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Topic: Hello from the UK (Read 237 times) |
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Brummie
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Hello from the UK
« on: Aug 10th, 2004, 6:11pm » |
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Hello all,
Sorry this is long. I have as of Monday last week been diagnosed with Cluster Headaches by my Doctor.
I'm female 41 non smoker non drinker and have never suffered with headaches,migraines,allergies or anything really.  Perfectly healthy barring a few broken bones as a youngster. 
My symptoms are,
Headaches - vile horrible pain centred around my eye and temple, really bad and my eye waters/runs and sort of closes up a little as if I have been punched, my nose runs slightly enough to notice. The pain comes quickly preceeded by the runy nose. The pain is intense and I cannot sit still having to move around no good being in the dark either - as some friends have sugested, and NO way could I lie down.
Mostly they last about 50 minutes or so. They come at irregular times twice I have been woken from my sleep.
I had them before about Feb/March this year and they lasted for about 5 days. But did not go to the Doctor.
My question are they cluster headaches is my Doctor right? and how long will these go on for?
And my DOctor recoomended Asprin/Paracetamol but they do not touch the pain. He also prescribed a Migraine relief tablet to take when the pain starts but not seeming to work at least not so far. 
Please help
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thomas
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on Aug 10th, 2004, 6:11pm, Brummie wrote:
My question are they cluster headaches is my Doctor right? and how long will these go on for?
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They could be, and there is no predetermined time that they will last.  You should talk to your doctor about oxygen and triptans to abort the headaches. Then get on a preventive regimen. If you are being woken up at night, melatonin may help you also.
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IndianaJohn
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Re: Hello from the UK
« Reply #2 on: Aug 10th, 2004, 6:28pm » |
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Dear Brummie,
Welcome to the site, and so sorry that you are in pain.
It does indeed sound like cluster headaches. There is a cluster quiz among the links to left for you to check out. That said, your diagnosos sounds correct but what your doctor is presribing for treatment, quite frankly, is nuts!
As for your duration (cycle), it depends alot on the person and the meds. Verapamil with a prednisone taper is used by many of us to end the cycles. Many of us also use Imitrex (Imigram) injections or nasal sprays (my personal favorite - I hate needles) to abort ot end a headache. Tablets do not work nearly fast enough to end a HA. Also Oxygen is a cheap and effective treatment to end a HA (again see the links to the left).
From what you have written about your meds, I would consider finding a another doctor or good neurologist.
There is a wealth of information here. Please read the other message boards. There are also some very wonderful people here too. I have suffered with CH for 12 years and just recently found this site. In the month that I have been participating here I have learned so much.
Check out the inks and the message boards. Read, read, read. Sometimes the best offense against our condition is educating ourselves.
Best Wishes and Pain Free Days And Nights! (PFDAN)
John
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Did my brains fall out or is this headache over?
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don
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Quote:| And my DOctor recoomended Asprin/Paracetamol |
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The same Doc that made the diagnosis?
Find another Doc QUICK !
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pubgirl
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Hi Brummie
There certainly are some CH symptoms there, but to be sure you need to see a decent doctor or neurologist or educate the one you have as if the diagnosis is right, the treatment is all wrong!
There are quite a few things you can do to get the right treatment in the UK, the easiest way of talking you through these is for you either to post on the OUCH UK support board www.clusterheadaches.org.uk, or get the helpline number from that site and ring to talk to one of our volunteers (all volunteers are very knowledgeable and experienced CH sufferers who know what you are going through)
Hope to talk to you soon. There are many hundreds of us like you in the UK, and I'm sure we can help.
Wendy
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| « Last Edit: Aug 11th, 2004, 2:31am by pubgirl » |
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Brummie
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Re: Hello from the UK
« Reply #5 on: Aug 11th, 2004, 5:45pm » |
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Sorry this is long but you may well like it
Well last night I read the info as suggested and printed off what I needed, expecting it seems according to most to have to fight the GP etc.
When at 8.30am this morning Wed I got a phone call from my Doctors (just a run of the mill general practice of about 6 Doctors nothing fancy) and the receptionist asked how I was!!!!!! Yes you could have knocked me down with a feather too  When I said the tablets had had no effect to speak of before I could say anymore she said I had an appointment made for 9.15am if I could make it, to chat with the Doctor!!!!I went and guess what they had had a practice meeting and spoken about me!!! and decided after reading available data from the internet (they recommended your site too) and they got advice from a Nuroglogist at B'ham's QE hospital on current treatments for CH that they apologised and said they were now be prescribing Imigran injections. And I have been given 3 Doctors mobile numbers in case I have an "attack" and need emergency treatment!!! I have an appointment to see them again Friday.
They are going to see how the injestion works for me first then if that okay the oxygen next.
Well just like to say my GP's have come up trumps in a very very short space of time. And apparently I am their only CH sufferer. But a happy one ;D
And yes the injections do work (well for me anyhow)
Karen
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pubgirl
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Karen
What absolutely bloody fantastic news!
The 02 is good to have as well as the Imigran. Give me a shout when you want the gen' on 02 over here
Good on you and on them, we're getting somewhere!
Wendy
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Brummie
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Re: Hello from the UK
« Reply #7 on: Aug 11th, 2004, 6:02pm » |
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Thanks Wendy  I have posted on the OUCH UK board too and will join when I get a free minute more than willingly to listen to any advice to be offered. By you or anyone 
I am told by the Doctor that the NH don't supply the right type of mask thingy I need and I will have to buy them, but it seems a small price to pay
In fact I think my GP's are more into this than me
Karen
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pubgirl
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Have posted the 02 information for you 'over there'. You can manage with the crappy NHS mask in the short term if you modify it as I suggest, but the OUCH UK ones (2 for £5) are much much better and you can use a lot less 02 when you use them.
Still smiling for you here!
Wendy
P.S. On a personal level, I really would give the 02 a go. If it works for you (it does for 80% of us) it is THE BEST!
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| « Last Edit: Aug 11th, 2004, 6:10pm by pubgirl » |
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Filbert
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Re: Hello from the UK
« Reply #9 on: Aug 11th, 2004, 6:31pm » |
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Who said miracles were a thing of the past!! Very pleased for you!!!
Filbert
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Brummie
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Re: Hello from the UK
« Reply #10 on: Aug 11th, 2004, 6:46pm » |
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I am not being dense here but is it really that odd to be called a "miracle" that a Doctor diagnoses then prescribes what you need.?
Obviously if it is I am luckier than I realise
Karen
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pubgirl
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Bloody good point!
Sad statement about doctors really
W
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Filbert
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Re: Hello from the UK
« Reply #12 on: Aug 11th, 2004, 7:07pm » |
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on Aug 11th, 2004, 6:46pm, Brummie wrote:I am not being dense here but is it really that odd to be called a "miracle" that a Doctor diagnoses then prescribes what you need.?
Obviously if it is I am luckier than I realise
Karen |
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Yes sadly Karen it has taken many of us years to be diagnosed properly [about 20 in my case] and even then it can be very difficult to get Imigran/trex injections and oxygen prescribed. It is slowly getting better but it still leaves a lot to be desired 
Filbert
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Fatcat
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Re: Hello from the UK
« Reply #13 on: Aug 12th, 2004, 4:34am » |
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Hi Karen,
It took me 8 years before I finally learned about CH and got to see a neuro who confirmed the diagnosis.
Welcome to the board - sorry you have to be here, but glat to hear you're making progress.
Fatcat
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synergy2120
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Re: Hello from the UK
« Reply #14 on: Aug 12th, 2004, 4:55am » |
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Sorry about the CH brummie - but CONGRATULATIONS on the GP side of things!
Im from the UK and our GP is not to good with CH - Whereabouts is your GP? Can i have his address? Can i have his phone number? Maybe it might be worth your doctor talking to my doctor?
Sorry im getting carried away but its not everyday this happens! Hopefully it will happen more and more for other sufferers - gos wouldnlt that be great!
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Ronny
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Re: Hello from the UK
« Reply #15 on: Aug 12th, 2004, 1:55pm » |
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on Aug 11th, 2004, 5:45pm, Brummie wrote:
When at 8.30am this morning Wed I got a phone call from my Doctors (just a run of the mill general practice of about 6 Doctors nothing fancy) and the receptionist asked how I was!!!!!! Yes you could have knocked me down with a feather too When I said the tablets had had no effect to speak of before I could say anymore she said I had an appointment made for 9.15am if I could make it, to chat with the Doctor!!!!I went and guess what they had had a practice meeting and spoken about me!!! and decided after reading available data from the internet (they recommended your site too) and they got advice from a Nuroglogist at B'ham's QE hospital on current treatments for CH that they apologised and said they were now be prescribing Imigran injections. And I have been given 3 Doctors mobile numbers in case I have an "attack" and need emergency treatment!!! I have an appointment to see them again Friday. |
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Absolutely amazing!
My congratulations to those docs! 
I wish they were all like that.
Anyway, glad to see you here, not that i enjoy you're in pain, but glad you've found this place.
I have learned a lot here in a very short time. Very nice people (most of them  )
Wishing you many PFDANs
Ronny.
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