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        Cluster Headache Help and Support >> Cluster Headache Specific >> is this the "shadow"?
        
(Message started by: jenright80 on Mar 13^th, 2007, 9:36pm)

Title: is this the "shadow"?
Post by jenright80 on Mar 13^th, 2007, 9:36pm

I've got a headache. kinda. it's not really painful. just had some coffee in case IT is coming. it's just annoying. like being sleepdeprived. in my forehead or maybe all over. i don't know i can't really pinpoint it. there's paiin but not much. it just feels like i have a headache. is this the shadow? does it come too after and between episodes? maybe that's why i thought i had a continuous headache all summer and the dr's think it's migraine. dunno just exploring possibilities out loud. any info on experience with the shadow would be appreciated greatly. thanks.

Title: Re: is this the "shadow"?
Post by E-Double on Mar 13^th, 2007, 9:49pm

shadow: kinda lurking and feeling like the beast is ready to pounce.

could be

Title: Re: is this the "shadow"?
Post by chrisw on Mar 13^th, 2007, 10:17pm

for me, a shadow feels like what a ch feels like in its very beginning stage. just waiting there for you to let down your guard. I only feel a shadow on my cluster side, almost like there is some kind of damage done in there due to what it has been through in the past. It starts as a tingling, with slight pain, with a few shots of pain thrown in, but clusterheads know its only a shadow because it doesnt get worse in 5 min or so. If it isnt only on your side where you get hit, it probably isnt a shadow.

chrisw

Title: Re: is this the "shadow"?
Post by Gator on Mar 13^th, 2007, 10:45pm

What I describe as a shadow is that feeling you get just before an attack starts ramping up. Like the beast is lurking getting ready to pounce. A low grade pain or pressure in and around my eye - always on my CH side. Sometimes I get them just before a hit, sometimes this hangs on after one. Sometimes it just comes and hangs around for a while and leaves.

A 24/7 headache in the forehead or all over your head for months doesn't sound like a shadow and sounds nothing like CH. There's a lot of things it could be. The best thing to do is to record your past history of headache and to keep a headache diary for all future headaches and take this to a headache specialist. A doc will be able to ask the right questions and perform the right tests to make sure it is nothing sinister.

Title: Re: is this the "shadow"?
Post by jenright80 on Mar 14^th, 2007, 2:20am

A 24/7 headache in the forehead or all over your head for months doesn't sound like a shadow and sounds nothing like CH. There's a lot of things it could be. The best thing to do is to record your past history of headache and to keep a headache diary for all future headaches and take this to a headache specialist. A doc will be able to ask the right questions and perform the right tests to make sure it is nothing sinister.

sorry i guess i didn't state this clearly enough but after my first post, i figured it'd be better to keep these short and to the point. i'll try again. what happened that first summer and every summer since, this'll be 4 years now, is when it begins to get hot out i get a headache usually 3-4 times a week starting at 2:00 it gets bad, then not so bad then really really bad at around 10- 1030. When it gets bad it goes into my eyes. eyeballs, that is, not behind them not above them. In them. Always one side is much worse. The first summer was memorably the right. And it does feel exactly like my eyeballs are going to explode. So you can see why I'm curious about the clusters. Timing- like clockwork, the seasonal thing too, and of course the specific pain description. My eye does usually droop a bit and i kinda look stoned. By july these headaches are every day and yes the first and second summers were all the time. But better at some times than others. sometimes it would be more of a dull ache- just like it was coming. other times i would feel like i had a headache but not really. Hard to pinpoint the pain exactly. Then of course at night it got excruciating.
My question is this- how long does the shadow last before and after? can it last into the next attack? of course the possibility exists that i could have more than one type of headache as well.
I have had all the tests done several times over the years. I have been to headache clinics. They diagnose migraine because they ask the right questions. "do you have nausea? do you have photophobia? Where does it hurt?" I tell them everytime "yes", "yes" and"in my eyes". But when i try to tell them about the seasonality and the timing and the pain. They don't listen. they hear, "around her eyes, female, migraine, migraine, migraine." I don't know if it's because that's what they know of or what but anything else going on doesn't matter. they ask migraine questions. they get some migraine answers. they don't ask me if i beat my head on the wall. they don't believe me when i describe the pain, and they are certainly confused about the seasonality thing. sorry. i'm just frustrated. even if it's not CH, i'm thinking that it's closer to a CH variant than a migraine varient. Guess i gotta continue my research online and figure out the physiological mechanisms. thanks.

Title: Re: is this the "shadow"?
Post by LeLimey on Mar 14^th, 2007, 2:58am

Jen shadows can last before and after, CH is bloody horrible. Sometimes OTC painkillers will help shift shadows although they won't touch the sides of a real hit.

I've just been typing a message for another sufferer about another HA condition so I'm going to copy it here for you too in case you miss it. It could be worth a try for you too, when you're in pain you've got nothing to lose sometimes honeybun!

CH belongs to a group of headaches called TAC's -
Trigeminal Autonomic Cephalagias. The pain and autonomic symptoms are pretty similar for all of these but what changes is both the length of time attacks last and also what meds help.

Now I'm no doctor but what you have described does sound similar to Hemicrania Continua which is basically an all day headache with "spikes" which seem more like typical CH.

Its worth discussing with your doctor when you see him as there is a very effective med for this condition called Indometacin (or Indomethacin in the UK) which will kill virtually all the pain. Its very fast acting too and should kick in within a week of commencing it. One word of caution with it though if it turns out to be something you try, its very rough on the stomach so you will need something from the doctor toprotect your stomach as I'm not sure OTC meds would protect it sufficiently.

Indo is a very, very cheap drug and to be honest, I think its worth a try for alot of people as you know within a week to ten days if it's going to help or not AND you can still use triptans and O2 to abort any hits that occur too. The potential regaining of your life is well worth the trial in my opinion!

I'm not saying for one minute that you do not have CH - just that the TAC's are similar and its worth investigating all your options, I would love you to find a really effective med.

I hope this helps
Helen

Title: Re: is this the "shadow"?
Post by Gator on Mar 14^th, 2007, 4:29am

Jennifer, no one here said you don't have CH. What I said was based on the description in the first post, your symptoms do not sound like a shadow or CH. There is a very large difference between the descriptions in your first post of this thread and this last one.

In the first post, the headache was presented as generally all over, moderately annoying and ever present. By that description, the answer you received was probably as close to correct as a non-doctor could give you. It sounds nothing like a cluster headache or a CH "shadow" as I understand the definition of the term shadow.

To answer your question, "How long does a shadow last?" Speaking from personal experience, some last for minutes others for hours and once in a while it seems like I shadow all day long in between hits. It's a little different every time in that sometimes it is strictly in and around the eye, sometimes it extends into my upper teeth and sometimes in addition to the pain/pressure, it feels like a weight has been stuck to the right side of my face and it is drooping down. It is ALWAYS on the right side (my ch side).

Your second post describes the pain as recurring in seasonal episodes. The bouts come 3 or 4 days a week with pain on both sides, but worse on one side than the other. The worst of the pain is directly in the eyeball (not in the orbit, temple or surrounding areas). The individual bouts last for about 8 hours with the pain building and receding somewhat and building again to extremely painful. In between bouts you have, at times a kind of all over "background headache" that sometimes last from the end of one bout to the beginning of another bout. During the bouts you experience photophobia and nausea.

Is this a fair interpretation of what you are experiencing?

If so, it is not surprising that a doctor would diagnose migraine. Migraine can have a seasonal component. Migraine typically has photophobia and nausea. The pain can be unilateral or bilateral and migraine hurts like hell for hours upon hours. The pain of migraine can be centered in the temple, forehead or the eyeball, though it does typically encompass one or both sides of the head.

Unfortunately, most doctors are not that well versed in headache. Most know about the ones they treat most often and some of those try to fit all headaches into the realm of their experience instead of learning more about new headaches.

I am NOT trying to demean your pain, nor am I saying you do not have cluster headaches. Only a doctor can tell you that for sure. I can tell you that the symptoms you describe do not fit the IHS Headache Guidelines for Cluster Headache in the strict sense that they are written, which may be a cause for some of the confusion.

Yes, there are variants and exceptions to the rules for most headache types. There are also many people have multiple headache types. You may fall into one or both of these categories.

Again, I would write out your past headache history and keep a diary of future attacks. Present this information along with any information you find in your research that may help pinpoint the diagnosis.

You might also try going to headache sites that have "experts" that answer questions like headaches.about.com and their headache expert Dr John Claude Krusz. They won't be able to diagnose you, but they may be able to send you looking in the right direction.

I am really sorry you are having these headaches and I can understand your frustration. No matter what the diagnosis, pain sucks. I hope you can find a doctor very soon that will be able to diagnose and treat you properly. I would also be interested in hearing the final diagnosis, when you get one.

Title: Re: is this the "shadow"?
Post by jenright80 on Mar 16^th, 2007, 10:36pm

sorry i just assumed people responding to this had read my initial post on the getting to know you board- exploding eye. my fault. sometimes my brain doesn't work like it used to.