Sleepdesk Problems Forum

Hello

I am a CPAP user and normally when I put the mask on I don't get a huge pressure pushing through at first (it is a Autoset Spirit) but tonight I have a slighly bunged up nose so sitting here sniffing a hankie which has been doused in Olbas oil to help relieve the stuffiness.

Is it because I may be coming down with a cold which is causing the pressure to feel like it is blowing a gale force wind on my face when I first put my mask or could it be a fault on the machine? The machine is at the normal pressure when I first use it and is going up to a higher number than normal after an hour but that would be easily explained with having a slighly stuffed up nose. As the night goes on I am feeling as if it is going to blow my head off so trying to sleep without it which I know means I will be in a ratty mood come tomorrow but not necessarily sleepy.

The mask is fitting on my face the way it normally does and I have checked the hose pipe for leaks along with making sure that the humidifer is attached correctly.

Is there a simple explaination or would I need to go up to the hospital to get it checked out on Tuesday (as it is Bank holiday Monday today and the department will be closed)

any advice pleaseeeeeeeeeeeeeee

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Reply from: Bob
Date: Monday 5th May 2008 at 7:22 PM
On the CPAP machine I used to have, there were swiches to alter the delay up to 20 mins, before it slowly rose to full pressure. Or it could be set to go to full pressure immediately. I could tell just by the sound of it, as the noise increased.

CPAP's are very reliable nowadays, but if you think the unit is faulty, the only way would be to let the hospital check it out.

You should still be able to use it, though I found it hard to get off to sleep with startup at full pressure, but mine was fairly noisy.

If I had a cold, I used to put a drop of Olbas oil directly into the water of my humidifier, but if you're not used to it, it can make your eyes water

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Reply from: Duckling
Date: Tuesday 6th May 2008 at 8:45 AM
Thank you Bob for your reply. I now think it may of had something to do with my cold which I was starting to come down with. Yesterday I kept a hankie doused in Olbas oil near me along with a couple of good old sniffs from the menthol crystals in hot water to help clear up my nose.

I slept a lot better lastnight just over 7 hours were recorded on my cpap this morning which means I will be content for the rest of today.

Should I have any more bother with it I will get it checked out by the hospital as I am very fortunate that the hospital with the sleep unit is just along the road from where I live.

Thanks again and take care

I had my daughter staying overnight and had to waken her the next morning. I was shocked by her breathing and actually recorded it on my mobile phone. She was annoyed and said her friend had done the same thing the previous week. After downloading it onto the computer she actually stops breathing for 20 seconds. She is very overweight and has snored loudly all her 22 years. She had her adenoids removed when she was 5yrs old.
She doesn't have a very understanding doctor and is reluctant to see him regarding this. I am really worried about her especially after reading some of the websites relating to it. Do you think she should see her doctor right away or try to lose some weight first? She thinks she will just be told to lose weight but the last time she asked her doctor for help with losing weight she was told to stop eating so many calories. She can't afford a slimming club and gets annoyed at me when I try to help her.

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Reply from: Bob
Date: Wednesday 9th April 2008 at 2:03 AM
Your daughter has all the symptoms of obstructive sleep apnea, but only a sleep test can give a true diagnosis.

Your doctor will definitely tell her to lose weight, but if you show them the mobile phone recording, they should refer her to a sleep clinic for further tests. I would think all doctors have heard of OSA now, as it's been on television quite a bit.

You can't demand a sleep test, but if the doctor doesn't do anything, I think you should change your doctor or get a second opinion. There are some older doctors that don't believe that OSA exists, as I have meet one.

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Reply from: Pow Wow
Date: Wednesday 9th April 2008 at 11:56 AM
Thanks for your reply Bob. I've managed to get her to log into a diet site just to learn about calories etc. She says she is determined to lose the weight this time but unfortunately I've heard it before.Think we all got a bit of a scare though so hopefully if she loses some weight it might help. Will this be the cure though or something she will have to live with even when she's thinner.

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Reply from: Bob
Date: Wednesday 9th April 2008 at 6:43 PM
Unless your daughter is extremely overweight, slimming may not be a total cure, but it could help.

Even underweight people can have sleep apnea, but it is usually associated with being overweight. She still needs to see a doctor about stopping breathing during sleep.

What happens is that during sleep, the throat gets floppy as it relaxes and shuts off like a one-way-valve. You eventually wake up and start breathing normally. There is no recollection of this happening to the person, and it can repeat every 15 minutes through the night.

It definitely needs to be checked out by a doctor.

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Reply from: Pow Wow
Date: Sunday 13th April 2008 at 3:00 PM
I think I have now convinced her to see the Doctor. She is probably about 8 stone overweight though and as they weren't nice to her before I think that's what putting her off asking. Thanks for getting back to me though.

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Reply from: Bob
Date: Monday 14th April 2008 at 12:14 AM
Being overweight puts a strain on your heart, and so does sleep apnea. The two together are double the risk.

Let us know what happens, as there's probably someone reading this that may be in a similar situation.

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Reply from: Pow Wow
Date: Tuesday 15th April 2008 at 4:46 PM
Will do Bob. She's coming for tea so will let her read your replies and hopefully she will make an appointment tomorrow.

Keep you posted

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Reply from: Pow Wow
Date: Thursday 17th April 2008 at 7:01 PM
Daughter saw a Doctor today who has referred her to the Ear,Nose and Throat clinic before trying the Sleep Clinic. Also been referred to the Weight Management Clinic starting Tuesday so hopefully if she loses some weight she'll notice a difference. Will keep you posted on her progress.

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Reply from: Bob
Date: Friday 18th April 2008 at 12:16 AM
Thanks for keeping us up to date. The doctor should have given her the standard written Epworth sleepiness test? She could take it here at:
http://www.circlecity.co.uk/sleepdesk/epworth_sleep_test.php

This is what is normally given to anyone suspected of having sleep apnea.
The test may seem a little strange, but it's the one all doctors and sleep clinics use and is recognised internationally, prior to any treatment.

The ENT will probably examine her throat for signs of narrowing or flabbiness, weight and neck collar size. Over 17 inches is not good.

I have sleep apnea. Is the laser treatment that The Private Clinic in Harley Street does available on the NHS anywhere?

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Reply from: Bob
Date: Sunday 16th March 2008 at 5:02 PM
Hi James,
The throat laser treatment AFAIK is only to try and cure snoring. It was sometimes done for OSA, but I don't think they do it now on the NHS, due to the failure rate. I had it done about 10 years ago, together with removing my uvula (the dangly bit). It is very painful when it's healing, you have to re-learn to drink, and it can alter your voice. It didn't work for me at all.

There are other more serious operations that can be done to widen the throat, but they may involve moving your jaw forward to do this. I don't think the NHS will attempt this, but I've read it has been done in America.

To get any treatment at all on the NHS, you have to be referred by your doctor to see a sleep specialist, and if you haven't been referred already, it's a long wait.

You'd be better to get your doctor's advice as to whether it would be suitable for you.

I have a humidier attached to my Mesmed autoset spirit.

Can anyone tell me how they keep the silver tray in the humidifier clean as I seem to of built up scale on mine. I do wash it out daily and once a week put it through the dish washer on it's own.

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Reply from: Bob
Date: Tuesday 11th March 2008 at 11:50 PM
Though I've never tried it, citric acid (lemon juice) is supposed to dissolve lime scale. You can also buy citric acid cystals from wine shops (home brewers use it for cleaning containers) safe to use on plastic.

Also, someone told me that Coca Cola will do it. If it doesn't work, you could always drink it

Don't forget that any water you use in the humidifier should be pre-boiled and cooled, before you use it.

When mine got too grotty, I just asked for another and they gave me a new one. It's possible that you can get one on prescription from your doctor. Worth asking about new one as a spare.

My tip if you get a cold:- add one small drop of Olbas Oil to the water. It's very strong but it lets you breathe easier.

Hi. Has anyone heard of a link between use of computers and insomnia? I have NO BOTHER going to sleep in the first place. I get a few hours kip- then like clockwork I'm awake. The only thing I can think that has changed is my new job- where I have to use the computer more ofetn. Any thoughts
Many thanks

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Reply from: Bob
Date: Wednesday 12th March 2008 at 9:43 PM
Hi Erik with a K,
I haven't heard of any connection. I would think it may be the stress of starting a new job.

HI bob hope your ok. Last time I wrote to the sleep desk I wasnt sure if I had narcolepsy or cataplexy.And of course had alot of questions.Since then I have been filmimg with itv.And pleased to say that I have now been fully diagnosed.And yes I do have it.I just wanted to say a big thankyou as if it wasnt for your help and support I wouldnt be where I am today.Good luck.and thankyou once again.x

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Reply from: Bob
Date: Saturday 8th March 2008 at 12:09 AM
Hi Paula,
Sorry you've been diagnosed with narcolepsy/cataplexy. The good news is that you'll be a film star

A little know fact is that I've been an extra quite a few times for Yorkshire Television. Mainly in "Touch Of Frost" as I was a contract lorry driver for ITV and used to get pulled in when they were short of an extra.

You'll have to let us now when it's going to be broadcasted, as I'll certainly watch it.
Best regards, Bob.

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Reply from: Paula
Date: Monday 10th March 2008 at 11:15 PM
Hi bob.
love touch of frost by the way. I dont know about being a star still cant get use to not having the cameras following me about though.But I made a couple of new friends out of it.Nicki and sam the researcher and producer where fantastic.And hope to stay intouch even after its been on.Its schedueled for around september and will be on channel 5.Not sure of title yet as it may change but so far its called 'dark side of the brain' There is another gentleman on aswell as me but sadly I didnt get to meet him.Which I would have liked to have done.As i think meeting someone with the same condition would help me deal with mine.

will keep you posted on my treatment and the title of the programme.

take care

Paula.

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Reply from: Bob
Date: Tuesday 11th March 2008 at 1:27 AM
It can be interesting to see how they put these programs together. It's surprising how many people make up a film crew, especially the outside broadcasts.

The program should make narcolepsy/cataplexy a bit more understandable, which is good.

Channel 5 have used this message board a few times. If you put "channel 5" in the "Search the forum" box, it will bring the messages up.

I hope your treatment goes well, Bob.

Hi there!
I have sleep aponea and have hit upon a rather stressful episode.
I was diagnosed in 2000 using both the home oxy meter thing you put on your finger during the night and 2 sleep studies, after being told i stopped breathing every 10 minutes, and was only able to sleep 2 hours at a time, I was just simply advised to lose weight.
Managed to lose about 3 stone, but gained it back last year. I am now under the weight I was when i had the sleep study by about 1st, but things are getting worse.
Now I am only able to sleep for 1-2 hours at a time, my voice is distorted and tighter, My neighbours are stopping me from sleeping (obviously they can hear when i try) so im going 2-3 day without sleep at times. But i recorded the sound, heres the strange part: it sounds like my vocal cords are at work as well and its VERY loud! The recording was made with a digital recorder and i distorted the recording through high volume. Scary.
As you can imagine, im a touch worried and very tired. Have requested a further sleep study through my doctor, but i have no idea if this will happen or when, as my doctor can be unreliable. Is there any way i can speed up a possible treatment proccess? Or an alternate method of getting a recognised diagnosis? Im unsure how long i can endure the current situation, its getting rather tedious to put it mildly!
Btw: The results are the same when i use a mouthguard thingy that stretches my jaw to its fullest extent. (btw: has anyone been able to answer the telephone after removing one and finding out your teeth and tounge no longer match? Its funny and embarassing! Just thought I would add a light note...)
R.

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Reply from: Bob
Location: Leeds
Date: Monday 25th February 2008 at 12:10 AM
The mouthguard thingies are a bummer. Mine had rubber bands on it and I kept swallowing them. Didn't work for me at all, except for a very sore jaw in the morning.

There's no way you can speed up the process, unless you go private. It's a take it or leave it thing, and as they are overworked and under-funded, they don't make it easy for you.

If you've got severe OSA, you'll probably finish up with a cpap machine. The only trouble is that they don't have an unlimited supply of these expensive little machines (about £700 when I last looked) and you can't legally buy one yourself without a sleep specialist's recommendation.

The only thing you can do is remorgage your house, sell your car, evict the kids, and go private :-)

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Reply from: Roman
Location: Norfolk
Date: Tuesday 26th February 2008 at 11:09 PM
Thanks bob for the reply!
Ive been having a nose on the net for solutions to this somewhat stressful problem. Im hearing about some strange mouth and tongue excercises that claim to reduce/cure the snoring and another one is a procedure that places small pieces of plastic in the soft tissue to firm it against the vibrations. All curious stuff!
Im harassing my GP until i can get some confirmation that an appointment has been set. Best I can do at the moment I guess. You are right, it does only move forward as fast as it does.
Im prepared for a battle till i can find a treatment that works, one method i might point out is keep a recording of the nightly noise on a hand held player, and if your GP tries to fob you off with anti-depressants (yep, im a touch depresed with this saga, but its not the cause!), simply play it at a good volume and ask them if those tablets or whatever are going to help fix this sound. Are they sure? Lol!
Ill keep trying with the mouthpiece, ill either have a kirk douglas chin, or have to admit its a gumshield for my addiction to sleep boxing! Gotta stay positive!
Thanks for the advice! Ill let you all know how things progress, and anything else i learn on this confounded subject. Bet you never thought you would all be researching this when you were in junior school!
Many thanks,
R.

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Reply from: Bob
Date: Wednesday 27th February 2008 at 10:38 PM
Hi Roman,
When I was diagnosed with OSA, I'd never heard of it. Lost my job as a long distance lorry driver though, because I couldn't pass the medical to keep my HGV1 licence.

There are some operations you can have, though not guaranteed. I've had various operations on my nose to allow me to breathe through both nostrils. I've also had my uvula removed (the dangly thing at the back of your throat) plus my throat lasered to try to stop my loud snoring. All were unsuccessfull. After this type of op, you have to learn to drink differently, as it can easily go down the wrong way. It can also alter your voice, though mine is still deep.

It was all experimental in the UK. If you look at the cpap pages on this website, they tried me with every different device and cpap mask over a 5 year period. As I had OSA really bad, they eventually gave me a tracheostomy which is a total cure for sleep apnoea and snoring.

The cpap machine just didn't work for me, as they couldn't get a mask to seal with the pressures required to overcome my OSA. Though it has changed my life, it's not without drawbacks. It's very unpleasant and smells if not cleaned regularly. I now have what is called a sleep apnoea tube which is just a plastic tube in my neck, no straps. Changing the bloody thing is awesome, so I won't go into detail, but it's on this site.

Don't even consider a tracheostomy unless your health is in danger, happily married and settled
Regards.

Hi,

For several years I have had no trouble at all getting to sleep but without fail I waken 3-7 times during the night, I do usually get back to sleep quite quickly after I wake up. This affects my work life as by 2pm (I know people dip after lunchtime but i seem to get hit harder more than most at this time of day) I am ready to sleep when I should be fully focussed on my job. It also has affected my leisure time as by the time the weekend comes around I end up taking up most of either Saturday or Sunday catching up on sleep. I rarley drink and otherwise I would consider myself to be a fit and healthy 30 year old man.

Any help on will be appreciated.

Thanks

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Reply from: Bob
Location: Leeds
Date: Wednesday 13th February 2008 at 07:43 PM
Hi Al,
There are no magical cures for your sleep problem. As you get older, things change in your personal live and also your body changes, I know mine has.

There are probably 100's of reasons why you may be woken during the night, and only your doctor or a sleep specialist would be able to diagnose this.

The first thing you must do is see your doctor about it, and they will no doubt check you out for any medical or stress problems.

You could try the Epworth Sleepiness Test:-
http://www.circlecity.co.uk/sleepdesk/epworth_sleep_test.php
to see what it reveals?

If you get a high Epworth score, you can quote this to your doctor, as they will know what this test is.

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Reply from: Al
Location: Edinburgh
Date: Friday 15th February 2008 at 08:28 PM
Hi Bob,

Thanks very much for your reply. Seen my doctor and was kind of fobbed off. I took the test (thanks again) and scored a 9 which is only one mark away from needing to seek medical attention soI'm kind of in limbo about what to do. I'm not really the type to let things go without an explanation so I might skip the doctor and seek some guidance from a sleep specialist. Thanks again Bob.

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Reply from: Bob
Location: Leeds
Date: Friday 15th February 2008 at 11:48 PM
Hi Al,
Seeing a sleep specialist is going to be a problem (unless you go private) as you must be refered by a doctor. You can't arrive at a sleep clinic and be seen. Plus, the sleep clinics are really busy, short staffed and don't have a great deal of funds, which I've seen for myself.

It is not unusual for sleep problems to be ignored by very busy doctors, but that's the only way. If you're married, it's best to take your wife when seeing a doctor, as they will take more notice if your problem is affecting someone else.

I think you should leave it a week, then go back to your doctor, and tell him that it's really effecting your job and your life.

For the last 4 weeks I have developed a very peculiar sleep pattern. I only sleep on alternate nights, i.e. if I sleep around 5-7 hours one night (in total, always interrupted several times), then the next night I am not tired until 6 or 7 am. I usually go to bed then and may (or may not) sleep for an hour or two. The next night I sleep, the following night I do not, etc, etc. I have made a chart for the last 3 weeks and coloured in the hours in which I sleep and it looks like a zebra crossing...
While I felt fine on my days after a waking night for the first two weeks, I now feel drained pretty much all the time. Having added up the hours I sleep over a week, I manage an average of 4.5 hours per 24 hour period (from previous average of 7 or so hours).
Has someone else come across this and has anyone got advice available for me? I have made an appointment with my GP but won't be able to see him for 2 weeks. I have tried meditation, don't drink caffein, tried relaxation, deep breathing, all to no avail. I just am not tired on these alternate nights.
Erika, Leeds.

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Reply from: Anonymous
Location: England
Date: Monday 11th February 2008 at 08:03 PM
I took a test and was told if your not tired you dont need more sleep and use the time you are awake effectively

Hello,

I am a university student and for my journalism assignment I have been told to write a first person article. I am looking for someone to interview for this article.

I would like to do this piece on a parent that watched their child have a night terror for the first time. Preferably I would want to interview someone who child was under the age of five and lives in London. This piece would be entirely written in your voice describing the events of that night. You would have to describe your emotions, thoughts and what you saw that night.

Anyone who is interested in participating in an interview, please don't hesitate to contact me. My e-mail address is (dayinis at tiscali.co.uk). I am looking to write this article by February 16th 2008.

Please trust that all cases will be handled with the uptmost sensitivity.

I look forward to hearing from you.

Best wishes,

Juliet

Hi,
Can anyone help me, or give me advice please. I've tryed everything to sleep from not drinking things with caffine in, to getting up at the same time everyday. I just can't sleep on a night, if i do fall asleep i wake up a couple of hours later wanting to get up. I feel tired all day and i feel that tired at the moment i havn't been into college all week. If i don't sleep though the day, i still don't sleep on a night. Sometimes i can go for a days without sleeping and not be able to function. Then sleep all day. Then the next day go without sleep again. (If that makes sense.) If you can make any sense of that, advice please. Thanks.

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Reply from: Barry
Location: Sheffield
Date: Wednesday 30th January 2008 at 02:09 PM
Hi Jo,
It makes perfect sense to me, as it's been happening to me for as long as I can remember. I've given up trying to do anything about it now and sleep when I'm tired, which is mostly in the daytime. I'm retired now so it doesn't matter much in my case.

As soon as it get's dark, no matter how tired I am, I can't sleep unless I'm exhausted. Something is triggering me to stop awake during the hours of darkness and I've no idea what it is.

I have been to the doctors ages ago about this problem, but it doesn't seem to be an important issue to them. They tend to fob you off saying it will rectify itself eventually, but it doesn't.

I don't know whether this is an hereditary thing or not, as one of my grandsons is having the same problem. I did have a very unpleasant childhood which may have messed with my brain, but who knows.

I've since learnt that sleep clinics can help, but it's getting referred to them that is the problem. Doctors are more understanding now of sleep problems, so if you're young and have a good doctor, it's worth a try. Too late for me now as I'm a hopeless case :-)

Hello,

Granada Television are currently looking for contributors for a new Channel Five documentary series called Darkside of the Brain.

The series will explore rare and unusual neurological conditions through real life stories with interveiws from leading doctors and scientists. Each one hour programme will aim to look at a specific region of the brain and the consequences of it malfunctioning.

In exploring the hypothalumus, we are specifically looking for patients with narcolepsy, who also suffer with cataplexy, who might be willing to tell their story on television.

If you have narcolepsy with cataplexy and would like to get in touch, if only to learn more about the programme, please don't hesitate to contact me.

My direct line is 0207 261 3521 or you can always email me on (nicki.dixon at itv.com)

Please trust that all cases will be handled with the uptmost sensitivity.

I look forward to hearing from you.

Best wishes,

Nicki

Can anyone help? my partner, just before falling asleep makes a sort of moaning noise or a sigh. its stops her falling asleep as and she does it nearly every 20 seconds and stops me from falling asleep to. does anyone no any cures to stop this or anything that could help?

Does anyone know how much electricity a CPAP machine uses through out the night. I use mine on average of seven hours per night and on the odd occasion when the face mask has slipped I have been surprised at the pressure which the machine pushes through. It can be almost as strong as an electric fan and I am aware that an electric fan can use a high amount of electricity to run.

I am more concerned with the fact that the cost of Electricity is forever increasing but yet I do need this equipment to prevent the consequences that sleep apnoea brings if prevention is not taken

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Reply from: Bob
Location: Leeds
Date: Wednesday 5th December 2007 at 07:25 PM
Hi Patricia,
If you have a look at the underneath of the cpap machine, it may have the wattage printed on a label.

When your mask is unattached, the cpap pump will go flat out as it's open ended, trying to build up pressure. It seems a lot of air, but the motor is quite small.

Just had a look at a large (12inch blade) electric fan, and it's only 40 watts. A cpap unit motor is much smaller, so it will probably use much less.

I've handed my cpap machine back, so I can't look at one, as I have a tracheostomy now which is a total cure for my OSA.

Hi everyone...I've had trouble falling asleep since i was a teenager and am now in my thirties... I've always thought it was my body clock and there was nothing to do about it. The falling asleep late has never bothered me...it's the not being able to get up in the mornings that effects me most...I'm often late for work and contantly worry about appearing lazy and irresponsible. It may sound strange but I've never thought about seeking any kind of medical help as once asleep i have no bother sleeping so it's not insomnia or anything and if I let my natural sleep pattern take over at weekends and holidays etc I feel great. However I have more responsibility in work now and really need to start getting in earlier but this would mean only getting about 4 hours sleep a night which just isn't enough for me so I was thinking about approaching my doctor (who I very rarely visit) for sleeping tablets. I decided to do a little surfing yesterday and came across a DSPS article on Wikipedia and was so happy to find something that described my circumstances exactly, it made me happy to realise i'm not the only one in this situtaion and gave me hope that I could maybe change my sleeping cycle. I've become fed up with people suggesting i go to bed early with a hot milky drink! If i go to bed early I just lie awake for hours on end stressing about not being able to sleep. After reading the article I've decided to make an appointment to speak to my doctor next week, however I'm not sure if he will take me seriously or not...am a bit worried he might suggest it's depression. I was just wondering if anyone had any suggestions on how to approach the subject. Am also concerned that he may think it strange that I've waited 16-17 years to mention it!

Since being diagnosed with Sleep Apnoea a string of other ailments have been diagnosed. A heart defect, high blood pressure, loss of hearing, depression, irritable time concept not as it was, I use to be exstremely organised now the complete opposite, water retension List could go on...

Could this be due to SA or could it be of always been there and just due to having the diagnoses of SA these syptoms have been recongised?

I do use the equipment which I was supplied with from the hospital while asleep.

Hello

Can anyone advice me on if Sleep aponea and require to use a cpap through out the night if they qualify for incapacity benefit or any other disability benefit. The reason why I am asking this is that one of the disability criteria on the benefit web site asks if you are able do a job for 8 hours. I am not sure if I could manage 8 hours without feeling exhausted.

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Reply from: Paula
Location: Wigan
Date: Wednesday 17th October 2007 at 04:52 PM
You may be entitled to a working disability benefit.I am currently working 16 hours aweek as that is all i can manage without getting tired.also i have found as my job is standing for the duration i dont fall asleep.but as soon as i do sit down I feel myself nodding off.When I get home I go to bed till the kids finish school.I am currently applying myself so give it a go.you never know.

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Reply from: Bob
Location: Leeds
Date: Wednesday 17th October 2007 at 07:55 PM
Hi Angel,
You won't get any incapacity or disability benefits just because you use a cpap machine.

It depending on what is making you tired. If it's a recognised illness or disability, then you may get some benefits, but you'll have to be examined by one of their doctors to qualify.

Hi bob wanted to ask another question.when i fall asleep at night i have no problems at all.then i feel like im awake but have the feeling im dreaming.and often i try to get up but find i cant move.I sometimes feel like im being held down.then when i do wake up it feels very real.could this be sleep paralisis.

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Reply from: Bob
Location: Leeds
Date: Wednesday 17th October 2007 at 06:07 AM
Hi Paula,
I don't have any trained medical knowledge, but the symptoms sound vaguely familiar. It's a very specialised subject and sleep paralysis is still not fully understood yet. General medical practitioners don't even get much training in this area, so it needs a sleep specialist to really diagnose this problem.

Does it only happen when you are waking up, or can it happen through the daytime?

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Reply from: Paula
Location: Wigan
Date: Wednesday 17th October 2007 at 04:35 PM
Hi and thanks for getting back to me.it happens during the day if i take a nap.but the strangest thing is, I feel myself going to sleep but then i can hear noises, and try to get up but i cant move.my legs feel like dead weights and my arms feel like they are pinned down.the only part of my body i feel like im moving is my head.As i try to get up.When i start to panic i start to feel really scared.then i feel like im going back to sleep and when i wake up i can move again.And then it feels like i dreamed all of it.but I feel exhausted and it seems too real.

Hi,my name is paula and i suffer from cataplexy.i collapse when i start laughing or when im angry and upset.when i do i collapse fully and lose all control of my facial muscles.it is ruining my life. i try not to laugh any more,and this makes me look boring and miserable.im getting married next year and i am frightened this will happen in church if i get nervous. or start laughing.my partner finds it funny but im not laughing any more.please help.if anyone knows of any successful treatment i would love to here from you.

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Reply from: Bob
Location: Leeds
Date: Wednesday 3rd October 2007 at 11:23 PM
Hi Paula,
It must be hard suffering from Cataplexy and most people can't understand what it would be like, including myself.

If your doctor can't do anything, I don't think there is any magical cure, as of yet. The United States are far ahead in their research in the use of drugs, but we're always way behind them.

As your partner knows all about your condition and is about to marry you, he must love you and that is all you need to worry about. If you pass out during the ceremony, they cound just continue (joke). But seriously, I would see your doctor to see if there is anything they could give you to calm you for the big day. I'm not sure whether they would do this, but it's worth asking about it.

My grown up daughter suffers with fits when she gets excited, but we just except it, as your family and partner will do.

I'd like to take this opportunity to wish you all the happiness in your future marriage to the lucky man.

I hope other Cataplexy suffers can add some additional content to this message, even if it is just moral support. Come on all Cataplexy suffers, get talking and give Paula a reply please.

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Reply from: Paula
Location: Wigan
Date: Thursday 4th October 2007 at 08:09 PM
Thanks bob for all your kind words.I have spoken to my doctor and i have had tests done for narcolepsy.get my results in November.so i will let you know how i get on.im also going into hospital soon to have my gall bladder removed,you know my nans fitter than me and shes 78. lol. I just feel like im falling to bits.and im only 33. look forward to hearing from you again and any cataplexy sufferers.

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Reply from: Tracy
Location: Coventry
Date: Sunday 4th November 2007 at 10:16 AM
Hi Paula.

I've been suffering from narcolepsy for over 10 years and now have been diaognosed last year at last I had all the proper tests done. I've noticed that the condition has progessed for me every 4 years as I have cataplexy and suffer from audial hallucinations and wake 3-4 times a night. I totally understand how you are feeling and what you are going through and I also feel like i'm falling apart i'm only 35 lucky for me I have 2 children without them I don't know where I'd be.

Wishing you all the best

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Reply from: Paula
Location: Wigan
Date: Monday 5th November 2007 at 09:56 PM
Hi tracy thanks for getting intouch.at least i know now i will have this condition for a long time to come, so i may aswell get use to it.lol i go to the hospital on wednesday so will let you know how i get on.I myself have 2 children.my partner and I have decided to have a small wedding as my fear of having an episode infront of everybody is getting stronger every day. I have recently started suffering with sleep paralasis.At first I thought i was being haunted.lol.Till a relative told me that this is also a part of narcalepsy in some suffers. Hope you keep intouch.thx for your support.

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Reply from: Tracy
Location: Coventry
Date: Tuesday 6th November 2007 at 10:30 AM
Hi ya Paula

Thanks for your reply. Whens your wedding? I really wouldn't worry about having a catapletic attack in front of everyone i'm sure they understand but its so weired because sometimes when I get angry with my children I have one then other times I don't, I always get one when i'm giving birthday presents for some strange reason lol. You made me laugh when you mentioned your sleep paralasis which I know it isn't funny but when I first had an audial hallucination back in September I woke up hearing the sounds of a football ground, the chanting, cheering etc well it got that much that I got up and woke my brother up down stairs and shouted "Paul can you hear that" he replied "no" so I went back to bed but it carried on so I woke my eldest son up who also couldn't hear a thing and it really scared me. The second one I had was in the middle of September and I woke up hearing people shouting but this time was differant because as I woke I knew what I was hearing i'd been dreaming about which also do you get really vivid, weired dreams?

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Reply from: Paula
Location: Wigan
Date: Monday 19th November 2007 at 10:24 PM
Yes yes and yes.lol. hi tracy.sorry not got back to you sooner had problem with laptop and then internet started playing up.lol.I remember waking up once and i could hear kids singing but only on my left side.and the dreams i have had.well ill tell you the latest.I was rubbing my foot when i saw something sticking out the side .So i pulled it and i pulled a bone out.my foot went very limp.when i woke up i flung the quilt back and rubbed my foot. it felt so real.but I do have a reaccuring dream that im pregnant and i have a little girl.but in real life i know this aint possible as i have had a hysterectomy.Well whilst i made you laugh last time you will love this one.I went to my parents house with daniel (my other half) and we had a few beers and decided to play poker.to all cateplexy suffers please note DONT PLAY POKER.its a dead give away when you slump in the chair when you have a good hand.for some reason everyone folds.lol. Anyway my wedding is on the 7th june. Not picked my dress yet want to get hospital out the way first.I go in on the 3rd dec to have my gall bladder removed.hope to hear from you soon.take care.and remember dont play poker.lol.x

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Reply from: Nicki Dixon
Location: London
Date: Monday 28th January 2008 at 02:15 PM
Hi Paula,

I hope your wedding preparations are going well ;)

I thought i would reply to you directly as you may have seen from my posting above i am currently looking for narcolepsy/cataplexy sufferers to feature in a new television documentary series about the brain.

If you would be at all interested in talking to me, I would be really interested in hearing your story.

Best wishes,

Nicki

(nickidixon at itv.com) 0207 261 3521

What are your views on the flu jab if you are using a cpap?

I am debating if I should approach my gp and ask about it due to having sleep apnoea along with a recently developed heart murmer. At present I am aneamic on iron tablets and find it very difficult to use the cpap should I have a cold so who knows what I would be like if I went down with the flu.

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Reply from: Bob
Location: Leeds
Date: Friday 28th September 2007 at 10:24 AM
Hi Pat,
Try asking your district or doctor's surgery nurse first. They seem to be more understanding than some doctors. I've had a bad cold at the time when I had a cpap machine, and you just can't use it.

It will depend on how severe they think your condition is, and doctors have very different opinions, especially older doctors. If you can walk, you're ok.

I was offered the flu jab by my district nurse without having to ask, and have been getting it for about 5 years now. I don't have any heart condition, just a tracheostomy. And as my wife is classed as my carer, she gets it too.

Don't hang about though, as some people purchase it, and supplies don't always stretch to everyone.

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Reply from: Pat
Location: Newcastle
Date: Friday 28th September 2007 at 10:24 PM
Thank you Bob for your reply. I will contact my doctor surgery nurse this next week and ask for their advice. I am also a carer for my autistic son so I do need to make sure I am well as possible so I can meet up to his every day demands