Hello all...just wanted to take a moment to say what a great place for those needing support.

Being a new member to a club that I wish no one ever needed to be a part of if given the choice, I was wondering if I could get a few responses on "shadows" and how long they stay around.

I fall into the "episodal" category with typically 2 cycles a year that last 2-3 months each with varying event levels from the bottom to the top of the kip scale.

My question is that the "shadows" after the cycle (neck tension, left eye watering, etc.) hang around for months and months after the last high level (7-9) ch event.   I find I can't relax, knowing the demon is just temporarily dormant, I won't travel anywhere without my imitrex (tablets) as I'm just waiting it seems for the next cycle to begin because of those residual effect.

Could a couple of you familiar with these long term "shadows" advise if they ever go away?

Thanks so much and have a great non-event day!

-Paul

Usually shadows don't last months and months.  That's not to say they can't but it isn't common.   I've had a shadow right now that's lasted 6 weeks, but that is abnormal.

  Those energy drinks like Red Bull, Rock Star et al....can and do give relief sometimes.   Make sure it has caffeine and TAURINE in it.  Also....if you are drinking any kind of alcohol....stop for a while and see if that shadow eases up.   Alcohol is a trigger when in cycle but it could be causing shadows when out of cycle for you.


Linda

That's pretty much what I would have thought too, but for some reason it just hangs around at a very low level.  It's more of an annoyance than anything else and more evident when I'm tired.  But the darn thing was noticeable all summer and into fall.  Have had everything checked out short of a CT scan.  Sitting here writing this it's readily noticeable.

Redbull, yep got em, bought a case yesterday at my local Gordon's Food Service 24 cans for $32 and change.

Stay away from the alchohol!?!?...hmmm...not sure that's possible.  I haven't found that to be a "trigger" at least not during the consumption phase anyways.  But it's worth a shot (no pun intended).

-Paul

Welcome Paul. Are you still on any ch medications even though your cycle is over? Like do you still take an imitrex tablet or even 1/2 one every day?

The reason I am asking is because if you have been taking the Imitrex pills every day for awhile, when you quit taking them you will get this feeling for a few days until your body gets accustomed to life without them again.

Even though Blake (my clusterhead hubby) has been in remission for almost 3 years, he still has heavy shadow every few days.

He sometimes takes Excedrine Migraine or Tension and hot coffee.  It usually knocks them out.  I think it's the heavy dose of caffeine that gives him the relief.

Jackie

Welcome, have you tried oxygen to bust up that shadow? If i get a " long shadow " i just puff on my 02 tank and that seems to work for me. Shadows SUCK. Coach Bill

I shadow daily while in cycle, and when they start to ramp up to a new level I nail them with o2 and can rid of one within 2 to 3 minutes at 15 LPM with a non-rebreather mask or better which is available on line.

Redd Bull works very well too, but only a couple of those a day. I tried Redd Bull to abort a hit and had some success, but having 4 to 6 hits a night I could not take that much Red Bull so it was no good for me. Plus I am on Verapamil as my prevent (working well) and we are not to mix the two.

Am I confusing you? If so just say "hey Barry, what are you saying LOL."

We are here to help each other.

Welcome home. :)

I'm having annoying shadows this time too. When they really start to bug me I use my 02 and that takes care of them for a while.  Tried Red Bull, but it doesn't like me.
Tabitha  

Although we're all wired differently and we have differing opinions and experiences in treating shadows, there are a number of us that treat them just like any other cluster headache attack with oxygen therapy. The trick is to use a flow rate high enough to support hyperventilation.  For most of us the minimum flow rate that supports hyperventilation is 25 liters/minute.

If you subscribe to the thinking that shadows are essentially the vascular pain associated with a cluster headache attack that hasn't progressed to the point where the trigeminal nerve becomes fully involved, then a vasoconstrictor should work to abort the pain.

Your shadows sound more like a hangover coming after a major attack except yours are lasting much longer than normal as Linda pointed out.  If you still have some of the classic symptoms like droopy eyelid, watering eye, stiff neck, and puffy face on the hit side, how frequently are you taking imitrex?  Do you also have allodynia where your face and scalp on the hit side are painful to touch?

V/R, Batch

Paul, I can't recall that we have ever had a conversation about the duration of shadows but I suspect that the experience is quite variable and not associated with the intensity of your active period.

I'm reacting, however, more to your expressed constriction in our life as you wait for the next bout to begin. This kind of anticipation is a real source of distress, need I say, that does not help the quality of life. Let me suggest that you look at his piece and see if it doesn't give you some ideas:

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You mention Imitrex pills: most folks find this form less desirable for Cluster because it takes long to take effect compared to the injection form. Just speculating: if you are not getting deep and quick results this may contribute to you fearful anticipation. Just something to consider.

If you like the ease of a pill, you may ask your doc for a 5mg sample of Zyrexa. A numbero us have had excellent, fast response with it as an abortive. (See in the Rozen article:
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Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
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Michigan Headache & Neurological Institute for another list of treatments and other articles:

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Hi Paul,

I had a long period of after shadowing this year too, something I had never had before. Personally I have the feeling it was prolonged due to the Verap, allthough I do not have any proof for that.

I wrote a topic about it some months ago:

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Maybe there you can find some usefull stuff.

Pascal.

Thank you for the insight and suggestions.

My apologies in advance as this has become a bit long winded.  Its just that no one else, not even my wife understands (rolls her eyes whenever I bring it up).

I had a Redbull for lunch today (I like Redbull) but have noticed little if any affect on the Shadows.  I am more productive though.

I have typically stayed away over the years (more on that later) from medications of any type, asprin and alike.  I'm just not one to take them and I rarely get sick.  Imitrex I take when I feel I'm either at the point of no return and a full CH is imminent, meaning severe eye droop/watering, left side scalp pain, knot in the left back side of my neck, and upper left gums itch.  Or, when I'm woken at 2:00am in the middle of a full blown CH.  I rarely take Imitrex as a preventive measure due to the data I've read on Triptan rebound events.

What I have found (works for me anyways) is that if I cut a 100mg Imitrex in half, take 50mg, the partially broken pill will abort the CH is approx. 15 minutes.  (yes, 15 minutes of rocking back and forth holding my head, or pacing the house, waiting for relief to begin).  Oh and btw...why can't spouses understand this level of pain!?!? nevermind...I don't want to start that rant.

A whole Imitrex tablet takes much longer to start working.  This I discovered when I was advised that my insurance company limited the number of pills to 9 tablets per script.  25mg tablets to begin with which as you can imagine lasted all a few days when taking two at a time as one 25mg had absolutely no effect.  I asked my Doc to prescribe 100mgs so I could cut them and was surprised at the difference in the speed of relief.

I was unaware that other abortive measures as discussed on this board even existed. That is of course until yesterday when I found this site.  I had been content for the last 7 years with the fact that Imitrex to me was the only silver bullet to kill the beast and I was damn happy for that alone.  And 15 minutes vs. 2-3 hours of having my head in that vise again to me was just amazing.

With these prolonged shadows, I've recently found that taking 2 Advil during the day does a good job in reducing the tightness in my neck and to some extent my left eye issues for a little while.  I've also started taking 1/2 of an Equate sleep aid tablet with the Advil at bedtime when I feel there's a probable chance of a CH that night.  I would say I've had some success with that combination.

I'm pretty sure I'm now near or at the end of my current CH cycle since I have not had a major event since 11/24/08.  (crossing fingers).  But again, the shadows are a part of my daily life.  Sitting here writing this, I have slight sensitivity of my left scalp, back of the neck, again on the left side, and the watery left eye with minor fuzzy vision and I can feel the pressure on the back of my left eye.  So yes, I would describe it as a CH hangover that just won't go away.

It was to the point where I had accept that this was the way it was going to be forever until again yesterday when I decided to take another look on the web to see if any new information was available.

I will look into the other suggestions such as O2, 5mg sample of Zyrexa, etc.   O2 just amazes me as an effective option.

Oh and one more point about the "shadows".  I have found that during this time, that my event side (left side) eye is hypersensitive to bright light and can trigger another event.

Thanks again to all of you!

-Paul

Read the articles Bob posted, his are always the most up to date and always well researched.

Talk to your doctor NOW about oxygen therapy. That way, when the cycle ramps up again, (and as you've discovered, it ALWAYS does!), you'll be ready to go. They keys to oxygen:

Pure oxygen, at a high flow rate, at least 15 LPM, started at the first hint of an attack, using a NON RE BREAHER MASK.  The last part is really important. Your lungs must get only pure oxygen, no outside air, no air you've exhaled. Nasal canulas, re breaher masks and low flow rates are all recipes for failure!

Hoping the cycle's done with you this time around.

Joe