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        Cluster Headache Help and Support >> Cluster Headache Specific >> wrong diagnosis?
        
(Message started by: wamber on Jul 14^th, 2006, 10:18am)

Title: wrong diagnosis?
Post by wamber on Jul 14^th, 2006, 10:18am

A doctor has diagnosed me with chronic cluster headaches; however, after reading on this board and watching the video linked to a post of someone having an attack, I'm not certain what I have is cluster headaches. Don't get me wrong, my pain is severe, but I don't have the moaning, rocking or screeming urges mentioned on the site and portrayed on the video. It doesn't seem that my pain is as severe as that described by sufferers of this on this website. Think this means I may want to get another opinion?

Title: Re: wrong diagnosis?
Post by alchemy on Jul 14^th, 2006, 10:28am

Hey Wamber, take the cluster quiz it's the 4th button down on the left of the board. that will give you a pretty good idea. let us know how you make out
jim

Title: Re: wrong diagnosis?
Post by E-Double on Jul 14^th, 2006, 10:30am

I am sorry that you are in pain at all.

Can you describe what you do have?

There are a few different HA types that may present similar to Clusters but differ in responsiveness to medication, are different in duration and intensity.

Many of us here have gone through misdiagnosis before so maybe we can guide you a little.

Though there may be doctors on the board with CH, for the most part we are not and can not give medical advice just give suggestions based upon our experience.

In addition, some who have clusters rarely experience that point of "suicide HA" and though severe do not reach that KIP 10 as we call it.
Some also have their very first cycles be scary but moderate in comparison to what they experience in the future.

So it is possible.

Tell us what you have experienced

Title: Re: wrong diagnosis?
Post by wamber on Jul 14^th, 2006, 10:43am

Took the quiz. 1-8 were all no and 5 of the questions for 9-16 were yes. So, according to that it's still a maybe.

I'm actually able to function while having the pain. It's not easy, but I can function. I've had this for so long and so often that I think I convinced myself that I HAVE to deal with it or I'd not be able to have a life.

The pain is generally in and around my right eye and sometimes feels like it's in my right sinus area. I also usually get pain in the neck, though I don't realize it until the eye area pain lessens. The right side of my face feels like it swells, though sometimes I can't see a difference in the mirror. My eye sometimes waters and the right nostril may run a bit. It normally starts at night or in the morning. I've never found any medication that helps. Occasionally, I'll get out of bed in the morning and get a stabbing pain on the top right side of my head that will start the whole thing off. The pain waxes and wanes throughout the day, sometimes appears to go away (though I suspect it just diminishes to the point that it's not bothering me near as much) and then re-appears. This will last for a week or so and then be gone for a week or more.

Quite some time ago, a dr. told me they were migraines. We've tried migraine meds, Lortab, Ultram, Tylox, several triptans, Benedryl, OTC medications... all to no avail. Most recently, another dr. told me he thinks they're cluster headaches and wants to try oxygen. After reading this site though, I'm not sure I have cluster headaches. I suppose it would be worth a shot to try the oxygen anyway.

Title: Re: wrong diagnosis?
Post by E-Double on Jul 14^th, 2006, 10:54am

you say it waxes and wanes all day???

do you have seperate attacks which peak and then disappear?

Some have pain throughout the day which just lingers or creeps in the "back"

Have you ever tried indomethacin?

I ask this because SEVERAL head ache types are responsive to it almost immediately and many Dr.s will use it to rule out CH because it tends not to respond.

What you describe sounds to me (though not a dr.) like Hemicrania Continua:

http://www.ninds.nih.gov/disorders/hemicrania_continua/hemicrania_continua.htm#What_is

Good luck and wishing you pain free times.

Eric

Title: Re: wrong diagnosis?
Post by wamber on Jul 14^th, 2006, 11:21am

I have tried Indomethacin before with no relief, but you're right, my symptoms do sound like those described on that link. Maybe the lack of successful relief with Indomethacin lead the dr. to the diagnosis of chronic clusters? Just not sure.

Title: Re: wrong diagnosis?
Post by E-Double on Jul 14^th, 2006, 11:24am

Where do you live???

Is there a specific headache clinic near you?

even the greatest of docs and neuros are not necessarily trained in HA.

Good luck

Title: Re: wrong diagnosis?
Post by wamber on Jul 14^th, 2006, 12:05pm

Here's some more description... I'm having a bout now. Got it last night after laying down for about 20 minutes. Right now, according to the kip scale linked at the left, it's about a 7. It goes down to about a 4 and then will go back up. I'm still able to function, as I can type this. I think many people would be going nuts right now, but I have a high pain threshold according to my drs. I know that it will go down and back up over the course of the day. I'm not sure how long it will last. My last bout lasted about a week and a half to two weeks of increasing and decreasing before the pain went away. That was about three weeks ago.

I may need to consult another neurologist, just to confirm the diagnosis. If there is something out there that might help -- that I haven't tried yet -- I definately want to give it a go.