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Cluster Headache Help and Support >> Getting to Know Ya >> Hello
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Message started by malthus on Aug 19th, 2008 at 11:54am

Title: Hello
Post by malthus on Aug 19th, 2008 at 11:54am
A big hello to all ;)  I am sure glad I found you lot, I thought I was alone :'( 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 :'(  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 8-)  I have just started to keep a scribbled list of events, (not as easy as it sounds ;D) and hopefully he will take me seriously.


Regards


Mick

Title: Re: Hello
Post by Bob_Johnson on Aug 19th, 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.


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Title: Re: Hello
Post by Guiseppi on Aug 19th, 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

Title: Re: Hello
Post by Chad on Aug 19th, 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.  

Title: Re: Hello
Post by malthus on Sep 1st, 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  ;D But they are getting shorter and less painful, (on my 4th week now) so fingers crossed they MIGHT rescind :-X  
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 ;D
Hope you're all OK 8-)


Mick

Title: Re: Hello
Post by pubgirl on Sep 1st, 2008 at 11:10am
Hi Mick

[smiley=wave.gif]

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

Title: Re: Hello
Post by malthus on Sep 1st, 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 ;D
Catch you over there!


Mick

Title: Re: Hello
Post by pubgirl on Sep 1st, 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

Title: Re: Hello
Post by ClusterChuck on Sep 1st, 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!!! ;) ;D

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)

Title: Re: Hello
Post by pubgirl on Sep 1st, 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

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