I keep seeing people talk about shadows? What are they?

Slightly different for each individual, but it's a headache with all the CH symptoms, for me, the droopy watery eye, runny nose, and I can feel the beast starting to dig in his talons, but it never really gets going.

They are seperate and distinct from a tension headache, a hangover headache etc., because it "feels like a CH".

I treat my shadows the same way I treat a full on atttack, with oxygen or an energy drink, I prefer sugar free red bull.

Joe

Joe's right, no surprise there, and it is different for everyone. For me, a shadow describes a low level KIP that imitates an aura-like experience which would normally predict a full on hit. But it never really develops. It just hangs on, and hangs on. I've gone hours with this until I couldn't stand it any longer. I learned to treat them, as Joe said, just as I would a full hit. They diminish over time. Blessings. lance

what Joe and Whimsey said. I have shadows daily for over a year without getting major hits with breakthrough headaches. Shadows are to me at least a reminder that the beast is unpredictable and always be ready!
Anthony

+1 to all the above.  i find that verapamil has a tendency to increase the prevalence of shadows while it decreases the severity and frequency of hard hits.

prevalence of shadows while it decreases the severity and frequency of hard hits.

Not a bad trade off. ;)

Joe

not at all a bad trade off.  totally worth it.  some of the other side affects might bug me a little more when i get back home to my wife though... [smiley=mellow.gif]

so often times i get jabs of pain behind my left eye that last for 15 to 20 minutes and i think it is going to go into a full blown headache but it doesnt.  Its just as if the beast is saying.... "I am still here! I havent gone away!!!!" So i guess that would be a shadow.

Bonnie lee wrote on Oct 15^th, 2011 at 5:12pm:

so often times i get jabs of pain behind my left eye that last for 15 to 20 minutes and i think it is going to go into a full blown headache but it doesnt.  Its just as if the beast is saying.... "I am still here! I havent gone away!!!!" So i guess that would be a shadow.

that would be a shadow my friend!

Bonnie Lee,

What are shadows? Shadows are no fun.  ;) But seriously:

Compared to a full blown hit, they are a walk in the park, if they don't last long, they are a minor inconvinience. If they drag on and on, then they can become an issue unto themselves....

I've experienced both and as with all of this, not the same from cycle to cycle or person to person.

They are CH's that never really take hold, as if they are holding back for whatever reason. Many of us experience them, from short duration to very long, and as with everything else concerning this cursed malady, it's never the same.

All the Best,
Baer

AubanBird wrote on Oct 15^th, 2011 at 4:21pm:

not at all a bad trade off.  totally worth it.  some of the other side affects might bug me a little more when i get back home to my wife though... [smiley=mellow.gif]

Like CH isn't bad enough.....he has to take THAT away.... :'(....I feel your pain.

Joe

Hi All!
I'm a newb to this board and as it seems with me, my shadows are almost constant with this cycle. The whole thing has me down in the dumps. Just wanna crawl in a hole and die. However I've been full blown PF for over 24 hrs. I no it's just lurking in a dark corner waiting for me to fall into a false sense of security...AND THEN BAM...Floored once again...How did we all end up with about the shittiest card in the deck...!!

Yes its wonderful to hear my husband say "you havent had a headache in while" But i know in the back of my mind, THE BEAST is there he is just waiting for a nice day to ruin.

How did we all end up with about the shittiest card in the deck...!![/quote]

Oh, I think there are plenty of cards dealt worse than ours, just feels that way sometimes.

I came to the conclusion we get it so someone less strong gets to carry on... Takes a tough person to deal with it, not all can... Makes it a little more palatable that way...  ;)

Not any more fun, or easy to take, but it works for me... it's my story and it can end anyway I want it to....
All the best,
Baer

i for one dont think i have been handed the shittiest cards in the deck.  allow me to explain:

my CH's were never very bad before i joined the army.  mild sporadic hits that i wouldn't let interfere with my life.  back then, i had a successful business, college scholarship offer that would have paid up to a doctorate in dairy science, was working as a manager and research coordinator for the university of florida and had retirement benefits, health benefits, and was offered on-site housing with free utilities.  all that and nobody to share it with.

after i joined the army i suffered some damage to my internal organs from exertional rhabdomyolysis, my CH went severe and chronic.  i met my wife less than a year before that, and married her after knowing her for 26 days.  we worked through all the problems associated with diving into such a commitment.   so, today i make a fifth of the money i made before, am in nearly constant pain, and my future looks far less certain than it did five years ago.  i would never trade it though.  to me, having nobody to share my life with was far more painful than living with cluster headaches.  maybe its just who i am, but to me, all the riches, joys, and pleasures in the world would mean NOTHING if i didn't have anyone to give them to.  my wife is a great supporter, but more than that she is my closest friend.  my wife and daughter are my whole world. 

sometimes, during my hardest hits i smile.  my buddies think im crazy, smiling during excruciating pain.  what makes me smile is the thought that flashes through my head...
my wife has seen the beast come out in me, and she is still there.  i smile while i cry in pain because even the pain cant make me forget that she is still there.  i have never had that before in my life.

yeah, this big bad paratrooper is a softy at heart.. :)

i for one consider myself blessed.

God bless u bro! thanks for sharing that! Gives us ALL hope my friend!

Anthony

Quote:

my wife has seen the beast come out in me, and she is still there.  i smile while i cry in pain because even the pain cant make me forget that she is still there.  i have never had that before in my life.

Poetic, lovely and true. There are a lot of cards in the deck I do not want dealt to me, and losing members of my family to senseless tragedy is right up there. I endure, we endure, not because it tips some kind of cosmic scale in favor of others, but because this is what we have been given to endure. Everyone bears some burden or other, and some burdens are merely heavy, while others are crushingly so. I think it is because we bear the burdens of "thlipsis" together (a weight which threatens to bury us and destoy us) that we are able to carry on. That, and the faith and hope which lives on despite the pain. Blessings. lance

Went to the doctor yesterday and he spent an hour and 15minutes talking to me. Put me on predisone, and back on veramipil as I stopped taking it because it was making me dizzy and tired. So we are starting with 120mg long lasting once a day and building myself up. On shots instead of e nasal spray. Told him about the energy drinks and he looked up any studies on it and found none.
Said he could not recommend it because there are no studies for it.  Anyway I keep a headache diary and I have had 8 encounters with the devil between July 1st until October 14th.
I hope these meds work. Next step is maybe depakote or lithium.

A 120mg dose is very low, with a typical effective dose being 360-480mg a day with some people going as high as 1000mg.

Any dose changes should be done in consultation with your doctor and allowing 10 days or so between dose changes as a minimum as it can take a while for the dose change to become effective.

Am starting veramipil 120 for one week along with the predisone and then going up to 240 a day for another week and the up to 360. When we tried this before and didn't slowly titrate it I was a mess. Dizzy, sleepy, forgetful. Started the predisone this morning. But still have an achy feeling in my left eye.

It looks like you're following a good approach.

Even prednisione can take a day or two to kick in, so hopefully that will be helping you transition to verapamil being effective quickly and effectively.

Started with that nasty feeling on my way home from work last night. Left eye starting to hurt worse than it was earlier. Got home and chugged a monster drink for the first time in my life and got on the oxygen for 20 minutes. Had this feeling inside of me that I had to walk so I took the dog for a walk and between the engery drink, oxygen and exercise.
It got better.

However I felt so exhausted and went to bed and was so restless I cried. Didn't fall asleep until 130 am. Had to be to work this morning. Doc said predisone can make you restless so I have been taking that when I get up and the veramipil before bed. Maybe the combination of the predisone and the energy drink. I don't know. Very tired today but no pain. Thank god. And if I hear my husband say I am having migraines one more time I am going to punch him. Just to add that in. Doesn't understand what I am going through at all. Tries to be helpful but it gets me so annoyed.