I think I have recently been diagnosed with cluster headaches.  I may still be in the lab rat stage of diagnosis, however I now have an unfilled Rx for cymbalta which is a drug you take every day for the rest of your life so, I am  pretty sure my primary has come to a diagnosis.  

Also, I sort of responded to steroids, but I have had a constant headache for about two weeks, now and I am about at my wits end; I might loose my job.  They are not happy about the number of times I have called out sick these last two years.

This drug Cymbalta scares me.  If it doesn't work, getting off of it might be very, very hard.  It is very expensive, and while it seems to be used for other ailments I think I might have (generalized anxiety disorder) I am feeling really leary about starting this.  

Honestly, I don't know if I even have cluster headaches, I could have paroxysmal hemicrania.  I have headaches all the time.  Sometimes they are very very bad, sometimes they are headaches that make me want to take a drill to my head and are so excruciating...  but I don't do the dance.  So I have no idea what's going on and I'm angry because someone told me to take this life changing drug every day for the rest of my life, without even talking to me about it.

This is so confusing.
But I think your website really helps, I didn't even know about paroxysmal hermicrania until I got here.  

So thanks.  I really hope this isn't what I have.

Wow! Sorry you're in the place you are now, a little scary with all the "not knowing." Take the cluster headache quiz on the left. That'll give you a better idea of what we look for in CH. If you are not already doing so, start keeping a DETAILED  headache diary. When they start, how fast they build, how high they build, (The Kip Scale on the left in the tabs is a useful tool for measuring pain), how long they stay at peak and how fast they fade. Try to identify food and life style triggers. The more information you can record, the better your odds of a competent diagnosis. The following is a link I stole from one of Bob's posts...forgive me Bob....but it's a great post on how o find a headache specialist. You NEED a headache specialist.:

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.  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.

I am NOT a doctor, but it sounds like you may have a combination of headache types, all the more critical you get to a headache specialist to get you diagnosed. Wishing you peace and some pain free time soon.

Joe

Thanks.  Problem is, I live in PA, hours from Philadelphia, so all of the good headache doctors in my state are in Philadelphia.
Maybe I will move there.
It would be really great if the culture of the health care profession in the US didn't encourage Physicians to throw drugs at every problem that walks through the door.  I agree there is a serious attitude problem, not so much on the part of my doctor; he called it cluster from the start, but his supporting staff?  There is a nurse named Judy I would curse with this $hit...
I did try your quizzes; that's what makes me think there is an alternate diagnosis here.   I found them very helpful.  Thanks.  

Hang in there, you're in the toughest part of the fight right now, getting the accurate diagnosis. Keeping you in our thoughts.

Joe

Hi Excogitate and Welcome.

I am sorry to hear you are having such a hard time.  I also live in Pa and have been suffering with CH for over 9 years.  My Neuro is in East Stroudsburg.  If you live any where near there I will give you his name so you can make an appointment with him.  He's been pretty good to me with meds etc.  

I currently live in Wilkes-Barre and still travel down there to see him, because
1 I trust him and 2 its hard to find a good neuro that is willing to work with you.  

Let me know via PM or here if you choose and if you live within traveling distance of E. Stroudsburg and I'll give you his name and number.

O.K., so Joe stole my thunder--for which he is forgiven! <bg> But to the business at hand....

Without a solid diagnosis of the type of headache you have any talk about treatments is misleading and a waste of time.

Your admitted anxiety will continue to be a barrier until you gain some control over it. Cymbalta is worth a try and there is no life long commitment to using it for a few weeks to see if it's effective for you. If not, there are other options but without some moderation of the anxiety it will be more difficult for you to work on the headache issue, i.e., anxiety increases the subjective sensitivity to pain making effective treatment more troublesome.

The immediate question is whether you present doc is skilled in diagnosis/treatment of headache. Most docs are not; even neurologists often lack training/experience, hence, Joe's suggestion that you find a good doc before anything can start to fall in place. We have too much experience in this group of folks wandering around for years before finding a good doc: this is the experience we are offering you today.

Welcome to the board,

Have a quick gander at the cluster quiz on the left hand panel. This quiz in conjunction with the kip scale will give you a better understanding of the symptoms and pain associated with CH's.



Lefty..!

I wrote this really long awesome post full of venting and thanks and it was quite chardic.  then I accidentally deleted it.  

So here it is in shorthand.  Seriously.
I found this really great article that might help someone else like me who could land here.  It is called Depression and Headaches.  It is on the National Headache Foundation website.
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

The article really spoke to me even though my health care providers suck and no one (save for a crafty and pharmacist who is much better at insinuating facts than nurse Judy) has successfully, and politely let me know what the heck is going on.  I am seriously thinking of moving to Canada because I think I might get better care there.

I understand telling patients what the are being treated for before a diagnosis could result in nasty legal implications, but there is some serenity in knowing something.  Anything.

I used the locality search on this site and found a local someone who gave me the name of her doctor, not a specialist, but we live in a strange little town.  So, I'm in the process of re-connecting with some long lost neurologist friends.  Hopefully, useful recommendations for specialists will follow.  I remain suspicious that some of these headaches I experience are indeed of the cluster variety.  I believe this because of the obvious physical things like the cyst on my neck and the drooping eyelid during an attack, not to exclude the excruciating pain, which I have experienced for years.  I can also identify triggers: Alcohol and using Nuva Ring.

Anyway, I can't express how helpful this site is, every comment was extremely useful and helpful even though I may not have cluster headaches, the comments and the information available here really has been VERY been helpful in digesting all of this at the very least.  Thanks for being awesome.