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(Message started by: boonie on Jan 16^th, 2004, 2:16pm)

Title: chronics
Post by boonie on Jan 16^th, 2004, 2:16pm

I have a question for the chronics, are all your days the same throughout the year or do you have times that worse than others.

Jim

Title: Re: chronics
Post by Carl_D on Jan 16^th, 2004, 2:19pm

There are some good days (only comes on during rest or sleep), and then there are days you don't get shit done because you are geting hit constantly. The one consistency is that you will get them. End of story.

Peace,
Carl D

Title: Re: chronics
Post by Renee on Jan 16^th, 2004, 2:24pm

My story is the same as Carl's. I can add that I suffer more daily ha's each day during the late fall and early winter than in the spring and summer.

renee

Title: Re: chronics
Post by jonny on Jan 16^th, 2004, 2:33pm

Before meds it was like Carl....Since ive found my magic cocktail of prevenitive meds my foot is so far up the beasts ass im bashing him in the friggin brain 90% of the time.

...................jonny beast tamer ;;D

Title: Re: chronics
Post by Jackie on Jan 16^th, 2004, 2:43pm

Blake is asleep in his recliner.... ;;D so I'll answer for him.
There are good days, so/so days and terrible days.....depending on if he's in high cycle or low cycle.

Now....I have a question. According to the definition of 'chronic' he may not be considered chronic anymore...he's been HA free for more than two weeks but he's medicated and it hasn't been a year yet...hmmmmmm, I think I just answered my own question.

Jacks 8)

Title: Re: chronics
Post by jonny on Jan 16^th, 2004, 2:55pm

Jacks,

What I go by is one year without a two week period PF unmedicated.

What two people told me months ago is that they changed it to...two week PF medicated or not.

To me that is major Bullshit, how the fuck can anyone say anything medicated or not?

Know what happens 4 days after I stop my meds?...3-5 HA's a day............Know what happens when I go back on my meds?.........1-2 HA's every few weeks.

How the fuck they can change shit like that

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

Title: Re: chronics
Post by Marc on Jan 16^th, 2004, 2:59pm

Jim,

I have to go with Jackie's description - but I'll say good weeks bad weeks - a rollercoaster to be sure.

Most of the time I can get 90% control with meds, but then they break through for awhile....... Biggest problem for me is rest and relaxation - that's when I get nailed most often. During an adrenaline rush I'm safe.

Marc

Title: Re: chronics
Post by Jackie on Jan 16^th, 2004, 3:05pm

I'm with you, jonny... on the change in definition....it's bullcrap.

I remember when you tried to go med free......DO NOT ever do that again... >:(

I doubt that Blake will ever be med free...not in foreseeable future anyway. It's taken years to come up with this med combo....can't imagine changing anything now. Life is pretty good these days... :D
Praise Verapamil, Lithium and Topomax.. :P

Jacks 8)

Title: Re: chronics
Post by 9erfan on Jan 16^th, 2004, 3:42pm

Yeah, I'm with Blake. But I haven't found my med combo yet.

Trying the alternative therapy this weekend.

For me good days = 3 ha's at about a KIP 4 or 5...not too bad

Bad days = 5 - 6 ha's ranging anywhere from KIP 6 - 10

Horrendous days? = 10's every 3 hours.

Title: Re: chronics
Post by Kirk on Jan 16^th, 2004, 3:56pm

Good days 2 @ kip - 5 I can deal with that
Bad days 8 @ kip 8 -10 It deals with me.
Meds keep it bearable most of the time.

TTFN

Title: Re: chronics
Post by fubar on Jan 16^th, 2004, 4:07pm

For sure there were bad days, and worse days. I can't remember calling *any* of them good days. If I wasn't changing meds, frantically searching for an end to that hell, it probably would have been more consistent.

Now that it's over, they're all good days. Every one better than the last. I still think that somehow I'm going to wake up and this PF time will have been a dream, but as far as I can tell, I'm done with this shit.

-Fu

Title: Re: chronics
Post by ClusterChuck on Jan 16^th, 2004, 4:07pm

Normal for me is one or two a day. Every now and then I get a day of none. But then, I have "cycles" where I get nailed. Been in one now since July. 6 to 12 hits a day.

Can't wait to get back to one or two a day!

Chuck

Title: Re: chronics
Post by Roxy on Jan 16^th, 2004, 5:34pm

on 01/16/04 at 14:43:23, Jackie wrote:

There are good days, so/so days and terrible days.....depending on if he's in high cycle or low cycle.

Perfect description Jackie. I think I'm due a low cycle sometime soon.....just wish it would hurry up..... ;;D

Mine seem to be all messed up right now. On Monday and Tuesday....I was up there in the 8-9-10 hits. Yesterday and today, only 5 or 6. If I get down to one or two hits.....that's PF to me.

It's never boring..... 8)

Title: Re: chronics
Post by Jackie on Jan 16^th, 2004, 5:56pm

on 01/16/04 at 17:34:21, Roxy wrote:

I think I'm due a low cycle sometime soon.....just wish it would hurry up..... ;;D

I think you are too, Sweetie. Hang in there...it's gonna get better. Bless your heart.

Love ya,
Jacks 8)

Title: Re: chronics
Post by JDH on Jan 16^th, 2004, 6:21pm

on 01/16/04 at 15:42:30, 9erfan wrote:

I can't even imagine that. You people with chronic ch's amaze me and have all my respect. How do you cope?
I have a hard enough time dealing with a yearly 6 to 8 week cycle but to deal with it EVERYDAY?!?!
PF vibes to all of you and I hope you can find something that works for you.

Jim

Title: Re: chronics
Post by Callico_Kid on Jan 17^th, 2004, 1:13am

Good days and bad days all over the place. I cannot see a pattern in mine since I got started on Lithium along with the Verap. About all I have noticed is that they are not on a regular schedule any more although they rarely get worse than a 5 or6. Most do still jit in the late evening though, which totally screws up sleep. I've forgotten what it is to get a night's sleep.

jc

Title: Re: chronics
Post by BarbaraD on Jan 17^th, 2004, 8:26am

on 01/16/04 at 14:59:48, Marc wrote:

Most of the time I can get 90% control with meds, but then they break through for awhile....... Biggest problem for me is rest and relaxation - that's when I get nailed most often. During an adrenaline rush I'm safe.

me too Marc - Seems the beast doesn't like for me to relax. Usually during stressful times - I can keep him at bay, but as soon as I relax - WHAM!

And on the days you think you're PF, I'm still "on guard" cause I know he's lurking somewhere behind my eye.

Spring and Fall are usually worse, but this winter ain't been too good either.

Hugs BD

Title: Re: chronics
Post by Prense on Jan 17^th, 2004, 11:18am

on 01/16/04 at 14:16:11, boonie wrote:

I have a question for the chronics, are all your days the same throughout the year or do you have times that worse than others.

Jim

I anticipate attacks everyday. I do not get hit in the middle of the night very often, thank God! There are rough days and there are good days for sure. I have had 8 days PF in the past. That is a definate vacation! Normally, I am taking about 30 or so hits a month these days. I have had no success with preventatives, but imitrex has definately given me my life back. My neuro wishes I could reduce my trex intake. I told her that I will when she starts preventing attacks...

I do not know if I could handle episodic cycles. Yeah, it's alot of PF time, but the change in lifestyle once a year...wondering when it is going to happen, etc.

I don't mind being chronic.

Chris

Title: Re: chronics
Post by Jayne on Jan 17^th, 2004, 11:28am

well before I started taking the Lithium (((((((Lithium))))
along with my verapamil. I would definatley have two BAD periods of HA's a year. One in the winter and one in the summer, where it seems my meds were doing nothing. In between those times my meds would keep them mostly at bay.
Since the lithium I have not had a HA since Dec 21st. I even went out for a drink last week and got a little merry and no HA's which was unbelievable to me. Usually I would have to pop a zomig or an imitrex pill if I wanted to have a drink, and I would still get hit later in in the middle of the night.
Hey question for Jonny..before you were on your lithium and verap...I'm talking no meds. Was alcohol still not a bother to you?

Title: Re: chronics
Post by JDH on Jan 17^th, 2004, 11:38am

on 01/17/04 at 11:18:40, Prense wrote:

I do not know if I could handle episodic cycles. Yeah, it's alot of PF time, but the change in lifestyle once a year...wondering when it is going to happen, etc.

I don't mind being chronic.

Chris

I guess that will always be the argument between chronic's and episodics.
It just seems to me that as devastating as it is when my cycle rolls around it can't possibly be as bad as taking those hits on a daily basis. I mean I just shut down when a cycle starts. I get depressed, irritable and basically not a good person to be around. I don't know if I could handle what you people go through but if I had to go through it I know I would be in good company.

Jim

Title: Re: chronics
Post by Prense on Jan 17^th, 2004, 11:40am

on 01/17/04 at 11:38:43, JDH wrote:

I mean I just shut down when a cycle starts. I get depressed, irritable and basically not a good person to be around.

I know what you mean dude!

As a chronic, I don't get depressed, irritable, etc. You just get used to it I guess. Either way CH sucks ass!

Chris

Title: Re: chronics
Post by Jayne on Jan 17^th, 2004, 11:42am

no Chris clusters suck major donkey dick!!

Title: Re: chronics
Post by Kevin_M on Jan 17^th, 2004, 11:55am

on 01/16/04 at 15:42:30, 9erfan wrote:

Very good description of how I am twice a year for three months. The second and third month are all bad and horrendous days, then back to bad, then good after three months. PF though is actually about five months a year. I got good sleep ( at least 6 straight hours) just starting to come around since last October, this period is starting to wane. I don't trust those PF periods though and still carry meds. "It" still lets me know it has residency and it's lease is not up sometimes.

Title: Re: chronics
Post by JDH on Jan 17^th, 2004, 12:24pm

on 01/17/04 at 11:40:39, Prense wrote:

CH sucks ass!
Chris

on 01/17/04 at 11:42:03, Jayne wrote:

clusters suck major donkey dick!!

Fuckeneh! you're both right!
we do agree on that.

Jim

Title: Re: chronics
Post by jonny on Jan 17^th, 2004, 1:53pm

on 01/17/04 at 11:42:03, Jayne wrote:

suck major donkey dick!!

Im just mule but will I do?....LMMFAO ;;D

Gotcha Jayne

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

Title: Re: chronics
Post by Roxy on Jan 17^th, 2004, 4:27pm

on 01/17/04 at 11:28:57, Jayne wrote:

Hey question for Jonny..before you were on your lithium and verap...I'm talking no meds. Was alcohol still not a bother to you?

Jayne...I'm not jonny, but can I answer this too??

I was chronic for quite awhile before taking any meds, and I'm back pretty much med free right now. Alcohol never bothered me with or without meds. Same difference no matter what. The only thing I've found is there are two types of alcohol I have to stay away from. They won't trigger me, but if I can feel my head at all.....they will aggravate it. Beer and red wine. Everything else is ok. Last beer I had was on the golf course at the convention.....bad idea...LOLOL.

These headaches are vicious and relentless.....I've found, with me, nothing makes them different....they just are....every fucking day.

Title: Re: chronics
Post by jonny on Jan 17^th, 2004, 4:40pm

Sorry Jayne....didnt see that question earlier.

Thats a hard one to answer, I was getting hit but dont know if I got hit more cause of the beer......I imagine that if beer was a trigger it would trigger me now that im on meds.

Put it this way....I dont give a fuck one way or another, Ive got my boot so far up the beasts ass right now I wish I could share.

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

Title: Re: chronics
Post by Jayne on Jan 17^th, 2004, 5:17pm

It seems for now I have my stilleto heel up the beasts arse as well.
ah sweet justice.

Title: Re: chronics
Post by Mikey on Jan 17^th, 2004, 6:01pm

I have bad times and really bad times!! I can't tell you the last time i had a good time with it at all. I'm still looking for my magic combo, and it's been a very long time coming!! I don't know why i haven't been able to find it, because, so far, i've tried every combo that the Docs and myself, and others could possibly think of along with alternative medicine as well. Right now i'm on an cocktail that seems to help, but very little.

Still looking, and still trying!!!!!!!!!!!

Mikey, :(

Title: Re: chronics
Post by Jayne on Jan 17^th, 2004, 6:07pm

Keep on trying Mikey...don't give up...it's sometimes tweaking dosages that's the key.

Title: Re: chronics
Post by Karla on Jan 17^th, 2004, 6:15pm

Before I was medicated I would get hit 8x a day every day year round. All of them would be 10's. I never noticed a low time or a high time. It was always the same year round. Very madining and depressing.

Title: Re: chronics
Post by Elaine on Jan 17^th, 2004, 6:28pm

I am no longer chronic, but when I was I always said us Chronics had cycles in a cycle. When in full blown cycle it was a 10 every time and back to back could last two weeks to three months. When out of cycle it would be at a low level 4 to 6 every day could last two weeks to six months. My full blown cycles were almost
always around season change.

Boonie I really enjoyed talking to you in Iowa.

Title: Re: chronics
Post by Mikey on Jan 17^th, 2004, 7:08pm

Thanks Jayne, i will keep trying, because i know that he key dosage or combo is out there somewhere!!

Mikey,

Title: Re: chronics
Post by boonie on Jan 17^th, 2004, 8:29pm

Elaine

You are a sweetheart for sure. It was our talk that prompted the question. If we ask the right questions just maybe we will find the right answers. After all who are the experts on cluster headaches. We are!!! I am planning to go to Nashville so I hope to talk to all of you again. Because the answer is with us.

Title: Re: chronics
Post by BillyJ. on Jan 17^th, 2004, 8:48pm

From the convention report for those of you who didn't
pay attention ;;D
". IHS has updated the CH criteria and Chronic is now
labeled as 1 year of CH medicated or NOT with less than 30 days of remission. "
Not sure about the medicated or not part,I guess that
means if you stop the meds and get hit then it is time
counted towards being chronic [smiley=huh.gif]
As for me,either I'm now chronic or this has been one
LONGGGGG cycle,it started 1/13/03.I am now on verapamil
960mlg/day and have the beast 90% beaten,shadows
almost daily with occasional breakthroughs.I ain't
complainin'! I'll take this over the cycles from/in hell that
I went through before meds.I wish everyone could find
that miracle med that would work for them.
PF2ALL,,,Billy

Title: Re: chronics
Post by athos12 on Jan 17^th, 2004, 11:51pm

on 01/17/04 at 11:18:40, Prense wrote:

I do not know if I could handle episodic cycles. Yeah, it's alot of PF time, but the change in lifestyle once a year...wondering when it is going to happen, etc.

I don't mind being chronic.

Chris

I would take the relief time hands down.... For me to say I don't mind being chronic, is like me saying I don't mind having a bullet in my brain 2-3 times a week...

Chris I have to say that "Balls of Titanium" comes to mind

I get hit at least weekly.... sometimes 3 times a week it is unusal to get hit more often. I range from 4-6 outside of late saturday or sunday.. then it is 8-10.. I hate sundays., even if there is football on.

Title: Re: chronics
Post by jadedgazer on Jan 18^th, 2004, 1:15pm

For me High cycle is Sept-Mar. and I take 4-10 hits a day K5-K9, every now and then I hit K10.

Low cycle is the remainder of the year, 2-4 hits a day and usually K3-K5, lots of shadowing...but that is a great time of year.

It looks like I have found a good combo of meds and maybe I have interrupted my high cycle this year! Woohoo! But, I am trying not to be too optimistic yet, could be a fluke. Time will tell.

In my high cycle it seems that the beast is more wiley and it figures things out and sidesteps whatever meds I am on. Can be very frustating.

In high cycle I have two or three really crappy days and then a lighter day and then two or three crappy ones and so on. Low cycle is more consistent on a daily basis.

Title: Re: chronics
Post by gore2424 on Jan 19^th, 2004, 8:29am

I am in pain 24/7 but only a 3 level on the meds I take but miss changing my pain patch one day kills me its a 9-10 and requires a 10 mg of morphine to get me up and about til patch kicks in. I maybe get 7-10 days a year that I am totally pain-free. yeepppeeeeeeee yeah right.
Terry (gore2424)

Title: Re: chronics
Post by Mac on Jan 19^th, 2004, 11:40am

I was just diagnosed in March. Since then I have been using 'trex nasal spray. I normally get 4 or 5 shadows a week and 1 or 2 attacks around 3-4 on the kip. Every 3 or 4 weeks I'll have 4 or 5 shadows a day for a few days. It seems like I have to top up on the Imitrex for a couple of days before it settles down again. I think it's to early to tell if this is a permanent pattern though. I consider myself lucky now because I spent 3 1/2 years of daily attacks kip 7-10 and was doing so much Drixoral (mistakenly) that I used to go to different drugstores just so they wouldn't think I had some crystal meth lab set up somewhere ::)