I’ll apologize ahead of time, because this may be a duplicate topic, but I can’t find this information anywhere.  I am 33 and suffer from CH’s usually once a year for the past 10 years.  Last year’s started on September 1st, and I can feel it coming on – damn autumn.  I take zomig (seemed to work better than imitrex) to abort the twice a day bout, at 2:00am and 11:00am.  I discovered if I take a zomig before I go to bed it will prevent the overnight one from hitting, and allows me to sleep through the night (I just discovered this idea one last year-works great).

My question is, you all are talking about O2, these preventative prescriptions, and different ways to deal with their own battle.  Is there a common formula that you all use to deal with this.  I see that my situation is not as severe as most on here, and for that my heart goes out to all – because the pain i feel is likely the same, but I don’t get them as often.  This last event stuck around for 65 days, my longest ever, and if I can cut that down your knowledge would be helpful. 

My ultimate question is:
"If you met someone that was about to get their first CH, what would you tell them to do"

On another note, no one seems to really know why we are “lucky” ones to experience this.  It appears we all live in different parts of the continent, are different ages, etc.  Is there a common thread that we all share?

Thanks, and thank you for having a website like this.
Take care all,
Brad

bradincanada wrote on Aug 25^th, 2010 at 11:07am:

I’ll apologize ahead of time, because this may be a duplicate topic, but I can’t find this information anywhere.  I am 33 and suffer from CH’s usually once a year for the past 10 years.  Last year’s started on September 1st, and I can feel it coming on – damn autumn.  I take zomig (seemed to work better than imitrex) to abort the twice a day bout, at 2:00am and 11:00am.  I discovered if I take a zomig before I go to bed it will prevent the overnight one from hitting, and allows me to sleep through the night (I just discovered this idea one last year-works great). My question is, you all are talking about O2, these preventative prescriptions, and different ways to deal with their own battle.  Is there a common formula that you all use to deal with this.  I see that my situation is not as severe as most on here, and for that my heart goes out to all – because the pain i feel is likely the same, but I don’t get them as often.  This last event stuck around for 65 days, my longest ever, and if I can cut that down your knowledge would be helpful.  My ultimate question is: "If you met someone that was about to get their first CH, what would you tell them to do" On another note, no one seems to really know why we are “lucky” ones to experience this.  It appears we all live in different parts of the continent, are different ages, etc.  Is there a common thread that we all share? Thanks, and thank you for having a website like this. Take care all, Brad

Oxygen is first and foremost in our arsenal.  Our common denominator is a wonky(thanks Lelimey for that description.) hypothalamus.

           Potter

Silly question, When you say oxygen, what do mean by that?  Do you all have big oxygen tanks in your house?  Or do those little handheld canisters work? 

Clicky clicky, then start reading:

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The cause of Cluster has not been determined although there is deepening understanding of the processes involved. Our membership reflects that this is a worldwide condition and there are several other support groups in G.B. and Europe.

It's common to use a medicine which reduces the intensity/frequency of attacks during your active period. (Used continuously at the same time that you use an abortive to stop an attack, then stopping both types of med when your active period has ended.)

See the PDF file, below and print out the entire article which follows.
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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]
========
Headache. 2006 Sep;46(:1246-54. 
 
Cluster headache: clinical presentation, lifestyle features, and medical treatment.

Schurks M, Kurth T, de Jesus J, Jonjic M, Rosskopf D, Diener HC.

Background.-Cluster headache (CH) is a rare but severe headache form with a distinct clinical presentation. Misdiagnoses and mismanagement among these patients are high. Objective.-To characterize clinical features and medical treatment in patients with CH. Methods.-We established a cohort of 246 clinic-based and non-clinic-based CH patients. The diagnosis of CH was verified according to International Headache Society (IHS) criteria. We used standardized questionnaires to assess associated factors as well as success or failure of treatments. Results.-The majority (75.6%) was not treated before at our clinic-77.6% were males; 74.8% had episodic CH, 16.7% had chronic CH, in the remaining patients, the periodicity was undetermined because they were newly diagnosed. Cranial autonomic features were present in 98.8%, nausea and vomiting in 27.8%, and photophobia or phonophobia in 61.2% of CH patients. Most (67.9%) reported restlessness during attacks and 23% a typical migrainous aura preceding the attacks. The rate of current smoking was high (65.9%). Half of the patients reported that alcohol (red wine in 70%) triggered CH attacks. Eighty-seven percent reported the use of drugs of first choice (triptans 77.6%, oxygen 71.1%) with sumatriptan subcutaneous injection being the most effective drug for acute therapy (81.2%). The most frequently used preventive medications were verapamil (70.3%) and glucocorticoids (57.7%) with equally high effectiveness. Conclusions.-Apart from the IHS criteria additional features like nausea/vomiting and migrainous aura may guide the diagnosis of CH. A large number of CH patients do not receive adequate treatments. (Headache 2006;46:1246-1254).

PMID: 16942468 
=====

Explore the buttons, left, starting with the OUCH site and its many links.

---

1st off, welcome!  As the saying goes, I'm damn glad you found us but sorry you had to.

Now educate yourself.  There is no more effective beast killing weapon than an educated clusterhead.


bradincanada wrote on Aug 25^th, 2010 at 11:49am:

Silly question, When you say oxygen, what do mean by that?  Do you all have big oxygen tanks in your house?  Or do those little handheld canisters work?

Personally, I have 8 e-tanks and one large m-tank.  I carry the smaller e-tanks around to work, the store, etc...  Basically any time I can't get to the big tank.

The rest can be found in the link Bill provided above.  This stuff really works.  In fact I can abort quicker using O2 than I can with Imitrex.

Good luck...

-Dennis-

bradincanada wrote on Aug 25^th, 2010 at 11:49am:

- Do you all have big oxygen tanks in your house?  Or do those little handheld canisters work?

Hi Brad, I believe it's common for us O2 users to use the pretty big M tanks for home use, and easily portable E tanks for the car, office, etc.

The E tanks can run out pretty quick when breathing high LPM O2 as recommended in the sidebar oxygen info that Brew linked you to above.

I have e-tanks at home.  I have 7 tanks at home pretty much all the time.  When I'm not in cycle, they gather dust in the garage.  When I'm in cycle, one holds a place of honor in the family room behind my chair.

You will go through them pretty fast even at 15lpm which is the max my regulator will go (although, next cycle, I'm thinking of getting a higher max regulator, which will use the o2 even faster).  Generally, at high cycle, I'll use about a tank per day.  My husband is now good friends with the people at Apria (o2 supplier) as he sees them alot when I'm in cycle...

Currently, I'm taking verapamil and magnesium for preventatives and they work great!  Just tried to wean down on the verapamil as I hadn't had a hit or even a shadow in a couple weeks, but on the 2nd day got hit with a heavy shadow in the evening again.   >:(

I'm working on a cycle that's lasted about 3 1/2 months now -  >:( >:( >:(. 

Welcome to the board.......a common approach? kinda sorta. There are those who use alternative methods  like     clusterbusters.com      they have been showing some great success stories with people for whom traditional meds had failed.

There are those who use ONLY abortives, believing many of the prevents we use extend cycles. There are thos who use ONLY oxygen, as they believe Imitrex and related triptans increase cycles. Then there's folks like me who combine and use a 2 pronged approach. 32 year sufferer and this is as close to owning the beast as I can get!!!

1: A prevent as Bob mentioned. A med i take daily to reduce the frequency and intensity of my hits. I use lithium at 1200 mg a day. At that dose if i didn't tell you I was on it you'd never guess, some are scared away from lithium by the Hollywood stereotyped mouth breathing zombie! At that level it blocks 60-70% of my hits.

Verapamil is the typical first line prevent docs try, has a high success rate, is taken at a level most docs don't see, some go as high as 960 mg a day to get relief. At higher doses side effects are constipation, a risk of heart arythmeas, and erectle dysfunction! :-/  (It's temporary and power is restored when you go off it. ;))

Topomax also has a loyal following but also has a large group who refer to is dopey-max....some who use it found it made them loopy, they couldn't remember anything.

1: Abortives. Your first line abortive should be oxygen. I keep an 8-pack of E-tanks in  my garage. I feel an attack start, begin huffing 02, 6-10 minutes later I'm pain free. Beats the old 90-120 minute rides of old.

Imitrex injectables, expensive but worth it when I get caught away from my oxygen.

Energy drinks, monster rock star, the trick is the combo of caffeine and taurine. Chugged at the first sign of a hit it will abort or reduce a hit for many. I use it with my oxygen, seems to help prevetn the come backers.

Educate yourself here, you'll enjoy a much higher success rate with treating your CH!

Joe

bradincanada wrote on Aug 25^th, 2010 at 11:07am:

My ultimate question is: "If you met someone that was about to get their first CH, what would you tell them to do"

First off, as others have said, learn all you can about it. This is the best resource I know of.

Next, try and find an MD that knows something about CHs.

You will likely need A) a preventative med B) an abortive med and C) oxygen ( not in order of importance).

Prednisone is a great preventative med, but has some wicked side effects. Verapamil is a good one too, but ( in my experience) not as good as prednisone. Chronic sufferers may use lithium, but not usually episodics ( like you and me). Topamax is commonly used, but ( again my experience only) has limited effectiveness and makes you a zombie.

Triptans ( like zomig, relpax, axert, imitrex) are the most common abortive meds and usually work well, especially when used with O2. I must have them within arms reach at all times during a cycle.

Oxygen is a must for sufferers, but many MDs are skeptical.

It can be overwhelming at first, but these are the nuts and bolts IMHO. Hope some of this is useful to you.

I can't thank you all enough, first it is great to know others go through this too (sorry to say, I wish none of us went through this - but I'm not alone is my point).  I try explain the pain to people, and they don't understand.  I live in Calgary, which is just west of the rocky mountains, and people in this city will often suffer from migaines.  We have very sudden and drastic changes in temperature (literally from -5F to 70F in the matter of an hour in the winter time), so headaches are common - but no one really knows what I go through, except for you folks. 
Thanks again for your advice, and will give the O2 a try.  I have a feeling I will be on here for the next few months, because it is that time of year for me.
Thanks again,
Brad

For those who you feel need to understand your pain, this letter to employers and colleagues does a pretty good job. Print a few and hand them to those folks:

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