Hello everyone.

I remember a thread about this some time ago and went trying to find it but couldn't. So sorry for the redundancy.

Are there any celebrities, actors, authors, people of note that suffer from cluster headache?

I remember one my college professors saying how the poety Robert Browning suffered terribly headaches. As an English major at the time struggling with my first ever cycle it was kind of inspiring to hear that other people not only shared my pain but were capable of doing great things despite / amongst their pain. (After further research I found that Browning's headaches were likely not cluster headache but something related to sinus headaches. Oh well.)

So here I am 2 weeks into this season's cycle looking for inspiration from others - not only from you all on this message board (THANK YOU!! YOU ARE WONDERFUL!) but from those people who are no different than us with the exception their paychecks and a more frequent appearance in blogs, gossip, tabloids, and the news.

Daniel Radcliffe, the actor most famous for playing Harry Potter, has CH.

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Then there's DJ.

Quote:

"Suddenly a huge phantom bird sank three talons of its angry claws deeply into my head and face and tried to lift me. No warnings, no preliminary signs. Just wham! A massive, killing pain came over my right eye. I clutched my head, stumbled out to the broad lawns and over the hedges to the deserted tennis courts and then, there in the dark, I moaned, I panted. Ballooned my cheeks, blew out short bursts of air, licked my hot lips, wiped tears that poured out of my right eye, and clawed at my head trying to uproot the fiendish talons from their iron grip. One racking hour later the talons let go. The paroxysm eased as suddenly as it had convulsed. Euphoria set in. It's gone! Whopping headache, but it's gone!..." Frank Capra, The Name Above the Title (New York: Macmillan, 1971)

This will sound silly because I can't remember who it was - either Napoleon or Wellington. I read somewhere ( a very, very long time ago ) that he (whichever) suffered from "extremely acute facial neuralgia".  Sounds like it could have been CH but they didn't know it then. They barely know it now !

I have tried to contact Mr Radcliffe a couple different times. Through his agency and online.
The agency asked me not to mail,send or contact him again. Funny. I sent it once. Offered online help not only from me but here, facebook etc.
The agency knows what this disease is and how it could really hurt his career. So I left it at that. Whether it reached Mr Radcliffe or not who knows. Personally I am not a fan of him, his movies so I had zero intrest in an autograph etc.
I have also heard an ex NFL player left the NFL for CH. I have no idea who, as I do not follow sports unless there is 4 wheels and a monster engine.
When Danielle was dianosed it made headlines for 8 hours and then brushed away. Its my understanding he is episodic not chronic. I found one interview online where he mentions it as excuriating pain. And that was about it.

When I first heard that a Hollywood star had it I thought how great this is for us. Sh*tty for him but we needed a face to the disease...If you mention Michael J Fox and being sick... I doubt there isnt a person on the planet that doesnt correlate Mike Fox to Parkinsons so this was great news I thought and then nothing. No mention of it since...because I think once his agent and publicist found out what CH is...they thought oh crap this will destroy his career...so its been hussh hush since...
thats my 2 cents and knowledge.

Until then myself and many others are being the best advocates of the disease we can by spreading awareness daily. I am personally only famous in the CH community. Some hate me...some dont.

What is more important to most of us with CH, is it a celebrity or someone living a normal life who still manages to work, be part of their family, interact with friends and doing all the usual stuff we all do?

I know that when I first started with CH, especially before I had a diagnosis and effective medication being pretty much unable to function well at all it was great to see that other people with CH were able to go about normal lives, getting control of their CH with medication, etc.

Not that any one of us, ever, would wish CH upon another person, regardless how much it may help our cause.

As CHeads we must respect every sufferer's right to fight this monster their own way, whether they are famous or not.

I blame no-one for trying to keep this dread disease quiet and personal, as so many of us have done for years.

A bit of privacy never went astray.

Only regret I ever had was not going on disability when first diagnosed because it screwed my income for the rest of my life. If I would have claimed sick when I was working Id be getting sick pay plus canada pension disability and living off $2000 a month instead of $700.

On the note of privacy. I agree, to each their own. For me
I lost my vanity years ago. I am a car guy and had an attack at a car show in front of 500 people staring and watching. Not a single person asked if I was ok or needed help. They are just watched.
Since I have numerous YouTube videos on CH and attacks I don't care about privacy anymore. After that particular day and made one of my videos public. The very first attack video I made was soley made for 5/6 people. Now has almost 1/4 million views. I get thanked daily for people using my video to show others because they don't want to show themselves. If I can be of help great. Glad I could.

Maybe one day Mr Radcliffe will address it more.
Lisa Kudrow who played Phoebe on Friends studied Cluster Headaches and did her thesis on it. Her dad suffers and her dad is a neurologist as well as her brother who specialises in treating CH.
6 months ago a Canadian George Strombolopolous did and interview on CNN with her to discuss her pre acting career and it was my understanding she was going to talk about CH. The episode never got aired because of sports and was never re aired. There is a 28 sec clip on the interview online but thats it. I really wish it would be re aired one day.
I have also written to Lisa and never heard back.

Clusterheache survivor.  The very best advocates we have going for us right now is clusterbusters and Bob Wold, John Bebee, Cindy and all the rest who just went to DC and did a headache on the Hill to plead our case for more research.  THEY are the REAL hero's for us.

I couldn't agree more. I tell them that all the time when I talk to them....They know how much I respect and appreciate every one of them. If I was American Id be beside them.

It would determinately be lovely to get more attention paid to CH. Not personally, I'm like a lot of us and I don't like to talk about it. It's a pain I'm not comfortable sharing with the world, so I can respect and understand why people would not come forward.

But more attention may mean more research and perhaps, who know, a cure!

Saw a story on it yesterday. Not much of it will be news to us but it was nice to see a doctor disappointed in the amount of attention our pain is getting from the rest of the medical community.

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