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(Message started by: Nanook_of_Inuvik on Aug 30th, 2004, 1:20am)
Title: Finally understand cause of CH
Post by Nanook_of_Inuvik on Aug 30th, 2004, 1:20am
I've been suffering for 4 horrible years.

Fellow CHeads, I want you to do an experiment for me:
Try to eliminate any foods with preservative "Disodium Phosphate", "Disodium Calcium EDTA", or "Disodium Inosinate" from your diets. You'll find it in just about everything including cereal, most kinds of sauces, salad dressings and preserved meats.

This chemical variant of Sodium (Na+2) interacts with neurolytic agents in your synaptic clefts of your nerves in the hypothalamas, which causes the Clusters.

It takes an average of 2-3 hours to be absorbed into your blood stream, which is why it took so long for me to determine cause of my CH, and why nobody else has been able to either. Allergies react fairly quickly, this stuff takes so long that it is discounted as a cause.

THE GOOD NEWS: Similar to the WaterX3 treatment, which flushes the Disodium, there is an unbelievably simple cure. Besides avoiding any foods that contain the stuff, which I do religiously at restaurants and at the grocery store, you can drink Gatorade.

By following this regimen, I've been able to get control of my Cluster Headaches.

Please don't discount the simplicity of this cure. Try it, and let me know if you have any success.
Title: Re: Finally understand cause of CH
Post by Superpain on Aug 30th, 2004, 1:33am
Oh god... You're gonna get your ass handed to you. Just a fair warning...

But I like your name. You share it with my dog. :D
Title: Re: Finally understand cause of CH
Post by Nanook_of_Inuvik on Aug 30th, 2004, 1:37am
Try it for 2 days. I have never felt such a relief to be alive as having some modicum of control over these out rageously painful headaches.

I describe mine as "giving birth to a porcupine backwards through my eyeball"
Title: Re: Finally understand cause of CH
Post by Superpain on Aug 30th, 2004, 1:41am
Personally, I'm not in cycle right now...
But after 18 yrs of at one time or another quitting EVERYTHING to try to find relief and coming to the conclusion that my CH does not have to do with anything that I intake, I can't help but laugh.
If indeed you do have clusters and indeed this WAS the culprit... Congratulations!

But that's just fuckin silly.
Seriously...
Title: Re: Finally understand cause of CH
Post by Nanook_of_Inuvik on Aug 30th, 2004, 1:47am
Humor me, go to your fridge and cupboards right now and look at ingriedients of a wide variety of foods.

The science and anatomy lessons have been toned down to protect the weak of mind, but I could get into it....

Prove me wrong, prove me a liar.

Disodium is in EVERYTHING. Its insidiuos nature is its success in slipping past our desperate CH radars.
Title: Re: Finally understand cause of CH
Post by clarence on Aug 30th, 2004, 2:53am

on 08/30/04 at 01:20:10, Nanook_of_Inuvik wrote:
You'll find it in just about everything including cereal, most kinds of sauces, salad dressings and preserved meats.


If it is in everyting..what am I supposed to eat?  This isn't just a help for clusters, its a miracle diet too!  I am finally going to get rid of the HA's and all that unwanted fat.

Hey, if it worked for you...great.  Congratulations.

Casey
Title: Re: Finally understand cause of CH
Post by Superpain on Aug 30th, 2004, 4:10am
2 days huh?
What would you say to someone who has fasted for let's say 4 days, and still gets hit?
Title: Re: Finally understand cause of CH
Post by synergy on Aug 30th, 2004, 4:24am
Glad it worked for you hun - congratulations.

I wont be trying it on marc though - he has lost over 2 stones since the CH started from throwing up in attacks. Im hardly going to stop him eating everything am i!

But i am intriqued - what did you manage to eat if these thingy's are in everything? ::)
Title: Re: Finally understand cause of CH
Post by pubgirl on Aug 30th, 2004, 5:06am

on 08/30/04 at 01:47:42, Nanook_of_Inuvik wrote:
The science and anatomy lessons have been toned down to protect the weak of mind, but I could get into it....



What do you mean by this?

Wendy
Title: Re: Finally understand cause of CH
Post by don on Aug 30th, 2004, 6:51am
Glad your tension headaches have eased up.
Title: Re: Finally understand cause of CH
Post by Redd715 on Aug 30th, 2004, 6:57am
I'm still waiting for the punch line.

Title: Re: Finally understand cause of CH
Post by eddie on Aug 30th, 2004, 9:57am
i have been eating since i was a child no
HA TILL 20YRS old
I HAD A BAD ONE ALL NIGHT NO FK SLEEP k8 or 9
IHAVE BEEN EATING CEREL FOR THE LAST HR  
AND I FEEL BETTER  thats odd  i like rasin bran
so i used nothing but cerel and eased off to k5
  {finely} what kind do you eat capn crunch
         wacky wheaties i have to know
             
Title: Re: Finally understand cause of CH
Post by Margi on Aug 30th, 2004, 10:09am
Hey Nanook - I think you're our first poster EVER from that far north.

Please feel free to visit us at OUCH Canada - we've got a gal moving to Whitehorse in the near future so that will make 2 of you Canadian clusterheads that we know of in the Territories.

Now...hate to burst your bubble, and while I think your diet is very wise and probably can make a difference in how your body reacts to 'cluster triggers (for want of a better word)' - there has been extensive research into the cause of cluster by Dr. Goadsby of the UK.  It's been determined that the hypothalmus is different in clusterheads compared to non-clusterheads.  That's what they're thinking to be the cause of cluster.

Tell me something...have you been diagnosed to have cluster?  You say you've been suffering for 4 years.  Every day?  Or did you have pain free periods in those 4 years?  How long does each headache last?  What meds have you tried?

Again, please feel free to drop in on us Canadian cluster folk at http://www.clusterheadaches.ca
Title: Re: Finally understand cause of CH
Post by farmboy on Aug 30th, 2004, 12:52pm
gatorade ???  i drink that stuff by the gallon  i should have no ch ever.   But i get hit just like everyone else.

No need to tone it down for us here.
Title: Re: Finally understand cause of CH
Post by BobG on Aug 30th, 2004, 1:07pm

on 08/30/04 at 01:47:42, Nanook_of_Inuvik wrote:
The science and anatomy lessons have been toned down to protect the weak of mind, but I could get into it....

.


Bubba and Junior and me would like ta here bout yo gatorade theory. Please type slow. We don't read too fast.

That was a hellava way to introduce yourself. Care to back up and start over?
Title: Re: Finally understand cause of CH
Post by Jonny on Aug 30th, 2004, 1:14pm
What a dumbass!!

Im being nice

...........................jonny
Title: Re: Finally understand cause of CH
Post by Redd715 on Aug 30th, 2004, 1:17pm

on 08/30/04 at 13:14:53, Jonny wrote:
What a dumbass!!

Im being nice

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


Least he's not selling anything....


(still waiting for the punch line......)

tick tock tick tock
Title: Re: Finally understand cause of CH
Post by ExplodingEyeBall on Aug 30th, 2004, 1:51pm
PUNCH LINE:

Hey Nanook...

Have you ever tried sleeping standing on your head after eating ground up chicken feet mixed with diesel fuel and followed by a cat shit and ammonia rub on the head?

It worked for me.
Title: Re: Finally understand cause of CH
Post by Nanook_of_Inuvik on Aug 30th, 2004, 3:05pm
After many specialist visits, x-rays and a CAT scan, I was finally diagnosed with Cluster Headaches. It took me 3 years to figure out what ingriedient in food was triggering them, or even to make the connection at all.

There is a 3 hour delay between consuming the food and the trigger.

By avoiding foods with "Disodium anything" I have been able to live relatively CH free, and if any disodium gets under my radar, Gatorade quells the attack within 15 minutes.

Look at your ingredient lists. Prove me wrong.

I know the pain that you people feel. I want to live drug-free and CH free. I want to empower you all as well.

Please don't post replies until you investigate your ingredient lists from food in your cupboards.
Title: Re: Finally understand cause of CH
Post by Redd715 on Aug 30th, 2004, 3:10pm
DING DING DING



Round 2......

Place your bets folks....how many rounds?
Title: Re: Finally understand cause of CH
Post by ExplodingEyeBall on Aug 30th, 2004, 3:22pm

on 08/30/04 at 15:05:09, Nanook_of_Inuvik wrote:
After many specialist visits, x-rays and a CAT scan, I was finally diagnosed with Cluster Headaches. It took me 3 years to figure out what ingriedient in food was triggering them, or even to make the connection at all.

There is a 3 hour delay between consuming the food and the trigger.

By avoiding foods with "Disodium anything" I have been able to live relatively CH free, and if any disodium gets under my radar, Gatorade quells the attack within 15 minutes.

Look at your ingredient lists. Prove me wrong.

I know the pain that you people feel. I want to live drug-free and CH free. I want to empower you all as well.

Please don't post replies until you investigate your ingredient lists from food in your cupboards.


BLAH BLAH BLAH BLAH X-Ray BLAH BLAH BLAH BLAH cat Scan BLAH BLAH BLAH BLAH BLAH BLAH BLAH BLAH Disodium BLAH BLAH BLAH BLAH I beat off with both hands BLAH BLAH BLAH BLAH BLAH BLAH BLAH BLAH Gatorade BLAH BLAH BLAH BLAH BLAH BLAH BLAH BLAH BLAH BLAH BLAH BLAH Don't post BLAH BLAH BLAH BLAH BLAH BLAH BLAH BLAH BLAH BLAH BLAH BLAH  I'm a MORON BLAH BLAH BLAH BLAH BLAH BLAH BLAH BLAH
Title: Re: Finally understand cause of CH
Post by BobG on Aug 30th, 2004, 3:27pm

Quote:
Please don't post replies until you investigate your ingredient lists from food in your cupboards.

In our house the dining room table is for decoration and only there as a plant stand and the stove top is a resting place for the Mr.Coffee maker. The cupboards are for storing old hot rod magazines.
The wife and I eat 98% of our meals in restaurants. The other 2 percent are at fast food joints. I don't think the people in the kitchen(s) would be happy if we were to inspect the cupboards.

Now what? Should we order Gatorade with every meal?


Quote:
Prove me wrong.  

You also posted your theory on the Medications, Treatments, Therapies board. Please go there and read Ueli's reply and prove him wrong.
Title: Re: Finally understand cause of CH
Post by vig on Aug 30th, 2004, 3:28pm
funny, I quit eating altogether, and still WHAMMY!

Maybe it's NOT the food after all.
Title: Re: Finally understand cause of CH
Post by Nanook_of_Inuvik on Aug 30th, 2004, 3:50pm
If every cure worked for everybody, then we would be able to shut this website down.

My cure may not work for everybody, especially not loud-mouth jerks like several of the American responses, but it may work for a few of us.

I decided I didn't want to take imitrix for the rest of my life, now I'm free.
Title: Re: Finally understand cause of CH
Post by ExplodingEyeBall on Aug 30th, 2004, 4:06pm
I eat and drink the same way every single day of every single year.

I get CH every spring for about 6 weeks and every fall for about 6 weeks. I sometimes get a couple in between.

How can you explain your theory when I don't ever make any major changes to my diet yet you are calling ingesting disodium anything the "CAUSE" of CH???

BTW:Jerk is not the worst thing I've been called. Troll would be worse.
Title: Re: Finally understand cause of CH
Post by Redd715 on Aug 30th, 2004, 4:19pm
I think this was what really cured Naook's clusters....

But I wouldn't recommend it.....

http://im1.shutterfly.com/procserv/47b4d634b3127cceb408b90525180000001610
Title: Re: Finally understand cause of CH
Post by BobG on Aug 30th, 2004, 4:21pm

Quote:
My cure may not work for everybody, especially not loud-mouth jerks like several of the American responses, but it may work for a few of us.


Hey, hey, hey. Wait a minute! There are loud mouth jerks in Canada too. We may be the greatest, richest and most blessed country the world has ever seen but we do not claim to have the best nor the brightest loud mouth jerks.

Question about the Gatorade cure.........the red, green or yellow?
Title: Re: Finally understand cause of CH
Post by Superpain on Aug 30th, 2004, 4:39pm
Well... I'm finally checking back in.
Nanook, I told you this wasn't going to be well recieved... 8)
Title: Re: Finally understand cause of CH
Post by ExplodingEyeBall on Aug 30th, 2004, 4:49pm

on 08/30/04 at 16:21:05, BobG wrote:
but we do not claim to have the best nor the brightest loud mouth jerks.


Speak for yourself.

If you're going to be something, you'd might as well be the best you can at it.

I'm a good jerk, Nookie man is a good troll.
Title: Re: Finally understand cause of CH
Post by Nanook_of_Inuvik on Aug 30th, 2004, 4:58pm
true, superpain.

I give up trying to illuminate one possible cause of CH.

The wide variety of cures out there that may or may not work for everybody illustrates the difficulty of treating CHs.

I too would have responded rudely to a suggestion such as mine until I actually tried it. I hope that there's someone out there I can help through this suggestion.

I've met many nice intelligent Americans, and I always try think of them when the chorus of not a very nice person Americans continually drowns them out.


Title: Re: Finally understand cause of CH
Post by BobG on Aug 30th, 2004, 4:59pm

on 08/30/04 at 16:39:41, Superpain wrote:
Nanook, I told you this wasn't going to be well recieved... 8)


Don't you just hate it when nobody will listen to you?  ;;D
Title: Re: Finally understand cause of CH
Post by Margi on Aug 30th, 2004, 5:24pm
Folks, everyone take a breath please.  Lest we forget here....we were ALL newbies at some point and we ALL thought we had found something that helped our (or our sufferer's) clusters.  When that first remission hit - we figured we'd found the cure, right?  Who knew about the term "remission" during that first remission?

uh...isn't there a possibility that this guy might be in his first remission?  I think we all agree that he's maybe hunting down the wrong path, but...haven't we all done that at some point in our journeys?

Hell, I remember posting in the early days that Mike aborted an attack by brushing his teeth.  We were pretty damned excited about it, too!  I'll tell ya what - his teeth had never BEEN so clean in the ensuing days!!  We were SURE it was the massaging action on the gums that did it.  Then there was the time I had him shove mustard powder up his nostril - read somewhere that that might help.  THAT was exciting.  

Don't lose sight of the fact that we all do reach that desparation of clinging to any possible hope.  

Yes, the "jerk" comment was rude and uncalled for.  I won't dispute that and I'm not sticking up for Nanook just because he's a fellow countryman.  Nanook, you need to take a breath too, ok?  

This can be a pretty intimidating group for newcomers, remember.  What is a knee-jerk reaction now to those of us who see those inevitable "cure" posts can be like a red flag to a bull (from a newcomer's perspective).  I think we've become an online sorting bin - offhandedly discarding repeat subjects (I'm not saying I'm blameless here either) and not recognizing that we are discarding people in the process.  

Let's not lose sight of the fact that Nanook DID say this:

on 08/30/04 at 16:58:28, Nanook_of_Inuvik wrote:
I hope that there's someone out there I can help through this suggestion.


and that probably IS his reason for posting on this subject.  

Posting pictures of heads up butts is pretty high school, dontcha think?  

Maybe educating newbies would be a better approach?

just my two cents worth here.  


p.s.  Nanook - I honestly don't think that diet is a cause of CH.  I don't dispute the fact that when a clusterhead is in cycle that they ARE more sensitive to food additives and I've seen many different foods trigger attacks for my husband when he is in cycle.  The real test of this is to try the food in question when you are out of cycle.  Chances are, it won't trigger an attack for you.  So far, our research has proven that nitro-glycerine is the ONLY recognized trigger for anyone out of cycle.  And - seriously - the enlarged/different hypothalmus in clusterheads really does seem to be the cause, ok?
Title: Re: Finally understand cause of CH
Post by Superpain on Aug 30th, 2004, 5:33pm
Well, "Bear"... I really don't think it has anything to do with America.

But you must understand something. We do not know the "cause" of cluster's, nor do you, and there is so far  no cure. We all know that, and that is precisely why you have been met with such opposition. People claiming to know of a cause or cure are not well recieved here because we know it's bullshit just by the title of the post! We don't even have to read the thread...

As I've stated a hundred times before, I will never be convinced that Ch has anything to do with anything you or I eat, drink or smoke.
I believe that certain foods and liquids contain ingredients that will trigger a headache, but that is all. And a trigger is something completely different from a cause, and it has nothing to do with a cure.

If you do have clusters, and they stopped once you stopped eating certain foods then either you were very lucky to stumble upon something that ended your cycle, or your cycle just ended on it's own... Either way, if you do truely have clusters, they are going to come back no matter what you do or don't eat. I'd bet all my money and both testicles on that.

Your best bet is to abandon this conversation because no one is going to listen to you... And read up on effective treatments so that you may be prepared when they do come back and you realize what I say is true.
There's alot of us that have had clusters for decades, and combined our experiences equal hundreds of years in research into this subject. And I'm telling you right now, beyond triggers, food and drink have no correlation with clusters. You can believe me now or believe me when you get back into cycle.
Title: Re: Finally understand cause of CH
Post by thomas on Aug 30th, 2004, 5:34pm

on 08/30/04 at 16:58:28, Nanook_of_Inuvik wrote:
The wide variety of cures out there that may or may not work for everybody illustrates the difficulty of treating CHs.

Excuse me, but there are NO cures out there, only treatment methods.
Title: Re: Finally understand cause of CH
Post by Superpain on Aug 30th, 2004, 5:36pm

on 08/30/04 at 17:34:45, thomas wrote:
Excuse me, but there are NO cures out there, only treatment methods.

You should work for Cliff's Notes Thomas. ;;D
Title: Re: Finally understand cause of CH
Post by BlueMeanie on Aug 30th, 2004, 5:38pm
Now all you need is Cluster Headaches to proove your cure.   >:(
Title: Re: Finally understand cause of CH
Post by Margi on Aug 30th, 2004, 5:47pm
"wow, hey thanks Margi, for the calm, level-headed post."  

"hey, no problem."

and now... back to your regularily scheduled program. ::)
 
Title: Re: Finally understand cause of CH
Post by Superpain on Aug 30th, 2004, 5:53pm
LOL... [smiley=laugh.gif]
That's kinda what I was thinking...
But it's not like he wasn't warned. ;)
Title: Re: Finally understand cause of CH
Post by BobG on Aug 30th, 2004, 5:54pm

on 08/30/04 at 17:47:11, Margi wrote:
"wow, hey thanks Margi, for the calm, level-headed post."  

"hey, no problem."

and now... back to your regularily scheduled program. ::)
 

Ditto what Margi said.




LMAO  [smiley=laugh.gif]
Title: Re: Finally understand cause of CH
Post by thomas on Aug 30th, 2004, 5:57pm

on 08/30/04 at 17:36:58, Superpain wrote:
You should work for Cliff's Notes Thomas. ;;D

Yeah, I'm just too damn blunt.  I don't know how to use too many words.  ;)
Title: Re: Finally understand cause of CH
Post by IndianaJohn on Aug 30th, 2004, 6:29pm

on 08/30/04 at 17:47:11, Margi wrote:
"wow, hey thanks Margi, for the calm, level-headed post."  

"hey, no problem."

and now... back to your regularily scheduled program. ::)
 



Yeah, what Margi said.
Title: Re: Finally understand cause of CH
Post by bean on Aug 30th, 2004, 6:43pm
I actually look for foods with disodium inosphate & disodium guanylate, etc. because they help replace Mono-sodium Glutamate, a big cause of my headaches..
Title: Re: Finally understand cause of CH
Post by Kevin_M on Aug 30th, 2004, 9:05pm

on 08/30/04 at 15:05:09, Nanook_of_Inuvik wrote:
Look at your ingredient lists. Prove me wrong.

Please don't post replies until you investigate your ingredient lists from food in your cupboards.


I have looked.  Not a single item in the cupboard or refrigerator in the past eight years has had this ingredient.



Quote:
My cure may not work for everybody,

Sure covered your butt here.  But then again, the word everybody can also be replaced with anybody can't it.  It would read better that way and be more truthful.


Quote:
especially not loud-mouth jerks like several of the American responses

Oh, this must be why your cure has not worked for me.  Well, at least I know why now.  You did not say this could automatically eliminate us from your cure.  Darn.


Kevin M
Title: Re: Finally understand cause of CH
Post by don on Aug 30th, 2004, 9:25pm

Quote:
The wide variety of cures out there


Thats the fucking problem!

There are so many of them that after 26 years of suffering I still cant decide which one I want.

I've been told I look good in a tin foil hat but it clashes with my vibrating glasses. On and on and on.
Title: Re: Finally understand cause of CH
Post by Jonny on Aug 30th, 2004, 9:38pm
The big question is........Do you know who is posting as two different people?

............................jonny
Title: Re: Finally understand cause of CH
Post by don on Aug 30th, 2004, 9:41pm

Quote:
Do you know who is posting as two different people?


Two? You think only two.

Ever noticed there sometimes is a big influx of newbies with strange sounding names and the same posting style?

Strong knowledge of ISPs is a good thing to have.
Title: Re: Finally understand cause of CH
Post by Jonny on Aug 30th, 2004, 9:43pm

on 08/30/04 at 21:41:01, don wrote:
Two? You think only two.

Ever noticed there sometimes is a big influx of newbies with strange sounding names and the same posting style?

Strong knowledge of ISPs is a good thing to have.


Its nice to know someones paying attenion, dude

...................................jonny
Title: Re: Finally understand cause of CH
Post by Redd715 on Aug 30th, 2004, 9:55pm
Yeah sounds familiar Boys....

can I get in on this?
Title: Re: Finally understand cause of CH
Post by Pegase on Aug 30th, 2004, 11:15pm

on 08/30/04 at 17:47:11, Margi wrote:
"wow, hey thanks Margi, for the calm, level-headed post."  

"hey, no problem."

and now... back to your regularily scheduled program. ::)
 


That was perfect Margi.... Thanks darling... We canadian are good peacekeeper no?

8)
Title: Re: Finally understand cause of CH
Post by eyhavhedaches on Sep 1st, 2004, 12:29pm
I have to agree with him about the way some people were responding to him. We are all in the same boat and nanook has experianced pain just like the rest of us. There was no where in his message did he claim that he found " the" cure but that he has found what seems to be working for him. Every single one of our clusters are all differant almost in the same sense of our fingerprints are all differant, however the one common facter and simularity is that we all experiance pain. The reason this board exists is because we share what works and what don't and if what nanook helps out just one other person that uses this board than he has done that person a great deed. However nanook, I would like to caution you, I do not believe you have found your cure rather than having found your major trigger. You may be in an extended remmision period which many of us have experianced and it could be leading you to believe that the disodium was the cause. You may be setting your self up for a major dissapointment when they return. I was thirteen when I was reffered to a dietician to help with my Ch which was than very very uncommonly heard of. The dietician cut all sodiums out of my diet and it did not manage to effectively do anything. Sorry bout the bad news!!
Title: Re: Finally understand cause of CH
Post by ExplodingEyeBall on Sep 1st, 2004, 3:28pm

on 09/01/04 at 12:29:38, eyhavhedaches wrote:
There was no where in his message did he claim that he found " the" cure


Check the last two lines of his original post.
Title: Re: Finally understand cause of CH
Post by BobG on Sep 1st, 2004, 3:51pm
In Nanook's reply #23 he used the word "cure". And again in reply #29.

Maybe he just doesn't understand the word "cure" as used on this board. Maybe if he used the word "treatment" or "here's what has helped me" then this string would have turned out more friendly.


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