Hi Guys,
I have suffered from periodic migraines for as long as I can remember  -  I'm nearly 70 now and about 10 years ago I was diagnosed with CH. For the first few years it was Episodic, hitting me hardest in Spring and Autumn. For the last few years it has been Chronic. All this time I have also had the usual spasmodic migraine attacks.
My medication consists of 240mg Verapamil in the morning and 120 mg at night as preventative and Almotriptan tabs and Oxygen as abortives and I have been on this regime for several years. This has just about made life bearable.
Now things are changing and I don't understand what or why, or where it's going. Any thoughts that you guys can contribute would be greatly appreciated.
The frequency of CH has dropped from around 5 per week to about 1 every two or three weeks, whilst migraine/bog standard headaches (which respond to paracetamol and codeine) have increased. I have recenly gone 6 days without any sort of headache at all and over 2 weeks without a CH. I get the feeling that CH has run it's course and is on it's way out for a while, hopefully longer. This however may just be wistful thinking on my part ::).
Question: -  does this pattern ring any bells with other CH sufferers or prompt anyone to offer any comments or advice?
Thanks for any response.
JoeKen.

Well, Lord God, contratulations!

I'm 74 and have been free of attacks for about 3-yrs after a 40-year history of CH.

I can only assume that you are aging out. The medical literature is very scant on the topic, but a couple of medical types have speculated that Ch tends to dimish after 60-ish.

If you have kept up with medical advances in treatment, we can supply some current literature. I'll put one good article as an over view piece. And could suggest that you look at the excellent cluster support group in GB.
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Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]

Bob knows how much you 70 plus people are pissing me off! ;D I just turned 50 and keep hoping I'll grow out of them SOON! The current cycle I can't kick tells me otherwise.

I must admit as I've aged they've mellowed a bit. Not totally sure if that's just aging or an effective treatment plan but I honestly can't recall my last KIP 10. Here's hoping you're done for good!

Joe

happy for you :)
but have you thought any other change on lifestyle
that might have helped even if it seems unoticeable?

i mean something must turn episodic to chronic
and vise versa even if it is rarer on other ages too.
Cause these studies mean that
1.i ve got to reach at least 60's
2.i ve got to buy 30 cakes! :o

Hi Y'all,
Thanks for you responses. At last someone (Bob) has made me aware of a single benefit of getting old  ;D . There can't be many but if a diminishing propensity to CH is one of them, bring it on!!  ;) .
Belated congratulations Bob on your 3 year feedom from CH  -  I imagine now that you are beginning to relax a little that the beast has left you permanently  -  let's hope so. I guess it will have made a big change to your life, and all for the better  :)  .
I do occassionally look in at OUCH (UK) but I find that CH.com is more active, more user friendly and more informative but some of that may just be down to the fact that I am more familiar with CH.com .
Thanks again and PFDAN,
Dave.

Hi Guys,
Just thought that I'd update anyone interested in what's happening at the moment. I still seem to be coming down from being a chronic CHer, possibly from being any sort of CHer :) .
My headaches continue to be non CH, being all across the forehead just above the eyebrow level. I honestly can't remember the last proper (down one side of the face) CH, must be around a month ago I think  ;D . That is not to say that I haven't felt the need to take almotriptan for a month. Some of these 'ordinary' headaches were really nasty and persistant and only a twin track attack by triptan and oxygen made any impression on them. For the last 3 or 4 days the usual daily headache showed signs of developing early/mid afternoon but never really developed and disappeared without any action on my part within an hour or so.
I'm not running any flags up any flagpoles just yet but I'm beginning to think that Bob Johnson may have put his finger on it  -  growing old may have it's benefit(s)  ;) .
T'would be nice if it is permanently on it's way out as we go abroad on a couple of weeks holiday at the weekend (Icelandic dust and Greek air travel workers permitting, of course  ::) .)
Keep your fingers crossed for me.

I don't want to be the one to be a downer for anyone but...a friend of mine who has been pf for 10 years asked Dr. Peter Goadsby at a convention if this means that he will never again have CH and are they gone forever?   Goadsby said no. 

Peter Goadsby for those of you who do not know, is our CH God around here and one of the foremost authorities on this condition in the world.  He is also one of our best champions.

Hi Linda,
I am aware of Dr Goadsby, he is based on our side of the pond. My optimism is not based on how long a period I'm currently enjoying without a 'proper' CH but rather on Bob Johnson's post above that there is some evidence to indicate that there may be a natural decline in susceptibility to CH with people over 70 years old, a milestone I reach in 14 days time, God willing.

He's actually in San Francisco now.

I think there is a possibility that the sparsity of cluster attacks and the resulting decrease in triptan use may be causing rebound headaches. Are these headaches a little different than your usual migraines?

Having a mixed headache diagnosis can be REALLY tricky in trying to get rid of all of them at one time.

Just as your use of triptans earlier when you were episodic may have some impact on your becoming chronic, they can complicate things.
I'm not saying that is what happened or is happening but it may be something to discuss with your doctor.

There is clinical evidence that triptan use can increase cluster activity.

Stopping or slowing excessive use of triptans, which many cluster sufferers end up doing at one time or another, can be similar to stopping excessive coffee drinking, IMHO
Everyone is different and I'm sure there are people here that stop cold turkey after taking 4 shots a day for 4 months, without a problem.
Many people though will taper down as their cycle fades away.

The type of headache you briefly described as this latest version of migraine doesn't sound like a typical migraine at all.

JM2C
Bobw

Brew wrote on May 10^th, 2010 at 7:34pm:

He's actually in San Francisco now.

Hi Brew,
Is he indeed?  I wasn't aware of that, so thanks  :). The 'brain drain' in action I guess. Can't blame the guy for following the bucks, if that is what he's done but, on the other hand, he'll probably achieve more, to the benefit of all of us, with the improved support and facilities on your side of the pond.

Hi Pinkfloyd,
Thanks for your input. I don't think my headaches are rebounds from overuse of triptans as my particular 'brand' of CH (officially diagnosed by Consultant Neuro) is not of the 'classical' variety. The HA come on slowly, once per day, usually in the afternoon, usually peak at around Kip 7 or 8, and last (untreated), anything from a few hours to 36 hours. In all other aspects they follow the accepted sympton patterrn. Because of this, at worst I only ever need to take a maximum of 2 triptan tablets per day and invariably any day that I need to take triptan is followed by a HA free day. My normal course of action is high flow rate oxygen and if this doesn't work, repeat with triptan which always works.
On the other hand, yes, these HA are different from my usual migraines in that they are less severe, and are located across the whole forehead just above eyebrow level whereas my migraines were always centred just above and behind my eyes and much more focussed.
All interesting stuff  :).
Another point that may interest some: when my HA pattern began to change earlier this year I quickly formed the conclusion that the situation was changing for the better. When I discussed this with my wife she said that from her perspective she couldn't see any evidence of it. This difference of opinion continues to some extent even now. I put this down to the fact that my wife just sees me suffering with another HA whereas I know the HAs are less of a problem to tolerate.
Just another pebble into the pool of experiences of CH ;D