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Cluster Headache Help and Support >> Cluster Headache Specific >> cluster buster masks
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Message started by rich72 on Dec 4th, 2009 at 10:19am

Title: cluster buster masks
Post by rich72 on Dec 4th, 2009 at 10:19am
hi all these big cluster uster masks do they work?and if so where would i get one from?bearing in mind i live in the u.k :)

Title: Re: cluster buster masks
Post by Jeannie on Dec 4th, 2009 at 10:45am
Hi Rich!

If you look to the left of your screen there is a yellow button labeled CH.com store.  If you click on it you'll find that they sell the Optimask.  While I have not used it myself, as I do not have 02...yet, ( getting it Wed! ) I have heard that it works very well.  I'm not sure if it is available in the UK.  I'm sure someone will be along to help you further.

To add to Rich's question.  Is there that big a difference in the two mask that are available?  One is with the Ambu mask and one is without.

Thanks,

Jeannie

Title: Re: cluster buster masks
Post by rich72 on Dec 4th, 2009 at 11:18am
how long have you had ch for mate?

Title: Re: cluster buster masks
Post by LeLimey on Dec 4th, 2009 at 11:21am
Both are excellent and I can't recommend them enough. The ambu mask is more durable but both are absolutely efficient.

Rich, order it from ch.com. You can't order them in England but you can get one from here without difficulty, it's how I get mine.

Both I and my son Jasper use optimasks. I like the ambumask too (have both) but the optimask is a little less heavy duty. I actually prefer the optimask as I really don't like things close to my face at all and the optimask seems less intrusive to me but that's all, my personal preference. Jasper way prefer's the ambumask and the advantage of those is you can inflate the air cushion to the firmness you want so it's unique to you.

Both are excellent - it definitely takes the chit out of CH for me as I can abort in 5- minutes using one at 15LPM. You get a 100% seal so are not breathing any air - and THAT is what makes them so special.

I love my optimask - can you tell?!

Helen

Title: Re: cluster buster masks
Post by Jeannie on Dec 4th, 2009 at 11:27am

rich72 wrote on Dec 4th, 2009 at 11:18am:
how long have you had ch for mate?

Since I was 10.  I'm 39 now. 

Title: Re: cluster buster masks
Post by rich72 on Dec 4th, 2009 at 11:27am
yes Helen i can see you a BIG fan do you have shares in the company?.lol ;D

Title: Re: cluster buster masks
Post by rich72 on Dec 4th, 2009 at 11:30am
flippen heck Jeanne since you were 10?ive heard of few people getting it when their young but not many proff goadsby says its generaally when your in your 30's until mid 60's :)

Title: Re: cluster buster masks
Post by LeLimey on Dec 4th, 2009 at 11:35am
Rich, Prof Goadsby diagnosed my son with CH.. Jasper was just three years old at the time. He's only just turned eight now.

Title: Re: cluster buster masks
Post by rich72 on Dec 4th, 2009 at 11:41am
blimey i remember proff goadsby telling me he had a 3year ch sufferer matbe that was your son jasper he was on about

Title: Re: cluster buster masks
Post by Callico on Dec 4th, 2009 at 11:42am
I use the o2ptimask that I got from CH.com.  i had previously used a regular non-rebreather mask that did not do the job nearly as well as the new one does.  I swear by it!  BTW, it was developed for us by Linde, based on the needs expressed to them, so it is a bit more effective than the old style.

Jerry

Title: Re: cluster buster masks
Post by Jeannie on Dec 4th, 2009 at 11:48am
I had my first HA after a field day at school when I was in the third grade.  They were very unpredictable.  Once I hit about thirteen years old they became a little more scheduled.  Mostly in the Spring and sometimes in the Fall with random hits throughout the year. 

I was misdiagnosed as having Migraines till I was in my twenties.  My mom always told me that I just had a low tolerance for pain.   She got migraines and didn't act the way I did.  She would go lie down... I begged and cried for help.   I was so thankful when I realized that what we had was different.  I wasn't just a wimp.

Maybe I'll outgrow them soon!

BTW, I have had breaks.   They went away for a few years in my very early twenties.

Jeannie

Title: Re: cluster buster masks
Post by Jeannie on Dec 4th, 2009 at 11:51am
Helen,

I pray that Jasper outgrows them  very, very soon.

Jeannie

Title: Re: cluster buster masks
Post by LeLimey on Dec 4th, 2009 at 12:00pm

rich72 wrote on Dec 4th, 2009 at 11:41am:
blimey i remember proff goadsby telling me he had a 3year ch sufferer matbe that was your son jasper he was on about


It would have been. They are great friends! Peter sits on the floor with Jasper playing with lego - he's pretty damn awesome isn't he?! (Mind you, he doesn't play lego with me and he KNOWS I like it too!)

Title: Re: cluster buster masks
Post by rich72 on Dec 4th, 2009 at 12:04pm
yeah the proff is an awsome guy and he always makes you laugh :)

Title: Re: cluster buster masks
Post by rich72 on Dec 4th, 2009 at 12:06pm
have you had ant gon blocks jeanne?and if so did they work?i had my 1st billteral gon back in feb march time wow talk about doubly effective it got me out of pain till october this year! :)

Title: Re: cluster buster masks
Post by Jeannie on Dec 4th, 2009 at 1:37pm
It has been a long time since I've been to a specialist about my CH.  I have, until recently, been able to manage my HA's fairly well by starting my prevents before a cycle starts. ( I'm episodic )  I let this cycle get started and am now having a hard time shaking it.   I have started using seeds to try and bust this cycle.  In doing so I am unable to use Imitrex to abort a HA.   I will be seeing a HA specialist next week to see about getting 02. 

So, to answer your question, I have not had any blocks of any kind.   Are you going to try that route again?

Jeannie

Title: Re: cluster buster masks
Post by rich72 on Dec 4th, 2009 at 4:58pm
are yes it definitatly works for me and many other patients it sounds awfuill a needle going in to your brain area but it dont hurt in fact its rather nice cos you know your going to be pain free for anything from worst case 2weeks to best case my billteral gon my 1st billteral gon block renered me pain free from march tilll october this year!suffering now though got them back bad style

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