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        Cluster Headache Help and Support >> Cluster Headache Specific >> Can shadows be misdiagnosed?
        
(Message started by: duckie on Jan 30^th, 2007, 3:15am)

Title: Can shadows be misdiagnosed?
Post by duckie on Jan 30^th, 2007, 3:15am

Hey there,

On reading some info on shadows is it possible for a Neuro to misdiagnose shadows for another type of headache. I've been diagnosed previously a few years ago with episodic CH with tension HA as well but now I am not so sure.

The HA is always on one side and can flare up on the same side later in the day. I've had a HA since 2002 when the CH cycle stopped (thank goodness). I've occassionally had a few HAs which feel like CHs in pain level and typical symptoms over the years but it hasn't developed into any discernable cycle (I need to start tracking them). Help!! Is this a common problem or is the Neuro back then right?

I'm also seeing a new Neuro as the frequency of the CHs is increasing but he didn't say anything specifically about shadows...

Just trying to understand the impossible...

Duckie

Title: Re: Can shadows be misdiagnosed?
Post by burnt-toast on Jan 30^th, 2007, 8:00am

CH sufferers' experience wide variations in cycles -specific/recognizeable to each individual. Some cycles appear in more regular/identifiable form while others can be irregular/difficult to identify until aggressively tracked via a journal. Associating a "cycle" with CH is not as important as diagnosing the condition based on the symptoms of the headach and how they manifest themselves. Read "cluster traits" and take the "cluster quiz" found on the left to establish a baseline for your discussions with your doctor(s).

In my experinece shadows are not headaches. Shadows manifest themselves as very low level nerve discomfort in head/facial regions typically associated with CH attacks. The key word is discomfort - as if an attack was about to begin but never does - they do not evolve to deliver even low level headache pain.

Using your following quote...

"I've had a HA since 2002 when the CH cycle stopped (thank goodness)." If by this you meant constant headache these symptoms would appear to be inconsistent with CH and you should explore other possibilities with your neuro.

You haven't provide a lot of information but even if you had no one here can diagnose your headache condition. Working closely with a knowledgeable neuro is the best option for obtaining an accurate diagnosis.

Best wishes,

Tom

Title: Re: Can shadows be misdiagnosed?
Post by lionsound on Jan 30^th, 2007, 11:13am

One person's shadow is another one's migraine ;;D

...sort of funny, but entirely true because different people have different ways of describing what goes on in their noggin. What one person calls a shadow, another may not. I get multiple headache types and I see a headache specialist.

it's best to get you to a neurologist that can help you figure out what's going on besides your CH. And like you suggested, it's a good idea to start keeping a headache journal(date,time, symptoms,HA duration,meds) to bring to your doctor to help sort things out.

let us kow what happens, okay?
PF's,
lionsound

Title: Re: Can shadows be misdiagnosed?
Post by thomas on Jan 30^th, 2007, 11:33am

on 01/30/07 at 11:13:31, lionsound wrote:

That's why I wish people wouldn't be so quick to play the "you don't have clusters" card here.

Title: Re: Can shadows be misdiagnosed?
Post by duckie on Jan 30^th, 2007, 4:31pm

Thanks guys, I don't really know how to explain them but I will get onto the HA diary and take it to my Neuro the next time I see him. Like I said to my Neuro I was so glad that the CH's had stopped coming everyday that I wasn't really concerned about the everyday stuff as it's nothing in comparison!! Just reading some of the old posts here made me think it could be shadows but maybe i'm also a tense head (hahahaa).

Still learning more and started seeing a Neuro again who supposedly knows more about CH than the last one, only time will tell.... (if anyone's in Sydney and can recommend a good one, let me know!!) Information and knowledge can only help.

PF wishes to all

Duckie

Title: Re: Can shadows be misdiagnosed?
Post by burnt-toast on Jan 30^th, 2007, 5:48pm

Hang in there duckie,

You're doing the right thing by keeping a headache journal. It will go a long way in working with your doctors and hopefully it helps you get on your way to some relief. Its amazing how much I wasn't remembering to communicate until I started keeping one.

Good luck and keep us posted.

Best wishes,

Tom

Title: Re: Can shadows be misdiagnosed?
Post by starlight on Jan 30^th, 2007, 10:14pm

Hi, I don't know if this helps, but my ex-boyfriend kept hearing me say during a cycle, yeah I've been shadowing all morning/afternoon (whichever). He did not understand what a shadow was (how could he?). So I thought how do I describe it b.c. it is a unique feeling. I said let me tell you--a "shadow" feels like there is a piece of thread going kind of diagonally through one side of my head that someone has decided to pull tighter." He said, ah, I can totally picture that. So I don't know if that helps, but that is what it feels like. It ranges from uncomfortable to very uncomfortable depending on how "tight" the thread is being pulled. Star

Title: Re: Can shadows be misdiagnosed?
Post by duckie on Jan 31^st, 2007, 1:32am

It does, I've sometimes described them at the most uncomfortable as shudders. Using your description a shudder for me would be when the string is being pulled really tight. At least your description provides a mental picture for me and others I try to explain it to ;;D

Ahh the joys of the english language, so many ways to try to describe things :D

Duckie

Title: Re: Can shadows be misdiagnosed?
Post by thomas on Jan 31^st, 2007, 8:56am

We all have different definitions of what constitutes a shadow, as well. The terminology here isn't exactly 100% latin/medical world friendly.

Title: Re: Can shadows be misdiagnosed?
Post by JohnM on Feb 1^st, 2007, 4:56am

Shadows are are very hard to really clinically define.

Even for me to describe mine is so difficult as they are not always consistent:

Sometimes after a CH I get a totally clear head, other times I get some residual pressure in the CH pain area.

Sometimes this residual pressure can be slightly painful up to a "normal headache level" and can last all day or for several days.

Sometimes it reaches migraine levels but it does not have quite the same "quality" of head banging pain of a KIP 10

Sometimes it is just a nagging ebb and flowing sensation that a CH is on the way but it does not come for many hours.

Maybe one of our more skilled writers here can try and define it so that we have a common understanding of what we mean by shadows?

John

Title: Re: Can shadows be misdiagnosed?
Post by thomas on Feb 1^st, 2007, 9:10am

on 02/01/07 at 04:56:51, JohnM wrote:

Exactly and therefore a non-regular here can have the same type of head pain and come on here and say "I've had a HA for 2 weeks now." Then right away they get the "You don't have clusters, now bugger off."

Title: Re: Can shadows be misdiagnosed?
Post by georgej on Feb 1^st, 2007, 9:45am

on 02/01/07 at 04:56:51, JohnM wrote:

Good point, John.

I'm guilty of some sloppiness in this area. Like many others here, I often get residual pain from a CH, particularly after a bad one--more like a powerful dull ache that lacks the piercing quality of an actual CH. As if I've been bruised or beaten up on the inside. It can last for hours before gradually fading away. I've called these "shadows" at various times, but they're really quite distinct from a building CH that ramps to, say, a 3 or 4, but never goes any farther--which I believe properly describes a "shadow". There should really be a separate term for residual pain.

Good observation as well, Thomas.

Best,

George

Title: Re: Can shadows be misdiagnosed?
Post by burnt-toast on Feb 3^rd, 2007, 9:45am

on 02/01/07 at 09:10:10, thomas wrote:

Thomas,

From what I read, many of us have experienced the difficulties finding Neuro's. that fully understand/differentiate between various headache conditions and take time to treat them as specific disorders. Most responses highlight the importance of being prepared with as much information as possible when seeking a professonal/accurate diagnosis.

I read attempts to share/explain experiences and pass along advice based on what folks know. I read responses that correctly say that receiving an accurate diagnosis from the board is not possible while re-enforcing the need to obtain an accurate diagnosis by working closely with knowledgeble professionals.

I don't get to read every thread but I don't see "You don't have clusters, now bugger off" as the most common response. For the most part advice/shared experiences on the board appear targeted to helping others better understand their disorder(s) and how to obtain appropriate diagnosis/treatment.

Try not reading between lines to find negativity where it doesn't exist.

Best wishes,

Tom

Title: Re: Can shadows be misdiagnosed?
Post by duckie on Feb 10^th, 2007, 2:29am

Hey everyone, thanks for all the feedback. I've seen another Neuro yesterday (referred by one of the great Aussies here) and he confirmed CH mixed with some other/s. Going to work on the CH then figure out later what else is going on in this head of mine.

Lii