I have been getting clusters since I was 19 (20 years ago). I have one person I personally know who actually also has suffered from Clusters and he is 45 years old. He said when he was about 42 he had his last cycle and has not had one since. Can people grow out of a cycle as they get older?

I reckon I have done, old mate, and my cycles are now so short and easy I should really think about deleting my profile here at ch.com.

Mind you, even if we're completely wrong about growing out of it, it's such a beautiful thought and dream that gives us hope.

Let's all hope together.

Superirish 25 wrote,
I have one person I personally know who actually also has suffered from Clusters and he is 45 years old. He said when he was about 42 he had his last cycle and has not had one since

Long breaks between episodes is quite common.
I've read of folk going 7yrs, and longer, then
for no rhyme or reason the  [smiley=evil.gif] rears his ugly head.

Personally, I don't think you ever grow out of them

Hoppy

AussieBrian wrote on Jan 17^th, 2015 at 10:45pm:

I reckon I have done, old mate, and my cycles are now so short and easy I should really think about....having another beer. deleting my profile here at ch.com. Mind you, even if we're completely wrong about growing out of it, it's such a beautiful thought and dream that gives us hope. Let's all hope together.

There...fixed it for ya....you can check out...but ya can never leave...this is FAMILY!

[smiley=sayyes.gif] [smiley=beer.gif]

Hoppy agrees.

Me too. You must never leave us Brian.

I grew into mine. Didn't start till I was 57.

I never meant it like that, dinkum, and now I'm completely embarrassed.

My hope, my faith and my true belief is that we really do grow out of it.

A wonderful future for us all and a dream we can cling to.

Let's simply share a dream to make it come true.

Had my last cycle at age 54, 10 years ago.  It was my longest cycle at 5 months, 3 to 8 attacks/day.  Went out with great fanfare!!!!

G'day Bob,
I was wondering, have you been taking a preventative
for the past 10yrs ?

Hoppy.

Not taking any medication.  I started ch at age 20.  Would get a cycle every 8-9 months, last 4-6 weeks with 2-3 attacks/day.  At age 40 the remission periods started to get longer but so did the cycle when they came.  At age 54, after a 2 1/2 year remission, that long cycle hit and that was the end of them.  I'm confident I'll never have another.

Did you make any life style changes since your last cycle ?

I hope one can grow out of them.  I am 46 and have been episodic since 21 but generally speaking with time the remissions get longer and the pain/frequency less severe (though the cycles themselves lasting longer).  I've just had a 3.5 year remission, a record for me.  But the beast is back a-knocking.

I like what AussieBrian said.  A nice thought.  Personally I feel that the flavour of the condition is changing over time with me, and the edge is coming off a bit.  Whether this is the improved treatment, management or psychological or something else, who knows.  It wouldnt totally shock me if they just stopped completely, but I've never seriously entertained the thought (good thing too as I'd be quite disappointed right now...)

Quote:

Did you make any life style changes since your last cycle ?

I completely stopped drinking alcohol at age 40, that's when my remissions started to lengthen.  I retired at age 58 1/2 but I don't think my stress level has gone down because since then I have moved twice, sold the family home and built a new one.

I'm hoping that I have outgrown them.  They started at age 16; and like Bob, I got longer cluster cycles and remission periods during my 40s.  Also like Bob, I quit drinking alcohol entirely, at age 44.

Last attack in 2009.  I'm 54 now, and take no preventives.  Haven't thrown away the triptans, and still have 20 cylinders of O2 standing by, just in case.

Dennis

G'day Bob,
Again it would seem alcohol plays a major part as a trigger  in most of us myself included. Maybe those of you who drink alcoholic drinks should try to avoid them, like Bob and Dennis did, to see if that keeps the [smiley=evil.gif] at
bay for you.

Cheers, Hoppy.

I sure hope to grow out of them some day.  I'm 54 and started getting cycles at 24, so 3 decades of them  >:(

I can say that the severity has diminished in the last 10 years, and the remissions are longer.  I just came back into cycle, it's been2 years I think, and so far nothing over a 5.  And that is a whole lot better than it used to be.  And alcohol doesn't seem to be the automatic trigger it usually is...

Good luck!

Really nice to read some of these positive experiences.  10 years ago I asked a similar question and was told I will have it all my life.  Regardless, they also seem to get easier and longer remissions for many (most?) with time. 

Perhaps some minor comfort for the younger, recently diagnosed sufferers. 

Would be an interesting scientific study (if some clinical researchers are reading this).  Factoring in lifestyle, climate, therapy history, use of psychedelics etc etc. 

It is a known phenomenon that some CHers go into complete remission when they get older.

As for me - I'm 43 now, living with the beast since I was 11, during which I was chronic, episodic and also had periods of years in which I had few attacks or none. In the past decade my remissions suddenly became shorter and my cycles got longer 2-3 weeks, than 4-5 and my last cycle (9/2014) was 9 weeks long.

Completely stopped drinking alcohol in 2010. Hardly made a noticeable change.

On the other hand, my headaches and cycles are more manageable now. After mastering my triggers and the use of triptans, O2, energy drinks etc. and with a little help from the D3 Regimen, even my 9-week cycle was relatively easy to survive.

I do believe complete remission is possible, though.

Thanks for the feedback on this topic, gives me some hope!

I'm 70 and the beast still jumps ugly on me if I stop the vitamin D3 for a week...

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V/R, Batch

Hey Batch, Have you been able to drink alcohol the whole time you have been doing the D3 Regimem? Or if you drink will it still trigger some sport of pain?

Cheers.

I sure hope to out grow these attacks. After 40 years of episodic and chronic I'm getting darn sick of them.


Hey Batch, how'd you get a picture of my first wife?

My last cycle ended January 2013, age 69, no episodes
since then, and I put it all down to the vitamin D remedy,
and to answer your  :question EL, for me, I've been
drinking alcohol for the past two years with not sight
nor sound of the  [smiley=evil.gif] prior to that, alcohol
was one of my main triggers.

Cheers, Hoppy.

I'm a doctor new to web site and I think you all are nuts until my six weeks of hell begins each year. I think of the verse "If your eye offends thee, pluck it out." I'm down with that. As a surgeon, I think I can maybe pull it off at home. I wonder if anyone at work would notice the next morning.
Thanks and I look forward to battling the demon with you.

The Big Operator wrote on Jan 28^th, 2015 at 8:49pm:

...new to web site and I think you all are nuts...

Of course we're nuts, and this is the biggest unfenced lunatic asylum outside of Capitol Hill!

Do you as a doctor believe any sane person could continue living with this dread disease?

Of course not, so welcome home, and tell us how we can help.

I am enjoying your scientific and non-scientific material very much. It's 4 am and I'm here with guess who. Your warped sense of humor still made me smile in the middle of it all. Thanks.

Ooooooooh  Big O, can you take your work tools home. I have a serrated kitchen knife on standby, and only my better judgment keeps it in the drawer. No need for anaesthetic as the extra pain would'nt be noticeable.

Seriously though,welcome to the family. Are you new to the condition or have you been a CHer for a while. Tell us a bit more about yourself, where in the world you live, and what meds you have and how they work for you. I'm sure we can all help each other.
Maz.

I am 63 yo and started 5 years ago. I embarrassed myself with my antics but see that everyone acts crazy. My neurologist has been great but as no cure in sight, if someone told me to take my clothes off and howl at the moon I would try it. I have 6 week stents each year. No help with mega-steroids or Verapamil or melatonin. Imitrex and O2 are life savers. Literally. I'm planning to try Vit D3.
Speaking of taking my clothes off and howling at the moon, I must admit I tried that once. It didn't help my CH but the neighbors seemed much intrigued. The police were less engaging however.

Hey there Big Operator,
I only checked in here a few weeks ago myself.

Wellcome to the Hotel Califiornia.You can stab it with your steely knives, but you just can't kill the Beast... And you can never leave.

Maybe a bunch of nutters, but the best bunch of nutters I've had the privelage to meet.

Keep well, keep in touch.
Peter.

Sadly there is no cure, but the condition is perfectly controllable. Imitrex and 02 are the best abortives there are. Send off a PM to Batch about the D3. He's a great guy and will tell you all you need to know.
Maz.

Thanks. Still trying to find out how Hotel California got to Tennessee.

Howling at the moon has been done before as well as, swinging the dead chicken over your head, vinegar sponge bath, the always appreciated putting chunks of blucheese in your armpits and tobasco under the tongue.  May want to try peeling an apple and leaving it on the nightstand while you sleep, then eat that well browned thing in the morning.  The presenter claimed it worked well!

Big O,
Hotel California is just my metaphor for this painful place we all live in.
Though the Eagles originally wrote the song about drug addiction, to me a lot af the lyrics apply to CH.
Anyway, just my weird mind, I guess.
Be well.
Peter.

Big O,

You seem to still have your sense of humor intact.  I suspect you might really enjoy reading this thread as much as I did: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Mark

From the archives, for the Big O and others, in the hope it helps -


We have a hypothalamus and, oh, but for the life of us,
It plays up, stays up, breaks up and wakes us up.
Little hypothalamus, big like hippopotamus,
It must’ve fostered cluster and you’re busted down to hell with us.

Medication, meditation, seditation, tried the lot.
Lithium and calcium, lidocaine, tried smoking pot.
Caffergotcha, melatonin, teeth pulled, stop your moaning,
Accupuncture, coca cola, anything to stop the rot.

Hot packs, cold packs, predni-poison, dopey-max,
Ibuprofen and religion, snorted mustard, visited quacks.
Imitrex and quick sex, goodness knows what hex is next,
Don’t tell us, hypothalamus, we all must learn to relax.

Hoo-doo, voo-doo, kudzu, verapomil,
Boo-hoo, no O2. Like you, I can’t stand still.
Head-banging til it’s bleeding. Gimme strength, it’s all I’m needing,
Pills chill my thrills, hypothalamus, I’m filled with the will to kill.

So, hypothalamus, tell us tales we’ll all believe,
Why you swipe at all the lot of us with a pain we can’t relieve.
Did you have a lousy childhood? Dad a thug, your mother no good,
Or are you just a nasty basket who deceives to achieve?

Ha, we’ve got you, hypothalamus! Feisty beastie that you be.
We’ve seen you beat and cheat us, now we see your destiny.
We suffer rough and tough, so stuff your bluff we’ve had enough,
I’ve now got lots of friends, it’s no longer just thee and me.

Really hoping not to jinx myself, but CH free for two years after dancing with them for 30 years...

My secret? I'm fairly certain it was when I quit smoking that helped. Makes sense to me because I used O2 for an abortive. Logic tells me that if O2 worked, it was a blood oxygen issue causing the CHs.

I'm now able to enjoy many things I had to forego for many years, namely craft beers.

I know those friggin' headaches hurt like heck. I wish you all pain free days and nights.

Interesting point.. Been thinking about that one on and off myself for some time.
I did some research into the link between smoking and CH and found nothing to suggest a link. Also, why would all long term smokers not have the problem? My Father, for example, has been smoking since he was a young lad (he's 83 now) and never had any kind of headaches.
Anybody out there got views on this subject?
Keep well,
Peter.

18% of Americans smoke.
50% of clusterheads smoke.

Not everyone who smokes gets lung cancer.
Not everyone who smokes gets cluster headaches.

Hi Backstage, research I have seen says that quitting smoking does not make any difference.  A while back I cut down my smoking drastically from 25 to about 4 a day, and after about a week I went into one of the worst cycles I've ever had. People who have never smoked, even children and babies get CH. It's possible that you are having an extended remission, although I hope I am wrong and you are right. If it's working for you then stick with it. Giving up can only improve your health.

J Headache Pain. 2013 Jun 6;14(1):48.
Impact of continuing or quitting smoking on episodic cluster headache: a pilot survey.
Ferrari A, Zappaterra M, Righi F, Ciccarese M, Tiraferri I, Pini LA, Guerzoni S, Cainazzo MM.
SourceHeadache and Drug Abuse Inter-Department Research Centre, Division of Toxicology and Clinical Pharmacology, University of Modena and Reggio Emilia- Policlinico, Largo del Pozzo, 71-41100 Modena, Italy. anna.ferrari@unimore.it.

Abstract
BACKGROUND: The majority of patients suffering from cluster headache (CH) are smokers and it has been suggested that smoking may trigger the development of CH. The aim of this pilot survey was to describe: 1. the differences between current, former, and never smokers CH patients; 2. if smoking changed during an active cluster period; 3. if CH changed after quitting.

RESULTS: Among a total of 200 patients surveyed (172 males, 28 females; mean age ± SD: 48.41 ± 12 years) there were 60%, 21%, and 19% of current, former, and never smokers, respectively. Current smokers reported longer active periods (12.38 ± 10 weeks) and a higher maximum number of attacks per day (3.38 ± 1) compared to never smoker CH patients (5.68 ± 4 weeks, P <0.05 and 2.47 ± 1, P <0.05, respectively). During the active period most of the patients stated to decrease (45.7%) or not to change (45.7%) the number of cigarettes smoked. Among those who decreased smoking, most (83.8%) reported that they had less desire to smoke. After quitting, the majority of former smokers stated that their headache had not changed.

CONCLUSIONS: PATIENTS WITH EPISODIC CH WHO ARE ALSO SMOKERS APPEAR TO HAVE A MORE SEVERE FORM OF THE DISORDER. HOWEVER, IT IS UNLIKELY THAT BETWEEN CH AND SMOKING THERE IS A CAUSAL RELATIONSHIP, AS CH PATIENTS RARELY IMPROVE QUITTING SMOKING.

PMID:23742010[PubMed]



 

I had my first episode at 15. First time I saw a Dr that put a name to it was in my mid-20s. Up to my early 40s I'd have an episode every two or three years and they have since spaced out more.  Turned 50 in December and quit drinking and smoking. New episode started last week after six years remission.  I never found either cigs or drink to be triggers for me, and this time I took it as a sign I should pick them back up again.  I actually have my strongest cravings for a cigarette when I'm in the grips of a CH.

Doc,
I agree with Brian.. of course we're nutz.. but welcome to the "family". And we're the best bunch of nuts you'll ever meet.

Check with Batch on the D3 regimen. It's really helping a lot of us.

And keep the O2 handy (check on the left for O2 info). This is the best city in the world for help cause we've all been there (or are there) and know what you're going thru..  :-*