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hopefull
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hopefull
« on: Jul 22nd, 2003, 7:25am »
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Homealone has imformed me I did not sufficiently grovel at the feet of the Lords and Ladies of the Realm last night...that I didn't answer enought or the right questions Yes I'm 46 years old and my Dad still tries to protect me... I'm okay with what ever you throw at me I realize you have decided I'm a fake, sympathy junkie...if only that were true then I wouldn't hurt like I do....Ask me anything....I Let the INQUISITION
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hopefull
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Re: hopefull
« Reply #1 on: Jul 22nd, 2003, 7:26am »
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begin I'll asnswer you to the best of my ablitiy and if you kill me off so be it1
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Re: hopefull
« Reply #2 on: Jul 22nd, 2003, 7:36am »
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Quote:
Ask me anything

 
OK, here's one.....
 
In Salt Lake City, there is/was a Children's Hospital up on the East Bench. What is the name of it now?
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Re: hopefull
« Reply #3 on: Jul 22nd, 2003, 7:41am »
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At least you starting off with a little humor I guess
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Re: hopefull
« Reply #4 on: Jul 22nd, 2003, 7:43am »
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I thought it was sarcasm...still I have been wrong before... ;D
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hopefull
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Re: hopefull
« Reply #5 on: Jul 22nd, 2003, 7:45am »
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What no Questions after all the bitch
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hopefull
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Re: hopefull
« Reply #6 on: Jul 22nd, 2003, 7:45am »
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sorry "bitching"
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Re: hopefull
« Reply #7 on: Jul 22nd, 2003, 7:46am »
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Quote:
Ask me anything

 
I did.
 
Quote:
I'll asnswer you to the best of my ablitiy

 
You didn't.  
 
Next question.........Why didn't you?
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Re: hopefull
« Reply #8 on: Jul 22nd, 2003, 7:47am »
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I have a question.
 
Why are you doing this, is your life really that empty of anything else?
 
Hooter
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Re: hopefull
« Reply #9 on: Jul 22nd, 2003, 7:47am »
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YOU took it as bitching, guess your wrong too some of the time.
 
Please IM me if I can help you in anyway, I think it'll be better for both of us.
 
Cathy
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hopefull
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Re: hopefull
« Reply #10 on: Jul 22nd, 2003, 7:49am »
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I came here looking for others who hurt like i do and understand...Yes I have a life a very painfull one....I would rather be doing anything else than dealing with this
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Re: hopefull
« Reply #11 on: Jul 22nd, 2003, 7:50am »
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Welcome back hopefull.  Im hopefull you'll stay around.  I kill me sometimes ;D.
 
Questions ?  ok
 
When you are going though an attack that goes on for hours are there times when the pain subsides for a minute or two, gains strength for 15 or 20 and subsides again only to return time and time again.  Making an attack seem like a straight 10 hour ride when in reality you've had 10 or 15 back to back?
 
Hope that makes since.  It's early.
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hopefull
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Re: hopefull
« Reply #12 on: Jul 22nd, 2003, 7:54am »
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yes it's like labor pains but for me it seems to never go away...maybe i'm tensing up in aticipation of the next peak...Neuro thinks that is why my neck freezes up all I know is I just seem to hurt constantly to one degree or another...morning to night
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Re: hopefull
« Reply #13 on: Jul 22nd, 2003, 8:03am »
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on Jul 22nd, 2003, 7:50am, echo wrote:
Making an attack seem like a straight 10 hour ride when in reality you've had 10 or 15 back to back?

 
Good question, echo.   I regularly get HAs between 4 and 6 hrs.  Being med-free, I get to find out just how long they do last.   Usually, I don't feel any subsiding.
 
Regardless, 20 hrs seems like a long time.  I'm not sure if I could handle that without an abortive.  I'd be ready for a little rubber room after that.
 
just my .02 worth,
grant
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hopefull
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Re: hopefull
« Reply #14 on: Jul 22nd, 2003, 8:05am »
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The regular MD tried zomig with muscle relaxers it did nothing for me this was when they thought it was migrains then they tried imitrex with hydrocodne still didn't work...I mean nothing not even a dent...this last month they sent me to the neuro and he gave me (after telling me I have clusters) verapamil with indomicin and Firocet that did not prevent or help the attack I had 3 weeks after starting that it was a bad one so last thursday he upped the verapamil and changed pain killers to ultracet and added topral-xl I go back today to follow up...I am feeling better but don't know if it's the meds or If my cycle is ending..
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Re: hopefull
« Reply #15 on: Jul 22nd, 2003, 8:09am »
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How much verapamil are you taking?
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hopefull
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Re: hopefull
« Reply #16 on: Jul 22nd, 2003, 8:10am »
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My husband is very good to me comes home from work to try and keep tha panice at bay...my son has become very good at neck rubbing, they understand when I need back up My son has bad headachs the worst then my daughter and my youngest has headaches but not bad...I try to keep on top of them and make sure they get the help they need two are married ...and like dad i still watch out for them
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Re: hopefull
« Reply #17 on: Jul 22nd, 2003, 8:12am »
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Hopefull, ask the neuro to get you on prednisone.
 
That aborts the cycle for most clusterheads while the preventatives kick in.
 
It's known as the transition phase of treatment.
 
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Re: hopefull
« Reply #18 on: Jul 22nd, 2003, 8:12am »
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I'ts not much 180 as of Thursday...I'm very sensitive to meds..have trouble breathing sometimes so he's taking it slow
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Re: hopefull
« Reply #19 on: Jul 22nd, 2003, 8:13am »
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So everyone in your family has these headaches?
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Re: hopefull
« Reply #20 on: Jul 22nd, 2003, 8:14am »
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Ch'ers generally need to be on verapamil in the 480mg per day range and many take 960.  You can also combine it with lithium.  That and pred are are the best cocktail out there for CH for most people.
 
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hopefull
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Re: hopefull
« Reply #21 on: Jul 22nd, 2003, 8:14am »
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He mentioned steriods as a possiblity and h2o but It's early in the game 1 month of being treated by him
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hopefull
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Re: hopefull
« Reply #22 on: Jul 22nd, 2003, 8:17am »
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MY father and older sister...Me my daughter has migrains as well as my middle son my youngest son and husband don't have migrains but regular type headaches....My concern is for my older son becasue Ch i'm told runs hi in males...
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Re: hopefull
« Reply #23 on: Jul 22nd, 2003, 8:22am »
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The actual ratio of male to female for CH is now at 2.1:1 M:F.  This is the latest info that is out, we just finished getting all the new info on things at the convention.
 
Even though it's early in the game you need to be on a much higher dose of verap than that.  The verap takes a couple of weeks to get in your system, it's a preventative treatment.  The pred is used as a transitional treatment while the verap gets up to level in your system.  
 
Mention it to him and see about getting on those meds and getting imitrex as an abortive and O2 as an abortive as well.
 
Migraine along with CH can run together and cause a nightmare.
 
I posted to the mis/un diagnosed thread, read that, there are the names of the 4 leading docs in CH there that you can try to contact about dealing with aberrations in refractory CH.
 
Please remember that very few neuros have any experience at all with real life CH.  They get 5 hours of education on headaches, all headaches, while in school.  That straight from the mouth of one of the top researchers on the east coast.
 
« Last Edit: Jul 22nd, 2003, 8:24am by catlind » IP Logged

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Re: hopefull
« Reply #24 on: Jul 22nd, 2003, 8:29am »
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I understand ...while I was waiting in the Neuros office I talked to others 8 out of ten were there with head aches...He has lots of literiture and was very imformative..besides Insurance being what it is you see who they tell you to see...but all -n-all he seemed up on cluster imformation
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