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New CH.com Forum › Cluster Headache Help and Support › Getting to Know Ya › New here, but not new to the pain.

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New here, but not new to the pain. (Read 513 times)

Repairman

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Louisville, KY
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New here, but not new to the pain.
Jan 14^th, 2012 at 1:37pm

I'm 31 and my CHs started when I was 19 living abroad in Mexico for school. I go through a 4-6 week cycle roughly once a year. I've been treated for migraines for the last 3 years and before that would just grin and bare it while taking copious amounts of any over the counter pain meds I could find in the house for a small piece of mind even though they couldn't touch the headache. I only just learned, within the last 3 weeks, that it is CH and not migraine. It seems most doctors know nothing about CHs. When I mentioned CH to my doctor (after learning about them on the Internet and seeing that my symptoms matched them exactly) he told me those are rare and upped my dose of Indoral (migraine preventative). Fortunately I do work for one of the top neurologists in the nation (Dr. Meckler) and he allowed me to bounce my symptoms off of him. He quickly told me that I am clustering and wrote a letter for me to show to my Doctor so I could start a correct preventative. Funny enough that even with this note from a top neurologist my Doctor still refused to prescribe O2 for the attacks, though he was willing to prescribe the steroid for the preventative. So here I am switching doctors again for misdiagnosis. I'm almost as frustrated with doctors as I am with these demon headaches. Fortunately, at the end of things I get to try my first true preventative for CH on my next bout. Crossing my fingers. The neurologist told me not to take the preventative this bout because I'm already 5 weeks into my CH cycle.

In the mean time I found out that frozen lima beans wrapped in a thin towel pressed over my eye and wrapped around the headache helps ease the pain enough that I don't have the need to beat on my head. The down side is I wake up a few hours later with a soggy bag of lima beans. I always pass out eventually with these headaches. I don't know if it's the pain or exhaustion from dealing with the pain, but I rarely can remember the headache lessening before sleep takes me. I also often have what I refer to as, "the headache hangover" for a day, or until the next one hits. It's hard to describe, but my head is just generally cloudy, and it's like I can feel all the symptoms of the CH but they are just really far away.

This post is probably a garbled mess because it's the first time I've been able to really talk about this so my mind is just flooding onto the keyboard. Anyway glad I found you and thanks for letting me vent.

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Bob Johnson

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free." -Epictetus

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Re: New here, but not new to the pain.
Reply #1 - Jan 14^th, 2012 at 2:06pm

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
BUT, Please!, don't post your messages at this location. They won't get the attention you want: use the appropriate sections which follow.
=================
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

; On-line screen to find a physician.

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

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

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.
==========
Please let us know if there are specific questions/issues on which you want info.

See PDF file, below, for latest evaluation of current therapies.
=======
Your story re. docs is all too common around here. We often get medical literature into the hands of our docs so that they can effectively treat us.

Explore the buttons, left, starting with the OUCH site, exploring the multiple internal links.

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

(96 KB | 16 )

Bob Johnson

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Guiseppi

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Re: New here, but not new to the pain.
Reply #2 - Jan 14^th, 2012 at 2:26pm

Welcome to the board repairman, sadly your story is all too common. As Bob mentioned, let us know what part of the world you hail from. Maybe someone can refer you to a neuro nearby that has a clue about treating CH.

Read this link:

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

Everything you'll ever need to know about 02. Imagine feeling an attack start, and 6-10 minutes later you're pain free. That's how well 02 can work for you. If your doc won't give you a prescription, go the welding 02 route. It's the same stuff, comes out of the same tanks they fill the medical 02 with.

Go to the meds section and read the thread "123 pain free days and I think I know why." A daily vitamin and inti inflammaroty regimen, all over the counter stuff and cheap. Many on the board are halting or at least substantially reducing their cycles with this regimen. Worth a quick read.

Energy drinks. Rock Star, Monster, Red Bull, any containing the combo of caffiene and taurine. Chug one down as fast as you can at the first sign of an attack. Will abort or reduce an attack for many.

Check out our sister site for alternative treatments outside the realm of mainstream medicine:

clusterbusters.com.

Glad you found us, sure hope we can help you.

joe

"Somebody had to say it" is usually a piss poor excuse to be mean.

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