Author |
Topic: OUCH members (Read 989 times) |
|
Pinkfloyd
New Board Hall of Famer
comfortably numb
  
 
Gender: 
Posts: 1406
|
 |
OUCH members
« on: Jun 29th, 2004, 2:24am » |
 Quote  Modify
|
Dear O.U.C.H. members.
Did you know the purpose of the organization was when you signed up? Did you sign up because you believed in it's purpose and it's goals, and wanted to help or did you sign up just so you could read what other people might be doing or saying?
Although I believe in their stated goals, I'm not a member, so believe me, I'm not throwing stones. I'm just looking for people that might be interested in finding something that will relieve thousands of people and their familes of the pain and suffering involved with cluster headaches.
I thought that OUCH members might be so interested, considering the stated Mission Statements and Vision Statements of your organization.
In case you missed that page when you signed on, this is what those goals consist of:
Mission Statement
<snip>
We encourage, support and participate in research to develop new and improved
therapies and practices for treating cluster headaches.
Vision Statement
<snip>
"We will strive to be a catalyst for finding a cure for cluster headaches by encouraging
and participating in research into the condition. "
Therefore, I would like to offer you all the opportunity to fulfill these statements of intent though the encouragement, support and participation in the research being conducted by Dr.'s John Halpern and Andrew Sewell of the Harvard Medical School, as coordinated by MAPS and Clusterbusters.
Several months ago, Cat (one of your members) asked for names of people that were willing to complete questionaires for an survey being conducted by NECH. I know that she had a list of a couple hundred people. Now I know Harvard Medical School is not the New England Center for Headaches, but I have heard they do have an above average reputation for research and education. In case it's a geographical question, they are also in the New England area of the USA, so I would hope they might be worthy of your consideration.
If you tried the psilocybin treatment, whether it was helpful or not, I would appreciate it if you'd take the time to complete the surveys found at:
http://www.erowid.org/plants/mushrooms/survey/mushrooms_survey_headaches .shtml
and
http://www.clusterbusters.com/phpsurveyor/index.php?sid=4
If you have been diagnosed with clusters, I would appreciate it if you would take the time to complete the survey located at:
http://www.clusterbusters.com/phpsurveyor/index.php?sid=5
Not only would I appreciate it, afterall, who am I anyway, but so would all your friends that are working hard to find a treatment that will help not only you, but your friends and relatives that may now or in the future, suffer from cluster headaches.
If you, or anyone you may know, are so inclined to offer financial support for the research being done into the use of psilocybin as an effective cluster treatment, and for any new treatments that this research may lead to, please go to the link below and make a donation to MAPS. Be sure to note in the comments section that your donation is to be used strictly for Cluster Headache Research.
http://www.maps.org/support.html
Thank's to all those that have already participated in some way and thank you in advance to all those that follow.
PF www.clusterbusters.com
"Destiny is not a matter of chance, it is a matter of choice; it is not a thing to be waited for, it is a thing to be achieved."
William Jennings Bryant
|
|
 IP Logged |
"Nothing is so firmly believed as what we least know."
"There is no passion so contagious as that of fear."
[Michel de Montaigne
www.clusterbusters.com
www.obscuredview.blogspot.com
|
|
|
don
Guest
|
Be sure to fill in ALL mandatory boxes with SOMETHING be it an (N/A) or (0).
|
|
IP Logged |
|
|
|
alleyoop
New Board Hall of Famer
Wake me up when it's all over.
Gender:
Posts: 1143
|
|
Re: OUCH members
« Reply #2 on: Jun 29th, 2004, 7:20am » |
Quote Modify
|
on Jun 29th, 2004, 2:24am, Pinkfloyd wrote:
|
|
IP Logged |
I know that the Good Lord won't put any more on you than you can stand, but sometimes I wish He weren't quite so PROUD of ME!
|
|
|
Kevin_M
CH.com Alumnus
New Board Hall of Famer
withered branches grow green again.
Gender:
Posts: 6184
|
|
Re: OUCH members
« Reply #3 on: Jun 29th, 2004, 7:59am » |
Quote Modify
|
on Jun 29th, 2004, 2:24am, Pinkfloyd wrote:| I know Harvard Medical School is not the New England Center for Headaches, but I have heard they do have an above average reputation for research and education. |
|
The cirriculum at Harvard Medical School has been recently overhauled to create what is termed a "new pathway". It emphasizes the patient's experience of illness, in many words, pain is in there interest now, not just the biology of the disease. This has brought their
interests in to synch with ours in the past few years (finally). Dr. Bruce Cohen, a professor there is the director of it's McLean Hospital, which will be involved and is one of the preeminent institutions for psychiatric care and research in the U. S. I wouldn't worry about credentials, if you're interested, definitely do it.
Kevin M
|
| « Last Edit: Jun 29th, 2004, 8:02am by Kevin_M » |
IP Logged |
|
|
|
Bob P
New Board Hall of Famer
Shut up Bob!
Gender:
Posts: 3436
|
|
Re: OUCH members
« Reply #4 on: Jun 29th, 2004, 10:17am » |
Quote Modify
|
As I read this post and Roxie's post on the Zomig nasal trial, the thought hits me; these are all trials of 'treatments'. While better treatments are a good thing, I can't help but look farther and think about a "cure" for clusters.
It strikes me that the real cure starts in the research into the cause of clusters. The work that Goadsby, Sheftel and the Italian doctors are doing. Only when a true cause is identified can a cure be found.
I've just this morning pointed this out on the OUCH business board. I would like to suggest that everyone join OUCH and encourage the organization to increase contacts with these cause/cure researchers. Offer ourselves and our organization to their research for this is where the real cure will be found. I don't think it will be found in looking at if and how long it takes Zomig to stop a cluster or what action shrooms have on the nerves that block clusters.
Not trying to take anything away from these treatment studies but I really think our time, efforts and funding would ultimately be better spent on the cure research instead of treatment research.
|
|
IP Logged |
Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
|
|
|
Pinkfloyd
New Board Hall of Famer
comfortably numb
Gender:
Posts: 1406
|
|
Re: OUCH members
« Reply #5 on: Jun 29th, 2004, 12:54pm » |
Quote Modify
|
on Jun 29th, 2004, 10:17am, Bob P wrote:| Not trying to take anything away from these treatment studies but I really think our time, efforts and funding would ultimately be better spent on the cure research instead of treatment research. |
|
Not trying to take anything away from these studies, just point people away from them???
Wouldn't want to do anything to eat away at Glaxo's profits?
Does OUCH have a quota on the number of research studies they can support?
Maybe you aren't aware of all the treatment research that Goadsby has, and is, involved in?
Maybe he understands that one way to get to a cure is to work backwards from which treatments have a positive effect on clusters, not just to dull the pain, to determine what is going on physiologically to stop the actions involved?
Before you suggest changing the name to o.CURE.c.h. I think you first need to work on the o.UNDERSTANDING.c.h.
We're standing at one end of a rainbow. There is nothing wrong with looking around for a map for a direct route to the pot of gold, I suggest we also follow the rainbow. You may find the map tomorrow. OTOH, you may never find the map.
Although taking the rainbow route may be a lengthy journey, at least we will pick up things along the way to make the journey less painful plus we know we are heading in the right direct with each step.
See you on the other side,
PF
|
|
IP Logged |
"Nothing is so firmly believed as what we least know."
"There is no passion so contagious as that of fear."
[Michel de Montaigne
www.clusterbusters.com
www.obscuredview.blogspot.com
|
|
|
Bob P
New Board Hall of Famer
Shut up Bob!
Gender:
Posts: 3436
|
|
Re: OUCH members
« Reply #6 on: Jun 29th, 2004, 1:06pm » |
Quote Modify
|
I see you're just as tempermental as usual floyd. God forbid someone suggest something that dulls the almighty shroom!
I'm expressing my thoughts on where OUCH, the world's only legitimate cluster organization, should expend it's efforts. Researching a cure instead of treatments (and I single out no treatment study in particular). As I said above, new treatments that work faster and better with fewer side effects are a good thing. I'm also not steering people away from those studies. I encourage everyone to go fill out your questionaires. Info is a good thing. But keep your eye on the target. Maybe all roads don't lead to it.
|
| « Last Edit: Jun 29th, 2004, 1:20pm by Bob P » |
IP Logged |
Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
|
|
|
BlueMeanie
Guest
|
Although I've never tried the shroom treatment. I've read posts from people who have. With the success rate at which it seams to stop a cycle, (not just stop a CH attack), I don't see why OUCH would not pursue both projects of prevention and cure.
Yes I would love to not have to see any family member or anybody have to deal with getting Clusters. I would also love to give those same people a pill of shrooms to end their cycle much more than giving them a shot of Trex just to end a CH.
Why not pursue both ends of the rainbow. It's a long way to the other side from one end. Maybe we'd end up on top with at least some gold in our pot.
|
|
IP Logged |
|
|
|
vig
CH.com Alumnus
New Board Hall of Famer
CHit Happens
Gender:
Posts: 4401
|
|
Re: OUCH members
« Reply #8 on: Jun 29th, 2004, 1:41pm » |
Quote Modify
|
BobP said:
"Not trying to take anything away from these treatment studies but I really think our time, efforts and funding would ultimately be better spent on the cure research instead of treatment research. "
Understanding why Psilocybin/Psilocin's action in stopping this pain so FULLY compared to the other medicines IS one legitimate avenue to finding a cure....
AND it provides immediate, POWERFUL relief while the hunt for the cure is on...
"But keep your eye on the target. Maybe all roads don't lead to it."
(there's the veiled dismissal, and has no better answer)
|
|
IP Logged |
never, Never, NEVER quit. -Winston Churchill
|
|
|
Pinkfloyd
New Board Hall of Famer
comfortably numb
Gender:
Posts: 1406
|
|
Re: OUCH members
« Reply #9 on: Jun 29th, 2004, 1:46pm » |
Quote Modify
|
Hey, I'm just expressing my thoughts on your thoughts.
on Jun 29th, 2004, 1:06pm, Bob P wrote:I see you're just as tempermental as usual floyd. God forbid someone suggest something that dulls the almighty shroom!
|
|
Tempermental? LOL.
This discussion is not just about shrooms. It's about research. Treatment vs. Cure
You answered question one with a yes. You didn't really address the other points. You probably forgot. I'll look for updates.
While you're at it maybe you could choose one or two of the following to answer.
Will OUCH members be too tired after the convention to support more than one research project?
Is OUCH (or you personally) in a position to decide which research project will lead to the cure the quickest? If so I'd like to see the supporting documents. I promise to share them with all the other researchers that are wasting their time looking in other corners. I'm sure they'd like to get on the right bandwagon.
Could you point me to that specific research study that is dealing only with finding a cure and is wasting no time on treatment improvements? I'd like to offer my support and make a donation.
on Jun 29th, 2004, 6:29am, Bob P wrote:(and I single out no treatment study in particular).
|
|
Guess I read your post incorrectly then, I'm sorry. Let me look again...
on Jun 29th, 2004, 6:29am, Bob P wrote: I don't think it will be found in looking at if and how long it takes Zomig to stop a cluster or what action shrooms have on the nerves that block clusters.
|
|
Ok, well I'm off to get some reading glasses...still looks the same, damn it. Probably from all that prednisone I ate growing up.
PF
|
|
IP Logged |
"Nothing is so firmly believed as what we least know."
"There is no passion so contagious as that of fear."
[Michel de Montaigne
www.clusterbusters.com
www.obscuredview.blogspot.com
|
|
|
Bob P
New Board Hall of Famer
Shut up Bob!
Gender:
Posts: 3436
|
|
Re: OUCH members
« Reply #10 on: Jun 29th, 2004, 2:10pm » |
Quote Modify
|
I can't answer any of your OUCH questions Floyd since I'm not an OUCH officer nor a BoD member nor the webmaster any longer. I'm just an OUCH member like a few thousand other clusterheads. I'm also not going to the convention so I can't speak for what happens there.
Quote:| Understanding why Psilocybin/Psilocin's action in stopping this pain so FULLY compared to the other medicines IS one legitimate avenue to finding a cure.... |
|
Prednisone also stops the pain FULLY for many.
Quote:| AND it provides immediate, POWERFUL relief while the hunt for the cure is on... |
|
For some but not for all, just like many other treatments.
Again I see an awful lot of assumpions being made. I keep hearing an 80-90% success rate. Those aren't real numbers. Maybe it's 80-90% of those that respond to the surveys but you don't really know the succes rate until you administer it to a given number of people and document the success rate in a monitored setting. Maybe 80% of the people it doesn't work for never come back to tell busters that it didn't work. A lot of conjecture involved in your numbers.
Here is another option that I just received in my e-mail 15 minutes ago:
"As many of you know, cluster headache is a very painful condition.
However, finding treatment for cluster headache can be difficult due to the
rarity of the disorder. There are often clinical trials for cluster
headache at the Jefferson Headache Center in Philadelphia, PA. If you are
interested in participating in cluster headache research, please call
215-955-2037"
I have no idea what they are studying but if you're in that neighborhood, give them a call.
It also wouldn't surprise me at all, once your study is ready to roll, that OUCH would encourage it members to participate in it just as they have the Zomig trial.
|
| « Last Edit: Jun 29th, 2004, 2:30pm by Bob P » |
IP Logged |
Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
|
|
|
vig
CH.com Alumnus
New Board Hall of Famer
CHit Happens
Gender:
Posts: 4401
|
|
Re: OUCH members
« Reply #11 on: Jun 29th, 2004, 9:59pm » |
Quote Modify
|
on Jun 29th, 2004, 2:10pm, Bob P wrote:
Prednisone also stops the pain FULLY for many.
For some but not for all, just like many other treatments.
|
|
Prednisone stops the pain, with HORRENDOUS side effects. But you already knew that.
It seems to work for MOST, not just some. I take it that it didn't work for you. And I KNOW it worked on me, better than any of the other substances I've tried.
From the top:
"but you don't really know the succes rate until you administer it to a given number of people and document the success rate in a monitored setting. "
He continues:
"Not trying to take anything away from these treatment studies but I really think our time, efforts and funding would ultimately be better spent on the cure research instead of treatment research. "
So, you want a study done, but don't want to waste any time or effort on it?
|
| « Last Edit: Jun 29th, 2004, 10:20pm by vig » |
IP Logged |
never, Never, NEVER quit. -Winston Churchill
|
|
|
forgetfulnot
Guest
|
on Jun 29th, 2004, 10:17am, Bob P wrote:As I read this post and Roxie's post on the Zomig nasal trial, the thought hits me; these are all trials of 'treatments'. While better treatments are a good thing, I can't help but look farther and think about a "cure" for clusters.
It strikes me that the real cure starts in the research into the cause of clusters. The work that Goadsby, Sheftel and the Italian doctors are doing. Only when a true cause is identified can a cure be found.
I've just this morning pointed this out on the OUCH business board. I would like to suggest that everyone join OUCH and encourage the organization to increase contacts with these cause/cure researchers. Offer ourselves and our organization to their research for this is where the real cure will be found. I don't think it will be found in looking at if and how long it takes Zomig to stop a cluster or what action shrooms have on the nerves that block clusters.
Not trying to take anything away from these treatment studies but I really think our time, efforts and funding would ultimately be better spent on the cure research instead of treatment research. |
|
Bob, it's called a shotgun. OK
Lee
|
|
IP Logged |
|
|
|
Bob P
New Board Hall of Famer
Shut up Bob!
Gender:
Posts: 3436
|
|
Re: OUCH members
« Reply #13 on: Jun 29th, 2004, 10:58pm » |
Quote Modify
|
You can twist my words any way you please. You can assign meaning to them that I obviously didn't intend.
None of this really amazes me anymore.
You guys are a constant source of amuzement. Thank you for that.
It really doesn't seem to me that it should cost $50,000 plus to give shrooms to a couple dozen sufferers in a clinical setting and determine how effective it really is. Once the effectiveness is determined the next step is to determine why it is effective and if that reason points to a cause of clusters. Ho hum. That was a though one.
|
| « Last Edit: Jun 29th, 2004, 11:03pm by Bob P » |
IP Logged |
Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
|
|
|
vig
CH.com Alumnus
New Board Hall of Famer
CHit Happens
Gender:
Posts: 4401
|
|
Re: OUCH members
« Reply #14 on: Jun 29th, 2004, 11:32pm » |
Quote Modify
|
What did you mean then?
|
|
IP Logged |
never, Never, NEVER quit. -Winston Churchill
|
|
|
forgetfulnot
Guest
|
He may be hopped up on zone, who knows.
Lee
|
|
IP Logged |
|
|
|
tommyD
New Board Hall of Famer
Anything not impossible is compulsory.
Gender:
Posts: 525
|
|
Re: OUCH members
« Reply #16 on: Jun 30th, 2004, 7:06am » |
Quote Modify
|
You have a point here, BobP.
Quote:| Again I see an awful lot of assumpions being made. I keep hearing an 80-90% success rate. Those aren't real numbers. Maybe it's 80-90% of those that respond to the surveys but you don't really know the succes rate until you administer it to a given number of people and document the success rate in a monitored setting. Maybe 80% of the people it doesn't work for never come back to tell busters that it didn't work. A lot of conjecture involved in your numbers. |
|
The 80 - 90% success result is unscientific and anecdotal. It's not based on the surveys Pink mentioned (yet), but on reports posted here and elsewhere by people who have tried it. We encouraged people to post reports whatever the results, but it is possible unsuccessful reports were never reported. But here at CH.com, I see little reluctance to post negative treatment reports on anything. It's also possible many positive reports were never reported. This is, after all, an illegal substance in most places.
But positive or negative, the anecdotal reports we counted were compiled, word for word in most cases (names changed to protect the innocent), and are now being reviwed by Drs. Halpern and Sewell and will help provide a starting point for the very trials you say are needed.
Yes, we should look for a cure, but research into treatment may help find that cure. The indole-ring hallucingen treatment may provide a clue by addressing the role of dimethyl triptamine (DMT - similar to LSD and produced naturally in the brain).
Quote:| It really doesn't seem to me that it should cost $50,000 plus to give shrooms to a couple dozen sufferers in a clinical setting and determine how effective it really is. |
|
You're right again, BobP! It actually will cost $300,000 to $500,000 to conduct a small clinical trial. A clinical trial of ANY treatment will cost that much if not more. The more subjects participate, the more it will cost, and the more generalizable the results. It's about as much as it would cost to keep those couple dozen sufferers in Imitrex for a couple years.... How much is being pain-free worth to us?
But before the hallucinogen connection can be investigated for clues to a cure, it must be shown scientifically it works as a treatment, just as the anecdotal reports can provide a startng point for the clinical trials.
A dual track is needed. Both treatment and cause must be pursued. We non-scientist Clusterheads can help investigate treatment by participating in surveys and clinical trials. But very few of us know enough neurology to help with finding cause, except perhaps financially. Basic research isn't cheap, either.
Hey, the ClusterBusters could easily say, "Damn, raising half a mil is just too difficult. Let's just tell people to try it. proof or not. So what if only a handful of clusterheads find relief instead of thousands. WE got OURS."
Quote:| You guys are a constant source of amuzement. Thank you for that. |
|
No, thank YOU! I like to make people laugh.
By the way, shrooms can make you giggle.
-tommyD
|
|
IP Logged |
www.clusterbusters.com
|
|
|
Bob P
New Board Hall of Famer
Shut up Bob!
Gender:
Posts: 3436
|
|
Re: OUCH members
« Reply #17 on: Jun 30th, 2004, 7:32am » |
Quote Modify
|
Thanks for the voice of reason Tommy. You're a stand out in the crowd.
Good luck to you.
Quote:
I'll try to clarify what I'm saying. Using the OUCH Mission/Vision statements as justification, floyd calls on the OUCH members to support the shroom study by filling out the surveys and giving money if they want. That's fine. It is what OUCH's mission is. To identfy and encourage support of research into new and better treatments for clusters.
OUCH's vision statement goes a step farther and speaks of a cure, not a treatment. My post was to remind the OUCH members that treatment and cure are two different things. One may lead to the other but still two different things. I don't want the OUCH members to get tunnel vision and start thinking that treatment studies fulfill the vision statement's quest for a cure. There is other research going on that is looking not at how to treat a cluster to stop the pain but what is causing the pain in the first place. Goadsby and his hypothalamus research. Many others researching hormone levels, neurotranmitters, etc.
In a sentance, I am reminding the OUCH members to not get too focused on one single study but to keep an eye on the end of that rainbow, as floyd calls it, which is the cause of clusters which will lead to the cure.
|
| « Last Edit: Jun 30th, 2004, 9:57am by Bob P » |
IP Logged |
Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
|
|
|
maria9
New Board Veteran
Posts: 145
|
|
Re: OUCH members
« Reply #18 on: Jul 1st, 2004, 11:05pm » |
Quote Modify
|
Hi Bob P,
Remember back to the days when you were Pres of OUCH and asking us as a homework assignment to thank those researchers that had included CH'ers in their research? Remember you soliciting other ch'ers to send TY's to the researchers. Certainly I can understand how CH only affects 1% of the population and your reservations about who you could ultimately impact. Remember about trying to make an impact on those that were seriously concerned about cluster headaches? Just curious here, BobP do you really think you will find the elusive cure here, or will you just go for the abortive/preventative?
Oh, and BTW how is your golf game?
Marsha 
|
|
IP Logged |
"All you have to do is the best you can. A high wave comes, a crashing wave comes, a gentle swell follows. Whatever comes, stay in your boat. And enjoy the ride. And row." Peggy Noonan
|
|
|
Bob P
New Board Hall of Famer
Shut up Bob!
Gender:
Posts: 3436
|
|
Re: OUCH members
« Reply #19 on: Jul 2nd, 2004, 10:30am » |
Quote Modify
|
Hi Marsha. I'm not quite sure I understand what you are asking. I do recall asking everyone to contact the doctors who issued research papers and thank them. I felt it was a good way to encourage further research and also to get OUCH's name in front of them. Hoping they would use us in further research. I recall you contacting a doctor from South America and him contacting OUCH and expressing an interest in the surveys on the site.
Not knowing what all of the test protocol will be for the Harvard study, I can't say if it will be a study of the effectivness of the treatment, the mechanism by shich it does or doesn't work or if this will point to a cause for clusters.
Am I going to put all of my hopes on that one study, no.
I'll continue to read the medical sites and watch for promising research and then do what I can to help that research. It could be many different studies going on at once.
What will I do personally to treat my next cluster? Shrooms, cafergot & O2, Elavil in that order.
My golf game sucks. Played 2 weeks ago for the first time in about a year. 45 on the front, 55 on the back. I hate it when I stop swinging at the ball and start trying to steer it!
|
|
IP Logged |
Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
|
|
|
maria9
New Board Veteran
Posts: 145
|
|
Re: OUCH members
« Reply #20 on: Jul 2nd, 2004, 12:39pm » |
Quote Modify
|
Thanks for your reply BobP,
Sorry I wasn't very clear in my last post.
While I can see your point of not wanting "to put all of your eggs in one basket" with regards to treatment modalities for cluster headaches, I was confused by your response that OUCH should be supporting studies that are actively seeking a cure for cluster headaches rather than those looking at potential treatment, i.e. Zomig, shrooms.
Since cluster headaches are so poorly understood and so little research has been done, I would think you would be supportive and welcoming of any research into cluster headaches, whether you agreed with it or not.
Marsha
|
|
IP Logged |
"All you have to do is the best you can. A high wave comes, a crashing wave comes, a gentle swell follows. Whatever comes, stay in your boat. And enjoy the ride. And row." Peggy Noonan
|
|
|
Bob P
New Board Hall of Famer
Shut up Bob!
Gender:
Posts: 3436
|
|
Re: OUCH members
« Reply #21 on: Jul 2nd, 2004, 2:05pm » |
Quote Modify
|
I am supportive of the Harvard study.
I am not supportive of the attitude I percieve from some of the busters that if you don't give them everything they want in the name of this study, then you're an idiot and deserve to rot in your prescription medications and to suffer all the pain of the clusters.
The Zomig study will only determine if Zomig nasal spray works on clusters and how well. This is good because it will give another medication that is specifically identified for clusters. This may help in getting insurance to cover more of it. It won't do anything to help find a cause or cure for clusters.
Again, I don't know what is involved in the Harvard study. Will it just determine if shrooms work to stop clusters like the Zomig study? Will it go farther and determine how it stops clusters? Will that "how" point to what really causes clusters or will it say that it blocks the action of some neurotransmitter which hasn't really led to much cause/cure progess (at least not in the case of the triptans)? Just a lot of stuff I don't know about this study yet.
Sometimes I just want to bust into one of the major world neuro/headache symposiums and scream at the top of my lungs, "Here I am, I have clusters, I'm willing to do anything you want me to in order to FIX THE DAMN THINGS!"
|
| « Last Edit: Jul 2nd, 2004, 5:46pm by Bob P » |
IP Logged |
Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
|
|
|
maria9
New Board Veteran
Posts: 145
|
|
Re: OUCH members
« Reply #22 on: Jul 2nd, 2004, 9:16pm » |
Quote Modify
|
Bob P,
Thanks for your clarification regarding supporting the on-going studies about cluster headaches.
I can't answer you about if the study will be looking at which neuroreceptors are particularly involved in cluster headaches. But my hope is the researchers at Harvard with help from the researchers at MAPS will be looking into this with some detail and will be able to provide us with some answers or at least some direction where we need to go in the future.
Maybe Pinkfloyd has some more information on this topic.
I am sorry that you feel so negatively about clusterbusters, my opinion, I know in my heart that you both want the best (or find a cure ) for all of us. Having just gone through a particularly ugly cycle, I feel for all of you going through this now, I just hope that a cure is on the horizon and that possibly it could start with the research at Harvard.
The cup is half full,
Marsha
|
|
IP Logged |
"All you have to do is the best you can. A high wave comes, a crashing wave comes, a gentle swell follows. Whatever comes, stay in your boat. And enjoy the ride. And row." Peggy Noonan
|
|
|
Bob P
New Board Hall of Famer
Shut up Bob!
Gender:
Posts: 3436
|
|
Re: OUCH members
« Reply #23 on: Jul 3rd, 2004, 9:46am » |
Quote Modify
|
One more small clarification. I don't feel negatively about the busters or the shrooms as a whole. Just the attitude I've gotten from a few of the busters.
|
|
IP Logged |
Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
|
|
|
Mac_Muz
New Board Old Timer
new hampster "eat seeds or die"
Gender:
Posts: 299
|
|
Re: OUCH members
« Reply #24 on: Jul 3rd, 2004, 10:00am » |
Quote Modify
|
Pinkfloyd, I did all that several months back.... You did reply to me in e-mail saying you had been away, and would contact me in a time when you had time..
I am at this time either waiting or forgotten???
I am new to CH's, and at that time had just begun with all there is to know, which in my case is still on going with the learning curve...
I had not and still have not tried many things which may or not work, but am willing to go to Boston, and be used as a test....
I am in NH USA..
You replied to crowmckay@ xxxxxxxxx if that rings a bell.
I prefer to not have that addey listed on line..
If you wish reply to mac_muz15@hotmail.com as that is me also..
Perhaps I should re do the survey? But if I do then I would be doing that 2 times and that in it self might cause confusions...???
I was in a Ch pattern at that time, and since it was my forst I didn't know if I was chronic.... I am not , and so at this time I am as free as a bird...
My best guess is Summer /Fall might be my next bout, and if not Winter/Spring.... Or maybe in my own way I drove off the demon... probably not....
If you reply here, and or e-mail me I will try to do what ever is asked... Mac
|
|
IP Logged |
When all else fails read the instructions.
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
Remove
test rss