Rob wrote,
I have read and heard from neurologists that there is an end in site with duration. I am 41 years now and things have drastically improved but just doesn't seem to want to go away, The end is in site.

My  :question is. Has anyone become CH free as you've
grown older. Mine started when i was 27.Still with me, age 70, 43yrs. I started the vitamin D3 regime. I'm now CH free.

Hoppy.   

Mine didn't start till I was 57.  63 now.

I was 55 when mine started..66 now. I always thought CH started when one was young but my neuro says most of his sufferers were past 50 when they started.

Judy

Hi Maz & Judy,
You've got me curious. Did you suffer from Migraine
Headaches before the CH's started?

Hoppy.

Hi Hoppy
No. I often had ordinary headaches - more often than most people, but could always take care of them with 2 or 3 asprins. There were 2 occasions when I was a child that may have been migraine. Once when we were on holiday in the north of England visiting grandparents, and once when my teacher could see something was wrong and sent me home from school, but on both occasions I was only 9 or 10 years old. Other than that, no migraines.
Maz.

No migraine here..just the 'monthly' girl headache. They could be pretty bad but an advil and pepsi usually took care of them. I did get a lot of barometer headaches. My sister however gets migraines.

Hi Maz & Judy,
From what i've read, CH's normally present themselves when
your between the age 25-35. But, i've also read, neuros say
most CH's in men start at age 50yrs. So with yours starting
so late in life, you really have to wonder, WHY.

Hoppy. [smiley=confused.gif]

It would be interesting to know the proportion of women who start late. I have met a young woman - 28 now, who started when she was pregnant about 6 years ago. Perhaps for us it's a girl thing - hormone changes or something. That doesn't explain the male sufferers though.
  I just thank God I've only had a short time of this thing and was able to enjoy bringing up my children. 
Maybe if one particular neuro has, by coincidence, only seen younger patients, and another has only seen older ones it would explain the contradiction. After all, none of them see many. My neuro said I was his second in his whole career, and he's older than me.  Does that make sense?
Maz.

I see what you mean Maz...my neuro has 5 chronic CH patients and the rest are episodic. Didn't think to ask him how many episodic and what sex like a dummy. He's been treating CH for many years and did say most of his patients started CH in their 40's or 50's. I love him because if you are in cycle and call for an appt..he sees you within a day.

I've taken estrogen since my 40's (now 66) and I asked him if I should stop. He said it had no bearing on my CH.

Sounds like someone needs to start a survey!

Judy

Judy, you are lucky to be able to see your neuro so quickly. Here in the UK you can't see a specialist without a referal from your GP, and it's harder to see a GP than it is to get an audience with the queen !!!  I have a neuro appt. on 16th Jan - the first I've been able to get since Feb 14th last year. I'm fully expecting to get blasted for taking the D3 (one doctor called it an old wives tale I'd found on the internet), but I've had more help from this site than any doctor, and I shall tell him so. When they are so unavailable, they can hardly blame you for getting help where you can. Besides, the D3 seems to be working, and the meds he prescribed didn't. Luckily my GP, when I can get to see her, is open to suggestions and has no objections to it. I found out about sumatriptan injections for myself, and asked her for it. But other than that I have never been offered any of the drugs I've read so much about here, or oxygen. Seems I have to do my own research and treat myself.
I guess in a way we are lucky here too though. At least we don't have to pay, or worry about insurance. I would definately not be able to have my injections if I had to pay vast sums for them. I've been able to stockpile some, so next time the beast comes calling I'm ready for him.
Maz.

I dreaded telling my GP about the D3 regimen I was taking and especially how much D3 (20,000). I printed out the regimen plus some other stuff and gave it to him. After I was done he said, you know if it works..do it. He also said in 5 yrs it would probably be an accepted treatment but for now the big pharma would discourage it...too much $$ to be made with prescriptions. Shocked me to say the least since he is part of a big medical center here in the States. It helped that my glucose level dropped 10 pts and my blood pressure is down too!

See if you can get a D25 test done and report back here. As for the scripts, my neuro would only prescribe O2 and it is the accepted treatment, even according to the Mayo Clinic! Possibly someone on here can offer some guidance to at least get the O2 which will save your life!

Good luck on the 16th!

Judy

Hi Maz & Judy,
Here in OZ we can get to see a doctor the same day, and
if he bulk bills it costs you nothing, otherwise it's $67.00 a
visit, which you can claim back a proportion from medicare.
You have to pay for the script. Well it seems were no closer
to an answer. And, back to we are all different

Hoppy.

After many years of being on this message borad I've noticed that:
Men usually start CH in thier early 20's and are mainly episodic.
Women usually start CH in thier 50's and are mainly chronic.
Kinda points to some sort of hormone thingy.

Started when I was 39. Episodic. I am now 61 and chronic. No history of migraines. blessings. lance

Episodic CH since 11 yrs old, now 45.

-Gregg in Las Vegas

Started as an episodic sufferer at age 32 or 33. I'm now 49 and still episodic. The only difference is I used to get the clusters in fall (late October), but last 9 years they've occurred around Christmas.

Blessings to you all.

started episodic at 48 (2009 )
in recalling, had only 3 0r 4 shocking headaches pryor to that at different stages in life, but they were one of's.  got beer headaches in my twenties, gave up beer, but was fine to drink it 3 or 4 years later, ( like when you drink an ice drink to quick ) couldn't finsh a glass without it coming on, would only last 10 minutes.  ( kip 3 )
started getting beer headaches again in 2000, couldn't figure out why, gave up beer perminantly in 2001 because it didn't matter when i'de try a beer, the ice headache would happen ,then full on clusters started in 2009.
I believe I had the cluster happening inside me, from an early age, but it didn't really show itself, apart from when trying to have a beer.
      and yes, I still crave the taste of a beer
        but in cycle or not,  I just cant bring myself to try !
colin   

In a survey of over 12,000 clusterheads, 72% started before the age of 29.

My ch started at a young age of 31 if I remember correctly.  I had never had a ha a day in my life before.  I started also getting migraines chronically like 8-15 times a month.  About three years latter I had a hysterectomy.  It did not effect my ch at all but my migraines stopped to like 1 or 2 a year.  So my migraines were hormonal but ch was not.  PS NO estrogen replacement therapy because of me having endometriosis also.

Mine began when I was 14, lasted for 19 years episodic. Currently two weeks from the magical 11 month borderline of becoming a chronic, though my neuro already wrote me as a chronic in diagnosis papers for the insurance company.

Late teens for me......about to turn 54....3.5 years pain free on The Batch Regimen!

Joe

My CH's started at 42 in 2007. Episodic until June of 2012. I was in cycle until somewhere in October of that year. They slowly morphed into chronic paroxysmal hemicrania over the course of that month. I now get anywhere from 5 -25 hits a day. The indomethacin and verapamil keep the pain down to a kip 3-4. Without them the pain runs at a 6-7.

Mine started about age 55.  I had only had self-abuse headaches until I suffered significant injuries in an auto accident in 1994.  Lots of troubles as a result of that, but I haven't had a day without some sort of headaches since.  Odd, but the ones that I thought were "so bad" turned out to pale in comparison to CH.  Thinking back, I believe that I had suffered CH shadows and mild hits until they fully fulminated.  Heck, I'm in denial most of the time, so my recollection is a bit fuzzy.  It's as if I don't want to recall.  That's why I started a diary.  I typically enter something every day during a cycle.  My last cycle was 21 weeks.  Wahhh.  Then almost a year, now on again and in about week 10. 

Once you get a plan of abort action, remember that it typically helps to get on it ASAP.  I learned that here.  It's good advice.
        - TJ

Hi All,
Thanks for all of your replies. It's just amazing how the
[smiley=evil.gif] works in such mysterious ways.

Hoppy.

Mine started at 31; episodic.  Now 56 - still episodic.  However, the D3 is keeping me pf!

First CH in my early 20's, now 62 and still get 'em. My cycles progressively improved the older I got, i.e., less severe headaches (but still plenty bad!) and increasingly longer time between cycles.

Two cycles ago, I'd estimated that it had been 10 years (!) from the previous one, but that's when I started using Imitrex, and since then, only 3 years elapsed from that cycle to the one I just got over. I'm nervous now about whether Imitrex has shortened my remission periods, but still happy that it makes a CH cycle vastly more bearable!

It's hard to remember when they first started. Possibly in my late 20s,  but they really began hitting hard in my late 30s-early 40s.

A bit after age 50 they stopped for the better part of 5 years, then I got hit with a typically painful cycle, and another a year later. Then I got cancer, that was fun.

But still no CH until I was prescribed nitro cream to treat a circulatory disorder, and that triggered another cycle a little over a year ago.

Nothing since. I turned 60 a few months ago and have no illusions that it's all gone.... but plenty of hope.

Started when I was 31.given lots of antibiotics for my "acute sinus infection" for the first couple of years.6-8 week cycles for first couple of years.pain free for 1.5 years then massive cycle and final correct diagnosis this summer.12 - 14 weeks this one was.had my first kip 10 too.will be 37 this spring.

I was diagnosed in 2010, i was only 17, it was only then that it clicked that i had had it for a long time before actually seeing a doctor...going to the clinic that day, i thought id get help immediately...I was just told what I had and was told to go to the nearest pharmacy to pick up pain meds (that i already had been taking)...I felt that no one understood what I was going through especially coz I was younger...and the pain meds did not help one bit..I could not eat, I tried to sleep but it wouldn't let me..i felt so alone :'( but im glad that I found this site, with people that know how it is to feel this way. :D

Guess I'm the oddball! My CH started in 2005  when I was 58 and my ENT suggested clusters. Confirmed by my neuro in 2006 and I'm now 66. They started as kip 9 every 1 hr at night for 6-8 weeks every 2 years in the spring. This last cycle was 4 months long and my hits were all over the place so hopefully old age is setting in and they will soon end!

Started when I was 26.
Finally diagnosed when I was 37.

Cycle duration is 10 - 14 days.
Most common cycle interval is 12 months.
Cycles have been as frequent as 6 months.
Most recent cycle had an 18 months interval.

Wardah wrote,
I felt that no one understood what I was going through especially coz I was younger...and the pain meds did not help one bit..I could not eat, I tried to sleep but it wouldn't let me..i felt so alone  but im glad that I found this site, with people that know how it is to feel this way.

Hi Wardah and welcome,
Sorry you had to find us, but your at the rite spot now
when it comes down to getting help. Tell us a little bit
more about yourself, and what meds you have been
taking, to find relief, other than pain killers, as they
don't do jack shit when it comes to treating CH's.

Hoppy. 

21 now, University student in Botswana, i try not to keep tabs on my cycles because of the anxiety attached to it but then there are times when i cant help it, like I know that im going thru one now, they come at night, can last for hours and it"ll probably take weeks to stop. at times i get violently ill when its really bad, i cud stay up all night puking, trying to sleep off the pain but end up unsuccessful, lying on the floor in the dark wanting to die ...Botswana is still a developing country in Africa..which just makes things worse for me because no one is actually knowledgeable about CH...all they do is prescribe pain killers like Myprodol, Adcodol and Syndol...just yesterday I went to the pharmacy for help, told the man that id been taking adcodol and it did nothing for when it gets really bad, his response to me was to take them more often..2-3 times a day he said...but i know that i cant keep doing that,i dont want to get addicted and already i suspect that my esophagus is getting corroded coz of all the pills. was told by the doctor who gave my diagnosis to stay away from caffeine and cheese and to get even hours of sleep every day...didnt work... :-[  :'(
i also try my best not to wake the family up..even though its almost impossible to stop whining, cursing, crying, tossing and turning. i saw the Kip scale, i do ask myself "why me" and thats 9 on the scale..but i do not bang my head on anything as i feel it would do more bad than good.

Hi Wardah,
Thanks for sharing your story with us clusterheads. I'm not
normaly lost for words, but theirs always a first time lol.
So hoping some one else will chime in with some help.

Hoppy.

Hi Wardah
Sorry you're having such a bad time. I can tell you now, that pain meds will have no effect at all on CH, not even morphine, so if nothing else you can save your money.

I don't know the situation in Botswana, or what will be available but I can tell you what most of us find best. Firstly, check out the "oxygen info" highlighted yellow tab on the left of your screen. It's most peoples life saver. Next, if you can get imigran auto injections, they are awsome at aborting CH and will work in a few minutes. There are tablets and nasal spray too, but the tablets take too long to get into your system. The injections are definately the best, but expensive if you have to pay for them.

Have you tried the energy drink tip. At the very first sign of pain ( don't wait ) drink one really fast . It's the combination of caffiene and taurine in a sudden hit that does the trick, so anything with those ingredients will do - Red bull, Rockstar or Monster are three I can think of. It doesn't work for every one but it does help a lot of us, so well worth a try.
Good luck
Maz.

do i need a prescription for them though?the Imigran that is..
iv tried my best to stay away from energy drinks coz of the health issues involving it, like weight gain (although im not battling with weight, i have a high metabolism, was just saying) and heart complications (there are times when my heartbeat increases rapidly and i feel like my heart is in my throat)..and also coz the doctor who saw me told me to stay away from caffeine,,, but now im not so sure if he was right.. :-/ worth a try though.
what is the process for getting oxygen anyway?  :-?

Hi Wardah,
with heart problems you are limited to what CH meds you
can take.On your ? about oxygen you need to see your
doctor about this. Same with the Imigran. Injections are
the best. But again talk it over with your doctor.

Hoppy.

If you don't have any weight issues I can't see a problem with the energy drinks. You could compensate for the extra sugar in other ways, and if it works for your CH then it would be worth the effort.

You do need prescriptions for imigran, but unfortunately I don't believe you can take it with heart problems. You can also get oxygen on prescription bu tell your doctor (this is important) you need a flow rate of 15 - 25 ltrs per minute, and a non rebreather mask. Nose canulas and other masks, and a lower flow will not work.

Also there are lots of preventative meds you could try. Verapamil seems to be the most effective.
Maz.

LasVegas wrote on Jan 7^th, 2014 at 8:42pm:

Episodic CH since 11 yrs old, now 45. -Gregg in Las Vegas

Thats about when I started. Usually my cycles last about 3 months and I have a 4 or 5 year remission. Curently I'm 37 and at exactly 6 years from my last attack. Perhaps I will start a new cycle this summer. Maybe I will never get one again but I have told myself this before and I was wrong. You never know. One thing I will say about my cycles is that they get worse with age. However the older I get the better equipped I am at handling them.

Hi Wardah,
You can't take Verapamil, if you have a heart condition.

Hoppy.

thank you all so much!gonna try and see a doctor asap.. have to find what works for me.. :D
shame about the other meds tho...but then again,,maybe the heart thing isnt serious,,,il talk to a doc though.

Mine started at 17 years old. I am now going on 29 years old. I am starting to get a grip on the beast with the Batch regimen.

Thats good news.  [smiley=thumbsup.gif]

Hoppy.

Episodic. Mine began when I was 16, and I'll be 40 this year, so I've had them 24 years. The last 5 years I've been PF mainly due to RC seeds.



Hey BobP :P

I'm 67 now. Mine started in my middle 20's. Episodic twice a year. No attacks between age 52 and 59, then they started again. A lot less painful and shorter attacks until 3 years ago when I became chronic. usually just one a day in the early AM and almost never above a Kip 6. A 2 oz. shot of 5 Hour Energy drink and sometimes an ice pack will kill them in 7 to 9 minutes.

Episodic since 13 or 14. My mom took me to the eye doctor who said I had a astigmatism that was causing these ha's. He put me in a pair of glasses. They were constantly getting broke and I never really needed them to see, so after a while my parents stopped forcing me to where them. I started getting classic cycles at 28, that's when I was diagnosed. Now at 44, cycles are much worse and longer....but I still dont need glasses.

I am a male. Got my first CH when I was 23. It was diagnosed as mononucleosis or stress (this was in 1979, the Dark Ages of CH when it seems to have been an unknown). The next cycle was a few months later. It is episodic, with occurrences now around every three years, lasting just over one month. /// I saw the vitamin D3 reference in this thread and looked it up. Next time I will try that, along with oxygen which I have not yet used because it's been a hassle to get it in the places where I have lived. Wishing everyone strength, optimism and PF days.

I'm 60 yrs. now. Had my 1st episodic attack cluster ~4 yrs ago at age 57, lasted about 3 months (Jan. through Mar. 2010). Now in the middle of my 2nd cluster, started early Dec. 2013. It is hammering me pretty good this time, recently (last 2 weeks) sometimes up to 8 attacks per 24 hr period. Joined forum a few weeks ago. Started the D3 regimen about a week ago. Finally got O2 set up for delivery at the house today, hope it works on some of the 9-10 KIP scale attacks I seem to get each day.

aceserve, Don't wait for your next cycle to start. Get on the D3 as soon as possible so that your levels are going up in advance. Then, your next episode may be a lot milder, or even not happen.

Up until last February, my neuro thought I was "growing out" of clusters after 2-3 years of very little CH activity. I am 61. If I got a cluster, I'd take verapamil 80 mg bid and quit in 2-3 weeks and they'd be gone. The year 2013 taught me otherwise. I had my longest episode ever (4 months, plus at an odd time: July-Oct), then they started up again the end of December. During the good years my arsenal wasn't needed and was discarded. Now I'm having to arm up again. O2 tank coming tomorrow, various other meds are being worked on (no local inventory in my rural area). Where's the emoticon with the high column of smoke over it? [smiley=nopity.gif] Well this will suffice because, really, there are so many people who have it worse. I am managed with 120 mg verapamil bid so not bad at all. Gonna take it out on the insurance company by fighting for O2 coverage.

Thats the spirit, keep fighting.

Hoppy.

This thread very disappointing, I also have read that clusters could go away with age but I am sure it varies.

I started at age 19 or 20 and am currently 39

SuperIrish,

$hit happens...  I'm 70... and I'm still a chronic CH'er.  It's no big deal as long as I keep my CH under control with the anti-inflammatory regimen.  I've been pain free since the second day I started this regimen in October of 2010.

There are times, like during the high pollen season when I need to average 25,000 IU/day vitamin D3 but I stay up with my labs.

Take care,

V/R, Batch

Mine are episodic, started in November of 2013 when I was 60. I am 61 now and in my third episode.