Good morning to all,

I am 28 years old and have been experiencing cluster headaches over the last 2/3 years.

After reading a lot of post on this forum, I consider myself ''lucky'' not to be in a very ''extreme case''.

I am just having a ''crisis'' right now and it works as following:

--> It Triggers with a Approx. 8/10 seconds intense pain.
--> Then stop suddenly, and restart for 1 up to 3 seconds every 2/3 minutes or so. It's been going on for 2 hours now.

It obsesses me and I can't do anything else but awaiting for the next strike.

The last time it triggered was around 14 months ago (October 2016). I stayed ''on'' for about 1 week, with degressive pains and then disappeared.

I went to see an ophthalmologist and have been suggested to drink caffeine and follow a ''rehab'' program since my left eye is slightly divergent. (a small lazy eye issue).

My questions are :

- What are you doing to ease the pain during the crisis period?

- On a long term, what has been effective for you, to delay/lower the chances of having more Cluster Headaches?

- Is it ''common'' to have Cluster Headaches increasing in term of occurrence and ''crisis duration''.

If it happens to me 1 week every 14 months,
I think I can handle, but I am pretty terrorized about the idea of having the frequency increasing... is it something I might expect as per your own experiences?

Thanks a lot 
Det'

Hi Det and welcome

What you describe sounds quite unlike CH with it starting and stopping over seconds / minutes.

This is something that you need to see a headache specialist about as GPs, even most neurologists just don't have the skills or experience to diagnose and treat.

There are a lot of headache types, with the standard diagnostic criteria being found on this web site -> Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Add in the CH you have and it can be pretty complex to sort out which one(s) you have. Whilst many of the symptoms are easy to check, just about all of them have something like "not better accounted by something else". So you have to rule out all other possible causes of the symptoms, which is where the expertise comes in.

From your questions:

- What are you doing to ease the pain during the crisis period?

Depending on the headache type(s) there are normally a combination of preventives / abortives which can be used. Using these along with avoiding (where possible) your know triggers will improve things.

- On a long term, what has been effective for you, to delay/lower the chances of having more Cluster Headaches?

For me I've used multiple different preventives including, in order of effectiveness, nortryptylene, verapamil and vitamin D3. The D3 has been the most effective for me. But you need to find out what will work best for you as we're all different.

- Is it ''common'' to have Cluster Headaches increasing in term of occurrence and ''crisis duration''.

CH seems to vary, with things like pain location, cycle duration, gaps between cycles, what preventive works, dose level required and more changing for people during a cycle or between cycle.

It is clear that you're concerned by what is happening, which is perfectly natural and normal. So what you need to do is to work with your medical professionals to get an updated diagnosis and to work out what is the best way forward for you based on your medical history.

Do keep a headache diary and record things like the date, day, time, symptoms, duration, pain level, medication used and anything else, e.g. possible triggers. This can help with the diagnosis.

As Brian said, best of luck in getting on top of this and keep us updated.

We recommend a headache specialist, who is a neurologist who specialises even more in headaches.

You might do some reading on SUNCT or SUNA.  My nuero thought that was what was wrong with me although I am not entitely convinced and he started me on lamotrigine.  It has helped lessen the frequency of the smaller attacks but I still get longer ones more like CH...