Hello all. I have just joined this message board, and I apologize in advance if I am not posting in the correct place. I am a 46 year old male who was diagnosed with cluster headaches in 2004, and I have been experiencing them since 1999. My story is pretty typical of those who have episodic cluster headaches: sometimes they retreat for months or even years, but they eventually reemerge.

I am also a grapheme-color synaesthete, meaning I see colors when viewing letters and numbers; words become patterns composed of the colors corresponding to each individual letter. (No, I'm not high).  8-)

Anway, to get to the point: during my readings about synaesthesia I have noted that headaches are a common complaint among people who have this condition. Do any members here have any form of synaesthesia, or know of any correlations between this condition and cluster headaches?

I should also point out that my mother has been a lifelong sufferer of headaches (although always diagnosed as migraine) and is usually hospitalized once a month. She is also a grapheme-color synaesthete. I don't want to jump to conclusions, but I've entertained the possibility that the two conditions could piggy-back one another.

Wow that's a new one on me! I hadn't heard of that condition before and have never heard it mentioned on the board. That being said, are you working with a decent neurologist? More so with someone like yourself who has a VERY unique condition in addition to the CH you'd really want someone who is on top of the headache game.

Do you have an effective abortive and preventative strategy for dealing with your headaches? Do you have oxygen yet?

I'm a little older then you, 55, and was an episodic sufferer for over 30 years, spring and fall cycles 8-16 weeks. I say  "was" a sufferer because I'm an eternal optimist! I started the "Batch" regimen in 2010 and have been headache free ever since. Go to the medications section and start reading the first two topics, "123 pain free days and I think I know why" and the "anti inflammatory vit D-3 regimen" topic. It's all OTC stuff, good for you even if you're not a CH'er, and has been keeping a lot of us pain free. Glad you found us welcome to the board.

Joe

Welcome Gravity Rising, You have come to the right place for help and support on CH, but what a strange condition that other one is. I've never heard of it before.

As your mother also suffers from the condition you clearly inherited it from her. CH, can also be inherited, and as CH is often misdiagnosed as migraine, it's quite possible your mothers migraine is not migraine after all.

There could quite possibly be a connection - nothing surprises me with CH, but it's also possible you have just been unfortunate enough to inherit 2 seperate conditions.

It would be interesting to know if the CH treatments have any effect on the  grapheme-color synaesthete. Let us know.
Maz.

Dear Maz and Guiseppi,

Thank you for your replies, and also for leading me to the resources you mentioned.

I am seeing a good neurologist; I'm a US citizen, but I live and work in India. The treatments I get here have been identical with those in the US (but a lot less expensive). While oxygen is available, I have not yet used it. Sometimes I feel the slower pace of life here mitigates my cluster headaches, even if it's only a result of feeling less frantic than I usually am when in the States.

You're right that there could be a connection between the two conditions, and that my mother's headaches might be cluster-related, at least in part. Some research indicates that the brains of grapheme-color synesthetes is different in structure than normal brains. In any case, it isn't a problematic condition (unlike the cluster condition). I like the synesthesia and it is hard for me to imagine life without it. It is constant and unchanging, and has been that way my entire life. The cluster medication I take has no effect upon it, neither diminishing nor enhancing the perceived colors.

In any case, if at some time in the future you encounter someone here who might have some form of synesthesia, I'd like to meet them. Thanks again!