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New member going through first cycle (Read 900 times)
bschaffer13
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New member going through first cycle
May 13th, 2015 at 10:53am
 
Hey everyone I'm Brandon from Colorado.

My dad has been diagnosed with cluster headaches for over a decade now and it was always miserable to watch him go through that. Now it looks like I was fortunate enough to inherit those genes.  At least I kind of new what to expect and what to look up.

For the last 2 weeks now I've been waking up at 11PM between everyday to every other day to the worst pain I have ever experienced. I guess I'm lucky it's not happening multiple times a day like it does to some.  When it happens I just can not stay still.  Especially my arms they just want to flail all over the place.

I went to a Dr. last week and she diagnosed me with migraines and gave me Imitrex pills to take when I feel one of these coming on.  However I never feel them coming on they just wake me up full blast and then fade away just as quickly 30 to 60 minutes later.  I suppose I should try going to another Dr. but I just don't feel like there's anything they or anyone can do.

I'm getting married in 2 weeks and then going to Hawaii but now instead of looking forward to that I'm dreading what will happen if I have an attack in a B&B.

Sorry for such a long post but it feels a lot better to have typed all that out.
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Bob Johnson
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Kennett Square, PA (USA)
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Re: New member going through first cycle
Reply #1 - May 13th, 2015 at 1:18pm
 
Let's get your head on straight first! You're voicing hopelessness before you even know what you are dealing with and you are much too young to start on that road.

Your Dad: If he started his attacks in middle-age (vs. teens or 20s) he need to see a good HEADACHE specialist for a good diagnostic work-up. Mid-life onset can mean a disorder more serious than Cluster and so need to sort thru that issue first.

Assumptions about whether or not you have Cluster closes the door to taking effective action. Since you'll be moving, I'd suggest working with the doc to bridge the gap until you moved settled--then find a good HEADACHE specialist, not a neurologist, GP, etc. unless they can prove they have good education/experience around complex headache disorders. Clusster is not a simple disorder and you will need skill care for many years.

It's not clear whether the Dx of migraine is correct vs. Cluster but whether you can get that question resolved before you move is ???

Pring the PDF file, below, and share with you present doc and with any doc you see in the future. Impotant because the treatment of cluster vs. migraine is rather different.
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After you move:

LOCATING HEADACHE SPECIALIST

1. 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.

2.  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.

3. 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.

4. 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.

5. 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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WHY A HEADACHE SPECIALIST IS RECOMMENDED


Headache. 2012 Jan;52(1):99-113.
Cluster headache in the United States of America: demographics, clinical characteristics, triggers, suicidality, and personal burden.
Rozen TD, Fishman RS.

THERE REMAINS A SIGNIFICANT DIAGNOSTIC DELAY FOR CLUSTER HEADACHE PATIENTS ON AVERAGE 5+ YEARS WITH ONLY 21% RECEIVING A CORRECT DIAGNOSIS AT TIME OF INITIAL PRESENTATION.
================================

Ask her to let you try using this med for 2-3 attacks. IF you get fast relief, this would suggest Cluster. (I have had wonderful success with it; cheap, fast acting.)
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Headache 2001 Sep;41(8):813-6 

Olanzapine as an Abortive Agent for Cluster Headache.


Rozen TD.
Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and TWO PATIENTS BECAME HEADACHE-FREE AFTER TAKING THE DRUG. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE.

PMID 11576207 PubMed

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Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
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If this one works, the advantages are: inexpensive; easy to carry when you in the mess of wedding, moving, etc. At this stage of you rife, using something which is fast, convenient, has much to recommend it.

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Bob Johnson
 
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Hoppy
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Re: New member going through first cycle
Reply #2 - May 13th, 2015 at 6:43pm
 
Hi Brandon,
Imitrex pills take to long too work, ask your Doctor for
the injectors, they will abort a CH in 5mins.

Cheers Hoppy.
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