Again, My apologies to Potter. Got way ahead of myself.
Jeff

Jeff Savage wrote on May 22^nd, 2010 at 1:05am:



Just to clarify, 99% of the episodes that I've had were at night.
As I've stated before, I averaged 2-4 per night when they occurred.
Curiously the daytime episodes were completely random, more intense,  but were 99% singles.
The pattern for the night episodes: first round was 1hr after I went to sleep (almost to the minute). Subsequent rounds were close to one hour after I went back to sleep but not as consistant to the clock.

Since the ejection:
Since ejecting the plaque: 2 days off, 1 day on, (day x 2) (antibiotic) 5 days off (off antibiotic on day 3 or 4), 1 day on (night x 2) (back on antibiotic), 4 days off, 1 on (day x 1).
3 episodes totalling 5 headaches over 14 days.
The remainder of yesterday afternoon and last night were clear.

Today makes 2 weeks since the "chunk" was dislodged. I wasn't diagnosed with CH until after it was dislodged. Prior to that I wasn't logging the frequency of the episodes as there was no reason to do so. I have previously stated the frequency of my episodes based on my memory of the last 3 + years. The average number of episodes based on that memory would be 15 per week separated by a 1 or 2 day break. (2-4 per night / 4-6 days per 7).
Since these started I have had up to 2 weeks off but don't remember any longer breaks.

It is absolutely possible that what I've been dealing with may just mimic CH although the symptoms are absolutely identical. If the diagnosis is correct I would be a pup compared to some of the "terms" I've read about on this site. It does appear from the accounts I've read that it only gets worse from here.

All FWIW
Jeff

Bob, Thank your for the information / link.
After reading my previous posts you probably have affirmed that I am not a Dr.!

Probably not a surprise that I didn't even know what it was until Potter mentioned it.
I now don't doubt that the Hypothalamus is a part of this dilemma but is it the lightning or the thunder?

I find it curious that a part of the brain which, by the function definitions I've read is a reactive portion of the brain could be proactive in causing these.

The general functions of the hypothalamus are of extreme importance for the body, such as:      
pituitary gland regulation               blood pressure regulation                   hunger and salt cravings
feeding reflexes                            thirst                                                body temperature regulation
hydration                                     heart rate                                          bladder function
water preservation                        hormonal/neurotransmitter regulation   ovarian function
testicular function                        mood & behavioral functions                wakefulness
metabolism                                 sleep cycles                                      energy levels    

It doesn't make sense that it just decides that you're hungry and takes action .

It makes perfect sense that it receives a signal from the stomach that it is empty and then reacts by sending a signal to the brain and body to act.
If you feel hunger pangs you can drink water to temporarily satisfy them, Stomach sends the brain a msg saying I'm full, the hunger pangs stop although you still need food.

Pain would be another easy example. That portion of the body sends a signal to the  hypothalamus which in turn reacts by notifying the various functions of the body that handle pain.

In extremely simplistic terms it appears to be the "help desk?" but with executive decision capabilities.

I know this is very simplistic but, "IF" it's reactive rather than proactive wouldn't / couldn't  the abnormal activity at it's location be that it keeps trying to fix the problem (the pain) but the signals of pain keep coming? At the same time it begins getting bombarded with stress signals, then sinus issues, then a message from the optic nerve of the affected eye, then from the eyelid asking why am I not working correctly send help. Maybe it goes into DefCon 3?

The brain scan article is interesting in that it doesn't mention the length of time the scanned brains were subjected to these bombardments. What "IF" the scanned brains were of primarily those of you  who have had these 30 + years? I would hope that the study would have covered newbies and alumnists alike but it doesn't state that in the article.

For argument's sake, let's say that all or at least the bulk of the scans were from "alumnists" Without equal scans from both non affected individuals and newbies how do we or they know if the additional grey cells in the scans were causal or a byproduct of years and years of over stimulation of this part of the brain? Sort of like grey scar tissue?

I guess what I'm asking is which came first, the chicken or the egg?

Guess I'll try to research the specific demographis and findings on this study.

Lastly:
"Our results demonstrate for the first time the precise location in the brain involved in cluster headaches and help to explain why this condition shows such striking seasonal variation and clock-like regularity," said Professor Goadsby.

Doesn't say that the hypothalamus causes them, just says its involved.

regards,
Jeff

Hello Angela, Thanks for the comments. As a rule females aren't as inclined to spit as males so I'd be shocked if you ever noticed a piece of plaque as I did. If that is incorrect please advise.
Just curious, have you ever had:
1) nasal trauma,
2) adult acne,
3) more than minimal sinus infections per year,
4) high cholesterol
5) allergies manifesting in sinus issues

Don't be afraid to post, it's the internet. We are all anonomous unless we choose otherwise.

Based on the # of views it's apparent that there is some shade of interest in what's being said here. I haven't figured out why so many lurkers rather than participants though?!
I never tried 4Way. I was and still am very leary of Afrin but it does work for me. The bottle that I had was sitting on the shelf unused for almost a year. My sinus surgery did fix the problem that I'd had breathing through my nose. Prior to that I had about 25% ability to breath through it so when it closed up I had to do something.
How long have you been dealing with this?
Regards,
Jeff 

Thank you for a damned good post Redd.

       Potter

Potter wrote on May 22^nd, 2010 at 10:27pm:


I...am...in...awe...Pegg!

As usual, Potter says precisely in a few words what would take me paragraphs. I THINK I know stuff about this nightmare...I don't know nothin'.

Best I got dear...oh my...THANK YOU.

jon

Redd, 
After sleeping on what you said in your post I do have a couple of questions that you should be able to answer:

1) "IF" the Hypothalamus is the trigger point for these headaches:
      
Explain how a topical analgesic / anesthetic administered in a specific region within the sinus / nasal cavity could possibly abort a hit?

2) Since there is an association to the circadian rhythm “AND” the Hypothalamus is or has become permanently mutated:

Explain multi year hiatus.


FWIW, a better descriptor of what I have been trying to describe in my sinus rather than the technical terms "goobered up" or "boogered up" might be an abscess.
Similar to a dental abscess which not only causes a great deal of pain, flushing, sweating, increase in blood pressure, etc but infected viscous puss which is trapped within a cavity or void within the gums.
Your body's natural form of handling this material, once the infection is gone (antibiotics required) is to absorb it back into the blood stream to be filtered out via the kidney or liver. This process is accelerated but the tooth’s ability to flex or move within the gum allowing a percentage of the infected material to escape hydraulically between the tooth and gum into your mouth.
What "IF" due to its location within your nose, viscosity of the puss, and combined with a person's unique chemistry (statistically 0.1% affected) this re-absorption did not occur therefore leaving this pocket still filled with a toxic payload of much less than liquid possibly semi-solid material prone to re-infect, re-abscess, de-infect, re-infect, re-abscess, de-infect, re-infect, re-abscess, de-infect, re-infect, re-abscess, de-infect, . . .
Each time, due to the this particular body's rare inability to absorb most or all of the material the cavity grows, larger, inward, with each subsequent infection.
Due to repeat infections the tissue on the external side decays as do cells on the interior. This eventually exposes a portion of the mass to the nasal passage. This probably would harden the material even more rendering it even less likely to be absorbed. The cavity itself would probably have the same circular characteristics of the original pore where it was born. This in itself would keep the mass firmly in place either by vacuum or convergence. Over time this new exposed surface would likely erode due to both air movement and nasal discharge by blowing your nose. Continued growth not only eats deeper into the tissue but now allows the mass to push outward, bit by bit. But due to the circular void it occupies, incremental movement only distorts the pore opening. Over time this opening gets larger and larger. While the inner portion of the mass still has circular characteristics the exterior side now is elongated and flattened assuming the surface characteristics of the sinus wall due to erosion.
Up to this point the pain appears randomly, months, even years between episodes. Maybe just an unexplainable twinge in your nose that makes your eye water a bit. The larger pains are associated immediately as dental in origin a quick trip to the dentist or doctor results in a dose of antibiotics even though there is no outward sign of infection, either by x-ray or inspection. Antibiotics work, pain goes away because up until this point the pain has been a result of the infection. But at some point the mass within the pocket grows too close to the nerves. Aches return but this time antibiotics don't quell it because it is now pressure sensitive. Somewhat like a sty the tissue surrounding the tear duct only produces pain when touched. The pain and discomfort associated with a sty occurs when the infected pore increases in diameter either by inflammation or more fluid forced into the pore. This miniscule amount of growth is both intermittent and painful.
Back to business:
One night you go to sleep normally but this time your when facial muscles relax it allows the pocket opening to distort just enough to let just a bit of air inside the pocket or possibly a bit more material is forced into the cavity creating additional pressure.
Wham, instant headache.
You wake up, dance around in pain, scrunch up your facial muscles, sinus tissue swells and discharges fluid within the passage moistening the area and sealing it from air.
Then as suddenly as it began it starts to diminish even without pain killers since by now you’ve figured out that they don’t help at all. You finally head back to sleep. Maybe it flairs up again maybe not.

Don’t nerves die when they are exposed to air?

Then one day regardless of infection status the opening of the pore increases enough to allow the mass to be expelled for no reason other than dumb luck. The pain initially would be intense, probably more so than normal episodes. The body finally gets to heal and you go from +/- 33 night time “hits” in the previous 15 nights to 2 mild ones with a couple of daytimers thrown in just to keep you on your toes. 
Biggest concern you’ve got now is whether the crater will heal and close up or if it will just heal up but remain open with the possibility of starting this whole process over.

Sounds crazy doesn't it.

Regards,
Jeff

Jeff,
The headaches have been coming for 21 years now but I have very long remission periods. There was 7 years between the last 2 episodes.
My cholesterol is mildly elevated now but never was in the past. I had a lot of unexplained nosebleeds as a child. Numerous trips to ER to get them stopped. My sinuses are a mess. A MRI did show a cyst in my sinuses but my neurologist has assured me it is not contributing to my pain. Let's see... I had viral meningitis about 19 years ago and a bout with Bell's Palsy that was on the same side as my headaches. Other than that, I've been healthy. lol
I am not discounting the hypothalamus being involved. It could be.

The trouble with unidentified infections is that they CAN be identified.  A simple white blood cell count will identify it.

I'm not going to spend energy debating you on "what if's".  Not my thing.

Jeff, not one person here is discounting that you experienced something that could be confused with CH, and was obviously painful.  But I'll assure you, if antibiotics helped, if dislodging some body from your sinus helped...I can pretty well guarantee that you did not suffer from actual cluster headaches.

There are may conditions that can mimic CH, and I'm guessing that this is what you experienced. 

Edit to add:

Quote:


Well seeing as I prefer to continue breathing, for now, I can't tell you that I "for sure" have the wonky hypothalamus.  But research has shown that this IS the one and only known common factor among us Cluster heads.  That tells me it came first.  We were born this way.

George,

My standard answer to what does it feel like is it is akin to giving birth through my face. Even though I am a male and have never given birth I did watch my wife attempt to have my daughter without any drugs and she made the same sounds I make when I am at a 10. I don't know if I am being fair to the Mothers out there describing it that way, maybe somebody who has had both kinds of pain could set me straight.

Sincerely,

David

monty wrote on May 24^th, 2010 at 11:40am:

  Someone punch you in the nose?

         Potter

monty wrote on May 24^th, 2010 at 1:18pm:

Holy shit, Monty.

Slow down, man.

Brew wrote on May 24^th, 2010 at 1:20pm:

     Now that's eloquent without being flowery

        potter