Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        New Message Board Archives >> 2004 Cluster Headache Specific Posts >> Dear Chronics
        
(Message started by: mynm156 on Jun 3^rd, 2004, 2:26pm)

Title: Dear Chronics
Post by mynm156 on Jun 3^rd, 2004, 2:26pm

I have been diagnosed for 4 years but pretty much dealing with these for close to 15 years. This year has been my worst. Starting in early Feb. and pretty much through TODAY. I have been having almost daily headaches but living in constant shadows durring this time. I did have nearly a three week break from it all but the beast came back again and they seem to be getting stronger. I use to have cycles that would last a month or so. Some meds will help some will not U all know the drill. My question is Do we all the Chronics live like this? I mean EVERDAY. I know that we all have to learn to deal with these and not let them destroy our lives but this constant pain is wearing me down. Have pretty much tried everything.

Just a bad Shadow today guys cant see Neuro for a few days.

Good VIbes To All

MYNM156

Title: Re: Dear Chronics
Post by UN_SOLVED on Jun 3^rd, 2004, 3:11pm

EVERYDAY
SINCE OCTOBER OF 2000

The ONLY time I really get any PF time is when I'm in the hospital getting DHE or Solu Medrol. Using LOTS of Imitrex injections to abort (too much). All else has failed !

Hang in there
Michael

Title: Re: Dear Chronics
Post by Karla on Jun 3^rd, 2004, 3:32pm

I was daily from 2/98 to 3/04. No breaks.

Title: ND Re: Dear Chronics
Post by LINNIE on Jun 3^rd, 2004, 3:33pm

I'm having the same problem this year. Mine started at the end of January and nothing seems to be working this time. I'm exhausted and don't know how much more of this I can take.

Title: Re: Dear Chronics
Post by mynm156 on Jun 3^rd, 2004, 5:13pm

WOW!!!!

SUCKS TO BE US HUH!! Well at least I know what I am in for and that U all are here too!!

Thanks Guys!!

Hang Tough

Good Vibes

MYNM156

Title: Re: Dear Chronics
Post by Woobie on Jun 3^rd, 2004, 6:26pm

I dont know how you guys do it. You've got to be the toughest buggers in the world! :-[

HI LINNIE and welcome!!!

Title: Re: Dear Chronics
Post by Prense on Jun 3^rd, 2004, 8:07pm

9 days PF last August-September time frame is the longest PF period I have had since 1993....

I wouldn't wish to be episodic at all though...I'm not a "grass is greener" type of dude.

At least imitrex injections work very well.

Chris

Title: Re: Dear Chronics
Post by UN_SOLVED on Jun 3^rd, 2004, 9:24pm

on 06/03/04 at 20:07:36, Prense wrote:

At least imitrex injections work very well.
Chris

I rely HEAVILY on Imitrex injections. IT'S A MUST HAVE AT ALL TIMES...NEVER LEAVE HOME WITHOUT IT !
TGFImitrex
;;D

Unsolved

Title: Chronics
Post by maria9 on Jun 3^rd, 2004, 10:26pm

Hi,

As I have said before there has to be an answer to this horrific pain that we are all experiencing. That is why my husband and I have decided to support this research and I hope you will as well.

http://www.maps.org/cgi-bin/thatsanorder_LE

Marsha

Title: Re: Dear Chronics
Post by miapet on Jun 4^th, 2004, 2:56am

D was chronic (since 1985) .. .he has been p/f for a little more than 3 weeks (this is a FIRST), all due to the alternative, listed in the previous post . . . we fully support maps, and everyone involved in the program/research . . .we fully believe this is the way to beat this beast.
*positive light and energy*
miapet and D

Title: Re: Dear Chronics
Post by mynm156 on Jun 4^th, 2004, 10:35am

My 3 week break came after a (MAPS) attempt.

Now what?

MYNM156

Title: Re: Dear Chronics
Post by ave on Jun 4^th, 2004, 11:02am

Read www.clusterbusters.com again..

And dose again. And posibly again.

Sometimes you have to persevere a little longer before packing it in.

Title: Re: Dear Chronics
Post by notseinfeld on Jun 4^th, 2004, 12:56pm

As a chronic I guess I've got it easy in comparison to you guys. I have a daily reminder at best and a maybe a K3 at worst. Ever since dropping all meds, particularly the Triptans, things have improved to this, staid state.

However, television is a sure-fire trigger thus no Fraser, Sopranos, and the rest for me. Have maybe a 40 minute window then straight to the O2. Heck, took 2 weeks to get through "The Piano" video. Watchus Interruptus meguesses.

With Faith in MAPS,

nots

Title: Re: Dear Chronics
Post by jonny on Jun 4^th, 2004, 5:48pm

If you had three weeks PF your not chronic anymore, maps or no maps.

..................................jonny

Title: Re: Dear Chronics
Post by Prense on Jun 4^th, 2004, 6:05pm

I think they changed the criteria for chronics to 30 consecutive days PF in one year unmedicated. I know all the documentation still says 14 days, but I recall reading somewhere that it was changed to 30. I may have misread something though.

Chris

Title: Re: Dear Chronics
Post by jonny on Jun 4^th, 2004, 6:22pm

on 06/04/04 at 18:05:54, Prense wrote:

Thats what I love.....Someone that has never had a CH making the rules as to what is what, Now what would make a chronic not chronic if that person was taking helpful meds?

I know I can go two months without CH but as soon as I stop my prevenitive meds "BAM" im in deep, seems to me that im a chronic that is masked with meds......I dunno it just sucks that shit-heads make the rules and then change them as they see fit and they have never even had a CH.

.........................................................jonny

Edit:.....Its like saying an alcoholic is not an alcoholic cause they are taking antibuse

Title: Re: Dear Chronics
Post by Roxy on Jun 4^th, 2004, 9:06pm

Quote:

Previously, it was cluster attacks that lasted more than one year with less than 14 consecutive days in remission. Chronic is now considered cluster attacks lasting more than one year with less than 30 consecutive days of remission IRREGARDLESS of medication.

This was how Dr. Bigal put it during his lecture at the last convention.

Title: Re: Dear Chronics
Post by Roxy on Jun 4^th, 2004, 9:09pm

Oh yeah, to answer your question:

on 06/03/04 at 14:26:29, mynm156 wrote:

My question is Do we all the Chronics live like this? I mean EVERDAY.

If you can't find a preventative med, than this is life you lead.

I had eight days PF last month.....it was cool..... 8)

Title: Re: Dear Chronics
Post by 9erfan on Jun 4^th, 2004, 9:33pm

I had 15 hours PF in July 2002. >:(

Title: Re: Dear Chronics
Post by 7yrscronic on Jun 6^th, 2004, 9:14am

I've always been chronic and I've had roughly 30-45 days off (non-consecutive) in the last 3-4 years. I used to try to keep track of this stuff, but I found it's too depressing and a pain in the ass. Imitrex has never worked for me, so I rely heavily on O2 (never go ANYWHERE without it) and Zomig has been my other friend through the years. I'm just trying to live my life trying not to allow CH to control me.
-Todd

Title: Re: ND Dear Chronics
Post by Gator on Jun 14^th, 2004, 7:55pm

on 06/03/04 at 15:33:40, LINNIE wrote:

I'm having the same problem this year. Mine started at the end of January and nothing seems to be working this time. I'm exhausted and don't know how much more of this I can take.

Welcome to the website and message board. We all know what you are going through as far as the ch goes. I've been hurting since November 2003. I still haven't found a prevent that works. Thank God for Zomig NS and O2. The best advice I can give is to become an informed patient. Read everything in the links to the left and on the OUCH website. In the meantime, drop in whenever you feel like screaming and let loose. We try to listen pretty well. You may not always get the answers you were looking for, but the answers you do get will be honest with no punches pulled. We are all a kind of dysfuntional family here. Welcome to the family.

In answer to the questions about what is considered Chronic, here is the latest edition of the classifications from the IHS.

http://216.25.100.131/ihscommon/guidelines/pdfs/ihc_II_main_no_print.pdf

Gator

Title: Re: Dear Chronics
Post by ChRoNiCk on Jun 15^th, 2004, 1:53pm

man, this sucks. im not sure if i qualify as a chronic, but for 3-4 months i get them EVERY day ALL day long. mostly about k4 all day, with attacks up to 8 or 9 like 3 times a day. i'm always thinking, "why me?" meds work for like a day then they stop working, damn i cant wait till they go away in like november.

Title: Re: Dear Chronics
Post by Gator on Jun 15^th, 2004, 4:35pm

on 06/15/04 at 13:53:02, ChRoNiCk wrote:

To answer your question, if you only get hit for 3 - 4 months out of the year, then you are episodic, not chronic according to the IHS classifications. Chronics go for an entire year without 30 consecutive days break.

You say you have the headaches ALL DAY LONG? Describe the length and number of attacks. Where on your head are they? Always the same side? What meds do you take, prevents and aborts? Have you been diagnosed by a GP or Neuro? Have you had any kind of MRI to rule out possible organic cause?

Inquiring minds want to know. Maybe we can help find the right materials for you to discuss with your doc.

Gator

Title: Re: Dear Chronics
Post by ChRoNiCk on Jun 15^th, 2004, 4:45pm

MRI came up with nothing out of the ordinary. Both my GP and neurologist say its cluster headaches. I get them on both sides of my head. I guess the headaches I have all day are what you would call shadows, but they are still pretty nasty. The attacks last anywhere from a couple of minutes to over an hour(these long ones make me wish someone would just put me out of my misery sometimes). Somedays I'll just have the bad shadows all day, most of the time i get 2 or 3 attacks a day. So far the only preventative med I've tried is Prednisone, didn't do jack except give me bad acne. As for aborts, fioricet, ultracet, fiorinoul, cafergot, and most recently relpax. All of these worked kinda well for the first day or two, then they really stopped. The relpax does a pretty good job of dulling the headaches, but so far nothing completely takes them away.

Title: Re: Dear Chronics
Post by Superpain on Jun 15^th, 2004, 4:58pm

on 06/15/04 at 13:53:02, ChRoNiCk wrote:

Sorry, but not only are you not chronic, that's a relatively short cycle. Be happy.

I believe the "definiton" of chronic just changed from 2 weeks to 1 month... Meaning if you go one year without one month of headaches, you are chronic.

And chronic isn't necessarily always chronic anyway...
My last cycle I went over 2 years without a month of PF. But besides fitting the "official definition" I was never chronic. I'm just one of the lucky one's that gets extremely long nasty cycles. And each one gets longer....

I would define chronic as having no more than 30 days PF for the rest of your life.

And there are a few people here like that. So when you think "why me" and "I just can't take it anymore" and thoughts like that, just remember that you are very lucky because it IS going to end soon. The headache and the cycle...

But for the "true chronics".... I don't know what to say... They are beyond needing or wanting sympathy, so all I can do is salute them for being so strong. Because through no choice of their own they have evolved into the toughest people in the world. But only we can understand that.

So cheer up you crazy little clusterheads! I know that shit hurts BAAAAAD! But frankly it makes me chuckle seeing so many of you get all worked up and worried about being chronic when you hit the 3rd month! [smiley=laugh.gif]
Again, I'm not trying to diminish the magnitude of your suffering and pain for I have danced hard for many years, but....
When you hit the 3rd YEAR start worrying about being chronic. ;)

Title: Re: Dear Chronics
Post by Superpain on Jun 15^th, 2004, 5:05pm

on 06/15/04 at 16:45:15, ChRoNiCk wrote:

Sounds like you need a new doc...
Prednisone broke me out like a 15 yr old living in a bag of french fry's... It took 2 months for my chest and neck to clear up. But it kicked ass on the headaches.
But Pred is just a short term preventative to be used while starting a long term prevent like verapamil, depakote, topomax, etc...

As has been discussed many times here a majority of our experiences have led most of us to believe narcotics not only do not work, but lead to more headaches. And it looks like you agree...
I'd strongly suggest you try O2 if you haven't already.
And imitrex is some pretty good shit too for most of us....

Title: Re: Dear Chronics
Post by Gator on Jun 15^th, 2004, 11:56pm

Quote:

Posted by: ChRoNiCk Posted on: Today at 15:45:15
MRI came up with nothing out of the ordinary. Both my GP and neurologist say its cluster headaches. I get them on both sides of my head. I guess the headaches I have all day are what you would call shadows, but they are still pretty nasty. The attacks last anywhere from a couple of minutes to over an hour(these long ones make me wish someone would just put me out of my misery sometimes). Somedays I'll just have the bad shadows all day, most of the time i get 2 or 3 attacks a day. So far the only preventative med I've tried is Prednisone, didn't do jack except give me bad acne. As for aborts, fioricet, ultracet, fiorinoul, cafergot, and most recently relpax. All of these worked kinda well for the first day or two, then they really stopped. The relpax does a pretty good job of dulling the headaches, but so far nothing completely takes them away.

I don't mean to second guess a neurologist and a GP and I certainly am not trying to dimish your pain (Pain is Pain), but both sides of the head are EXTREMELY RARE. Attacks of 2 minutes to 120 minutes denote Paroxysmal Hemicranias, not Cluster Headaches.

If you have not tried Indomethacin, try it. It almost 100% effective on EVERYONE with Paroxysmal Hemicranias. The worst that can happen is it will not work.

Prednisone is a transitional drug that is used to keep you pain free while the preventative kicks in - it is NOT a long term treatment due to some nasty as$ side effects. Acne being a more mild one.

Ask your docs to try verapamil 1st and then topamax as preventatives. You might also check into melatonin.

Imitrex Injections, Imitrex Nasal or Zomig Nasal Spray are a few true abortives. You can't really abort with a pill. It takes too long to get into your system.

Besides the reading material on the left, here are some other things to look at:

http://www.future-drugs.com/admin/articlefile/ERN020304.pdf

This is the new IHS Classifications Guidelines. You cannot print it, but you can read it.

http://216.25.100.131/ihscommon/guidelines/pdfs/ihc_II_main_no_print.pdf

Title: Re: Dear Chronics
Post by dabar on Jun 28^th, 2004, 1:57pm

My HAs started in 1997, when I was 20 years old. At the beginning, my doctors called them migraines. It took a few years, but they became more frequent and gradually developed the cluster-like symptoms - tearing eyes, runny nose, the inability to do anything but wander around in circles during attacks.

Maybe I don't fit the chronic definition, but for four years I have had few HA-free days.

Prednisone gives me a week or two of vacation. I also had this strange breakthrough when I took a two-week trip to Guatemala.

But otherwise I rely on Verapamil to take the edge off the HAs, and ibuprofen no more than two or three times a week to clear things out when I need to function. Sometimes a cold icepack on my neck and a hot washrag on my eye/forehead helps.

I wouldn't describe my headaches as beasts right now. More like a domesticated dog that gets me up in the morning with its noisy barking.

Title: Re: Dear Chronics
Post by hdbngr on Jul 7^th, 2004, 1:20pm

I got a really bad headache in April of 1997 and it's still here....so seven years and counting. It will spike up and it will go down, but it never leaves. I give thanks for the days it stays at a 2, and I give thanks for the days it only spikes at a 4, and I pray at a 6 that it won't get any worse, all of you know the drill.

I have been lucky as of late, only 2-4 hits per day and I'm chalking it up to a combination of the occ. stimulator and using Zyprexa as an abortive. Time will tell.

Title: Re: Dear Chronics
Post by Prense on Jul 8^th, 2004, 9:18am

on 06/28/04 at 13:57:47, dabar wrote:

and ibuprofen no more than two or three times a week to clear things out when I need to function.

[smiley=huh.gif]

Title: Re: Dear Chronics
Post by Curtis_Russell on Jul 8^th, 2004, 2:43pm

I had them every day for over 3 months this year until I discovered the homeopathic remedy Lycopodium clavatum 30ch. It only works if the headache usually starts on the left and sometimes or even always moves towards the right. One pill every 3 hours until you feel better. It's kept me at no higher than a level 2 headache for 2 weeks now.

Title: Re: Dear Chronics
Post by Chronic on Jul 8^th, 2004, 3:15pm

I think I may have finally joined the exclusive few. What luck!!!! My CHs started up again November 2003 and they have been getting stronger ever since. The past few months have been brutal. No medication is working for longer then two days, and it's usually just reducing the attacks to 1 or 2 a day (I think Prednisone may have given me 3 PF days at one point?). I gone through Verapamil, Prednisone, Depakote, Lithium, Zomig, Zonegran and one other stronger steroid. The results are in, I'm F'ed. It seems that if I'm lucky enough to get a few days off, they are just building up to explode the next day in a massive wave a blinding, piercing, stabbing pain, stronger than ever.

Well after 17 years as an eposodic, I think I may be joining the dark side. The cycle before this one lasted 14 months, but then I got a year repreive. This ones 8 months strong and getting more potent. I guess I'll never see the bottom of a beer can again.

At least I still have my sanity......

duhh.....duhhh....duhhh.....french toast please

One thing for the rest of you Chronics, how can i afford the Imitrex. I'm trying to use as much oxygen as possible, but I'm going through one multidose vial a day (3 shots). My insurance company won't let me run through more than two 5 vial prescriptions a month.

Thanks for any info....

Title: Re: Dear Chronics
Post by Superpain on Jul 8^th, 2004, 4:23pm

on 07/08/04 at 15:15:34, Chronic wrote:

If it's any hope for you, I'm episodic and my last cycle was over 2 yrs, and now I'm PF again. Next time... I don't know... Might be chronic for good too. :(

Title: Re: Dear Chronics
Post by Tiannia on Jul 9^th, 2004, 5:20pm

on 07/08/04 at 15:15:34, Chronic wrote:

One thing for the rest of you Chronics, how can i afford the Imitrex. I'm trying to use as much oxygen as possible, but I'm going through one multidose vial a day (3 shots). My insurance company won't let me run through more than two 5 vial prescriptions a month.

Thanks for any info....

That is a lot more then many of us get. And the vials are better then those that have to use the tip to the left. Use as much O2 as you can and stock up on the trex when you can. Ride out the attacks so that you have extra trex when you need it....

Enjoy the time that you have between the HA...

That is about the only advise that I can give you. Dont know if I am Chronic or not. I have been dancing with the Beast at night for almost a year now and the longest break I got was 12 days about 3 months into it. Other then that, it has been constant, anywhere from 2-9 times a day. I have cycles within my cycle I guess cause I go down to only a few a day, then I get blasted like there is no tomorrow, and I am back up to 9 a day. Right now I am happy to get 1-2 a night and just shadows during the day. So I count this as a good time. I can drive home without having to give myself a bruse on my leg to focus on something else besides my head..

Try the lithum / verapramil combo, others here have had good luck with the two together while seperately it really did little to nothing for them.

Quote:

If it's any hope for you, I'm episodic and my last cycle was over 2 yrs, and now I'm PF again. Next time... I don't know... Might be chronic for good too.

Chris, I loved meeting you and it never would have happened without this board. But you are absolutly not allowed to ever get these things again. ***hands on hips, tapping my foot and pulling the full mom thing out**** Honestly hun, I hope that you will be one of the lucky ones that have their last HA and never have to face the beast again. I am so happy that you are PF. I know I keep saying that, but it really is awesome.

-Tia