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ReneeH
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I don't want to join...
« on: Jan 30th, 2005, 8:26am »
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but, I am truly happy that I have found this site!  My headaches started about 6 months ago, but I would only get 1 maybe every 2-3 weeks.  I just thought they were sinus related.  About 2 weeks ago they started coming every other day, and about 4 days ago they started daily.  My doc gave me imitrex tabs and Vicodin and sent me for a CAT scan--no results yet.  The imitrex works, or maybe by the time it kicks in the HA is over.  I'm curious if anyone else had theirs start out slowly like this?  Additionally, the day after the middle of night horror, I have very sore spots on my scalp and a feeling of pressure, particularly on the sides of my head.  This is all still very new to me, but this site at least makes me feel less alone and sounds like I am suffering a lot less than some of you.  My heart goes out to all that experience this nightmare.
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  Edoubleitk   Edoubleitk1
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Re: I don't want to join...
« Reply #1 on: Jan 30th, 2005, 9:28am »
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Hiya Renee,
 
Those who use imitrex tablets successfully are those who really LEARN their warning signs and the trick appears to really catch it very early!!!
 
The complaint tends to be that it either takes too long or you don't know if it did work because the HA might just have run it's course.
 
I personally use the injections....VERY Quick atleast for me.
 
Do you use oxygen? IT is very helpful for MANY of us and it is cheaper than all the other meds and does not have some of the nasty side effects.
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
 
I also did not see any mention of any preventative meds...Print this one out...tons of great info for you to be armed with and to educate your doctor!!!http://www.brightok.net/~mnjday/chtherapy.pdf
 
Put the Vicodins away...it won't help and can make things a bit rougher to say the least.
 
As far as sleep goes ....many of use Melatonin very succesfully to help prevent the night time visits....6-9mg about 30-45 minutes before I will attempt sleep for the night...This has helped me get through the night since August (in cycle since May) with only having about 6 major attacks wake me up.  For me this has made my overall quality of life better because atleast I have the energy to work and battle with the visits from the beast that I get during the day....
 
For some this is ineffective but like anything else in life not everything works for everyone.....
 
Wishing you the best & welcome!
 
Eric
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Re: I don't want to join...
« Reply #2 on: Jan 30th, 2005, 12:38pm »
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Hi Eric,
 
Thanks so much for the wonderful info.  I haven't tried oxygen yet, but will demand it from my Doctor.  the melatonin is also a must.  I guess, like anyone else, I would prefer the more natural remedies.  
 
I do think I will also have to go to the injections--those pills seem to take forever to work.  It's probably only 30-40 minutes, but it seems likes hours.
 
I'm sure that it takes time to become familiar with these attacks, but it is all so frustrating.  I was supposed to go on vacation next week, but now am too afraid to be very far from home.
 
I really appreciate your input and the links you provided.  Sorry I missed the meeting of CH's that was here, it seems that only someone who has experienced this can truly understand it.
 
ReneeH
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  Edoubleitk   Edoubleitk1
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Re: I don't want to join...
« Reply #3 on: Jan 30th, 2005, 12:49pm »
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Renee,
 
Go on vacation!!!!
Do not let these things control your life. You will learn that it sure does suck like hell but you have to live!!!
The fact is if an attack is going to come then it will come whether at home or on the road....in the snow or on your honeymoon in Aruba.....matters not....Call your doctor tomorrow!!!
 
Be prepared use your meds, get O2 and make sure to try as hard as it may be to not fall into the trap that we all do......Anxiety and depression that will come from this.
 
I am here if you ever need to talk!
It took me a long time to learn to cope and I, like all, have my ups and downs but the one thing is to try to LIVE!!
 
Many hugs to you and tons of support is around.
 
Hang in there!
 
E.
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But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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  doctortansy   doctortansy


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Re: I don't want to join...
« Reply #4 on: Jan 30th, 2005, 7:29pm »
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Hi Renee,  
 
I am new here too... I think the frequency of my headaches was very low in the beginning, with my 1st few cycles, but it was so long ago now... This time it was every couple of days for a week, then 2-3/day.  
 
I notice the same thing this time round --sore scalp on the CH top and side of my head --hurts to touch. Very weird.  
 
Also, try the Zomig nasal (or maybe Imitrex nasal, can't vouch for that one yet). It's a little cheaper and easy to use. I was like you, didn't want to leave the house, or go anywhere if I had to drive more than 10 minutes. The Zomig tabs just weren't fast enough. But once I got the nasal spray, it really helped me regain some confidence and feel I have some sort of control over my life. That went a long way to curb some of the anxiety. I am getting out more now, and where ever I go, so does my Zomig. Also, I am always aware of where I might go to recover if I get hit while out and about, even if it's just going to my car, having a plan helps.  
 
Also, once you get a better idea of when it's coming, you'll know when to take the triptan... at least if you're awake. For me, once the shadows turn into "freaky eye", then it's time. If you catch it fast, it's amazing what doesn't happen!  Smiley
 
I'm with Eric, by all means, go on vacation if there is any way that you think you can manage it. I understand, it's still very new for you, especially with the high frequency. Hope you can see your doc tomorrow!
 
Be well,
Debbie
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Re: I don't want to join...
« Reply #5 on: Jan 30th, 2005, 8:11pm »
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Hi Renee,
 
Nobody truly wants to become part of this family, but thank the heavens we can!
 
Learn all you can, read all you can, and take all your new knowledge with you to your doc.  You are your own best advocate and you'll find the support you need here.
 
Like you, my cycles start out very slowly - enough so that I can usually fool myself for awhile that they're not really CH - just some random thing.  By the time I'm having 3 in a week, I know the beast is back and will soon be visiting every night at the same time.  Next day, I'm at the doc for my magic formula - Verapamil, Prednisone and Imitrex injects.  And Melatoninl, of course.
 
Welcome to the family.  Many hugs being sent your way.
 
Kris
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  lastchantsranch   babbleontn
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Re: I don't want to join...
« Reply #6 on: Jan 31st, 2005, 12:47pm »
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Hi Renee and Welcome
 
  I use 02 for abortive (can't take triptans) and it's wonderful . . .keeps me from many a "dance".
 
  Verapamil is my preventative.  I take 6mg Melatonin nightly (OTC and you can start today) seems to help frequency and intensity of nightime hits.
 
  Water/water/water (see link to left)
 
  Try and identity triggers . . . for me alchohol was huge trigger . . .  quit 2/02.
 
   Read, read, read - - much info/caring/sharing and giggles (which we can all use).
 
   Hang arround, ask questions . . . there's help here!
 
   Be safe,  PFDANs
 
     Richard
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ReneeH
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Re: I don't want to join...
« Reply #7 on: Feb 3rd, 2005, 8:14am »
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Thanks to all for your replies!  I'm still kind of hanging with waiting for results from the CAT scan, but the Melatonin has been a blessing!  I've actually had 2 PF nights after taking 6mg.  I do get hit early in the morning, but at least I've had a good night's sleep and can deal with it a little bit better.  Eric, I did ditch the Vicodin and am not feeling anywhere near as depressed.
 
As soon as I can get the Imitrex injections or spray, the O2 and the preventative, I think I will feel a little more ( or hopefully a lot more) in control.
 
Headache?  What a misnomer that is!  We really need to rename this ailment so that people don't think we only suffer from a migraine and need a Tylenol!  If only...
 
So Happy to have found this site,
Renee
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I know God won't give me anything I can't handle. I just wish he didn't trust me so much!
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