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(Message started by: susandy on Sep 9th, 2004, 9:21pm)
Title: Cause & Treatment, What I Learned
Post by susandy on Sep 9th, 2004, 9:21pm
Every time I hear about someone suffering from cluster headaches I am overwhelmed by a kind of panic because I know that many could be helped by what I have learned but I have no way of reaching these people.  I am not a doctor.  For those of you still looking to your doctor for answers, read no farther.

My first cluster was in January 1976.  I don't want to count up the years putting everything on hold while I devote every moment of every day to suffering, avoiding, dreading.

But I kept logs, I paid attention, I ruled out theories one by one.  And now I know, absolutely, what causes this miserable condition in ME.  I have not been able to stop the clusters but I have been able to greatly lessen the pain and I still have hopes of avoiding them altogether.  For all I know there are wildly different causes of this condition but I know there must be others out there who actually have the same problem that I do.

Probably no one would want to plow through the process I used to determine what causes this and what to do about it.  But it is not just an idle guess.  So here is what I know.

SEE PART TWO
Title: Re: Cause & Treatment, What I Learned
Post by susandy on Sep 9th, 2004, 9:23pm
PART TWO...
This is a strictly mechanical problem.  It is caused by a leak in the sublinqual saliva gland.  Saliva actually leaks onto the trigeminal nerve.  I can talk about how this comes to happen latter.  When the sufferer is sufficiently dehydrated so that saliva production slows to almost nothing, the pain stops.  When the leak (rupture in the gland) is repaired, the cluster stops.  This takes five to six weeks and can go on longer if the rupture is not repaired by the body.  An additional complication is that sometimes an infection sets in in the saliva gland.  This can be detected by a bitter taste in the mouth.  You are tasting pus.

For at least 15 years my clusters alternated but it has been many years since this has stopped.  I only have them on one side now.  I believe this is because the other side healed up giving me great hope that the still effected side will heal also.

Explaining in writing what to do is a challenge.  But first, the PAIN.  Use Ice.  Specifically, put ice in a ziplock bag with some water so that you are using ice water.  Use this in the jaw hinge area.  I'm sure that many people already do this.  If you are in a hurry, use frozen vegetables or a can of frozen juice mix works pretty well.

Next, the idea is to stop the flow of saliva out of the gland down your neck...the wrong way.  

This is done by assuming a position I am sure many are aware of.  Neck extended slightly, pain side tilted down a little, slack jawed.  Use your thumb or the knuckle of your index finger (wish I could draw, should I make a series of photos?) to gently support the saliva gland, pushing up and away from the esophagus, toward the ear.

Next, get rid of the saliva.  Your body can produce an incredible amount if you are well hydrated.  My kids call me the Queen of Drool.  It is important here to discuss why this thing is happening in the first place.  You may have either an inferior, that is too small, duct or you may have a stone in your saliva gland, very common, or you may have both.  So at first the saliva may not come out at all.  This just makes things worse of course.

So dilate the duct, there is just one, by using something that makes you salivate.  I use chocolate as the most reliable.  The duct is located near back of your bottom teeth under the jaw line.  On the outside of your face feel for the place in you bottom jaw where there is an indentation in the bone.  By just touching the skin there you will feel the saliva come out if you are in the right position, supporting the gland, jaw loose, and have stimulated the saliva production with candy or some such.  Touch and release, repeat.  In other words, gently tap that spot where the dent in the jaw is.

Don't close you mouth.  A supply of tissue is necessary.  Drool on the paper.  If you are doing this correctly you will know because you will feel some fleeting relief.

PREVENTION
You know that feeling.  A little zing up the cheek bone or in the ear.  You may be in for a cluster.  Sometimes it comes and sometimes it doesn't.  If you only knew why maybe you could avoid the cluster.

This is caused by a distension of the saliva gland.  It is full and the saliva can't get out.  It bulges.  Get going on supporting and emptying the gland.  Be very careful for a few days.  Support the gland with your hand when you rise from a chair, turn to look over your shoulder while driving etc.  Sleep on the 'bad' side, support the gland with a rolled wash cloth.  You will be able to feel when you are doing this correctly.  It takes practice.

You are doing all of this to avoid a rupture which will result in a cluster.  Once ruptured you are in for the full length of the cluster.  HOWEVER, you will be amazed at much more bearable the pain becomes when you have some control over it.  I am not suggesting that you will no longer have excruciating pain, just less panic.

Why does a cluster so often follow a cold?

The short answer is coughing.  Be sure to support the gland while coughing.

During Cluster Season I keep a basket ( an old Easter basket) with these things with me all the time.  It makes it easier to move from room to room and to find in the middle of the night.

A roll of toilet paper
M & Ms (the miniature ones in a tube are very handy)
A clean dry wash cloth
A small 'blue ice'.  I have several ready to go in the freezer.  Put a fresh one in the basket before going to sleep....OK, or trying to go to sleep.

You can't go without water but you can go to bed slightly dehydrated.  Eat something salty late in the evening.  Get some rest, re-hydrate in the morning and then be very careful.  Sleep deprivation is one of the worst things about the clusters.  Notice I did not say THE worst thing.

Anything that dehydrates you (cafergot, exercise) will SEEM to help.  This is a clue.

SEE PART THREE
Title: Re: Cause & Treatment, What I Learned
Post by susandy on Sep 9th, 2004, 9:24pm
PART THREE........
That's it basically.  Of course it takes trail and error and practice etc. to find the exact position that works for you.  For the record, I have tried all of the medications but not oxygen.  Nothing worked except Halcion, but it is pretty scary and did nothing to shorten the cluster or prevent it and in the years I used it I always got an infection.  My doctor welcomed me to drive across town and use oxygen in his office the next time I had a cluster headache.

An ENT told me that the gland can be removed.  But first they have to test to rule out a tumor by inflating the gland.  I have not had the guts to pursue this.  The thought of setting off a cluster on purpose goes beyond my ability to cope.  The surgery also carries some risk of facial paralysis.

This is my time of year and the first cold just came home from school, so wish me luck.  Maybe this will be the year I don't have a cluster at all......Sorry, there is NO smiley assuming the correct position.
Title: Re: Cause & Treatment, What I Learned
Post by IndianaJohn on Sep 9th, 2004, 9:29pm
When I get dehydrated my CH's get much worse.
Title: Re: Cause & Treatment, What I Learned
Post by farmboy on Sep 9th, 2004, 9:43pm
Get dehydrated........get hit.

i drink a lot when in cycle and it seems to lessen the severity of the attacks.
Title: Re: Cause & Treatment, What I Learned
Post by unsolved1 on Sep 9th, 2004, 10:36pm
I'm glad you figured it out.
Title: Re: Cause & Treatment, What I Learned
Post by Ueli on Sep 9th, 2004, 11:21pm

Quote:
Saliva actually leaks onto the trigeminal nerve.

Susandy, are you coming from down under? In the northern hemisphere the trigeminal nerve is above the salvia gland, so your mechanism doesn't work for me. :-[
Title: Re: Cause & Treatment, What I Learned
Post by clarence on Sep 10th, 2004, 4:28am

on 09/09/04 at 21:24:29, susandy wrote:
An ENT told me that the gland can be removed.


Aren't Ent's the tree shepherds in Tolkein's Lord of the Rings?  Didn't know they were knowledgable in these issues... ;;D

Actually, I think I've read this before...deja vu?

Casey
Title: Re: Cause & Treatment, What I Learned
Post by pubgirl on Sep 10th, 2004, 5:13am
Biggest load of badgerwank I have ever heard in all my years here.
Title: Re: Cause & Treatment, What I Learned
Post by Kevin_M on Sep 10th, 2004, 5:43am

on 09/09/04 at 23:21:42, Ueli wrote:
the trigeminal nerve is above the salvia gland,


I got   [smiley=huh.gif]   on that one too.



Quote:
(susandy) When the sufferer is sufficiently dehydrated so that saliva production slows to almost nothing, the pain stops.
   Oh,  ????


Quote:
(susandy) You may have either an inferior, that is too small, duct or you may have a stone in your saliva gland, very common, or you may have both

Oh,   ????


Kevin M
Title: Re: Cause & Treatment, What I Learned
Post by karma on Sep 10th, 2004, 6:45am
Dehydration,Salt and Chocolate
All are known to be aggravators or triggers.
I know I should ignore this but What the hell!
Title: Re: Cause & Treatment, What I Learned
Post by Jeepgun on Sep 10th, 2004, 7:24am
I have the same problem, but it's usually caused by DSB: The "Dreaded Sperm Build-up." See, what happens when I don't get uh.... "milked" on a regular schedule, is that the sperm builds up until it FLOODS my trigeminal nerve, and then it causes excrutiating pain. It's simply horrible. No matter how many times I explain this to my "significant other," I don't seem to get much sympathy or assistance, so I end up having to take matters firmly into my own hands. This results in a huge mess that can generally only be cleaned up with copious amuonts of tissues, paper towels, sponges, old t-shirts, etc. but I am very environmentally conscious, and I generally save up those cum-sponges, keep them as pets, and give them endearing names like "Susandy," and then turn them loose to post on clusterheadaches.com
Title: Re: Cause & Treatment, What I Learned
Post by BobG on Sep 10th, 2004, 7:27am
ROTFLMAO  [smiley=crackup.gif] Congratulations Susandy. This has got to be the best one ever. I laughed so hard I almost salivated on my own trigeminal nerve.

My favorite part

Quote:
So dilate the duct, there is just one, by using something that makes you salivate.  I use chocolate as the most reliable.
I use duct tape. Stick it on and rip it off. It’ll dilate the hell outa your duct.
And, if you can’t poop, try it on your butt hole.

De jou vue! (sp?) Just the other night my wife and I were being ‘friendly’. She looked into my eyes and said

Quote:
Get going on supporting and emptying the gland


And always remember guys…….

Quote:
Be sure to support the gland while coughing.  


;;D [smiley=laugh.gif] ;) [smiley=laugh.gif]
Title: Re: Cause & Treatment, What I Learned
Post by floridian on Sep 10th, 2004, 8:34am
Jeepgun, dude!  You need to work things out with your significant other.  Regularity reduces your risk of prostate cancer.  Plus it keeps the pressure off your trigeminal salivary plexus and the beast will just walk away from you. Oops, there is no trigeminal plexus.  But regularity is indeed good :)


Quote:
Once a day keeps prostate cancer away?
Study: Frequent ejaculations may protect against disease

Sexual activity does not cause prostate cancer, and men who ejaculate frequently may even be protecting themselves against the disease, U.S. researchers reported on Tuesday.

Full article at:
http://www.msnbc.msn.com/id/4676076/
Title: Re: Cause & Treatment, What I Learned
Post by don on Sep 10th, 2004, 9:00am

Quote:
You are tasting pus.


One line in a 3 part post I can agree with.

So lets get to the point Sandy. Is it swallow or spit?
Title: Re: Cause & Treatment, What I Learned
Post by Jeepgun on Sep 10th, 2004, 9:24am
*shooting a big white stream right in Susandy's eye.* "Oh, did that cause you to have a cluster headache? Oh sweetie... I'm so fucking sorry.... Let me go get you a towelette or something..."

Fawker....
>:( ;;D
Title: Re: Cause & Treatment, What I Learned
Post by nani on Sep 10th, 2004, 9:28am
Whoa - all this dirty talk is giving me a headache. It must not be a cluster though - I haven't had any liquids in 7 days...
Title: Re: Cause & Treatment, What I Learned
Post by pubgirl on Sep 10th, 2004, 9:30am
Now Jeep
That was crude ;;D

Wendy
Title: Re: Cause & Treatment, What I Learned
Post by ExplodingEyeBall on Sep 10th, 2004, 9:36am

on 09/10/04 at 09:28:14, nani wrote:
Whoa - all this dirty talk is giving me a headache....


It's giving me a......... Oh.... Never mind.
Title: Re: Cause & Treatment, What I Learned
Post by Jeepgun on Sep 10th, 2004, 10:02am

on 09/10/04 at 09:30:08, pubgirl wrote:
Now Jeep
That was crude ;;D

Wendy



Thank you! Thank you very much! *bowing* (and blushing) You flatterer, you!  ;;D :-*
Title: Re: Cause & Treatment, What I Learned
Post by Gator on Sep 10th, 2004, 12:28pm
I don't know what you have been dealing with, but as for CH, there is a link to the left entitled "water X3."  Hydration has been for most people a good thing.  Most people find that when they are insufficiently hydrated, they get attacked more frequently.  I know I do.

In CH, the primary pain is not in the jaw, it is in and around the eye and can extend into the temple, jaw, occipital area, neck and shoulder of the affected side.  Yes it has been known to switch sides, I have even experienced attacks on the opposite side, but it is uncommon for the pain to switch sides as frequently as you seem to indicate.  

Your contention that this is strictly a mechanical problem should be of interest to Dr. Goadsby, Dr. Kudrow and the others who are researching to find the cure.  These world renown doctors were under the mistaken assumption, after years of intensive research, that the problem lies in the fact that people with CH have an enlarged hypothalamus on the affected side.  Experimentation with Hypothalamic Stimulation, in which electrodes are placed on each side of the hypothalamus and an electric current applied, has stopped the ch in test subjects.  The subjects remained pain free until the current was removed.  This seems to indicate that while they do not yet know the mechanism within the hypothalamus that causes the pain, they do at least have the right target in their sights.

Assuming you actually have CH, if halcion did anything for you, I dare say it was the drug regulating your sleep that actually helped as screwed up sleep is a major issue in CH.  If cafergot helped you, I'm sure it was less any dehyration effect and more the fact that cafergot contains ergotamine, which is a vasoconstrictor.  Vasoconstrictors are the primary weapon CHers use to abort attacks.  And yes, ice is known to help a good number of people.

Most people that have suffered from CH for a long time have tried different things and found "magic cures" which were dashed on the rocks when they realized that the finding of their cure actually just coincided with the end of their cycle.  I wish for you the best and good luck in finding your "cure."  I would, however, recommend you read the links to the left and the information on the OUCH website.  


Gator
Title: Re: Cause & Treatment, What I Learned
Post by Lizzie2 on Sep 10th, 2004, 12:51pm
This is from a very reliable patient education source on causes of clusters.


Quote:
WHAT CAUSES CLUSTER HEADACHES?

Cluster headaches, like migraines, are likely due to an interaction of abnormalities in the blood vessels and nerves that affect regions in the face.
Abnormalities in the Hypothalamus

Evidence now strongly suggests that abnormalities in the hypothalamus, a complex structure located deep in the brain, may play a major role in cluster headaches. Advanced imaging techniques have revealed that a specific area in the hypothalamus is asymmetrical in these patients and is activated during a cluster headache attack.

The hypothalamus is involved in the regulation of many important chemicals and nerve pathways, including the following:
Nerve clusters that regulate the body's biologic rhythms (its circadian rhythms).



Serotonin and norepinephrine. These are neurotransmitters (chemical messengers in the brain) that are involved with well being and appetite.
Cortisol (stress hormones).
Melatonin (a hormone related to the body's response to light and dark).
Beta-endorphins (substances that modulate pain).

Circadian Abnormalities. Cluster attacks often occur during specific sleep stages. They also often follow the seasonal increase in warmth and light, beginning in summer and ending in the fall. Researchers have therefore focused attention on circadian rhythms, and in particular small clusters of nerves in the hypothalamus that act like biologic clocks.

The most important nervous cluster is the suprachiasmatic nuclei (SCN), which appears to help coordinate the body's activities (sleep/wake) with the environment (dark/light). Some studies support the idea that some failure in this biologic pacemaker may impair the pain control system and cause these terrible attacks.

The hormone melatonin is also involved in the body's biologic rhythms.

Alterations in Serotonin. The brain chemical serotonin is of particular interest in the study of headaches, particularly migraine and cluster headaches. This neurotransmitter (chemical messenger) affects, among other functions, well being, sleep, and appetite. Some research has also suggested that serotonin may play an important role in the way circadian rhythms are expressed. There is some evidence of abnormal regulation of brain serotonin levels in cluster patients (although it is not as pronounced as in migraine patients).
Dilation of Blood Vessels

Cluster headaches are associated with dilation (widening) of blood vessels and inflammation of nerves behind the eye.


In both cluster and migraine headaches blood vessels dilate, but in cluster headaches only the blood vessels behind the eyes pulsate. What causes these events and how they relate to cluster headaches are still unclear:
Because blood vessel dilation appears to follow, not precede, the pain, some action originating in the brain is likely to be part of the primary process.
Some experts believe that at least some of the pain is caused by dilation in branches of the carotid artery (a major artery that supplies the brain with blood).
Certain substances, such as histamine and a protein called endothelin-1 that widens blood vessels and are being investigated for a possible role in cluster headaches.
Other Factors

Nitric Oxide. Nitric oxide is a small molecular messenger that activates nerve pathways in the brain, muscles, or elsewhere. It may contribute to major primary headaches (tension-type, cluster, and migraines) by specifically triggering inflammation and overactivity in the trigeminal nerves. (This is a major nerve pathway that runs from the brain stem to the head and face.) However, other factors must be present that make cluster headache patients susceptible to the actions of nitric oxide.

Immune Abnormalities. Researchers are also investigating whether over-production of certain immune factors called cytokines may contribute to cluster headaches. Cytokines, such as interleukins, are known to cause inflammation and injury in high amounts. To date, however, there is no evidence that they play any role.

Abnormalities in the Sympathetic Nervous System. Some evidence suggests that abnormalities in the sympathetic (also called autonomic) nervous system may contribute to cluster headaches. This system regulates non-voluntary muscle actions in the body, such as in the heart and blood vessels.
Title: Re: Cause & Treatment, What I Learned
Post by IndianaJohn on Sep 10th, 2004, 1:18pm
OMG this was good!

A troll by any other name would still stink like shit [smiley=laugh.gif]
Title: Re: Cause & Treatment, What I Learned
Post by Jeepgun on Sep 10th, 2004, 1:22pm
*FWUMP!* Gotta go drop a troll....
Title: Re: Cause & Treatment, What I Learned
Post by Jonny on Sep 10th, 2004, 2:56pm
Having fun playing with the Troll, Folks?

Good....  8)

...........................jonny
Title: Re: Cause & Treatment, What I Learned
Post by Jeepgun on Sep 10th, 2004, 3:03pm
Jonny's all pissed and jealous 'cause he got to the party too late. LOL  ;;D S'okay, Jonny: You can have the next one. (There are always MORE)  >:(

-Tank
Title: Re: Cause & Treatment, What I Learned
Post by broomhilda on Sep 10th, 2004, 4:02pm

on 09/10/04 at 09:24:31, Jeepgun wrote:
*shooting a big white stream right in Susandy's eye.* "Oh, did that cause you to have a cluster headache? Oh sweetie... I'm so fucking sorry.... Let me go get you a towelette or something..."

Fawker....
>:( ;;D

Frank, you fucking kill me LMMFAO [smiley=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif]
Title: Re: Cause & Treatment, What I Learned
Post by Jeepgun on Sep 10th, 2004, 4:17pm
Muahahahahahaha... *dark, evil grin*  [smiley=laugh.gif]
Title: Re: Cause & Treatment, What I Learned
Post by Superpain on Sep 10th, 2004, 4:30pm
What causes people to seek attention in this manner? [smiley=huh.gif]
Title: Re: Cause & Treatment, What I Learned
Post by Gator on Sep 10th, 2004, 4:41pm

on 09/10/04 at 16:30:52, Superpain wrote:
What causes people to seek attention in this manner? [smiley=huh.gif]


Well, children who feel neglected sometimes think that negative attention is better then no attention.  Maybe trolls are actually abused children who didn't get enough attention.

Then again, they might just be a$sholes looking for a jolly.   ;;D

Gator
Title: Re: Cause & Treatment, What I Learned
Post by Jeepgun on Sep 10th, 2004, 4:43pm
Maybe they just really enjoy being squirted in the eye and told to STFU....  [smiley=laugh.gif]
Title: Re: Cause & Treatment, What I Learned
Post by Jonny on Sep 10th, 2004, 4:44pm

on 09/10/04 at 15:03:29, Jeepgun wrote:
Jonny's all pissed and jealous 'cause he got to the party too late. LOL  ;;D S'okay, Jonny: You can have the next one. (There are always MORE)  >:(

-Tank


Dude,

I just been sitting back laughing at how good of a job you all are doing  8)

Never think for a minute that I dont know what goes on here on this MB......LOL...got eyes and ears every where.

.................................jonny
Title: Re: Cause & Treatment, What I Learned
Post by Jeepgun on Sep 10th, 2004, 4:47pm
ROFLMAO!!
Title: Re: Cause & Treatment, What I Learned
Post by EvertBoer on Sep 10th, 2004, 5:22pm
Shouldn't this thread have been in the Jokes Topic? I know I have not laughed this hard in a long time. Both from the original, earnest, helpful post, and all the hilarious comments on it. Thank you all for making my day.
Title: Re: Cause & Treatment, What I Learned
Post by BlueMeanie on Sep 10th, 2004, 5:33pm
WOW !!!  Now that's a story.

Actually this person talks the CH lingo pretty well and may possibly actually get them. Holding your head in a certian position with mouth open for drooling makes a lot of since. And of course holding pressure points at temple and back of head make since.

I got lost on the part about the Easter egg basket full of M&M's.

I really wouldn't think of removing my saliva gland either.

I'm done with this thread. Have fun.


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