Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        New Message Board Archives >> Jul-Sep 2003 >> THE CURE !!
        
(Message started by: UnsolvedEquation on Sep 14^th, 2003, 2:37am)

Title: THE CURE !!
Post by UnsolvedEquation on Sep 14^th, 2003, 2:37am

Will there ever be one ? I'm just looking to see what you all think. Do you think we'll see a 'cure' in our lifetime? Maybe a pill we can take everyday to keep the beast away ?

Title: Re: THE CURE !!
Post by ClusterChuck on Sep 14^th, 2003, 2:49am

We can always hope and pray, but at my age, and my condition, I don't expect to see it.

Chuck

Title: Re: THE CURE !!
Post by catlind on Sep 14^th, 2003, 8:05am

That will depend a large deal on how proactive the sufferers choose to be.

One way you can work towards that cure is to be sure to fill out the quality of life survey when it comes out so that we can get the impact data needed to further research.

Another way is to examine ALL avenues of treatment, even those that don't seem like they are logical (to include shrooms and further research on it, and even bleu cheese and vinegar)

Remember no one cares about your health more than you, so you are the one who will have to work towards your cure :)

Cat

Title: Re: THE CURE !!
Post by Elaine on Sep 14^th, 2003, 8:17am

Yes! There will be a cure. I won't give up looking. I have gone from chronic to eposidic. I was chronic for over 20 long years. I now have as much as 8 month pain free time at a time. I am looking every day for answers.

We finally have doctors intrested! We have more members here and On the O.U.C.H. website. Yea I see painfree days ahead for clusterheads! I think it will take work on our part but it will happen.

Title: Re: THE CURE !!
Post by Prense on Sep 14^th, 2003, 10:15am

I sure as hell hope so! ;D

Title: Re: THE CURE !!
Post by tommyD on Sep 14^th, 2003, 10:41am

Just to be a pain-in-the-ass nitpicker, "Maybe a pill we can take everyday to keep the beast away ?" would not be a cure, but merely a treatment.

A cure would be a treatment that, administered once, would eliminate the disease permanently.

And to be a pain-in-the-ass pessimist, a true cure for clusters may be a long way off, since the problem seems to involve a deformed hypothalamus.

But there are some very effective treatments, and the promise of even more effective treatments. What would you think of a medication that, by taking a couple doses a year, or perhaps several doses over a couple of months, can keep the beast away for months or years?

We have that already. It's illegal and some shouldn't use it, but it works damn good. See www.clusterbusters.com.

-tommyD

Title: Re: THE CURE !!
Post by tsayswhy on Sep 14^th, 2003, 10:56pm

A cure: like everything else it takes time. My neuro told me that they use white rats [sorry for any animal lovers] to find a cure for alot of different medical problems but for clusters they need real people and it is a slow process because how many of us will try a new drug? not sure of side affects ect. but finding a cure well i hope because thats all we got for now.

Title: Re: THE CURE !!
Post by CathiP on Sep 14^th, 2003, 11:14pm

psssst......hey, guys..........over here........how bout some really POSITIVE thinkin to go along with that survey Cat's telling you about........and continuing to row.....Can't hurt.......Might help.........
There is so much going on now in the world of Clusters...now is the time to keep the heat on.....it IS worth it!
Truly hoping it is soon....and complete......
Cathi

Title: Re: THE CURE !!
Post by Mark C on Sep 14^th, 2003, 11:37pm

YES!...and soon!

Title: Re: THE CURE !!
Post by Charlie on Sep 15^th, 2003, 12:23am

A cure? Probably.

Something to make life tolerable while entertaining the beast? Very soon.

Charlie

Title: Re: THE CURE !!
Post by zanychef on Sep 15^th, 2003, 2:55am

there will be one day it just takes all of us to find it

Title: Re: THE CURE !!
Post by Turts on Sep 15^th, 2003, 7:53am

Id have to agree with tommyd. A cure would be a one off operation or med treatment, that would be an intense "chemo"like therapy, that would kill the beast within, and any of his little pesky demons that help stoke the fire. I think there is a heap of research and neuro understanding to occur first due to the risk involved with anything major.
HOWEVER, a viable med that will eliminate a cycle when "shes comin down the mountain" I can see and see in the near future.

Agreed that OUCH an CH are catalyst to make this happen.

P.s. I have plenty of mice to donate in the name of research ( mouse trap attached)

Title: Re: THE CURE !!
Post by jminmilwaukee on Sep 15^th, 2003, 8:16am

In the loosest of terms, I have found my cure. No it is not a fix all be all one time only deal but it made my last cycle feel more like a kitten than a pack of very angry very hingry lions.

I am talking bout shrooms of course. Normally I get hit 6 to 8 times daily with the typical wake up session. When I dosed last cycle I got hit hard perhaps every 7 to 10 days, still got shadows but slept through most nights.

The true test for me will be next fall. I will be preventative dosing prior to the cycle. There is some evidence that this will stop the cycle completly before it even starts.

Closest thing I have ever seen to a cure.

My 2c

jmin

Title: Re: THE CURE !!
Post by Turts on Sep 15^th, 2003, 8:27am

Pardonmy ignorance---- but what are shrooms???----are they what i think they are??? a member of the fungus family often enjoyed in salads etc,but these have been grown by Frankenfurter in his lab??

Title: Re: THE CURE !!
Post by Mastifflvr28 on Sep 15^th, 2003, 8:36am

Turts,
Everything you ever wanted to know bout fungus.

http://www.clusterbusters.com

And like Jim, made my cycle turn into a purring kitten too :)

Mast

Title: Re: THE CURE !!
Post by jminmilwaukee on Sep 15^th, 2003, 8:38am

If you want to know more go to clusterbusters.com.

Please keep in mind they are not for everyone and they are not legal in many places.

But, they do work and can be had without breaking the law if you have the means or are willing to go to them.

jmin

Title: Re: THE CURE !!
Post by JDH on Sep 15^th, 2003, 9:17am

Is this the cure? Well I'm from Missouri, the Show Me State and hopefully I'll be shown in the very near future.
I have read so many good things about the 'shroom treatment over the last 6 months that I've decided to give it a try and find out for myself.
I like the fact that it's all natural 'cause I HATE taking all those meds when I'm in a cycle...who knows what that's doing to us over time.
There's nothing I'd rather do than say goodbye to the beast once and for all (or at least meet his meek little baby brother) and this sounds like it might just be the answer.
here's to all who have gone before us,

Jim

Title: Re: THE CURE !!
Post by hopefull on Sep 15^th, 2003, 9:25am

I think one day they will be a thing of the past, but not in my life time....until someone "important" gets one...ie movie star, politician or his family.....no one really cares...it's like the mentally disabled, until JFK came along with a sister in this condition no one would even talk about it....you were just sent away....out of sight out of mind ...there fore not having to deal with such unpleasantries...

Sweeping things under the rug and pretending they don't exist is a great american past time...till it bites you on the a$$....

Reality check!

Title: Re: THE CURE !!
Post by catlind on Sep 15^th, 2003, 9:34am

Which is exactly why this survey is so important Hopefull. With the impact data, they will have concrete evidence of the impact and debilitating nature of this affliction.

With that data, they can then move forward to research and awareness.

This data will also help with deriving a medication that IS legal from the friendly fungus.

Research takes time and money, and it won't go anywhere if they don't have the data to back up the NEED for the research.

Sorry folks, but my soap box isn't going anywhere for awhile.

Cat

Title: Re: THE CURE !!
Post by UnsolvedEquation on Sep 15^th, 2003, 3:26pm

Shrooms are illegal here in Indiana...and most other states I think. But if I could get my hands on them...i'd eat em' like I was at a buffet ! I can't get all that neccesary equipment to grow them ... besides ... I don't have a green thumb ! :-[ The only fungus I can grow is on the bread I didn't eat for 2 weeks ... LOL

Title: Re: THE CURE !!
Post by vig on Sep 15^th, 2003, 4:11pm

Maybe a pill we can take everyday to keep the beast away ?

I'm with Tommy on this one...
I do not want a pill I have to take everyday.
That is a victory for the Pharmaceutical companies, not us.

Title: Re: THE CURE !!
Post by eyes_afire on Sep 15^th, 2003, 6:58pm

Quote:

I can't get all that neccesary equipment to grow them ... besides ... I don't have a green thumb !

Never fear, most of the gardening materials are common household items or easily obtainable at your local garden shop. Easy as hell to grow and they grow like fucken weeds. Green thumb is not required for those that stain blue. It's really very easy.

--- Steve

Title: Re: THE CURE !!
Post by Hooter on Sep 15^th, 2003, 9:53pm

The 'cure' (rather than just an effective treatment of the symptoms) will probably come when they identify the gene that they believe causes this condition.

According to the Professor leading the CH genetics research being conducted over here, when they know which gene it is we might be lucky that the human genome project has already identified what that particular gene is supposed to be doing when it functions correctly. That could be in our lifetime. If they identify the gene but it is one of the many thousands of genes where they haven't yet identified its function, I think we can be pessimistic about a true 'cure' in this generation.

Wendy

Title: Re: THE CURE !!
Post by jminmilwaukee on Sep 16^th, 2003, 7:44am

In the meantime, I will continue using my non pharmacutical, non surgical, non side affect (long term), non life threatening, highly successfull cheap and natural "treatment".

OK, not that cheap when you include the airfare and lodging but a hell of an excuse to grab a vacation!

No, not a cure but I for one refuse to sit back and wait for someone to help me. I prefer to help myself as it is me with the affliction and I am truelly the onlyone with the drive to help myself.

Yes, we've been over and over the shroom thing but hey, might have saved my life.

Amen