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Topic: Back after a few years (Read 339 times) |
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NLancaster
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Hi Folks,
Once more I find myself back at this website due to the return of the uninvited guest in my head.
This is a bit of a rant at no one in particular because I’ve reached almost the end of the line with this CH trip.
I’ve had CH since I was about 12 or 13. although it wasn’t diagnosed until my late teens.
I’ve had to deal with dozens of doctors and other medical professionals over the years who didn’t understand CH or felt the need to patronize me over the severity of pain.
Don’t you just wish someone would invent something so you could temporarily transfer the throbbing, burning, stabbing pain to an uncompassionate non-sufferer? Just for five seconds, just long enough so they can see the world of pain they know nothing about.
Like the well meaning ‘Oh, yes, I’ve had a migraine’ types, or the ‘have you tried rubbing seaweed on your head while chanting the words to Born to Run backwards’ types.
It almost makes me smile now when people tell me how this hurts or that hurts. I know of no pain in my life more severe than the pain I feel during a CH cycle - five, six, eight, ten times a DAY.
Right now my headaches are about ninety minutes apart. They seem to be slowing down though, I think it might be closer to two hours now.
Tomorrow I see another neurologist and hopefully walk out of his or her office a happy man.
Nick
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BobG
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Re: Back after a few years
« Reply #1 on: May 2nd, 2005, 11:12am » |
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Sorry to hear you're hurting. What kind of meds have you tried? Verapamil? Topomax? Imitrex? Have you tried O2? Melatonin to get through the night? There are threads here about Kuduz. How about schrooms?
Please let us know.
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Stay stressed. Never relax. Never sleep. Ever.
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SusieWong
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I love YaBB 1G - SP1!
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Re: Back after a few years
« Reply #2 on: May 2nd, 2005, 3:55pm » |
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Hi Nick, 
I'm really sorry that you're being so badly hit. You sound to be really going through it right now. 
Have you looked at the OUCH(UK) site? There's loads of useful information to read there and a helpline. It sounds as though you need to get to a neurologist who knows about CH.
www.clusterheadaches.org.uk
My husband suffered like you for years until he contacted them, with their help he now has effective medications which has saved us both of our sanity.
Thinking about you and hoping things ease up very soon.
Suex
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Tomorrow is another day.
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Averiz
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Any day now!
  
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Re: Back after a few years
« Reply #3 on: May 2nd, 2005, 5:23pm » |
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Hey Nick --Sorry to hear it -- I think I am finally winding down after a 7 week run. I was having 6 or 7 a day. Hang in there. I feel yout pain.
Mike
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NLancaster
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Re: Back after a few years
« Reply #4 on: May 3rd, 2005, 5:23pm » |
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Hi Folks,
Despite the UK flag icon I'm actually living in the US now, moved here a couple of years ago.
As for meds - Imitrex injections is my main treatment. I just saw a new neurologist today and she prescribed prednisone which I've used in the past twice, one time it worked, the other not.
I've also got a script for O2 but it's proving difficult to get on the insurance, working on it.
This site, the OUCH site and the folks on both are life savers.
Nick
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TxBasslady
CH.com Alumnus
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Bass fishin' is a h00t It's the catchin' that sux
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Re: Back after a few years
« Reply #5 on: May 4th, 2005, 12:19am » |
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Welcome, Nick
Sorry the CH is back.
The 02 is not expensive...nothing like the expense of the trex.
Hope things get better for ya real quick.
We're a nice bunch...stick around! 
PF vibes,
Jean
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How lucky I am... to have known someone who was so hard to say goodbye too.
Take a kid fishin
www.takemefishin.org
I adopted a Vietnam POW/MIA from El Paso, Texas! 
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mynm156
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hope life isn't a big joke, because I don't get it
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Re: Back after a few years
« Reply #6 on: May 4th, 2005, 7:15pm » |
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Hey Nick!
I am sorry that the Beast has come a calling. GOOD VIBES my brother in pain nad glad to have U back!!!
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"Half of the modern drugs could well be thrown out of the window, except that the birds might eat them."
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KMT
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Re: Back after a few years
« Reply #7 on: May 8th, 2005, 10:43am » |
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Nick, sending you PF wishes your way. You couldn't have come to a better place we all understand and we aren't going to tell you "I get migraines" Which we have all heard one time or another.
Funny story to look back on now not then. I was at work with people that just rolled there eyes when I told them I get HAs. Well last Sunday at work I got hit Imitrex didn't even penitrate it and my husband had to pick me up from work. One of the nurses that has always been sarcastic with me, cried with me and admitted that she didn't know how bad they really were.
They can never know how bad it is without experiencing it.
Kim PS. hope you get relief soon....
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aka...................................................... KimY
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zebb37
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God damn the pain
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Re: Back after a few years
« Reply #8 on: May 13th, 2005, 8:10am » |
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even though work colleagues have, over the years, witnessed the odd kip 10 they still are inclined to see me/the pain as whimpish.
There are times I would just love to be able to touch them and let them feel what it's like - just for a minute or two.
It's not sympathy I'm after. It's understanding and acknowledgement.
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duerrs
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Re: Back after a few years
« Reply #9 on: Jul 12th, 2005, 10:01pm » |
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amen, at first my co-workers thought i was just a wimp, but after a few days, the tearing eye, the dilated puple, the intense sweating, nobody is that good an actor, when i get hit at work, everyone by now knows to just stay out of my way for a while. i've said the same thing about letting someone feel the pain only for 10 seconds, after that i usually tell them that i did not always suffer from them, it gets them all thinking, are they next on the list......hopefully not!!!!
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