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Cluster Headache Help and Support >> Getting to Know Ya >> Newbie asking???
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Message started by CCFD Lt on Jun 5th, 2011 at 11:56pm

Title: Newbie asking???
Post by CCFD Lt on Jun 5th, 2011 at 11:56pm
:'( I am again a devotee to this site, I am back because the cycles won't stop, takeinf 25 mg zomig at on set(when the ghost is near but the beast still only lurks) and then another 25 mg a hour later. But i still am shaken, torn and mauled by the beast for hours at a time. This has lasted six weeks so far . Honestly folks I am getting scared, I do not say this lightly as I am a 55 yr old male, retired Marine and a volunteer firefighter so I think I can honsetly say I do not scare easily. I have to go thru the VA for my meds and only get 9 tabs per script which go so quickly that I have nothing left till the refill comes in the mail in 10 to 14 days.
ANY ideas would be helpfull, would write more but the beast stirs.  >:(

Title: Re: Newbie asking???
Post by Racer1_NC on Jun 6th, 2011 at 12:14am
Oxygen works wonders for many of us......take a moment and read here:START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE if you haven't already done so. Personally, I swear by it.....

Title: Re: Newbie asking???
Post by bejeeber on Jun 6th, 2011 at 2:31am
What Racer1 said about the newer more effective way to administer O2 that legions of us here swear by, but doctors generally haven't caught onto yet.

And there's a load of other stuff that some CH'ers have found dramatic relief with. For instance:
  • Melatonin before bed for night hits prevention. 9 to 21 mg.

  • The high dose vitamin D3 regimen discussed here:START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

  • The powerful clusterbusters approach to prevention: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

  • Red Bull type energy drink at onset of the attack to aid the effectiveness of the O2.



Title: Re: Newbie asking???
Post by Guiseppi on Jun 6th, 2011 at 8:00am
I use an old push button style paramedic mask that a fire fighter gave me a hundred years ago. (I'm retired sheriff) I removed the mask and just draw off the stone. This way I get 100% 02 to my lungs, at as high a breathing rate as I want. Used this way my abort times run 6-8 minutes. Grab an E-Tank from work and give it a shot, I think you'll be amazed at how fast you can send beasty running and save the expensive pills for when you're caught away from the 02. I kept an E-Tank in the trunk of my cruiser when I was on cycle. I get about 6-8 aborts per E-Tank so it's only a couple of bucks per abort.

I'm 51, a 33 year CH'er, 02 has really taken a lot of fear away from old beasty for me. Welcome to the board.

Joe

Title: Re: Newbie asking???
Post by wimsey1 on Jun 6th, 2011 at 8:24am
Dittos to all above, and we do get feeling scared. CHs come with a bunch of good news-bad news bits.  Good news: it won't kill you; there are interventions available that actually work; this site; a growing body of medical research.  The bad news: it won't kill you; the interventions need to be personalized; people who don't have CHs telling you it's just a headache how bad can it be; many doctors have only only a passing acquaintence with this horrible affliction.

All in all: not a bad place to be in except when being hit by the beast. Then it sucks, the world sucks, the pain sucks, everyone around me sucks....you know what I mean. Faith, hope, a good outlook, a positive determination not to let this beast destroy the life I have in between hits...these are your best defensive weapons.

BTW, I am a 24 year sufferer who is chronic and has been for the past 4 years. Without this site, I would have had no life at all left. You're in a good place, man. Take what you read here and apply it. Blessings. lance

Title: Re: Newbie asking???
Post by Bob Johnson on Jun 6th, 2011 at 11:11am
Please tell us where you live. Follow the next line to a message which explains why knowing your location and your medical history will help us to help you.

Cluster Headache Help and Support › Getting to Know Ya › Newbies, Help us...help you

You can add your location by editing your profile. CP Member --> profile
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If one med is not  working for you there are others in the same class which can be tried. Imitrex has greater kick than zomig (using the injection form) and would be a worth a try.

So raises the question: who is treating you? Ideally a headache specialist, especially when you treatment progress is iffy. If you have the option:

LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE; On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

6. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.






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