Hi, my name is Clint, I'm 33 and have been suffering from this condition since my early 20s.  My remissions back then varied so much that I had no clue what was going on.  Now my remissions are at 1 year +or- a month or 2 each cycle.  Sometimes I get lucky and can knock them out with 2 Aleve at onset if I catch them at the very 1st acute sign, but when that fails I rely on Imitrex injections.  I'm currently in cycle with no Imitrex, believe it or not, may be a God send, it's what lead me here. I'm married with a 9 year old step son and my  baby boy will be 2 in December.  I work in corrections, not a very conducive enviroment for someone suffering the hell we all know too well. Anyone here able to give me any advice on how not to use all my sick days as I wait on my Imitrex?

Hi Clint welcome to where you didn't want to come but we're glad you found us.

It looks like you're not taking a preventitive, like verapamil, which can often stop you getting some of the attacks.

If you do get an attack, try drinking an energy drink, like Red Bull, that has caffeine and taurine. This can reduce for many the duration and intensity of the attack. Oxygen (look at the info via the link on the left) can work wonders for many by stopping a CH within minutes of it starting.

By using the preventitive plus energy drink / oxygen when you do get an attack you should be able to avoid needing to use imitrix and sick days.

Start reading the other posts, especially in this area of the forum as you'll see a lot of other suggestions that can really help you get good control over your CHs. And if you've questions, just ask.

Read the PDF file and print out the whole 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]

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What they said.  :)

Mike did a great job of condensing into a synopsis the practical approaches that enjoy wide popularity here, and his suggestion to read the other posts in this area of the forum is very important too IMO.

Personally I have kept some imitrex injections on hand as a back up abortive (O2 is my first line abortive), and this imitrex tip for how to stretch doses is critical: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Meantime, if you find yourself without O2 or imitrex, a couple things that abort attacks for some of us some of the time if done right at onset are:

1) Deep breathing of freezing air with nose right up to the blasting car air conditioning vent. The attack should have disappeared within 10 -15 min. if it's going to work.

2) Extremely vigorous exercise, such as "sprint til you drop".

  Thanks for the info so far.  I'm on Topamax, but still fighting the beast way too often.  I keep Mt. Dew and Chocolate handy for the caffeine, but usually doesn't seem to help.  I will try the energy drink, I don't know why I didn't think of that.  O2 therapy doesn't seem to be my thing the few times I've been connected at the hospital, it hasn't seemed to have any effect.  Now that I know this support group is here, I'll be reading as much as possible, and if I can ever do anything for any of you, I'll do all I can.
Thanks again, Clint

With the energy drinks the caffeine acts as a vasoconstrictor with the taurine acting as a calcium channel antagonist (just like verapamil). It seems that the pressence of both is what makes the difference.

For oxygen to be effective it really has to be used correctly, as explained via the link on the left. It's quite possible that it wasn't used correctly when you were at the hospital, possibly with not a high enough flow rate or not using a non-rebreather mask. It's also important to start it early for it to be effective.

I'm afraid Mike is right - the bozo laden medical profession is way behind regarding O2 and CH.

This site is actually the main place CH'ers find out about how to use O2 in a really effective manner, and so many of us have found great relief using O2 as outined in the oxygen info link, after the old and dumb low flow/rebreather method, still universally clung to by ignorant medical professionals, failed us.

I'm not sure the topamax is working for you. Have you considered verapamil, or lithium? lance

You've been given some great advice, I'll re stress 2 points. Oxygen needs to be used correctly or its worthless. I average about 6-8 minutes per abort now. The keys:

A high flow regulator, at least 15 LPM, preferably 25 LPM or better.

A Non Re Breather Mask.

Get on it at the first sign of a hit.

If Topomax doesn't appear to be doing the trick as a prevent look into Verapamil or Lithium. I use Lithium at 1200 mg a day while on cycle. It will block about 60% of my hits.

Glad you found us!

Joe