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#1 Damian

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Posted 07 August 2008 - 06:46 AM

Hello,
Im posting this as a topic see who else is appauled by the lack of support that we are offered:


I am myself absolutley livid with this issue, angry.gif I experienced this first hand in the past month. when I turned up at local GP asking for some time of HELP, the dreams and paralysis were getting to much to handle I was IMMEDIATLY REFERRED FOR PSYCHIATRIC

EVALUATION at Tameside, accident and emergency, to where I wa assessed then sent away after 2 hours, with a 24 hour support number.
The following in night I woke up fearing for my live. I mean this was different . I was in my house with all theses people trying to get in, to cause injury to myself and family members, they got in. I could see them as they attack parents in next room to me, then across the landing to my bedroom door where they entered my room and they were coming for me, one of the people lent over me and was holding me down by shoulders as others were walking in my room. I wanted to wake up so much when I did I was in paralysis with the fear that these people were still here, when paralysis past it took me a good five minutes and a bat to venture to the landing to check on my parents. when I got in there room and realised they were okay, my emotions took over starting crying and had a cat attack which awoke my dad. sad.gif
I'M 27 never woke my dad since is was about 10, he immediatly tried to comfort me and understand why I was in this state. He rung the 24 hour number for support that we were given. Just to be told and I quote.

" I CANNOT HELP YOU, YOU WILL HAVE TO COME BACK TO A&E" huh.gif

So we did.
Got there what happened physc assessment number 2
which again lasted a couple of hours then he said.
"I do not have a full understanding of this and unfortunatly have no answers."
sent me home.
what was the point.
Now because I did this I am classed as "suicidle with potential risk of harm to others or myself" HAD MY PRESCRIPTIONS DROPPED FROM MONTHLY TO FORTNIGHTLY TO REDUCE THE RISK OF ME TAKING EXTRA. ohmy.gifblink.gif
Biggest load of crap there is.
I want to live, I LOVE the people around me. I couldn't ask for a better family. tongue.gif
All this cause I asked for HELP.
I am going to prove today when I attend a specialist at 14:55 that If ask for support he will tell to go on UKAN.
If the specialist don't have a clue what are we ment to do!!!!!!!!!!!!!!!!!!!!!
I have had more support from members of NNC and people from US. Thanking you all

so for me I don't get reassurance just piled with more meds.
A: From local GP
B: From the specialists

If this is support Im glad I ain't a bridge cause I would of collapsed along time ago.



#2 Lovemyhusband

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Posted 07 August 2008 - 01:49 PM

(((HUGS)))

After reading your post I had such a strong urge to hug you, so thats what I did. I have always thought the best place to seek help is with those who understand you and your condition. It's just to bad we don't have enough people in the medical field with the passion for finding and answer for N. If only we could give them a swift kick to get them started.



#3 bagpuss

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Posted 07 August 2008 - 02:52 PM

BOOTS ARE ON AND LET THE KICKING BEGIN. GOT TO THE STAGE NOW THAT IM FED UP WITH HAVING TO FIGHT FOR JUST THE SIMPLE THINGS. THE FIRE IN MY BELLY IS BACK . GOD HELP THE MEN IN WHITE COATS . BIG HUG AND LOTS OF LOVE XX

#4 Lais02

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Posted 07 August 2008 - 05:03 PM

Wow... I'm so sorry this happened to you. I think we all understand what its like to be treated that way. N is tough to understand and I agree I've been shocked too my some specialists. My first sleep doctor was a joke... and I've been to 3 in the last year. Keep searching for the one who does UNDERSTAND and CARE.

For me NN is the best support I've found and I love everyone on here smile.gif

Keep posting Damian!!! We're all here for you.

#5 Damian

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Posted 13 August 2008 - 01:00 PM

QUOTE (Lais02 @ Aug 7 2008, 10:03 PM) <{POST_SNAPBACK}>
Wow... I'm so sorry this happened to you. I think we all understand what its like to be treated that way. N is tough to understand and I agree I've been shocked too my some specialists. My first sleep doctor was a joke... and I've been to 3 in the last year. Keep searching for the one who does UNDERSTAND and CARE.

For me NN is the best support I've found and I love everyone on here smile.gif

Keep posting Damian!!! We're all here for you.

thankyou all for the replys, been trying to get life on track a bit better. Okay I am currently trying to get another doctor and specialist but it all takes time

#6 Damian

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Posted 13 August 2008 - 01:00 PM

QUOTE (Lais02 @ Aug 7 2008, 10:03 PM) <{POST_SNAPBACK}>
Wow... I'm so sorry this happened to you. I think we all understand what its like to be treated that way. N is tough to understand and I agree I've been shocked too my some specialists. My first sleep doctor was a joke... and I've been to 3 in the last year. Keep searching for the one who does UNDERSTAND and CARE.

For me NN is the best support I've found and I love everyone on here smile.gif

Keep posting Damian!!! We're all here for you.

thankyou all for the replys, been trying to get life on track a bit better. Okay I am currently trying to get another doctor and specialist but it all takes time

#7 Henry G

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Posted 14 August 2008 - 03:05 PM

UK is bad when it comes to NN. embarrasingly so.

It took roughly 5 years to persuade my GP I have a sleep problem - at the time it was another GP. She thought I was mad, never heard of "narcolepsy" and thought my trying to get Provigil was because I was some speed-freak. She wanted to refer me to a psychiatrist .. the usual story. What an idiot , I am happy she left her practise or moved on.

My next and current GP - took my plea and referred me to a Hospital. Like a Lung Hospital, great. So Narcolepsy is their part-time thing. I gave up in the end because I didn't feel confident , I could sense most doctors weren't really professionals - I was some sort of practising guinea pig. I didn't want to be part of an experiment - enough.

So now no treatment.

There is a private sleep clinic in London, but they are prohibitively expensive.

I can't stop thinking how my life would improve considerably if I was properly cared for medically.

In Brazil (my mother is there) I get proper treatment - but I don't live there. So only once a year I see the doctors. They are truly superb. That is what I call professionalism.

I met a person in London that mentioned his brother suffers from N.

So I told them to improve his quality of life, he should have a doctor that takes him seriously and prescribe things accordingly (not force things down his throat but never listening)

Also it should be standard practice that all narcoleptics should have counselling. Depression makes part of N. And N is a big trauma.

So I went back to my GP and said if it's possible for me to have counselling at a time when things where so bleak I kept having thoughts of jumping into the river. My electricity was going to be cut off - and I had no money even to eat/

She told me because I never jumped I was OK then and don't need counselling. What a catch 22!

I mean all N's know but I am saying this to the doctors that end up reading here.

So here is for the UK doctors:

It is not sympathy Narcoleptics are after - it is respect and proper treatment.

Narcoleptics are not manic depressives - when if ever will you get this idea out of your heads? Narcolepsy is not our escape mechanism for how long will you remain bigots?

I don't know what made you (doctor) enter your profession. Whether it was family tradition or the glory attached to it. Maybe the money? Lots of money - too much money really.

Now if those weren't the reasons you joined the medical profession.
If you are a true decent human being, if it was out of compassion and empathy - then take Narcoleptics and Narcolepsy seriously.

Don't treat Narcolepsy as your past-time hobby, your niche, a trendy fad - to impress your peers.

Try to excel at what you do - take pride in being a true professional a true compassionate human being, seriously = try and make a difference to these people.

You have the power to truly improve the lives of many individuals but you choose not to. You escape your obligations.

While most of us suffer from Narcolepsy and would love to be continuously vigilant - you do possess a brain but refrain from using it - you are too lazy or apathetic to even "think".

#8 Kimberly

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Posted 15 August 2008 - 09:28 PM

Damian and Henry,

What frustration and despair you must be feeling -- here in the states we always think of the UK as an industrialized nation, as our equals in Europe, but the description of your experiences really spurs my sympathy and prayers that the outlook for Narcolepsy treatment in Britain will improve.

In the meantime, I found a website for the European Sleep Research Society http://www.esrs.eu/c...ont_content.php . I did find the contact information for someone in the UK that is on their board.

Assistant Secretary

Prof. Debra Skene
School of Biomedical and Molecular Sciences
University of Surrey
Guilford, GU2 7XH, UK

phone: +44 1483 686401
fax: +44 8701 99175

email: d.skene@surrey.ac.uk

Perhaps this woman will have connections or referrals for you to medical practitioners that have a better understanding of Narcolepsy. There is also a member of their scientific committee -- without contact information:

There's also an excel file with a list of sleep research centers and there are a number listed in the UK : http://www.esrs.eu/c...labs_070401.xls

Contact information for some members can be found in their most recent newsletters. I don't know if they're doctors or just researchers, but if any of them are in your area you might want to reach out to them to see if they could refer you to a medical practitioner that is more understanding about Narcolepsy:


Gillian Twigg, PhD

Imperial College Healthcare, Sleep Cenre, Charing Cross Hospital, Fulham Palace Road, W6 8RF London, United Kingdom

phone: +44 208 846 7188, fax: +44 208 846 7172

e-mail: gillian.twigg(a)imperial.nhs.uk




Steven Thomas

Sleep Medicine, The James Cook University Hospital, Marton Road, Middlesbrough, TS4 3BW Cleveland, United Kingdom

phone: +44 1642 282 533, fax: +44 1642 854 246

e-mail: stephen.thomas(a)stees.nhs.uk





Alex Dregan, Mc

Sociology, University of Surrey, , GU2 7XH Guildford, United Kingdom

phone: +44 1483 6639 66, fax:

e-mail: a.dregan(a)surrey.ac.uk





Allen Davey, MA

British Snoring & Sleep Apnoe Association, Castle Court, 41 London Road, Reigate, RH2 9RJ Surrey, United Kingdom

phone: +44 1737 245638, fax: +44 870 052 9212

e-mail: allen(a)britishsnoring.co.uk





Marianne Davey, MSc

British Snoring & Sleep Apnoe Association, Castle Court, 41 London Road, Reigate, RH2 9RJ Surrey, United Kingdom

phone: +44 1737 245638, fax: +44 870 052 9212

e-mail: marianne(a)britishsnoring.co.uk





Jacqueline Bennett

Sleep Medicine, The James Cook University Hospital, Marton Road, Middlesbrough, TS5 8SU Cleveland, United Kingdom

phone: +44 1642 282 533, fax: +44 1642 854 246

e-mail: jacqueline.bennett(a)stees.nhs.uk





Katrin Ackermann, Dr.

Chronobiology Research Group, University of Surrey, EHMS, A4 Boulding, GU2 7XH Guildford, United Kingdom

phone: +44 1483 683341, fax:

e-mail: k.ackermann(a)surrey.ac.uk



Chris Alford, PhD

Psychology, Faculty of applied Sciences, University of West of England, Frenchay Campus, Coloharbour Lane, BS16 1QY Bristol, United Kingdom

phone: 44 117 328 2191, fax: +44 117 328 2904

e-mail: chris.alford(at)uwe.ac.uk





Simon Archer, Dr. PhD

Biomedical + Molecular Sciences, University of Surrey, , GU2 7XH Guildford, United Kingdom

phone: +44 1483 686408, fax: +44 8701 320528

e-mail: simon.archer(at)surrey.ac.uk





Ramesh Ghiassi, MSc

West London Sleep Centre, Imperial College London and Hammershmith Hospitals NHS Trust, Fulham Palace Rd., Hammersmith, W6 8RF London, United Kingdom

phone: +44 208 846 1356, fax: +44 208 846 7999

e-mail: r.ghiassi(at)imperial.ac.uk




Alexandra Holmes, PhD

Clockwork Research Ltd., 21 Southwick Mews, W2 1JG London, United Kingdom

phone: +44 20300 86486,

e-mail: alex(at)clockworkconsultants.com





Osman Ebrahim Irshaad, MD

The London Sleep Centre, , 137 Harley Street, W1G 6BF London, United Kingdom

phone: +44 20 772 50523,

e-mail: isrhaad.ebrahim(at)londonsleepcentre.com





Marc Lefevre, DDS

2, Harley Street, W1A 9PG London, United Kingdom

phone: +44 207 436 6196,

e-mail: dlefevre(at)club-internet.fr





Abubacker Siddiq Pulakal, MRCP

Regional Sleep Service, Wythenshawe Hospital, Southmoor Road, Wythenshawe, M23 9LT Manchester, United Kingdom

phone: +44 161 291 2569, fax: +44 161 291 4961

e-mail: aspulakal(at)hotmail.com




Helen Clare Thorne

Neuroendocrinology Group, SBMS University of Surrey, , GU2 7XM Guildford, United Kingdom

phone: +44 1483 68 33 41,

e-mail: h.thorne(at)surrey.ac.uk




Sophie Wehrens, MSc

Neuroendocrinology, School of Biomedica. & Molecular Sciences, University of Surrey, GU2 7XM Guildford, United Kingdom

phone: +44 1483 683341,

e-mail: sophie.wehrens(at)surrey.ac.uk





Yvonne Gabriele Winkler, Dr. rer.soc.

21 The Boltons, SW10 9S4 London, United Kingdom

phone: +44 207 244 1810, fax: +44 207 244 1811

e-mail: yvonne(at)winkler.org.uk





Marcos Bote, Dr.

Sociology, University of Surrey, , GU2 7XH Guildford, Surrey, United Kingdom

phone: +44 1483 683763, fax: +44 1483 689551

e-mail: m.bote(at)surrey.ac.uk




Jason Ellis, PhD

Department of Psychology, University of Surrey, , GU2 7XH Guildford, United Kingodm

phone: +44 1 48368, fax: +44 1 483689553

e-mail: j.ellis(at)surrey.ac.uk





Prof. Jim Horne

Dept. of Human Sciences

Univ. of Technology

Loughborough University

Loughborough Ceics, LE 11 3TU, UK

phone: +441509223004

fax: +441509223940

email: j.a.horne@lboro.ac.uk


There is also a British Sleep Society - http://www.sleeping....nts/homefrm.htm . I couldn't find any contact information, but it could be a helpful source as well.

I am so glad that you found this site and that we can exchange support "across the pond" but I know how important it is to have doctors that understand your condition that you can see on a regular basis as well.

Hope this helps!

Kimberly




#9 Henry G

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Posted 19 August 2008 - 02:27 PM

Hi Kimberly

Thank you very much for the data.

I've copied it all - and I will research and/or pursue each institution or professional individually.

#10 bagpuss

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Posted 20 August 2008 - 05:57 AM

THANKYOU THANKYOU THANKYOU KIMBERLY FOR YOUR TIME AND EFFORT smile.gif

#11 Damian

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Posted 20 August 2008 - 07:12 AM

QUOTE (bagpuss @ Aug 20 2008, 10:57 AM) <{POST_SNAPBACK}>
THANKYOU THANKYOU THANKYOU KIMBERLY FOR YOUR TIME AND EFFORT smile.gif



Thankyou very much for that Kimberly appreciate the time you took to put the information on for us all.

#12 Sam.Toombs

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Posted 08 September 2008 - 06:01 AM

Department of Sleep Medicine

The James Cook University Hospital

Marton Road

Middlesbrough

TS4 3BW

Dr P Reading Tel 01642 850850

Fax 01642 854246

Secretary Tel 01642 282513

This is the info i have for the doctor i was referred to - this guy is, i think i am right in saying, the top guy in the UK for N. i refer to him as SuperDoc - he is really good and really knows his stuff. I was referred from Sheffield and it was quite a trek but i just thought i would let you know about him as he helped me a lot - he might be able to help you as well - i do not know how you would go about getting his attention though

Sam


#13 too exhausted

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Posted 08 September 2008 - 11:12 AM

QUOTE (Sam.Toombs @ Sep 8 2008, 12:01 PM) <{POST_SNAPBACK}>
Department of Sleep Medicine

The James Cook University Hospital

Marton Road

Middlesbrough

TS4 3BW

Dr P Reading Tel 01642 850850

Fax 01642 854246

Secretary Tel 01642 282513

This is the info i have for the doctor i was referred to - this guy is, i think i am right in saying, the top guy in the UK for N. i refer to him as SuperDoc - he is really good and really knows his stuff. I was referred from Sheffield and it was quite a trek but i just thought i would let you know about him as he helped me a lot - he might be able to help you as well - i do not know how you would go about getting his attention though

Sam


I have heard of Dr Reading (Middlesbrough) and I was told that he is brilliant and really listens to you. You could ask your GP if you could be referred to this specialist as my GP says it makes sense to see the same person all the time and one who has an in depth understanding of the condition. It is always worth a try. If this does not work then contact Middlesbrough yourself.


#14 ElliottS

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Posted 23 September 2008 - 09:22 AM

I regretably have not been on this site for a long time.....but reading your post has stirred up many feelings, in fact please bear with me as maybe a long post! Hope you don't mind ?

With regards to your treatment I am shocked and appalled angry.gif there are no excuses for the so called 'professionals' to deal with your case in such a feckless and damaging manner and good on you for sticking to your guns. Don't let 'em get you down!

It may well be worth considering making a formal complaint to your PCT, or even contacting your local MP - a long process which may feel like banging head against wall but may shake up your case to get some action.

I Have been very lucky in comparrison to you, I was diagnosed at an early age but that was hard work to get an official diagnosis but I'm talking nearly 15 yrs ago here ! But even with refferals for the first decade or so to general neurologists who did not know much at all about the condition I came to realise that just having the status of being an out-patient helped in the latter years for things such as benefits. I have been on DLA on medium rate for about 5 yrs and when I was working I was able to claim Tax Credit through disability (I have no kids BTW). I have previously claimed incapacity for a short period. Also I am currently a full time 2nd yr student studying for a degree and have been given a brand new computer, printer, scanner lots of extras (ie a dictaphone if nod off in lectures is one of the extras) through disability status given via DLA and having a consultant.

Ok bully for you, you maybe thinking...... but in a nut shell I managed to work the system & I am lucky enough to have found ways and means to do so, aswell as the stubborness in nature not give up (even though at times I feel like I do). But to be completely honest I have felt on my own the whole time so thought OK....no one will help me so stuff'em (the system that is) will help myself & be so annoying that I will get the little I'm entitled to but I WILL GET IT!

I did not realise how little advise, help or guidence people are getting out there with N &/or C. I'm not trying to blow my own trumpet - anything but - what I am trying to say it has taken me years of blood sweat and tears (emphasis on tears)to get limited help and it is unfortunately the experiences such as yours that are just not good enough how dare 'they' put you, your family & friends in such an awful position !

I think that we are all fed up and I don't know about you, but I feel responsible for making sure such terrible support networks in the UK at least become a thing of the past!

Where to start or how to go about it I'm not sure but I have decided that enough is enough - things need to be shaken up BIG TIME !!!!!!! What do you think?

Finally.....Phew.....I can hear you say....I had a similar experience re: sleep paralysis except I thought I was being abducted by aliens, I had to be treated for shock after my mum had to call the emergency doctor ! But the one that gets me the most is similar to you: someone in the house walking around.... then this is the freaky bit - they stroke my head or feel being attacked....all horrid & very traumatising.

Oh BTW....re:Kimberly's list of consultants & Dr's - at one time I did not have a consultant due to being lost in system & I had to wait for another referral from GP to a new consultant I got fed in up process so I contacted Osman Ebrahim Irshaad, MD (on Kimberly's list) he was really helpful and invited me to see him on an NHS (FREE) clinic that he ran at that time. It could be worth contacting him to see if he is able to help you ???


Best wishes & hope to hear from you soon
Sarah tongue.gif


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Posted 25 September 2008 - 03:21 AM

I've seen this doctor too and he was really helpful, and very aware of the problems that can be caused by poor treatment and by not being taken seriously. Talks to you like you are a real person! I think his last name is Ebrahim.

#16 bagpuss

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Posted 27 September 2008 - 10:58 AM

QUOTE (ElliottS @ Sep 23 2008, 03:22 PM) <{POST_SNAPBACK}>
I regretably have not been on this site for a long time.....but reading your post has stirred up many feelings, in fact please bear with me as maybe a long post! Hope you don't mind ?

With regards to your treatment I am shocked and appalled angry.gif there are no excuses for the so called 'professionals' to deal with your case in such a feckless and damaging manner and good on you for sticking to your guns. Don't let 'em get you down!

It may well be worth considering making a formal complaint to your PCT, or even contacting your local MP - a long process which may feel like banging head against wall but may shake up your case to get some action.

I Have been very lucky in comparrison to you, I was diagnosed at an early age but that was hard work to get an official diagnosis but I'm talking nearly 15 yrs ago here ! But even with refferals for the first decade or so to general neurologists who did not know much at all about the condition I came to realise that just having the status of being an out-patient helped in the latter years for things such as benefits. I have been on DLA on medium rate for about 5 yrs and when I was working I was able to claim Tax Credit through disability (I have no kids BTW). I have previously claimed incapacity for a short period. Also I am currently a full time 2nd yr student studying for a degree and have been given a brand new computer, printer, scanner lots of extras (ie a dictaphone if nod off in lectures is one of the extras) through disability status given via DLA and having a consultant.

Ok bully for you, you maybe thinking...... but in a nut shell I managed to work the system & I am lucky enough to have found ways and means to do so, aswell as the stubborness in nature not give up (even though at times I feel like I do). But to be completely honest I have felt on my own the whole time so thought OK....no one will help me so stuff'em (the system that is) will help myself & be so annoying that I will get the little I'm entitled to but I WILL GET IT!

I did not realise how little advise, help or guidence people are getting out there with N &/or C. I'm not trying to blow my own trumpet - anything but - what I am trying to say it has taken me years of blood sweat and tears (emphasis on tears)to get limited help and it is unfortunately the experiences such as yours that are just not good enough how dare 'they' put you, your family & friends in such an awful position !

I think that we are all fed up and I don't know about you, but I feel responsible for making sure such terrible support networks in the UK at least become a thing of the past!

Where to start or how to go about it I'm not sure but I have decided that enough is enough - things need to be shaken up BIG TIME !!!!!!! What do you think?

Finally.....Phew.....I can hear you say....I had a similar experience re: sleep paralysis except I thought I was being abducted by aliens, I had to be treated for shock after my mum had to call the emergency doctor ! But the one that gets me the most is similar to you: someone in the house walking around.... then this is the freaky bit - they stroke my head or feel being attacked....all horrid & very traumatising.

Oh BTW....re:Kimberly's list of consultants & Dr's - at one time I did not have a consultant due to being lost in system & I had to wait for another referral from GP to a new consultant I got fed in up process so I contacted Osman Ebrahim Irshaad, MD (on Kimberly's list) he was really helpful and invited me to see him on an NHS (FREE) clinic that he ran at that time. It could be worth contacting him to see if he is able to help you ???


Best wishes & hope to hear from you soon
Sarah tongue.gif



NICE TO HAVE YOU BACK rolleyes.gif

#17 bagpuss

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Posted 30 September 2008 - 04:12 AM

O MY GOD . I HAVE JUST COME BACK FROM SEEING.DR.P.READING. AND WE ALL KNOW WHAT I THINK OF PEOPLE IN WHITE COATS AND THERE PILLS....WELL HE IS THE BEST EVER ,HE IS BRILL ,HE LISTENS,HE TALKS, HE GOES OVER EVERYTHING.HE IS THE 1ST DOCTOR THAT I BELIEVE IN,HE HAS GIVEN ME HOPE. IT WAS WELL WORTH THE LONG 8 HOUR TRIP.I KNOW A COUPLE OF YOU ALREADY HAVE SEEN HIM AND WILL UNDERSTAND WHY I AM ON A HIGH.LOL BUT HE IS ON OUR SIDE AND WILL HELP US IN ANY WAY THAT HE CAN XX

#18 Kirstie

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Posted 13 October 2008 - 01:28 PM

QUOTE (Damian @ Aug 7 2008, 12:46 PM) <{POST_SNAPBACK}>
Hello,
Im posting this as a topic see who else is appauled by the lack of support that we are offered:


I am myself absolutley livid with this issue, angry.gif I experienced this first hand in the past month. when I turned up at local GP asking for some time of HELP, the dreams and paralysis were getting to much to handle I was IMMEDIATLY REFERRED FOR PHYSC EVALUATION at Tameside, accident and emergency, to where I wa assessed then sent away after 2 hours, with a 24 hour support number.
The following in night I woke up fearing for my live. I mean this was different . I was in my house with all theses people trying to get in, to cause injury to myself and family members, they got in. I could see them as they attack parents in next room to me, then across the landing to my bedroom door where they entered my room and they were coming for me, one of the people lent over me and was holding me down by shoulders as others were walking in my room. I wanted to wake up so much when I did I was in paralysis with the fear that these people were still here, when paralysis past it took me a good five minutes and a bat to venture to the landing to check on my parents. when I got in there room and realised they were okay, my emotions took over starting crying and had a cat attack which awoke my dad. sad.gif
I'M 27 never woke my dad since is was about 10, he immediatly tried to comfort me and understand why I was in this state. He rung the 24 hour number for support that we were given. Just to be told and I quote.

" I CANNOT HELP YOU, YOU WILL HAVE TO COME BACK TO A&E" huh.gif

So we did.
Got there what happened physc assessment number 2
which again lasted a couple of hours then he said.
"I do not have a full understanding of this and unfortunatly have no answers."
sent me home.
what was the point.
Now because I did this I am classed as "suicidle with potential risk of harm to others or myself" HAD MY PRESCRIPTIONS DROPPED FROM MONTHLY TO FORTNIGHTLY TO REDUCE THE RISK OF ME TAKING EXTRA. ohmy.gif blink.gif
Biggest load of crap there is.
I want to live, I LOVE the people around me. I couldn't ask for a better family. tongue.gif
All this cause I asked for HELP.
I am going to prove today when I attend a specialist at 14:55 that If ask for support he will tell to go on UKAN.
If the specialist don't have a clue what are we ment to do!!!!!!!!!!!!!!!!!!!!!
I have had more support from members of NNC and people from US. Thanking you all

so for me I don't get reassurance just piled with more meds.
A: From local GP
B: From the specialists

If this is support Im glad I ain't a bridge cause I would of collapsed along time ago.



Hi

My husband, Guy was diagnosed with Narcolepsy and Hypersomnia in July after a traumatic childhood and many years of suffering as people and even his family just thought that he was 'lazy', (he has now been prescribed Modafinil 200mg twice a day and Clomipramin for the sleep paralysis but after 3 months on Modafinil it doesn't seem to be as affective and are told that we can't up the dose). We thought it would come as a relief to finally have someone confirm the illness but it has come at a price, one being that it is now in black and white on his medical records. We are both going through a flood of emotions at the moment but Guy is finding it immensely difficult to deal with, he is angry that it has taken so long to diagnose, depressed and sad that he feels like he fails or can't compete in every day life (especially in work), this has had a massive effect on his confidence and mental attitude.

One minor positive is that we have finally found an excellent consultant, Dr Dennis in Sheffield, who is the first person we have spoken to that hasn't laughed when describing the symptoms - try explaining to someone how intensely frightening sleep paralysis is, only now am I starting to have some understanding of it but as Guy said I will never truly know what it's like because I don't have Narcolepsy, I can only empaphise and realise that it is far worse than any nightmare I have ever had. Guy has described similar hallucination and sleep paralysis to what you have described, even remembering vivid incidents from when he was a child.

At the moment we both feel very isolated, as there seems to be little or no support network in the UK, Guy is desperate to talk to people in similar situations and I too would be forever grateful if any spouses or family members living with Narcolepsy sufferers would like to chat with me - we are both at breaking point and really desperately need to know that there are other people who are going through the same and if any of this group meet up to talk about issues we would really like to join. My email is koorsty@hotmail.com if anyone wants to email me or just post a reply to this. Thanks

#19 angellus

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Posted 13 October 2008 - 04:50 PM

QUOTE (Kirstie @ Oct 13 2008, 02:28 PM) <{POST_SNAPBACK}>
Hi

My husband, Guy was diagnosed with Narcolepsy and Hypersomnia in July after a traumatic childhood and many years of suffering as people and even his family just thought that he was 'lazy', (he has now been prescribed Modafinil 200mg twice a day and Clomipramin for the sleep paralysis but after 3 months on Modafinil it doesn't seem to be as affective and are told that we can't up the dose). We thought it would come as a relief to finally have someone confirm the illness but it has come at a price, one being that it is now in black and white on his medical records. We are both going through a flood of emotions at the moment but Guy is finding it immensely difficult to deal with, he is angry that it has taken so long to diagnose, depressed and sad that he feels like he fails or can't compete in every day life (especially in work), this has had a massive effect on his confidence and mental attitude.

One minor positive is that we have finally found an excellent consultant, Dr Dennis in Sheffield, who is the first person we have spoken to that hasn't laughed when describing the symptoms - try explaining to someone how intensely frightening sleep paralysis is, only now am I starting to have some understanding of it but as Guy said I will never truly know what it's like because I don't have Narcolepsy, I can only empaphise and realise that it is far worse than any nightmare I have ever had. Guy has described similar hallucination and sleep paralysis to what you have described, even remembering vivid incidents from when he was a child.

At the moment we both feel very isolated, as there seems to be little or no support network in the UK, Guy is desperate to talk to people in similar situations and I too would be forever grateful if any spouses or family members living with Narcolepsy sufferers would like to chat with me - we are both at breaking point and really desperately need to know that there are other people who are going through the same and if any of this group meet up to talk about issues we would really like to join. My email is koorsty@hotmail.com if anyone wants to email me or just post a reply to this. Thanks


I would be grateful if i had someone to be isolated with.. I live alone. The conference was a great booster.. im just hoping the new perscriptions can set me up a little better for consistency..

there are several places to talk.. here facebook and www.talkaboutsleep.com

#20 hathor

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Posted 18 October 2008 - 01:00 PM

Department of Sleep Medicine
The James Cook University Hospital

Marton Road

Middlesbrough

TS4 3BW

Dr P Reading Tel 01642 850850

Fax 01642 854246

Secretary Tel 01642 282513

This is the info i have for the doctor i was referred to - this guy is, i think i am right in saying, the top guy in the UK for N. i refer to him as SuperDoc - he is really good and really knows his stuff. I was referred from Sheffield and it was quite a trek but i just thought i would let you know about him as he helped me a lot - he might be able to help you as well - i do not know how you would go about getting his attention though

Sam




I used to see this doc!!! he is a really good doc. i actually looked forward to seeing him. he was doin a lecture when he worked at the hospital i go to and asked if i could help him so i went along and had to tell a room full of people what its like to have narcolepsy!!! i was so gutted last time i went to hospital because he was gone and another doc had taken his place. i had to see one of his colleges who didnt even beleive me i had narcolepsy and cataplexy even tho she had my file in front of her!!! the doc she was working under dicharged me as if he couldnt be bothered, so i dont want to have to go back to hospital if i know he will be there as im used to having the best doctors on narcolepsy.
For the person who had to see psych people i feel so sorrry for the way you have been misunderstood!!! that is an awful situation. its been abut 18 yrs since i was diagnosed bt i still remember it well. the doc more or less knew straight away what was wrong with me and so he just had to get results from a test to confirm it!!it all happened really fast. however after yrs of test and seeing docs, i have never been told where to find support. i too live in the uk and have never met anyone else with narcolepsy, it is so frustrating knowing people have it but having to deal with it on my own!!!!