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ShawnP

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Self medication breakthrough
Oct 8^th, 2015 at 2:58pm

Good day. Having had CH for 15 years now, I have tried virtually all forms of medication available. Some have had fair success, but nothing (besides ER treatments) has worked fast enough or been succesful in completely removing the pain.
Until, out of utter desperation, 2 days ago that is.
What I am about to share is quite unorthodox, but having experienced a CH, I am sure you will understand the extremes that we sufferers are willing to go to.
So, in the midst of my last episode, I emptied a Myprodol (codeine/ibuprofen/paracetamol non-prescription anti-inflammatory) and snorted about only 15% of the powder from this single capsule into the nostril on the same side of the pain. It burnt/hurt a bit and I coughed and choked for a while, but (big but) in about 15 seconds I was pain free and reading a bedtime story to my son not long thereafter. Also, as a bonus I have not had an episode since.
Some casual research has shown that this is condemed, as it will damage your sinuses, but I am personally willing to take that risk. In all I believe this to be better for my system than swallowing countless tablets on a daily basis, and far cheaper than (ineffectual) Oxy therapy or vists to the Neuro and ER.
I share this only on the chance that it might help a fellow CH sufferer. I aslo ask that before trying, you possibly consider investigating a little more thoroughly than I have.
Otherwise, I wish you well and all the best in beating this affliction.

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Bob Johnson

CH.com Alumnus

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"Only the educated are
free." -Epictetus

Posts: 5965
Kennett Square, PA (USA)
Gender: male

Re: Self medication breakthrough
Reply #1 - Oct 8^th, 2015 at 3:39pm

I suspect you will get an earful along these lines: Pain meds don't work for Cluster. So, if you have tried all the regular meds used for Cluster and none has worked, this strongly suggests that you don't have Cluster.

There is a long list of disorders which mimic Cluster but are not headache disorders.

Link to: cluster-LIKE headache:

IN: "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"

==========
But the primary question: have you been diagnosed by a doc with experience with complex headache disorders?

The only resolution to your dilemma is to locate a headache specialist.
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

or

; On-line screen to find a physician.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

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

or

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.
=====================================================================
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.

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Bob Johnson

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Potter

Ex Member

Re: Self medication breakthrough
Reply #2 - Oct 8^th, 2015 at 4:44pm

ShawnP wrote on Oct 8^th, 2015 at 2:58pm:

Good day. Having had CH for 15 years now, I have tried virtually all forms of medication available. Some have had fair success, but nothing (besides ER treatments) has worked fast enough or been succesful in completely removing the pain.
Until, out of utter desperation, 2 days ago that is.
What I am about to share is quite unorthodox, but having experienced a CH, I am sure you will understand the extremes that we sufferers are willing to go to.
So, in the midst of my last episode, I emptied a Myprodol (codeine/ibuprofen/paracetamol non-prescription anti-inflammatory) and snorted about only 15% of the powder from this single capsule into the nostril on the same side of the pain. It burnt/hurt a bit and I coughed and choked for a while, but (big but) in about 15 seconds I was pain free and reading a bedtime story to my son not long thereafter. Also, as a bonus I have not had an episode since.
Some casual research has shown that this is condemed, as it will damage your sinuses, but I am personally willing to take that risk. In all I believe this to be better for my system than swallowing countless tablets on a daily basis, and far cheaper than (ineffectual) Oxy therapy or vists to the Neuro and ER.
I share this only on the chance that it might help a fellow CH sufferer. I aslo ask that before trying, you possibly consider investigating a little more thoroughly than I have.
Otherwise, I wish you well and all the best in beating this affliction.

I have no words.

Potter

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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: Self medication breakthrough Reply #3 - Oct 8^th, 2015 at 6:17pm I have my doubts they were CH's in the first place. Hoppy.
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jon019 CH.com Alumnus Offline "Ya gotta believe!" Posts: 1656 USA Gender:	Re: Self medication breakthrough Reply #4 - Oct 8^th, 2015 at 6:57pm I have one: NO!!!!!!!!!!!!
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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Self medication breakthrough Reply #5 - Oct 9^th, 2015 at 3:13pm Bob Johnson, as always, is the quiet voice of wisdom here! There are potentially fatal conditions which in many ways mimic some CH traits. It would be wise to follow his advice and get your condition checked more thoroughly. Wishing you peace and pain free days ahead. Joe
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