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Cluster Headache Help and Support >> Getting to Know Ya >> hello
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Message started by mvglasser on Dec 10th, 2010 at 4:53pm

Title: hello
Post by mvglasser on Dec 10th, 2010 at 4:53pm
hello, my name is mike and i am from illinois. I have suffered with cluster headaches sence i was 21, i am now 51. I was in remission for the past 10 yrs. Now they have stared up again....and i don't know if i am strong enough to go throught it all over. I have between 4 and 8 a day, some will last as long as 6 hours.
   

Title: Re: hello
Post by Bob Johnson on Dec 10th, 2010 at 4:59pm
Chances are in your favor that they are CH, BUT late onset Clusters can also mimic other, more serious problems. Would strongly suggest seeing a headache specialist for a work-up.
===
Cephalalgia. 2010 Apr;30(4):399-412. Epub 2010 Feb 15.

Cluster-like headache. A comprehensive reappraisal.
Mainardi F, Trucco M, Maggioni F, Palestini C, Dainese F, Zanchin G.

Headache Centre, Neurological Division, SS. Giovanni e Paolo Hospital, Venice, Italy. federico.mainardi@ulss12.ve.it

Abstract
Among the primary headaches, cluster headache (CH) presents very particular features allowing a relatively easy diagnosis based on criteria listed in Chapter 3 of the International Classification of Headache Disorders (ICHD-II). However, as in all primary headaches, possible underlying causal conditions must be excluded to rule out a secondary cluster-like headache (CLH). THE OBSERVATION OF SOME CASES WITH CLINICAL FEATURES MIMICKING PRIMARY CH, BUT OF SECONDARY ORIGIN, led us to perform an extended review of CLH reports in the literature. We identified 156 CLH cases published from 1975 to 2008. THE MORE FREQUENT PATHOLOGIES IN ASSOCIATION WITH CLH WERE THE VASCULAR ONES (38.5%, N = 57), FOLLOWED BY TUMOURS (25.7%, N = 38) AND INFLAMMATORY INFECTIOUS DISEASES (13.5%, N = 20). Eighty were excluded from further analysis, because of inadequate information. The remaining 76 were divided into two groups: those that satisfied the ICHD-II diagnostic criteria for CH, 'fulfilling' group (F), n = 38; and those with a symptomatology in disagreement with one or more ICHD-II criteria, 'not fulfilling' group (NF), n = 38. Among the aims of this study was the possible identification of clinical features leading to the suspicion of a symptomatic origin. In the differential diagnosis with CH, red flags resulted both for F and NF, older age at onset; for NF, abnormal neurological/general examination (73.6%), duration (34.2%), frequency (15.8%) and localization (10.5%) of the attacks.

WE STRESS THE FACT THAT, ON FIRST OBSERVATION, 50% OF CLH PRESENTED AS F CASES, PERFECTLY MIMICKING CH. THEREFORE, THE IMPORTANCE OF ACCURATE, CLINICAL EVALUATION AND OF NEUROIMAGING CANNOT BE OVERESTIMATED.

PMID: 19735480 [PubMed
====
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.






Title: Re: hello
Post by Ginger S. on Dec 10th, 2010 at 9:16pm
Welcome mvglasser !

Ditto what Bob said!  Get it checked out!

Title: Re: hello
Post by Gidget on Dec 10th, 2010 at 10:48pm
Hi Mike,  I am from eastern PA, originally Ohio. I first had a CH 8 years ago at the age of 45. It lasted 3 months. Luckily I was diagnosed fast as I was working at a pharma company working on a team for headache meds. I was fast tracked to Jefferson Headache Center as we worked with the head of the dept. Well, after 8 years, I got hit again. My family doc had me tested for temporal arteritis (not sure of the spelling) as it mimics CH's. Also had the standard MRI. All tests were negative so he ruled in favor of the CH. Now that I'm not working at the pharma I don't have an appointment at Jefferson until Feb (very difficult to get in with the top docs). I am working with a local neuro who did the MRI.  Good luck and I hope you're pain free soon.  Prednisone has helped me.

Gidget

Title: Re: hello
Post by bejeeber on Dec 11th, 2010 at 6:25pm
Hey Mike,

Your pattern of having first had 'em 30 years ago with remissions becoming longer sounds a lot like mine (doesn't sound like late onset to me....)

6 hours sounds horrendous, but at least there are great, effective ways to beat this beast back now. It sucked 30 years ago, I know, but believe me my experience has been revolutionized by info and advice I've gained here - here's some I'd like to pass along for for starters:

High flow/non rebreather O2 as outlined in the oxygen info link to the left. This is not the pathetic, weak ineffective way of using O2 many of us tried in yesteryear.

Using imitrex injections? I'm not going to advocate for or against, as they are more controversial, but if you are, this tip has proved to be a critical game changer for many of us: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

Some folks are reporting success with natural preventatives such as Kudzu - or melatonin for night time hits - or if you want to consider really whipping out the preventative big guns, many with severe (and not so severe) cases have been successful going the "busting" route described in this good Newsweek article: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE.

I hope you'll be able to whip up a flurry of vicious counter punches and show this beast some merciless punishment for a change.  8-)


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