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        New Message Board Archives >> 2003 Posts >> Still fishing,
        
(Message started by: bean on Dec 10^th, 2003, 10:28pm)

Title: Still fishing,
Post by bean on Dec 10^th, 2003, 10:28pm

Hello, sorry to keep up with the same old stuff,

Ive read in a couple of posts, people talk about "if A cluster wants to come, A cluster will come..." capital A. singular. Does anybody here who has been diagnosed w/cluster get them in the singular?

I mean, it does seem like there are subgroups to the general population, e.g. chronic, and episodal...

has anybody ever heard of any different type of headache that hurts as bad?

all I know is I used to get headaches that I KNOW hurt at least as bad as what yall describe, and since quitting eating the triggers, they have decreased to the point where im pretty much a normal person-civilian, you know?

and some of the arguments against the triggers are pretty weak, you know? "yeah, i eat all the stuff you list, and I STILL get clusters, what about that?" ummmm...

and the last thing, nobody has paid any attention to the trigger/promoter aspect. mabye not a sure fire instant trigger, but a promoter to an eventual bad headache/cluster instead. only in my teens do i remember anything instantly triggering anything, all the others were cumulative.

Title: Re: Still fishing,
Post by don on Dec 10^th, 2003, 10:31pm

Quote:

Still fishing,

But in the wrong pond ?

Title: Re: Still fishing,
Post by BlueMeanie on Dec 10^th, 2003, 10:35pm

Bean.

I can't stand it ! Gotta tell you again. A Cluster Headache is like no other you will ever know. Triggers or no triggers, a Cluster will come when it's ready. Like it or not. I really don't think you get Clusters. I'm not doubting your pain, but a Cluster is very unique pain that is undiscribable to anyone who has not had one. And there is no such thing as a singular Cluster that I am aware of.

Title: Re: Still fishing,
Post by don on Dec 10^th, 2003, 10:40pm

Bye the way. Love that email address.

Title: Re: Still fishing,
Post by bean on Dec 10^th, 2003, 10:54pm

on 12/10/03 at 22:35:25, BlueMeanie wrote:

thats my point, this is the only website devoted to a headache that occurs in one eye, wakes you from sleep, and feels like a knife is jabbed in your eye! I used to think that too, about it coming when it wants, but im being forced to change my opinion since i havent had one in so long. try the list! ;;D im going to sleep! ;;D[smiley=thumbsup.gif][smiley=thumbsup.gif]

Title: Re: Still fishing,
Post by don on Dec 10^th, 2003, 11:09pm

Quote:

since i havent had one in so long.

Or at all. You know there are hundreds of good Migriane support sites out there. I'd give you a link but I dont have any. Can anybody help this guy out with that?

Nothing you decribe points to Cluster except your headache is painful.

Title: Re: Still fishing,
Post by pubgirl on Dec 11^th, 2003, 2:49am

Bean

Like Don, I haven't seen anything in what you post that makes me definitely think you have clusters. Pray you don't!
I'm not trying to patronise here as when I had my first migraine, I thought the pain was beyond bearable and really believed I was having a brain haemorrhage. It was on one side, sometimes behind the eye, and sometimes woke me from sleep and the eye on that side poured water. That is about where the similarities with CH end.
It was only when I developed clusters that I truly knew the difference.

There are quite a few good links on this site - headache link button on your left (including the headache support group often mentioned)
but a good place to start is probably

http://www.headaches.org/

Wendy

Title: Re: Still fishing,
Post by Paigelle on Dec 11^th, 2003, 8:04am

Arrrgghhhh! A cluster headache or cycle comes whenever it damn well pleases. Triggers are useless for an episodic, unless they are in cycle. If in cycle, then maybe there are some triggers.

Title: Re: Still fishing,
Post by OneEyeBlind on Dec 11^th, 2003, 8:14am

Triggers ? Yea, I got one while in cycle. Sleep. That's it. When out of cycle sleep does not bring on a headache, while in cycle ... even a nap brings on a cluster !

Title: Re: Still fishing,
Post by jmorgan52 on Dec 11^th, 2003, 8:27am

Hi Mr Bean

I am 52, and have had these HAs for as long as I can remember, even as a child. They have always come in very large bunches (that's why they are called "clusters") and then usually go way for a long period of at least a year.

If you are only getting a few a year then IMHO they are probably migraines. I get them too once in a while, and the symptoms are very similar to the CH (for me) with intense pain in one side behind the eye, one eye and nostril tearing. It may well be related to CH, except that they are usually much less frequent and the pain is more of a throbbing pain than the steady pain of the CH.

Don't underestimate the pain of a migraine though. They can be extremely painful and totally debilitating and is just as unpleasant as a CH!. Those on this site who mock migrainers pain as insignificant compared to their own should be a bit more compassionate :o

I do however agree that eating stuff that may be wrong for us (and this may be very different betwen individuals) over a long period might be the possible cause of CH. This theory is very different from the "triggers" that rapidly set off a CH when in cycle, like alchohol which is common to many here. Finding out which foods to avoid to prevent the cycle starting is the magic trick, and it is a very difficult one to master and maintain long term.

I believe (rightly or wrongly) that eating the wrong food (for the particular individual) for a year or more is enough to trigger a cycle. The cycle probably ends when enough of whatever toxins are causing the CH in the first place have been eliminated by the body until they build up again in a year or so.

The only alternative to really trying hard to find out what these foods or additives are and eliminate them from the diet is drugs, drugs and more drugs to try and manage the situation. This is more harmful than all the junk we eat!

Many here even brag or joke about how much booze, coffee, cigs, burgers, and fast food they consume without any consideration to what it is doing to their health.

Flame away! ;;D

John

Title: Re: Still fishing,
Post by Patrick_A on Dec 11^th, 2003, 8:50am

Shit man, I can pop a couple of Excedrin PM's and go right to sleep with a Migraine. Migraines to me are extreme headaches that are a huge inconvenience. CH's on the other hand hurt so bad i not only cannot sleep, No pain relief drug will even touch them.
Migraines are like jumping off the 2nd step on your porch, CH's are like jumping off the Empire State building.
When i am Imitrex free, I get singular daily CH's. Yea, maybe i am one of the lucky ones, and if that is true then i am thankful, because i have had multiples per day and that is disabling.
Just my 2 cents,

Patrick :)

Title: Re: Still fishing,
Post by Paigelle on Dec 11^th, 2003, 9:12am

I have migraines and CH. I would rather deal with a migraine anyday. When I am not in cycle I will complain if I get a migraine, but then I remember what the CH is like and I don't complain anymore. But I can take Excedrin or Midrin or sometimes nothing at all and sleep it off. If it is a really bad one and I get sick with it, when I puke the migraine is gone. With CH if you puke, you hurt worse.

Migraines do suck! I feel for people who suffer from them. But I would still rather have ten migraines compared to one CH.

Title: Re: Still fishing,
Post by jmorgan52 on Dec 11^th, 2003, 9:52am

Hi Patrick

For me migraines are like jumping off at least the 2nd floor, not the 2nd step! I do agree a bad CH is like jumping off the empire state :)

But... when a really bad migraine reaches day 2 or 3 with no relief I can tell you it is no walk in the park. I am unable to work, think or function and OTC stuff does not touch them for me. I usually end up using some of my valuable stash of Imigran injections to kill it when I cannot take it any more.

The CH pukers are definately the worst though!

Title: Re: Still fishing,
Post by Patrick_A on Dec 11^th, 2003, 11:20am

on 12/11/03 at 09:52:50, jmorgan52 wrote:

Hey Jm, Yea bro, It was just my comparison, but i rarely get a Migraine that causes me to scream in pain. Most of the time i can sleep one off. I am sure if all i got was migraines, and i had nothing else to compare it to ( CH ), then i am sure i wouldnt agree with what i just said! Pain sux, it dont matter what it is. But you know as well as i do, Once you have experienced a true CH. It exceeds all other pains in your life!

Patrick :)

Title: Re: Still fishing,
Post by bean on Dec 11^th, 2003, 2:08pm

on 12/11/03 at 08:27:28, jmorgan52 wrote:

Hi Mr Bean
If you are only getting a few a year then IMHO they are probably migraines. I get them too once in a while, and the symptoms are very similar to the CH (for me) with intense pain in one side behind the eye, one eye and nostril tearing. It may well be related to CH, except that they are usually much less frequent and the pain is more of a throbbing pain than the steady pain of the CH.

Don't underestimate the pain of a migraine though. They can be extremely painful and totally debilitating and is just as unpleasant as a CH!. Those on this site who mock migrainers pain as insignificant compared to their own should be a bit more compassionate :o

I do however agree that eating stuff that may be wrong for us (and this may be very different betwen individuals) over a long period might be the possible cause of CH. This theory is very different from the "triggers" that rapidly set off a CH when in cycle, like alchohol which is common to many here. Finding out which foods to avoid to prevent the cycle starting is the magic trick, and it is a very difficult one to master and maintain long term.

I believe (rightly or wrongly) that eating the wrong food (for the particular individual) for a year or more is enough to trigger a cycle. The cycle probably ends when enough of whatever toxins are causing the CH in the first place have been eliminated by the body until they build up again in a year or so.

The only alternative to really trying hard to find out what these foods or additives are and eliminate them from the diet is drugs, drugs and more drugs to try and manage the situation. This is more harmful than all the junk we eat!

Many here even brag or joke about how much booze, coffee, cigs, burgers, and fast food they consume without any consideration to what it is doing to their health.

Flame away! ;;D

John

length of headache
« on: Dec 7th, 2003, 4:57pm » Quote Modify Remove

--------------------------------------------------------------------------------
Ok , one more.

diagnosed clusterers,

and i still challenge anyone to give up the following list for a year, and see if your headaches dont just go away like mine did.(hopefully+fingers crossed)

1. Soy sauce--(miso, tamari, shoyu, fish sauce, etc.)

2. MSG-- monosodium glutamate--the only other name I have seen it listed under is L-glutamic acid one time on a pizza.

3.tobacco- this even includes smokey rooms and bars, clubs, etc.

4.chocolate-

5.coffee-

6.soda pop with caffiene and/or brown coloring, just to be safe- only orange soda and sprite and the like- YUM!

7.alcohol-

8.tea-

9. sharp cheddar cheese, gorgonzola, bleu, etc. --the gorg and bleu can be eaten every once in a while, and parmigon is just to prevalent and not even the real stuff to worry about.

10.stress

this, to me is a pretty complete list except for saurkraut and pickles

and the last thing, nobody has paid any attention to the trigger/promoter aspect. mabye not a sure fire instant trigger, but a promoter to an eventual bad headache/cluster instead. only in my teens do i remember anything instantly triggering anything, all the others were cumulative.

PUBGIRL:"sometimes behind the eye"--mine are always

*******PAIGELLE- do you ever get shadows with your migranes?*********
Or anybody else?

Keep up the good fight folks, Im almost convinced they might be migranes. But then the migrane/cluster pain debate would be null. my headaches are the worst pain by a factor of ten that ive ever experienced. the thought of anything ever hurting as bad is kind of a joke.

PEACE IN YOUR MIDDLE EAST!

Title: Re: Still fishing,
Post by Cluster_head on Dec 11^th, 2003, 2:14pm

on 12/10/03 at 22:28:11, bean wrote:

Does anybody here who has been diagnosed w/cluster get them in the singular?

I've been an episodic sufferer for over twenty years. Diagnosed about 10 or 15 years ago. Although my cycles are normally about two months in duration, I have had at least one cycle that was a single headache.

It was several years ago and only happened once. And yes, it was a cluster. Unfortunately I've had several attacks/clusters to compare it to.

I wish all of my cycles were in the singular, but it normally doesn't happen that way for me.

Title: Re: Still fishing,
Post by jonny on Dec 11^th, 2003, 3:50pm

hell, I can get one HA and go 10 days before I get another one and im 29 yrs chronic.

..........................jonny....Im special....LOL ;;D

Title: Re: Still fishing,
Post by cathy on Dec 11^th, 2003, 4:00pm

Mr Bean, it's your hypothalmus thingamejiggy thats the problem...just so you know. ;;D

As for singular CH ....yes Wes's very first cycle was 1 headache on a sunday at 10am for 4 weeks then wham!!! Hope you don't turn out to have clusters.

Cathy

Title: Re: Still fishing,
Post by BobG on Dec 11^th, 2003, 4:12pm

Quote:

10.stress

IMHO, be stress free and you're going to get nailed.

Smoking, what about those that have never smoked anything at any time in their life yet still suffer clusters?
And those that do smoke have periods of remission and continue to smoke? IMHO smoking has NOTHING to do with clusters, good or bad.

Title: Re: Still fishing,
Post by bean on Dec 11^th, 2003, 7:43pm

and the last thing, nobody has paid any attention to the trigger/promoter aspect. mabye not a sure fire instant trigger, but a promoter to an eventual bad headache/cluster instead. only in my teens do i remember anything instantly triggering anything, all the others were cumulative

its an all or nothing thing. any thing on the list counts as much as anything else. at least from my experience. and clubbing and bars definately count as smoking even being in the same room with a bunch of smokers.

Title: Re: Still fishing,
Post by jmorgan52 on Dec 12^th, 2003, 1:58am

Cathy - Hi from one expat Brit to another Brit.

I don't really buy the "it's your hypothalmus thingamejiggy thats the problem" in it's entirety. I accept that this may well be the cause of the pain. But.... what causes the hypothalmus thingamejiggy to get out of whack in the first place? Could it be partly attributed to incorrect diet and the toxins they cause. Food for thought?

Sorry BobG but smoking causes so many health problems from the lungs, to the heart, to just about all the other parts of the body that I fail to see how it can be discounted as a possible contributer to CH. That fact that many do not smoke (like me) is irrelevant IMHO.

As for me I have been fairly stressed for most of my life. When I decided to try and give up wheat products about 20 months ago because I had figured out that they were maybe the cause of CH (for me, not neccesarily others) I found that I also became pretty much stress free and generally healthier as a side effect. I have not had a single sick day during this period.

I have fallen off the wagon in the past few months in terms of eating a little bread, pizza, cookies, cakes and such like. It is hard for me to give up these comfort foods, and when you are PF you feel invicible. As a consequence (I think) I started to get some mild daily HA's and shadows about 3 weeks ago. I was getting them 2 or 3 times a day at 11am, 2pm, 7pm. They are always over my right eye and have the same characteristic feel as a CH but are only about a kip 3 at most. OTC controls them so far. A very mild cycle so far.

On Monday this week I started a 1 week detox diet. NO WHEAT, Lots of water, my detox mixture (Bepure), lots of fresh fruit and veg, some nuts and nothing else. I plan to add some chicken and fish from today. No coffee, no alchohol, no painkillers. Its Friday now and I feel pretty good. Mon I had a shadow on and off all day, Tues much the same but a bit milder. Weds I had one about 2pm but it was quiet bearable less than Kip 2. Last night went to movies and had a very mild Kip 1 shadow at 9pm which lasted about 20 mins.

I am hoping to break this cycle, mild as it is so far, and try and be totally PF, so that I can enjoy the Christmas holidays. I hope to be drinking plenty of Alchohol, eating lots (no wheat) and partying hard instead of spending it worrying that I will set off a CH by having a beer at noon like I did a few years ago with a bad cycle this time of year.

I will keep you posted on the progress.

Cheers
John

Title: Re: Still fishing,
Post by BobG on Dec 12^th, 2003, 12:55pm

Quote:

But.... what causes the hypothalmus thingamejiggy to get out of whack in the first place? Could it be partly attributed to incorrect diet and the toxins they cause. Food for thought?

Incorrect diet? Nope.........you were born that way. Your ancestors gave you bad DNA.

Quote:

but smoking causes so many health problems from the lungs, to the heart, to just about all the other parts of the body

You are correct. But, as far as clusters is concerned, IMHO, smoking does not contribute good or bad.

P.S. Before you ask, Yes I am a smoker. I think all smokers should quit. It stinks, is expensive and just plain bad for you. Someday I'm going to start thinking about quitting. But not today.

Title: Re: Still fishing,
Post by brain_cramps on Dec 12^th, 2003, 2:30pm

on 12/12/03 at 12:55:14, BobG wrote:

...You are correct. But, as far as clusters is concerned, IMHO, smoking does not contribute good or bad...

I think that smoking DOES have an adverse effect simply because of how it limits the oxygen in the bloodstream and, as we all know, oxygen is helpful for the vast majority of clusterheads.

Just my .02 worth,
grant

Title: Re: Still fishing,
Post by Mac on Dec 12^th, 2003, 2:30pm

jmorgan52, I have never heard of wheat as a trigger for Ch's. I'm not doubting you at all but have you ever been checked for celiac disease? A buddy of mine is extremely alergic to glutens in bread and in any products that use regular flour. Just a thought :)

Title: Re: Still fishing,
Post by bean on Dec 12^th, 2003, 4:15pm

on 12/12/03 at 01:58:53, jmorgan52 wrote:

what is the deal with this hypothalmus thing? Ive heard of it, but not that it is related to CH in any way. Any good links to actual documantation & the like? Any research projects around the globe?

Is/are there anyone doing research/experiments or whatever anywhere?

*********************
Quote:but smoking causes so many health problems from the lungs, to the heart, to just about all the other parts of the body

*****************
BOB G>
You are correct. But, as far as clusters is concerned, IMHO, smoking does not contribute good or bad.

*********************
It contributes to my headaches. Fuck all the other stuff, if you do or do not want to, that will catch up with you in time. health, etc.

Sorry for the hard to follow quotes.

Title: Re: Still fishing,
Post by bean on Dec 12^th, 2003, 4:18pm

on 12/12/03 at 14:30:21, brain_cramps wrote:

if it did/does, I think it might be something actually in the smoke. weed never triggered anything for me. BTW, crack was a euphamism for triggers/promoters. [smiley=headbanger.gif]

Title: Re: Still fishing,
Post by Cerberus on Dec 12^th, 2003, 8:31pm

Episodic here.......and a smoker of .....uh....smoke (hehe) ;;D

In my own experience not a whole lot of triggers, cept fer alcohol and maybe drastic teperature or pressure changes (odd I know). Smoking never seemed to have an effect either way, weed nor cigs.

Go figure, it hurts equally as bad.

Ramon

Title: Re: Still fishing,
Post by brain_cramps on Dec 12^th, 2003, 8:35pm

on 12/12/03 at 16:18:05, bean wrote:

...BTW, crack was a euphamism for triggers/promoters.

WTF??

Title: Re: Still fishing,
Post by Charlie on Dec 12^th, 2003, 10:11pm

One thing that does sound like CH to me is that these headaches wake you up. CH always does. I’m not sure others do.

IMHO: Looking for triggers is fine so long as one doesn't go overboard as I think you have. I do believe alcohol is a trigger. Most of us have bad experiences with it. That far too many "triggers" seem to apply only during cycles is a problem for me.

Smoking is interesting. Members of this board admit to smoking at about twice the national average but that reflects the board only and certainly not the national CH population. It wouldn’t surprise me to find that smoking and some other bad habits are sometimes a result rather than the cause of CH. There’s no definite proof for tobacco. While I quit smoking in 1980, my CH lasted until 1991. The timing is wrong in my case. Since 1991 I have been free of this horror and the only difference in my behavior is that I drink more than twice the coffee than before and that I’m a bit more nocturnal. The most significant thing may be than I’m 57 years old.

I doubt that entering or even staying in a smoke-filled room is very dangerous. It stinks like hell and having to run all my clothes through the washer every time I get home is a pain in the ass but it’s just not the same thing as smoking. I never argue this because I hate it so much and that everyone is so health conscious helps me and others in the smoking Gestapo.

Good luck and I truly hope CH isn’t your problem.

Charlie

Title: Re: Still fishing,
Post by bean on Dec 13^th, 2003, 10:03pm

on 12/12/03 at 20:35:57, brain_cramps wrote:

WTF??

wasnt it you that admonished me for my illicit "crack" use? Doesnt matter...