New CH.com Forum

malthus

CH.com Newbie

Offline

I Love CH.com!

Posts: 3
Scotland, UK
Gender: male

Hello
Aug 19^th, 2008 at 11:54am

A big hello to all Wink

I am sure glad I found you lot, I thought I was alone Cry

I've been having CH's for over 20 years (back then it was diagnosed as migraine), but I knew there was more to it! I know self diagnosis is frowned upon, but I tick ALL the boxes and feel ALL the pain Cry

It was my wife that told me about CH, (she works in a hospital) I hadn't heard of it until recently, but she said I have the symptoms down to a tee. Upon reading more about it, she was right.
I am just going through a bout of torture, I had 3 last night and feel like I could have one at any minute, are these called shadows? It must be 12 months since my last attack, just when you think it's all over...... Just tried the exercise recommended by the Spaniard, and it seemed to ease things. I normally squeeze my head/temple, push the palm of my hand in my eye, bang my head and anything else that doesn't work, anything to get through the pain

My next visit to the Doctors will be interesting, as I will be asking for a diagnosis from a Neurologist Cool

I have just started to keep a scribbled list of events, (not as easy as it sounds Grin

) and hopefully he will take me seriously.

Regards

Mick

Back to top

IP Logged

Click Here to visit the CH.com Facebook page!

Bob Johnson CH.com Alumnus Offline "Only the educated are free." -Epictetus Posts: 5965 Kennett Square, PA (USA) Gender:	Re: Hello Reply #1 - Aug 19^th, 2008 at 12:51pm We have had too much experience with neurologists who know less than we do! Suggest you get in touch with the UK OUCH group and seek their advice on docs who understand the complexities of Cluster. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or
Back to top	Bob Johnson IP Logged

Guiseppi

CH.com Moderator
CH.com Alumnus

Offline

San Diego to Florida 05-16-2011

Posts: 12063
SAN DIEGO, CALIFORNIA USA
Gender: male

Re: Hello
Reply #2 - Aug 19^th, 2008 at 12:57pm

Welcome to the board, glad you found us. Now you have to start educating the heck out of yourself so you can assist the doctors in plannng your treatment. Get on the OUCH UK site, find out what neuros know CH. Then push for oxygen!

Breathing pure oxygen, at a high flow rate, using a non re breather mask, started at the first hint of an attack. I can completely abort an attack in as little as 6 minutes! You'll hear this a lot on the board, it's proven a miracle abort for many of us, should be one of your first line abortives!

Glad you found us, hope we can help you!

Guiseppi

Back to top

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

IP Logged

Chad

CH.com Hall of Famer

Offline

Posts: 738
Emmaus, PA
Gender: male

Re: Hello
Reply #3 - Aug 19^th, 2008 at 1:34pm

Keep on trying that "pumping" exercise that the Spaniard spoke about. Do it over and over again till the pain subsides. Your arms might get tired, but it's worth it. Never press on the temple or put your head in your lap and don't scream. These things only make the pain worse. I have yet to do so, but get the O2. I'm in remission right now, but i'm absorbing as much info as possible on this site so i'm well prepared for the next cycle.

Back to top

When the PAIN starts, I FIGHT back!

Rivea Corymbosa seeds were my KO punch, now D3 is the front runner!

IP Logged

malthus

CH.com Newbie

Offline

I Love CH.com!

Posts: 3
Scotland, UK
Gender: male

Re: Hello
Reply #4 - Sep 1^st, 2008 at 8:33am

Bit of a update. Been to my doctor this morning, and he has heard of CH's and agrees with my self diagnosis:) Next step is the neurologist, I will have to wait (maybe a few weeks) for a appointment, but the ball is rolling

Meanwhile I continue to have pain, mainly in the night with the odd day treat Grin

But they are getting shorter and less painful, (on my 4th week now) so fingers crossed they MIGHT rescind Lips Sealed

I told him (Dr) about Red Bull (which does help) and he did warn me against using to much of it, due to the fact that I am 50, smoke and could be a candidate for a heart attack! Ho hum Grin

Hope you're all OK Cool

Mick

Back to top

IP Logged

pubgirl

CH.com Hall of Famer

Offline

The next person who calls
it a migraine eats teeth

Posts: 693
x0|London|United_Kingdom||0|0|
Gender: female

Re: Hello
Reply #5 - Sep 1^st, 2008 at 11:10am

Hi Mick

Sounds like you are already doing well but the GP doesn't need to wait for you to see a neuro to give you the right treatments if he/she is reasonably sure of the diagnosis. In fact they should ALREADY have prescribed an effective abortive for you - preferably 02 and a fast delivery triptan (not a pill) Get them to look on the specific Cluster Headache page in their BNF and it will tell them clearly what to give you. We fought long and hard to get that entry included in the GP's prescribing Bible, so make sure they look at it!!!

It is a good idea to join OUCH UK as well as here as there are lots of specific things about the way the NHS do things you will need to know about which don't occur in the USA e.g. Home Oxygen delivery services (free here, not even a prescription charge to pay!!!!)
Also some of the drugs have different names.

I wouldn't abandon ch.com though- the two sites are VERY different and both have their own unique value to sufferers

Wendy the Brit

Back to top

« Last Edit: Sep 1^st, 2008 at 11:13am by pubgirl »

Calling all Brits (and anyone else- all welcome) Join OUCH UK and help us fight CH together

IP Logged

malthus CH.com Newbie Offline I Love CH.com! Posts: 3 Scotland, UK Gender:	Re: Hello Reply #6 - Sep 1^st, 2008 at 11:42am Thanks Wendy, I've just prised my wallet open and joined 'ouch uk' I am waiting for a email to confirm activation Catch you over there! Mick
Back to top	IP Logged

pubgirl CH.com Hall of Famer Offline The next person who calls it a migraine eats teeth Posts: 693 x0\|London\|United_Kingdom\|\|0\|0\| Gender:	Re: Hello Reply #7 - Sep 1^st, 2008 at 11:45am See you there Mick! You can still read all the info on the site while you wait for your log-in to the Message Board btw I am "The Wend" on OUCH UK, not pubgirl W
Back to top	« Last Edit: Sep 1^st, 2008 at 11:46am by pubgirl » Calling all Brits (and anyone else- all welcome) Join OUCH UK and help us fight CH together IP Logged

ClusterChuck

CH.com Alumnus

Offline

The BEAST rises again,
and again, and again,
and .

Posts: 5394
Greenville, North Carolina
Gender: male

Re: Hello
Reply #8 - Sep 1^st, 2008 at 1:22pm

Yes, don't abandon this web site .. .. those damnable Brits are a bit strange .. It must be because they are on the wrong side of the big pond .. Oh, wait, you are on that side too ... Ummmm Nevermind!!! Wink

LOL, Welcome aboard, matey! Glad we can be of help to you! As much as I tease, the OUCH UK group has a LOT of good information and help available to you.

Just watch out for ~~the witch~~ Helen ... I am not sure what she calls herself on the OUCH UK site, but she is LeLimey on this site. She is a slippery devil!!

I won't even START on Wendy!!!

DAMN WIMMINZ!!! LOL

Seriously, though, BOTH are great contacts to have and KNOW their stuff! (Surprising for mere females!)

Chuck

(Who is going into hiding now)

Back to top

CAUTION: Do NOT smoke when using or around oxygen. Oxygen can permeate your clothing or bedding. Wait, before lighting cigarette or flame.

Keep fire extinguisher available, and charged.

IP Logged

Click Here to visit the CH.com Facebook page!

pubgirl CH.com Hall of Famer Offline The next person who calls it a migraine eats teeth Posts: 693 x0\|London\|United_Kingdom\|\|0\|0\| Gender:	Re: Hello Reply #9 - Sep 1^st, 2008 at 4:40pm Watch it Chuck I may not be near enough to clonk you one, but I know a man who is!!!! W
Back to top	Calling all Brits (and anyone else- all welcome) Join OUCH UK and help us fight CH together IP Logged

	Welcome, Guest. Please Login or Register
	Search box updated Dec 3, 2011... Search ch.com with Google!