It all started 3 years ago.

I was sleeping over at my girlfriends house (now my fiancée) when I woke up with the most severe throbbing in my temple that I have ever had. I was confused and was craddling my head in my right arm flopping back on forth on the bed. It was strange to me that when I was rubbing my temple where I felt the pain there felt like there was a cord in my temple that was not supposed to be there. I could trace the vein across my temple and could feel it twisting and turning down into the bast of my neck. I woke her with all my commotion and she gave me some Tylenol. I moved to the floor where I continued to roll to and fro until the aching and stabbing dulled to the point where I dosed off, man when that first attack was over it was like winning the lottery I felt so good, little did I know what the future had in store for me...

The next morning I thought to myself. Holy shit that was the most severe pain I have ever encountered. Pain at that level has a lasting impression.

The most pain I had been in before that was at the age of 11 when I broke my arm (Radius and Ulna) in the playground and the lower half of my arm slid back and was resting underneath the top half. That wasn't the painful part, the painful part was at the doctors office. They couldn't decide whether or not to do surgery. The doctor decided he was going to try and place it. I remember them waking me up, then asking my parents to leave the room because it wasn't something they suggested not be around. One doctor braced the lower half of my arm and pinned my elbow to the table. The other doctor proceeded grab my arm just below the wrist, and I felt my bones sliding and scarping along one another. Oh man did I ever scream. Painful enough to have been permanently put into the memory of my brain. Like I said, severe pain has a lasting impression.

The first headache was brutal, and I had another one a few days later. I talked to friends and family and we concluded it was from stress. A few months before I found out I was going to be a father. I had just started a new (real) job and was in the middle of buying a house. I assumed the combination of the 3 just caused my head to ache. Why wouldn't it right? We got into the house, baby was born and was getting stellar reviews at the new job. Still the headaches lingered...

I realized that when I described these headaches to friends and family they didn't quite understand the pain. I tried to explain the 'aura' that I felt, I could almost feel this weird lingering around my head (later discovering thats what is called the 'shadow') and they just looked at me like I was high.

Well the snow was finally disappearing on the Wasatch Mountain range and with it so did my headaches. I felt like a new man. I could drink alcohol with my friends again. I felt like I could actually concentrate once more. I thought it was over. I thought to myself, well hell I guess I know what to look forward to at my midlife crisis, but boy was I ever wrong.

Next spring came along. My life was great. I had a beautiful healthy daughter, had the nice little house with the hardwood floors, had the gorgeous lady to come home to and cook fine meals on my BBQ. Then, in the middle of the night I awoke with the demon. Throbbing pulsating vein piercing my eye, neck & temple. WTF!

At that point I hit the internet. Researching headache sites and stumbled across the definition of cluster headaches. When i read the definition it was EXACTLY what I was experiencing. I kept reading and discovered not only is there no relief for these headaches, but they have no idea what causes them and for what reasons. Doomed! I talked with a friend at work who suffers from headaches, not cluster, but headaches none the less and he let me know of his doctor he had been going to who specialized in headaches. I call them up and they require I see the in house family practice doctor first and be 'recommended' to the neurology specialist and that it is going to be 45 days before I can come in just to see the family practice to be referred to the specialist. I signed up and of course by the time I went to doctor my cycle had ended he said this:

"The specialist is just going to recommend a cat scan to make sure its not some sort of growth or tumor. If they don't find anything, and from looking at you, your healthy and I doubt there is anything like that."

He gave me a prescription to something that I never got filled, told me it may or may not help. You see I am the kind of person that has always held the mentality that prescription drugs are Satan spawn. Hell I won't even take advil. I feel that my body has been great at dealing with pain and sickness on its own for 24 years I don't need any man-made narcotics thrown into my body. Even when I had my snowboarding injury and required surgery I just sold the Lora-tabs I was prescribed because I didn't feel they were necessary. I should mention I did smoke recreational  marijuana at the time so that may have been a good enough anesthetic. I know there is irony in the fact I wouldn't take any man made drugs but smoked natural ones, but thats a different story.

To be completely caught up, I felt the shadows come back about a month ago, and the headaches have started again and have been going now for a few weeks. I have come across this site once or twice before in the past, but never signed up. I am getting older and I feel that there will be some comfort here that seems would be nice. The simple fact of people who actually know how I feel, instead of sympathizers who say "Oh Man, headaches are the worst." These people will never understand.

Thats my story and I am sticking to it. Now on to some of the details and notes about my little demon.

• Headaches started at night.
• Headaches have moved to heavy shadows, even light headaches during the day, then the demon comes out around 7-9pm.
• Haven't had any wake-up headaches this time around.
• This one is hard to explain, during and post headache, my right nasal passage (side where my demon is) is like linked to a specific part of my brain. During and post headaches when I take large breaths through my nostrils I can feel cool air almost piercing my brain, does this sound familiar or make sense?
• Can usually divert headaches with a large coke (i hate cola but hell it works) or a large cup of coffee, but we all know that demon is coming sooner or later.
• I almost feel like if I could just pop my neck just right it would release the pressure of the vein in my skull, though its never happend...

Thanks for listening to my story and I enjoy spending some time to on these forums in the future, maybe we can work on a cure.

-Tyler aka Beta

Hey Tyler,

I'm Brad...also a newbie and just learning to live with this monster. I dipped in here a few days ago and luckily caught the ear of a couple of really helpful, very switched on, long time members, Joe & Bejeeber.

I've pasted my post and their replies below. Their advice works mate. I'm in Vietnam at the moment without any medication.
It's next to impossible to find...but i did get my hands on oxygen and am managing.
I'd try bejeeber's approach if i were you as well...
Sure wish you all the very best...
Brad.

Re: Newbies. Help us...help you
Reply #4 - Mar 6th, 2011 at 12:30am      First of all I'd like to say thanks to all of you for being here. It's really fantastic to find a supportive group of folks that know all about this monster. It was very daunting to come down with headaches that, 1: I dont really understand and 2: didn't, at the onset, think I would survive. It really seemed to me that anything that could possibly pack a wallop like that must be lethal or at the very least, permanently debilitating. I thought I was having an aneurysm or stroke or who knows what but I didn't think I would be getting up off the floor on my own steam....not ever.

My name is Brad. I'm 46, caucasian, work in Vietnam and live in Bali. I had my first real bout with cluster headaches in Singapore exactly 2 years ago. I was terrified when I got the first few. They lasted for a couple of hours each. They took my by storm, blasted me out of bed and had me writhing on the floor in a matter of minutes and left me just as fast...obviously a little worse for wear. I would have gone to the ER but couldn't imagine having to deal with ambulances, paramedics and doctors and the whole process of checking into a hospital alone in a foreign country. I seriously thought I was dying anyway and wanted to do it alone & on my own terms. When it was over I couldn't believe what had just happened. More to the point, I couldn't believe that I was OK again. Seriously??? WTF??? I found a neurologist that night on the internet and was waiting for him as his office opened the following morning. I told him that I'd just had a headache that hurt WAY more than a headache should. He took me onboard immediately and sent me for an MRI that revealed nothing unusual. After a bit of Q&A he told me I am suffering from cluster headaches. Until that very moment I had no idea that such a thing even existed. I was given a big bag of steroids and single shot self injection kits and sent on my merry way. The typical ruff-neck mentality in me never had any compassion for migrain sufferers and used to joke that it was all in their heads. Certainly wish I could take that back now. The headaches came twice a day for the next 6 weeks but the medication made them, let's say, just doable.

So what brings me here today, 2 years on, is to ask some advice on how to get thru the next round...with no medication and no oxygen. Nothing. Logistically speaking, I'm in a terrible situation. I'm the captain of an offshore drilling rig. I'm writing from the middle of the south china sea, miles off the coast of the mekong delta. I'm going to be here for 3 more weeks, like it or not. The very troubling thing is that last night at 2:00 am, for the first time in 2 years,  I got knocked out of bed by a cluster headache. What I gather from all the information out there is that this is not going away for a while and is only going to get worse.
I have some folks in Ho Chi Minh City combing the pharmacies for imitrex at the moment but so far they aren't having any luck and seemingly it is a controlled drug in Vietnam and not easy to get.

I'd like to know if there is any way to really mentally prepare for a cluster headache? Ive seen people have surgery with no anesthetic by simply getting themselves in the right frame of mind before the procedure, I believe thru meditation or self hypnosis. Does anyone out there know some of these techniques? Given that it's my only option at the moment, I'd sure like to think it's possible. 

Thanks again to all of you out there. Lovely to see people with this outrageous affliction networking and helping each other along.

With My Warmest Regards,
Brad Fitzgerald.


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Guiseppi
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Re: Newbies. Help us...help you
Reply #5 - Mar 6th, 2011 at 9:15am    Since you're getting hit at night, see if you can score some melatonin. An over the counter sleep aid here in the states. Start with 9 mg about 30 minutes before you go to sleep. Helps many avoid the night time terrors. You may have to adjust dosing, give it a few nights.

Since you're on a drilling rig, I suspect you have some oxy acetelyne welding outfits somewhere on that rig. Use that oxygen. When you feel the attack starting, immediately start breathing pure 02. The key is to get nothing but pure oxygen to your lungs, preferably at a breathing rate high enough for hyper ventilation. I abort attacks in about 6-8 minutes that way. Use the welding rig for now, obviously do NOT turn on the acetylene, only the 02, and huff off of that.

Then read this link to learn various ways to set yourself up with 02. On or off cycle I have 6 E-Tanks in my garage so I'm NEVER withou 02.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Have your buddies grab you some energy drinks, Monster, Rock Star, Red Bull, any containing caffiene and taurine. Chugged at the first sign of a hit many can abort or reduce the intensity of a hit.

Avoid alcohol, a very common trigger for many when on cycle. Go to a freezer when you're getting hit, sucking ice cold air thru the nostril on my affected side will reduce the intensity of my pain. In a pinch I've used the ac vents in my car with the ac on max. Ice packs on my neck and head help too.

Joe
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Re: Newbies. Help us...help you
Reply #6 - Mar 6th, 2011 at 8:02pm      Cheers Joe...you're a legend. Never considered the welding shop for O2. There's heaps there. Your last name isn't  McGyver is it? I've got a mate here that has some sleeping pils, not melatonin though...I think it's soma or something like that. Prescription stuff. We've got a huge walk in freezer in the galley that stays at minus 20. Lots of room to thrash around in there. The rig is dry, no booze out here even if I was inclined to neck a jar or 2. Appreciate the heads up on the trigger though Pal. Can't thank you enough for your reply. No doubt it's going to make the next few weeks way more tolerable. All the best to you Joe.
Brad.
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Re: Newbies. Help us...help you
Reply #7 - Mar 6th, 2011 at 8:44pm    Lucky that Joe piped in because yes he is a legend, and you got an earful of the best advice around!

I'm in agreement with the O2, freezing air and everything else mentioned.

Melatonin actually appears to do something to prevent the attacks for some people, unlike other sleeping pills.

If there's any delay with getting a proper mask for the O2, I can tell you I've aborted hits with freezing air before - just get in that freezer right at onset, breathe deeply, and you might even want to have ice cubes in your mouth - especially on the cluster side - while you're in there.

Here's a link with some welding O2 regulator info: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

You may also want  to check out the clusterbusters route if Rivea Corymbosa seeds for instance happen to be legal and obtainable there (they are legal to mail order and possess in The US, UK, etc.). Some people are knocking out entire episodes in this way with very short lived side effects.

Here are a couple links pertaining to that subject:
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

We all know the pain and wish you didn't have the need to seek out this site but it has been a lifesaver to me (and so many others)!  Anybody who advocates torture to extract information has never been in unbearable pain for any length of time. I've had attacks during which I'd gladly sell my soul to get any relief.
All the information presented by the other (and more experienced) members is spot on and has helped me tremendously! 
I haven't yet tried the Cluster Busters approach but am looking into it for next cycle 
The Oxygen helped me stretch out my supply of Imitrex so I never felt the need to go over the two dose daily max (we differ in our opinions on drugs but decades ago when it was the only thing available to me, Imitrex did save my life).
Welcome to the board and here's hoping you have many pain free days!
-Gary

Beta wrote on Mar 10^th, 2011 at 1:26pm:


Hi Tyler - welcome to the boobyhatch! 

Lotsa CH'ers who don't have a prescription from a doctor for obtaining O2 from a medical supply place are just popping over to the local welding supply place and getting the same O2 there without prescription. Cheap.

And for choosing supplements to take there's a very pertinent thread right now that you'll probably wanna take a look at:Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

You came to the right place (well this and the clusterbusters.com message board). Here's to you finding some significant relief and soon. 

Guiseppi wrote on Mar 10^th, 2011 at 6:01pm:


Whoa - wait a minute, you can't do that!  WTF are we going to do here without you guiding the incoming CH'ers? 

Well we can hope you'll have a good smart phone or some such thing with you so you can pipe in here and do some triage etc. in the evenings.....

Buy the beach house, but not as a way to avoid CHs. If it were that simple we'd all be living on a beach. I live about 200 metres from the sea not far above sea level and I still get CHs.

Guiseppi wrote on Mar 10^th, 2011 at 6:01pm:

Impressive, Joe! How long will that take you? Are you part of a larger group?
Yes, please give updates on this!
-Gary

'm traveling with a group of 16. I'll post a link to our blog in the genral section before i leave! I really appreciate the well wishes!

Joe

Good luck Beta!  Let us all know how well it goes for you!

Way cool for the open invite Gruvedawg!  If for some reason you find a need to head to Central Ohio give me a heads up! (It's not so bad here in the Spring/Summer/Fall when the sun re-appears! )

Hi to gruvedawg and Beta,
I will say a belated welcome to you, because it seems you are 'on the page'
and settling in nicely!

Quote:
Quote:

This is Music to our ears here guys!
Positive attitude is half of our personal battle against the beast!

Respect

Gary

Big congrats on the busting success so far Tyler!!

I think I can confidently say that inducing an attack when busting is fortunately NOT necessary. 

Sorry for the delayed response here about the welding 02 - the welding place won't have masks and you don't want to actually volunteer to them that you'll be using the O2 for something other than welding. The non rebreather type mask that we require for good CH aborts is hard to find locally. Folks have been ordering one online here:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

I'm sorry I don't know for absolute certain about welding O2 places and regulators. I think you'll likely need to order one of those too - hopefully someone definitively in the know will be along to advise about that.

Won't it be nice though if you won't even need any O2! 

I'm just trying to be a pain. But opium and morphine are completely natural. Morphine is  5-15% of what's in opium. Rhubarb leaves are very natural and very very poison. We sometimes get too hung up on "The natural" Man has made some great synthetic meds that save and extend countless lives. We use only materials that are on the earth and modify or mix them. All living organisms do this in there bodies. ie Snakes venom, Skunk Stink bombs etc/ Smoking anything is very very unnatural. You will never see an animal ever smoke anything even if it could. If "you need the weed" eat it. THC is absorbed in the stomach you just don't get a quick high or maybe just bit a high but if you use it for medicine that's not a bad thing ,is it? I'm just trying to give some info out. And just give you a bit of mind messing. I hope you don't take it too seriously, that's not how I mean it.   Just an FYI  MikeS