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        New Message Board Archives >> Jan-Mar 2004 >> found cures?
        
(Message started by: john123 on Mar 17^th, 2004, 7:20pm)

Title: found cures?
Post by john123 on Mar 17^th, 2004, 7:20pm

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

Title: Re: found cures?
Post by t_h_b on Mar 17^th, 2004, 7:24pm

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)

Title: Re: found cures?
Post by jonny on Mar 17^th, 2004, 7:25pm

Not since ive been here and thats close to five years.

Are you going to tell us you have?....

.....................................jonny

Title: Re: found cures?
Post by t_h_b on Mar 17^th, 2004, 7:26pm

Jonny, are you thinking what I think you're thinking?

Title: Re: found cures?
Post by jonny on Mar 17^th, 2004, 7:28pm

Just asking, Dude...thats all

Title: Re: found cures?
Post by t_h_b on Mar 17^th, 2004, 7:29pm

I thought so!

Title: Re: found cures?
Post by john123 on Mar 17^th, 2004, 7:30pm

'are you thinking what I am thinking?' i am thinking I don't like the suggestion in those posts.

forget this

Title: Re: found cures?
Post by jonny on Mar 17^th, 2004, 7:31pm

As far as I know (Generic) John123, none has found "Cures"

Care to explain what you mean?

.........................jonny

Title: Re: found cures?
Post by john123 on Mar 17^th, 2004, 7:40pm

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.

Title: Re: found cures?
Post by 9erfan on Mar 17^th, 2004, 7:42pm

Don't mind Jonny....he's very suspicious.

I would say the answer is "NO". Although Charlie has not had any in 14 years.

Title: Re: found cures?
Post by t_h_b on Mar 17^th, 2004, 7:45pm

Isn't the psilocybin reliably effective when it works for someone?

Title: Re: found cures?
Post by john123 on Mar 17^th, 2004, 7:48pm

I would call 14 years completely, what did he do?

Title: Re: found cures?
Post by jonny on Mar 17^th, 2004, 7:50pm

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

Title: Re: found cures?
Post by jonny on Mar 17^th, 2004, 7:53pm

Charlie is epilepdic so he dont count.....LOL (Sorry Charlie)

Title: Re: found cures?
Post by t_h_b on Mar 17^th, 2004, 7:55pm

on 03/17/04 at 19:53:07, jonny wrote:

Charlie is epilepdic so he dont count.....LOL (Sorry Charlie)

Jonny, does "epilepdic" have something to do with Yam bag spasms?

;;D

Title: Re: found cures?
Post by jonny on Mar 17^th, 2004, 7:57pm

on 03/17/04 at 19:55:36, t_h_b wrote:

Jonny, does "epilepdic" have something to do with Yam bag spasms?
;;D

Only while on Depakote ;;D

Title: Re: found cures?
Post by 9erfan on Mar 17^th, 2004, 7:59pm

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.

Title: Re: found cures?
Post by Filbert on Mar 17^th, 2004, 8:01pm

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

Title: Re: found cures?
Post by 9erfan on Mar 17^th, 2004, 8:10pm

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.

Title: Re: found cures?
Post by tsayswhy on Mar 17^th, 2004, 8:11pm

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!!!!

Title: Re: found cures?
Post by UN_SOLVED on Mar 17^th, 2004, 8:31pm

The ever effective 9mm cure ! [smiley=laugh.gif]

(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

Title: Re: found cures?
Post by Linda_Howell on Mar 17^th, 2004, 8:49pm

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

Title: Re: found cures?
Post by toader on Mar 17^th, 2004, 9:41pm

hey John ...
did someone say Yams? here's a cure: http://tinyurl.com/2putg

Title: Re: found cures?
Post by Kevin_M on Mar 17^th, 2004, 9:47pm

on 03/17/04 at 19:20:56, john123 wrote:

a way to completely stop getting CH's for themselves?
John

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

Title: Re: found cures?
Post by BlueMeanie on Mar 17^th, 2004, 10:00pm

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.

Title: Re: found cures?
Post by eyes_afire on Mar 17^th, 2004, 11:22pm

Quote:

Isn't the psilocybin reliably effective when it works for someone?

Not always. It's not a slam dunk. My results with it were spotty and uncertain. It still probably has a better track record than most other things though.

--- Steve

Title: Re: found cures?
Post by Tiannia on Mar 17^th, 2004, 11:43pm

on 03/17/04 at 19:26:56, t_h_b wrote:

Jonny, are you thinking what I think you're thinking?

I am. My first thought was "Oh God not another one..." snicker, snicker, snicker

Tia

Title: Re: found cures?
Post by Lizzie2 on Mar 17^th, 2004, 11:51pm

My dad's best friend got clusters when he was in college and went chronic for 9 years and then one day they simply disappeared. Have no idea why...to this day he still doesn't know. He hasn't had one since 1980. Hoping to God that happens for more people here!!

Lizzie

Title: Re: found cures?
Post by t_h_b on Mar 17^th, 2004, 11:59pm

on 03/17/04 at 22:00:49, BlueMeanie wrote:

Yup. These damned things are sneaky & tricky.

Title: Re: found cures?
Post by BarbaraD on Mar 18^th, 2004, 7:12am

John,
Wish we could be positive about a cure, but as has been said - Nothing works for everyone and nothing seems to last.

I was in "remission" with Topamax for years and then one day it just quit working. No reason - it just quit.

Kip was chronic and then just quit having 'em. Three years later - Bam - he's back to square one again.

I've been here (on this MB) since 98 and have heard (and tried) most of the "cures" - what worked for some - didn't help me at all (most of the time).

Right now, I'm getting some rest with Melatonin at night. But at 3 almost every morning I get a wake up call from the Demon. No rhyme - no reason - just the way of the beast.

Your post was legitimate - we're all looking for a cure, but over the years we've had a lot of snake-oil salesmen come over here and say they had a CURE for what ailed us. So that's why we're all a little skittish about the word CURE.

don't take offense at it - stay around and ask your questions. By sharing info with each other someone might actually get some PF time and that's what this is all about PF time for all of us.

Hugs BD

Title: Re: found cures?
Post by john123 on Mar 18^th, 2004, 8:22am

thank you very the replies, I noticed a cure-all spam was included so i suppose johnny concerns are well founded.

i am still digesting them

I am having shadows right now, I hope not to have full ch's. The only thing i remember about the last one I had was that i realized I could never remember how painful they are, and the amount of pain will always be suprizing.

I really hope everyone finds a solution for them, from the depths of my being