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CaseyBart CH.com Newbie Offline I Love CH.com! Posts: 22 Junction City, Kansas Gender:	Shadows? Jun 1^st, 2009 at 3:11pm I'm 18 and was recently diagnosed with CH but have had the headaches for as long as I can remember. A couple days ago is when I first started actually researching what CH was and I keep hearing stuff about shadows. What exactly are they?
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ferret

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Re: Shadows?
Reply #1 - Jun 1^st, 2009 at 6:46pm

Shadows are another wonderfull aspect of life as a clusterhead. Many of us expierence minor headache pain and other sensations in between eposodic attacks. As with everything else about clusterheadaches, it's always a little different for each person and sometimes a little different each cycle. For me, they start before I get any kind of real severe headache and they last thru the cycle, hanging on for a while after the severe eposodic attacks are done. What I have more trouble with is the "other sensations", which go everywhere from dizziness, tingling, and ringing in my head to minor pain, tightness, and a very difficult to describe kind of "aura" feeling. It can be very disorienting and it's hard to put into words exactly what the "aura" sensation is, but it's kind of like the feeling you get when, say, you wear a tight hat all day, take it off late in the evening and feel like it's still on your head, only this sensation is a bit stronger a feeling that that.. It's basically a minor manifestation of the headaches, but just on a smaller scale and kind of in the background

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Tamara

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Re: Shadows?
Reply #2 - Jun 1^st, 2009 at 8:48pm

Wow, It is so hard to hear a 18yr has CH's . What kind of treatment are you on. (meds). Stay stong. I wish I could take it from you. Nobody should have to go thru this at such a young age!!!! At first I thought this was because I'am getting older. I found that not to be true. Keep looking for a formula that works for you. If you haven't already. Shadows are the more easier ones. Also to let you know you may be getting a big one. Let us know how you are doing? Tamara

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CaseyBart

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Re: Shadows?
Reply #3 - Jun 1^st, 2009 at 10:06pm

I was just diagnosed with it but I've had these headaches for as long as I can remember. I remember when I was little and I would get them really bad my mom used to get mad that I waited so long before I said anything. But I had never waited I took meds as soon as I felt it. I never realized anything was wrong until for the past year Ive had them everyday in the same spot. My doctor thinks its CH so he gave me some Hydroconde cause I told him it used to work in the past. I'm going back next week and he said if I do he's going to refer me to a neurologist. I'm just hoping I get on a treatment that works soon cause the pain is getting worse. And from what I've heard about shadow I do get those just about everyday before I get my headache.

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ellenjoanne

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Re: Shadows?
Reply #4 - Jun 2^nd, 2009 at 5:00pm

Hi Casey,

Geez! 18 and getting CH as long as you remember - I feel for you! Me, I've been getting them since I turned 36. That's nothing compared to your situation! To me, Shadows are like baby Cluster Headaches (say Kip 0 to Kip 1 or Kip 2). In other words - they're a "shadow" of the real thing. I'm in a "sort of" suppressed CH cycle, courtesy of the Lyrica I'm taking. While it's keeping away those nice, nice, nasty, Kip 8 and Kip 9 CH attacks I usually get, I'm having many more shadows than I usually have.

For me, Shadows occasionally become a full blown CH attack. If doesn't happen very often. But, it's happened enough times, that I get nervous when I have a shadow, and start timing it, to see if I'm in for a ride on the Pain Train. Usually I'll know within about 10 minutes or so. If I don't have a CH attack by then, I know I'm just going to have to deal with an irritating Shadow that's about 15 minutes to a half hour in duration. When I have a Shadow, like a CH attack it occurs in my right temple. Occasionally, I'll also feel a twinge, and some pressure in my right eye socket.

Lately although, I've been having the unsettling feeling of having Shadows on the left side of my head. In a few cases they have switched back and forth between my left and right sides, when they were occurring. That makes me worried, because I wonder if my CH is switching from my right side (where I've gotten it for the past 9 1/2 years), to my left side. If I start having shadows when I'm not in a Ch cycle, I also get worried, because it can be an indicator that I'm heading into a CH cycle. As others have alluded to, shadows are creepy and annoying.

Hugs,
Ellen - trying to ignore a shadow she's been having for the past 15 minutes or so

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« Last Edit: Jun 4^th, 2009 at 12:16pm by ellenjoanne »

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Batch

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Re: Shadows?
Reply #5 - Jun 2^nd, 2009 at 5:35pm

Casey,

There are likely as many opinions on the nature of cluster headache "shadows" as there are cluster headache sufferers willing to talk about them. Having said that, if you read through the Kip Scale tab on the left you'll see that Bob Kipple associated shadows with the symptoms and pain at Kip-3 pain levels and below. In short using Bob's definition, shadows are nothing more that a mild cluster headache attack up to the Kip-3 pain level.

There's a good way to calibrate your sensing of the Kip scale. It is kind of like known temperature points where water changes state where the freezing point of water is 32º F/0º C and the boiling point is 212º F/100º C.

Most of us wake up from sleep when the pain level is between Kip-3 and Kip-4. Our eye starts to water at Kip-6 and the nose joins in on the gush at Kip-7. By Kip-8 we're dancing with the stars and by Kip-9 munching on the carpet and banging away on our heads.

Shadows can hang around for quite a while. A few will go away all by themselves if you get up and start walking around. Others will linger for hours and still others will be just a transitory state lasting only a few minutes before exploding into a high Kip-level cluster headache attack.

I look at it this way... If you have a shadow, you're having a cluster headache attack and you should abort it as fast as you can. A great many of us use oxygen therapy as our first line of defense in treating our cluster headache attacks.

Many of us have been using oxygen therapy at flow rates that support hyperventilation and found this method far superior to flow rates of 15 liters/minute and below. There's good reason for this as you'll see in the email I sent.

The first rule of oxygen therapy is START EARLY at the first indication of a pending attack. If an attack wakes you from sleep, grab the O2 as soon as you're awake enough to know what's happening. There's good reason for this as well. We've been collecting data on cluster headache aborts with oxygen therapy and there is a direct relationship between the Kip-pain level and time to abort. Assuming the flow rate is 15 liters/minute or higher (many of us are using 25 liters/minute and higher flow rates), the greater the pain level the longer it will take to abort.

If the flow rate is too low (7 to 9 liters/minute) and the kip-level high > Kip-6, an abort may not be possible or it will take so long the attack may end on it's own.

If people start early and they have no other medical conditions that impede the abortive effects of oxygen, we're seeing a 99% success rate with oxygen therapy at flow rates that support hyperventilation (a flow rate of 25 liters/minute or higher). On average, the abort times are equal to or less than that obtained with imitrex injections at 7 minutes for attacks from Kip-3 to Kip-9.

Take care,

V/R, Batch

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MattyAA

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Re: Shadows?
Reply #6 - Jun 3^rd, 2009 at 4:38am

You say shadows are cluster attacks, well then I have them 24hours a day since 7 weeks, my big hits slowed down and stopped after 3 weeks exactly.

Then I got constant headache, switching sides right to left, left to right and sometimes both sides, Then I got wisdom tooth extraction and fun began... constant kip6 lasting 24 hours a day if I do not use dicloberl (NSAID). I guess I am fucked up and need some nerve surgery, it is kind of insane to have kip6 for 2 days without break?

Or did my Cluster Headache evolved to Hemicrania Continua?

Though there is response to sumatriptan I think.

It only reduces pain to shadow level but thats it, lasting 24hours a day all the time, I barely can sleep.

And oxygen doesn't seem to help even at 20lpm for 20 minutes.

Might be I have bad mask or shit, but pity I live in Poland where there is hard time to get stuff..

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ellenjoanne CH.com Junior Offline Posts: 77 Greenfield, WI Gender:	Re: Shadows? Reply #7 - Jun 4^th, 2009 at 12:20pm Is it possible that your CH has evolved into migraines? I've read of of some CH suffers also having migraines.
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Batch

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Re: Shadows?
Reply #8 - Jun 4^th, 2009 at 6:58pm

Quote:

constant kip6 lasting 24 hours a day if I do not use dicloberl(NSAID).

See your doctor or neurologist asap.

I'm not a doctor, but what you're describing does not sound like a cluster headache... Headaches and even shadows that last that long do not meet the classification guide for cluster headaches...

And... to my knowledge and that or other far more learned neurologists expert in treating cluster headache sufferers on a daily basis, NSAIDs are not effective in treating cluster headaches or shadows.

The last time I had a headache in the Kip-6 pain level range that lasted more than 24 hours with pain on both sides of my head and neck, I called my Doctors at NIH. When I arrived at the clinic and they realized I was telling them this was NOT a cluster headache and that it had lasted much longer than any I had experienced in the last 10 years, they sent me to radiology for a MRI.

Less than a minute after leaving the radiology department and walking back to the clinic, a team of 3 doctors and a nurse came running down the hall, gang tackled me onto a gurney, and wheeled me back into radiology for a lumbar puncture under fluoroscopy. The MRI had indicated a clear inflammation of the meninges.

The second the lumbar tap needle reached the subarachnoid space of my spinal chord, CSF shot all over my back and the pain vanished immediately. Unfortunately, my body replaced the 5 cc of CSF 15 minutes later and the pain returned with a bang just as the lab called back with the results... The eosinophil count in the CSF was slightly elevated. (An eosinophil is a special type of white blood cell associated with the immune system.)

The initial tentative diagnosis was Eosinophilic Meningitis... I was hospitalized and treated aggressively for 48 hours. Not fun...

A little more background... I was still episodic at the time and out of cycle so when the headache first presented and it was clear to me it wasn't a cluster headache, I started taking NSAIDs per the directions on the label. The headache started Saturday night and after two terrible nights of pain with repeated doses of NSAIDs, by Monday morning when it hadn't cleared, I called my doctors at NIH and they told me to come in for a checkup.

After a very thorough workup during my hospital stay and the fact that the eosinophil count was not high enough to support the initial diagnosis, they changed it to drug-induced aseptic meningitis brought about by the use of NSAIDs.

See your doctor.

V/R, Batch

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brenda182

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Re: Shadows?
Reply #9 - Jun 4^th, 2009 at 7:20pm

Casey, I started getting CH when I was about 12. Got much worse at 16. Didn't get professionally diagnosed til about 30!! Because I am female docs always tried to tell me what my symptoms were and they must be migraines. I had to look it up for myself...finally got someone to believe me!! Shadows are exactly what everyone has said...smaller versions of the actual thing...usually an indication of one coming. Good luck with your neuro appt. Stay well informed, ask a lot of questions. I have had them for about 28 years now. The last 1 1/2 yrs almost free from the beast!! Now hes back...thats why I'm here. Always learning and trying new things til you find what works for you...

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