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Cluster Headache Help and Support >> Cluster Headache Specific >> What are "shadows"
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Message started by RuVa on Jun 10th, 2010 at 3:46am

Title: What are "shadows"
Post by RuVa on Jun 10th, 2010 at 3:46am
Hey everyone,

during my relatively short stay so far at ch.com, I've seen many people write about shadows.
Some feel it during cycles, some even before a headache starts, or before a cycle.

I wonder, can someone try to explain what a shadow feels like?
I have been feeling so many different things, all kind of buzzes and tingles probably due to topamax. I should have an appointment with my doctor the next week or so about this.

But I wonder, have I maybe been experiencing "shadows" to but I haven't noticed, or just am too unknowing to realize it was a shadow?

Are there specific things some amongst you feel then before a cluster headache starts kicking in? What do you feel? I know that when it comes to CH there are quite some experiences and feeling that might seem awkward or difficult to explain. But I would really like to find out more about these shadows.

Maybe I don't have them. Maybe that's good, maybe not. I just don't know. What I do know is that in general I just don't feel well. Hopefully after the meeting with my doctor, and thereafter my neuro I will be able to step away from topamax. Maybe then things will change.

Cheers and thanks for your time.

Title: Re: What are "shadows"
Post by dockwolk on Jun 10th, 2010 at 7:15am
A cluster headache is at the mouth of the cave, a "shadow" is way deep inside, and sometimes make its way to the mouth.

Title: Re: What are "shadows"
Post by seaworthy on Jun 10th, 2010 at 7:21am
Shadows are sort of "phantom" headaches we get, usually as a warning that an attack is on it's way. There are lots more, but you'll catch on, and don't be afraid to email the poster to ask for an explanation if you don't understand something.


Title: Re: What are "shadows"
Post by RuVa on Jun 10th, 2010 at 7:46am
hmm dockwolk, very deep and cryptical explanation :)
Doesn't really help me understand it though, but thanks for your reply. I can understand this is not easy to express.

seaworthy, with "phantom" do you mean a headache that is not really there? Like, it feels like you're getting a headache but you're not? Or do shadows actually involve real pain? Is it a lighter headache or...?
I guess I don't really understand yet  :P

Maybe I should indeed mail the person when I get to a post about shadows, it's just I'm relatively new and still don't know too much about things yet. Just want to be careful about being too invading.

But anyways, thx already for these replies. I hope more will come!

Title: Re: What are "shadows"
Post by Grinner62 on Jun 10th, 2010 at 8:31am
For my shadows, an analogue is squeezing an orange. It feels like someone is squeezing the right half of my head, increasing the pressure until I almost want to have a sip of beer or something to trigger the headache so I can kill it.

Not so much pain as pressure.

But then again, sometimes I'll get a short jab with an icepick for 5-10 seconds. The only constant with these things is they change.

Shadows are not mandatory, the beast likes to sneak up on us too.

Title: Re: What are "shadows"
Post by RuVa on Jun 10th, 2010 at 8:40am
thanks for your reply Grinner62

I can't say I have experienced a pressure-like feeling.
But I have sometimes had a small sharp pain that you could compare to a toothpick or needle at the height of my temple. It only lasts a couple of seconds but is pretty intense..

Although, I've had that feeling just yesterday for example and it's already been 3+ weeks since my last cluster headache. Could something like that still be a shadow?

Well, it seems I'm better off not having these shadows so I'm glad they're not automatically part of the experience.

I think I'm getting an understanding though.
Shadows can be different from person to person right?
It's a feeling, pain, pressure, but not even necessarily in the head, and it seems obviously linked to CH, whether it is before, during or after an attack that it occurs?

Does that not make it difficult to know whether it is a side effect from maybe using o2 during a cycle, or increasing meds dose during a cycle or if it is really CH causing it?
I really don't want to sound blunt so please forgive if I did. I'm merely trying to get things straight for myself here.

Cheers

Title: Re: What are "shadows"
Post by anthony g on Jun 10th, 2010 at 8:46am
a shadow for me is a constant uncomfort on the cluster side(right side) of my head pressure from my temple down the side of my head to my neck. somedays more intense than other's i guess just a bit of a remonder that "the beast" is still lerking :-/

Title: Re: What are "shadows"
Post by Guiseppi on Jun 10th, 2010 at 8:47am
You'll get a dozen explanations ;)...people have different ways of describing it. I call it that feeling where the beast is scratching, I can feel the claws just starting to dig in. There is pain, and it's that distinctive CH pain, not a tension headache or a too much red wine headache. Sometimes it'll be accompanied by the droopy eye and runny nose, sometimes not.

So in short it'll have all the symptoms of a CH that just never gets off the ground!

Joe

Title: Re: What are "shadows"
Post by dockwolk on Jun 10th, 2010 at 9:31am
RuVa, lemme try again.
A shadow is more of a concentrated area of a "not normal" feeling in your cluster area.  I usually get these before my cycle starts, and a few times off cycle. As mentioned, they can go away or lead to something bad.

Title: Re: What are "shadows"
Post by Batch on Jun 10th, 2010 at 12:06pm
I've looked over Bob Kipple's definition of the Kip-Pain Scale as well as some of his posts and came up with the following:

A shadow = a cluster headache, but at the lower end of the Kip-Pain Scale.

Bob's approach in generating the Kip Scale appears to be based on a less clinical method of characterizing pain levels that associates them with the actions and sensations CH'ers experience at each level. 

I tend to take a more empirical approach that builds on Bob's approach by anchoring the CH pain scale with markers that are analogous to water freezes at 34º F (0º C) and it boils at 212º F (100º C).  In other words, familiar markers we all experience as the pain increases.

For example, most of us wake up when the CH pain reaches Kip-4 ± 1 Kip-level and we can't get back to sleep at Kip-5 or above. 

For most of us, the eye on the hit side starts to water at Kip-6 when the stinging element of CH pain becomes more pronounced and by Kip-7 the nose has joined the saline gush.

Between Kip-7 and Kip-8, the remaining symptoms associated with the cluster headache syndrome become present.

Between Kip-8 and Kip-9, remaining motionless is not an option,  and we do the little circle dance, munch on the carpet, bang off the floor or walls...

The best thing to take away from this thread is that a shadow is a headache and it should be treated as soon as possible.

The pathophysiology of a cluster headache attack is not clearly understood and there are essentially two basic camps...  neurogenic and vascular. 

I tend to think both come into, play but sequentially in patterns that can vary from CH're to CH'er as we're all wired differently...

Some of the experts think the CH triggering mechanism originates in the hypothalamus and follows synaptic paths that eventually enervate the affected trigeminal ganglion and surrounding vascular structures resulting in vasodilation and pain along with some or all of the other classic CH symptoms...

Others think the triggering mechanism is a cocktail of vasoactive hormones, enzymes, and chemicals along with changes in blood chemistry and a downward shift in arterial pH to more acidic conditions...   This can be triggered by the hypothalamus or externally by other stimulants.

This cocktail acts as catalysts to trigger vasodilation of the vascular structures around the affected trigeminal ganglion as well as inflammation of these nerves and pain along with some or all of the other classic CH symptoms.  The fact that CH tends to be one-sided can be easily explained by simple differences in the morphology of the neurovascular structures between one side of the head and the other.

As if this wasn't confusing enough, there is still the chicken and the egg conundrum...  Which comes first?  Is the pain caused by vasodilation or is vasodilation a result of the pain?

I tend to take a far more simple approach to all this...  Vasodilation and pain are directly related...  Furthermore, we know that nearly every abortive (prescribed, OTC, entheogenic or homeopathic) used to treat the acute cluster headache involves a component or mechanism that stimulates vasoconstriction, and that the cessation of pain and the end of the attack are associated with vasoconstriction.  It's also become clear that lower arterial oxygen levels and increased arterial carbon dioxide levels are co-contributors to the CH triggering mechanism.

Sooo....  sitting around with a shadow means you're likely experiencing vasodilation in and around the trigeminal nerve...  Furthermore, the longer you endure shadows, the vascular structures in and around the trigeminal nerve weaken, lose muscle tone, and become more flaccid due to the constant vasodilation.  I contend that this can also make you more susceptible to CH attacks with an increase in their frequency and intensity.

This also makes the vascular structures in and around the trigeminal nerve less resistant to the CH triggering mechanism no matter the path.

The bottom line as I see it is simple...  If you're experiencing a shadow, don't wait...  blow it away with your abortive of choice.

Take care,

V/R, Batch

Title: Re: What are "shadows"
Post by Chad on Jun 10th, 2010 at 12:29pm
A shadow to me is a "tingler" that sits in my right tempo. 

It's a low-grade pain (low KIP), but tolerable.

Title: Re: What are "shadows"
Post by Chad on Jun 10th, 2010 at 12:35pm

Batch wrote on Jun 10th, 2010 at 12:06pm:

The bottom line as I see it is simple...  If you're experiencing a shadow, don't wait...  blow it away with your abortive of choice.


V/R, Batch
What Batch is saying, is take the shadow as a warning and get to the nearest abortive.  If we didn't have shadows, it would suck even more.

Title: Re: What are "shadows"
Post by Buzz on Jun 10th, 2010 at 1:00pm
Shadows are gentlemen who act as Cliff Richard's backing band  ;D

On a more serious note, my shadows are like twitches and tugs and tremors that fizz and pop inside my head. They do not manifest as pain so much as a sensation although they can suddenly bite and give a sharp stab of pain for a second or two.  My shadows are most noticeable at the end of a bout - almost as if the pain has been switched off but the mechanism of the headaches is still busy.

Title: Re: What are "shadows"
Post by Headache Boy uk on Jun 10th, 2010 at 6:46pm
although I'm not in cycle at the moment or at least not having full on attacks I have still had shadows several times a day every day since my last/first cycle ended back in December.

for me the muscles around my right eye feel stiff , as if I were out in the cold, and my right eyelid twitches rather annoyingly ,my eye also waters some times and it is always accompanied by a small degree of dull pain with the occasional stab just to keep me on my toes ,as it were.

I can usually get rid of them by drinking a can of red bull if they get too annoying, but today they just won't stay away and i dare not drink more than two in a day , makes me jumpy and restless (funnily enough )

don't know if this is of any help to you but that's about all I know about it all-tho Bach has got me wondering if I should be using a prevent of some sort even out of cycle.

any how please don't be afraid to ask questions and there's no need to apologise for asking them , if there's any information that we can share that can help some one with this affliction we are more than willing to do so .

good luck

Nigel

Title: Re: What are "shadows"
Post by black on Jun 10th, 2010 at 6:47pm
For me shadows is random or continuous pressures which can last for min or even hours,can reach till kip 4 maximum and happen only in Face.
around the eye,jaw,nose,over the mouth and always in the right side where ch is for me.
It is not a pre-symptom of an incoming attack but rather better that the area is active in a way that i ll probably get hit some time during the day and yet not always this happens.

Now an incoming attack is a whole different thing which gets me alert right from the beginning.
A pressure and short of discomfort in the back of the neck and the same happens in a shape of a bow  starting from the back of the neck in the base of the skull till half of the back right side.The bow it's not a pain exactly but a discomfort for sure.
At the same time a pressure in the neck in the carotid area and the main thing is a deep brain pain like a very thin needle just above right ear one or two cm.
all these can last from five min till twenty min until a pressure somewhere in the right side of the face starts escalating rapidly and the hell breaks loose with these electric,fire whatever bolts of the beast's a$$ start fart with no rythm in my right face simutaneously with the other discomforts and this is how you get an orchestra.
Eye drop usually is right from the beginning and getting worser while nose stuff or running and tearing gets later on.

so for me its something completely different.
shadows can reach till kip 4 max and usually with nothing more than just an eye drop and aa bit tearing if it happens the pressure to be in the eyebrow and upper side of the cheek.never the sone stuff or running.
While a ch can run all the scale from kip 1 till kip 10
with all the other happy things that get me really frustrated when in i am in public.usually when it starts to happen the hyppothalamus or whatever brain part is responsible puts on Run like Hell of pink floyd and me trying to find an escape route.
Still can't figure how to get the lasers pink floyd had in pulse concert :D

As for the advise to always get an abortive no matter what, if it is O2 is good as it is harmless and inexpensive.Otherwise i don't find it very good.
triptans can be used only to limitations and like this you can spend them whatever in stock in just two maybe three days which is also very expensive..

so have others seen these differences or is just me?

P.S.1 i keep my right for what ive said to be taken back within next five min as noone can be really sure with ch
P.S.2  one thing is what i am sure.what's the difference between kip 9 and kip10?
a kip 10 is a new kip 9 from just a previous kip 9 you haven't recovered yet and still exhausted :-X





Title: Re: What are "shadows"
Post by RuVa on Jun 11th, 2010 at 2:23am
Thanks all for sharing your insight and experiences with me!
This was all very informational and helpful and will surely help me define better what I feel.

I will have to pay better attention to subtle feelings in-cycle.
I'm having an appointment with my doctor next Tuesday to have a decent chat and will talk about taking verapamil instead of topamax as well as 02 abortive.

I still have a lot to explore.
Cheers everyone and thanks again for your patience with me!

Title: Re: What are "shadows"
Post by MattyAA on Jun 11th, 2010 at 7:41am
What if someone has shadows almost 24/7? And red bull doesnt kill them, and Oxygen kills them as long as I stay on it, so if i stay on O2 for 20 minutes I am PF I get off it, in 1-2 minutes shadow gets back.

Also my shadows jump between left and right side.

Any suggestions?

Title: Re: What are "shadows"
Post by seaworthy on Jun 11th, 2010 at 8:16am

Quote:
seaworthy, with "phantom" do you mean a headache that is not really there? Like, it feels like you're getting a headache but you're not? Or do shadows actually involve real pain?


Shadows are the symptoms on an oncoming attack and can be with or without low grade pain.

Like standing on the railroad tracks looking into the tunnel. You can feel the vibrations of the oncoming train. your can hear a dull roar, and catch a glimpse of the trains light in the tunnel. Then you just wait.

Title: Re: What are "shadows"
Post by Joni on Jun 12th, 2010 at 2:09am
I quickly found out that shadows are very individual in description/symptoms.  So, I'll give my 2 cents as well.  For me, it is a general pressure in the affected side of the head that can also radiate into my neck/shoulders, but not a sharp pain in one specific area.  It is accompanied by a dazed feeling in general similar to a cluster.  When it is present, I know I am certainly not out of the woods with my cycle.  It's like the cluster is reminding me that it is still in control...teasing me.  It also tells me that I am not controlling it well enough yet with my prevention and or abortive.  I hate them as much as the actual headache because at least I know the cluster will only last about 90 minutes and my shadows can last for hours.

Hope this helps.
Joni

Title: Re: What are "shadows"
Post by anthony g on Jun 12th, 2010 at 7:27am
My shadow's are exactly what Joni said to the T

Title: Re: What are "shadows"
Post by Chad on Jun 12th, 2010 at 8:17am

Joni wrote on Jun 12th, 2010 at 2:09am:
...shadows can last for hours.
I've had a shadow after hit once that last 8 straight hours.  This was my pre-O2 days.

Title: Re: What are "shadows"
Post by Ginger S. on Jun 12th, 2010 at 8:38am
Shadows evil little beings:

When the Horrendously painful CH Beast is gone and you don't feel like running away from yourself screaming, the less painful CH Demons come out to play, only they play longer. 

When the CH Beast is away the CH Demons will play.

:-/

Title: Re: What are "shadows"
Post by CHScooter on Jun 12th, 2010 at 9:54am
My shadow experience begins with a sharp, wtf? stab usually behind the eyelid on the side the beast decides to visit. Followed by a swelling of the eyelid, starting of sinus drainage, and an itching behind the eye. Followed by a weird peripheral vision game, when it "feels" like I have lost my peripheral vision, but it is actually there....best way I can describe it.

Title: Re: What are "shadows"
Post by bcsanders on Jun 12th, 2010 at 10:12am
I consider my shadows a dull pain on the effected (always right) side of the head.  It means that there is something there and we all pray that it remains just a shadow.  It could be a massive episode coming on or just the clusters that like to play with a ball of yarn like a cat.  Kind of in the room but keeping to themselves, but you know they are there.  I agree with what was said above, the cluster goes away in about 45 minutes but the shadows could last hours.  I had a shadow last night before, during, and a bit after the bus ride home from work for about 2.5 hours.  When I am in the thick of a cluster period somehow I always feel them, but getting them more now as I hope I am ending my cycle.  Last pain above a 2 was on Wed.  3 days in a row of peace, I am getting kind of giddy.

Brett C.   

Title: Re: What are "shadows"
Post by thingfishp on Jun 12th, 2010 at 12:16pm
OVer the past several days I've had almost non-stop shadows and short phantom attacks throughout the day.  I'm assuming that phantoms are when the twinges of pain are there occasionally, but the pressure in the eye and head are pretty constant, dull but present enough to be disruptive.  Anyone want to clarify that for me?  I'm new to the site and terminology, which I must say has been enlightening and liberating.  Just being able to name something offers some modicum of power.

The shadows over the past 2 days have been jumping all over my head, occoaaional cold kneck, facial tingles - weird stuff.  They are much more mild and infrequent today; only one real attack last night and I was able to sleep for 5 1/2 hours this morning (with a little help from Lunesta).  Don't know what this means, but I'm cautiously optimistic.  My wife noted that this is the first day in a month that I've thought about sex and food, two of my favorites.  Here's to hoping.

Title: Re: What are "shadows"
Post by bcsanders on Jun 12th, 2010 at 2:24pm
I agree thingfishp.  Enlightening and liberating.  For years I thought the pain was just bad sinus headaches.  Funny that as a kid and young adult I always got bad sinus infections.  I don't think i have had one since I got the cluster headaches.  I thought I was the only one who suffered from bad sinus headaches and the doctor prescribed decongestants just weren't working.  Stupid, but, "Knowledge is Power".  (Sorry for diverting from the original post though!@#$%)

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