Hi everyone just joined and just enduring my second bout of ch in the last six years. First bout lasted about 6 weeks, nothing at all for the intervening period and now currently 6 weeks into to this one. Up until Christmas most were fairly mild (i know this cause first time round I had some humdingers). Since Christmas the intensity has increased massively culminating in two three hour ones over Thursday and Friday (I'd gotten into the habit of timing them so I knew how long to go - horrible disappointment when it kept on going). Currently on 100mg sumatriptan 3 times a day when needed, cold towl's rapped around the head and generally bouncing off the walls.

Just discovered two areas of relief, one surprisingly is to rub vicks into the forehead, The other is 15 mins of oxygen. For me the oxygen has been amazing.

I read the scale provided on the site and the only reason I don't class myself as a 10 is that I don't feel suicidal - but I can fully understand why that's been included. At its worst I was running round the house, sticking my head in a cold bowl of water and generally scaring the life out of my wife. Which prompted lots of calls to doctors and a delivery of oxygen two hours later.
My sympathies to everyone else in our "elitist" club

Great that you have oxygen, the abort time seems a little long. How high a flow rate do you have on the regulator? 15 LPM is what we have found to be bare bones minimum for most, with some needing to go upwards of 45 LPM to get relief. Are you using a Non Re Breather Mask? Rebreathers and nasal canulas are not good.  I run 6-8 minutes on my aborts, from attack to completely pain free.

Has the doc discussed any other prevents with you? Verapamil, Lithium or Topomax? And have you ever tried the injectable imitrex?

Also, look into energy drinks, rock star, Red Bull, any containing caffiene and taurine, chugged at the first sign of an attack many can abort or at least really reduce their hits.

Welcome to the board!

Joe

Hey crosspescara,

Those 3 hour ones suck! I know.  :(

The vast majority of us find that imitrex (sumatriptan) pills aren't nearly as effective as the injections, which will abort an attack within minutes. It's imprtant to know that the injection doses can be "stretched" - here's the skinny on that: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

It would be very unlikely for a headache specialist to prescribe pill form for CH, so if it's safe to assume you haven't been to one, that could be something to add to the CH to do list.  8-)

You're smart to come here because so many of us find that the info and advice enables us to tweak our treatments in ways that bring much more relief.    :)

I assume the Imitrex are pills. If so, change to injection; far faster acting; pill not well favored because it's action is too slow.

See the PDF file, below and read the entire version of this abstact.
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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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Thanks for the info. The oxygen has been amazing, the 3 hour attacks happened before i had the O2. At moment 15 minutes at 12l seems to do the trick. Up until now all I have seen is my local gp who has only had a limited exposure to ch. Having said that she got straight onto the specialist who immediately told her to prescribe the O2. I have a consultation on Tuesday where they will be considering the injections.

Many thanks for the swift and helpful replies

"The Three Hour ones suck!"

I think I might get a bumper sticker made and see how many people honk!!!!

Do try for a higher flow regulator....most find a direct relationship...higher flow, faster aborts.

Joe

Hi Joe,
The O2 is supplied by UK NHS so I get what I'm given, having said that so far its been effective. What I really want is portable O2 cause at the moment I cant work
Garry

Don't know wether Im coming to the end of my current cycle - about 7 / 8 weeks in now, but I decided to try the water treatment. Currently guzzling about a pint an hour, it seems to be having a very beneficial effect. The frequency has widened, duration is shorter and at lower level of intensity

I'm a big believer on the water treatment, not a cure all by any means but certainly seems to lessen the hits. Hoping yours is winding down.

Joe

I think the best news to any of us is when someone is coming to an end of their cycle and the beast leaves.  I swear I feel like I have a brand new life.  I'm not even half way through yet.

For me the O2 has been the one thing that has kept me from just giving up.  I would go through kip 9-10's daily along with some milder ones and all I wanted to do was just stop the pain.  If it wasn't for this site and the understanding that they all have, that this isn't just a headache and the info they provide, I don't think I would be here.

For me the pills work along with the O2.  If I use just the O2 it will abort the pain but it comes back within a couple of hours.  If I use the o2 and add in 50 mgs of Imitrex (major hits) I get most of the day.  My nights are the worse or early mornings.  This morning it's snowing and icing out and I woke up with a real winner.  I ran down stairs got on the O2 and took a pill and I'm OK.  It's a good thing since I had to take my little one to school in this mess.

I wish you the best and many PF nights and days.

Sami

I agree with the water treatment. I only tried it when I discovered that being dehydrated made a brief attack come on. So I figured, if dehydration caused an attack, let's see what happens if we do superhydration, and sure enough, it eases the symptoms. Like you said, it doesn't kill the pain, but with the other abortives, it definitely helps.

Hi Mike,
Pretty much discovered water in the same way you did.
Had a monster yesterday, mine normally last 45 - 60 mins, to the point when I will look at the clock and start the count down! Yesterday's was a 3 hour epic, left me wiped for the rest of the day.
I think the problem is balancing the sumatriptan. Got 300mg a day in 3 tabs. 1 full tab last approx 6 hours, that leaves 6 hours a day uncovered. Was also a long way from home and no 02.