After more than 30 years with CH I am now clear for ten years

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I am delighted to tell you that I have now been clear of CH since September 2005. My last CH episode was 10 years ago.

In another month I will be 60 and I suffered with cluster headaches since my teenage years. Since 2005 I have been living a normal life, eating well and exercising moderately, enjoying some alcohol whenever I feel like it. I want to share my experience in the hope that it helps someone else.

I had all the usual classic symptoms – typically I would be woken from sleep before dawn and suffer 2 or so hours of agony. I used to get cluster episodes once or twice a year around the change of seasons to Spring and Autumn. Drinking alcohol would bring on an attack within minutes during cluster period. Likewise strenuous exercise, or even a hot drink on a cold day if things were really bad. Cluster periods lasted about six to eight weeks. Over the years I tried lots of remedies (Pizotifen, Predisilone, Sumatriptan, Amitriptyline, Imigran, high volume oxygen) with varying levels of relief. I had private medical cover from my employer, so I had lots of tests (e.g. allergy tests, sleep apnea tests at Papworth etc) and tried lots of things. After reading something on the internet I even tried Capsicum (Chilli) in the nostrils – Take it from me “Do not try this at home” it only adds the misery of burning nasal tissue to a CH! Over the years, I was examined by Mr Cozens, Dr Morgan Hughes, Prof Goadsby and others. i.e. I was a classic sufferer, desperate for relief.

As many others have noted, the CHs seem to affect memory, so I kept a CH diary.

I do not know EXACTLY what brought about this pause / end to my suffering: The only significant thing that changed about 10 years ago is my dental regime, and actively trying to stop snoring.

I had changed dentists, and the new one has gradually replaced all my mercury amalgam fillings - I had about 8. She is a stickler for dental hygiene, and got me to start using dental floss religiously (twice a day), and a small pick style toothbrush to ensure the gum line is absolutely clean, as well as my normal toothbrush regime. (I still have all my teeth, in pretty good shape too.)

I also started using a device to alleviate snoring. It's a little plastic gadget like a rugby players gum shield. It took a bit of getting used to. You wear it at night and it holds your lower jaw slightly forwards and prevents snoring (for some people). However, it only covers about the front 4 rows of teeth, so the back molar teeth are held apart. I am sure that I used to grind my back teeth when asleep, and the device has stopped that simply because they are not in contact. There are a few brands of these devices on the market. I use the one called "sleepPro custom" after trying their basic version first to see if it worked for me - which it did. There are Chinese versions of the basic device available for a few pounds on ebay.

So, in summary, ranking the possible relief factors from most likely to least likely, in my own opinion;

No grinding of back teeth while asleep (my hunch is that this was the key)
Much reduced snoring (possibly more oxygen to brain during sleep?)
Fewer bacteria in mouth
Fewer mercury amalgam fillings (doubt this one, but cannot absolutely rule it out)

I sincerely hope this helps someone else, and that they have the same luck as me.