Narcolepsy Support Group

I have never woken up with the sensation of having a "weight on my chest"...nor have I seen that in the diagnostic criteria. I do have the diagnostic criteria used in the US posted in my journal for anyone to reference. I hope some of the UK people on here can help you out with some practical advice on negociating the system over there.

The Dr in this instance (A chest pecialist who does tests for apnoea) when I told him that I had hallucinations on dozing, waking and falling asleep barked at me, "do you get paralysis when sleeping, put on thespot, I answered "no".

I thought about it later when I had the apnoea study and told the nurse about the senstion I have when I wake up but feel I'm asleep and can't wake up. Not so much that I can't move, just that I can't regain active conciousness. I also have a strange electrical pulsing or buzzing in my head when this happens as though my brain is tring to jump start itself. the nurse said "oh that doesn't sound like sleep paralysis, it's more like a weight on your chest and you can't move, also you don't collapse when you laugh, do you?"

She did say she'd talk to the doctor but then I got a letter stating tha it didn't ound like narcolepsy so no sleep study for me.

I am so sorry you are going thru all of this. I'm with Marilyn, try to get with some of the people from the UK. You may already know this, but if you look at someone's profile if it is listed you will be able to tell if anyone from the UK is near your area. Also as part of this group there is a sub group that is made up of people from the UK. Good luck and if I can find anything on the net I think may be helpful I will let you know.

I've already chatted to Hannah ad she's offered many helpful tips which have been great. The trouble is that all the hospitals with sleep centres are so far from where I live.

Advice and support

Narcolepsy Association UK
Email: info@narcolepsy.org.uk
Website: www.narcolepsy.org.uk

This article was last medically reviewed by Dr Trisha Macnair in April 2009.

I do not have the "weight on my chest" feeling with my sleep paralysis. I do feel like I cannot move at all but it is not just on my chest and I would not say it feels like a "weight." To me it is more the feeling of being paralyzed, my whole body will not move even when I want it to. (isn't that why they say "sleep paralysis" instead of something else?)

I am not to familiar with the UK medical system, only what I can assume from what others have posted regarding it. If it is a matter of fitting into the specific more common things they say about N (cataplexy, SP,etc) can you stretch the truth to get a sleep study again? Even saying that sounds bad to me but if it got you the sleep study and diagnosis it may be worth it? If it turns out you do not have N, you would know and not be stuck wondering. Again, not sure how your healthcare system is so just offering a suggestion or way around it??
If you have a diagnosis of CFS, it seems to me they agree with the fatigue. Do you have any other symptoms that relate to it? I do not know much about CFS but I think it deals with alot of body pain as well? ok, i just looked it up- quick copy and paste here:

.[2] Diagnosis requires a number of features the most common being severe mental and physical exhaustion which is "unrelieved by rest",

This sounds like N except somewhat backwards whereas our symptoms are the cause of not getting the quality sleep. I would think that a sleep study and MLST would be the only way to know because otherwise CFS could look like N....?

I hope you can get what you need from your doc or another doc...please keep us posted and I wish you all the best!

If I can help in anyway even just by listening or letting you vent, please let me know.

Julieanne

Hi, I'm in the UK.

I know as far as getting sleep disorders diagnosed some areas are a lot better than others. I'm pretty sure that with the "new" NHS patient charter or whatever they call it that you can now find and choose a specific place to be treated. I think that this can be outside of your county. As far as your doctor goes, if he has no clue about narcolepsy then he's probably going to keep telling you that you don't have it. He wouldn't want a dent in his ego and to admit he doesn't know. The least he should do is refer you on to see a neurologist. I was pretty much told it was in my head for many year. If you know things aren't right don't let the doctor tell you otherwise, in my many experiences I know they do not know it all.

You have rights as a patient and you can push if your doctor is being uncooperative. The patient advocate scheme is one route you could go, or, find another practice with a different doctor/s. I think I would probably contact the nearest sleep specialist directly and bypass my GP, ask their advice and how best to go about getting tested. If you annoy your GP by doing this so what, it's your health, your life.

To be honest, where I am in the South they are very slow and the only place for me to go really is St Thomas's in London, the waiting list is around six months to get the sleep test, and however many months to see a consultant. The whole process is about a year. That's here though, I don't know about other parts of the country. I actually managed to get multiple sleep tests quite quickly because I volunteered to be a test subject for a new drug and was tested in their facility.

If you go to this website it has a list of all the UK sleep centres and sleep disorder specialsts.

http://www.narcolepsyconnections.co.uk

If I've got anything wrong here I'm sure another UK member will mention it and hopefully give you the right answer.

Best of luck.

Hi Moon Stone,

I am also in UK. I came down very suddenly in Cambodia with EDS in March and was flown home after tests in Thailand, they suspected N. My Dr here in UK said it was very unlikely to be N. But my friend, who is also a GP had actually been able to observe my sleepiness longer than any GP could, suggested I should be referred to a sleep clinic. She wrote to my Dr and he then referred me to Papworth sleep clinic in Cambridgeshire. I have sleep tests scheduled for the end of July so has only taken 4 months, since I got back from Thailand. Everyone in UK has right to change their Dr at any time, I would keep changing Dr, till you find one who will listen and push for referral.

There is a support group on Dailystrength here called UK specific Narcolepsy for us here in the Uk, have a look http://www.dailystrength.org/group...

thanks all. I'm just off to see my GP about a funny spell I've had occasionally where my joints go numb. It feels like a blood sugar issue and is quite scary. Over this one I've been considering changing doctors as they don't take it seriously. I nearly ran under a car as I was so confused! I'll try and get somewhere but I'm a bit lost at the moment. Fighting on too many fronts and got the energy for none of tem. I just want to curl up and sleep.

Do you have a family member or close friend who can help you with the doctor situation? Sometimes when doctors hear the same concerns from someone who sees what you are going thru on a daily basis they are more likely to take it seriously. Plus that person could help you sit down and figure out who you need to contact and help you in getting help without totally wearing yourself out.