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        Cluster Headache Help and Support >> Cluster Headache Specific >> Episodic Morph to Chronic Survey
        
(Message started by: Ozark_E on Nov 7^th, 2006, 2:35pm)

Title: Episodic Morph to Chronic Survey
Post by Ozark_E on Nov 7^th, 2006, 2:35pm

Folks,
Bothofus' thread and simiar thoughts of mine lately have got me wondering about people who have transitioned from episodic to chronic sufferers in the past. In other threads, people have suggested that verapamil might be a culperate, and perhaps other medications.

So I am hoping that people can post their experiences if they have gone from episodic to chronic, were they on particular pharmasudical medications during that time? Do they suspect those as culperates? Have they transitioned back to episodic in relation to giving up medications?

Title: Re: Episodic Morph to Chronic Survey
Post by AussieBrian on Nov 7^th, 2006, 9:51pm

I recently copped it for eighteen months straight but these were three distinct cycles back-to-back with perhaps a fourth one thrown in just for the fun of it. I don't use any medications at all so can't comment on that side of it.

Title: Re: Episodic Morph to Chronic Survey
Post by kcopelin on Nov 7^th, 2006, 9:57pm

I went from episodic since 1981 until Feb 2005. This cycle I started pred taper and verap-not a new treatment. CH more intense and had daytime hits so upped verap. Added Vicodin-lets not even got there-am at 360 mg verap-low blood pressure prevents upping it more-and I am still in cycle. I suspect the verap, yeah. Actually-its a two-edged sword-is it taking it at all or am I not taking enough?
PFDAN y'all
kathy

Title: Re: Episodic Morph to Chronic Survey
Post by Linda_Howell on Nov 7^th, 2006, 9:58pm

Started my headaches 19 yrs. ago.

I was on 02, Verapamil and Caffergot.

Episodic for about a year.

Got off the Verapamil and went chronic.

Doubt that helps at all.

Title: Re: Episodic Morph to Chronic Survey
Post by georgej on Nov 8^th, 2006, 12:49am

Episodic since 1966. I haven't medicated since the mid-seventies. I've never gone chronic. Have never used verapamil.

Best wishes,

George

Title: Re: Episodic Morph to Chronic Survey
Post by davyp on Nov 8^th, 2006, 3:24am

Was an undiagnosed episodic sufferer for many many years and it wasnt until i turned chronic that i even heard of CH.

Dape

Title: Re: Episodic Morph to Chronic Survey
Post by bothofus on Nov 8^th, 2006, 4:35am

Ok, let me jump in here. I don't know what is going on with these HA this time, cycle, or extended cycle, or whatever ya want to call it. I do know that I have never had a cycle last this long. First cycle I ever took verapamil.
Coincidence, going chronic, verapamil, or just an extra long cycle?
I am now taking 400 mg a day. Had one at bedtime last night, had to shoot it with the trex. Becoming a nightime routine. Was hoping I could wait until after the holidays to make an appointment with a neuro or HA specialists.
Anybody know of a good one in Austin, Temple, or the Bryan/College Station area?
Carl

Title: Re: Episodic Morph to Chronic Survey
Post by taraann on Nov 8^th, 2006, 8:45am

Episodic for years, then got dx and started preventatives (first propanolol, nabumatone, etc, then later was lithium and verapamil, with always the pred taper thrown in here and there) I also tried all, well most the abortives out there (o2, zomig, maxalt, imitrex, stadol, etc etc)

Don't know if it's related or not but once I started trying all those diff med to get through a cycle it seemed my cycles would get longer and harder till the cycle just didn't end. Then again I've been totally med free many times but still remain chronic nontheless.

Title: Re: Episodic Morph to Chronic Survey
Post by Barry_T_Coles on Nov 8^th, 2006, 7:59pm

My first was back in 1999 and lasted for 10 to 12 weeks (Doc & I thought it was a virus, didn’t know about CH) nothing for 5 years and then it was back again, same as before but this time the hits kept going and I've been chronic since.

Cheers
Barry

Title: Re: Episodic Morph to Chronic Survey
Post by paul2006 on Nov 8^th, 2006, 9:17pm

Episodic for about 6-7 years then went chronic. No medication whatsoever caused that change.

I didn't get verapamil until 6 months of other meds failing me.

I KNOW everyone is different, but I swear that verapamil works... as long as you get the dose right.

I'm sorry, but I can't understand how anybody can cope with CH without any meds. I have NEVER taken so much as an aspirin and refused all sorts of drugs for different conditions...

CH without meds??? Sorry, I can't see how its possible. I tried.

Title: Re: Episodic Morph to Chronic Survey
Post by Charlotte on Nov 9^th, 2006, 9:23am

I don't think meds make you go chronic, but some combinations work better together or work against each other, in my experience.

When I can swing it, I think less or no meds is best. Other time periods, I need the meds.

Charlotte

Title: Re: Episodic Morph to Chronic Survey
Post by LeeS on Nov 9^th, 2006, 10:15am

My original episodic cycles were haphazard but averaged out at around four weeks on followed by six weeks off. Imitrex and O2 always worked well for me, but not well enough. My neuro prescribed verapamil, but for a number of reasons (not least because I thought it may make me chronic) I never did take it. I went chronic anyway – go figure.

I therefore blame the trex ;)

-Lee

Title: Re: Episodic Morph to Chronic Survey
Post by Kevin_M on Nov 9^th, 2006, 10:47am

I've seemed to gradually just progress all along the way. First episode to the second one was a year and a half apart, after that yearly, then twice yearly, all three month episodes. Duration went to nine months at a time then just stayed.
Along the way I used trex, and verapamil later as it continued to be prolonged. I can't say for sure if it was a natural progression or if the meds caused the progress. The frequency kept up later after barely using trex again and I happened to stay in cycle year round after the verap. It is difficult for me to distinguish if this was going to happen anyway or otherwise, I see different patterns for most all and I may lean toward meds providing relief but maybe instilling the progression also for me, relief being the vastly important part.

Title: Re: Episodic Morph to Chronic Survey
Post by Sandy_C on Nov 9^th, 2006, 3:04pm

on 11/08/06 at 21:17:41, paul2006 wrote:

Paul, it is possible. Several of us are coping without meds, me, because my last cycle I learned that the majority of the meds prescribed for CH as abortives and prevents - could kill me because of my medical history, and the medical history of my family.

My cycles are typically short, usually 8 to 9 weeks (although the last one was 12, with 4 weeks PF, then another 4 weeks on the opposite side of my head), I typically have one to two hits per day (sometimes at night, but not every night), and mostly in the 5-7 range on the kip scale. Note - my last cycle, I relied on trex to abort. What was normally an 8 week cycle almost doubled in length, number of hits went from 1 to 2 to 2 to 4 hits per day, and the kip scale went higher. I'm going back to no meds - trusting in 02, ice, water, and Melatonin at night. I am also trying one of the alternatives right now in the hopes of completely avoiding the next cycle completely.

CH will not kill me. Yes, I know if my alternative doesn't work my next cycle will hurt like hell, I'll be "doing the dance", rolling on the floor, banging my head - but I'll still be alive. I can and will get through it. To me, it's better than dying.

Sandy

Title: Re: Episodic Morph to Chronic Survey
Post by Ozark_E on Nov 10^th, 2006, 10:17am

Please read the "Trex good or bad?" thread in the MEDICATIONS, TREATMENTS, THERAPIES Forum. This partially answers my original question in terms of Imitrx possibly extending the duration of cycles (not necessarily turning episodic to chroinc). Very informative though.

Title: Re: Episodic Morph to Chronic Survey
Post by artemis on Nov 10^th, 2006, 1:40pm

Well, its just a crap shoot huh? I hate to think the medication I take could make the headaches last longer. My doctor doesn't seem to know much. You guys know more than he does. And you even have a doctor here! So I'm on 240 mg of calan (verapamil) is that not enough, or should I just stop taking it?
artemis

Title: Re: Episodic Morph to Chronic Survey
Post by JeffB on Nov 10^th, 2006, 1:45pm

I have taking Verap for 2.5 years, just upped the dose to 240. Haven't been hit in a long time.

Title: Re: Episodic Morph to Chronic Survey
Post by bothofus on Nov 10^th, 2006, 7:48pm

I believe this thread didn't intend to discuss the meds working or not working. It was an attempt to find out if others have experience with, or suspect that some meds may prolong the CH cycle.

By all means, if the meds are working for ya, then great!

Carl

Title: Re: Episodic Morph to Chronic Survey
Post by taraann on Nov 10^th, 2006, 9:21pm

on 11/08/06 at 21:17:41, paul2006 wrote:

I have gone medfree many times over the years. I am really med resistant, and have tried just about all the aborts and prevents out there (well not all I'm sure but way tomany to list) so out of frustation I said screw it and went off meds and tried to look into home remedies, such as morning glory seeds. Nothing has worked .... went back on meds...lost insurance, got insurance back...went back on meds, so on and so forth. I'm chronic, and med free even without a break in CH's can be done. Esp if you are used to meds not working or not working well enough.