Hey there,

So I'm new to the site. I just got diagnosed with cluster headaches on aug 28th of this year. I use portable oxygen and maxalt.
I'm also writing a research paper for my writing class (I'm a freshman in college) on a community I am a part of and I chose to do cluster headaches because I am finding out that not a lot of people know about this horrific disease and how it can affect a person.
My teacher is letting me use blogs as a source and said I could interview someone on here and potentially use it in my paper. I may not use it at all, but I do have to have at least 1 interview with someone from my community. Please note that your screen name WILL be omitted and only "jane doe" or "John Doe" will be used to reference you.

My questions are:

1. When were you first diagnosed?
2. How often do you experience the cluster headaches during a flare?
3. How do you describe the pain? Please use as much detail as you can!
4. What makes them better/worse? (For example, I noticed that artificial sweeteners will cause a headache within minutes to an hour after consuming it)
5. Does your insurance company cover the cost of your treatments?
6. If so, how expensive are they?
7. Do you use oxygen as an abortive treatment for the onset of the headaches?
8. If so is it always effective?

Thank you so much in advance for any help you can offer!!

G'day Oxy. Cant help much with the other questions except "3. Describe the pain".

I suggest you go to Youtube and google Cluster Headache. Some of our fellow sufferers have had the courage to put up videos of an attack but I believe it can be a bit confronting.

Personally, I've never been able to watch one. Far too scary.

I've also dug this up from the archives of ch.com but think only another CHead would understand it -

Stalked

Staring at an empty page
Pen in hand, mind all black
The beast is prowling, hear it growling,
Circling ready for next attack.
Too scared to sleep, too weak to weep,
Cowering in fear of what’s ahead,
I know it can’t kill me, but still it can fill me
With terror unquenchable, bottomless dread.

No second chances, the monster advances,
The stalking is over, it’s time for the fight.
No ducking or weaving, just bucking and heaving,
The claws have sunk in and now comes the bite.
The lashing, the crashing, the gnashing of teeth
As my skull slowly crumples, bone torn apart.
Talons of fire take my eye entire,
It’s merciless, endless, cut blind to the heart.

How long has it been, a minute? A year?
Where am I? Is it over, or just a reprieve?
I know that it’s out there just watching, and waiting,
And gloating, and hoping I really believe
That it’s gone forever, in future to never
Come back to attack, where-ever and when.
I’m beaten, defeated, the beast has feasted
Again, and again, and again and again.

Oxyrockin wrote on Oct 29^th, 2014 at 2:07am:

My questions are: 1. When were you first diagnosed? 2. How often do you experience the cluster headaches during a flare? 3. How do you describe the pain? Please use as much detail as you can! 4. What makes them better/worse? (For example, I noticed that artificial sweeteners will cause a headache within minutes to an hour after consuming it) 5. Does your insurance company cover the cost of your treatments? 6. If so, how expensive are they? 7. Do you use oxygen as an abortive treatment for the onset of the headaches? 8. If so is it always effective? Thank you so much in advance for any help you can offer!!

Here's where you're going to run into trouble with this bunch. We're all different and treatments are all different and we all react differently. The archives are a great source for reading up on this...

The google site that Aussie suggested is really an eye opener.. But it's hard to watch. And if you've ever seen another Clusterhead go thur one of these... well that's hard to watch also - it's like looking in the mirror.

Most of us were diagnosed after going thru a lot of other diagnoses. For me it was harmones, eyes, and a few other things... then we hit on what it actually was.

I'm not sure what a "flare" is.. if you mean an episode.. that varies with the person. For some it's a couple a day (or night) for others it's 10-12 a day. Then there are the chronics.. we're the ones who don't go 30 days without one.

In describing the pain... I had a child without benefit of any drugs.. I'll take that any day over one CH.. I've stood on my porch and screamed at God to Kill me at times..

We all have different "triggers". Personally the only thing I've ever found to "trigger" mine is the barometer. Foods, smells and nothing else seems to bother me. At one time beer did, but even that doesn't bother me these days. Just the barometer is constant. Let it go up.. and Boom!

Insurance is something we've argued about for years. they want to argue about our treatments (Imitrex and O2 especially). CH is expensive and a lot of us have spent a fortune on meds and treatments for some relief.

About 75% of this board swears by O2, but only if used RIGHT and with the right mask. A lot of doctors (most of them) don't really "get it" and neither do the O2 suppliers. I use a Demand Valve on my tank (which delivers O2 up to 60 liters a minute) and get relief in minutes IF I get to it at the onset.

And NO, nothing is ALWAYS effective.

A lot of us have gone on the D3 regimen (see Batch's post for that) and have had great results. I've been pain free for over a year now (after being chronic since 97).

My best advice to you is to read read read here and you'll probably find more confusion than you ever wanted to know. But we're ALL different .. that's the only Positive thing here. We suffer the same malady, but we react differently to different things.. (I couldn't take Maxalt any way - it makes me sicker than a dog). We all have different ways of coping with this and we come here because our families and friends and co-workers DO NOT understand what we go thru.

good luck with your paper.  :-*

Thanks so much for responding to my post! I actually just had another bout of cluster headaches yesterday and I was crying in my lecture. My fists were shut tight and my nails were digging into my palms to keep myself from screaming.  :'( It was horrible! I was just into the first few minutes of mine, but I could already begin to feel the piercing pain begin in my left eye. Luckily I only had fifteen more minutes of my lecture, but unfortunately my headaches get nasty rather quickly. I had to beg my professor to let me take my bio exam (which I was supposed to take AFTER class) later because I had to book it a mile across campus to get to my tank. I have never ran so quickly in my life.  :o
Hopefully we do not have a repeat today, but I'm dragging my tank around campus with me just in case. Screw what other people think, when I'm experiencing a headache I could give two shits less about what other people think. And if five minutes of me using my oxygen tank can prevent me from missing an important lecture then so be it. I refuse to let this control my life. I am already dealing with a HOST of other issues (SLE, sjogrens, fibromyalgia, scleritis, hypertension, tachycardia, etc..) I refuse to let this define my life too.
[smiley=bigtiny.gif]

"Screw what other people think,when I'm experiencing a headache I could give 2 shits less about what other people think."
I think that goes along way to answering question #3.
My neuro tells me one of his CH patients tried to jump to his death from a fifth floor hospital room window once.
That should explain a lot .

Oxyrockin wrote on Oct 29^th, 2014 at 2:07am:

My questions are: 1. When were you first diagnosed? 1. 1992, at the age of 13. 2. How often do you experience the cluster headaches during a flare? 2. By 'flare' I'll presume that you mean a cycle. I get my cycle every 8 - 12 months, and when my rare "double-cycle" starts I get it first on the left side, 4 times / day, and it lasts for 2 months approximately, then I get a CH 'break' for 5-7 days, then the cycle resumes on the right side for approximately 45-60 days. Then remission takes place. 3. How do you describe the pain? Please use as much detail as you can! 3. I hate this part. Sorry. To cut a very long story short it's the worst imaginable thing EVER. The pain-per se is the most significant symptom, but let's not forget the accompanying symptoms such as the constant unstoppable vomiting, extreme fatigue, and shortage of breath. Followed by total exhaustion afterwards "Here in this scenario I'm describing a bout with no abortive meds taken." 4. What makes them better/worse? (For example, I noticed that artificial sweeteners will cause a headache within minutes to an hour after consuming it) 4. Alcohol is a NO. Cannabis or any other form of dope is a NO. Smoking is not good for CH at all as well. Common flu/cold also work as triggers. What makes it better? Hmmm let me think... Verapamil!!! Even though it stopped working for me very recently, or in better words became much less effective, but it worked as my savior for years. Sumatriptan subcutaneous injections are a great abortive method. Followed by 100% pure oxygen in a non re-breathable mask, of flow equal to 15. Stopped working for me long years ago though. 5. Does your insurance company cover the cost of your treatments? 5. No. 6. If so, how expensive are they? 6. Thankfully affordable, but again I live in Egypt, and fortunately medicines here are way cheaper. 7. Do you use oxygen as an abortive treatment for the onset of the headaches? 7. O2 MUST be used at the onset, otherwise its effect is very limited. 8. If so is it always effective? 8. As I said, lost effect on my own demon long years ago, but yes they used to be very, very helpful in the past. I had my own oxygen tanks at home in order to handle the process right, because hospitals will rarely have the right equipment, and usually think you're insane for requiring the flow needed to abort a  bout.

A  comment on your present treatment: Oxygen is hardly convenient when your in class, etc. I assume that's why the maxalt but, for Cluster, sumatriptan is the preferred abortive because of its fast, potent effect.

It's critical that you take an abortive at the earliest sign of an developing. Delay to see if it's the real thing will gretly reduce the effectiveness or not be effecive at all.

You should, now, be using a preventive (Verapamil being first choice). The maxalt, is an abortive to kill attacks which get by the preventive med but PREVENTING attacks is the first line of defense.

Print the PDF file, below and use to discuss options with the doc.
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You'll be living with Cluster for a long time and it wold be best to work, if at all possible, with a headache specialist. Most docs, even neurologists, receive meager training re. complex headache disorders.
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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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WHY A HEADACHE SPECIALIST IS RECOMMENDED


Headache. 2012 Jan;52(1):99-113.
Cluster headache in the United States of America: demographics, clinical characteristics, triggers, suicidality, and personal burden.
Rozen TD, Fishman RS.

THERE REMAINS A SIGNIFICANT DIAGNOSTIC DELAY FOR CLUSTER HEADACHE PATIENTS ON AVERAGE 5+ YEARS WITH ONLY 21% RECEIVING A CORRECT DIAGNOSIS AT TIME OF INITIAL PRESENTATION.
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Read/learn! We need both the medicine and emotional strength that comes with knowledge.


These sites which are worth your attention: medical literature, films, plus the expected information
about CH.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Search under "cluster headache"
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
  Full of articles, blogs, book: written by one of the best headache docs in the Chicago area.
  Worth exploring. The latest book is in e-book edition, $10; comprehensive and worth buying for
  a careful read.
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Finally, if you plan to stick around:

It will help us to direct you to good sources of assistance if you will tell us where you live (city & state, if U.S. or country). At the Home page: Help button-->Edit & Profile --> Location. (This will add your location, just below your name, every time you post a message.

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Your questions:
1. age 35
2. Never had regular cycles; they hit randomly.
3. Classic descriptions you read in any source: intense, focal pain, sometimes radiating into the lower jaw (mimicing dental problems), in the eyes, sometimes the temple.
4. Never found foods, etc. but always using alcohol and exposure to solvents during an active period of attacks.
5. yes.
6. So many years ago that cost figures not worth digging up. (I'm 78 and have aged out of attacks for 10-yrs.)
7. Tried few times but inconsistent benefit.
8. No.

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1. When were you first diagnosed?
I found this site and looking at the survey results, I realized I was in the middle of the bell curve. This was 25 years after my first CH. So instead of being at the mercy of doctors, I started saying "I want to discuss my cluster headaches." So, after 25 years of no diagnosis I self-diagnosed.
2. How often do you experience the cluster headaches during a flare? Originally it was every other night. It's been as bad as 4-5 a night.
3. How do you describe the pain? Please use as much detail as you can! Boring, 8-10 on 0-10 pain scale. Mine is most intense in the occiput.
4. What makes them better/worse? (For example, I noticed that artificial sweeteners will cause a headache within minutes to an hour after consuming it) Cold, exercise, drugs.
5. Does your insurance company cover the cost of your treatments? Yes.
6. If so, how expensive are they?
7. Do you use oxygen as an abortive treatment for the onset of the headaches? Yes.
8. If so is it always effective?  Yes. However, at one point I started having rebound headaches. So I'd have one at 11:30 pm, knock it out with O2, have another at 1 am, O2 abort, 2:30 am, O2, and then around 4 am there'd be another but it did not respond so well to the O2, and at 5:30 am I'd end up taking nasal imitrex. But this was 28 years after my first CH.  Must also comment that they change pattern. So as soon as you think you've gotten a handle on things,  the pattern changes, or the drug you'd been using that worked stopped working.