I am offering up my experience of cluster headaches over the last 23 years, which has gone from absolute despair to a state now where I am in control of them and can go through cycles without any headaches at all. I am doing this in case it can help someone who is somewhere on the same path as I was.

This is necessarily quite a long post, I apologise for that.

My headaches started at the age of 21 and were misdiagnosed for about 4 years, till I had the good fortune to see a prominent neurologist who knew exactly what I had.

My pattern was 2 cycles per year, lasting 6-8 weeks, with 1-2 headaches per day (but not waking me in my sleep). The headaches in my 20s were terrible, at the peak of each headache I would always think about suicide to stop the pain.
The neurologist  put me on lithium, oxygen and ergotamine inhaler.

Ergotamine is in effect a strong painkiller to take when a headache is starting. For me it could sometimes head off an attack , sometimes not. Lithium is traditionally an anti-depressant which levels out your moods. Oxygen did not help me but that is atypical I think.

I found that lithium changed me, by removing both the highs and the lows from daily life, it made things just flat and rather joyless. Although lithium and ergotamine were effective in reducing the number of headaches, the key for me was that they were just putting off the inevitable, and when the headache did come, it was stronger than before. It was like the medication was a dam that held back the pain until the dam could not hold any more.

I tried various alternative options: acupuncture, applied kinesiology, craniology, dietician, aromatherapy, something to do with pineapples I seem to remember. Nothing made a noticeable difference.

Eventually my attitude to cluster headaches changed. I had had enough of fighting it, of being angry about it. Where I live in France now there is a strong wind, they say it can drive a man mad. But trees and plants survive it very well and they say here that you have to bend with the wind. like the trees, not fight against it. This is more or less what happened to me with headaches. Instead of thinking of headaches as something from hell, it became an old friend come to visit (I know that this sounds very counterintuitive). Instead of thinking ‘why me?’ and 'when will this end?', I thought of it as a condition that has to be managed, not beaten.

I stopped taking any medication about 12 years ago. The cycles remained as before, but the headaches became less severe, I think because I accepted them. I had the sense that my body wanted to have its say, and so I let it.

8 years ago I started to go through cycles with very few headaches, and then even none at all, just the usual feelings you get that tell you you are ‘in season’. I assumed I was ‘cured’. The neurologist who diagnosed me had told me that the condition clears up in middle age for some sufferers.

But I wasn’t cured, I still got cycles with headaches. Occasionally during a headache I would get angry and writhe, despair, try to dismantle my head, like the old days. But usually I sit in a dark and silent room (the bathroom) and try to be calm, to pay attention to my breathing, and think about the right things. What are the right things? For me it is hit and miss, I tend to spin through different images, impressions, people, sounds, movements, some of them increase the pain, but then I fall on one that sort of puts the pain to one side and gives me relief. This is like the first step on the ladder. If I can follow that up with another good thought, it is like another step up, until the headache will ebb away to a long tail, or sometimes just blow out altogether if it has not gone too far in. I suppose what I do is akin to meditation, but I don't know enough about that to say.

Generally speaking, if the headaches of my 20s, all drugged up, were 10s, the ones I have now are 5s and 6s. Is this because I gave up on medication and stopped fighting it? I don’t know, it could just be the course of the condition. But I do think that going 'bareback' was the key.

After 23 years I actually think now that the reason I get cluster headaches is to stop me drinking alcohol  for the cluster periods. Alcohol has always been the worst trigger, but the pattern the last few years has been that if I stop drinking as soon as I get the signs of a cycle coming, I go through that cycle headache-free. But if I try to carry on drinking just a little longer, for example if we have friends staying I have done it, then the cycle will be a typical one full of headaches.

So my experience distils to two suggestions for cluster sufferers whose experience may in some way mirror mine:
- Try the no-medication approach, but coupled with an attitude of accepting and working out the pain rather than fighting it. The idea may seem abhorrent, but my thinking was: it can’t get any worse than it is.
- Try not drinking any alcohol during a cycle, and stop drinking as soon as you feel the onset of a cycle.

I realise that there is an unknown, wide range of causes, reasons, triggers and possible remedies for this condition, and in most instances my advice is of no relevance, but I offer it in case it strikes a chord with a sufferer and may offer an approach that makes life more liveable.

Hello,  and welcome Paolo,

    I have chronic for 22 years now.  I have tried but there is no way I can sit quietly while experiencing a KIP 5 or 6  and above.  There are several here who espouse to this and I wish I could too.  Most cannot.  I bow to those of you who can.

you said:

Quote:


Actually that is not true.  Caffergot is not a powerful pain-killer. It is a vaso-constrictor.  Ergotamine is in a group of drugs called ergot alkaloids (ER-got AL-ka-loids). It works by narrowing the blood vessels around the brain. Ergotamine also affects blood flow patterns that are associated with certain types of headaches.

It, personally has never helped me but there are a few here whom it HAS helped somewhat.  it is one of the older drugs.

Quote:
  I'm not laughing AT you here.  I'm laughing WITH you. 

I applaud you that you wish to be med-free...but pleaser try the oxygen again.  There is a link (in Yellow) to the left of here that explains just about everything you may need to know.  It could very well be that you didn't have the correct mask, or the correct flow rate.  Most of us swear by 25 lpm.

Stick around and ask any questions you might have.

Linda

I don't 'fight' my headaches. I've had 2 surgeries in the past what...3 months, that make it so that writhing causes more damage  than good.

However...  This does not mean I do not use my oxygen. 15LPM, non-rebreather mask. (The one from the cluster shop.)

If you're still having level 5 and 6 hits, try the oxygen again. But first, make sure that you're using it properly, first. Some people need higher LPM, 25LPM or more... but I didn't.

I also have Cafergot, for when it's out of hand, some narcs I can use if things get out of hand as a last resort before going to the ER, which is rare for me. I have D.H.E., but I can't take that right now.

I'm glad this approach worked for you, everyone is different. But not fighting/not DANCING only made my mental torment easier... Not the physical torment of it.

Paolo wrote on Oct 28^th, 2009 at 3:55am:

Ignorance is bliss.  Get the o2.

            Potter

There certainly can be merit to the idea of avoiding many of the drugs most often prescribed for CH's, and some people do take this approach. RC seeds and mushrooms are prime example of this.

However...... I simply cannot justify unnecessarily enduring sheer agony just to avoid breathing oxygen for a very few minutes. After 13+ years of being chronic, I discovered that O2 at 25-45 lpm was my silver bullet. With the exception of air travel, I am never without a baby sized tank.

That decision is strictly up to the individual and I suspect that it depends almost completely upon how badly they are hurting.

Marc

bejeeber wrote on Oct 28^th, 2009 at 12:45pm:

I think that is safe to assume, but it is so long ago that I cannot remember. I think the instructions I was given were along the lines of 1. Turn on the oxygen. 2. Breathe.

I realised that ergotamine was not exactly cutting edge when I saw it referenced as a migraine cure in Schindler's List.

It bears repeating that I am not advocating this approach for everyone, and certainly not for people new to CH who are browsing this forum. And of course the treatments on offer now are much in advance of what was on offer in London 20 years ago when nobody had heard of CH. It is just an approach that has worked for me and my set of circumstances, and may be of benefit to someone else out there.

It has been over 2 years for me since i have taken a single drop of meds. I still get solo hits but the only thing i have used were the RC seed and 02. I hope to god i never have to use that imetrex again. triptans are no longer my 1st line of defence, they no longer are even in my bag of weapons.
                                             Coach Bill

I am med free as well. But got hit hard after two year remission. Then I scrabbled like a chicken with his head cut off to get more 02. Luckily I had some imitrex that I filled a few months before just to have. Once I stopped using the trex  and started using only o2 and drinking coffee, (which I usually am anyways)  they seemed to get better. Now that my cycle is mostly gone. I got a ton of 02, I think I  am going to hold off on using trex. I am going to get a better mask soon. I am still shadowing now and again but all is good for now. A few nights ago I thought I was going to get wacked but it went away on it's own.  Not sure what is going to happen now. Just enjoy my PF time I guess. 

Take Care PFDAN
Jrcox