A few years ago, I stopped actually expecting gifts or celebrations for my birthday. This year, however, I was given the gift of shadows. My birthday was yesterday, and all day I had shadows. Today, i had them, one was really bad and i thought I was in for a full attack.

I consider myself VERY lucky to be only episodic. I don't have them ever single day. just a few months, sometimes 6 months, out of a year. The problem with that,  and i know this sounds CRAZY, but sometimes, i totally forget about my headaches.

Yesterday I was at work talking to a customer, and that shadow hit me. All of a sudden i was terrified. freaking out and about to cry. Maybe i didn't REALLY forget about them, but they were on the back burner, if you will.

I know they are coming. I only get shadows when I'm on my "cycle" And I'm afraid to go to sleep tonight. so instead, I'm here, posting, again.

I guess my question to everyone (episodic clusterheads) :

Do you almost forget? Or not believe how bad they are sometimes? 

I think your mind sugar coats the pain after you have been away from it for any length of time,its a way for it to defend itself by thinking the pain really wasnt 'that' bad then you wont worry all the time. I went for about 6 weeks without an attack then BAM out of the blue got a pretty brutal one a couple of weeks ago and I was shocked how much it hurt really astounded like I had never had one before.Now Im starting to think it probably really wasnt that bad :},it couldnt have been right?

I've lived 35 years in the State of Denial where every day is a new adventure with only a happy ending.

It's a wonderful, wonderful place and everyone is welcome.

My stock reply to questions of this nature is: Don't try and predict the future. The attempt will serve to increase your anxiety, discomfort, hoplessness.

We do our best by having an effective treatment plan ready to put into action and then do our best to live a "normal" life without constantly looking over our shoulder to see if the shadow (or full blown attack)  is sneakikng up.

I know what you mean.

I am 3 weeks into a cycle after a 3 year remission. My longest break ever. I was beginning to think I was done for good. Then I woke up three weeks ago at 12:30 am in a fog of "WTF is this"? It took about 2 minutes before I was awake enough to put it all together and realize I was really having a genuine CH attack. Usually I have a few shadows or some kind of warning for a few days but this time it was a full blown k7 right out of the gate. It was a shock to the system.

After that is was like the movie "It" when the adult children got the phone call and suddenly remember the terror from their childhood in a flood. I knew exactly what to do and where everything I needed was and I had the mask on, sucking O2 in minutes.

You do forget on the surface but deep down the mind still remembers.

I never forget. I haven't been diagnosed by a doctor, but I know these are cluster headaches that have plagued me off and on for 6 years.

You know what one of the hardest things for me is? Telling people I get cluster headaches and having them tell me "Oh, well, just take some advil or tylenol"

....but we all know it's not that easy, and typically people never understand what they are or it's a pain in the ass trying to convince someone you're going through a pretty shitty experience.

Hoppy wrote on Apr 29^th, 2014 at 11:44pm:


I was never "properly diagnosed" either.  I saw a neuro for years that thought I had really bad migraines, but it didn't add up since I knew people who had migraines and it didn't really sound the same at all.  One day he was writing a letter to my insurance company and he wrote migraines with cluster like symptoms.  That was the first i ever heard of "clusters".  I came home, hit the internet and found this site.  It was like reading my biography, where I never felt I matched a migraine diagnosis, the description of cluster headaches fit like a glove.  I made an appointment with a new neuro, told him I had cluster headaches and he agreed, that I guess was my proper diagnosis

Hoppy wrote on Apr 30^th, 2014 at 2:27am:


I have not; though I intend to pretty soon during this cycle. The previous times I had CHs I was not insured, so getting any sort of imaging tests done would have cost me an arm and a leg.

But, like Jason said, the symptoms fit exactly to the description of a cluster headache.

There are many other accompanying symptoms that come with other issues that mimic cluster headaches that I don't exhibit, so it's just a very educated guess.

Hoppy wrote on Apr 30^th, 2014 at 4:23pm:


I bare down and deal with it. Usually rolling around in my bed, banging my head on the head board. They last about 30 mins.

Taken the cluster quiz, still fit right in.

Forgot about them last year after about a year of remission.  Then ran into this site again by chance and browsed a bit all while thinking....God that would suck if I started those again. And I sh*t you not...the next day...full blown kip 10 to start a 5 month cycle.

You may forget...but you sure as hell gonna remember!