I'm new to this board but I had suffered with CHs for some four years. I'm now 59, but onset occurred when I was about 54 years of age. I had smoked for about 35 years, one pack a day.

The first time I got one, it was a late-winter in mid-morning, I couldn't understand what could bring on such a PAINFUL headache. Anyway, I didn't know what they were and didn't know HOW to treat them. I started out with ice and aspirin - no help. It eventually went away after some two hours of pacing, etc. A couple of days later, I got another one, but near bedtime. Two nights later, another one. This is how I went through the first couple of weeks.

I remembered having severe headaches that wouldn't go away when I was in the service. They were caused by an abcessed tooth. So, I got a dental appointment. The x-rays showed nothing.

Next, I went to see my family doctor. I told him that I was having severe headaches, and told him about how I had already been to the dentist. I don't know if he knew what cluster headaches were, but he put me on something (sorry, don't remember the name of the drug, but it didn't work either). He set me up for an MRI, too. That showed nothing, either.  

Then came the end of my first episode, which I think lasted about a month. No relief, just 2 hours of pain about every other day or so.

My second episode happened about a year later. This is when they started occurring only at night, EVERY night, and almost always exactly 2 hours after I went to sleep. I mean, I could predict almost to the minute when I be awakened, and I was rarely disappointed. These  seemed to be far worse , painwise, than the first year's were. Some of these definetly rated KIPs of 10. One even a 10+ (I was pacing, banging, crying, wishing I were dead, all with snot running out of one side of my nose and half-blind, as my eyelid had completely closed, etc.). Nothing ever hurt THIS bad.  

One night, I had several CHs in a row, separated by an hour or so, and I decided to stay home from work the next day due to lack of sleep. This is where serendipity stepped in. I happened to be watching some program on TV about health and one of the topics was cluster headache. After listening to them describing the symptoms and some relief aids, I was on Cloud Nine; at least I knew what these things were called! Caffeine was a possible reliever.

Back to my doctor I went. I told him what I had learned, and he said that he had heard of them and that there were some possible remedies. The prescription things (including Imitrex) didn't work so well, but a couple of other things did. So, after a bit of experimentation, I came up with the following. At onset, I'd take a couple of Advil in the capsule form, a couple of Aleve, a couple of regular aspirin, and wash it all down with a couple of cans of Mountain Dew he caffeine), then apply a heating pad to my temple. This worked, after a fashion. It normally took 15-20 minutes to work. But you all know how much pain can be produced in that amount of time! After about two months of nightly CHs, they stopped. During this episode, I found out that alcohol was a trigger. Margaritas were a sure way to bring on a headache. I quit drinking altogether.

I also noticed that my blood pressure seemed to rise (though I never measured it during an attack - it could have been my imagination). What causes high blood pressure? Salt, of course! So I also quit using salt of any kind on my food. Did it help. Who knows?

The next year, the headaches started about the same time of the year (late February) but they became chronic. Every night, two hours after going to sleep - OWWWW! I was still using the same remedy. I read up on CH on the internet (don't think it was this site). It was suggested that oxygen might be helpful.

That summer, we were visiting my sister-in-law, who happened to have a lung condition which required her to breathe oxygen at night, and she had a machine. One night, I got a headache and asked her if I could try her oxygen. That worked almost instantly!

It was probably about this time that I began to sense when I was going to get a headache. Doesn't take long to recognize this, does it?

Still, the CHs weren't going away, and I went back to the doctor. He said that he knew that there was a headache clinic in town, and asked if I had ever gone there. I knew of no such place, so, of course, I went. Thank goodness!

I told the doctor about my syptoms and my remedy, and about how oxygen seemed to help. I told her that I thought I had cluster headache. She and another doctor examined me and said that I had five symptoms which, individually, would have suggested that I had CH. Now I had my diagnosis. What about a cure? She prescribed Verelan (verapamil) and melatonin, and oxygen. She may also have prescribed prednisone [she did -L], I just don't remember.

For the first couple of weeks, I was still getting nightly headaches, but the oxygen was an immediate cure. Then the CHs pretty much went away. I'd get one only once in awhile, but inhale the oxygen and they were gone!  I was still smoking.  I tried alcohol again. Bad choice - immediate headache. I went back to see her a few months later, and and we cut back on the strength of the Verelan and halved the melatonin, and this kept most of the headaches away.

About a year passed. I'm not going to tell you the whole story, but I had to have three stents put in arteries around my heart. One artery blocked 92-98% blocked, the other two 87-92% blocked. I quit smoking the night before the operation.

Since then, NO headaches. Not a single one! I can now consume alcohol, no headaches. I can eat salt, again. I can only say I THINK I'm cured. I'm still taking melatonin because I had bought a LOT of it on sale. No more Verelan, etc. Otherwise, I'm taking meds for the heart thing, but nothing else for CH.

I am no doctor.  But, in my case at least, it appears that CHs can be caused by lack of oxygen in the blood. In my case, poor circulation may have helped.

So, here's my suggestion, take it or leave it. If you smoke, QUIT. If that doesn't help, go have an EKG done, and a stress test. These things are FAR less painful than the headaches, and maybe it will work for you like it did for me.

PS Something has come to mind after reading some of the other postings - cold air.

But first of all, thanks to all who have given me such warm welcomes.

Now, to the cold air. As I said, I began getting episodic CHs in the late winter. Although it not that cold in the wintertime here in Lawrenceville, GA (an Atlanta burb), one of the things I'd do during an uninvited pain session would be to walk out on the deck and breathe in rapidly and deeply for as long as I could stand it before getting dizzy. This seemed to lessen the severity of the hit. PERHAPS this is the oxygen thing again, as cold air is more dense than hot air and, therefore, probably
contains more oxygen than hot air.

Also, after reading the thing about Ambien, something else suddenly pops into my mind. I had back surgery in 2001. This is before ANY of the headaches I now associate with CHs. Anyway, I was scheduled to leave the hospital around 11 AM. At 9:30 or so , a nurse came around to check on me and asked if I was OK. I told her that I was in a little pain, and she asked if I wanted ??? (sorry, I can't tell you the name of the drug, but it came in pill form) or a dose of morphine in the IV. I told her "Let's go with the ???" That pain reliever gave me the FIRST of what I now know to be cluster headaches. It took three shots of morphine to get rid of it. I went home at 5 PM.

I'm also fearful that I have jumped the gun by thinking that I'm "cured". After seeing how long some of you have suffered, my battles have been nothing but a skirmish in the 100 Years War, it seems.

Finally, if CH occurs in 69 of every 100,000 people around the world, there are more than 2.7 million sufferers out there. That's a lot of people who aren't on this Board!  

Larry, that's interesting for sure. I'm curious as to how long it's been now since you had a CH? I have often wondered about smoking and CH, especially since O2 is such a popular abortive for many. Of course there are non-smokers getting hit with CH's too, including my husband.

I suppose in the end it will never be one magic cure-all but sure glad that you're feeling pain-free!

Christy

Hi, Larry.  I am one of those non-smokers, queen of hearts mentioned.  I hope you have a long pain free period.

Welcome aboard.

Charlotte

It tastes to me like a distinction which we do not make here often enough: the difference between cluster as a primary headache disorder and cluster-LIKE headaches which are secondary to another disorder, here, a heart problem.

As a "primary" disorder we mean the CH stands alone as the disorder, not associated with, or caused by some other problem. Failing to make this distinction can lead to problems if you work to abort the cluster-LIKE symptoms and are not aware of the underlying real cause, therefore failing to treat that disorder.

In most cases, this is no a big deal but it can lead to difficulties in diagnosis and treatment, hence we need to think about this duality, at least in the diagnostic period.

I too am a non-smoker clusterhead.  I think it's interesting info. though.  Perhaps the increased blood flow helped out?

Non smoker here too! I quit 17 years ago!    Gusieppe thinks maybe we don't have CH since we don't smoke!  ;D  I've been thinkin' of takin' it up again.   What the heck! :P

Jeannie

Charlotte wrote on Feb 12^th, 2009 at 3:15pm:

Hi, Larry.  I am one of those non-smokers, queen of hearts mentioned.  I hope you have a long pain free period. Welcome aboard. Charlotte

I'll second that.  

I'm also a non-smoker, but did smoke 4 years ago and all I can say is that the CH have been reduced in cycle time, duration and intensity.  Quitting smoking didn't cure me though.  I'm still episodic for at least 2 cycles a year lasting for 2-4 weeks each cycle.  I'm glad you're pain free, but don't jump the gun.  Some folks are in remission for years before another cycle starts.  While you are in remission, enjoy life to the fullest.  I cherish each and every pain-free day.

Best of luck and welcome aboard.

Peace,
Chad

I quit being a big time smoker while doped up six years ago.  No, it didn't cure, but perhaps lessened the frequency/severity.  But quitting got rid of a bunch of issues that I no longer need to deal with!  You'll find several smoking threads, and a lot of opinions.

Enjoy the PF times!

OK.



        Challening. More assertive.. Coach Bill >:(

Glad to hear that you are pain free!  We LOVE to hear that.  I hope your remission is VERY long!

I, also, have three stents in me.  Unfortunately, they did not affect my clusters.  So, whatever it is that is giving you your painfree time, I am glad you are having it!

Chuck

QnHeartMM wrote on Feb 12^th, 2009 at 3:09pm:

Larry, that's interesting for sure. I'm curious as to how long it's been now since you had a CH? Christy

The 21st of March will mark 2 years since the stents were installed and two years since my last CH.

slhaas wrote on Feb 12^th, 2009 at 5:41pm:

I too am a non-smoker clusterhead.  I think it's interesting info. though.  Perhaps the increased blood flow helped out?

This is certainly what I believe. My wife said she noticed a BIG change in my coloration.

Bob Johnson wrote on Feb 12^th, 2009 at 3:17pm:

It tastes to me like a distinction which we do not make here often enough: the difference between cluster as a primary headache disorder and cluster-LIKE headaches which are secondary to another disorder, here, a heart problem. As a "primary" disorder we mean the CH stands alone as the disorder, not associated with, or caused by some other problem. Failing to make this distinction can lead to problems if you work to abort the cluster-LIKE symptoms and are not aware of the underlying real cause, therefore failing to treat that disorder. In most cases, this is no a big deal but it can lead to difficulties in diagnosis and treatment, hence we need to think about this duality, at least in the diagnostic period.

I basically agree with you. But, BELIEVE ME, I was having cluster headaches, not cluster-LIKE headaches. What I'm saying is that there appears to have been a link, that's all. But, how do you know whether the CHs you're having are ONLY secondary to the REAL problem when you don't know you have the REAL problem in the first place?

But, how do you know whether the CHs you're having are ONLY secondary to the REAL problem when you don't know you have the REAL problem in the first place?

One of the HUGE "pain's in the arse" about this condition. With its morphing ability you're never sure about cause and effect. I'm still convinced CH is a number of different "problems" all which have the same "effect" on that damned trigeminal nerve. Which would help to explain why 02 works for some and not others, why different meds have such varying degrees of success.

I believe your surgery helped to correct whatever was causing the CH's to trigger in your body. Enjoy the pain free time, may it last a lifetime!

Joe