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(Message started by: KimberH on Oct 31st, 2007, 2:51pm)
Title: Hi
Post by KimberH on Oct 31st, 2007, 2:51pm
I am Kimberly and I suffer from Headaches.   I at one time was diagnosed with CH but have had a poor phycisian that treated me for the longest for migrains and was close minded to anything else.  Since then I have changed Dr. and still don't know where I stand besides the fact that I was hospitalized for 10 days just recently for what seemed like the most horrible pain like that of last year & all the way back to 2002...  I am currently on Topamax 200mg, Verapamil 120mg (tappering off), Amitryptaline 75mg (tappering off), Dilantin 300mg, Indomethicin 25mg three times a day.  I feel like a walking pharmacy as well as to abort the pain I take Dilaudid by mouth 8mg.  

I am weak lately due to my stay in the hospital and still can't hold a full days work.  Today was my first day back I work as a Nurse in an OR in Powell WY.  I got hit 4 hours into the shift I got sweaty and it came on all of the sudden.  I spent the next 40min trying to disappear I am thankful to have staff that care but the pain just kept coming and I left for home.

I am not here for sympathy just telling my story and like others looking for answers.  I appreciate any advise that you might have.
Title: Re: Hi
Post by seasonalboomer on Oct 31st, 2007, 3:06pm
Welcome,

since you are in a healthcare environment have you ever tried 15 lpm of O2 using  a non-rebreather mask to abort a headache. Also, if it is clusterheadache I'm surprised I didn't see Imitrex on your list. Between O2 and Imitrex these two abortives allow many of us to not even bother with preventatives like your list.

Scott
Title: Re: Hi
Post by KimberH on Oct 31st, 2007, 3:28pm
I do have O2 and nonrebreather masks that I use majority of the time they are greatly effective except this time.  My last Dr. took me off of the Imitrex said they were causing rebound HA and put me on Ralpax well it turned out to not take this horrible HA away and I suffered.  I have Imitrex in small supply but the Dr. that I am with now is still unsure what He wants to call this so Dilaudid is all he leaves me with to abort the HA...
The meds I am on now I am so unsure if they are what stopped it or if the cycle is just ending.  All I know is the hits still follow but these I can handle.
Title: Re: Hi
Post by vietvet2tours on Oct 31st, 2007, 3:53pm

on 10/31/07 at 15:28:45, KimberH wrote:
I do have O2 and nonrebreather masks that I use majority of the time they are greatly effective except this time.  My last Dr. took me off of the Imitrex said they were causing rebound HA and put me on Ralpax well it turned out to not take this horrible HA away and I suffered.  I have Imitrex in small supply but the Dr. that I am with now is still unsure what He wants to call this so Dilaudid is all he leaves me with to abort the HA...
The meds I am on now I am so unsure if they are what stopped it or if the cycle is just ending.  All I know is the hits still follow but these I can handle.


D's don't work.You should know this stuff,Get some oxygen goin.

  Potter
Title: Re: Hi
Post by Linda_Howell on Oct 31st, 2007, 4:18pm

Quote:
D's don't work.You should know this stuff,Get some oxygen goin.

Thanks for saying it for me Potter.

Kim,  You said your were hospitalized for 10 days.  

Because of CH?  

You said you weren't after sympathy but wanted advice, so I have to ask you what did they do for you for 10 days?  Some here go into the hospital for the DHE  IV, but I don't think it's for that long...You also said you were given Dilaudid which you know is a very strong narcotic and you sure shouldn't be at work in a hospital while under the influence of that,  much less driving.   I would suspect rebounds from that drug alone.


Can you tell us more?  Also I am very sorry that you  have such a poor physician and that he is not seemingly interested in doing the research in order to treat you more effectively.  There is a lot of info right here that you can print out and take to him...or see someone else that is more familiar with CH.



   http://www.ouch-us.org/chinfo1.htm

Linda Howell
Title: Re: Hi
Post by KimberH on Oct 31st, 2007, 8:50pm
Please Help me to know what is DHE???  I have only been pushed when hospitalized to help stop the pain...I don't really remember much of the time but do know that Dilaudid PCA and by mouth is all that I was ever given and never seemed to get better as you well know...  I saddly didn't have a thought of how to stop the pain but know that dilaudid eased it in the past... :-/  Forgive my ignoriance.  People in the hospital were so at a loss of how to help and I was so doped up I didn't know if I was coming or going.  My Dr. just kept pushing more Solumedrol and more other drugs and still nothing was helping it was thanks to my mom who took me out of the hospital and got an appt. with a DR. who said No Dilaudid IV he was out for the heart of the problem.  I am just still in limbo...  with him is all...  This guy is new as of this time and I am trying him out since the last wouldn't listen...  I only take Dilaudid when at my worst and yes I go home no pt care or driving promise....
Title: Re: Hi
Post by vietvet2tours on Oct 31st, 2007, 10:41pm

on 10/31/07 at 20:50:24, KimberH wrote:
Please Help me to know what is DHE???  I have only been pushed when hospitalized to help stop the pain...I don't really remember much of the time but do know that Dilaudid PCA and by mouth is all that I was ever given and never seemed to get better as you well know...  I saddly didn't have a thought of how to stop the pain but know that dilaudid eased it in the past... :-/  Forgive my ignoriance.  People in the hospital were so at a loss of how to help and I was so doped up I didn't know if I was coming or going.  My Dr. just kept pushing more Solumedrol and more other drugs and still nothing was helping it was thanks to my mom who took me out of the hospital and got an appt. with a DR. who said No Dilaudid IV he was out for the heart of the problem.  I am just still in limbo...  with him is all...  This guy is new as of this time and I am trying him out since the last wouldn't listen...  I only take Dilaudid when at my worst and yes I go home no pt care or driving promise....


Your verbage is vaguely familiar.
     
Potter
Title: Re: Hi
Post by Rosybabe on Oct 31st, 2007, 10:50pm
I am sorry Kim you are in such pain. Dilaudid will just dope you but will not make the beast go away. I really think you need to see other Doctor, one that is willing to work with you. Here is some information you can show to your Doctor in your next appointment:

http://www.plainboard.com/ch/chtherapy.pdf

Good Luck and pain free days and nights for you..

                                                  Rosy.
Title: Re: Hi
Post by KimberH on Oct 31st, 2007, 11:08pm
Thanks Rosy this information along with more that I have printed from the site has given me much to read and provide when I go to my two week follow up.  I will hopefully see what this Dr. has in mind and see if he thinks that I am on the right track I would like to see that in the future DHE be used if I can show him what I have found and get through...  I will also see what changes he makes if any...   :-/You and Linda provided me with some good information... Thanks...
Title: Re: Hi
Post by Linda_Howell on Nov 1st, 2007, 1:51pm

 Here is another link to the DHE treatment that goes into a little more depth.  

  http://findarticles.com/p/articles/mi_m0BJI/is_9_30/ai_63125273

 I find it so hard to believe that any Dr. would admit you to a hospital and do nothing but pump you full od narcotics for 10 whole days.  That seems so wrong.  

Everyone here was new to this condition of ours,  at the beginning, but we found out things and researched like crazy and lots of us had a hand in putting forth all the info that is at our fingertips here and on  OUCH.   When we were educated about CH...we then were able to educate our Dr.s or at the very least know when to get a new Dr. who would work with us in our treatment.

 So now...go do a lot of reading to the links to the left of here,  Kim.  There will be a pop quiz next week.   ;;D


Linda
Title: Re: Hi
Post by cynjeep89 on Nov 6th, 2007, 8:44pm
Kim,

Your writing sounds familiar to me, too.  Were you here last year around the same time?

Cyn
Title: Re: Hi
Post by ski2k on Nov 9th, 2007, 11:14am
  Kim... You mentioned earlier you had a two week follow-up appt with your doc. I was just wondering how that went, and if you found anyhting more out?

Keep us posted!
Adam
Title: Re: Hi
Post by vietvet2tours on Nov 9th, 2007, 11:58am
Kim from Bridger Mt. The drama continues.

             Potter
Title: Re: Hi
Post by chewy on Nov 9th, 2007, 7:11pm

Quote:
I work as a Nurse in an OR



Quote:
Please Help me to know what is DHE???


Hmmmmm ????
Title: Re: Hi
Post by vietvet2tours on Nov 9th, 2007, 7:17pm

on 11/09/07 at 19:11:20, chewy wrote:
Hmmmmm ????

I would like a hmmmmmmmmmmmmmmmmm.

    Potter
Title: Re: Hi
Post by Linda_Howell on Nov 9th, 2007, 8:44pm


Her profile says she's in Wyoming now.

   Have we been duped?    If so,  I hate it when  people try to help with all good intentions ...and this is the result.   >:(
Title: Re: Hi
Post by chewy on Nov 9th, 2007, 9:29pm

Quote:
Kim from Bridger Mt.


Thats one hell of a commute to work every day.
Title: Re: Hi
Post by vietvet2tours on Nov 9th, 2007, 9:44pm

on 11/09/07 at 20:44:52, Linda_Howell wrote:
Her profile says she's in Wyoming now.

   Have we been duped?    If so,  I hate it when  people try to help with all good intentions ...and this is the result.   >:(
Ain't the first time and not the last time,but yeah we been duped.

          Potter
Title: Re: Hi
Post by vietvet2tours on Nov 9th, 2007, 9:46pm

on 11/09/07 at 21:29:17, chewy wrote:
Thats one hell of a commute to work every day.
Less than 50 miles.

     Potter
Title: Re: Hi
Post by chewy on Nov 9th, 2007, 11:32pm

Quote:
Less than 50 miles.


Really?

Back to Geography - R -Us for me then.
Title: Re: Hi
Post by vietvet2tours on Nov 10th, 2007, 10:36am

on 10/31/07 at 14:51:51, KimberH wrote:
I am currently on Topamax 200mg, Verapamil 120mg (tappering off), Amitryptaline 75mg (tappering off), Dilantin 300mg, Indomethicin 25mg three times a day.  I feel like a walking pharmacy as well as to abort the pain I take Dilaudid by mouth 8mg.  

I am weak lately due to my stay in the hospital and still can't hold a full days work.  Today was my first day back I work as a Nurse in an OR in Powell WY.  .



I would avoid the Hospital in Powell. OR nurses sew people up, with all them drugs in ya you couldn't tie your own shoes.

     Potter
Title: Re: Hi
Post by Opus on Nov 10th, 2007, 11:29pm
(((Kim))) are you ok?

  Everyone, she sounds really drugged up, this is not how she really is.

I hope you get some proper treatment soon.

Paul
Title: Re: Hi
Post by chewy on Nov 11th, 2007, 10:43am
What part dont you get?
Title: Re: Hi
Post by alienspacebabe on Nov 11th, 2007, 11:30pm
Kim - You don't sound good - not the least bit like yourself. I'm concerned......
Title: Re: Hi
Post by Linda_Howell on Nov 12th, 2007, 12:09am


Liz and Paul must know something we don't, I guess.   :-/
Title: Re: Hi
Post by alienspacebabe on Nov 12th, 2007, 12:39am
Kim is a fantastic, intelligent, hard-working woman who had to leave the board after her life turned upside-down a while back.

This just doesn't sound like the "KimY" we know and love.....


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