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New CH.com Forum › Cluster Headache Help and Support › Getting to Know Ya › Lifelong Sufferer becoming desperate

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Lifelong Sufferer becoming desperate (Read 1563 times)

DaddyQClusterhead

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Surrey UK
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Lifelong Sufferer becoming desperate
Oct 23^rd, 2015 at 6:47pm

Hi all, never done this message board/blogging before. I guess I'm desperately hoping to be taken seriously when i say 'headache'
I was recently taken to hospital after losing consciousness and collapsing mid cluster and i must admit the neurologist was surprisingly dismissive.
After CT ruling out anything more sinister (i know it feels like there isn't anything more so than the demon in full flow) we ran through all symptons which i have now researched exactly fit CH (i was originally diagnosed some 5 years but this got me doubting) i felt about an inch tall Sad

after going to hospital for a 'headache'. Like all of you I'm sure i have just got on as best i can with these damn things despite wanting to pull out my eye and teeth at times to relieve the damn pain but it has become so so draining. After about an 18month break the last 6 weeks have been absolute hell for my wife and children, colleagues and myself and i just can't physically deal with the pain anymore. I have recently tried sumatriptan nasal spray to no avail then the injections but had a really bad experience with that. I'm now being refered to neurology after pressure from me but need some advice to be taken a bit more seriously. I'm suffering sometimes up to 5 times a day for average 1-3 hours per CH and as you all know its just so debilitating. Sorry I've probably said everything you've heard a million times. Hope to talk to some of you soon. DQ

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AussieBrian CH.com Hall of Famer Offline CH - It's all in your head! Posts: 3851 Cairns, Qld, Australia Gender:	Re: Lifelong Sufferer becoming desperate Reply #1 - Oct 23^rd, 2015 at 8:21pm No need for apologies here, DaddyQ, as you're amongst friends now who truly understand. Welcome home.
Back to top	My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com IP Logged

Batch

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Control The Beast With
O2 & D3 You Must

Posts: 3706
Bremerton, WA
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Re: Lifelong Sufferer becoming desperate
Reply #2 - Oct 23^rd, 2015 at 10:20pm

Hey DQ,

I'll echo AussieBrian's welcome to CH.com. You've come to the right place.

Check your email inbox... I've sent you some info to get you started down the road to recovery... Lot's of very good info here at this site... Make sure your wife reads some of it...

Sing out when you have questions and please keep us posted.

V/R, Batch

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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Peter510

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Don't give out... But
don't give in.

Posts: 966
Wexford. Ireland
Gender: male

Re: Lifelong Sufferer becoming desperate
Reply #3 - Oct 24^th, 2015 at 2:11am

Hey DaddyQ,

Welcome to your new second family. Everyone here knows what you and your family have been going through, so no need to apologise for anything.

I don't know what age your family are, but I do know (now) that my wife and two girls went through hell worrying about me, until I got a handle on this thing and explained it to them. So make sure they are in the loop with every revelation you will undoubtedly get now that you have found us.

Read Batch's message carefully. It could just change your life, as his D3 regimen has done for lots of us.

We can tell you where to get all the ingredients at the best prices, if you decide to give it a try.

Have you tried wolfing down a Red Bull, or similar energy drink, at the onset of an attack? The sudden rush of caffeine and taurine can kill off an attack before it gets hold.

Also, have you looked at OUCH.CO.UK. There is some useful info in there.

You might want to read up about a device called gammaCore that has been on trial through the London Free Hospital for a couple of years now. I use it for severe moments ( although with Batch's D3 programme that seldom happens).

It is important that you get the right Neuro, one who specialises in Primary Headaches. It is also important that you have as many informed questions as you can for that Neuro when you meet them.

So, read, read and read. Ask lots of questions here. Don't despair, better times are coming.

Welcome again and mind yourself.

Peter.

You don't stop laughing because you grow old....You grow old because you stop laughing.

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Bob Johnson

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free." -Epictetus

Posts: 5965
Kennett Square, PA (USA)
Gender: male

Re: Lifelong Sufferer becoming desperate
Reply #4 - Oct 24^th, 2015 at 8:38am

Over the years we have read many messages from the UK about the poor quality of care around Cluster at the level of local docs. (It appears to reflect a lack of focus in medical education.)

Your health care syste allows you to by-pass local docs and move directly to a headache clinic for care.

You have an excellent support group. Work with them on how to make a move.

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

« Last Edit: Oct 24^th, 2015 at 9:01am by Bob Johnson »

Bob Johnson

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maz CH.com Hall of Famer Offline I Love CH.com! Posts: 1071 Hampshire, England Gender:	Re: Lifelong Sufferer becoming desperate Reply #5 - Nov 4^th, 2015 at 8:11pm Hi DaddyQ, and welcome I'm in the uk too - near Portsmouth. If you want to talk to someone "live" send me a PM and I'll give you my phone number. Maz
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