Cluster Headaches don't normally linger the way you are
describing. maybe take the cluster quiz, the link is to your
left on this page, and see how you go.

Hoppy.

Hi mjones
Sometimes, if not treated, my attacks last a couple of hours at a time, but I once had one that went on for something like 14 or 16 hours - can't remember exactly. It is unusual, but the one constant thing among us is that no two of us are exactly the same.

It's vital that you see a headache specialist because there are many other headache types which are very similar, so it's difficult to diagnose. Many of us have suffered for years (5 in my case) without a diagnosis, while the doctors faff around with pain meds etc, which just will not work.

If it does turn out to be CH, then sumatriptan is the best abortive drug. The pills are too slow to be of much good, but the auto injections are fantastic and will work in about 5 minutes.
Also Oxygen is the safest abortive because it's drug free and you can use it as often as you need to. I use the oxygen at home and save the injections for when I'm out. But, it must be used correctly for it to work. You need a flow rate of at least 15 litres per minute (more is better) and a non rebreather mask. If you get either of those two things wrong it will not be effective.

Check out these boards for info on the vitamin D3 regime which has had brilliant results for many of us.
Hope this helps
Maz.

Glad that you found us! First, it's very unwise to try and diagnose and treat yourself. There are, for example, many serious disorders which mimic Cluster but which are not headache disorders. 

We recommend, if at all possible, that you consult a headache specialist for a diagnostic work-up. (General neurologists seldom have the depth of training/experiece with headaches unless you are willing to question them closely about their experience.)

We are not in a position to make this judgment and so urge you to avoid starting any treatments without a good diagnosis.
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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.

Thank you all for the information.  I will try to find a headache specialist.  I have never had my Vitamin D3 checked but sounds like something I need to do.  If I don't have CH then I surely need to find out what I do have.  And if it is CH, hopefully some of the methods on this site will help me.  Thank you for being available to me for support.

Hello,
Your pattern seems unusual, but then I have a very irregular pattern, so who knows. Also, in the dozen or so years I've lived with this I have never has a droopy eyelid either.
The other guys are right. Get to a headache specialist Asap. I wasted about 6 years before I got a diagnosis and was referred to a specialist. Only happened because my regular Doctor was on holidays and a locum was on duty that day. He took about 3 minutes of listening to me before he said CH.
2 days later I was in hospital being scanned and my life has improved dramatically since. Still in the thick of it, but I now know what it is and what to do.
Get to a headache specialist soon. Don't waste the years I did.
Good luck,
Peter.

Hi,
Be cautious about on-line reviews, they are very subjective and you have no idea what expectations the writer had going in.
good luck,
Peter.

On the left of your screen is a tab called "where we live". Have a look there and you will find 26 people in Austin.  Also, Bob has given you some suggestions which will help.
Maz.

mjones wrote on Jan 16^th, 2015 at 2:30pm:


Hi mjones,
Sorry to read you are suffering and in pain without the professional help of a doctor who truly knows how to effectively diagnose and treat Cluster Headache sufferers.

You asked for a referral to a good doctor in the Austin, TX area.  It just so happens that a little over one year ago, I compiled the most comprehensive list of all doctors familiar with Cluster Headaches throughout the USA and Canada.

The doctors listed below were all recommended by other CH sufferers residing in Texas.

Austin
Dr. Robert M. Cain
Associated Neurological Specialties

Dr. Craig R. Dubois
CHARM-Center for Healing and Regenerative Medicine

West Lake Hills
Dr. Rajat Gupta
Headache & Pain Center

Dr. Marci A. Roy
Little River Health Care Neurology

This completes my list of Austin area doctors who have all been referred/recommended from fellow Cluster Headache sufferers.

Wishing you and every CH'er in the Austin area good luck finding a doctor you are pleased with! 

-Gregg in Las Vegas

Hello, wanted to update you all on what's happening with me.  When I first joined this forum, I was dealing with some health problems with my son, had just gotten over bronchitis myself, and was getting ready to head off on vacation to New York.  So I had no opportunity to find a neurologist at that time.  I started myself on 5000 units Vitamin D3, fish oil and the Costco Multivitamin to see if I could get any relief until I could get back from my trip and find a doctor.  I wasn't trying to diagnose myself, just trying to get some relief or start the process of relief until I could see a Dr.

I thought it was helping because I didn't have a headache for about six weeks, when I had been having clusters of headaches every two weeks or so.  But then I got slammed again last week. 

So I called one of the doctors on the list that Gregg in Las Vegas provided, Dr. Edward Fox, since he is closest to my home.  The receptionist told me Dr. Fox doesn't treat headaches (he specializes in MS) but that Dr. Craig Couch, in the same practice, is who they refer all headache patients to.  So I made an appointment in mid-March (the soonest opening they had for new patient).  Interestingly, Dr. Couch is my father's neurologist, so I have met him several times and I like him.  So I feel good about that. 

I will keep you posted on what happens at my appointment.   Gregg, you may wish to remove Dr. Fox from your Austin list and I'll update you about Dr. Couch.  I so appreciate your list though because it pointed me in the right direction. 

--Mariann

I will Gregg.  I hope to be of help to others as you all have been to me.

Gregg,

I just recently heard about a new headache clinic opening up in Round Rock, Texas.  It's a Scott & White Clinic.  I thought you might want to add it to your Austin-area list: 

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

It's nice to know that soon there will be another resource close by where I live that I can access if I need it.

--Mariann

mjones wrote on Mar 12^th, 2015 at 7:53pm:



Hi Mariann,
I do not add doctors to my list unless they are recommended by those suffering from CH's.

Just because a doctor claims to be a headache specialist or just because somebody went to school and studied neurology does not qualify them to effectively treat somebody suffering from CH's. At least not qualified on any of my recommended doctor lists, as I am very select. My lists are strictly based on positive feedback/recommendations from fellow CH'ers.  Thanks for the thought though! 

Congratulations on not having CH's, you should feel very relieved you will not have to endure the living nightmare we here on this site all share in unfortunate common.

An MRI is a great tool to start the diagnosis process. Best wishes

-Gregg in Las Vegas