Anyone else feel like a newbie at an AA meeting making their first post? 

I'm Timothy, I live about a half hour outside of Pittsburgh in a city called Latrobe.  I'm not sure if I am a 100% CH sufferer, and that's why I'm here.

I had my 7th attack this week yesterday afternoon and when I had a free moment at work (graveyard shift); I did some investigating on the internet in an attempt to source my problems.

After some surfing, I came upon the wikipedia article about CH and I felt that explosion of instant recognition only someone with involvement would realize.  After reading throughout the forum the past 4 hours completely enthralled, I am almost positive that I am in the same boat as you all.  I actually feel relieved to know there are others who understand the difficult time I have and don't make snide remarks dismissing the insane pain associated with these attacks. 

I'm 24 and I've cycled twice a year for the past five years.  Once in late spring and once in early winter.  My second cycle this year is a few months early.  They generally run 3-4 weeks.  I'm a right sider and the bathroom becomes my bedroom during my attacks.  (I literally keep a large blanket and pillow in there.)  I find myself jumping in and out of the shower with water either scalding hot or freezing cold in any attempt to numb the right side of my head and neck.  If I'm not beating my head off the tile floor, I find myself rocking back and forth on my knees crying.

I've made appointments in the past at our small family practice, but I've always come home disappointed in the conclusion; that is- they're migraines or that I exhibit drug seeking behavior.  It's discouraged me through my last two cycles, so I didn't even bother going back.  I made an appointment today with the intent to get referred to a neurologist in hopes of getting diagnosed and to get scanned to make sure it' isn't serious.

What type of questions should I be asking or information should I be keen on giving when I go to the doctors today?  I absolutely don't want to be getting the run around for another 3 months.  I can make due through a cycle if it means I will be prepared for my next one at the drop of a hat.  Our family practice is a learning hospital, so I'm more than likely to see a student who won't understand exactly the degree of pain I'm in.  I think my greatest fear when going is to be misunderstood or blown off again.

Take the cluster quiz on the left, print it out and take it with you. If you're not already doing so begin a headache diary. A valuable diagnostic tool. When they start, how fast they build, how high they build..(see KIP scale on the left for a good measuring device)...how long they stay at peak how fast they go away, describe the actual pain, any physical characteristics that go along with the pain, eye twtitching, drooping, runny nose, nausea, vomiting.....the more details the better. Sounds like a pretty solid CH diagnosis to me....but always best to get the neurological work up done.

Then INSIST on oxygen. Read the oxygen info tab on the left and print out the justifications for it. No more hot and cold showers, jumping jacks at 2:00 am....yeah..we've all been there!!!! 10 minutes on the 02, pain free and back to sleep!!

Joe

Hi Timothy,
                 Welcome! Information is power, so you are definitely on the right path! Joe has given you some awesome advice, the more info you can provide the doctors with, the better in regards to what your going through and the easiest way is by keeping the diary.  Please follow up on the neurologist appointment, it's also important to see a doctor that has some knowledge as many have little experience with cluster headaches. If your diagnosis is cluster's then you have just found the best tool  (this forum) in fighting the beast, so your already one step up on it. Good luck and wishing you pain free times!
                                 Regards Shell :) :) :)                            

There are so many dozens of headache types that making a good diagnosis requires some skill and experience. Too many folks wander around for years trying to find what their problem is, the essential step to getting good care.
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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. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 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. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 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.

Hi Timothy!

Don't give up, keep struggling, marshal your facts, and go in to your appointment with a logical plan of progression of attack. 
Good for you!

Keep it up!

I went into the practice for my appointment and got my referral.  I don't know much about him but I'll at least give it a shot.  They gave me a five day prednisone prescription to see if it has any effect.  I also picked up some melatonin on my own as it was an advised OTC from a few people.  The doctor I spoke with says all the symptoms are there for      CH, but he's surprised he met someone with it due to rarity.

I always wanted to be unique, just not medically :p

hahaha!

I hear you, Brother!
If I had to win some biological lottery why couldn't it be to look like Cindy Crawford?

try to find a doc who has had experience with CH - it makes a huge difference. Also print out some of the medical info on the site about CH and O2 to give to your doc, if he/she is not up-to-date on CH.

I'd also start researching yourself where you can get O2 locally and how it is covered by your insurance (hoping that you have insurance)...

Hi Tim.  If you need a better diagnosis or want to use pharmaceuticals go to your neuro.  If you have CH they won't tell you anything that you won't already have read on this website.  Collectively people here have been to thousands of hours of doctors appointments (not me by the way).  A few docs are very smart on clusters, but many sufferers here have had to educate their doctor on effective techniques and beg for oxygen.

Option number "B" for you to consider, good sir.  Get oxygen on your own, use caffeine, melatonin, Kilowats cocktail etc., and look into the clusterbusters website.   As always, you choose how you live, but you are not required to get the mainstream medical care and take your pills. 

People have good and not-so-good success with the doctors, but overall they tend to not be that good with clusters.  You could do better on your own for next to zero cost. :)

Good luck daddy-o.

--Shaggy >:(