Yeah... it's been on my wish list for the past 32 years or so... a new head plz, this one is a pain  :-?

Well anyways starting with obscure humor to introduce myself, as I'm getting set to face yet another night sleeping with the monster, therefore in a strange mood... never knowing for sure the outcome of the night.

I'm new here. I found out about this Web site a few years ago, I don't remember when, but got depressed after reading a few tales that sounded so much like the almost not human state I reached so many times in my life... and I never came back here until tonight.

I'm from Montreal, Québec (Canada), I'll soon turn 50. I suffered my first CH at age 18, and I first heard about cluster headache when my brother started to suffer the same at age about 42, that is when I was 33.

I tend to write a lot when I start... bare with me but if you're starting a headache, please stop now and read  me later !!

All these years, no doctor had gotten any information whatsoever it seems on CH in their studies...

All the worst tales told in your pages I've been through over and over (and still do) for all these years with absolutely no medication, just crawling an endless night across the floor, or sometimes quickly running to the toilet to vomit, or turning for hours in my bed moaning and screaming as if a sadistic torturer was playing into my right eye with a rusty screwdriver.

In the first years, I had X rays of my sinus taken, seen many doctors, and none even thought about refering me to a neurologist.  >:(

But since my condition is not chronic but episodic, after the cycle was through (3 to 8 weeks), I would just forget about it until it hits me again 6 to 24 months after.

Then I heard my nephew also suffered from the same rare (?) illness. But still, many years passed again (I'm not close to my nephew and my brother is the speechless type), untill I sat by my nephew at a family dinner. He was then studying nursing. I was going through an episode of night headaches and day headache hangover as I saw written here... same for me.

He noted down for me on a piece of paper the name of a couple medication, the one he takes regularly (he's chronic), Verapamil... and the name of the clinic in Montreal... La Clinique de la migraine, where I could easily be seen by a neurologist.

That was at my sister's birthday, so it was... 2007, yeah, that's july 2007.

It was very clear very fast for the neurologist I saw that I was an episodic CH... she prescribed me medications and.... OMG  miracle, I couldn't believe it... there is a light at the end of the tunnel.

So I have been an episodic CH case with absolutely no medication for 27 years. No need to give details, those who suffer CH know this is quite a journey.

Well medication is sometimes a miracle, but for that you need to be well organized, which I am not at all (you can guess when you know I spent 27 years without even being diagnosed officially lol).

Since I'm episodic and since I tend to forget all about CH between episodes... I often have neither any medication, neither any prescription when it hits... need to take an appointment with my neurologist, I'm out of town... Besides, they're very expensive even though we have national med care cutting the fees here.

Well I'm disorganized and tend anyways to retreat with myself with the beast, hiding even, so I don't scare too many people... The few who have seen me cluster headaching are still in shock after many years :-P

But that's also because... retreat... back with myself and my beast... I guess I'm getting close to the reason why I finally registered to this forum, in those 27 years (these? I'm french so idk),

I feel I'm getting quite obscure, but how else to describe such darkness I lived through so many times... suicide headaches... makes one think about the meaning of life for sure...

Here is what I have to say: after 27 years of CH with no help from science, I have developed some kind of a technique to surf through the painful nights, and I wanted to share it. It may help someone... maybe someone new to the CH world.

Funny thing is that CH is the short for our famous (has to be) hockey team here in Montreal. (this team has been a headache in recent years lol)

Well this technique is very simple but difficult to share: slowly massaging the affected areas (they changed over the years, it was my eye for a decade or more, but not anymore at all, mostly the neck, a precise spot behind the ear and temple... all on the right side (maybe half a new head would do? lol)
slowly massaging the affected areas while getting into some kind of meditation turned onto myself... not paying any attention to anything outside me, or very little. Deep breathing if necessary... the most important point here is to identify the moment when an annoying tickling is turning into a monster. If I miss the starting gun, It gets out of hand. Well it's difficult when you're sleeping, but it does wake me up slowly, and sometimes I tend to neglect the growing pain until it's too late. I had to learn to get straight up as soon as I start to wake up.

I was usually able to control ... probably 50% of the headaches, the other half ending in horrible uncontrollable pain.

But then I discovered Ice.

Ice is my savior. I need my ice block, real ice in plastic bags, not the plastic sealed ice packs... Since I live in Montreal and since episodes often hit in wintertime, ice or snow is available anywhere outside, but just 3 weeks ago I was so crippled by pain that I never found the courage to go down two stories to get to ice outside... I wasn't prepared, once again, and had no ice in my freezer.

For about 7 years, Ice was my only medicine. If I hit the monster in time with ice... no problem... within 20 minutes,  it goes back into its cave... leaving me free to go back to sleep. But it comes back. So these times were one hour a shot nights interrupted by 3 or 4 20minutes sessions on my stool in the kitchen.

Sitting down or standing up

I learned (it took a very long time) that horizontal position is to be avoided at all times if possible when in an episode of CH. I don't have a lazy-boy but that is the ideal bed for a CH person. I experienced it at my brother's place one Christmas. I refused the bed they were offering me and spent 3 days sleeping in the lazy-boy, half reclined. It's the ideal.

At home, I just sit in the darkened kitchen on a stool, holding the pack of ice on my temple and neck and trying to remained focused on myself.

With the ice, I was able to control most of my CH for 7-8 years (well say... maybe close to 80%), until I finally got meds.

But the medication (verapamil 2 X 360 mg daily), then lithium also, but I don't remember the dosage (I'm seeing my neurologist tomorrow) is not a total solution and CH still hit me, so I rely on my method, mostly. Where is my Ice? (a few Popsicles or Icicles... Mr Freeze helped me a few times with day crisis as they hit me away from my freezer)

My neurologist had also prescribed me a nasal spray for when the big one hits... 20$ a shot... and the pharmacists don't hold them in stock. She refused to prescribe me the pills my brother takes, god knows why...

I'll stop here for now and will be able to supply the other medication's name and dosage I take if anyone is interested as of tomorrow.

I'll note that, in all these years, the illness has taken new ways to hit me. For the past week, the Verapamil isn't sufficient anymore and every night is monster time again... but after 2 1/2-3 hours of sleep. Not one hour anymore it seems. And they are usually less painful and shorter to "ice down". But usually only... getting to bed is always a difficult decision after consulting with myself... but I know that if I don't sleep enough (6 hours at least), it will only get worst.

I hope my little introduction story wasn't too painful to read.
See you soon  :)

 

Welcome to the board. It sounds as if you are not only familiar with the beast, you have also found ways to tame it. There are a number of sufferer's here who have found ice to be a welcome intervention during a hit. For others, really hot water will do the trick. For me, it is neither. We are all different. I use O2, energy drinks, Migranal and trex as abortives. As a chronic and 35 year sufferer, I know (as do we all) how much the beast can interfere with both waking and sleeping patterns. I'm glad you have some relief. Stick around and contribute where you can. God bless. lance