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Dave
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Months of Shadows
« on: Dec 18th, 2005, 9:38pm »
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Had a very bad cluster cycle last spring.  My worst ever.  Ended around June.
 
For the last four months (since the end of August) I've been having on and off shadows, but nothing I would start breaking out the verapamil for.
 
What I call "shadows" can mean a whole bunch of things such as:
 
-general pressure behind the eye with no actual attack
-very mild pain on the cluster headache nerve that can last a while, but it doesn't hurt nearly enough to call it a cluster headache
-pain on the cluster headache nerve, but it only lasts a few seconds, but comes back through out the day
 
Chocolate seems to a big shadow trigger culprit here.  Within a few hours of eating chocolate, the shadows start to really flare up.  Obviously, chocolate is a migraine trigger.  Is it also a CH trigger?  But then again, these don't have the strength of real CH's.
 
I've never had anything like this happen.  Has anyone ever had shadows last for this long?
 
I have no idea whether this is a new CH cycle or if the last one just never ended.
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Re: Months of Shadows
« Reply #1 on: Dec 18th, 2005, 9:46pm »
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I don't think that having a CH hours later can make that considered a trigger UNLESS every single time this occurs.
 
If you find a definitive correlation.....you know what to do.
 
E
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Re: Months of Shadows
« Reply #2 on: Dec 19th, 2005, 11:37am »
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I've never had it last for that long, but often I will get heavy shadowing instead of a full blown cycle. For me it is a tightness in my jaw, and mild burning in temple area. I am always terrified it signals a new cycle, but usually it goes away with some regular use of Aleve (OTC anti-inflamatory) and perhaps some Equinil (a mild anti-anxiety Rx) for a week or so. I also start an odd routine of breathing deeply during shadow episodes in hopes that a little extra oxygen will "exorcise" the beast before it takes hold! With deep breaths, I purse my lips on exhale to force more oxygen into the lungs. I hope your shadows fade soon! Prayers for you - and Merry Christmas! Rich
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Re: Months of Shadows
« Reply #3 on: Dec 19th, 2005, 1:14pm »
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on Dec 18th, 2005, 9:38pm, Dave wrote:

What I call "shadows" can mean a whole bunch of things such as:
 
-general pressure behind the eye with no actual attack
-very mild pain on the cluster headache nerve that can last a while, but it doesn't hurt nearly enough to call it a cluster headache
-pain on the cluster headache nerve, but it only lasts a few seconds, but comes back through out the day
 
 But then again, these don't have the strength of real CH's.
 
 

 
Ok i'm gonna be the stupid one to ask. What is a real CH? Even a level 1 is real but most consider it a shadow. I would consider below a level 1 a shadow. A CH is a CH just seems some are worse than others. I know Im about to get lambasted over this but If there is pain even minor then there is pain. To me a shadow whould also be sort of like the pressure and some symptoms but without a mesurable amount of pain(pressure). Sorry guys for rocking the boat but Its kinda a tender spot for me and noone seems to want to deal with it when others have brought it up. Dave has a valid concern but as double said it may not be the trigger there may be another trigger you may not even recognize. Good luck on your quest Dave and hope you can stay PF.
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Re: Months of Shadows
« Reply #4 on: Dec 19th, 2005, 8:31pm »
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The reason I prefer to differentiate a CH from a shadow is that CH's have uniquely different characteristics which make one wonder whether there is a different mechanism and maybe a different trigger.  
 
For example, if this were a CH, I'd be getting these 90 minutes after I go to sleep.  Not here.  They come throughout the day, and I'm sleeping just fine.   A CH is usually an hour of debilitating pain (unless aborted).  Many of these shadows last just a few seconds.
 
There really isn't much physical pain worth sneezing at with shadows.  It just scares the sh&% out of you because you're waiting for a real attack to come.  
 
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Re: Months of Shadows
« Reply #5 on: Dec 21st, 2005, 10:43am »
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well, before the seeds I use now....it was a way of life!
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Re: Months of Shadows
« Reply #6 on: Dec 21st, 2005, 10:58pm »
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Shadows are cluster headaches. Just very low on the Kip scale. When my attacks first started they came every day and every night. 6 to 8 weeks. Once, sometimes twice a year. Kip 6 and above. After about 20 years they slowed down in number and pain level.
For the last 6 years or so I still get 'cycles' but they have always been just shadows, Kip 1 or 2, every day and once in a while a wake up call. 6 to 8 weeks just like in the beginning.
So to answer your question  
Quote:
Has anyone ever had shadows last for this long?  

Yes.
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Re: Months of Shadows
« Reply #7 on: Dec 22nd, 2005, 4:02am »
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We used to use the Richter scale to measure earthquakes.  It is one thing to measure and discuss a 6.5 earthquake and it is another to experience one.  The Kip scale is as good as we will get in regard to scale, but it is very ambiguous as we all experience it differently.
 
In my opinion the shadow is that feeling you get when you are walking down an alley, or sidewalk, late at night and you begin to get a little nervous and are looking over your shoulder for the mugger who may or may not be there.
 
The headache is when the mugger is there and he starts to beat the crap out of you, you can't fight back and you can't get away.
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Re: Months of Shadows
« Reply #8 on: Dec 22nd, 2005, 5:37am »
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Dave, I am going through that right now. I started a cycle in mid-October and since Thanksgiving have been on Prednisone and Verapamil. I have slept very well, but during the day I get what feels like the beginning of a Cluster Attack--however the full blown attack never comes. It is almost annoying to the point where I am edge waiting for something to happen--Let's hope that both of us get over this real soon..........Scott
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Re: Months of Shadows
« Reply #9 on: Dec 22nd, 2005, 7:29am »
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20-40 mg of pred will normally eliminate my shadows for up to a weeks time.
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Re: Months of Shadows
« Reply #10 on: Dec 22nd, 2005, 8:28am »
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on Dec 21st, 2005, 10:58pm, BobG wrote:
Shadows are cluster headaches. Just very low on the Kip scale.

So basically what I've been having are 4 hour long kip 1's, or would they be called something else?
 
I usually term my residual ch's "shadows", so obviously my termination varies from others.  I basically do not know what else to call them Huh.
 
 
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Re: Months of Shadows
« Reply #11 on: Dec 22nd, 2005, 9:58am »
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I used to try to figure out what the hell to call  themwhen they went on for hours and hours days and weeks and months at a time. Now I just call them pain and annoying and a way of life Grin
 
 
Until I got lucky with the seeds, at least thats the way it is for NOW with me cause with this fucking CH anyday anything can change and I am fully painfully aware of this!!!!
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Re: Months of Shadows
« Reply #12 on: Dec 22nd, 2005, 6:13pm »
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on Dec 18th, 2005, 9:38pm, Dave wrote:
Had a very bad cluster cycle last spring.  My worst ever.  Ended around June.
 
For the last four months (since the end of August) I've been having on and off shadows, but nothing I would start breaking out the verapamil for.
 
What I call "shadows" can mean a whole bunch of things such as:
 
-general pressure behind the eye with no actual attack
-very mild pain on the cluster headache nerve that can last a while, but it doesn't hurt nearly enough to call it a cluster headache
-pain on the cluster headache nerve, but it only lasts a few seconds, but comes back through out the day
 
Chocolate seems to a big shadow trigger culprit here.  Within a few hours of eating chocolate, the shadows start to really flare up.  Obviously, chocolate is a migraine trigger.  Is it also a CH trigger?  But then again, these don't have the strength of real CH's.
 
I've never had anything like this happen.  Has anyone ever had shadows last for this long?
 
I have no idea whether this is a new CH cycle or if the last one just never ended.

 
 
Hey david. We are very much alike. I can very much relate to the things you describe.  My CH started 10 years ago and during the 10 weeks it was around i was diagnosed(thanks dad!) and put on pills to abort the attacks. 3-4 years passed and I got hit again. Got verapamil to removed the attacks while I was in a cycle. But for some reason the cycle didn't end like the last time. After about a month I became suspecious that the verapamil did somehow prolong the attack, so I stopped taking it(It should be noted that my attacks wasn't as severe as when I started the cycle, kip 4-6 and some heavy shadows, but they didn't want to go away). The attack vent away and the shadows decreased.  
 My shadows still remain, I've been having them around 4 years, but they rarely get more than annoying/slightly painful. I haven't taken anything the last 3 years to prevent the attacks, but then again they rarely get more painful than a kip 7. I can count the kip 8-10 on one hand that I've experienced this year.
 This brings me to what you explained further down you post about chocolate. I also react very strongly towards chocolate. If I consumed any kind of product with chocolate in it, I can expect a world of pain. The attacks usually occur  within 3-24 hours after consumption of the chocolate. I will get hit by a monster ranging between 8-10 on the kip scale. Mind you, sometimes, I don't get hit... my shadows might flare a little but nothing to severe.  
 Also, I wasn't "reacting" to chocolate before I started taking verapamil and Imigran(By needle), at least not what I can remember.  One last thing which has changed is snoozing. Before, after I had been diagnosed and my CH had done it's cycle, I could sleep like I had never had CH.
  This is not an option anymore. I can survive the shadows and small kips by staying away from chocolate, but if I one  night get to bed later than usual and I "try" to sleep up thill after 10 AM, I get hit by CH. If I try to take a small nap  in the afternoon I usually get hit with a kip 5-8 depending on how fast I react/awaken from the pain. So sleeping before 10 PM and after 10 AM is rarely something I enjoy, but as I explained previously, I sometimes get a freebie without pain and can get a powernap without to much discomfort.
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Re: Months of Shadows
« Reply #13 on: Dec 22nd, 2005, 7:55pm »
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Hi Dave,
 
I think we can all relate in one way or another.  As an episodic, I consider a cluster as that pain that ramps from a 1 to a 8 or 9 within minutes ... grab the Trex and hang on for relief.
 
However, after a week or so of daily hits, what I call shadows start.  For me, that's a constant, dull, pain in my temple that varies from a 1 to a 4 throughout my cycle.  This is true even with the Verap.  It usually goes away after a Trex dose for a true hit - but only for a few hours.
 
Once the high Kip hits stop, I still suffer a constant shadow pain until my cycle is truly at an end.  
 
This last time, it took 5 months of slowly weaning off Verapamil for the shadows to totally stop.  I still have occasional cluster "twinges" however.  It just serves to remind me the next cycle will be coming eventually.
 
Some people consider shadows to be low-level clusters, but I've always felt that they're a sign of trigeminal nerve irritation - almost a residual of the cycle.
 
Just my 2 pennies worth ...
 
Kris
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Re: Months of Shadows
« Reply #14 on: Dec 23rd, 2005, 4:02pm »
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These responses have been very helpful.
 
Thomas, thanks for your comments about chocolate.  It seems like we have a similar reaction.  There is definitely a 3-24 hour lag for it to kick in, but I have certainly experienced a one-to-one correlation of eating chocolate to CH activity.
 
I've also had similar responses to both decaf and regular coffee and to tea (even white tea, which is very low caffeine).
 
I have doubts that caffeine is the main factor here.
 
Nonetheless, I am avoiding booze, coffee, chocolate, and anything with caffeine.  In other words, (almost) everything pleasurable in life!
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