My name's Matt and I've been suffering from these headaches since 1997.  32 years old now.

The headaches come on average once per 18 months.  I've had them in all seasons, they were at their most consistent coming every summer while I was in grad school.

The pain is always focused on my right temple, radiating outward.  My eye and nose will sometimes water.  Pressing on and around the temple provides enough relief that I do it constantly during a headache - but not nearly enough to be happy.

The pain will vary.  There's sometimes when I can actually get some work done (analytical stuff), other times it's bad enough I moan and rock and really can't maintain much beyond a very brief conversation.  I will say I don't think I get it as bad as some people - I've experienced "10" level pain with unrelated stuff for a few seconds where I'm literally not self-aware of anything but pain - thank goodness my headaches don't get to that point.

I get lesser pain in the same area immediately preceding the headaches.  Sounds like the "shadows" others on here describe.  I also get this minor pain sometimes not in a cluster - and sometimes during a cluster the minor pain will just kind of stick around, not turning into a full headache, but still capable of ruining the day.

I have TMJ.  Doctors I've seen tend to think that that's related to the headaches.  The last neurologist I saw said my headaches had some characteristics of migranes in addition to clusters, and said it wasn't that clear cut the difference between them.

My lone medication since about 2004 has been Zomig.  It's worked well enough for me that until this past week, I've considered the problem under control.  I had tried Immitrex, made my arm tingle, didn't like that so much, though it also seemed to help with the headaches.  Prior to that I doused myself with Excedrin Migrane, which I didn't realize wasn't doing anything at all until finding stuff that actually worked.

My headaches have typically started with a week or so of 1 or 2 headaches every day, become less and less common and then disappearing after a total of 3-6 weeks.  Headaches typically last 1-2 hours.

A cluster started 2 weeks ago and was behaving normally - then I went a music festival in the desert, followed by getting a cold.  From the last day of the festival through this last week, I've been getting 4-6 headaches a day.  This has meant having to go through some headaches without medication - and yesterday a headache went 4 hr at full strength before I ended up taking a pill.

I am worried about the headaches now in a way I haven't been before.  I was recently laid off (and stress is probably part of the reason the cluster is happening), and I'm wondering how I would explain what's happening to my boss if I were still working.  To say nothing of concerns over whether this is a sign of things to come - or if it might get even worse over upcoming years.

To deal with the amount of headaches I've started cutting up pills.  The pills are 5mg.  The 2.5mg half-pills seem to work fine if I take them early enough, but I seem to have even less lead times than I do with 5mgs.

Currently trying a 1.25mg quarter-pill, to see how that will work.

I have an appointment next Thursday with a neurologist.  Until then, having read on these boards, going to start trying some melatonin and some energy drinks.

Now I have been reading the boards here, but any direct insight would be greatly appreciated:

-Dangers of taking way more Zomig over a month than they say too?  (Been doing this for years, but have never felt great about it)

-Dangers of taking more than 10mg Zomig in a day?  Never done this before this cycle.  This time I've gone up to 12.5mg a few times.  If the quarter-pills work, this won't be an issue any more.

-Danger of simply taking Zomig too often even at a very small quantity?

-Any concerns with taking Zomig, melatonin, energy drinks together?

Thank you so much for your time,
Matt

Hi Matt.....Welcome!

First off.....Zomig nasal is faster acting than pills for CH, but you really need to check out the O2 info on the left hand menu. If it works for you it'll be your new best friend.

Bill

Yeah definitely.

Oxygen has always sounded like THE thing to use if the situation was bad enough.  First thing I'll ask the doctor about.

Hadn't heard of the nasal spray until this recent mad search through the internet.  Sounds great!

Thanks Bill!

No, oxygen is THE thing to use BEFORE the situation gets too bad. Honest to God.

Hi Matt,

A common cold is regularly cited as a trigger event for the onset of an episode or the aggravation of an existing one.

Given that you have seemingly only been using Zomig pills in the past I believe that you need to concern yourself with the fact that you are only employing one single abortive to manage your condition (and with that not the most effective one).

Subject to your existing TMJ condition my advice would be to discuss a suitable preventative treatment with your doctor. This will render Zomig as the secondary abortive it should be, for many here are likely to concur that O2 and not Zomig is the abortive of choice. You may also find that injections or nasal sprays are superior to the pill form, given that they often only start to show effect when the attack is nearing its end.

There is some evidence to suggest that Zomig overuse may (though doesn't have to) cause rebound headaches.

In regards to dosages, several clinical trials seem to support that the 5 mg formula is not more effective than the 2.5 mg one, whereas less people achieved relief from dosages below 2.5 mg.

O2 at 15 lpm or more is likely to abort your attack significantly faster than any Zomig pill, without any of the risks associated with overuse and I suggest that you make this, as well as a suitable preventative medication part of your discussion during your upcoming neurologist appointment.

Below is an excerpt from one of Bob Johnson's previous posts on triptan safety for your reference.

************

Headache. 2004 May;44(5):414-25.Related Articles, Links
Consensus statement: cardiovascular safety profile of triptans (5-HT agonists) in the acute treatment of migraine.

Dodick D, Lipton RB, Martin V, Papademetriou V, Rosamond W, MaassenVanDenBrink A, Loutfi H, Welch KM, Goadsby PJ, Hahn S, Hutchinson S, Matchar D, Silberstein S, Smith TR, Purdy RA, Saiers J; Triptan Cardiovascular Safety Expert Panel.

Department of Neurology, Mayo Clinic Scottsdale, AZ 85259, USA.

BACKGROUND: Health care providers frequently cite concerns about cardiovascular safety of the triptans as a barrier to their use. In 2002, the American Headache Society convened the Triptan Cardiovascular Safety Expert Panel to evaluate the evidence on triptan-associated cardiovascular risk and to formulate consensus recommendations for making informed decisions for their use in patients with migraine. OBJECTIVE: To summarize the evidence reviewed by the Triptan Cardiovascular Safety Expert Panel and their recommendations for the use of triptans in clinical practice. PARTICIPANTS: The Triptan Cardiovascular Safety Expert Panel was composed of a multidisciplinary group of experts in neurology, primary care, cardiology, pharmacology, women's health, and epidemiology. EVIDENCE AND CONSENSUS PROCESS: An exhaustive search of the relevant published literature was reviewed by each panel member in preparation for an open roundtable meeting. Pertinent issues (eg, cardiovascular pharmacology of triptans, epidemiology of cardiovascular disease, cardiovascular risk assessment, migraine) were presented as a prelude to group discussion and formulation of consensus conclusions and recommendations. Follow-up meetings were held by telephone. CONCLUSIONS: (1) Most of the data on triptans are derived from patients without known coronary artery disease. (2) Chest symptoms occurring during use of triptans are generally nonserious and are not explained by ischemia. (3) The incidence of serious cardiovascular events with triptans in both clinical trials and clinical practice appears to be extremely low. (4) The cardiovascular risk-benefit profile of triptans favors their use in the absence of contraindications.

Publication Types:
Consensus Development Conference
Research Support, Non-U.S. Gov't
Review

PMID: 15147249 [PubMed - indexed for MEDLINE]

Count me in as another amongst the hordes upon hordes here who have had a good experience with the O2 as outlined in the oxygen info link to the left of this page.

Plenty of helpful stuff to learn here, and perusing the replies in the other topics in Getting To Know Ya is a good way to get a quick synopsis.

The clusterbusters.com forum may be something you'd be interested in - they focus on a particularly promising, natural and potentially very powerful realm of CH prevention that is well outlined in this recent Newsweek article:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Brew wrote on Apr 24^th, 2010 at 10:55pm:

No, oxygen is THE thing to use BEFORE the situation gets too bad. Honest to God.

   WHAT BREW SAID ONLY REAL LOUD.

            Potter

Just want to thank all of you for your advice.  Much appreciated.  :)

Hi Matt...

I found that energy drinks help a lot!! the moment you feel it coming just drink one can right away...
I also find that hot compresses very helpful but its individual..

Welcome aboard and sorry to hear that you have the beast

What works well for many is a 2 pronged approach to manage CH.

1: A good preventative. That's a med you take daily, while in cycle, to reduce the frequency and the intensity of your hits. I use lithium at 1200 mg a day, blocks about 70% of my hits. Don't let the Hollywood stereotype of lithium scare you, if I didn't tell you I was on it you'd never know! Verapamil is usually the prevent doc's try first, very effective for many, topomax is also used by many on the board.

2: A good abortive, the attack starts, now what? You may have heard oxygen mentioned... ;D...yeah...over 30 years of CH here and 02 is still my fastest and most effective abortive, generally 6-8 minutes and I'm pain free. Read the link as it needs to be used correctly ot it loses much of its effectiveness. I occasionally resort to Imitrex shots when I'm really getting creamed or find myself (foolishly) away from my oxygen.

Welcome to the board, there is more knowledge on CH here then anywhere in the world, with this condition, knowledge is your best hope for effective pain management.

Joe

HI matt,

Welcome, i'm a newbie to the forum also. However been suffering with what up until recently has been diagnosed as non specific migraines. Last month i ended up in the hospital. one CT and one MRI later and finally the problem was found. Cluster Headaches. They gave me o2 and verap. i was already on imitrex and lortabs for the original diag.

I just want to say that i agree with my fellow CHrs, o2 is my best friend. If I catch it as it begins with o2 it goes almost completely away, if i use it during it makes the pain more tolerable. either way it makes me feel better, and with our condition every little bit counts.

[smiley=cheesy.gif]

dv8r_dragon wrote on Apr 26^th, 2010 at 10:24pm:

one CT and one MRI later and finally the problem was found. Cluster Headaches.

Just a point of clarification: CT and MRI cannot diagnose cluster headache. They only rule out more nefarious conditions.

thx brew, no it was not the mri or ct that found the ch. it actually was the treatment methods that ultimately made the drs realize what was going on.

sorry if my last message was misleading to this fact. they actually did those test because for some odd reason they thought i was having a stroke...even though i didnt have any stroke symptoms,....well other than pain

dv8r_dragon wrote on Apr 27^th, 2010 at 12:58pm:

they actually did those test because for some odd reason they thought i was having a stroke

As any responsible doctor SHOULD do.

You find out what it is by ruling out what it isn't.

agreed. better to be sake than sorry :)

Hey guys!

First off, thanks for the additional welcomes and advice.  Much appreciated.

I wanted to give an update, in particular because things have improved rather amazingly.  Following reading some of the treatments used on this site, I started taking melatonin.  People said it didn't stop the headaches but made them not as bad.  I'll say that's accurate, but when I read it, it didn't sound as impressive as what I've experienced.

Within 12 hours of taking 12mg of melatonin, my headaches were reduced to basically the pain level of normal non-cluster headache (I haven't taken a Zomig since).  It's possible that it's coincidence, but I doubt it - I've never seen such a quick drop off in all my years of these headaches.

Anyway, I've now seen a neurologist and am set to try new strategies if/when the really beastly headaches come back, but for now I'm doing okay again.  I'd recommend everyone give melatonin a shot.

Cheers,
Matt

I wanted to give an update.

I started a new cluster this May, a little over a year after my last cluster began. However, this time I took melatonin from the beginning.

I feel so fortunate to be able to say that it looks like I've now made it through an entire cluster without using a heavy duty medication like Zomig. The melatonin definitely doesn't stop the clusters, but I can live with them now.

I know we're all different, and not everyone will be as lucky as me, but if you have not tried taking melatonin during your cluster, I would urge you to give it a shot.

You are taking it just at night, right before bed, right?

Quote: "I have TMJ.  Doctors I've seen tend to think that that's related to the headaches."

No, it's not. Correcting the TMJ will only do one thing, correct the TMJ. It will not change the cluster headaches.