Hi everyone, I'm Bea. I've been having clusters since I was a kid and I've tried way too many medications without reprieve. This cycle is up to 6 per day.. After 18 years of just toughing it out, I finally asked my Dr this week about Oxygen, you'd think I asked her for a tank of Brad Pitts breath with how difficult it was just to find someone to agree to fill the prescription for me..
Anyway, I have my O2 tank finally, but I have NO IDEA how to use it because these people are proving to be quite useless, and I apparently need a separate prescription for a mask so all I have currently is the nose tube.. I am so frustrated that this is turning out to be so much more complicated than it ever should be, considering they won't bat an eye about pumping me full of drugs that MIGHT work. I really really hope no one else has to go through this kind of trouble!

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         Potter

When I se years of attacks and multiple treatents which all fail--says that it's time to start all over from ground zero.

Your situation demands working with a headache specialist for two reasons: most docs have no education and little experience with complex headache disorders ( and includes neurologists). Secondly, there are multiple disorders which MIMIC Cluster but are not headache disorders, a number mimicing Clusster. So you need a doc with the experience to clarify this question.
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Cephalalgia. 2010 Apr;30(4):399-412. Epub 2010 Feb 15.

Cluster-like headache. A comprehensive reappraisal.
Mainardi F, Trucco M, Maggioni F, Palestini C, Dainese F, Zanchin G.

Headache Centre, Neurological Division, SS. Giovanni e Paolo Hospital, Venice, Italy. federico.mainardi@ulss12.ve.it

Abstract
Among the primary headaches, cluster headache (CH) presents very particular features allowing a relatively easy diagnosis based on criteria listed in Chapter 3 of the International Classification of Headache Disorders (ICHD-II). However, as in all primary headaches, possible underlying causal conditions must be excluded to rule out a secondary cluster-like headache (CLH). THE OBSERVATION OF SOME CASES WITH CLINICAL FEATURES MIMICKING PRIMARY CH, BUT OF SECONDARY ORIGIN, led us to perform an extended review of CLH reports in the literature. We identified 156 CLH cases published from 1975 to 2008. THE MORE FREQUENT PATHOLOGIES IN ASSOCIATION WITH CLH WERE THE VASCULAR ONES (38.5%, N = 57), FOLLOWED BY TUMOURS (25.7%, N = 38) AND INFLAMMATORY INFECTIOUS DISEASES (13.5%, N = 20). Eighty were excluded from further analysis, because of inadequate information. The remaining 76 were divided into two groups: those that satisfied the ICHD-II diagnostic criteria for CH, 'fulfilling' group (F), n = 38; and those with a symptomatology in disagreement with one or more ICHD-II criteria, 'not fulfilling' group (NF), n = 38. Among the aims of this study was the possible identification of clinical features leading to the suspicion of a symptomatic origin. In the differential diagnosis with CH, red flags resulted both for F and NF, older age at onset; for NF, abnormal neurological/general examination (73.6%), duration (34.2%), frequency (15.8%) and localization (10.5%) of the attacks.

WE STRESS THE FACT THAT, ON FIRST OBSERVATION, 50% OF CLH PRESENTED AS F CASES, PERFECTLY MIMICKING CH. THEREFORE, THE IMPORTANCE OF ACCURATE, CLINICAL EVALUATION AND OF NEUROIMAGING CANNOT BE OVERESTIMATED.

PMID: 19735480 [PubMed
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Look under: Medications,  Treatments,  Therapies -› Important Topics ->Cluster-LIKE headache
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LOCATING HEADACHE SPECIALIST

1. 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.

2.  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.

3. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ; On-line screen to find a physician.

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

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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.
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You'll receive suggestions on treating Clusters but they, while being effective, are no substiture to KNOWING what you actually have---especially with your lengthy history of failed efforts.
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Print the article, below, and just use it as a disucssion tool with any doc you see. Just help to keep you grounded.

Best wishes!

Hi Bea
You can buy a mask right here on the site, which is much better than the ones you will be supplied with on a prescription.  There is a yellow tab on the left of your screen "CH.com store".

In the meantime, don't bother with the nose canula. You will still be breathing normal air at the same time as your 02, so it won't work.  Put the canula in your mouth instead and pinch your nose.  That will ensure you are breathing 100% pure 02, which is what you need.

Hope this helps.
Maz.

Hi and welcome.

You've got some good advice so far but other things to try are energy drinks (caffeine / taurine) which you take when a CH starts and it can help decrease the intensity / duration of the CH. Also read up about how many of us use vitamin D3 as an effective preventive.

Keep reading and ask all the questions you can think of.

Thank you everyone for all the advice here!! I feel like I don't need to explain how difficult it is to get any.. My doctors best advice has been to get rid of stress.. 😒 (Thanks captain obvious!)
I do have another question about the O2, I'm very new to it so I have no idea. A few family members are nurses and have told me the humidifier is not necessary, because it may just become a nuisance for me at the high flow rate, so I haven't used it yet.. Should I?! I just feel like if I use this thing several times a day, without it for much longer, I may end up regretting it? I'm trying to do as much research as possible but staring at tiny words on a screen all day is not doing me any favors.

That's good to know Maz, thank you!

I have no inherent objection to Oxygen for it has a good record for success. But seems to me that its short effective life, issues of moving eqipment (outsie of your home), arranging for refills, etc. carries quite a burden ccompared to having a pill in you pocke which gets around all these issues. Add costs into the equation, too.

I've been hanging around here for a good many years and I have observed a recurring cycle. Someone reports success with a new abortive; there is quick interest in respose and folks starting reporting their experiences.

EVEN if, the new treatment is effective, without some comparisons tests showing relative success between the new and the older treatmentss. IF you original treatment isn't effective, then considering a change is a reasonable consideration.

But changing in the absence of some decent comparative data re. effectiveness if your current treatment is working for you.

Re. my comments about oxy vs my pill. Both work for me but there isn't any reason for me to change to O2 just becaue it work--give the significant benefits of my pill re. cost, ease of use, and effectveness.

Good judgment involves a number of factors.