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   Author  Topic: Newbie ECHr  (Read 291 times)
Robert the.......
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Newbie ECHr
« on: Mar 8th, 2004, 8:07pm »
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Hey,
 
I'm Scott 23 from Perth Scotland.
I'm diagnosed witth ECH still in first bout (Active since around May june 2003)
diagnosied by both GP + neuro
Take Imgr Jab's No O2 as yet  
currently on a steriod to try to abort the cluster.
 
Scott
 
PS I'm a bit bored its 1:15 local and am expecting the beast to visit in the next hour or two
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Re: Newbie ECHr
« Reply #1 on: Mar 8th, 2004, 10:43pm »
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Hi Scott. So sorry to hear about your diagnosis, but glad you got a correct one. Good luck in your battles with the beast.
 
I'm new here also, but if you're bored and you haven't done so, then definitely read everything available under the menus to the left. I'm sure glad I did. Learned alot, but I'm still baffled also.
 
Currently in week 3 of this episode. Finding this site alone has helped make this episode more bearable than past ones.  
 
If you haven't done so, give the o2 a try.
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Re: Newbie ECHr
« Reply #2 on: Mar 8th, 2004, 11:35pm »
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Welcome to the board, Scott
 
Hope the steroid breaks the cycle for you.
 
By all means, get your doc to give you RX for the 02.
For most folks here, the 02 really seems to do the trick.
 
Read the links on the left.  The one on oxygen gives you the info you need to ask the doc for.
 
Let us know how you are doing.
 
PF vibes,
 
Jean
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Re: Newbie ECHr
« Reply #3 on: Mar 8th, 2004, 11:57pm »
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Scott,
 
The steriod may keep it under wraps while you are taking it, and the imitrex will do perhaps for anything that breaks through during that time.  But steriod have a length of time which they can be taken and are usually tapered down in weeks.  
  Should the clusters not choose to leave when the steroid is discontinued, the abortive that you have may need to be kept handy and in large supply.
  A preventive is usually introduced while on the steroid so that when the steriod is tapered down, the  
preventive will help, should the occurance of headaches wish to continue.  Taking abortives alone can extend a cycle because it may keep coming back without a preventive to chip in and help with the job to curtail the frequency of occurance.
  Counting on a steriod alone to knock out or abate a cycle by itself is hopeful.  I've learned to not be to optimistic about a cluster cycle going out in a short span of time without it attempting to gain strength again  
when undetered by a steady preventive.
  Just mentioning this because when I had not found an effective preventive for myself and was left to survive on abortives alone, the cycle chose to stay longer with many, many painful days and nights which finally made me go out and keep searching again for an abortive which works.  
  Not questioning your doctors, but if they are gambling soley on the steriod ending the cycle and the plan doesn't go as thought, you are the one who will be paying for their gamble.
 
Welcome, just tossing in two cents worth.
 
Kevin M
 
« Last Edit: Mar 9th, 2004, 12:02am by Kevin_M » IP Logged
Robert the.......
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I'm gona get that CH Beastie

   


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Re: Newbie ECHr
« Reply #4 on: Mar 9th, 2004, 7:18am »
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Cheers guy's
 
a stable preventitive is actually a problem for me!
My doc treats me for an Ozzy style tremor using Propranolol which works for the tremor nothing else. Should the steriods fail he will have to withdraw the treatment for the tremor and wait till the Prop is fully clear of my system before attempting me on a full time preventitive, then find a new treatment to stop a 23year old walking about like a jack hammer on heat!!!!
 
As with all CH'rs the way forward is never the simple one is it.
 
Cheers
 
Scott
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Re: Newbie ECHr
« Reply #5 on: Mar 9th, 2004, 8:04am »
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Hi Robert the......
 
Where's William Wallace?
 
Oh yes, silly me, he's on the Meds board killing Brits! Grin
 
 
Wendy the Brit Wink
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Re: Newbie ECHr
« Reply #6 on: Mar 9th, 2004, 9:32am »
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Welcome aboard Scott!
 
There are some meds that can be taken at the same time as propranolol.  However, some of these meds could make your tremors worse, but I think there are some still out there that should fit you.  That's not to say they would work though.  I'm not sure what all you have tried.
 
...damn, since may/june 03?  That sucks!
 
Hang in there.
 
Chris
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Robert the.......
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Re: Newbie ECHr
« Reply #7 on: Mar 9th, 2004, 9:54am »
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AS per other preventitives,
 
I've been through Pizotifen (short course) For seditive purposes (It doesn't work in cycle)
and Indometacin which I don't know the US version but it just burnt my stomach lining and did nothing else.
 
there are others on my Neuros drug menu that my GP still has to try but as with our wonderfull NHS there is nothing done in a rush. It took 5-6weeks to get the treatment letter from the Neuro to my GP from a hospital only 1/2 a mile away from the surgery.
 
My GP's next step is Verap. with a new tremor treatment. We shall see.
 
Scott
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Re: Newbie ECHr
« Reply #8 on: Mar 9th, 2004, 10:18am »
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on Mar 9th, 2004, 9:54am, Robert the....... wrote:
Indometacin which I don't know the US version but it just burnt my stomach lining and did nothing else.

 
I believe this is normally used to diagnose CPH, although some CHers have claimed relief with it.  That side effect seems quite common though.
 
I don't know if you can get melatonin OTC where you are or not, but it sure seems to help quite a few folks (not me).
 
Other prevents I was thinking of was topamax and depakote, but I believe they would possibly add to your tremor issue.
 
Speaking out of ignorance because I do not have tremors...  I would think one would live with the tremors in any attempt to treat CH.  Of course, I know nothing of your situation as far as severity of either goes, and I am definitely not suggesting adding to the tremors.
 
I have been chronic for over 10 years.  I have said it before...  If slaming my fingers in a car door every day would prevent the CH attacks, I'd do it in an instant!
 
Hell, I'd chop the little bastards off if I thought it would help!   Grin
 
Hope you find something that works Scott!
 
Chris
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Where does the white go in a snowman when the snow melts?
Robert the.......
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I'm gona get that CH Beastie

   


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Re: Newbie ECHr
« Reply #9 on: Mar 9th, 2004, 10:36am »
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cheers Chris,
 
If i had to I'd live with the tremor to be pain free.  
I to would hack bits off if i would be able to live without the beast for the rest of my days.
Unfortunatly my Tremors were easier to treat than the CH. and Lets put it this way in the space of 3 years i seriously had to consider having to quit many aspects of my life because the tremor was making my life hell. SEE ozzy osborne see me down my left hand side the DOC though i had early parkisons syndrome at 23.  
 
Scott
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Re: Newbie ECHr
« Reply #10 on: Mar 9th, 2004, 2:25pm »
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Like I said...  I was speaking out of ignorance.  Truly a crappy combo you go there!
 
Chris
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Robert the.......
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I'm gona get that CH Beastie

   


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Re: Newbie ECHr
« Reply #11 on: Mar 9th, 2004, 2:31pm »
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Na your fine Chris.
 
If life was a breeze it would be boring I like a challenge me. just wasn't expecting him upstairs to throw me all that at once.
With medical science as it is i can still deal in about 95% of my life without fuss or giving away that really i am Ozzys other son!!  Cheesy Grin
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Re: Newbie ECHr
« Reply #12 on: Mar 9th, 2004, 5:03pm »
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Hey welcome aboard.  I'm actually related to that opportunistic S.O.B. Robert the Bruce. lol.  And somehow it just doesn't feel right calling a Scotsman, Scott.  Ya know what I mean.
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Robert the.......
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I'm gona get that CH Beastie

   


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Re: Newbie ECHr
« Reply #13 on: Mar 9th, 2004, 5:41pm »
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Its only a issue to Non Scots calling a Scots scot Scott!! Grin
 
I'm  a 5th cousin type thing or something to the Bruce.
All i got is a fiery Scots temper and a willingness to stand my ground!
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Re: Newbie ECHr
« Reply #14 on: Mar 9th, 2004, 5:43pm »
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All I got is a preference for Glennfidich, Glenlivet, Johnny Walker, well you know how it is. Grin
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Re: Newbie ECHr
« Reply #15 on: Mar 9th, 2004, 5:48pm »
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hey, you two are related!
 
How cool is that?
 
More evidence for the CH gene!
 
W
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Robert the.......
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I'm gona get that CH Beastie

   


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Re: Newbie ECHr
« Reply #16 on: Mar 9th, 2004, 5:48pm »
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Glad to here it!!! why else was the amber nector born Grin
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Re: Newbie ECHr
« Reply #17 on: Mar 9th, 2004, 5:54pm »
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on Mar 9th, 2004, 5:48pm, pubgirl wrote:
hey, you two are related!
 
How cool is that?
 
More evidence for the CH gene!
 
W

Shit, Wendy, given my ancestor's propensity for fornication, I'm probably related to all of you. lol
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Robert the.......
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I'm gona get that CH Beastie

   


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Re: Newbie ECHr
« Reply #18 on: Mar 9th, 2004, 6:25pm »
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The Scot's Gene is everywhere Its what it gets mixed with that would cause the CH, i have a wee touch of english in me and am constantly at war with myself Grin
 
Scott
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Re: Newbie ECHr
« Reply #19 on: Mar 9th, 2004, 6:30pm »
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on Mar 9th, 2004, 6:25pm, Robert the....... wrote:
The Scot's Gene is everywhere Its what it gets mixed with that would cause the CH, i have a wee touch of english in me and am constantly at war with myself Grin
 
Scott

Myself, Scot, Irish, English, German, and just a touch of Dutch.  I hate myself, but I sure can handle my booze.
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Robert the.......
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I'm gona get that CH Beastie

   


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Re: Newbie ECHr
« Reply #20 on: Mar 9th, 2004, 6:32pm »
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Thats the Scot's in you Don't let Wendy tell you otherwise.  
 
very Friendly your family weren't they? Cheesy Wink Grin
Scott
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Re: Newbie ECHr
« Reply #21 on: Mar 9th, 2004, 6:33pm »
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on Mar 9th, 2004, 6:32pm, Robert the....... wrote:
very Friendly your family weren't they? Cheesy Wink Grin
Scott

Yeah I think we had more than one traveling salesman in the lot, perhaps a few tax collectors too.  lmao.  I know there were some horse thieves in the mix (bloddy Stewarts). laugh
« Last Edit: Mar 9th, 2004, 6:34pm by thomas » IP Logged
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