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Author Topic: Can anyone recommend any insomnia support groups?  (Read 524510 times)

Offline Misty

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« Reply #800 on: 23/10/2007 20:52:07 »
Hi there one and all! :)
I have just found this forum today and I can't begin to tell you how good it is to know that I am not the only one suffering with this condition, sad though it is to know there are so many of us and that there is no support group for us insomniacs.

I have suffered from this since my middle teens (now early 50s), so like Neil, have had years of living with this problem.  I have never got used to/accepted this as I really  need my sleep.  I have tried just about everything incluuding homoeopathy and acupuncture (I admit I only had two sessions of this and perhaps should have given it longer).  I would love to have given Mei's study a go, but found this forum too late.  I have not been to sleep clinics or anything of that nature, although am starting to think maybe I should try to get on one (I work for the NHS!)

I sometimes go for up to five days without sleep and wonder how I manage to stay upright, let alone work, drive and carry on living a normal life.  So many of your comments ring true with me too.  The less I sleep the more hyped up I feel.  I get panicky sometimes in the middle of the night, worried about not sleeping when I have work the next day.  I have had to drop to part time to cope with the lack of sleep [:-'(]

Sorry to bore you all, but it is just so good to let off steam at others who understand.  Those who have never experienced this just don't understand (my partner being one!) what they take for granted. 

I'll be taking a Zopiclone tonight as I have gone for three nights this week with no sleep and I desperately need some zzzzzzzzzzzzzz.  I refuse to take them on a regular basis.  Has anyone tried melatonin?  Does it help and how much can one take (I've tried talking to a pharmacist about the doseage, but because it's not licenced in the UK, she was not sure). 

May also try the acupuncture again.  Neil did it work for you?

Hope some of you at least get some zzzzzzzzzzzs tonight.xxxxxxxxxxxx

 
 

Offline neilep

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« Reply #801 on: 23/10/2007 21:16:20 »
HI Misty,

WELCOME.

Yes, I have tried Melatonin.....I could "feel" the effect for a while though the effect soon wore off...it was a strange phenomena...I was on it for 3- 6 months and (as you know) it is not available over the counter here in the UK so I was prescribed a course via a specialist.

the sad thing was that because I failed to show any viable effect from it I was summarily dismissed from treatment !!..I really felt dejected !!...it was if I was told ' you can't be helped....there's the door...goodbye '.......At that time the diagnosis what that I had a thing called "Phased Delay Syndrome"...ie: my body clock was all messed up !


Misty...I have had only four sessions at the acupuncture clinic with two more to go........Realistically speaking...I have been advised that I should try it for a minimum of six months on a weekly basis !!

At this point in time there is no obvious effect.

I have never heard of zoplicone...*hang on...goes to Wikipedia it  (http://en.wikipedia.org/wiki/Zopiclone)....Ahh...yes yes ..I do know it !!

I remember when it was first introduced it was heralded as a wonder drug because it was fairly quick acting with little side effects the following day...I tried it under the brand name Sonata.....and..I had a BAD reaction to it...had to stop it immediately !!

Have you tried CBT ? (cognitive behavioral therapy)
Homeopathic and naturapathic remedies at all ?

Misty...I need my sleep too....but having taken a leap of faith and accepted it..I have found that I do in fact cope a lot better nowadays.

You really should press your GP to arrange a sleep study...they just wonlt take it seriously unless you makes them !!

All, I can do is wish you well Misty.
« Last Edit: 23/10/2007 21:18:40 by neilep »
 

Offline Karen W.

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« Reply #802 on: 24/10/2007 07:19:12 »
Hi there one and all! :)
I have just found this forum today and I can't begin to tell you how good it is to know that I am not the only one suffering with this condition, sad though it is to know there are so many of us and that there is no support group for us insomniacs.

I have suffered from this since my middle teens (now early 50s), so like Neil, have had years of living with this problem.  I have never got used to/accepted this as I really  need my sleep.  I have tried just about everything incluuding homoeopathy and acupuncture (I admit I only had two sessions of this and perhaps should have given it longer).  I would love to have given Mei's study a go, but found this forum too late.  I have not been to sleep clinics or anything of that nature, although am starting to think maybe I should try to get on one (I work for the NHS!)

I sometimes go for up to five days without sleep and wonder how I manage to stay upright, let alone work, drive and carry on living a normal life.  So many of your comments ring true with me too.  The less I sleep the more hyped up I feel.  I get panicky sometimes in the middle of the night, worried about not sleeping when I have work the next day.  I have had to drop to part time to cope with the lack of sleep [:-'(]

Sorry to bore you all, but it is just so good to let off steam at others who understand.  Those who have never experienced this just don't understand (my partner being one!) what they take for granted. 

I'll be taking a Zopiclone tonight as I have gone for three nights this week with no sleep and I desperately need some zzzzzzzzzzzzzz.  I refuse to take them on a regular basis.  Has anyone tried melatonin?  Does it help and how much can one take (I've tried talking to a pharmacist about the doseage, but because it's not licenced in the UK, she was not sure). 

May also try the acupuncture again.  Neil did it work for you?

Hope some of you at least get some zzzzzzzzzzzs tonight.xxxxxxxxxxxx

 

Hi Misty and welcome to the forum. I hope you find out about your problems soon! Definitely take a course to insist on a sleep study!It has not cured my problem but it has aided me in finding a bit more sleep in that the cpap machine has helped me to stay asleep longer once I can fall asleep. So now If I get to sleep I sleep longer.. which is great! I still have great difficulty getting to sleep. Once there it is better. Good luck to you!
 

Offline Carolyn

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« Reply #803 on: 24/10/2007 23:51:32 »
Hi Misty.  Welcome to TNS.

I'm not an insomniac, at least not on the same level and Neil and Karen.  I usually have about 7 - 10 days every 4 - 6 weeks where I only manage a few hours a night.  Generally about the 2nd or 3rd night I take Melatonin.  I take one 3 mg tablet.  If I take it for several days straight, my body builds up a tolerance to it, then I increase the dosage to 2 tablets.  I only take it as needed, so that it continues to remain effective.  It works for me and I don't wake up feeling groggy or moody.  Good luck Misty, hope you find a solution.
 

Offline Carolyn

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« Reply #804 on: 25/10/2007 07:56:39 »
*sigh*  3 am....can't sleep. 
 

Offline Misty

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« Reply #805 on: 25/10/2007 10:16:58 »
Hi Guys
Thanks for your welcome to TNS.

Thanks also for the tips re Melatonin.  I tried 6 mgm last night -  no joy.  Have recently read that homeopathic Coffea could help, so will give that a go as it is supposed to help with sleeplessness due to depression and emotions (had a lot of "life events" over the past five years, which has not helped the problem!).   If I can only get to sleep, then I can usually notch up a few hours zzzzzzz, but its nodding off that's the ongoing problem.

I really feel like a walking zombie and cannot concentrate at work, fortunately not much to do today.

Partner and I are going away on hols across some time zones at the end of next week and I am wondering if that might help, or make matters worse?!  I will report back.  When I have more time I want to quiz you all about what you've tried so far and about sleep studies etc.

Hope you are all managing to get some sleep in the  meantime.
 

Offline Luiza

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« Reply #806 on: 05/11/2007 16:34:20 »
Hello there,

My name is Luiza Sauma - I'm a journalist at The Independent on Sunday. I'm currently trying to put together a feature about insomnia, because it seems like almost everyone I know is suffering from the condition - myself included. I'm going to attempt to explore - through case studies, medical explanations and psychoanalysis - why so many people in the UK are finding it hard to get a good night's sleep.

I'm currently looking for insomniacs of all ages to speak to. There's a possiblity that someone will have to be photographed, but this hasn't been confirmed yet. But I can assure you that the piece will be very sensitive and sympathetic.

So, if you're interested, drop me a line at L.sauma@independent.co.uk. Might be helpful if you put something like "insomnia" in the subject line.

Thanks!
Luiza
 

Offline Karen W.

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« Reply #807 on: 05/11/2007 17:53:26 »
Hi Guys
Thanks for your welcome to TNS.

Thanks also for the tips re Melatonin.  I tried 6 mgm last night -  no joy.  Have recently read that homeopathic Coffea could help, so will give that a go as it is supposed to help with sleeplessness due to depression and emotions (had a lot of "life events" over the past five years, which has not helped the problem!).   If I can only get to sleep, then I can usually notch up a few hours zzzzzzz, but its nodding off that's the ongoing problem.

I really feel like a walking zombie and cannot concentrate at work, fortunately not much to do today.

Partner and I are going away on hols across some time zones at the end of next week and I am wondering if that might help, or make matters worse?!  I will report back.  When I have more time I want to quiz you all about what you've tried so far and about sleep studies etc.

Hope you are all managing to get some sleep in the  meantime.


Have fun on your trip and I hope the homeopathic coffee works. I have never heard of it!..LOL But thats not unusual for me. I have never heard of a lot of things!

I do know the zombie feeling and am very familiar with her shes my sister soul.. LOL LOL..

Have a fun trip relax...
 

Offline Karen W.

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« Reply #808 on: 05/11/2007 17:56:05 »
Hello there,

My name is Luiza Sauma - I'm a journalist at The Independent on Sunday. I'm currently trying to put together a feature about insomnia, because it seems like almost everyone I know is suffering from the condition - myself included. I'm going to attempt to explore - through case studies, medical explanations and psychoanalysis - why so many people in the UK are finding it hard to get a good night's sleep.

I'm currently looking for insomniacs of all ages to speak to. There's a possiblity that someone will have to be photographed, but this hasn't been confirmed yet. But I can assure you that the piece will be very sensitive and sympathetic.

So, if you're interested, drop me a line at L.sauma@independent.co.uk. Might be helpful if you put something like "insomnia" in the subject line.

Thanks!
Luiza



Welcome luzia, good luck with your article!
« Last Edit: 05/11/2007 18:00:47 by Karen W. »
 

Offline Janie Jane

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« Reply #809 on: 05/11/2007 20:00:11 »
Hi all,

Just found this site today.  I too am amazed at the number of us out there.  I always find 4 in the morning the loneliest place in the world ... if only there were drop-in insomni-cafs we could be having a giggle rather than freaking out at the prospect of the 0630 alarm and kids getting up (in whatever order they happen!).

I have suffered with insomnia on and  off for the last 10 years or so and can't remember the last time I slept through the night.  Getting off to sleep and staying there are both my enemies.  The thing that I don't get is how come you can have as little as 2 hours sleep a night for days on end and not have a big crash?  Does anyone else find this? 

My latest bout of insomnia has been going on for seven months now, where I've ranged anywhere from zero to five hours a night.  Friends of mine are horrified at the idea of having only five hours.  Personally I find it a god send.  Get past four hours and I cross 'the great divide' between coping and not coping.

Finally been to the doctors as I get up in the morning with no idea how I'm going to make it through the day.  Especially with kids and a house to look after.  He's suggested a seratonin link and given me some anti-anxiety / anti-depressants.  I've been taking them for the last six weeks and although I don't feel anxious any more, my sleep is still a total disaster.  I begged him for some sleeping pills and was given zopiclone.  This knocks me spark out but I'll still wake up a few times in the night, though I will get back off again OK and feel normal the next day.

Thing is, sleep is moreish and so are the pills.  I've done nytol, kalms, valerian etc to death and wondered if anyone could suggest what works for them.  Nytol makes me feel awful the next day and the herbal remedies that I've tried aren't that good.  I try not to take the sleepies too much as I don't want to get hooked but lately I've been reaching for them more and more.

I guess this long ramble is to get some fresh ideas so that I can come off them and onto something more natural.

Night night and sleep tight

Jane xx
 

Offline Karen W.

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« Reply #810 on: 05/11/2007 22:23:42 »
Hi Jane I Have been in your shoes for years! I have just gone through two sleep studies and been fitted with a CPAP machine. which helps me to get an hour or two more, that is if I can get off to sleep to begin with! It has helped but I still struggle. The pills I have avoided my whole life I used them but hated the way that they made me feel the next day! I hope you are able to get off them and try a more natural approach.. I know two hrs and sometimes lass a week is horrendous but I was usaully able to kick it up and move on through my day! It was and still is very hard to get the sleep and let me tell you.. it is worse now when I do get sleep because when I can't I am far less tolerant of it and cannot tolerate it as well as I did as it was the norm.. ..I don't know how to make it better! I just do the best I can and try to be happy anyway! Welcome to the forum! What part of our world are you from???
 

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« Reply #811 on: 06/11/2007 01:53:35 »
Hi everyone...hows everyone doing?...

thought id come and see whats happening on the forum....i agree with u jane would be great if there was some insomniac cafes to while away the night!...apart from the obvious tiredness etc the worse thing abt insomnia is the amount of time u have to kill to get thru the night and i personally think this is what makes life really hard for me!...u over think things etc..

wish there was a switch u could just turn off!

ive been thru all the usual solutions, doctors are useless in my experience....at the moment mums been telling me apparently calcium can help u sleep...not one ive heard before but i have been taking a calcium tab every night....cant say its really helped that much but i havent had an all nighter so thats something...

i think the best thing to do if u have been suffereing long term and dont have a solution then accept it .....enjoy the good days to the max and with the bad days just get thru them!!.....

nearly 2am in the morning and sleep hasnt yet come..

 

Offline Karen W.

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« Reply #812 on: 06/11/2007 02:19:10 »
Hi Zwitterion.. Glad to see you out there still plodding along. How is work been going?

I was taking coral calcium for a while and remember feeling pretty good, can't say as I remember why I stopped..LOL I think I was broke..LOL! I really did feel better taking it regularly but it has been a couple years ago!

I think you are right to accept it and do the best you can because fighting it seems to just make things worse!.. I try to be as pleasant as possible..glad to hear from you! hope you have been well.


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Offline Janie Jane

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« Reply #813 on: 06/11/2007 04:35:26 »
Hi, 0430 and still going strong.  Thanks for the messages, I'm in Southend.  Anyone around, meet me down the seafront in 10 mins!  Don't think sleep is coming tonight.  Kids up in 2 hrs.  Ho hum.
 

Offline kdlynn

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« Reply #814 on: 06/11/2007 04:49:44 »
i'm sorry to hear that. hope you get some sleep tomorrow!
 

Offline Janie Jane

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« Reply #815 on: 06/11/2007 10:14:04 »
Hey Karen,

What is a CPAP machine? 
 

Offline Karen W.

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« Reply #816 on: 06/11/2007 15:39:10 »
Hi Janie, Southend London (England I am presuming) eh?

CPAP Stands for, "CONTINUOUS POSITIVE AIRWAY PRESSURE." My CPAP machine is a CPCP/bilevel unit called the Respironics M-Series CPAP PRO. Mine is fitted with a Fisher & Paykel Flexfit 407 Mask! LOL...

It is a prescribed medical therapy  unit that needs to be applied in a certain manner during the course of your sleep to give you continuous Positive airway pressure  that will treat obstructive sleep apnea(OSA).  It relieves snoring excessive daytime sleeping, restless sleep, morning headaches, slight disorientation/memory lapsews, Irratability, personality changes, and pauses when the patient doesn't breath during their sleep!
It is used to help when you have a sleep disorder which occurs when the airway is obstructed or blocked, and no airflow moves into the lungs. (It is called ("apnea") It is or can be caused from a loss of muscle control over the tongue, which allows the tongue to fall back against the airway. It can also be from the collapse of the soft palate,( the roof of your mouth) over the airway.When you have an episode of sleep apnea your brain causes tou to wake up a bit without even knowing it in order to breathe. This can last from just a few seconds to over a minute at a time, and can happen hundreds of times throughout the night.Each breath should bring Oxygen into the lungs,to be absorbed into the blood and sent throughout the body to all of your organs and tissues. Your carbon dioxide should be exhaled., But what happens during apnea episodes is that the oxygen content of the blood decreases and carbon dioxide levels increase. This will cause your blood pressure to rise which puts additional stress on your heart and other organs.  The constant interruption of deep sleeping will result in a loss of restful, healthy sleep, and it normally causes daytime sleepiness.

my Bilevel machine treats Obstructive Sleep Apnea by providing low pressure air flow to your airways by means of a nasal mask that fits over your nose. Some have nasal pillows which can be inserted into the nostrils. Airpressure then holds the airway open and prevents the collapse of the soft palate and tongue over the airway passage. It allows you to breathe normally and get more uninterrupted sleep! Nasal CPAP opens the upper airway which is where my trouble is.
 My unit is fitted with a heated humidifier.

They are set up to use air flow from the room and they filter out dust and other airborne particles.

It basically blows a pretty healthy steady stream of air up your nose into your lungs to keep you breathing all night and to try to eliminate Apnea episodes.

I will tell you more later if I can.. Right now I am off to check into the hospital for some more tests.. Talk soon .. welcome once again!
 

Offline Janie Jane

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« Reply #817 on: 06/11/2007 15:41:25 »
God, that would be enough to keep you up at night.  Don't have a problem with sleep apnoea, thankfully!  Yes I am on the sunny East coast of England.  Good luck at the hospital.
 

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« Reply #818 on: 06/11/2007 15:51:28 »
I know where Southend is, but have not been there since I was a child (I live in Hertfordshire, and I know there are a few other forum members around London, but none that I know of in Essex).
 

Offline Karen W.

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« Reply #819 on: 08/11/2007 09:36:43 »
I CANNOT SLEEEEEEEEEEEEEEP tonight! AHHHHHHHH .. I am so not tired! I was in bed all day yesterday and bored stiff now I can't sleep. No yawns no droopy eyes no visions of sheeps to count no dreams no nodding no sandman do sleepies even anywhere hiding out! Thinking of taking a big big trip Turtle Island and never coming back!
 

Offline Karen W.

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« Reply #820 on: 08/11/2007 14:01:07 »
6:00AM still awake ..... running out of things to do.. and I am bored!
 

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« Reply #821 on: 10/11/2007 02:51:32 »
Hello there,

My name is Luiza Sauma - I'm a journalist at The Independent on Sunday. I'm currently trying to put together a feature about insomnia, because it seems like almost everyone I know is suffering from the condition - myself included. I'm going to attempt to explore - through case studies, medical explanations and psychoanalysis - why so many people in the UK are finding it hard to get a good night's sleep.

I'm currently looking for insomniacs of all ages to speak to. There's a possiblity that someone will have to be photographed, but this hasn't been confirmed yet. But I can assure you that the piece will be very sensitive and sympathetic.

So, if you're interested, drop me a line at L.sauma@independent.co.uk. Might be helpful if you put something like "insomnia" in the subject line.

Thanks!
Luiza


I responded.

Seems my 36 years of chronic Insomnia ( day in day out since I was six years old) does not qualify me !

The powers that be have determined that the article shall be related to people in their teens and twentys....the fact that I spent my ENTIRE teens and twenties suffering with Insomnia precludes me from being accepted.

This is a first for me.......I can not fathom why there needs to be an ageist twist !!
« Last Edit: 10/11/2007 03:04:42 by neilep »
 

Offline Karen W.

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« Reply #822 on: 10/11/2007 02:53:32 »
Thats very odd! Seems you would be a good resource of information....
 

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« Reply #823 on: 10/11/2007 03:03:58 »
Thats very odd! Seems you would be a good resource of information....

It actually pissed me off !!...

I never spoke with Luiza in person...just received an email...but I did try to call her.....just to see what the logic behind it was !!

..I really feel quite rejected by it !!...it's not as I wanted paying.......other interviews and documentary type things I have done have all been for the " cause "...so that others may benefit from it.........in this case !!....well......I won't be buying the Independent to read the article !!

To celebrate...I just took 15mg of Nitrazepam !!
 

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« Reply #824 on: 10/11/2007 03:15:49 »
Oh Neily...Please be careful... I am so in trouble right now... can't stay long...Please sleep well..
 

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« Reply #824 on: 10/11/2007 03:15:49 »

 

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