Up until a few days ago I didn't know that cluster headaches is what they call the pain I have been feeling for almost 20 years now. The stabbing pain behind my eye that feels like someone just hammered a red hot stake into the head. I have been diagnosed with Chronic Cluster headaches, I'm not really happy knowing it has a name. I have always called it Faust.
I have always just dealt with the pain no meds no O2, the last three years I have been using breathing control methods and meditation to control the pain. it helps until about lvl 5 after that I have a very hard time focusing.
The pressure is constant behind my left eye on any given day i am usually at about lvl 3 a really good day would be anything below a lvl 2. I have been living in fear of myself because of the pain. It's has gotten so bad that I totally lose it. I get so angry because of the pain I cause damage to myself, i have scared the hell out of my wife, and i have trashed many of the things we have owned in the past. I'm feeling really bad about what I have been putting my wife through for so many years, have been experiencing deep depression for the last couple of weeks.
I'm in the middle of a cycle right now every couple of hours I get hit.

Sorry just wanted to vent a lil...
Thanks for listening.

Ed.

Oh thanks for putting this website together. It's nice to know that people do understand what I am feeling. But I hate the fact that you are experiencing it as well..

haywire wrote on Mar 13^th, 2010 at 2:09pm:


Hey Haywie,

Some of us have made great strides in getting this beast under control. I hope you'll hang around, research, ask questions, and potentially learn how to prevent/abort a whole lot of attacks.

Quote:


Read away Haywire.  We'll keep the light on for any questions when you come back. You're not wasdting anyone's time.  This site is intended for EXACTLY that.  Help, info, support and venting.   

No wasted time here Ed. Every moment spent is a gift from DJ and those who take the time to help others.

All the best

Iddy

Thanks for the quick response.

The accident catches my attention for headaches can arise from head injury, sometimes with a time delay between injury and onset. It's possible that you have the symptoms of Cluster but don't have Cluster headache as a primary problem. (That doesn't help you, I understand, but it's by way of asking....)

Have you consulted a headache specialist? Not just any neurologist, even your primary care doc, for they often lack the deep skill needed to treat complex headache disorders. Suggest you explore the move with your current doc.
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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 or ; On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or Look for "Physician Finder" search box.  Call 1-800-643-5552; 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 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.
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What is the med which your insurance won't cover?
Normally, you would be started on a preventive med along with the sumatriptan--and they are cheap and covered. But the suma aborts the immediate attack but has a short life; the preventive med is used daily and it reduces the frequency and intensity of attacks. It's not an either-or issue.

I'm uncomforable suggesting this and that for Cluster if, in fact, you have a cluster-LIKE problem. Your doc will understand this distinction and it may have some important impacts on how you need to be treated.

Get some clarity on these questions and get back. Then we can start feeding you some medical guidance which is appropriate.

The prescription i was given is to begin the preventive  measures. The nurse  had told me that the company that take care of the oxygen for them would need to set up monitor for insurance reasons, so that they can begin delivery? That's what I'm told. This is the first time I have been given a suggestions for the pain. I'm not ready to abandon my doctor just yet. He explained to me what may be happening to me and that he has worked with others who suffer with cluster headaches. He also said I need to get into counseling. The sumatriptan is called sumavel DosePro it's an needle-free delivery system.
I really don't care if it was the accident that started this or if it was just gonna happen naturally. I would like if it just stopped all together. I don't like the fact that I now have a scale so that I can tell how bad I'm really hurting. I always thought that my eye started to drop because of the scar tissue left over from the accident was irritated. I worked outdoors for many years in some harsh conditions so I believed that the reason for my runny or stuffy nose.