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Long time sufferer, first time poster. (Read 718 times)
daddorn
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Long time sufferer, first time poster.
Apr 10th, 2012 at 12:28pm
 
  I can remember being 10-12 years old and having these awful headaches for hours at a time. they didnt happen everyday but from time to time.  As i got older they would come usually in the winter months, everyday, and for a month or two.  I seen eye doctors, neurologists, chiro's, allergists, dentists to try and figure it out.  I have gone spells of 2-3 years without an attack then out of nowhere they start again.  Like many of you I have been very close to suicide.  My children and wife have seen me through several attacks, and I am so thankful for their understanding.  Imitrex injections have been the only thing to help.  I usually take a steaming hot shower and that seems to help.....sometimes.  I don't know if it's the steam or it  just relaxes me to the point of being able to  cope.  Most people have no idea and I cannot convey the amount of pain that is involved during an attack.  This is great to know that others deal with this and I am not alone.  I live in NW Ohio, 40 yr old male.  Hoping that the last attack is the LAST attack.[pre][/pre]
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Bob Johnson
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Re: Long time sufferer, first time poster.
Reply #1 - Apr 10th, 2012 at 1:03pm
 
If at all possible, find a headache specialist. This is a far more complex area of medicine than is gnerally understood and many docs lack basic education/training treating headache.
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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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register; On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register 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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register 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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If a specialist isn't in the cards, then you must learn more about Cluster than your local docs are likely to have. We often have to help our doc learn how to treat us!

See the PDF file, below, for a "handbook" of the commonly used meds along with the latest evaluations of their effectiveness.
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Print out this full article:




Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]
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Explore the buttons, left, starting with the OUCH site and its many internal links.
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Since you've been wrestling with our friend for some time, suggest you review the following to see if there is any need/wisdom there for you.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
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Read the messages here and you will find yourself an benefit from others' experience.
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Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register (96 KB | 16 )

Bob Johnson
 
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RichardN
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Re: Long time sufferer, first time poster.
Reply #2 - Apr 10th, 2012 at 3:34pm
 
Hello daddorn and Welcome to Clusterville

  So very glad you found us.  We DO understand!  We DO know the pain of the beast! . . . and you've just found the motherlode of CH info/caring/sharing.

  First, glad you have the Imitrex (I can't use due to some artery blockage and high cholesterol), but you need to call your doc and get a script for oxygen . . . MUCH, MUCH cheaper, effective for 70%+ of clusterheads to abort attacks.  If used at the first sign of attack, most can abort in minutes (and save the trex for those attacks the 02 doesn't kill), with no side effects.  Call your local med 02 suppliers and ask what their cash price is for "E" tanks as most insurance won't pay for 02 unless you have low blood oxygen levels . . . so . . . many docs won't prescribe.  Then you'll need a regulator that goes to at least 15 lpm (many prefer the 25 lpm reg), and a non-rebreather mask (the one with the bag), preferably an O2ptimask, with big green 3-litre bag, designed for clusterheads . . . . 02 is a miracle abortive for most of us.

  Check out the D3 regimen described in Batch's post on the Meds, Therapies board . . "123 days PF and counting . . ."  I've been chronic since 1/01, and have now been painfree since mid-November due to this course of OTC supplements.

  You've got a lot of reading to do . . . and feel free to ask any questions you might have.  Everyone here truly understands your pain.

    Be Safe,    PFDANs


      Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
lastchantsranch  
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