he has had N most of his life, as he never gave up his afternoon nap from a baby and had alot of very vivid nightmares throughout his childhood. He would always sleep everyday after school, and at weekends after football or rugby he would always have to sleep. I strongly believe that people don't talk about it because its not a well known illness. Maybe there is a way we could promote more awareness of it?
• Reply #8 08/29/08  3:25am
  
  noseycow
  I have been quite open about it where I work, because if the wave hits me - I have to take my break and get a nap - that is generally accepted. But yesterday I mentioned to one of the doctors at work that I have Narcolepsy and she said 'I think I've got it too as I'm always tired'.
  
  That is why I think its not talked about much - I can't count the number of times I've had this reply... sigh

This group is for us to discuss issues specific to the UK such as medical and employment issues. For general discussion relating to symptoms, management of narcolepsy, everyday stuff etc. please continue to use the Daily Strength Narcolepsy group (link above) as those discussions are beneficial for all narcolepsy sufferers around the world, but disability law, disability benefits and medical resources available here in UK differ so this is the place to discuss and find and offer help