Hi,
I have been episodic for 12-13 years, and usually get 1-2 episodes a year lasting 4-6 weeks. I've had clusters for over ten weeks now and o2 isn't touching them. Been using 2 imitrex injections every 24 hours.
What I wondered was a) is it possible that the current extreme weather in the uk has extended my clusters or b) is it likely I'm turning chronic?
I would appreciate any advice.
Thank you very much.

Don't sweat going chronic.....it will happen, or it won't. Worrying just adds to the CH aggravation! ;)

From personal experience, for over 20 years, I had 2 cycles a year, 2-3 months, fall and spring. Then in my 40's they went all over the board. 2 year remissions, 8 month cycles, no longer any kind of discernable pattern. As of yet, I still don't qualify as chronic, a full year of CH without a break, although there is talk of changing that definition!

There is anectodal evidence triptans extend cycles. No hard and fast evidence, but a growing feeling among members here from their personal experiences.

Do you have an effective prevent med you take? Verapamil, Lithium Topomax? Have you read the oxygen info tab on the left side of this screen? Many have found that when 02 failed them, a minor adjustment in HOW they used it dramatically affected it's ability to halt an attack.

Welcome to the board, hoping we can help you out a bit.

Joe

Thanks very much for your advice Joe. I am on no preventative medication, am waiting for a referral to a neurologist.
Thanks again, take care.

Please do as Joe suggests and read the O2 tab. We have found many who are using O2 at too low a level (7-10lpm or even less) or who are not taking full advantage of hyperventilation to abort the hit. Also, have you tried energy drinks? Like Red Bull, or anything that has a minimum of 1000mg taurine + caffeine? Many of us have found they aid in aborting a hit particularly if chugged rapidly at first onset. Let us know how you are getting on. Blessings. lance

I'll echo Joe's suggestion about reading up on the oxygen. With a high flow rate (15lpm or higher) and using a non-rebreather mask I'm killing off my CHs in 5-8 minutes.

I'd not worry about if you're chronic or not, after all it's just a label. Those who are chronic often post on here saying that they'd prefer to be chronic over episodic as they find that easier to deal with, just as those who are episodic say the same. I think it's all down to people getting a good understanding of their own CHs and not wanting things to change around on them (although CHs seem to morph over time).

As to the weather, it's possible that being mid-winter and with the extreme cold you're not likely to be outside too much, you may be a bit low on vitamin D. Someone who posts here (Batch) has been posting how by taking vitamin D supplements (plus fish oil) he is decreasing the number of CHs he is getting. Others have posted how low pressure systems can appear to impact their CHs, although people living near sea level (like me) and others at higher altitude (e.g. Colarado) still get CHs.

Thank you lance and mike. Yes I drink red bull and o2 is 15l. O2 was aborting clusters for the first month but then seemed to just stop working.
Thank you all for your advice.

Thank you for the advice Marc. Unfortunately my o2 provider (BOC uk) will only provide 15lpm.

There is nothing stopping you sourcing your own regulator that does more than 15lpm.

I've got two regulators, one a 15lpm one provided by the hospital and one 25lpm I purchased. With the 25lpm I abort in half time it takes with the 15lpm one.

If you have the option, seek a headache specialist--not a general neurologist  (unless he can offer evidence of having knowledge/experience treating headache). Far too many docs lack useful training & experience to help us.
====
LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

6. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
====
Do some basic learning about CH so that you can use the information to discuss treatment options with the doc you ultimately consult.
---
PDF file, below

===



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]
=====

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] 

---