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        New Message Board Archives >> Medications, Treatments, Therapies 2003 >> DOES CH GET PROGRESSIVLY WORSE? 
        
(Message started by: henry on Mar 12^th, 2003, 1:28pm)

Title: DOES CH GET PROGRESSIVLY WORSE?
Post by henry on Mar 12^th, 2003, 1:28pm

I’ve had CH for 10 years. The 1st time the cycle lasted less than a week, then went away for 5 years. The 2nd time with a month long cycle and more severe pain , then went away for 3 years. The 3rd cycle lasted 3 month with occasional multiple attacks a day, ended last January. I am now at the start of my 4th cycle. Reading some of the cases on this web site, I see some of my fellow sufferer have it a lot worse than me. Does CH progressively get worse till the cycle is long and almost no time in between? I want to hear from some of you who have CH for years. If this is so, how do I prepare and deal with it?
Thanks for sharing and you help is greatly appreciated!
Henry

Title: Re: DOES CH GET PROGRESSIVLY WORSE?
Post by Mr.Happy on Mar 12^th, 2003, 4:19pm

Quote:

I am now at the start of my 4th cycle.
{snip}
Does CH progressively get worse
{snip}
(From late Feb., 2003)
My CH just came back 3 days ago. It last went away Jan. 2002. I took sansert for 3 weeks. It really helped me. I just went to a doctor to get a prescription today and was told that sansert is no longer produced. Any suggestions for an alternative? How is Verapamil? I would appreciate any feedback from my fellow sufferers

Henry,

Now that you're on your 4^th cycle, you probably realize that this sucker is going to be hovering around you for a long, long time. Cycles can vary widely in duration and intensity......there's no definitive answer on whether they get progressively worse, chronic, disappear............whatever.
That's not half as important as your question:

Quote:

how do I prepare and deal with it?

You deal with it thru "Medications, Treatments, Therapies", the title of this board section.
With your Sansert out the door, you've got to aggressively find alternatives that work for you. You haven't mentioned what you are using to combat this cycle........unless you've got a decent stash of Sansert.

Verapamil is a great place to start as a preventative. Many here swear by the stuff.........with any luck, you'll have the same results. It's one of the "kinder, gentler" preventatives......

O₂ comes highly recommended, and with just cause. If you haven't tried oxygen as an abortive, do so immediately. Although there are those that do Not respond to oxygen, there are far more that rely on it as their primary abortive..........right up there with Imitrex. There's a ton of info and testimonials on O₂ around here. Call your doc and try it today. Even if it's not covered by insurance, it's relatively cheap and has no side effects..........other than stopping a CH dead in it's tracks.
Talk to your doc about starting Verapamil/Imitrex/O₂ as a "Starter Kit" (unless you already have a successful working combo). Hopefully, you'll respond to those three, and won't have to walk on the Dark Side of treatments.
Either way.......get on a meds program that works for you this cycle. It'll make life that much easier......both today, and for your next inevitable bout. Make sure your Doc has all the meds you need to take _well_ documented, so that when the Starting Whistle goes off the next time, relief is only a phone call away.
Pardon me, while I mention O₂ again, and again, and again..................

Repetitvely yours,
RJ

Title: Re: DOES CH GET PROGRESSIVLY WORSE?
Post by tanner on Mar 12^th, 2003, 11:52pm

henry,i am chronic so i'm not sure it translates "apples to apples" but yes!!! my first cycle lasted approx 6 yrs with zero pfds and the severity (or my ability to cope definately got worse as time went on. I am there again, and even tho this is only 600 and something days, i
am progressivly worse! i am a firm believer that this shit is building to a point where i won't be able to handle ti!
i'm sorry i forgot to tell you i was ha free (except for migraines) for 7 yrs in between. i'm just older and less sure of being able to weather this storm.. good luck and lots of good days (pf) in your future ,,,,,,tim

Title: Re: DOES CH GET PROGRESSIVLY WORSE?
Post by Bob P on Mar 14^th, 2003, 9:07am

My clusters have gotten better with age. For 20 years I would get hit with a 6 week cluster every 8 or 9 months. At age 40 they went to every two years. Each remission gets a couple of months longer. Last one was 2 years, 7 months. I believe I will be one of the lucky ones who eventually outgrow these things completely.

Title: Re: DOES CH GET PROGRESSIVLY WORSE?
Post by cbolony on Mar 14^th, 2003, 11:12am

Henry i been having ch since 1996 i'am 50 yrs old.I get 3-4 cycles a year no change for me.Been in 3 cycles since
june the last one just finished 10 days a go

Title: Re: DOES CH GET PROGRESSIVLY WORSE?
Post by dizzyd on Mar 14^th, 2003, 7:29pm

Hi Henry,

Not sure if clusters get worse as you get older, it seems as though they vary for everyone. Me, I am a chronic clusterhead. Been suffering for 22 years. Used to get them every other season. From the first to last day (3 months) like clockwork. Usually the spring and fall, but some years it was the summer and winter. Anyway, about 10 years ago, they came and never ever went away. They tend to get worse or more active during certain seasons as they always did before but now they never stop in between. Not sure if it was age (started at 22, now 44), not sure what did it. I have always prayed for an end to all of this, hoping that as I got older they would go away, but no such friggin luck.

Not sure how to tell you to deal with them long term.........of course with your meds, but emotionally, you just have to tell yourself that tomorrow will be a better day and try not to let the clusters control your life. For me, I'll be damned the day clusters take over everything!!

DizzyD

Title: Re: DOES CH GET PROGRESSIVLY WORSE?
Post by nmstevens on Mar 15^th, 2003, 12:10am

In my personal experience -- absolutely yes. As a kid I used to get random headaches -- which, since they didn't "cluster" -- I'm not sure whether you call them cluster headaches or simply migraines. In my mid-twenties, I started to get official "cycles" -- but they started off fairly modest -- maybe a headache a day, for a week or so.

But over the years, it became clear that each cycle was noticeably worse than the previous one -- and that the "rules" of the previous cycle -- duration, frequency, time of day, length of the cycle -- would also get worse with subsequent cycles.

In addition, and I don't know whether anyone else's experience goes along with this -- whatever I took to break a given cycle wouldn't work the next time around.

Since I discovered Imitrex I can pretty much head off the attacks and function -- on the other hand, nowadays, I can get three headaches a day (admittedly less than some but more than I've gotten in the past) and my current cycle seems to be going on forever.

So it goes.

NMS

Title: Re: DOES CH GET PROGRESSIVLY WORSE?
Post by clavers on Mar 17^th, 2003, 8:53am

I have had them for `19 years. For the past five years I have been chronic. They have gotten steadily worse. I am going to lose my mind.

Title: Re: DOES CH GET PROGRESSIVLY WORSE?
Post by suzy617 on Mar 17^th, 2003, 8:08pm

I've had CH for going on 22 years now but I am fortunate enough to only get them once a year sept and oct. Mine never seem to change although this past year was the very worst as far as the pain goes.

I believe one day the beast will develop dementia (hopefully before I do) and forget to come back. ;)
Good luck to all you suffering now...wishing you PF time real soon.

suzy

Title: Re: DOES CH GET PROGRESSIVLY WORSE?
Post by smfaison on Jul 8^th, 2003, 7:57pm

I am male and 47 years old. I have had episodic clusters as long as I can remember. My first cycles were before I was 10 years old. My cycles used to start in even years and lasted 4 months. I skipped 2000 for some reason, and now my cycles start in odd years. Maybe because I started taking BP medication the year it skipped? I would say that my HA's are more severe than they used to be, but the cycles don't last any longer. After 4 months, they still taper off. Fortunately, I have stayed an episodic sufferer all along, and never gone chronic. I can't imagine how bad that would be!

Title: Re: DOES CH GET PROGRESSIVLY WORSE?
Post by Charlie on Jul 8^th, 2003, 9:26pm

Henry:

For me, they got great. It's been 12 years since it's been around. Going for another century. I'll be 57 next month and they disappeared when I was 45. They were always just horrible. The first one was just as painful as the last. I will say that the last two years, I was never able to anticipate when this horror would show up. They didn't behave. They were the same intensity however.

Keep up the good fight and you'll find good info here

Charlie

Title: Re: DOES CH GET PROGRESSIVLY WORSE?
Post by JDH on Jul 8^th, 2003, 10:55pm

Henry,
I've been episodic for 18 yrs and yes my cycles do seem worse and last longer than they used to.
But don't give up hope, when you read the post here it's like everything else with this mofo, nothing's very consistent.
pfdan's

Jim

Title: Re: DOES CH GET PROGRESSIVLY WORSE?
Post by vig on Jul 9^th, 2003, 10:28am

I started having month long clusters in October and April, then they grew to six weeks and are now almost two full months in duration. Then starting last summer, throw in a bonus Summer episode in July and what started as a month or two, now takes up about six months of the year...and counting. Plus each episode is more intense than the previous. I get a handful of Kip 11s (Spinal Tap reference) in each episode that are worse than anything I've ever had before. Everytime through, the worst is worse than the previous worst.

I'm 43 and this started about 7 or 8 years ago.Hoping this pattern subsides a little before I'm a complete vegetable. I'm halfway to Henry Fonda in On Golden Pond. Ouch.

-p

Title: Re: DOES CH GET PROGRESSIVLY WORSE?
Post by Pushkin on Jul 9^th, 2003, 12:02pm

Hi Henry,

I started getting CHs about 30 years ago (I was in my 20s). They got progressively worse until about 8 years ago, then the frequency and duration started to decrease. I went from 4+ cycles per year to one every 5 years (until last week). They used to last for 2-3 months, but the last few have been more like weeks. The CHs when they come, aren't any less intense, just fewer and farther between cycles. O2 has saved my life, before O2 CH was living hell. Most other meds worked for a while and then the CH got around them, but so far O2 is my salvation.

Good luck,
Pushkin

Title: Re: DOES CH GET PROGRESSIVLY WORSE?
Post by sueellen83 on Jul 9^th, 2003, 1:26pm

Henry,

I started having CH when I was seven. The cycle lasted about two weeks, then nothing for six years.

at 13 the cycle lasted about a month then went away for 3 years.

My cycles seem to get closer together and longer in duration as I get older.

Usually about 2 years apart in the fall or spring. My last cycle was last year and started in August. It lasted 6 months. Strange!

As Aug. rolls around this year I'm holding my breath to see what happens. I have been shadowing a lot this month and I've never done that between cycles before.

The beast is good at changing the rules just when you think you've figured them out. LOL

Hang in there. Wishing you PFD&N very soon!!

Title: Re: DOES CH GET PROGRESSIVLY WORSE?
Post by jlm77 on Jul 10^th, 2003, 2:32am

Henry---
I've been getting CHs for 23 yrs. I have tried many drugs,herbals.acupuncture,etc. Some have worked and some haven"t. But what is true is that---what works for one cycle doen't nessesarily mean it will work on the next cycle. Yes the "BEAST" changes--it becomes immune and you don't.
As far as cycles getting worse with time--the "BEAST" is unpredictable in this sence,but predictable in when they come ---just like clockwork.
Find a good Dr. who knows about CH--The rest are just guessing--if you do some reading and research you will know more.
o2 was great for my first 3 cycles--then o2 w/ergostat at onset--good for the next 3 cycles--and more and more
Good luck in finding your relief and breaking your cycle.

Title: Re: DOES CH GET PROGRESSIVLY WORSE?
Post by NotH20 on Jul 10^th, 2003, 10:30am

Henry,

I started w/ ch's in 1980 when I was 15 years old. I had ch's every day for 4 years. In 1984 I was FINALLY diagnosed and from that point onward I've had a cycle every 18 months - 2 years and it usually lasts around 4 months each time. I get my cycle around the fall season.

I have noticed that the intensity of each cycle is higher and more painful - but one positive thing that I've noticed is that my response to various meds is also much better. Different meds work for each cycle but Imitrex has NEVER failed me so I'm lucky :)

The last cycle I had was in the Fall of 2001 and went through January, 2002. I was on a DHE IV drip that stopped my cycle. Hopefully it ran the beast off, but we'll see with the next season.

Good luck to you....

Mia

Title: Re: DOES CH GET PROGRESSIVLY WORSE?
Post by MarkHW on Jul 10^th, 2003, 11:07am

Mine have gotten progressively worse...
That doesn't mean everyone's will.

I am 40 and started with cluster at about 24/25. I was episodic then... a couple months every spring. 10 years ago I became Chronic.... with brief respites (a couple days here & there). Some days I only had one mild one. Medications worked sometimes. Now.... 2 to 3 a day, every day with or without meds.

Mark

Title: Re: DOES CH GET PROGRESSIVLY WORSE?
Post by NewHeadPLZ on Jul 10^th, 2003, 12:12pm

These damn things have been with me for 22 years and progressively got worse. Two years ago, I figured I was chronic and by definition, I was. Then they quit for almost a year. Next thing ya know, October 2002 they started coming back. Been having 3-6 a day since.

Who knows what these things will do. Best thing is not to worry about it and find the meds ya need to effectively reduce the number of attacks you have a day (zero would be nice) and the med ya need to abort an attack when ya get one!