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(Message started by: BarbaraD on Oct 27^th, 2003, 1:17am)

Title: Chronics and Episodics
Post by BarbaraD on Oct 27^th, 2003, 1:17am

Today I had a conversation with another chronic sufferer and we were talking about the difference between chronic and episodic sufferers and how we describe things differently.

When we (chronics) say we're in "remission" we don't mean we don't have headaches or that we're "cured" - we just really mean (most of us) that we're not hitting 10s 6 or 8 times a day.

For me, living with a 3-4 is "remission" - When it gets to a 6-7, I've got a "breakthru" and when it gets above that - I'm getting "hit" hard. I can live with a 3-4 -- It's the 8-10s that eat my lunch.

When I was episodic, I got "hit" for about two months (usually at night) and then they went away for several months until the next time.

When I went into remission in 1999 with topamax after being chronic for (a lifetime) two years I went to about a 3 and usually maintain that unless I get a breakthru.But being "pain free" - Geezz! I can't even remember being that since about August of 1997.

Now for the past couple of months, Mr. Demon has been back asking for a dance and nothing seems to be working very well. Tonight I started back on DHE and that stuff is AWFUL, but usually will break a cycle for me. This is the longest bad one I've had since going on the topamax. Maybe I can level back out at a 3.

Nancy just thought I ought to explain that to ya'll who are episodic - that us chronics aren't pain free when we say we're in remission - we just mean we're not hitting 10s all day.

Maybe someone ought to write a Clusterhead Dictionary.

Hugs BD

Title: Re: Chronics and Episodics
Post by ClusterChuck on Oct 27^th, 2003, 1:32am

Barbara, good topic.

I often feel funny saying I am in a "cycle" when I am a chronic. But, I do seem to have "cycles" within my "chronicness". When I am not in "cycle" I get hit once or twice a day. Some of them can be in the upper KIP limits, but only a couple a day. That is the period I dream for. I can deal with those days. When I am in "cycle" I get hit as many as 12 or more times a day. This particular "cycle" has been the hardest I have ever lived through, as I have sometimes gone only 15 minutes between hits. I have gone out of one hit and then a few minutes later, right back into another one. This has gone on for days at a time. And then I might (if I am real lucky) go a day or so with few or even NO hits! But during a "cycle" the bastard ALWAYS makes up for the slow days he let me have by hitting REAL hard and fast the next couple days. It is like he has a quota to give me every day, and if he misses some, he makes sure his average hits are up within his "quota requirements".

This particualar "cycle" has been going on since the end of July, and I can't wait to go into "remission" of only one or two hits! Ahhhh!!! Those were the days !!!!

But that is the "definition" of my variation on this confusing and individualistic affliction.

Chuck

Title: Re: Chronics and Episodics
Post by BarbaraD on Oct 27^th, 2003, 2:30am

Yeah, that's what Nancy and I were talking about - we're a little different breed from episodics. We've got the same freakin' headaches, but they're different in HOW we get them.

Right now, my poor dog (Gunther) is sitting here with one eye open looking at me as if to say, "Are you going to scream and wake me up again or are you going to let me get back to sleep for a while?" Rudy (the other one) has hidden under the bed and is not coming out for the night (he's been thru this more years than Gunther). Poor Bill has gone to our Son's for the night. Mommy is NOT good to be around tonite. She's got one of her "little headaches!" And she's on that medicine.

You know, this is the time I WISH narcocotics worked. I'd be out cold right now, but..... they don't so I'm sitting here typing instead. Go figure. Whine whine whine....

Hugs BD

Title: Re: Chronics and Episodics
Post by nancyc on Oct 27^th, 2003, 2:33am

I cant even explain my cycles, as you call them Chuck..opps, for those of you that dont know, i am chronic too...I have basically been pf for the last year...Atleast what I call pf...I have only had about three breakthru periods since my new neuro put me on my cocktail of drugs...Before that, I went thru a ten month period of getting hit about six to eight times a day....Before that, I would have periods of remissions where I would only get hit a few times a week but it seems like the beast did not want me to have a life so he came back with a vengance...thank God, we found the ammunition to keep him at bay , atleast for now anyway... :Dnancyc

Title: Re: Chronics and Episodics
Post by ave on Oct 27^th, 2003, 3:46am

When I got started on this "game" I was episodic.

Then I got myself shrooms. Now I am practically pain free all of the time, BUT THE DEMON IS STILL THERE...

There are cycles within this weird condition, where I have reminders, one to three times a day. No pain, just some irritation, a frisson, a little jab of a millisecond, a pulling sensation; nothing to complain about - except that the demon is still there.

At the moment I am between high cycles. The reminders may come as far between as twice a week, although they peak a little higher now and I have more irregular sleeping habits, which for me used to go with the start/finish of a cycle .

I have said this before, I seem to be a low or minimum level chronic. For that reason I was not allowed to take part in the clinical study that was going on last year.

And if I never had the big attacks I would not have known what was going on with me.

Weird.

Title: Re: Chronics and Episodics
Post by Margi on Oct 27^th, 2003, 11:05am

Good topic, Barb. I firmly believe that chronic cluster and episodic cluster are two different species of cluster headache, and need to be treated as such. You chronics definitely do have cycles of peak attacks and then you do ebb down to a low cycle at times too.

I sure wish we could find the "off switch" for you folks, like we are lucky enough to have for the episodics.

(I think this is a really good topic for OUCH to push for research.)

Title: Re: Chronics and Episodics
Post by Linda_Howell on Oct 27^th, 2003, 11:26am

I'm with Chuck on this one. I don't call it a remission. I call it my cycle with-in a cycle.

LindaH

Title: Re: Chronics and Episodics
Post by BarbaraD on Oct 27^th, 2003, 12:03pm

"You chronics definitely do have cycles of peak attacks and then you do ebb down to a low cycle at times too."

Margi,
I think that's the trouble with episodics NOT understanding us chronics. We don't EBB down to a low cycle at all - at least some of us don't. We're more (for want of a better word) ON GUARD all the time. We're not EVER 'out of cycle' - we're just what we usually call "in remission", but it doesn't mean the same thing for us as it does for episodics. We NEVER know when we're going to get hit. We can be fine in the morning and having a great lunch and BAM! No warning! We don't have a couple of months a year we can take off from being human and then go back to business as usual. We have to learn to 'build our lives' around these damn things.

I'm not jumping on you cause I know there's no way you can even imagine the pits of hell a chronic sufferer has gone through (or does go through). You've been a wonderful supporter and have done great things in getting other supporters to try to understand the plight of CH sufferers. But you've had first hand knowledge of supporting an episodic sufferer.

In talking with episodics, I hear, "When I was in my last episode...." and I think, "my last episode started in 1997...." I can relate to the HAs, but after years of not being PF, I can't relate to getting over them any more. That's where Chronics are different.

And from the posts above - WE all react differently to our attacks just like episodics do. Are we EVER going to find a commonality?

But it all goes back to what Nancy and I were talking about . We just want someone to UNDERSTAND what we're going through. Thank goodness for ch.com.

Hugs BD

Title: Re: Chronics and Episodics
Post by 9erfan on Oct 27^th, 2003, 12:12pm

I'm another chronic. When I get hit with the 10's several times a day, I refer to it as an "episode". The episode usually lasts about 3-4 weeks for me then I go back to the daily 3's, 4's, 5's. The episodes tend to hit about every 3 or 4 months.

Title: Re: Chronics and Episodics
Post by Margi on Oct 27^th, 2003, 12:41pm

Barb, you're right - Mike and I have never lived with chronic clusters and I selfishly hope we never have to. I am continously amazed by how you chronics and your supporters deal with life. Jackie and Blake come to mind as my idea of the ultimate in how well they cope. I'm praying every day that Blake is able to stay in his low cycle because of the Topomax.

Thanks for explaining your pattern, Barb - the other chronics that I've spoken to over the years here do report lower cycles (Ted, Blake, Jayne Salters.....Jonny even had a relatively pain free period this year before you came back, but I think that's the first time I've seen that happen for him).

I hope you didn't misunderstand me by mentioning a low cycle, thinking that by that I meant no pain at all? Because that's not what I was saying. I know you guys and gals don't ever go totally pain free and that continues to break my heart. :(

Hugs to you, Barb, and pats to your boys. I've missed seeing your thought provoking posts on the board here.

p.s. just re-read this and realized that my wording is funky when I'm talking about Jonny's pain free time. Barb, your coming back didn't end his pain free time, don't read that the wrong way!! :o LOL Gotta be so careful here anymore that our posts don't get misinterpreted! :)

Title: Re: Chronics and Episodics
Post by hdbngr on Oct 27^th, 2003, 2:38pm

I think another barrier many of us have encountered in distinguishing episodic and chronic is that most chronics are chronic because there doesn't seem to be a medication combo that consistently helps, preventative, abortive or narcotic. We have the pain, the cycles within cycles, but we can't reach for the Imitrex, prednisone or O2 to stop it.

I used to rack my brain trying to figure out: What did I eat? Did I move my neck wrong? Headlights at night? Car too hot? Weather front coming? While these things still impact us, the headaches happen anyway, no matter how careful we are. When you are chronic, there is not time off for good behavior.

My defination of chronic - complete loss of control.

Title: Re: Chronics and Episodics
Post by BarbaraD on Oct 27^th, 2003, 5:10pm

I think you just said a mouthfull. Loss of control.

That's the part that smarts. You plan something and then at the last minute (or in the middle of it ) oops - gotta go... I've gotten to the point that I NEVER promise a child anything. The night my grandchild was born I got hit three times. I was there when he cried the first time, but my kids will NEVER know what it took to stand up (and my son's mother-in law doesn't know how close she came to getting thrown through a brick wall, but that's another story).

Friday night Granny has to dress up as a clown and go trick 'r treating with the baby. I'm already dreading the wig and nose. That's why I'm on the DHE today - tryiing to break these HAs enough to get thru it.

Chronics go thru things that people in their right minds wouldn't dream of. Then some idiot looks at us and says, "Well you look ok!" Some days I think murder should be made legal.....

Hugs BD

Title: Re: Chronics and Episodics
Post by ClusterChuck on Oct 27^th, 2003, 5:38pm

One point I need to point out loud and clear, incase you are reading the wrong thing into the above comments!

I don't want ANY one to think that I am bitching because I am chronic and "have it worse than you eposodics" !!! NOTHING could be further from the truth. I sometimes feel that eposodics have it worse than I do, as you get a normal life, and then SLAM you get nailed. My heart bleeds when I hear of ANYONE suffering through this curse.

I am chronic. Oh well! This is the hand I was dealt with, and I have no choice but to play it out. As a chronic, I have had to mould my life around, or sometimes through the condition. I am not any better or worse than ANY of you. We are all in pain, and that hurts me. I will even go so far as to use that word that some of you hate to hear, MIGRAINES! Yes, you, too, are in severe pain, and I pray for releif from all your pain too.

So please, eposodics, don't think I (or I hope ANY of us chronics) are belittleing your suffering. We all feel bad that anyone has to suffer from any version of this condition.

That said, now GO OUCH!!! Help find a CURE for ALL of our pain!

Chuck

Title: Re: Chronics and Episodics
Post by hdbngr on Oct 27^th, 2003, 5:38pm

It's amazing how many personal events in life are rated not because they were special (they were) but because they were memorable because we were getting hit and trying to get through without the world knowing.

I hardly left the house the first year, so afraid of the attacks. By the second year, my husband didn't want to go anywhere either. Too afraid of getting far from home, away from safety, seclusion, meds, O2 to leave. We mostly got over it the third year, but we still plan our lives around the CH.

I wonder where we would be if the last few years of our lives had been pain free. How far would we have gone in our relationships, careers, homelife, as parents, as friends?

To play devil's advocate here, I know I appreciate the "less pain" days so much, that I remember them with a pure clarity. I have often wondered if I would have appreciated those little moments in life as much.
Granted, now that I have this clarity, I wish for a cure!

To all the moms, dads, and grandmas willing to dress up as clowns and go trick or treating with their babies even when they feel bad - you know what's important. Kudos for making the effort.

Title: Re: Chronics and Episodics
Post by Prense on Oct 27^th, 2003, 7:13pm

I cannot figure out my pattern. I can go a few days with notta, then out of no where BAM! Last week; mon and tues PF, wed hit, thurs PF, then 4 hits over this last weekend. That's pretty much been my story... I like to think the verapamil has been helping, but it doesn't...I'm only kidding myself when I believe otherwise. Some things I know for sure...trex works!, O2 "helps", acceptance has made CH easier to deal with, and this board kicks ass!

On the bright side, I have my appointment with Dr. Katzman on 30 Oct...she runs the HA clinic at the university of NM. I must admit...I have high hopes. I waited 3 months for this appointment! Here's to not getting let down...

Seriously, I plan to suggest adding lithium to the verap. I really hope for some results. This is the last little glimmering light at the end of my medical tunnel LMAO.

Anyway, got off on a tangent...cycles...what's that? I have not had a remission period yet. Guess we all explain things differently, chronic or not.

Good point Chuck! This is the hand we gotta play.

Chris

Title: Re: Chronics and Episodics
Post by jonny on Oct 27^th, 2003, 7:23pm

on 10/27/03 at 19:13:48, Prense wrote:

Seriously, I plan to suggest adding lithium to the verap. I really hope for some results. This is the last little glimmering light at the end of my medical tunnel LMAO.

If it works for you like it has worked for me bro you will be in heaven.

Good luck to you, man

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

Title: Re: Chronics and Episodics
Post by BarbaraD on Oct 27^th, 2003, 7:31pm

I guess with Chronics - we're in the middle of the war - we KNOW there's bombs going off all around us and about when and where they're going to hit (sometimes)

But with episodics - they know there's a TIME BOMB somewhere set, but don't know when it's going off (maybe some have an idea, but).

Both sides have BAD sides don't they.

I still think murder should be legal in all 50 states..... but only for CHers......

Hugs BD

Title: Re: Chronics and Episodics
Post by Patrick_A on Oct 28^th, 2003, 12:23am

I am episodic. During my cycle, i am at the same point as a Chronic. I get 4 to 8 CH's a day, and during the middle of my cycle, i am getting Kip8 thru 10. I struggle everyday finding reasons to live. I go through the "Why me phase". I get mad, and i get depressed. But when it is all over, i say a silent prayer to myself. I say ...."Thank God, I am not chronic"
Chronic CH'ers have all of my sympathy, I don't want what you have! You have my full support!

Patrick