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Topic: found cures? (Read 965 times) |
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john123
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Is there anyone on this board who found a way to completely stop getting CH's for themselves?
I would be very interested in hearing about this.
Thanks
John
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t_h_b
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primary chronic since 1999
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Re: found cures?
« Reply #1 on: Mar 17th, 2004, 7:24pm » |
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Nothing works 100% for anyone that I've heard of but 0.5mg of melatonin at bedtime, 480mg of verapamil SR (in two 240mg doses 12 hours apart) plus 400mg of magnesium (just for the heck of it) works 99% for me. (chronic)
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| « Last Edit: Mar 17th, 2004, 7:24pm by t_h_b » |
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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jonny
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Not since ive been here and thats close to five years.
Are you going to tell us you have?....
.....................................jonny
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t_h_b
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primary chronic since 1999
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Re: found cures?
« Reply #3 on: Mar 17th, 2004, 7:26pm » |
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Jonny, are you thinking what I think you're thinking?
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| « Last Edit: Mar 17th, 2004, 7:27pm by t_h_b » |
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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jonny
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Just asking, Dude...thats all
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t_h_b
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primary chronic since 1999
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Re: found cures?
« Reply #5 on: Mar 17th, 2004, 7:29pm » |
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I thought so!
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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john123
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'are you thinking what I am thinking?' i am thinking I don't like the suggestion in those posts.
forget this
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jonny
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As far as I know (Generic) John123, none has found "Cures"
Care to explain what you mean?
.........................jonny
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john123
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I get it, you think I am selling something. I am not. And my post was geniune curiosity of what has happened since I last posted here three years ago when I had my last ch episode. Right now I am not feeling very patient so I will talk to you some other time.
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Virginia
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Re: found cures?
« Reply #9 on: Mar 17th, 2004, 7:42pm » |
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Don't mind Jonny....he's very suspicious.
I would say the answer is "NO". Although Charlie has not had any in 14 years.
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The Clusterhead formerly known as 9erfan.
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t_h_b
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primary chronic since 1999
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Re: found cures?
« Reply #10 on: Mar 17th, 2004, 7:45pm » |
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Isn't the psilocybin reliably effective when it works for someone?
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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john123
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I would call 14 years completely, what did he do?
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jonny
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Ok John,
Cures....Noway, for anyone in the years Ive been here, but!!!
Finding the right prevenitive combo can make you almost cured (Almost!!)
Stick around and find out how.
..................................jonny
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jonny
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Charlie is epilepdic so he dont count.....LOL (Sorry Charlie)
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t_h_b
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primary chronic since 1999
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Re: found cures?
« Reply #14 on: Mar 17th, 2004, 7:55pm » |
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on Mar 17th, 2004, 7:53pm, jonny wrote:| Charlie is epilepdic so he dont count.....LOL (Sorry Charlie) |
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Jonny, does "epilepdic" have something to do with Yam bag spasms?
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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jonny
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on Mar 17th, 2004, 7:55pm, t_h_b wrote:
Jonny, does "epilepdic" have something to do with Yam bag spasms?
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Only while on Depakote
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Virginia
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Re: found cures?
« Reply #16 on: Mar 17th, 2004, 7:59pm » |
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Charlie has a whole "technique" that he does. I couldn't begin to explain it here because I don't even get it. You may try the archives or PM'ing him. He normally posts it in response to welcoming new people so you may want to check under the "new folks" section on the previous page.
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The Clusterhead formerly known as 9erfan.
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Filbert
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"Gravy-pure gravy and don't forget it."
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Re: found cures?
« Reply #17 on: Mar 17th, 2004, 8:01pm » |
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Some people are lucky enough to have longer remissions as they get older .Someone on the ouch uk board had gone 20 years without an attack then was suddenly hit again.
Filbert
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Virginia
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Re: found cures?
« Reply #18 on: Mar 17th, 2004, 8:10pm » |
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THB-
The answer to your question is yes, sort of....but you do have to take "maintenance doses". Most episodics do it prior to their next episode coming to avoid the onset. If they don't dose, most likely the clusters will come back.
V.
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The Clusterhead formerly known as 9erfan.
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tsayswhy
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Re: found cures?
« Reply #19 on: Mar 17th, 2004, 8:11pm » |
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Hello John
If we had something to make the beast stay away this board would not exist but until we do find a cure this is the best support groug you will find
wishing pain free!!!!
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if you are going my way---i will walk with you
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UN_SOLVED
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I need a fully-automatic Imitrex injector !!
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Re: found cures?
« Reply #20 on: Mar 17th, 2004, 8:31pm » |
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The ever effective 9mm cure ! 
(sorry ... wasn't that funny, huh !?)
Seriously though ~
What works for some, won't work for us all. It's the nature of the beast.
Unsolved
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I'm STILL alive ?
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Linda_Howell
CH.com Alumnus
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Hearing is one thing. Listening is another.
 
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Re: found cures?
« Reply #21 on: Mar 17th, 2004, 8:49pm » |
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John,
Don't mean to speak for Charlie since he is quite articulate, but he would tell you that he finds no reason that his HA's stopped. Might be age. Might be the epileptic meds he is on.
His "technique" is not the reason. He used that when he was in cycle. I have used it and it does work..for however long I can keep it up, that is. If he stops by this post, he can give you a link to it.
Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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toader
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there were fireworks on mars
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Re: found cures?
« Reply #22 on: Mar 17th, 2004, 9:41pm » |
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hey John ...
did someone say Yams? here's a cure: http://tinyurl.com/2putg
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Kevin_M
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Re: found cures?
« Reply #23 on: Mar 17th, 2004, 9:47pm » |
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on Mar 17th, 2004, 7:20pm, john123 wrote:a way to completely stop getting CH's for themselves?
John |
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John, cure here is a very...well...perhaps sought after word.
For a few, they may disappear. Why, well, when why they come in the first place is a mystery, why they disappear can be just as unsure an answer. Even if we
knew why, doing something about it takes large research bucks and we are a small market.
For some, medications work to keep them at bay, sparing some pain of the constant cluster torment . The right combination of meds that will work best for you takes doctor(s), you will probably see more than one, takes learning what works for others and seeing if it helps you. We all share what works, and doesn't, for
each of us, but each must find out on their own. That has been the "cure" we have shared here.
When there are no actual medications made for clusters, this board has been one long search for relief in the meantime. OUCH is doing what is possible from a group of clusterheads who have taken the initiative onto themselves to help perhaps, on a larger scale, quit waiting and push the envelope. There are some motivated individuals there, the struggle requires optimism where there has been little of in the past.
On one of the other boards here there is interesting work with an active aspect of mushrooms, with a foothold of acknowledgement worthy of money and
perhaps FDA approval.
In the meantime, working with what we have takes creativity, knowledge, good advice and trial and error. This we need. The beast knows he still has a long and healthy life to live within each one of us. Coping is a priority, so when jonny mentions, "stick around and find out how", this has been the best and strongest war we know how to fight. And as in war, there is some success and there is some suffering. Your odds on having more success lie here.
Asking for a cure and having the reality of the answers not meet expectations, then the hint is that the expectation is beyond recent scope. We live with that everyday and help each other not get down about it when the beast is at it's best. Perhaps we've been living without the expectation of a cure, but we do have to live with reality. Reality with active clusters is the present we have to deal with.
Without the patience to talk with us you will deprive yourself of knowing better ways to cope. If you were here three years ago and you feel things have not
changed cure wise, well maybe they haven't, but more knowledge has been gained by all who stay regarding their clusters. We have been here through those three years where things have perhaps not changed. But being they may not have, some have decided to stay and help those who also stay and those who are new that come. Those are uncommon expectations to have become reality.
The present cure is coping the best you can with the right medications, and friends who understand. Stay
curious, there are some doing ok here, some suffering
badly. When we see our friends doing good we are happy for them. When we see our friends doing badly, we are as supportive as can be. If we saw our friends doing badly and had a cure, would you think we would not run to their doorstep and share?
Cure is an understandilbly suspicious word. It is very hard to believe. Share what works for you, we share. If we could share a cure, we would.
Check the "newbie", "specifics" and "meds/treatments" boards too. I am sure you
yourself would suspicious if someone responded with a "cure". Actually, some of the best advice has been given in the previous posts above.
It's not a naieve question, but leaves open the door to what our experience with cures has lead to - doubt. There are those reaching farther now than ever before though. Find and join them.
Response to a cure? We've depended on a thousand doctors. We've depended on and trusted this family. It all helps greatly. A cure? Through it all, my response would be more smartass than helpful. The smartass replies I get make me laugh though, the help I've gotten, amazing.
Kevin M
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| « Last Edit: Mar 17th, 2004, 10:18pm by Kevin_M » |
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BlueMeanie
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John123,
No cure for clusters period. Some things work for some, but in 999/1000 it doesn't last long. Most people who are episodic think something works because their cycle ends. When the next cycle begins, they find out that what they took at the end of the last cycle does NOT work on their current cycle. There are abortives & preventives, but nothing to completely stop clusters.
No cure, No rhyme, no reason.
Clusters come, clusters go. Who knows why. No One.
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