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(Message started by: dertravler on Aug 9th, 2003, 6:25am)

Title: (New guy) Do these get worse with age?
Post by dertravler on Aug 9th, 2003, 6:25am
I just found this site and have only known that what I was having were cluster headaches for a year.

???  I am guessing I have been having cluster headaches for the past 7 years.  I am 29 now.  First few years they were just an annoyance.  Then by the 4th year I went to the doctor for the first time and was told they were sinus headaches.  Last year I had the worst one I have had where I could not sit still and could not sleep.  I took 3 very hot showers directly on my head before going to the ER where a doctor finally diagnosed cluster headaches, gave me high intensity oxygen and it was gone in 10 mins.  

I am just wondering if I can expect these to get worse and more frequent within this window or few week period?

Title: Re: (New guy) Do these get worse with age?
Post by Jackie on Aug 9th, 2003, 7:12am
Hi Steven (is that correct?)

Welcome to the site....sorry that you have the need to be here but since you do...welcome.  There is a multitude of support and information here.  When you can read, read and read some more.  Knowledge is power....

It's good to hear that the 02 works for you.  Do you have a tank at home?   Are you on any prevent medication.....verapamil, lithium, etc.?  Do you have any other meds. to abort?

As to how your cycle will go...well, that's the million dollar question.  Clusters are kinda unique to each individual.

Good Luck
Jacks 8)

Title: Re: (New guy) Do these get worse with age?
Post by dertravler on Aug 9th, 2003, 7:31am
Well the O2 was only the one time.  Don't have a tank yet.  Only talked to one doctor, in an ER at 4am, who figured out these, were cluster headaches and gave me a 3 pack of imutrex.  Been holding on to one of them ever since.  Last year seemed like I went thru 3 cycles and the last I was able to halt most oncomings by popping a few Ibuprofrin as soon as I had any instance of one coming on.  It may not be healthy but I was taking IB even if I sneezed for those few weeks. LOL

I was just trying to get a fell from people whom know more about them if they seem to get more intense with age.  And if the real bad ones become more frequent.

Did I mention i can't spell.

Title: Re: (New guy) Do these get worse with age?
Post by JDH on Aug 9th, 2003, 8:22am
The bad news is that my h/a's seem to have gotten worse over the years (but that's just me, there's a lot of different answers for this one).
The good new is that with the information I've gathered from this website and finding a good Dr. I'm able to control them better than ever before.  Not many 9's & 10's anymore.
Ask your Dr about o2. If it works for you, you'll be amazed.

pfdan's

Jim

Title: Re: (New guy) Do these get worse with age?
Post by Prense on Aug 9th, 2003, 9:31am
As far as the worse with age question...mine has never gotten progressively worse.  Some days are worse than others, and some are, by far, easier to handle.  It has basically been a statistical roller coaster as far as the average KIP intensity goes as I have gotten older.  That's my experience as a chronic.

Chris

Title: Re: (New guy) Do these get worse with age?
Post by godsjoy on Aug 9th, 2003, 10:16am
Hi there Stephen,
I am relatively new to this board as well....I am a 14 year sufferer who got one year of reprieve ( last year was a honeymoon year....literally :-).....but as I recall the "old days" before I went to the Dr....( I was a single Mom and didn't do anything for myself....just for my daughter).....I suffered BIGTIME......I remember the hot showers....trying to get the water to BEAT down on my head and BEAT it out....and cracking up the ice and putting it in baggies and have it melt down my face as I tried to hold one over my right eye and one at the base of my head.....I was elated when I finally got diagnosed...and put on some meds.....I was hopeing against hope that the Dr's would just cure me.....:-)

A few years down the road and a little more jaded I found this board (2 years ago)....and thank God I did.....Don't ever ever shut down you guys.....PLEASE????? Here is where you can find all the info you will ever find.....Its our bodies and unless the Dr is Jesus, you won't find anyone more sympathetic to the cause....

After an MRI 2 years ago the Dr put me on Verapamil.....I was then out of cycle and didn't take it very long as my blood pressure is low anyway......This cycle with a new G.P. I was able to just tell him my history and what to prescribe....Maxalt works for me....BUT....the ins co only pays for 12 per month....so because of all the information I got here I got him to write a RX for oxygen and I bought my own used tank and keep it by the bed......AND....I dug up my old bottle of Verapamil as a preventative and started taking it about a week ago.....(I really didn't want to but soooooo glad I did).....I actually had a pain free night last night for the first time in 6 weeks ;D ;D ;D.....my cycle usually lasts 10 to 12 weeks.....soooo we shall see what we shall see.....
Love to all you guys here for being here....

So....Don't let your Dr or his/her staff make you wait or feel like you're putting them out....GET what you need!!!

Love and blessings,
Karen

Title: Re: (New guy) Do these get worse with age?
Post by Patrick_A on Aug 9th, 2003, 10:55am
28 year CH episodic sufferer here. I don't really know if mine have gotten worse. I do know they are not atypical. Some cycles are better than others, but trust me, That is always in hindsight! When the beast is dancing, it never occurs to me that "Wow, this one isnt near as bad as my last cycle" LMAO, sorry!
They always seem bad when you are going through them.

PFDANAWF, Patrick

Title: Re: (New guy) Do these get worse with age?
Post by Patrick_A on Aug 9th, 2003, 10:57am
Oh and BTW, Ibuprofen is a waste of money on my headaches. In fact they may as well be sugar pills.

Patrick

Title: Re: (New guy) Do these get worse with age?
Post by Gofishgriff on Aug 9th, 2003, 4:59pm
38 year old episodic.


Quote:
The bad news is that my h/a's seem to have gotten worse over the years


Jdh is not the only one.  Mine too have seemed to getting worse as I've gotten older.

Welcome aboard Steven.  Sorry you had to find us.  Hopefully knowing you're not alone out there makes this crap a little more easy to deal with.

Andy

Title: Re: (New guy) Do these get worse with age?
Post by dertravler on Aug 9th, 2003, 5:18pm
I am just trying to find out what I am in store for.  As I said I have only know these headaches I was getting were cluster headaches for a year so I have not had to track my occurrences.


But one thing I am curious about with the terminology is..........   Do they have to be referred to as cycles?  There is pretty much only one thing that comes to mind when I hear cycle used in medical terms.

Title: Re: (New guy) Do these get worse with age?
Post by Prense on Aug 9th, 2003, 5:32pm
Cycles, episodes...it's your damn HA...call it what you want!   ;D  It has been one big CYCLE  ;D for me either way.

Chris

Title: Re: (New guy) Do these get worse with age?
Post by Gofishgriff on Aug 9th, 2003, 5:38pm
LOL!

Sorry Steven.  Cycles are the best way to phrase it for an Episodic.  

You're gonna have to face it, this is a cycle that us He-men can get.  ;D

Title: Re: (New guy) Do these get worse with age?
Post by Elaine on Aug 9th, 2003, 7:57pm
I will be 50 next year and mine seem to be getting better  :). I am not sure if its age or I am just so mean in my old age they can't stand being around me LOL!
I know a few people here who have out grew them! There is HOPE!

Title: Re: (New guy) Do these get worse with age?
Post by brain_cramps on Aug 9th, 2003, 8:35pm
Mine 'seem' to have got 'better' (whatever that is   ???).  

For the first 15 years of taking all kinds of meds ( a lot of marcs), the cycles were about 6-8 weeks long (once every 18 months).  

For the last 5+ yrs, I've been med-free.  Coincidentally (I HOPE NOT), my cycles have gradually got shorter and shorter.  My last cycle was only 2 1/2 weeks long.   I'm hoping that this keeps up.

Fighting these without meds (even with REALLY short cycles) is not for everyone.  If my cycles suddenly got longer, I'd be the first in line for Imitrex.

glad my cycles are short,
grant          8)



Title: Re: (New guy) Do these get worse with age?
Post by 9erfan on Aug 9th, 2003, 9:14pm
It's definitely different for everyone.  Mine have gotten progressively worse over the years (with less & less pain free time in between episodes until I became chronic).  But since getting on board with this site, I have more hope than I did a few years ago.  I have the hope that I will eventually find a med combo that will work for me.

Good luck to you and keep us posted, we're here to help.

Virginia

Title: Re: (New guy) Do these get worse with age?
Post by Charlie on Aug 9th, 2003, 9:42pm
Welcome to the board. If you look around you'll find some good ideas to help you cope with this horror.

For me, these things were as bad on day one as ever.  The only variation was duration which seemed to finally level out at 20 minutes or so for 22 years. The good news is that it isn't necessarily so that they get worse. When I hit 45, they went away and haven't returned for 12 years. I can only hope the rest of you have this kind of luck.

Charlie

Title: Re: (New guy) Do these get worse with age?
Post by Donna on Aug 9th, 2003, 10:32pm
My cycles were spring and fall for a period of six weeks each.....for 28 years.  They always went from 0 to 8 or 9 within a few minutes.

Then one beautiful day, 17 years ago, they just simply disappeared.

I wish you the same...........so much!


Title: Re: (New guy) Do these get worse with age?
Post by brain_cramps on Aug 10th, 2003, 1:35am

on 08/09/03 at 22:32:58, Donna wrote:
Then one beautiful day, 17 years ago, they just simply disappeared.


Hoping and praying this happens to everyone!!!

grant

Title: Re: (New guy) Do these get worse with age?
Post by totka on Aug 11th, 2003, 3:31am
Hi Steve,

My experience: it's worse year by year but we aren't alike.

PFDANS

Steve (totka)

Title: Re: (New guy) Do these get worse with age?
Post by cathy on Aug 11th, 2003, 5:32am
Hi Steven, Welcome to the board, hope you find the support and love that we have here....Wes is episodic and his cycles have got worse since they started but this doesn't mean they will for you....here's hoping they don't!!

Keep us posted.

Wishing you all PF times.

Cathy  :)

Title: Re: (New guy) Do these get worse with age?
Post by vig on Aug 11th, 2003, 10:41am
mine get worse every time through.

I had to modify the Kip scale...
There's usually a handful of 11's in an episode that redefine what a ten will be next time...like last night.
ouch.



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