It's great to finally find a place to connect with fellow clusterheads.

My first cycle began in 2005, although thinking back further I can identify at least one or two in the years before that first cycle began that would randomly hit. I chalked it up to just a bad migraine, but never thought twice about it until June 2005 when they starting coming regularly.

From 2005-2009, my cycle was June-October. One attack per day, between 3am-5am. No longer than 20 minutes...the typical symptoms that others have indicated here. I finally went to a Neuro, and have found great relief with Verapamil and Imitrex nasal. I would get shadows in late May, which usually prompted me to go back on the pills to ride out the normal cycle.

I enjoyed one blissful remission from October 2009-February 2011. And then something happened...

My cycle completely changed.

the CH's started about three weeks ago, and none have awoken me from sleep like they used to. The are either 7am or 7pm, and some have lasted up to 3 hours instead of the usual 20 minutes. Intensity now varies during these attacks, where in the past I could count on a K5 or K6 being the worst. Now, it's unpredictable.

I am also feeling shadows now more than ever. That hard-to-explain presence hovering over my temple and the occasional "searing twinge" that is reminding me that the beast is in town early and wants attention.

I am wondering if anyone else has experienced a switch in cycle, or change in patterns over the years? Since I am relatively new to the CH community, I am looking for some of the seasoned veterans to weigh in on this.

Regardless, I am really glad to have some place to go, so thank you.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Memorize this.

        Potter

Sadly your experience is the norm rather then an exception, the beasts ability to morph at will is well documented. When mine started in my late teens, if I felt an attack coming on, and could get to sleep, it would abort the attack. They were very random then with no set pattern. Thru my mid 20's up to about 40, they were setting the nations atomic clock by my cycles, spring and fall, 3 month cycles, 2 hits a day. But in those days I never had a wake up hit. Didn't discover the joys of those until my 40's. So yeah, the sucker can morph like no ones business!

Do read the link Potter gave you on 02. Oxygen has almost eliminated my use of imitrex. I feel that familiar hot twinge in my ear, the neck starts to tighten, I know the beast is attacking. I fire off the 02 and 6-8 minutes later I'm pain free. Has really changed how I view beasty.

Glad you found us. Pull up a seat and start reading, in no time at all you'll know more about Ch then most doctors! Welcome home.

Joe

Goodness!, I don't like to have associates who have such bad taste in disorders....
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Please tell us where you live. Follow the next line to a message which will guide you.

Cluster Headache Help and Support › Getting to Know Ya › Newbies, Help us...help you

You can add your location by editing your profile. CP Member --> profile
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Read the messages here rather extensively and you will see yourself--and clues to help. Especially, when you see a message with a paperclip symbol, look. This usually signals a technical document.
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The O2 pages (left) are worth exploring and see the PDF file, below, for current therapies.

This document (following) is the most extensive evaluation on current therapies I've found in some time.
   This is the single best listing of current therapies, with evaluations of effectiveness, which I've seen.

If you want a single document to drop on your doc in support of a particular therapy and/or to educate him---this may be it. (If you use it for this purpose, include all the reference pages at the end. They provide the evidence which a good doc would appreciate.)

When you hit this link it will require you to register for the site to gain access. The article is 15-pages long.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
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Hope you are working with a headache specialist. You might discuss an increase in your Verap.; may help with the shadows. The following protocol has become widely accepted.

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Headache. 2004 Nov;44(10):1013-8.   

Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.


    Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).

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SLOW-RELEASE VERAPAMIL

Dr. Sheftell applauded the protocol for verapamil used by Dr. Goadsby and colleagues, which entailed use of short-acting verapamil in increments of 80 mg. “This method was suggested by Lee Kudrow, MD, 20 years ago as an alternative to slow-release verapamil,” Dr. Sheftell noted.

“I would agree with using short-acting verapamil, rather than the sustained-release formulation, in cluster headache,” he said. “I prefer the short-acting formulation with regard to ability to titrate more accurately and safely. My clinical experience anecdotally demonstrates improved responses when patients are switched from sustained-release verapamil to short-acting verapamil.”

Dr. Goadsby agreed that his clinical experience was similar. “There are no well-controlled, placebo-controlled, dose-ranging studies to direct treatment. This is one of those areas where clinicians who treat cluster headache have to combine what modicum of evidence is available with their own clinical experience,” Dr. Sheftell commented.

Hey Jason!

Agreed with 'ol Guissepi/Joe that beastmorphing is the unfortunate norm.

And the 3 hour long attacks phenomenon with higher intensity is something I too started to experience after a decade or so.

Also agreed about the O2! Yes please mill about here, and based on info and advice gained, beef up your beast killing arsenal with additional items since (I hate to say this) the beast is not only known for morphing when and how long he'll hit, but what meds or treatments he'll respond to.

Bob Johson said: 
Quote:

Please tell us where you live

This is for all newcomers, not just you.  For Bob and I and a lot of others who only want to help, putting where you live in your PROFILE, is a big help to us.

Many times I know of a good place to go to get 02 but have to go back and forth in PM's and e-mails just to find out what city and state a person lives in.   Same with Bob when HE tries to help.

Please, newcomers.  We don't need addreses or personal info. just put city and state on your profile pic..NOT somewhere deep inside  a post where it will be over-looked. 

Up above,  DJ gave me permission to put a link.  Please read....Newcomers: help us help you.

Linda

Hi Jason
Welcome aboard, sad you have to be here but you wont find a better place for advice.

As the others have said please let us know what country & area you live in, I'm an Aussie along with a few others & we know our back yard better than any one & thats where we can help.

Cheers
Barry