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?

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] 
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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:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

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

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


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.

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!