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(Message started by: cathy on Nov 22nd, 2006, 2:36pm)
Title: Brain Hospital
Post by cathy on Nov 22nd, 2006, 2:36pm
Just so you all know in case you didn't already tonight on BBC One at nine o clock UK time called Brain Hospital  and one of the patients featured is a clusterhead sufferer, don't know if you can get our channels but if you can then this is just a heads up!!!

Hope your all well.......

http://www.radiotimes.com

Hi Jonny  :-*
Title: Re: Brain Hospital
Post by Cathi04 on Nov 22nd, 2006, 3:23pm
CATHYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYY!!!!!

Come BAAACK!!!!!!!!!!!!!!!!!!
Nan and I were just talking about you yesterday!
Honey, we miss you terribly!!!!

Please???
Cathi :-*
Title: Re: Brain Hospital
Post by Opus on Nov 22nd, 2006, 3:34pm
Hey Cathy,

Great to see you post. Thanks for the heads up. I will look out for this and post a torrent link if I find one.

Paul
Title: Re: Brain Hospital
Post by goof1031 on Nov 22nd, 2006, 3:52pm
I would like to see  it. What is the time difference from eastern time?
Title: Re: Brain Hospital
Post by Linda_Howell on Nov 22nd, 2006, 3:58pm


 I sure wish I could get that program here but I was very happy to read  that they are using a WOMAN to depict the cluster headache sufferer.
Title: Re: Brain Hospital
Post by Charlie on Nov 22nd, 2006, 4:02pm
Might show up months or perhaps longer on BBC America.

Cool and good to hear from you. http://www.kolobok.wrg.ru/smiles/he_and_she/girl_smile.gif?SSImageQuality=Full

Charlie
Title: Re: Brain Hospital
Post by LeLimey on Nov 22nd, 2006, 4:04pm
I'm taping it so we'll see what we can do about getting copies etc if it's worth it! I'll tell you in an hour when its over!
Title: Re: Brain Hospital
Post by JeffB on Nov 22nd, 2006, 4:08pm
Brain Hospital...........?

I am glad they are not doing a show on rectal exams, hate to think what the name of that hospital is! ;;D
Title: Re: Brain Hospital
Post by Jonny on Nov 22nd, 2006, 4:11pm

on 11/22/06 at 14:36:27, cathy wrote:
Hi Jonny  :-*


Hi Honey  :-* :-*
Title: Re: Brain Hospital
Post by LeLimey on Nov 22nd, 2006, 4:13pm

on 11/22/06 at 16:08:08, JeffB wrote:
Brain Hospital...........?

I am glad they are not doing a show on rectal exams, hate to think what the name of that hospital is! ;;D


The JeffB(utt) Memorial ??
Title: Re: Brain Hospital
Post by JeffB on Nov 22nd, 2006, 4:16pm
;;D
Title: Re: Brain Hospital
Post by taraann on Nov 23rd, 2006, 7:37pm

on 11/22/06 at 16:04:50, LeLimey wrote:
I'm taping it so we'll see what we can do about getting copies etc if it's worth it! I'll tell you in an hour when its over!

Yah I'm interested let me know if it's any good!
Title: Re: Brain Hospital
Post by LeLimey on Nov 24th, 2006, 5:05am
Biggest load of bollocks I've ever seen in my life. There's an hour I won't get back  :-/
Title: Re: Brain Hospital
Post by mrs mac on Nov 24th, 2006, 5:20am
hmm a few of us think the same Helen!!!!

her attack seemed very minor (to say the least) interesting to see how the ONSI is performed though!!!


sandra xxxxx

added to say, i did find the guy with Parkinsons getting DBs interesting too!!!

and it did give CH a bit of a mention on National TV!!!!
Title: Re: Brain Hospital
Post by LeeS on Nov 24th, 2006, 7:01am
Programme transcript:

Quote:
Name: Barbara Cullen: UK Cluster Headache Sufferer for three years, up to eight attacks per day

LW = Laurence Watkins (Neurosurgeon)
BC  = Barbra Cullen  (Sufferer)
FC = Fred Cullen (Husband)

LW:  CH is not a headache that most people experience now and again. It is a very difficult type of headache pain to control and is described as a “Suicide Headache”, so severe patients cannot see any end to it. It will stop you in your tracks, even if you are crossing the road.  It is a severe pain, usually behind one eye, “Like a needle being stuck behind one eye” is usually how patients describe it.

FC:  To actually watch somebody like this, getting down on their knees, on the floor and literally holding their head and shaking, you think, god this is not a normal headache. I assumed initially this is something she is going to die from, a brain haemorrhage, this isn’t a normal headache; this is something that has gone wrong inside her head.

BC:  It’s excruciating, it’s there all the time it doesn’t go away, being in constant pain, being dragged down, it’s a vicious circle. I can’t sleep, so I’m constantly tired.  If I have to take the Morphine based pain killers, it’s easy to become disorientated and it would be quite easy to take a few extra and get rid of the pain for once.

FC:  Having spoken to the team in London, this is the treatment, and if this doesn’t work the future doesn’t bear thinking about. I think had we not heard of this operation, I don’t think she would have been here today, I think she would have taken here own life, by whatever means.

Narration:  The operation Barbara is to have is relatively new and not always successful.

[i]LW:  My impression is, it seems to work in 2 out of 3 people - they say ‘it has been worthwhile and significantly improves things’ - and 1 out of 3 say ‘well worth the try but didn’t do any good for me’.  A slight unknown with something that hasn’t been around for a long time, we are only really doing the operation in a group of people like yourself, who suffer chronic headache, who are troubled with it continuously, where nothing else has worked … last resort really …

Narration:  This morning Barbara will have her operation; Barbara’s headaches are caused by abnormal activity, deep within her brain.

LW:  The nervous system, one of the great unknown frontiers, the biggest challenge around.  This operation has been partially surgery and part electrical engineering. (The operation takes less than two hours)

Narrative:  It’s been two months since Barbara had her op; it’s been a success, the implant is working, it is stopping NEARLY all of her headaches.
Source: Em's video recorder

-Lee
Title: Re: Brain Hospital
Post by HeadhurtinMama on Nov 24th, 2006, 7:51am
I thought the name looked familiar...  Remember this article?  http://www.dailymail.co.uk/pages/live/articles/health/healthmain.html?in_article_id=412206&in_page_id=1774

Is she getting all of this publicity due to the surgery?  It would be nice if they didn't make sound like we were all going to off ourselves tomorrow...
Title: Re: Brain Hospital
Post by Barron on Nov 24th, 2006, 8:24am
All patients with cluster headaches jump at the chance of this operation. And it is wonderful to meet them later and discover their life is pain-free.


Personally... Psilocybin, & LSA has worked better for me.
What a pitty It's not recieving the same plugs over here in the UK as the ONSI...
Oh, & It's about 15 Grand cheaper... ::)

CArl... 8)
Title: Re: Brain Hospital
Post by Charlotte on Nov 24th, 2006, 9:26am
I remember the article, and wondering how this guy could possibly say we would all jump at the chance for this surgery and thinking that if she were episodic, she could easily be pf for two months and he would think it was a success.  I can't fault the guy for his enthusiasm but he has an extremely narrow point of view.

And I have a tremendous drive for survival, not the other way around.

Charlotte
Title: Re: Brain Hospital
Post by surfer on Nov 24th, 2006, 12:53pm
So you have had ONSI then Barron Maybe you should ask for your 15K back if it didnt work ;)
Title: Re: Brain Hospital
Post by Viking007 on Nov 24th, 2006, 2:13pm
Read more about it here:

[url][/url]
http://news.bbc.co.uk/1/hi/health/6170246.stm
Title: Re: Brain Hospital
Post by Viking007 on Nov 24th, 2006, 2:25pm

on 11/22/06 at 14:36:27, cathy wrote:
I dont know if you can get our channels


No they can't - They use the NTSC system (=Never twice the same color....
;) )
Title: Re: Brain Hospital
Post by Pinkfloyd on Nov 24th, 2006, 2:48pm

on 11/24/06 at 14:13:54, Viking007 wrote:
Read more about it here:

[url][/url]
http://news.bbc.co.uk/1/hi/health/6170246.stm


After looking at the pic on this link, maybe she would have been better off earlier if she'd asked Ben for some instructions on proper use of 02?

If Ben is listening.,,,,please contact me Ben. How about doing a short instructional video? We'll post it/host it on clusterbusters.com or link from you-tube...or sumptin.

Bobw
Title: Re: Brain Hospital
Post by HeadhurtinMama on Nov 24th, 2006, 4:36pm
I just have a hard time with the fact that in three years they went from no headaches to ONSI with no mention of any preventatives of any kind, only pain pills and O2.  Maybe that is why she was jumping at the chance for the ONSI?
Title: Re: Brain Hospital
Post by LeLimey on Nov 24th, 2006, 4:48pm
not once in the whole program did I hear of or see an imitrex injection - no triptans were mentioned. No preventatives were mentioned only opiates. I think the whole thing was a farce from beginning to end and a perfect example of TV showing only what they want to.. utter, utter crap. I'm outraged by it in fact. All I can think of is poor sods who's employers will now be pushing them to have this "wonder surgery" - it makes me want to heave.  >:(
Title: Re: Brain Hospital
Post by Yorky on Nov 24th, 2006, 5:40pm

on 11/24/06 at 16:48:30, LeLimey wrote:
not once in the whole program did I hear of or see an imitrex injection - no triptans were mentioned. No preventatives were mentioned only opiates. I think the whole thing was a farce from beginning to end and a perfect example of TV showing only what they want to.. utter, utter crap. I'm outraged by it in fact. All I can think of is poor sods who's employers will now be pushing them to have this "wonder surgery" - it makes me want to heave.  >:(
hi helen...i would not consider this type of surgery..(not if it make's you go surfing  ;;D)
Title: Re: Brain Hospital
Post by Charlotte on Nov 24th, 2006, 6:48pm
If she is episodic and is pf for 18 months or a few years, and then it comes back, what will she do?

c
Title: Re: Brain Hospital
Post by Barron on Nov 25th, 2006, 2:37am

on 11/24/06 at 12:53:21, surfer wrote:
So you have had ONSI then Barron Maybe you should ask for your 15K back if it didn't work ;)


Hello Surfer..Where in my post did I say I had, had the ONSI done?... You idiot. >:(...

If your gonna add some constructive comments to this topic, then please do me the Honor of allowing me to know who it is I am talking to, & sign off using your real name...

CArl... 8)
Title: Re: Brain Hospital
Post by surfer on Nov 25th, 2006, 4:24am
Idiot how nice of you. I assumed as you said that the alternatives worked better for you, then you had had ONSI I did not have a dig at you so I dont understand your problem.
I also didnt realise you had a new screen name CArl so why did you do that? What was wrong with your old one? so confusing [smiley=huh.gif]


My true name as it is so important to you is wait for it


William ;;D
Title: Re: Brain Hospital
Post by Barron on Nov 25th, 2006, 5:06am

on 11/25/06 at 04:24:54, surfer wrote:
Idiot how nice of you. I assumed as you said that the alternatives worked better for you, then you had had ONSI I did not have a dig at you so I dont understand your problem.
I also didnt realise you had a new screen name CArl so why did you do that? What was wrong with your old one? so confusing [smiley=huh.gif]


My true name as it is so important to you is wait for it


William ;;D


I see your a UK sufferer William...If you post on the UK board, then you would have known that I have not had the ONSI procedure done.
Do you post on the UK board? I don't seem to recall a William D ever posting.

New screen name William...Still the same old CArl though...Good yeah?... :P

Go on...What's your real name William...?

CArl... 8)
Title: Re: Brain Hospital
Post by surfer on Nov 25th, 2006, 5:18am
Before I get slated let me put down a few things about myself and my beliefs.


I am CCH and have been for many years, I have taken an awful lot of tablets some that have worked some that have not.

I have taken drugs for recreational purposes but dont any more.

I feel any body that gets relief from this Damn disease from what ever means they use, then Good luck and well done. Shit we all deserve to be free of pain.

Now let's get down to the nitty gritty and the reason you wind me up.

I have said by whatever means peple get a PF status then good luck and well done, I am fully supporting of that.

Now prescribed medication is legal although it comes with side effects and risks but you are monitored by your Dr and many tests have been done, your Dr wont prescribe the druge if you are not suitable for them.


OK now i await the slate. Illegal drugs also come with risks. Firstly they are illegal so you risk arrest and Prison,
you have to purchase them from somewhere weather it is a Pusher on the streets or a Drug barron either way the money is fed back into organised crime which includes supplying innocent young kids, theft, murder and the list could go on.

Now you only consider the illegal route because it worked for you good I am glad, yet you slate others and are aggresive towards any body that has a different view. You called me an idiot for no reason, I think maybe you are.


People have tried pulling their eyes out to rid themselves of pain they have commited suicide, they are so desperate, I also have considered this option on more than 1 occasion.


I hope this helps but I guess all I will get is a list of quotes and aggressive slates.

Then you wonder why I cant be arsed to post.

Good luck all with your PF status whatever your cure, and to those that have not found it yet please think carefully.  
Whatever route you take I hope it works for you ;)

I hope you all have a peacful Christmas and a PF one too.

Good bye from me

William / Surfer



Edited to say please excuse any mistakes in spelling or Grammer as my head is exploding.

CArl I think if you changed your methods and lost the aggression you would be suprised at the amount of support you would get.

I will not post here anymore but will keep an eye on progress
Title: Re: Brain Hospital
Post by Barron on Nov 25th, 2006, 5:24am

on 11/24/06 at 14:48:31, Pinkfloyd wrote:
If Ben is listening.,,,,please contact me Ben. How about doing a short instructional video? We'll post it/host it on clusterbusters.com or link from you-tube...or sumptin.

Bobw


Hello Bob,
I did suggest that Ben be invited along to OUCH(UK,s) next national conference , to talk about 02 use, & demonstrate Clustermasx..I also, along with another member also asked if an article could be published in Chit Chat...(A monthly magazine published by OUCH(UK) about the benifits of both owning, & using Clustermasx.
Both suggestions were rejected... How sad.

CArl... 8)
Title: Re: Brain Hospital
Post by LeLimey on Nov 25th, 2006, 5:25am
Right the bloody pair of you PACK IT IN!


Carl you've gone once and your first post back is to hijack in favour of alternatives. Pack it in.

Surfer, you've come over here once before to get at others and you're doing it again. If you can't add something useful constructive and supportive to this site them stop using it for your personal vendetta's and stay gone.


To everyone else, I'm sorry for my outburst I'm not allowing you lot to have to suffer this endless shite day in day out and i don't want to have to put up with it myself.

I'm damned if you're dragging all your shit over here.
Title: Re: Brain Hospital
Post by Barron on Nov 25th, 2006, 6:02am

on 11/25/06 at 05:25:28, LeLimey wrote:
Carl you've gone once and your first post back is to hijack in favor of alternatives. Pack it in.


Hello Helen, to hijack the post in favor of Alternatives was not my intension. IMHO Alternatives are proving to be more effective than the ONSI procedure. I do worry that sufferers are being given the wrong impression when it comes to the ONSI procedure. It's almost like sufferers are being treated like Lab Rats over here in the UK.
Not you personally Helen, but did you think banning me from OUCH(UK) would keep me quite. There is no new research taking place over our side of the water honey, & Prof Goadsby has said that he thinks there are better thing to test...What are those better things?...The ONSI.

This is an extremely misleading article by the very people who are suppose to have our best interests at heart.

CArl... 8)
Title: Re: Brain Hospital
Post by LeLimey on Nov 25th, 2006, 6:08am

on 11/25/06 at 06:02:21, Barron wrote:
did you think banning me from OUCH(UK) would keep me quite.



How very interesting.  ::)
Title: Re: Brain Hospital
Post by LeLimey on Nov 25th, 2006, 6:09am
Oh and Carl? Read the post that is pinned at the top of this board.
Title: Re: Brain Hospital
Post by Cathi04 on Nov 25th, 2006, 7:04am
Gentlemen,
(and my teeth are hurting, just using that term on you).
Cathy posted what she considered to be important information on this thread. Cathy posts quite rarely these days. I would think, when she DOES post, it is something she considers very important!
I never once in her post read anywhere that she was looking forward to having this thread hijacked in order to serve some alternative purpose.

Helen is right. Read this sticky at the top of this forum.

Cathi
Title: Re: Brain Hospital
Post by kcopelin on Nov 25th, 2006, 8:33am
Cathy, Thanks for giving us info and for posting, and Helen thanks for letting us know how the show was.  "Brain Hospital"? Yikes :o  Is this a weekly show?
Anyway, too bad they did such a crappy job with CH.  On the bright side, it did give our condition more coverage.  
What exactly is ONSI?  Is that the deep brain stimulation?  Not that I'm rushing to my doctor to request this....
In the UK do y'all have commercials on TV about prescription medications?  We do here..."Lunesta, finally get the sleep you deserve...ask your doctor for this drug...and find out about our FREE week long trial"
I would not be surprised to see add for surgeries as well.  
Sorry your thread got hi-jacked Cathy....trying to get it back on topic.

PFDAN y'all,
kathy (yep another Kathy)  
Title: Re: Brain Hospital
Post by LeLimey on Nov 25th, 2006, 9:19am
Kathy it would appear to be a weekly series documentary about the Institute of Neurology. There is one next wednesday on some new treatments for brain tumours. I won't watch it having seen for myself the slant they put on CH which was mentioned so badly that I feel personally it has actually done sufferers a disservice. They actually called the ONSI a "cure" which is unforgivable. ONSI is Occipital Nerve Stimulator Implant and basically wires are run up under your skull and connected to a battery pack under your chest which you can then up and down when getting hit or to prevent. It hasn't "cured" anyone. It sounds almost like an internal tens unit. You are awake for the procedure (except the battery pack under the skin bit!)
It was paraded as the new wonder treatment for CH and was misleading in an extreme. My personal feeling is any ch'ers who's bosses were watching this could now be pressured into going for having the op or losing their job. I think it was a disgraceful piece of television and if that is "promoting" CH then frnakly we're better off without!
Incidentally to the best of my knowledge the person in the programme is not and never has been a member of OUCH.
We only have adds for OTC meds on TV here. I don't think they are allowed to broadcast anything else to be honest.
The only adds for surgery we have are laser vision clinics and (I think) body enhancement such as implants but not specifically mentioned. This could only be on satellite TV though. I rarely watch much TV and I tend to do stuff during the adverts so I'm not the best person to answer that one!
Title: Re: Brain Hospital
Post by kcopelin on Nov 25th, 2006, 9:37am
Thanks Helen.  Sorry to hear the show was so messed up.  
kathy
Title: Re: Brain Hospital
Post by Barron on Nov 25th, 2006, 9:40am
Does anyone know who the Neurologist was who suggested to this lady that this was the best way forward to treat her Cluster headache's?

CArl... 8)
Title: Re: Brain Hospital
Post by LeLimey on Nov 25th, 2006, 9:54am

on 11/25/06 at 09:40:39, Barron wrote:
Does anyone know who the Neurologist was who suggested to this lady that this was the best way forward to treat her Cluster headache's?

CArl... 8)



on 11/25/06 at 09:19:33, LeLimey wrote:
Incidentally to the best of my knowledge the person in the programme is not and never has been a member of OUCH.
Title: Re: Brain Hospital
Post by Barron on Nov 25th, 2006, 10:11am
Thanks Helen, I wasn't  asking if the lady was a member of OUCH...

My question was/is...Who is the Neurologist who  recommended this procedure to this patient?

CArl.
Title: Re: Brain Hospital
Post by LeLimey on Nov 25th, 2006, 10:17am
And my answer was she isn't someone we know.
Title: Re: Brain Hospital
Post by Jonny on Nov 25th, 2006, 4:02pm

on 11/25/06 at 06:02:21, Barron wrote:
Not you personally Helen, but did you think banning me from OUCH(UK) would keep me quite.


Could it be that you were banned because you were talking to people over there like below?


on 11/25/06 at 02:37:56, Barron wrote:
Hello Surfer..Where in my post did I say I had, had the ONSI done?... You idiot. >:(...


If so, it WILL get you banned from here also!
Title: Re: Brain Hospital
Post by Viking007 on Nov 25th, 2006, 6:01pm
The Neuro Surgeon, Lawrence Watkins,  words were taken out of context. He didn't say on the programme that the operation was
a cure, and  the Daily Mail said that 2/3rd of the people who
had the operation  2/3rd were a success.  What he said was that 2/3rd who had the op said it was worthwhile.
I know of two sufferers who had the ONSI - they still have
attacks - but perhaps not as many as prior to the op. For them the op must have been "kind of worthwhile".


Journalists often mis-
quote, and in this case gave sufferers false hope.

Curt


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