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Topic: different attitutes (Read 387 times) |
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OLLY
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if anyone says "hayfever " i will scream
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different attitutes
« on: Jun 11th, 2004, 4:32am » |
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whats it like over there in the USA cause over here no ones heard of CH and its looked at as a bit of a bad headache or as i was told "its your hay fever "" ( im not on about doctors by the way).
My G.P has been good she,s prescribed me with what ever ive told her i just turn up with pages printed from this site  . Im not convinced anyone knows what the treatment for CH is apart from the sufferers.
wishing all sufferers pain free days
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Gator
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Re: different attitutes
« Reply #1 on: Jun 11th, 2004, 4:40am » |
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It seems to be about the same here. Most doctors and even some neurologists don't have a clue about CH. I hate the fact that it is even called a "headache" It's not an ache - it's a full blown, extremely severe, life wrecking pain. It needs to have a name more befitting the crippling pain it causes.
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Bob_Johnson
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Re: different attitutes
« Reply #2 on: Jun 11th, 2004, 8:30am » |
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If you read posts here for several years you would be convinced that US docs have the same blind spots--but this is a function of their medical education. Our job is to educate them in a tactful manner so that they can help us.
This is one reason I posted recommended books for you to get. We must be able to give our doc information from sources which they recognize and respect if we want to get their attention fully. Over the years my primary care doc has been willing to give me anything I have asked for to treat my clusters--because he has come to respect the material I give him in support of my request (yet his primary specialty is rheumatology).
Learning how to work within the system is the only way to get it to work for us.
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Bob Johnson
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don
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The worlds foremost Professor on the subject of CH lives in your backyard.
Prof. Peter Goadsby
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Lobster
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Re: different attitutes
« Reply #4 on: Jun 11th, 2004, 9:11am » |
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My GP is young and knew the whole chapter about CH, though I get the impression I am the first he has treated for it.
He takes it very seriously, and we are both enjoying the process... trying new meds once in a while... seeing if they kill me. 
Same boat as you Olly... he knows of the basic treatments, but this site is more up to date than most GP or Neuros. He tends to prescribe whatever I wish to try, within reason.
Wrokk
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Lizzie2
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Re: different attitutes
« Reply #5 on: Jun 11th, 2004, 10:30am » |
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on Jun 11th, 2004, 4:40am, Gator wrote:It seems to be about the same here. Most doctors and even some neurologists don't have a clue about CH. I hate the fact that it is even called a "headache" It's not an ache - it's a full blown, extremely severe, life wrecking pain. It needs to have a name more befitting the crippling pain it causes.
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I'm seriously starting to think that the only thing that should have the name "headache" is tension headache. Everything else needs a more unique name so that people stop saying, "Oh you have a headache? I had one yesterday. Advil made it better." I don't even try anymore...I just smile, nod, and walk away.
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notseinfeld
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Re: different attitutes
« Reply #6 on: Jun 11th, 2004, 4:36pm » |
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It's the attitude of gratitude, and that's no platitude.
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Tim_Z
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Re: different attitutes
« Reply #7 on: Jun 12th, 2004, 12:02am » |
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I'm with Gator on this one. Headache is way too tame.
Tim
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pubgirl
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Olly (Chris?)
Actually you are wrong and your post annoys me, and may well annoy others here who are not so lucky as you are. Education about CH and treatment for CH in the Uk may possibly be better than any other country in the world. A lot of this is down to the aforementioned Prof Goadsby and the UK CH Group (OUCh UK) www.ouch-uk.org- (giving you this but I know you've been given it before as well as the BNF link)
A taster of some things we have here which the guys in the USA don't have and would love to have:
All GP's in the UK have been sent a leaflet all about the condition, all GP's in the UK have access to details of EXACTLY the right treatment details via the BNF book which is in ALL their surgeries and they all refer to. GP's can then prescribe the right treatments at very low cost to us (people here often go without because they can't afford it!) You can also be referred to a neurologist free of charge. If that fails you can go to one of the centres of world excellence for CH treatment at The London Institute of Neurology (Prof Goadsby's team who know more about CH than almost anyone in the world) and you don't have to live in London to do this, anyone can go there.
You can ring up a Helpline number and talk to another sufferer of Ch and get advice or help or just talk, if you prefer you can talk on a message board instead. You can meet other sufferes via regular meetings in different areas of the country. You can borrow an 02 regulator for a minimal cost so you can use high flow rate 02 for a total cost of £11 including your prescription charge. We have been on National Radio several times, National newspapers several times, we will be in the Times shortly, next few weeks probably.
You can print off excellent information about the condition and its treatments that is UK based (more relevant and more likely to be listened to by arrogant UK GP's)
I could write more, but that gives you an idea that actually you are much luckier than many of the people who post here and suffer agony without relief due to the insurance system in the US. There are many good GP's here now, and if yours isn't one of them, time you moved to one who is.
And while you are at it, instead of whinging about how bad the UK is, DO SOMETHING ABOUT IT AND JOIN OUR ONGOING EFFORTS!
I'm done now
Wendy
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| « Last Edit: Jun 12th, 2004, 3:06am by pubgirl » |
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Superpain
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Re: different attitutes
« Reply #9 on: Jun 12th, 2004, 3:36am » |
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I would say our combined knowledge and resources in this community far surpass the knowledge or over 90% of all doctors.
Maybe if we just keep printing all this stuff out and taking it to our doc's, someday it won't be so hard to find one with his/her head out of his/her ass when it comes to CH.
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Chris
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OLLY
New Board Newbie
if anyone says "hayfever " i will scream
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Re: different attitutes
« Reply #10 on: Jun 12th, 2004, 5:50am » |
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Wendy im not whinging im trying to get advice to give to my GP so he can help me get rid of my head aches i thought the point of message boards was to air views
The thing i dont want to do is annoy anyone so im not going to bother in here no more will just let my GP give me any old tablet he thinks fit.
Perhaps if you ask your GP he can get you some tablets to stop you being so fickle
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SteveY
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Pain is a state of mind, my mind says it F** Hurts
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Re: different attitutes
« Reply #11 on: Jun 12th, 2004, 6:14am » |
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Wendy
Olly sufferes from CH.
He has had bad experiences with GP's in the UK.
The UK is no better or no worse than the US for ignorant doctors, in some cases the US is in front, i.e current research by Harvard medical school into the treatment of CH by halluceginic substances.
Thought I'd mention that as I am not allowed to at OUCH UK! So if it's good enough for Harvard it's good enough for me.
Wouldn't it be awful if people in the UK were denied access to current new research?
A possible cure is a possible cure, I don't care what it is, I'd try it.
So cut the crap about the UK is better educated in CH treatment, it aint.
Olly don;t you go any where, stay and post you're opinion, you can here.
ps Wendy is not fickle
ATB
Steve
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OLLY
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if anyone says "hayfever " i will scream
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Re: different attitutes
« Reply #12 on: Jun 12th, 2004, 7:09am » |
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Thanks mate
not really and ideal situation is it having message boards for people with "headaches". i take it theres no christmas party!!!
and before you say anything it annoys me when ch is called headaches.
WENDY
sorry if i annoy you but i speak my mind and would love any advice off you ive had clusters for 10 years 9 years of which i never suffered so im new to this
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pubgirl
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One thing I aint is fickle.
I express an opinion that is not affected by how popular it is likely to be, nor who it being said to. I don't play politics, I don't lick arses and I don't give fake sympathy, only real. What I DO do is give a lot of my time to helping CH sufferers, and it is not good if it looks on here to a new Uk visitor that no help is available to UK sufferers, because that just isn't true. There is loads of help available, and no other country, whatever Steve says, has as many options for help and support as people in the Uk do.
Steve
I know what your hobby horse is, and I sympathise with it.
Olly
I'm not suggesting you should stop posting, God forbid, it's just that you are complaining about a lack of resources and good quality help when you aren't using the help that is there. Your post made it look to any visitor here from the UK that there is no help to be had, and that just isn't true, so I HAD to put you right. I'm not knocking this forum by the way, I use both as there is value in both. But I do not know ANY individual who with the help of the people at OUCH has not succeeded in getting the support they need in the end, sometimes it takes time when you have one of the bad GPs, but there are many many clued up ones now. The exception to this is the people who have chronic CH resistant to treatment, the Uk is at the forefront even of treating those people, but sadly still sometimes no-one can truly help those.
Olly, don't cave in, get mad with me, then get mad enough to get the help you need, not accept second rate, you are entitled to the right treatment, go out there and make sure you get it. If you need advice and help to do so, you know where to come.
Wendy
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Filbert
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Re: different attitutes
« Reply #14 on: Jun 12th, 2004, 7:27am » |
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First of all Olly please don't go! There is always bound to be differences of opinion don't take it personally. I was described as "anal" a few months back but it's not the end of the world.
For what it's worth I agree partly with Wendy and partly with Steve. I think things have improved in the UK re. doctor ignorance partly thanks to the recent spate of good publicity [Casualty TV prog,Prof. Goadsby on BBC Radio4, all the GPs leafletted by OUCHUK, newspaper articles etc] Certainly the OUCHUK helpline has received far more calls in recent months than ever before.I do feel though there is still a hell of a long way to go and sadly many GPs still don't know what they are doing and even when they do still don't prescribe the right meds.
At least though Steve when we eventually get the right meds we don't have to worry about cost. Somebody got a script for 60 imi jabs last month cost- £6.and 80pence.What's that about 10 or11 dollars? I feel very sad when people post on here with worries about insurance and cost of meds.this condition is horrible enough without having to worry about money 
Anyway I think I've said enough! Olly DON'T GO!
Filbert
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pubgirl
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Olly
Check your messages
W
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tommyD
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Re: different attitutes
« Reply #16 on: Jun 12th, 2004, 10:13am » |
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Olly -
Something the UK has most of the Western World doesn't: legal psilocybin mushrooms, available in retail shops. This is the subject of the study of hallucinogenic substances SteveY was talking about. Indole-ring hallucinogens such as psilocybin and LSD are very effective treatrments for cluster, effective for an estimated 80 percent of those who've tried it.
But this treatment is not for everyone, and there is much to know first, so please don't just rush out and chew some 'shrooms. See www.clusterbusters.com and the shroom posts on the "medications" board here for more info.
OUCH-UK is a very active and effective group, but is concerned over legalities and doesn't discuss hallucinogen treatment. There is some conflict over this, as you can see. No need to get involved, check all the web sites for all the options. Good luck beating the beast.
-tommyD
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pubgirl
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Re: different attitutes
« Reply #17 on: Jun 12th, 2004, 11:20am » |
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tommy
Thanks for that, and for the link, and for not turning this into a soapbox or an attack, as this is not the place.
Wendy
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SteveY
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Pain is a state of mind, my mind says it F** Hurts
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Re: different attitutes
« Reply #19 on: Jun 13th, 2004, 8:49am » |
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Excellent piece of information Superpain.
Should be on the OUCH website.
Steve
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