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marie1982

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Feb 20^th, 2011 at 4:49pm

Hi to everyone,

At last somewhere I can come and speak with other sufferers. I dont know of anyone else around where I live in the north east of england that I can speak to that can understand the pain I go through.
This all started about five years ago when I was 24 years old, I was woken up during the night with a stabbing pain in my right eye and right side of my face. The pain was immense and this went on for about three hours. I eventually got back to sleep however when I woke up a couple of hours later the right side of my face was all swollen up and I could barely open my eye. I went to my doctors who advised me I had a STYE ....of all things....I went home with some eye ointment....the swelling and pain continued that night and the next day my grandparents came over to see me and were horrified at the state I was in unable to bear the pain....they took me straight to the hospital and I ended up being admitted for a week hooked up to a drip and having a number of tests.....At the end of the week I was sent home on Gabepentin and reffered to a neurologist who diagnosed Trigeminal Neuralgia.....I have suffered a number of relapses including another weeks stay in hospital last year.....Two days ago I was again taken to A&E as the pain was so bad I was banging my head off the sitting room wall to try and take the pain away....the on call doctor put a call in to the neurology department who advised its not Trigeminal Neuralgia that infact it was cluster headaches and had been mis-diagnosed again....I now have to go back to my GP tommorow and ask for another referral to the neurologist.
I am starting to get frustrated now that 5 years have passed and still I do not have a solid diagnosis....the hospital yesterday sent me home with indomethicin which seems to have had little effect.
Sorry about the long winded introduction thought it would be easier to get everything in one go

Marie x

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bejeeber

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Reply #1 - Feb 20^th, 2011 at 5:00pm

Doctors. They SUCK. Idiots.

That's my take on 'em anyway. Cheesy

If you could demand that you be referred to a headache specialist, that could put an end to the diagnosis merry go round because diagnosing is one thing they (and only they) are good at. A run of the mill neurologist likely won't know jack about CH. Don't accept or trust a non headache specialist neurologist.

And if your last diagnosis of CH is correct, well please keep hanging around here, because many of the message board veterans have found significant relief and are anxious to share how it's done with you. Grin

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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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marie1982 CH.com Newbie Offline I Love CH.com! Posts: 3 Northumberland United Kingdom Gender:	Re: New Member :) Reply #2 - Feb 20^th, 2011 at 5:05pm Thank for the advice bejeeber. Unfortuantley we do not seem to have much choice here who we are reffered to and with my normal gp practice having very little understanding of my symptoms (he was on google at my last appointment trying to find out info) it seems to take a while to get to see anyone
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Batch

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Re: New Member :)
Reply #3 - Feb 20^th, 2011 at 6:49pm

Marie,

Just because your National Health Service may be screwed up as Hogan's Goat, it doesn't mean you can't come to an appointment armed with more facts about your disorder than the physician you see. It also helps to know ahead of time how patients suffering from this disorder should be properly treated according to the experts.

Read the following link and print a copy to take along to your next appointment. It is one of the best guidelines and standards of care in treating our disorder.

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or

Here you'll find the EFNS guidelines on the treatment of cluster headache and other trigeminal-autonomic cephalalgias. The neurologists on the European Federation of Neurological Societies (EFNS) task force who generated these recommendations number among the brightest minds in the field of neurology and all have many years in a clinical environment treating patients who suffer from this terribly painful disorder.

If the meds your physician prescribes are not on the EFNS list, ask how many cluster headache sufferers he's treated successfully and don't be afraid to challenge the him with questions why he's not prescribing in accordance with the accepted standards of care for cluster headache... After all, he feels no pain if he prescribes medications that are ineffective for CH...

In the absence of another underlying or co-morbid condition, the mainstream starting point and three-pronged strategy for treating CH usually includes a prescription for a 10 day to two-week prednisone taper. Prednisone is a very effective preventative, but is only prescribed for short periods as it has some onerous side effects if taken too long.

There should be a second preventative prescribed along with the prednisone taper such as verapamil. It can take a week to ten days for verapamil to build up to therapeutic levels and it is usually started at a low dose with increases in dosage until it becomes effective.

Finally there should be a prescription for oxygen therapy at a flow rate of 12 to 15 liters/minute as an acute treatment to stop the terrible pain. Oxygen therapy is very safe, very effective and it's the least costly abortive abortive available to us. Many neurologists will also prescribe a "Bail-out" or escape abortive from the triptan family to be taken if the oxygen therapy is unable to stop the pain.

You might want to give the folks at OUCH-UK a call on their Helpline. They know how to swindle oxygen therapy out of your National Health Service faster than most. Their website is at:

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

and their Helpline is 0 1646 651 979. Call them asap.

Take care and cheers... Things will get better.

V/R, Batch

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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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Batty

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Re: New Member :)
Reply #4 - Feb 20^th, 2011 at 7:11pm

marie1982 wrote on Feb 20^th, 2011 at 5:05pm:

(he was on google at my last appointment trying to find out info)

Hi marie1982
Believe me girl, you are on a Winner there with your Dr!

If you think the NHS is bad, read on here!

1st Welcome here, WE are all Partners in Pain and you have just joined our sorry clan but....
2nd HERE, you will find all the info and support and encouragement..

You are not alone with this anymore!

Respect

Gary (Cheshire)

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"An old Wolf may lose his teeth, but never his nature.."

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Batty CH.com Veteran Offline I thought it was CH...but my helmet is too tight! Posts: 210 E'Port Cheshire UK Gender:	Re: New Member :) Reply #5 - Feb 20^th, 2011 at 7:22pm WHAT the F**K is going on here? Why are newbies putting up with shit like this in the 21st Century, for 5 years!.... Didn't mean to shout,rant over, will get my coat etc...
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bejeeber

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Re: New Member :)
Reply #6 - Feb 20^th, 2011 at 7:41pm

I've heard others on here say that OUCH UK can help navigate the NHS for CH care.

Here's a quote from an older post that is along the same lines that I've seen others report:

"It's your right under NHS guidelines to see a specialist in the area of your complaint ie Headache!

There is no limit on where you can travel to so you could ask to be seen at GOSH or even the ION if you need to move out of area for treatment. (Not keeping writing out full names!!)."

You're not alone with health care system navigation challenges in the UK. So many of us here in the US have no health insurance - it can be entirely unaffordable if you have pre-existing conditions and your employer doesn't provide it. Plus it's standard practice for a headache specialist here to make a CH patient in crisis wait several months for an appointment. (Doctors. They SUCK. Shocked

)

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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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Batty CH.com Veteran Offline I thought it was CH...but my helmet is too tight! Posts: 210 E'Port Cheshire UK Gender:	Re: New Member :) Reply #7 - Feb 20^th, 2011 at 7:46pm Doctors Grrrrrrrrrr!
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Guiseppi

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Re: New Member :)
Reply #8 - Feb 20^th, 2011 at 10:16pm

Batch has given you some golden info, follow it!

For now, Get some energy drinks, Rock Star, Monster, any containing the combo of caffiene and taurine. Chugged at the first sign of a hit many can abort or really reduce an attack.

33 years of CH and nothing compares to the speed, cost, and ease of oxygen for me. I feel an attack coming on, I huff pure 02, 6-8 minutes later, I'm pain free. It's good stuff.

Welcome to the board, we don't want you to hurt anymore! Wink

Joe

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"Somebody had to say it" is usually a piss poor excuse to be mean.

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marie1982

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Reply #9 - Feb 21^st, 2011 at 10:36am

Thanks for all the advice people ..had a telephone conversation with my doctor this morning and she has again reffered me to the neurologist ...hopefully I wont be waiting months for an appointment again.

Batty in regards to why do we put up with it for 5 years we seem to put a lot of trust in our nhs system and the doctors treating us unfortunatley this has resulted in a lot of pain and suffering that could of been avoided.

Marie.

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Batty

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I thought it was CH...but
my helmet is too tight!

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Reply #10 - Feb 22^nd, 2011 at 6:40am

Hi Marie,
We historically 'looked up' to our Docs as 'learned'!.... With more, easily available info
unfortunately now we realise their falibility.....

But if you stick around, you will see that in the US, when things go wrong...maybe we should'nt moan at all!

In 'Broken Britain' it would probably cost £millions to educate our Doctors/GP about just about CH!
Sadly, in reality, its never going to happen.... Education

Keep your chin up girl!

Respect

Gary

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« Last Edit: Feb 23^rd, 2011 at 10:03am by Batty »

"An old Wolf may lose his teeth, but never his nature.."

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Andy T

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Re: New Member :)
Reply #11 - Feb 23^rd, 2011 at 8:08am

Hi Marie

Hope you hear summat soon re a Neuro appointment. I have to agree with Batty, we do, here in the UK, seem to place far too much faith in our doc's. the more I read on sites like this, the more I realise how little is known about CH, by our NHS (or maybe they'd rather pretend to not know).

Like you, I took too long to first get diagnosed, n I started, heading up 13 years ago now. After 3 years, I got diagnosed and some reasonable treatments saw me through a good few years, at least able to deal with the episodes, knowing I could minimise the impact to my life.

My last episode was the worst of my CH carear. In an odd way, the following might make you feel better. After all these years, when this last session went off the scale, I still couldn't get anyone in our NHS to pull their finger out. So it ain't just you. Sounds to me like you're doing all you can, and getting the same short shrift as most of us, here in the UK.

My best advice, keep at em. Don't wait for the Neuro to contact you, phone your GP at regular intervals and ask if they can chase up the referal. When I did that, I did at least get an appointment through. Even if it was for five weeks later!! Lol

Finally, do listen to the advice of all the reprobates on here. They do understand, they do care and they do know their stuff.

All the very best

Andrew

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