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2018 Clusterbusters Patient Conference Denver


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Please ask questions here.  I will try to answer them in a more timely manner than last year.  I'll have help this year as well.  You can also message me on Facebook (eileenbunny) or email at conferen

Greetings... Personally I've never had altitude trigger an attack but I know that some have. Where I live is about 1000 ft....where I snow ski is an hour and 45 minute drive and the elevation is

You are in for the experience of a lifetime FunTimes!  This will be my 4th conference....at my 1st in Portland (2010) there was around 35 of us....Las Vegas (2012), around 100....Austin (2016), well o

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I have a few pics on my phone but since I’m on my iPad right now I don’t know how to share.  This was my first actual Clusterbuster conference.  I had gone to a cluster headache conference 12 years ago in Dallas.

 It was eye opening to my husband and I just loved meeting and making some true new friends.  My husband started collecting contact info. On several cluster heads that live kind of close to us .  We’ll be trying to have some get togethers in the next few months.  I really was hoping to meet Batch there.......but sadly you weren’t there Batch.  I know how to use O2 because of you and of course I am doing vit d regemin.  

My husband and I are in Estes Park, Colorado planning on doing a little hiking but mostly resting for a week.  The conference was great but exhausting......in a good way.  

Eileen Brewer probably has a bunch of pics..

 

love you cluster peeps!

 

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I did not take many pics.  This was my first conference, it won't be my last.  Besides getting to meet and hang out with lots of very nice people, I came home armed with a lot of information.  Literally from the moment I arrived until the time I left I was busy gathering information, sharing stories, and fellowshipping with a great group of people.

Everyone was helpful, and I came away months worth of information to process.  I had never met another cluster headache sufferer before, so the conference was especially eye-opening for me.  Racer1_NC taught me how to use oxygen, which I was able to put into practice the next day.  I had never properly used oxygen before, and it makes a world of difference.  Thank you very much for your help

Before I went to the conference I had read that this condition had altered people's lives.  I know it has changed mine.  But getting to talk to people who understand what you are going through is absolutely priceless.  Being able to relate to complete strangers in ways that I can't with my closest family members is an odd feeling, yet was completely exhilarating.  I ate every meal as fast as I could, sometimes rudely talking with my mouth full.  I stayed up way later than I normally would, talking and hanging out with people I had never met. 

The presentations were very informative, and I came home with a lot of "action items."  For example: find a new neuro that will actually prescribe oxygen, because it is the best abortive treatment I have found.  I have a lot of new things to try, and I am emboldened by the experiences others shared with me.  As it turns out, I'm not so weird after all, and that is empowering.

Also, I saw a lot of people drinking alcohol, which is a big trigger for me.  As it turns out, it is for a lot of people, but they are beating the beast and can enjoy there lives.  Next year, I want that to be me.

 

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On ‎9‎/‎20‎/‎2018 at 6:02 PM, CHChris said:

Racer1_NC taught me how to use oxygen, which I was able to put into practice the next day.  I had never properly used oxygen before,

CHChris, can you say anything about what you learned from Racer's presentation that helped so much?  He's great, and always full of great advice.

On ‎9‎/‎20‎/‎2018 at 6:02 PM, CHChris said:

find a new neuro that will actually prescribe oxygen, because it is the best abortive treatment I have found.

I assume you have heard that many people use welding O2 as the basis for their systems.  That's an option worth exploring if you can't get a prescription for medical O2.

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On 9/16/2018 at 11:06 PM, godsjoy777 said:

I have a few pics on my phone but since I’m on my iPad right now I don’t know how to share.  This was my first actual Clusterbuster conference.  I had gone to a cluster headache conference 12 years ago in Dallas.

 It was eye opening to my husband and I just loved meeting and making some true new friends.  My husband started collecting contact info. On several cluster heads that live kind of close to us .  We’ll be trying to have some get togethers in the next few months.  I really was hoping to meet Batch there.......but sadly you weren’t there Batch.  I know how to use O2 because of you and of course I am doing vit d regemin.  

My husband and I are in Estes Park, Colorado planning on doing a little hiking but mostly resting for a week.  The conference was great but exhausting......in a good way.  

Eileen Brewer probably has a bunch of pics..

 

love you cluster peeps!

 

It was nice meeting you too! Enjoy hiking!

 

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This is a bit silly coming from someone who has never even been at a conference but have you though to have a "media person" who would take pictures and post them here maybe with a short summary being same person every year ? Maybe someone not having clusters just concentrating on documenting and reporting. Just an idea !

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  • 2 months later...

ooooh! I hope another Portland Oregon one soon!

Maybe I'll just hold one myself at my home, pass out Fadiman's book, and print out Mr. Wold's endless helpful info online....Hmm..  I can and paste flyers around town "Calling all migraineurs and cluster people: special tea & "brownies" to be served.

 

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