Hey all!  I am in the first cluster cycle I've had that's (so far) lasting about 3 months longer than all previous cycles.   Is there anything I should be looking for/recording that will help my neuro?  Or me?  Is there anything I should be doing now (am on O2, Imitrex injections, verapamil ER 180 mg/day) to help?

For sure, I will be discussing verap increase with my GP--I'm well aware I'm on a low dose and ER may not be best--but anything else?

Don't sweat going chronic, you either will or won't. I know that sounds simplistic, but it's one aspect of your condition you simply have no control over.

I've had cycles go as long as 8 months, and after 33 years I'm still episodic. Crossing fingers for ya!

Joe

J Headache Pain. 2005 Feb;6(1):3-9. Epub 2005 Jan 25.

Chronic cluster headache: a review.

Favier I, Haan J, Ferrari MD.


Department of Neurology, K5-Q Leiden University Medical Centre, 9600, 2300 RC Leiden, The Netherlands.

Cluster headache (CH) is a rare but severe headache disorder characterised by repeated unilateral head pain attacks accompanied by ipsilateral autonomic features. In episodic CH, there are periods of headache attacks with pain-free intervals of weeks, months or years in between. A minority of patients have the chronic form, without pain-free intervals between the headache attacks. Chronic CH can occur as primary or secondary chronic CH; the rarest form is episodic CH arising from chronic CH. In this article, we give a review of the chronic forms of CH and focus on demographics, clinical manifestations, social habits, predictive factors, head injury, genetics, neuroimaging and therapy. IT IS REMARKABLE THAT LITTLE IS KNOWN ABOUT RISK FACTORS THAT MAKE CH CHRONIC.

Publication Types:
Review

PMID: 16362185 [PubMed] 
=============================

Given the state of knowledge, the worst response is to try and predict the future and spending your time "looking" for some signs of a transformation. Psychologists refer to "anticipatory anxiety"--the result of trying to predict an outcome.

A more positive way to use your emotional energy:

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It seems to me you are asking if there is a different treatment for chronics vs. episodics, and the answer to a degree, is yes. For example, long term preventatives tend to be used more aggressively...why go on a high dose of a preventative if your cycle is only a few weeks long? Yes, your verapamil is low. It's possible you're due for both an increase to more effective levels, and possibly a pred taper to help with the transition. The other difference is how much of, and how often, our abortives are used. In my opinion and experience, we need a broader range of abortives at our fingertips, with some freedom to choose. I have a complete O2, Monster, imitrex and migranal panoply from which to choose. Having added lithium recently to the mix, I am down to 1-2 hits a day, and sleeping throughout the night. I'm hoping it stays that way or improves. Blessings. lance

You may have a good Doctor but on average they know very little about CH. CH is such a rare condition and Doctors only have about 5 hrs of instruction on all types of headaches, learning from this website is your best bet for proper treatment.

What is your oxygen setup? Do you know about the best setup? Most often we have to get the proper best equipment on our own. High flow regulator, best mask, etc. It most definitely matters. I went from aborting 60% to 97% with O2 only from this site.

Don

My Dr is one of the best when it comes to CH he was saying that ER verapamil is useless. See if you can get on non ER and on a higher dosage. Also, I like DHE better than imitrex but thats preference. I also take melatonin every night and Depakote.

Brooke wrote on May 4^th, 2012 at 6:57pm:

My Dr is one of the best when it comes to CH he was saying that ER verapamil is useless.

This has come up multiple times. For some, the extended release form is useless but for others, including myself, it works much better.

A dose of 180mg is very low, with most people needing 360-480mg a day and some around 1000mg.

Mike makes an excellent point, the variables from patient to patient are so great one must be VERY cautious when making generalizations about what does and doesn't work.

Joe

Lance, bingo--I am indeed asking if there's anything I might do differently if I were chronic vs. episodic.  I do not fear going chronic, although I'd prefer not!  I am a practical sort in that regard.  I have a standing agreement with my doc that he will tell me about serious side effects only, as I don't want to be influenced by possible side effects and the power of suggestion.

Thanks for the article of pain vs. suffering, Bob.  I read that early in my CH "career" and it's most useful in describing to my friends that, terrible as CH is while it's happening, it does not rule my life.  I truly believe in "living between the hits" so to speak!  It's just that, practically speaking, I need to know if I should be preparing for chronic-ness so I can keep working and maintaining that sweet health insurance!