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!

I meant to post more, but I'm apparently not entirely with it today..
I was diagnosed with CH at 11 years old, thankfully my Mother was able to recognize it from a mile away because my Grandfather was unfortunate enough to suffer from them as well, so I was diagnosed almost immediately.

I've tried a lot of medication (please bare with me as I can't remember the names of most of them) I was put on Predinisone as a kid, they tapered the dose over 10days, and it honestly made my CH so much worse. A few years after, I was given some kind of narcotics that the Dr told me to just take every morning even if I wasn't having a headache so I wouldn't get one, I failed that year of high school because I couldn't keep my eyes open, and it still did nothing for my CH. I was told I have a potassium deficiency so I take supplements, which actually seemed to help the first few weeks, but it does nothing now. I've been given maxalt, blood pressure medication (I have normal blood pressure), sumatriptan shots, verapimil, vimovo, and a few other pills I can't remember the names of, I think a few were triptan pills and one had caffeine in it.. I keep hearing wonderful things about the O2 therapy so as I mentioned, I finally asked for it. I have not yet tried it as my tank was delivered this morning, and it didn't come with a mask.

I've had issues with some Doctors not believing me at all, telling me I was having rebound headaches, or it was my neck, etc. The last appointment I had was Monday for my O2, it was by far the worst appointment I've had for these. I got a CH in her office and let her know it was happening before it was at max intensity, she said she didn't want to give my oxygen until I actually had one and at that point I couldn't speak anymore to tell her to help me. I don't know why I always get really quiet and I just completely shut down when it happens. She had me do blood work because my heart was pounding, which I was able to tell her was only because of the pain. The lady had to hold my arm down to take blood because I was shaking so bad, my face was swollen, I could barely walk, all that fun stuff, I had to run to the car with and sit there with my ac on full blast and my head in my hands for almost an hour. I feel kind of responsible because I couldn't speak up, but I feel like as a dr who's seeing a patient for CH, who says they're getting one, I shouldn't have needed to say anything? I'm probably just being a jerk about it. I still won't go back there.

Anyway, I'm basically here just to talk to other people who know what it's like, and to maybe see if there are any tips and tricks I don't know about besides super hot showers. CH is actually pretty lonely even though my family is very supportive and do their best for me. Also, if any of you may know where I can get instructions on how to use this O2 tank, I would be forever in your debt!!!

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         Potter

Thank you!!!!

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. 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.

4. 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.

5. 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.
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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!

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Thank you very much Bob for all the info! I've seen a few neurologists and had plenty of MRI's done over the years that all show nothing. However, you make a very valid point, I do need to start over with someone who has the knowledge, skills, and will to really try to help me, not just any Dr.
I will definitely be printing this and using it to my advantage here.

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.

Oh thank you so much Maz, I already found and purchased the mask on here thanks to Potter, but the nose canula trick is going to hopefully come in handy while I wait for the mask to get here!!!

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.

Hello Bea and welcome,

See below details of the Vitamin D3 treatment, known as the Anti-inflammatory Regimen, that Mike refers to. It has made a significant difference to over 80% of those of us using it.

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Read part 2  first as it gives details of how to use the regimen.

Then come back with as many questions as you have.

Best,

Peter.

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.

We are not allowed to have humidifiers here in England - they can cause infections apparently.  So, I have never used one despite many many hours on the 02.

02 will make your throat and chest feel dry, but a glass of water does the trick.

That's good to know Maz, thank you!

Bea,

I would agree with Maz. Been using high flow O2 for years without a humidifier, without any problems at all.

Peter.

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.

Bea,

If you're ever willing to try something outside the box, check out

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Other than that, O2 is my immediately line of defense to abort the CH.

Chad