Clusterheadaches.com Message Board


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

        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> The Zone Diet/EPA Supplements, Other Questions
        
(Message started by: crausman on Sep 5^th, 2006, 4:25pm)

Title: The Zone Diet/EPA Supplements, Other Questions
Post by crausman on Sep 5^th, 2006, 4:25pm

Hello --

When my CH started, I would have 1-2 hits a day in the middle of the night, kip 8-9ish - scary, because I had no idea what was going on then. When I figured out I had to quit drinking my nightly beers, CH got much better. It has gone gradually down to 1-5 hits/week at mostly shadow or 3-4 level; I can abort with a quickly chugged double-strength cup of coffee. So what if I have to occasionally have a cup of coffee in the middle of the night?

3 questions:

1 - Have most of us been historically heavy smokers/drinkers?

2 - Has anyone tried Dr. Sears' The Zone diet, which balances protein to carbs (7g protein to 9g carbs) plus lots of EPA (special fish oil) supplementation? Dr. Sears says that no matter what type of pain, increase the EPA as needed (probably a WHOLE lot for someone deep in a cycle). You can also do the EPA bit without doing the dietary adjustments.

I am a strict vegetarian so I cannot do EPA; I do DHA, which can be converted to EPA in the body. I have been on a Zone-ish diet since last year. All I know is that, except in the beginning, I haven't suffered to the extent (so far) that a whole bunch of you have and am wondering if there's something to the Zone diet/supplementation bit that could help.

3 - There's a connection to REM sleep, which is rapid eye movement. Has anyone noticed a hit coming on after they've read for a long time (more eye movement)? I have noticed this tendency in myself mostly at night. I can sit here all day and use this computer at work, and I don't get hit. But then I'm drinking coffee all day, too, just like I've done for many, many years.

What do you think?

Candi

Title: Re: The Zone Diet/EPA Supplements, Other Questions
Post by Katherinecm on Sep 5^th, 2006, 11:36pm

Hi Candy,

Welcome to the board. I have never drank much or smoked, although I guess statistically clusterheads have higher incidents of addiction than others. My theory on this is that the same things that make you genetically prone to addiction are the things that make you genetically prone to CH if the right conditions exist, whatever those are. That might be why some things work for addiction that also help with CH- things like Topamax, for example. On the other hand, almost every human behavior problem (addictions, violence, anorexia, things we think of as psychological problems) has been in some way linked to seratonin, dopamine, or norepinephrine imbalances in the brain, so it could just be a coincidence. Or perhaps clusterheads have hypothalamus problems from birth, long before they show any syptoms, and subconsciously attempt to medicate themselves with addictive substances that alter the seratonin balance before they have a headache at all... It's all speculation, I don't think that anyone's done much research on this. I can tell you that I have had some of the traits of CH long before I had syptoms- high pain tolerance, disturbed sleeping patterns, low immune system, practically from birth.

As for the diet question, some people have noticed that controlling their blood sugar seems to help. It seems to only matter for those with underlying blood sugar issues. The problem is, different diets to control blood sugar work differently in different people, so saying "the zone" is not going to work for everyone. Some people find that very low fat vegan 'detox" diets help, and in some cases can even end a cycle for them, others find that constantly having small portions of protein throughout the day is better.

Essential fatty acid supplements are an anti-inflammatory. Some people find they help, others do not. Sometimes you have to be careful mixing high doses of some supplements with some of the drugs we are on- they increase risk of bleeding. If you're taking prescription meds, especially preventatives, make sure you tell to your doctor about this.

I haven't noticed reading being a trigger for me, but it's possible. I keep a list of everything that might be a trigger, and go back and test them again later. Most of the things end up being a coincidence in my case. Perhaps you would be getting the nighttime hits anyway.

Title: Re: The Zone Diet/EPA Supplements, Other
Post by starlight on Sep 6^th, 2006, 5:45pm

Hey Crausman!

Well one interesting thing--I got my first cluster episode before I had ever touched anything--including cigs, alcohol, and even coffee!!! I was 14. Later in life I did all that stuff in college. Quit smoking--still got 'em. Quit drinking--still got 'em. In fact one time a neuro was asking me about smoking and I said that I (at that time did smoke) but had previously quit for 6 years and still got clusters. His response was "Yeah, that's cause it doesn't matter (whether you smoke or not at least as pertains to clusters)". Don't know if he's right--but it never made a difference whether I got 'em or not. Never shortened cycles or improved it in any way.

Your question about reading and has it ever triggered CH. Interesting! Back in college I had a nutty professor who gave us two days to read the book "Invisible Man". It's a LONG book--if I remember about 500 pages. Well wouldn't you know I spent eight hours nonstop reading the damn thing as fast as I could cause it IS a long book, laid my head down and went to sleep and BOOM--not only did it trigger a cluster headache--it triggered a whole cycle. Let me say I am a voracious reader and reading has never triggered a CH for me other than this one time--BUT it was reading quickly for eight hours with my eyes darting back and forth quickly that did it. Moral of the story--don't read for 8 hours straight as quicklly as you can!!!
Take care, Star

Title: Re: The Zone Diet/EPA Supplements, Other Questions
Post by paulc on Sep 7^th, 2006, 12:09pm

Dear Katherinecm,
I take objection to your statement that CH sufferers have a high rate of addiction. Speaking for myself, and based upon what I have read from others on the board, the great majority of CH sufferers have a lesser amount of addiction than the general population. I know that I stopped drinking alchohol years ago, not because I was addicted to alchohol but because I realized that alchohol was a CH trigger for me; I had a wonderful wine collection, worth several thousand dollars, which I gave away as presents to friends because the brief joy of drinking several glasses of a fine Bordeaux with dinner was not worth the horrible CH pain that followed. While I do smoke, smoking neither decreases nor increases the amount or severity of my CH and my doctors, while wanting me to stop smoking was for the same reasons that they want everyone to stop smoking-it can cause all sorts of nasty diseases, but CH is not one of them nor does it worsen CH.
I think that unless you can prove that people who suffer from CH have a "high rate of addiction" (and you failled to disclose to what we have a high rate of addiction to), you OWE us an apology! We have a difficult time enough with our disease, not only from the physical and emotional pain that it causes us plus the perception of others, some doctors included, that our pain cannot be "that bad" or that we suffer from some psychosomatic illness, without having someone who is a member of our group labeling us as addictive personalities. I don't know your situation regarding CH, but I am chronic and have been for over 10 years and I wish that I could switch places with you for a week and let you suffer as I do (and as many others do). Right now I am not a "happy camper".

Title: Re: The Zone Diet/EPA Supplements, Other Questions
Post by Margi on Sep 7^th, 2006, 12:21pm

Paul, sorry to interrupt here but Katherine's right. There is a real tendancy in clusterheads to have sensitivities to addiction because of the seratonin imbalance. Here's an article from the OUCH library on the subject - although it addresses cocaine addicition, the methodology is there.

http://www.ouch-us.org/chgeneral/seratonin/serotonin15.htm

and here's the whole seratonin page:

http://www.ouch-us.org/chgeneral/seratonin.htm

Title: Re: The Zone Diet/EPA Supplements, Other Questions
Post by paulc on Sep 7^th, 2006, 12:36pm

I read them both and nowhere does it say that CH sufferers have a high or higher level of addiction to drugs or alchohol than the general population. They wrte about MICE having a higher sensitivity to cocaine but NOWHERE does it state that CH sufferers have a high addiction rate. I think that you are drawing a conclusion from a speculation. I will start a new thread to see what the response is from OUCH members concerning their use of alchohol and drugs. I think that such speculation as yours does harm to the image of CH sufferers and can be taken to mean by some that we are a bunch of drug abusing alchoholics and that our disease is probably caused from substance abuse.

Title: Re: The Zone Diet/EPA Supplements, Other Questions
Post by Katherinecm on Sep 7^th, 2006, 1:35pm

First of all, I'm chronic too. No, I have not been so for as long as you, but I have been getting hit so hard and so many times for the last 6 weeks that I am having a really hard time dealing with it. I resent your presumption that anyone here does not know what pain is. I am not interested in any contest to see who is in the worst pain.

I have heard MANY times, including on this board, that there is a high correlation between addictions- especically to smoking -and initial diagnosis. Here are some places you can read about it:

http://www.med-owl.com/clusterheadaches/tiki-index.php?page=Smoking

http://www.achenet.org/articles/cluste1.php

http://www.mayoclinic.com/health/cluster-headache/DS00487/DSECTION=4

http://query.nytimes.com/gst/fullpage.html?sec=health&res=9C0CEFD9123EF93AA3575BC0A966958260

I'm not interested in listing a bunch more. Search online for risk factors and see what you find before you go attacking me or anyone else for posting statistically valid information.

Title: Re: The Zone Diet/EPA Supplements, Other Questions
Post by Bob P on Sep 7^th, 2006, 4:27pm

Anyone can simply look at the questionaire on this site and it is plain to see that clusterheads have a highly addictive nature. They smoke at 2-3 times the national rate. If you've been to a convention you know that they drink much more than "socially".

Many get very offended when this subject comes up but that's simply because they are in denial.

Some say they have never been additced to anything. To them I say try indocine!

Title: Re: The Zone Diet/EPA Supplements, Other Questions
Post by jmorgan52 on Sep 7^th, 2006, 4:46pm

PaulC

Katherine needs to apologise to nobody here!

Why not try some of the "less orthodox" non-drug methods like this diet or a detox diet to try and stop your chronic condition instead of just jumping into these sort of posts to make negative comments.

I decided several years ago that I would personally find my own method to beat these headaches. All my life doctors have told me, and I read plenty of articles, that say certain foods cause them, but never was able to isolate which ones. So I decided to stop eating any of these possibilities and see what happened. No Wheat, no Gluten, no Carbs, no Dairy, No Booze, no Coffee, no Sugar. Nothing except fresh fruit and Fresh Veg. It broke my cycle. I still don't know what causes CH for me. But I do know now that if I eat bread, pastry, junk foos and suchlike at what most people would consider "normal amounts" for long periods I start to get heartburn, headaches and feel sluggish. If I stop them this condition improves. For others it might be something else. But the only way you could possibly find out is to try it yourself, and if you really want to rid yourself of CH I would have thought that it was well worth the time and effort.

And - if you smoke how can you say it neither makes your CH more or less severe. you would need to give up for a reasonably long period before you can make this statement.

John

Title: Re: The Zone Diet/EPA Supplements, Other Questions
Post by crausman on Sep 7^th, 2006, 9:00pm

Thank you ALL! I had no idea this would spark such a lively discussion.

For the record, I am an addict: nicotine, caffeine, and I was hooked on alcohol until I had to quit it because of CH about 10 weeks ago. I miss my nightly beer. Caffeine is saving me, and I wouldn't dare quit the cigs. Someone wrote in that when they quit smoking it triggered some really bad hits. I'm sure that would happen to me as well, since I reacted VERY BADLY in the past, before CH, when I didn't get my nicotine.

As an aside, I drank green tea the last couple of nights, but, strangely enough, I had worse headaches. I thought it was supposed to help, but maybe it acts as a trigger with me.

Keep on writing.

Thank you!

Title: Re: The Zone Diet/EPA Supplements, Other Questions
Post by paulc on Sep 7^th, 2006, 9:26pm

on 09/07/06 at 16:46:03, jmorgan52 wrote:

I don''t have any problems when I eat all of the foods that you stopped eating and I don't have to take "Dr. Poop" to have normal bowel movements. I was in the hospital for a month a couple of years ago and didn't smoke and also didn't smoke for a couple of weeks after my discharge; my CH was just as bad. I do know that I do not eat much junk food, such as sugar or sugar based products and I stopped drinking alchohol years ago because I found that it made my CH pain worse. I do not personally know anyone who has CH, but those who do have it and continue to drink ETOH are causing themselves problems. If you or anyone else want to try various diets, go right ahead and if you REALLY BELIEVE that we carry around 10 lbs. of impacted fecal matter in our bowels at all times, then go ahead and spend $39.95 for "Poop Doctor" and become not only laxative addicted but also poorer because you can buy perfectly natural senna tablets, at about 1/10th the price, to help with your bowel movements. CH is caused by a defect in the hypothalamus and not by your bowels and unless you can prove to me, by showing me scientific literature that says otherwise-and I don't mean one article vs the vast body of knowledge that has been published about CH and its connection to the hypothalamus by reputable physicians, then I owe no one an apology. Many Ch people become desperate and will try anything to end the pain that it causes. There are people who are willing to take advantage of that desperation and take your money with pseudoscientific claims. If you want to eat a certain diet, go right ahead, I have no problem with that and if you want to take "Poop Doctor" and shit your brains out, I have no probem with that either; but if these methods REALLY work with CH pain then you would be seeing a LOT of articles published about it and a lot of docs prescribing the diet, which you don't. I feel no need to apologize to anyone for my beliefs. Hell, maybe a combination of your diet, "Poop Doctor" and compulsive masturbation (see the post on that) is all that we need to end the scourge of CH!

Title: Re: The Zone Diet/EPA Supplements, Other Questions
Post by Katherinecm on Sep 8^th, 2006, 12:17am

Thank you all for your help!

Title: Re: The Zone Diet/EPA Supplements, Other Questions
Post by jmorgan52 on Sep 8^th, 2006, 3:47am

PaulC

You are confusing me with someone else.

I have never taken poop Dr, never taken laxatives and never claimed anyone was carrying 10lbs of impacted fecal matter in our bowels at all times.

I advocate a fresh fruit, fresh veg and water diet for at least 1 week and up to 1 month or more. It may take episodics much less time to detox than a chronic.

For those who say they felt worse when giving up smoking or coffee or whatever - stick with it. Detoxing always seems to make you worse before it gets better!

What I am saying is that my method has fixed my CH problem for the past 3+ years now. It has reliably broken 2 cycles and help me avoid at least 2 more. 1 was in the middle of a full blown cycle when I was getting hit with kip 10's every few hours and the other was about 10 days into a bad cycle. The others were when I started to get daily headaches that were not bad enough to cause me to reach for the imitrex. Before a cycle I always have a month or so of these before the big ones come.

I say this to you Paul:
Don't knock it until you have tried it.
The results may not come as quick as they did for me.
Don't put your complete trust in science or medicine as they are financially motivated.
Anectodal evidence may not be your cup of tea, but when there is enough of it around then surely there must be an element of truth in it.
It may not work at all for some, but if your are genuinely looking for relief then surely it is worth hanging up your attitude and trying it!

I was once even told that I was addicted to headaches by someone who thought they were trying to help!

Title: Re: The Zone Diet/EPA Supplements, Other Questions
Post by hub on Sep 8^th, 2006, 6:20am

One thing I know for sure...true clusterheads don't even hang around this gay/lesbian/munchausenbyproxy/bipolar/multipersonalitydisorder/masturbating mofo message board...geez

Title: Re: The Zone Diet/EPA Supplements, Other Questions
Post by Bob P on Sep 8^th, 2006, 7:23am

Now you know why the signature line on my posts says what it says!

Title: Re: The Zone Diet/EPA Supplements, Other Question
Post by starlight on Sep 8^th, 2006, 9:49am

Hi. I haven't read all the way through this thread--I will in a minute. I just wanted to say that what I believe is that clusterheads may be more prone to addiction but I DO NOT believe smoking, drinking or anything like that causes cluster headaches. I swear I started getting these BEFORE I ever touched anything and have gone through years before of not touching cigs or alcohol--and I still got clusters.
Serotonin issues could contribute to addictive tendencies--not to mention chronic pain I believe has been shown to contribute to addictions for some.

Scientifically, if there are individuals who get these headaches BEFORE they have ever been exposed to alcohol, smoking etc. how in the world could that be a CAUSE. That is evidence to destroy the theory that smoking, alcohol causes these things.

Title: Re: The Zone Diet/EPA Supplements, Other Questions
Post by Margi on Sep 8^th, 2006, 10:19am

on 09/08/06 at 06:20:20, hub wrote:

One thing I know for sure...true clusterheads don't even hang around this gay/lesbian/munchausenbyproxy/bipolar/multipersonalitydisorder/masturbating mofo message board...geez

So....wait a minute....lemme do the math here. Hub, you have clusters....ergo.... YOU are a true clusterhead. I know you hang out here incognito a lot, too - you say you don't but I know you just can't help yourself. Like a bad car wreck, you just can't NOT watch, can you?

So...um...under which listed category do you fall? I'm thinkin...lesbian? Or do those tendancies only surface when you hang out with Bob too much? Or is it just that you've been spankin the monkey too much again, Charles?

Title: Re: The Zone Diet/EPA Supplements, Other Questions
Post by hub on Sep 8^th, 2006, 11:01am

I swear this is the first time I have visited in well over a year and it is just as pathetic as when I left...if you can't shoot imitrex in your pooniewacker you don't get clusters...so that leaves out a certain group around here doesn't it...

Title: Re: The Zone Diet/EPA Supplements, Other Questions
Post by Margi on Sep 8^th, 2006, 11:06am

on 09/08/06 at 11:01:49, hub wrote:

I swear this is the first time I have visited in well over a year ...

mmmhmmm....that's what they all say. You lil lurker, you.

Title: Re: The Zone Diet/EPA Supplements, Other Questions
Post by seasonalboomer on Sep 8^th, 2006, 11:09am

on 09/08/06 at 11:01:49, hub wrote:

full moon brings out all the trolls and lurkers.
go back in your hole.

Title: Re: The Zone Diet/EPA Supplements, Other Questions
Post by Margi on Sep 8^th, 2006, 11:15am

s'ok, Scott.... he's a lovable lil lurker.

Title: Re: The Zone Diet/EPA Supplements, Other Questions
Post by hub on Sep 8^th, 2006, 12:42pm

1400 posts...well you have a lot to say don't you...chump...

Title: Re: The Zone Diet/EPA Supplements, Other Questions
Post by seasonalboomer on Sep 8^th, 2006, 12:58pm

good to see you checked back in today to see if your previous posts stirred up any shit as you would have hoped. success. you've achieved your goal today! beers all around.

Title: Re: The Zone Diet/EPA Supplements, Other Questions
Post by Bob P on Sep 8^th, 2006, 1:17pm

Quote:

Scientifically, if there are individuals who get these headaches BEFORE they have ever been exposed to alcohol, smoking etc. how in the world could that be a CAUSE

Not saying that. We're saying that the same hypothalmic deformity that causes cluster headaches, causes a chemical imbalance in the brain that gives us addictive tendancies.

Smoking doesn't cause clusters but what causes clusters also causes smoking.

Quote:

if you can't shoot imitrex in your pooniewacker you don't get clusters...so that leaves out a certain group around here doesn't it...

I knew I loved you for some reason (and it wasn't cause you rubbed my leg in Atlanta either!)

Title: Re: The Zone Diet/EPA Supplements, Other Questions
Post by hub on Sep 8^th, 2006, 1:35pm

Just messin' with you seasonal...I contribute little cause I'm an idiot...ask Jonny, he never shot his pooniewacker but he used to stick indocine bullets in is butt, till it started getting the gerbils high...

Title: Re: The Zone Diet/EPA Supplements, Other Questions
Post by Linda_Howell on Sep 8^th, 2006, 1:48pm

Glad to see you back Hub, Bob has has been impossible to live with since you left.

Now where is Kack? and what have you done with him?

lol

Title: Re: The Zone Diet/EPA Supplements, Other Questions
Post by Katherinecm on Sep 8^th, 2006, 1:59pm

on 09/08/06 at 13:17:25, Bob P wrote:

Exactly! ;;D

Title: Re: The Zone Diet/EPA Supplements, Other Questions
Post by pattik on Sep 8^th, 2006, 2:19pm

Well, hello, Hub...and here I thought you were just a figment of Bob's imagination. ;;D

Title: Re: The Zone Diet/EPA Supplements, Other Questions
Post by starlight on Sep 8^th, 2006, 3:12pm

Bob, no argument with that.
But I know it has been tossed around here and like in tons of tons of places that there is a "link" between smoking and drinking and clusters.
I have no argument that whatever causes clusters can also give rise to addictive tendencies. But even with that....hmmm....we're walking on shaky ground. People are still trying to "figure out" what causes alcoholism--is it genes, is it brain chemistry, is it environmental? And smoking--man that stuff hooks anyone. And other drugs--well there's lots of people hooked on them.
I just want the docs to figure out WHAT f*cked up our hypothalamuses instead of I don't know making loose associations between things. Were we born with them messed up or did something causes it?
But I will admit that we probably do have addictive tendencies.

Title: Re: The Zone Diet/EPA Supplements, Other Questions
Post by starlight on Sep 8^th, 2006, 3:16pm

One more thing I just want to add: people could say that people who have learning disabilities are more prone to addiction (by the way I have NO idea if that's true but it could be). However, that won't tell us anything about what caused that person's learning disability. I totally apologize if i missed the point--I just don't think that the addiction thing is I don't know "tied in" as tightly as researchers are making it look like. Maybe I am looking at it the wrong way. If I am sorry.

Title: Re: The Zone Diet/EPA Supplements, Other Questions
Post by starlight on Sep 8^th, 2006, 3:30pm

Sorry to add on again: I am just not sure that I believe that cluster heads were born with deformity to hypothalamus. I think something may have caused it along the way--viral or head injury or other. How come hypothalamus works right for many years and then stops working right? And goes berserk on people at different ages? Not one specific age or decade of life? Why for some does it correct itself for months or years at a time only to go bersek again after that time is up? Why for some are chronic? So many questions--not enough answers out there from medical world. Not complaining just spinning my wheels.

Title: Re: The Zone Diet/EPA Supplements, Other Questions
Post by seasonalboomer on Sep 8^th, 2006, 3:36pm

on 09/08/06 at 15:30:08, starlight wrote:

How about we were born with a propensity for this overly dense matter to form in a part of our hypothalamus? Could be we were simply born with a fuse and some incident lit the fuse resulting in a "dodgy hypothalamajingy". That's my theory, as my Dad was also a sufferer. I have no basis for this connection but I think I nearly suffered heatstroke when I was in my 20's and that is what lit my fuse. And thus, my hypothalamus, which controls thermoregulation, goes on the fritz a couple of times a year. Kind of like I fried a couple of sensors which knocked the whole thing out of whack just that little bit. Maybe bullshit but it helps me place it into some kind of framework.

Scott

Title: Re: The Zone Diet/EPA Supplements, Other Questions
Post by Margi on Sep 8^th, 2006, 3:46pm

But this is Prof. Goadsby's whole theory, isn't it? That this is a condition present at birth. Are you, Starlight, disputing his years of research? Why doesn't head trauma/viral issues cause cluster headaches for everyone then? I agree with Goadsby's findings...that this is from birth and hormonal in nature, thus explaning the majority of activation at peak and low hormonal times in life. Circadian rhythm is also controlled by hypothalmus, so that explains seasonal activation. Of course, this doesn't explain why some people are chronic and some episodic, but chronics do have cycles within cycles. Perhaps chronics' "door" just stays open longer, I dunno. The only problem I have with the hormone thing is why young children get them.

Title: Re: The Zone Diet/EPA Supplements, Other Questions
Post by starlight on Sep 8^th, 2006, 4:59pm

Margi--

I think his theory is pretty convincing. Only weird thing is what first sets it off--hypothalamus first going berserk (why does it work well for a while?) and other stuff like how come it can change, morph? I think I am getting way too sci-fi with it. Anyway, don't really disagree with doc, but not sure I totally agree either--kind of on the fence. It never hurts to question. Take care, Star

Title: Re: The Zone Diet/EPA Supplements, Other Questions
Post by starlight on Sep 8^th, 2006, 5:14pm

Certain viruses like herpes virus/Epstein Barr and their ability to survive and resurface for years and years makes me wonder--could it maybe affect or perhaps prey on the hypothalamus for some people?
Seasonalbloomer--I totally believe that heatstroke set off that first episode for you.
Overheating triggered a cycle for me once. But was that the very first thing that affected the hypothalamus and made it weakened or what have you? Again it is just questions that I wonder.