Hello. My name is Matt, I'm 24, and I am now on my second cycle of cluster headaches. I vaguely remember getting these types of headaches when I was very young, but nothing was ever done and I was never diagnosed.

In the spring of 2009, I started to get a very intense pain behind my right eye about twice a day. I initially thought it was just migraines, but after the second week the pain was so intense I had to go to the ER. They did a CT scan (which came back negative) and sent me on my way with some headache meds.  The meds never fully worked and after another 2 weeks I was sent to a neurologist. She diagnosed me with cluster headaches and prescribed Maxalt. The Maxalt worked well, but luckily I only had 6 more attacks before the cycle was over.  And all was well for about 2 1/2 years...

In late August, I started to feel the same feeling behind my right eye that I felt back in 2009. The cycle had started again. Luckily I got to a neurologist quickly and was put on Maxalt. He also put me on low blood pressure meds as a preventative measure.  They really haven't worked and I still get about 1-2 attacks per day. He recommended oxygen. My mom happens to be a dentist, so I have a endless supply of oxygen whenever I need it. It works great!

To be honest, if it weren't for oxygen, I would have probably tried to kill myself.  When the attacks get really bad, I have no choice but to think of ways to make the pain stop. Sometimes, I think the only way out is death. I have told my doctor this and he seems understanding. It's hard to explain to people what I'm going through when they ask, "what's wrong?" I tell them "cluster headaches" and they seem less than impressed. They don't understand the pain that I feel.

Basically, I came to this site looking for answers to my questions:

1) The Maxalt and other drugs tend to make me super tired and the pain from the attacks tends to knock me on my ass.  Luckily, I'm in a job at school that is very flexable with my schedule, so if I feel an attack, I can wait until I'm okay to starting working again. Between the attacks, being tired from the pain and meds, I don't know how someone could hold a regular 9-5 job. Is it possible to live a normal life?

2) I've started the water x3 treatment, does it really work?

3) I went 2 1/2 years without an attack, how long do most people go?

4) Is there anything specific that triggers them? ie smoking, drinking, a particular food?

5) Is it possible to get a portable oxygen tank prescribed? My doctor didn't think it was possible for insurance to cover it.

6) What are some med (preventative and abortive) that you all think works?

If someone could answer one or all of my questions, I would be so greatful. This site has already been super helpful! Thank you so much.

-Matt

Welcome to the board Matt  I’ve had CH for 33 years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach:

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

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E tanks are what I use, they're portable, on cycle I always kept a tank in the trunk of my cruiser. I'd get hit, pull over, fire off the 02, 10 minutes later I'm back on patrol. Even if insurance won't cover it, they are only about $5 a month to rent and $10-$15 a refill. I was with kaiser and even they covered the 02 when they saw the comparison between 02 and imitrex injectables.


Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.

Go to the meds section, read the post "123 PAIN FREE DAYS AND I THINK i KNOW WHY." It’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s a long read, worth the time.

For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com

The biggest key to oxygen is getting on it fast, and use it at a rate to support hyper ventilation. Doing that my aborts run 6-8 minutes. I never tried the water treatment but it has worked for some. As to how long between cycles, that runs all over the board.

Triggers. On cycle my triggers are alcohol, sleep cycle disruptions, letting myself get really hungry, and sustained periods of stress. Alcohol is the more common of the triggers, as you read the board you'll see they're very individualized.


Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe

Just a few answers....




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]
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A couple of 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
ALL NEW!! HEADACHE 2010-2011
Robbins Headache Clinic

Free, 50-page. Covers all major headache Dx and
related issues.

In a PDF file.
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See the PDF file, below.

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Matt,
Its unfortunate to hear that you have CHs and that you're currently in cycle, but I'm glad that you found CH.com. There are plenty of experienced and knowledgeable members of this site who can recommend treatments, doctors, and other methods to help cope with the pain.

Although often referred to as the "suicide headache", little evidence is offered to prove that those with CHs have a higher suicide rate. The label refers more to the fact that CHs are extremely painful and many suffers would do ALMOST anything to get rid of the pain.

In comparison to some here, I'm only a rookie with 12 years of CHs under my belt. In all of those years, I have only had O2 for 3 months and imitrex for about 1 year. The rest was spent dealing with the pain best I could. We are all here for you if you need us. Make sure you try the 123 pain free days and other alternatives, you never know which one might work.

I think Guiseppi covered it well...
My only addition would be to advise you not to put up with bad side effects from medicines. Maxalt was horrible for me, Relpax worked better with less side effects.
Feeling bad from the medicine may seem better than facing full attacks... but be careful. If you feel bad, your body is telling you something.
Stay strong, keep asking questions, researching and experimenting till you get it right. Don't depend on your doctors.
I am not sure I would want a "normal" life... but yes... keep up with these sites (do check the sister site too), and the quality of your life can be greatly improved. Don't go away when your headaches go away! Stay up to date and prepared for the next cycle... cause they always come back.

Hi Matt & Welcome Home

  Is the blood pressure med you're taking Verapamil?  It was my first preventive after I came here 2/02, got some info to take to doc and had my first PF day in over a year a few weeks later.  If it is Verapamil, the dose is usually tapered up til you reach an effective dose.  I had my first PF day when I hit 240 mg . . .  got as high as 480 mg, then back to a 360 mg maintenance dose, which reduced the frequency/intensity of attacks to a level I could easily kill (usually) with 02.

  Water therapy:  I stopped taking the Verap 5/04, after major surgery and prior to chemo as I had reduced even further the frequency/intensity of attacks and, as long as I had my 02 handy, had no real fear of the beast.  Finally figured out that, due to my surgery (removed bladder and prostate), I'm required to consume large quantities of water/liquids to keep my kidneys & neobladder flushed to prevent UTIs.  If I slack up on water intake, I'm much more likely to get hit and/or start a series of attacks.  It CAN work . . . it IS NOT easy to do.

  Like most here, 02 is my miracle abortive.  I pay $10 per tank, no deposit, no limit on tanks (I keep 20) . . . and you'll want to get an O2ptimask (links on the site) with the big green 3-litre bag . . . a huge improvement over the 1-litre bag your local medical 02 supplier will have in stock.

  My triggers are alcohol (quit 2/02), exhaust fumes, solvents like carb/brake cleaner.

  Get the 02 script.  Call the med suppliers and ask what their cash price is for 02.  Order a 15 lpm (or better yet 25 lpm) regulator off ebay (about $30) and an O2ptimask ($27.50).  Keep always at hand or in vehicle . . . use at the first sign of attack and kill him before the "dance" stage.

  Keep reading, keep asking . . . the answers you will receive come from folks who truly know your pain.

    Be Safe,

      Richard

., . . forgot to add.  I'm also on the 123 Days PF regimen and can report a huge reduction in attacks this past month especially.  When I feel him coming, I'll slam a Rock Star orange energy drink, huff the 02 for a few minutes, and if not killed quickly, add an icepack (still huffing the 02) to finish him off long before I have to consider a "dance".

   Richard