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Chronic vs Episodic

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Hi all,

Virtually everything in the Clusterhead toolbox works better and longer for episodics than it does for chronics. I've been wondering if maybe we could have a thread devoted entirely to chronics. They comprise only about 1/10 of CH sufferers but their pain is constant, varying only in intensity throughout the night and day. Perhaps we should first have a poll so we could know who all of our members are that are chronic and then we could find what has been effective and what has not. Any other ideas?

Ron

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Sounds like a mighty fine idea to me.

My impression has been that there are a much higher percentage of chronics here than over at ch.com - I figure it's probably because busting still tends to be approached as the last resort when it actually shoulda been the first resort.

-Jeebs the episodic CH'er

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I think you're right, Jeebs; about the higher percentage here and about the reason for it. Our remedies though, have just been thrown up in the air for anybody who wants to, to try. There's been no division among those who have benefited between episodics and chronics. Maybe if we began doing just that, dividing those who have benefitted from any particular remedy into chronics and episodics, we'd see which remedies held the highest chances of success for either group before trying them.

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I would be interested to know the stats. I just mentioned to my wife last night that since finding my way to this board it seems as if there are a lot more chronics then I remember from my days on the Ch board. I have also noticed more people diagnosed with chronic ch/ migraine hybrid although when I was diagnosed in 87 by Dr.Saper and others they called it ch/migraine variant. semantics i suppose.

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Fantastic idea!

I'm chronic, it would be nice to know if there are things different with the treatment specific to chronics vs. episodics. I know it is harder for us to bust, but once they chronic cycle IS busted, what is the time frame of taking maintenance doses? Is it the same for eposidics? Those sorts of questions.

Renée

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Good idea and totally agree. I had this for 8 years and nothing seems to work well for a long time and no meds works at all. Busting helps but not like it helps most and it seems to have lost it`s effect so i`m off busting now for a longer period. Shrooms first lost it`s effect for around a year ago and even if i had a 6 months break i didn`T get any positive effect from it. Let`s hope the seeds only need a break. O2 is now hundred procent useless. BUT i do better than ever like in general in those 8 years. I do get some good results from Russian Root. As i`m afraid of "spend" the effect up, i do not use it for a long period of time. Same with the Astaxanthin, it helps as well. Togehter with a very routined life and eating very clean foods with no triggers and lots of exercise this works great for me. But it is odd, why is it like this.

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Hey Tingeling,

I'm the same with meds. After I have taken one for awhile, my body adapts and it stops working. Then I either have to increase the dose, or switch to something else. But, what I found with Zomig, once it stopped working, I didn't take it for about 9 months to a year. Then tried it again, and it worked great. So, when my migraines were bad, I had a selection of 2 triptans and an over-the-counter migraine pill, that between them one would usually work. And by rotating them, I didn't seem to adapt as quickly.

Slightly scary thought that busting could one day go the same route. This is the sort of information we need for chronics - and episodics too, if it is the same for them.

Renée

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That said, it seems to me i`m at a point in the process where i do not need to bust. So it has done a job that`s just amazing.  I see it as i do not need to bust if i got only shadows. If i can control it with herbs f ex, why should i go for the big ammo kind of thinking.

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Sounds like a good plan me thinks, Ting. Find the solution with the least impact, and save the big guns for when they are needed.

I noticed in someone else's post, they mentioned they were left handed. Which got me wondering if there are any common threads with sufferers. Probably not. Knowing the beast, it is probably too random for that. I'm right handed for example.

But, as long as we are talking surveys, I wonder if some questions along the following might be of interest?

Do you also have migraines?

Do you also have frequent headaches or daily chronic headaches?

Do you also have ice pick headaches (primary stabbing headaches)?

If you've had your testosterone levels checked, are they low for your gender?

How old were you when you had your first attack?

Are they worse, or strike more, in the winter, summer, spring or autumn (fall)?

If episodic, how frequently are your cluster periods?

If chronic, how frequent are your attacks?

Do you find exercise helps?

What is your most effective abortive?

What is your most effective preventive?

How long do your clusters generally last?

15-30 minutes

30 minutes - 1 hour

1-2 hours

2-3 hours

When do you get hit the most often?

Daytime

Evening

When you're asleep

Weekends

Those are just some off-the-top-of-my-head questions. Perhaps there are more, or some of those could be removed. Just an idea.

Renée

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Very interesting article. I really enjoyed all the other names for CH.  "erythroprosopalgia of Bing" is probably my favourite.

I actually wonder, a little, if I have chronic PH instead of CH. Mine are typically quite short, often under 15 minutes, sometimes only a minute or two, and I can have 1-5 a day. I was originally, and clearly, diagnosed with CH, but I wonder if things have shifted a bit. OUCH says PH is easily treated with indomethacin, which I happen to have. And they say if indomethacin doesn't work, than it is a cluster headache and not PH. Hmmm, interesting.

Also, by the definition given, I am definitely chronic. 1 year plus with an average 3 day gap between attacks, and a max of 11 days.

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I actually wonder, a little, if I have chronic PH instead of CH. Mine are typically quite short, often under 15 minutes, sometimes only a minute or two 

Renee,

   In my 30 years (give or take a year) exp.with this disorder...if i recall correct,i might of had 1 or 2 of them lasting in the 15-20 minute range,prior to finally getting an abortive that works (the vast majority) of my attacks would last in the 2-3 hour range...from what i just read,you might want to get a second opinion...wishing you nothing but PFDAN.....Lenny

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I am chronically episodic.... :-/ :-/ :D

My what a bunch of very good questions Renee.

the bb

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Renee and all.

One thing EVERY person with a diagnosis of CH should do is a trial of indomethacin.

Clusters are rare, CPH and ECH even rarer and there are a bunch of other strange headaches but interestingly  most of the other TAC`s are responsive to indo in the range of 150 mg per day (up to 300).

CH, episodic or chronic seldom respond to indo, but there are a few that find it helps.

Yes, indo is really hard on the stomach and GI tract, maybe that's why it is also available in suppository form. 

Every one should try it, just to rule out other conditions that are similar to CH

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No idea whether this adds anything, but I often think about Dr. Sewell's observation that people with chronic CH also have "cycles" within their chronicity.  I will post his whole blog post on the subject here, but to see the charts, you'd have to go to http://www.clusterattack.com/blog/do-chronic-patients-cycle/

>>>>Do chronic patients cycle?

Jürgens (2010) Ten years of chronic cluster–attacks still cluster

Commentary–Ten years of chronic cluster – attacks still cluster

Tim Ju[ch776]rgens is a post-doc working for Arne May at the Department of Systems Neuroscience, University Medical Centre Hamburg-Eppendorf, Hamburg, Germany—and by “post-doc”, I am using academic slang to mean someone who is in the first few years after receiving their MD, but before their first official faculty position. Despite his junior status, Dr. Ju[ch776]rgens has been remarkably prolific in the field of cluster headache research these past few years. Last week we looked at what he had to say about impairment in cluster headache; this week we will examine another paper he wrote recently about periodicity in chronic cluster headache.  ItÂ’s Ju[ch776]rgens-Fest 2010, woo-hoo!

We all know that cluster headache is a circadian-linked disorder, with attacks occurring at much the same time every day and—even more interestingly—much the same time every year. Some people find that their cluster periods occur twice a year, in spring and autumn, for example; I have one patient whose cluster periods occur for one month every seven months, precessing around the calendar and occurring at a different but predictable time each year.

What about chronic cluster headache, however? One tenth to one fifth of cluster headache patients donÂ’t have episodic attacks with clear cluster periods; they have attacks year-round. Do these vary rhythmically as well? I think—yes. For one thing, I observe it in my own chronic cluster headache patients. For another, I think that the distinction between chronic and episodic cluster headache is artificial. I believe that cluster headache is like epilepsy—just as anyone can be provoked into having a seizure under the right set of circumstances, so anyone can be provoked into having a cluster attack. Just as there is a “seizure threshold”, that can be raised or lowered with the appropriate environment, biochemistry, and drugs, so there is a “cluster attack threshold” that rises and falls, sometimes to the point where attacks will occur spontaneously. Some patients can tell when they are in a cluster period because of some indefinable subjective change, some “penumbra”, even if their prophylactic meds are working and they are not even experiencing any attacks! According to my view, chronic cluster headache patients are merely those unfortunate few whose cluster attack threshold never rises to the  oint that they cease to have spontaneous attacks. Others (Sjaastad) have argued that this may be true for secondary chronic cluster headache (the form where episodic has evolved over time into the chronic form), itÂ’s not true for primary chronic (which started that way to begin with), which doesnÂ’t show a circadian link. WhatÂ’s lacking is hard data either way!

So what should fall into Dr. Ju[ch776]rgens’ lap but a patient with cluster headache—starting at age 51, diagnosed at age 54, and converting to chronic at age 55—who had meticulously recorded every single cluster attack that he had for the next ten years in electronic form; 5447 in all. Only in Germany! I dream of having a patient like that. I always hand out headache diaries, but I can count on one hand the number of times I’ve ever received one back filled in. Dr. Ju[ch776]rgens then conducted a “spectral analysis”, which is a advanced mathematical technique for analyzing phenomena that occur in cycles by looking at them in terms of superimposed frequencies.

What he found was the following: His patient had an average of 45 attacks a month, lasting an average of 23 minutes each (treated). The frequency of attacks DID vary cyclically, with one peak occurring every 13 to 15 months, and smaller cycles occurring every 2, 4, 6, 7, and 9 months. There was also a daily cycle, which (oddly) corresponded better with 24.5 hours than 24. Attacks were slowly diminishing as the years went by.

Why is this important? As Dr. Ju[ch776]rgens point out, this one case confirms scientifically what has long been suspected—that chronic cluster headache patients cycle also (although it does not address Sjaastad’s theory that primary chronic patients do not). Practically speaking, this means that if a prophylactic medication stops working with a chronic cluster headache patient, it’s a mistake to conclude that it’s stopped working and switch to something else. It may just be that the disease is in an upswing and will get better in a few weeks, in which case it is better to stay on the medication and wait it out.<<<<

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Hard for me to see how Dr. Jurgens can make any conclusions based on data gathered from one patient but they're the experts so I must just not be seeing something. I think it could be very valuable - not just to the medical community but to each of us - to keep a headache journal, if for no other reason than being able to possibly predict up and down-swings so we could know optimum times to try to bust. I think we're going to start keeping one.

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Dr. Sewell is absolutely correct re the artificiality of the distinction. The cycle within the chronicity is usually hidden, but I believe the only difference between chronics and episodic people is that between periods, a chronic does not revert to 'normal' sensitivity levels; this has been shown by the difference in mast cell numbers in chronics... they do not go down as in episodics, so a chronic person is always prone to what he refers to as 'spontaneous' attacks (they aren't really spontaneous or random at all, but thats nitpicking).

Based on my own unscientific sampling of one, I have definitely seen that when I was able to remove my own chronicity, the underlying periodicity became very obvious; I certainly know when I'm in one and am able to act accordingly.

Thanks Jerry.

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the bb,

Thanks for the link. It says one month PF vs two weeks PF that I have read elsewhere.

Also, I now know why triptans and I do not get along. I am allergic to Sulfa. Surely am glad I refused them. Took two Imitrex once a long time ago. My body just said 'No'. I didn't feel 'right' after taking the stuff. Now, they would for sure produce a violent drug rash at the minimum.

Another 5-6 months and I will be chronic. >:(

But, then again, I might get out of this hell-hole sooner. 8-)

So, I will wait to post on this again in a few months, if necessary. Just wanted to say 'Thanks".

spiny

the sleep deprived

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Question for all u chronics out there-did many of u start as episodics then converge into chronic or was it chronic from the very start. 

Im a 20 year epis but cycle running longer than normal and beginning to wsitch sides within cycle--m concerned

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Hi All,

Started at age 50 with first signs of allergies.

Congestion morphed into these mind-blowing headaches over several years that seemed to be tied to the seasons and air quality (Spring/Fall).

Probably about 52 when first attack occurred (after airline flight) when no allergy symptoms were present.  Had to be a K10.

Became Chronic at age 53 with several per day, afternoon and very late evenings.

Spent 2 years suffering, testing and praying.  Mostly K6-8.

Diagnosed at 55 with Chronic CH.  Found ClusterBusters and O2  :)

No Migraines

Exercise has no effect

Always unilateral stabbing pain, now K4-5 only.

Most effective abortive .... DEFINITELY OXYGEN @15 lpm

Most effective preventative ..... Lithium 300 mg/Day

Interesting that 88% of my CH occur on days off and rarely on work days.  Only one occurrence in 3 years while I was actually at work.

Worst Triggers .... Daytime napping, Alcohol and sudden pressure changes

Have been Episodic for about a year now.  Winter is worst time with 4-6 per month.

Clusters never last more than 1/2 hour and usually 5-10 min with quick O2.

I almost got religious when going the first week without CH.  Changed my life.

Have kept a detailed diary for 3 years noting time of day, intensity, weather, air quality and potential triggers.  My Neuro wasn't the slightest bit interested in seeing my charts and diary's.

Enjoy the stats, PF days to everyone  ;)

weatherman

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I'm a bit of an anomaly :D, but...

I had a brief 3 to 4 week cycle around puberty, then an extended remission of almost 40 years. :)

At age 50, they came back and after sinus surgery and a MRI, I got to see a headache specialist, Dr. Ken Lazarus.   He promptly diagnosed me as primary chronic CH (i.e. chronic from day one). :(

After a few years of blindly taking this and taking that, with nothing really working, Ken started talking brain surgery, specifically trigeminal rhizotomy.  This was a wake-up call for me, and I started to research and advocate for myself. >:(

Within a year, I found Clusterbusters, and as they say...the rest is history.  I have been unable to completely shake CH, but went from refractory chronic to episodic sans brain surgery.  :)

I also have two brothers diagnosed ECH.  One has been in remission for more than 10 years, and I hope he stays that way. 

But I continue to fight the good fight and explore any and all options, not just busting.  But one thing is for sure -- I will never go back to the victim mentality that once characterized me.  I have my life back.  :) :) :)

~alley

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But one thing is for sure -- I will never go back to the victim mentality that once characterized me.I have my life back.Smiley Smiley Smiley

Amen!!! ;)

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I may have started chronic, not too sure. My first year with clusters was hell - is there a Hell category of headaches? I had a 7 month headache, nearly weekly migraines and frequent clusters. After that I went episodic for a couple years, and I am now definitely chronic.  Well, until busting that is. Ask me again in a few months.

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