Greetings. I'm new to the boards but unfortunately not new to the pain. If you'd like to read my justification for posting this I recently posted a lengthy diatribe on the guestbook portion of this site. I've read many synical posts regarding Afrin being touted as the remedy to these headaches. And I agree with them. However, a 2 to 1 mixture respectively of these two products knocked my last 2 episodes out in 15 seconds or less. The Afrin alone couldn't do anything to ease the pain. In fact, it alone might actually make it worse if my suspicions are correct. The addition of the benzocaine is what does it. Although the sinus shrinking capabilities of the Afrin is what enables the benzocaine to reach it's target, the nerve bundle. I firmly believe that, at least in my case it is a sinus / nasal corruption that instigates these episodes. Once again, the details of my reasoning and my history with these are on my guestbook rant. I know full well the level of pain and exhaustion you are dealing with. After reading so many posts I actually feel fortunate that I have only lived with them for 3-4 years now as crazy as that may sound. I feel as though I need to sell "you" on this but only because it worked so effectively for me. If you're skeptical, once again, please read my story on the guestbook.
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With any luck some of you may read something that sounds familiar in my story allowing you hope for the solution to this craziness.
Regards,
Jeff Savage Rockwall TX

Let me be the first to call bullshit.

         Potter

Potter wrote on May 18^th, 2010 at 12:51am:

Let me be the first to call bullshit.          Potter

I believe that some posters here have what I believe to be *minimum post syndrome* ( a condition that occurs when a poster comes on board touting a *cure* or *relief* from methods not formerly known to most custerheads who have tried everything in the book~and even wrote several chapters of said book).

Potter-heh! So well and eloquently said. I do have a serious question, here, though. I know I read somewhere about 4 Way Nasal spray being used (perhaps as one kind of abortive?) but I can't remember who or where. Sinus headaches can hurt, and there is a form of ocular migraine, both of which I believe can exacerbate a cluster.  Just wondering.

I was one of them Wimsey! Jackie suggested it to me at one of the get togethers. 4Way Nasal Decongestant Fast Acting    is the full name. Phenylephrine Hydrochloride 1% is its primary med. Used on the same side as the attack it'll knock shadows down. Obviously with 02, Red Bull and Imitrex....I haven't had to try it on a full blown attack.

So there MIGHT be something to this. The second part is his discussion on the benzocaine. In the 80's I used to drip a 3% solution of lidocaine down the affected side's nostril. Would ratchet the pain down 2 or so clicks.

I too am suspicious of new treatments but have already seen enough weird stuff.......oxygen, RC seeds, mushrooms, nasal sprays, I try to keep an open mind. As long as the poster isn't selling it...... ;)

Joe

Potter: That's a strange response from someone who knows what these feel like. I don't remember trying to profit from anything that I've said. What damage or harm could I possibly do by suggesting something that worked for me? Your stance is fairly arrogant and unfortunately the first reply to my post. Too bad a newbie to the site who just found out what he's been dealing with might not even give it a second thought due your comment. He'd be much better off trying Imitrex, O2, psychotics, MJ,  nerve blocks, or kill his liver by taking 20 advil a night before he figures out that aint working, etc! Better yet maybe he'll go through 20K of dental work thinking that it's bad teeth till he runs out of candidates but still has the headaches and then another few grand on sinus surgery just to have them return. Yeah, that's a much better plan.
Delta: I guess I do unashamedly fall into your category. That would be because I was just dagnosed a week or so ago since it took 3 years for any DR to diagnose it. Knew nothing about a cluster headache before then but a lot of what I've read since then I could've written first hand. Yes I felt as though I needed to tout something that I tried that worked for me. In the short period of time that I've been aware of these I wasn't quite able to read every post or possible remedy that's been made public on the subject. Just thought I'd post something that I found helpful since the alternate relief methods I listed above don't sound appealing to me. This combination may have been "touted" many times before for all I know. I wish I'd found out about it a couple of years ago! If one person tries it and gets any degree of relief, I've helped for about 10 bucks worth of OTC meds.
If you are content with your treatment, great! If you've tried this combination and it didn't work for you, you have my sympathy.

I must add however mine returned last night after a short week hiatus. I tried  my mix again but didn't get the same result as before. The first couple of sprays helped somewhat. I then blew my nose with success and a subsequent spray helped even more. I guess I needed to clense the pallet so to speak. That episode still took another 15 minutes more to subside enough to let me fall back to sleep. I guess it was too established by then. Woke up with another round about 2 hrs later, blew my nose first this time and shot the mist more vertically up the nose and got relief within about 5 minutes that time. It does burn a little bit at first but it's actually a distracton to the real pain.

Let my clarify my position: I'm not selling anything!!! If you don't like the sound of it or have tried it w/o success, sobeit! If you do try it and have success, fantastic, glad for that (Still not selling it though)
Jeff

Nasal corruption as you call it ain't what causes clusters.  It's the hypothalamus.

        Potter

Sorry dude, quick check on Google:
"The hypothalamus regulates the hormonal system and emotions. The “higher” brain has limited control over the hypothalamus. Because of the physical closeness of sexual and aggressive centers within the hypothalamus, sexual instinct and violence become connected for lust murderers. The hypothalamus may be damaged through malnutrition or injury."

Britanica:
Region of the brain containing a control centre for many autonomic-nervous-system functions. Its complex interaction with the pituitary gland makes it an important part of the endocrine system. As a critical link between the body's two control systems, the hypothalamus regulates homeostasis. Nervous and hormonal pathways connect it with the pituitary, which it stimulates to release various hormones. The hypothalamus influences food intake, weight regulation, fluid intake and balance, thirst, body heat, and the sleep cycle. Disorders can produce pituitary dysfunction, diabetes insipidus, insomnia, and temperature fluctuations.

Health Dictionary:
The part of the brain that controls hunger, thirst, and body temperature and regulates various activities in the body connected with metabolism, including the maintaining of water balance. The hypothalamus also controls the action of the pituitary gland.

Everything I've been able to read so far is saying "they" don't know what causes CH.

I'm no Dr. but I do know the difference between a raping murder spree and a headache episode.
And I don't have a sleep disorder, hot flashes, diabetes, weight or lactation issues either.

Don't know what I did to twist you off so bad but whatever it was I apologize. If you don't care for the direction of my postings please ignore me (really).

If you don't believe that an infected wound in your sinus / nasal passage that encroaches on the nerve bundle "could" cause these, fine.

FWIW the plaque I referred to in my guestbook would be invisible to an MRI or CT scan due to its density. If they could see it they could also detect a blockage in your arteries with the same scan, which can't be done!

I'm convinced that I'm onto something that may be innocuos enough to be overlooked in normal nasal exams. I'd had 2 MRI's and a CT scan along with surgery to repair a deviated suptum and remove a "significant" bone spur from the uppermost portion of my septum. All of this occurred within an inch or so of where I believe the plaque later dislodged from . It absolutely can be overlooked by the medical profession.
You do believe in toothaches don't you? Same nerve bundle, same type of pain, different INFECTION. Which, by the way can be temporarily calmed bycontact with benzocaine.
You're right, this is far fetched.
Probably even more crazy than a high school sophomore discovering a cure / treatment for a specific type of cancer this week.

Dang me for being a dreamer.

Like I said, please ignore me.
Jeff

Getting back to the intended subject:

I must add that my headaches returned the night before last after a short week hiatus. I tried  my mix again but didn't get the same result as before. The first couple of sprays helped somewhat. I then blew my nose with success and a subsequent spray helped even more. I guess I needed to clense the pallet so to speak. That episode still took another 15 minutes more to subside enough to let me fall back to sleep. I guess it was too established by then. Woke up with another round about 2 hrs later, blew my nose first this time and shot the mist more vertically up the nose and got relief within about 5 minutes that time. It does burn a little bit at first but it's actually a distraction to the real pain.

For what it's worth I had quit taking the antibiotic as I was feeling much better. My bad! Will absolutely finish the regimen this time.

Nothing last night, slept great.

Since ejecting the plaque: 2 days off, 1 day on,(anitbiotic) 5 days off (off antibiotic on day 3 or 4), 1 day on (back on antibiotic), today counts as day 2 of off.
Hopefully tonight will be peaceful.
Jeff

Since I believe the plaque had everything to do with this I wonder if the fact that I have high cholesterol may be a common denominator? Anyone?
Jeff

Jeff Savage wrote on May 19^th, 2010 at 9:42pm:

Sorry dude, quick check on Google: "The hypothalamus regulates the hormonal system and emotions. The “higher” brain has limited control over the hypothalamus. Because of the physical closeness of sexual and aggressive centers within the hypothalamus, sexual instinct and violence become connected for lust murderers. The hypothalamus may be damaged through malnutrition or injury." Britanica: Region of the brain containing a control centre for many autonomic-nervous-system functions. Its complex interaction with the pituitary gland makes it an important part of the endocrine system. As a critical link between the body's two control systems, the hypothalamus regulates homeostasis. Nervous and hormonal pathways connect it with the pituitary, which it stimulates to release various hormones. The hypothalamus influences food intake, weight regulation, fluid intake and balance, thirst, body heat, and the sleep cycle. Disorders can produce pituitary dysfunction, diabetes insipidus, insomnia, and temperature fluctuations. Health Dictionary: The part of the brain that controls hunger, thirst, and body temperature and regulates various activities in the body connected with metabolism, including the maintaining of water balance. The hypothalamus also controls the action of the pituitary gland. Everything I've been able to read so far is saying "they" don't know what causes CH. I'm no Dr. but I do know the difference between a raping murder spree and a headache episode. And I don't have a sleep disorder, hot flashes, diabetes, weight or lactation issues either. Don't know what I did to twist you off so bad but whatever it was I apologize. If you don't care for the direction of my postings please ignore me (really). If you don't believe that an infected wound in your sinus / nasal passage that encroaches on the nerve bundle "could" cause these, fine. FWIW the plaque I referred to in my guestbook would be invisible to an MRI or CT scan due to its density. If they could see it they could also detect a blockage in your arteries with the same scan, which can't be done! I'm convinced that I'm onto something that may be innocuos enough to be overlooked in normal nasal exams. I'd had 2 MRI's and a CT scan along with surgery to repair a deviated suptum and remove a "significant" bone spur from the uppermost portion of my septum. All of this occurred within an inch or so of where I believe the plaque later dislodged from . It absolutely can be overlooked by the medical profession. You do believe in toothaches don't you? Same nerve bundle, same type of pain, different INFECTION. Which, by the way can be temporarily calmed bycontact with benzocaine. You're right, this is far fetched. Probably even more crazy than a high school sophomore discovering a cure / treatment for a specific type of cancer this week. Dang me for being a dreamer. Like I said, please ignore me. Jeff

  So the Hypothalamus has nothing to do with clusters and clusters are caused by a boogered up nose. What a crock.

                  Potter
   

You are quite the breath of fresh air aren't you?
The plaque I referred to does not qualify as a booger.
I have no idea whether the hypothalamus could trigger a gland in a sinus to over secrete causing the mass I found. I guess it's remotely possible. I'm not a Dr. but I don't have any symptoms in any of the systems it regulates so I'd have to bet against it.

Since "they" don't "know" what causes these things, ya think "maybe" there could be more than one cause?


And, until "they"  "know" what causes these things all they can do is treat the symptoms. Agreed?


Dealing with this as long as you have (my sympathies BTW) you likely have been to more Dr's than I had in my graduating class. How many did you go through before one was able to name what you had? We're not dealing with a hot topic within the medical profession.

I went through 6 before my ENT made the diagnosis as his 3rd guess. He then sent me to a neurologist to get put on meds which to this point I still decline. He'd already lost interest even though I've offered a viable cause for mine. It was easier to send me to a specialist effectively passing the buck.

You think a neurologist is going to dig around in your sinus when an ENT referred you? He'd assume it had already been done I suspect. His job at that point would be to stop the pain or figure out where it originates from in your nervous system and or brain.

What if that's not where it originates and your ENT missed it?

Subject change:
How much flesh or muscle mass do you suppose encompasses the affected nerve bundle in your face?  It'd be the area parallel to the bridge of your nose and under the innermost tear duct.
What do you think doc?

Jeff Savage wrote on May 20^th, 2010 at 12:09am:

You are quite the breath of fresh air aren't you? The plaque I referred to does not qualify as a booger. I have no idea whether the hypothalamus could trigger a gland in a sinus to over secrete causing the mass I found. I guess it's remotely possible. I'm not a Dr. but I don't have any symptoms in any of the systems it regulates so I'd have to bet against it. Since "they" don't "know" what causes these things, ya think "maybe" there could be more than one cause? And, until "they"  "know" what causes these things all they can do is treat the symptoms. Agreed? Dealing with this as long as you have (my sympathies BTW) you likely have been to more Dr's than I had in my graduating class. How many did you go through before one was able to name what you had? We're not dealing with a hot topic within the medical profession. I went through 6 before my ENT made the diagnosis as his 3rd guess. He then sent me to a neurologist to get put on meds which to this point I still decline. He'd already lost interest even though I've offered a viable cause for mine. It was easier to send me to a specialist effectively passing the buck. You think a neurologist is going to dig around in your sinus when an ENT referred you? He'd assume it had already been done I suspect. His job at that point would be to stop the pain or figure out where it originates from in your nervous system and or brain. What if that's not where it originates and your ENT missed it? Subject change: How much flesh or muscle mass do you suppose encompasses the affected nerve bundle in your face?  It'd be the area parallel to the bridge of your nose and under the innermost tear duct. What do you think doc?

     One.

    Potter

         

Your first Dr. diagnosed you correctly?

How long ago was that?

When were you in Nam?

Subject change:
How much tissue or muscle mass do you suppose encompasses the affected nerve bundle in your face?  It'd be the area parallel to the bridge of your nose and under the innermost tear duct.
What do you think doc?



Jeff

There are 38 articles in PubMed that mention lidocaine and cluster headaches. There are a few others that mention related local anesthetics. It sometimes works. It is not as effective as many other treatments, but if it does work for anyone, great!

Lidocaine can directly block cluster pain when applied to the painful area around the trigeminal nerve, and it can block clusters indirectly when used as a nerve block in areas of the neck, face or sinuses. The hypothalamus is indeed a key player in this pain syndrome, but it is not the only one. Hypothalamus sends messages to activate the trigeminal nerve, and the pain occurs in the trigeminal nerve right behind one eye.

Potter - you are the bullshitter.

That I recall, I have never claimed to be a Dr. or in any medical field. I'm in law enforcment fwiw.

I do not claim to know much of anything about these other than what I've dealt with, read, or observed first hand.

Nothing that I've read, including your smarta$$ holier than thow bullshitt says anything other than treating them through meds.

Something causes them!

I've read nothing that indicates it's the same cause in all people, because "THEY" DON'T KNOW WHAT CAUSES THEM.

It's entirely possible that whatever causes my headaches, besides you, could be totally different that what causes yours.

Unlike you, I believe I have found the cause of mine and am merely attempting to determine if anyone else out there may have similar symptoms. If I am incorrect sobeit.

Why that got stuck in your gullet I have not a clue.

If you can't grasp the concept of a condition that may be similar to an active ulcer in the sinus cavity, tucked away somewhere just out of reach or sight, you have tunnel vision in addition with your other ailments.

You probably didn't even know that some stomach ulcers can now be eradicated with antibiotics because you've got your pompous head so far up your a$$.

Oh BTW, "THEY" just figured that out a few years ago after centuries of people suffering from them and Dr's just treating the symptoms.

SOUND FAMILIAR?

Seems like I remember hearing something recently about anitbiotics?! Oh yeah, it was me! Since I resumed taking mine I'm now have several full nights of sleep under my belt. A refreshing change from the bulk of the last three years.

I guess you'll now be the first to call bullshit on that as well?

Once you close your mind you have rendered yourself incapable of both learning and progress.

Since you apparently know it all please return to your life and leave this one alone.

There is absolutely no harm in anything that I've posted just a perspective. 

I'm asking nicely, please desist.
Jeff

Jeff - It's obvious you feel strongly (and, fwiw, you are wrong about the use of the word "cause" in this case - you've merely found a method of treatment that works for you), but you need to tone down the personal attacks or you'll be outta here so fast your head will spin.

Consider yourself warned by someone who has no power to do anything about it.

monty wrote on May 20^th, 2010 at 12:26pm:

There are 38 articles in PubMed that mention lidocaine and cluster headaches. There are a few others that mention related local anesthetics. It sometimes works. It is not as effective as many other treatments, but if it does work for anyone, great! Lidocaine can directly block cluster pain when applied to the painful area around the trigeminal nerve, and it can block clusters indirectly when used as a nerve block in areas of the neck, face or sinuses. The hypothalamus is indeed a key player in this pain syndrome, but it is not the only one. Hypothalamus sends messages to activate the trigeminal nerve, and the pain occurs in the trigeminal nerve right behind one eye. Potter - you are the bullshitter.

As my first post dealt with benzocaine relieving my pain when I applied it directly to my sinus I believe you now qualify to:
EAT CROW or DEFICATION!
Your choice!

Jeff Savage wrote on May 20^th, 2010 at 8:53pm:

monty wrote on May 20th, 2010 at 12:26pm: There are 38 articles in PubMed that mention lidocaine and cluster headaches. There are a few others that mention related local anesthetics. It sometimes works. It is not as effective as many other treatments, but if it does work for anyone, great! Lidocaine can directly block cluster pain when applied to the painful area around the trigeminal nerve, and it can block clusters indirectly when used as a nerve block in areas of the neck, face or sinuses. The hypothalamus is indeed a key player in this pain syndrome, but it is not the only one. Hypothalamus sends messages to activate the trigeminal nerve, and the pain occurs in the trigeminal nerve right behind one eye. Potter - you are the bullshitter. As my first post dealt with benzocaine relieving my pain when I applied it directly to my sinus I believe you now qualify to: EAT CROW or DEFICATION! Your choice!

       I guess my choice would be to promulgate proven methods for quick, cheap, safe methods to abort the cluster headaches. Oxygen is the method of choice and I'm sure that o2 administered correctly would dry up your stuffy nose and clear your brain.
        You spelled defecate wrong.

          Potter
       

My apologies Monty. Potter was the only voice I'd been hearing and I didn't even notice that you were a different poster.


While the benzocaine relieved my pain it, just as all of the other meds I keep reading about, only treats the symptom. the bigger question here is whether or not that chunk of plaque is what caused the pain. I do know that since it was expelled I have realized a significant reduction in both quantity and severity of the episodes. I have only had one back to back episode. the rest have been singles and far less potent than I'd been dealing with. Probably not a coincidence.
I tried to get Potter's opinion as to the size of the mass of tissue that surrounds the nerve bundle where I believe mine initiate. Since the cat's finally got his tongue I guess I'll have to research it myself. I suspect that  it's minimal due to proximity to bone mass of your skull. A 1/4 inch deep hole in that area absolutely COULD encroach on it's path. Being a bundle of nerves rather than random the pain COULD be both intense and immense. Kindof a combination of getting all of your teeth pulled, getting punched in the nose and also kicked in the temple. All in unison and without the body producing adrenaline to help quell it by sending you into shock.
Pretty farfetched I guess?
Thanks again Monty.
Jeff

Jeff Savage wrote on May 20^th, 2010 at 9:07pm:

I suspect that  it's minimal due to proximity to bone mass of your skull. A 1/4 inch deep hole in that area absolutely COULD encroach on it's path. Being a bundle of nerves rather than random the pain COULD be both intense and immense. Kindof a combination of getting all of your teeth pulled, getting punched in the nose and also kicked in the temple. All in unison and without the body producing adrenaline to help quell it by sending you into shock. Pretty farfetched I guess? Jeff

S -I -G -H -H -H -H -H...WTF?...this grows tiresome. 28 yr dancer myself...if I could generate the amount of anger, animosity, and stubborness displayed so far...I could expect not to see 29...

WHATEVER works for you brother is fine with me...if you never had another ch I would rejoice...as would we all.....

Best,

Jon

Brew wrote on May 20^th, 2010 at 8:48pm:

Jeff - It's obvious you feel strongly (and, fwiw, you are wrong about the use of the word "cause" in this case - you've merely found a method of treatment that works for you), but you need to tone down the personal attacks or you'll be outta here so fast your head will spin. Consider yourself warned by someone who has no power to do anything about it.

Point taken. Thought that I'd showed considerable restraint until that point.
As far as my use of the word "cause" I believe I have said numerous times that what I used relieved the pain but the plaque "might" be the cause.
Whatever,
thanks for the advice,
Jeff

Potter wrote on May 20^th, 2010 at 9:04pm:

Jeff Savage wrote on May 20th, 2010 at 8:53pm: monty wrote on May 20th, 2010 at 12:26pm: There are 38 articles in PubMed that mention lidocaine and cluster headaches. There are a few others that mention related local anesthetics. It sometimes works. It is not as effective as many other treatments, but if it does work for anyone, great! Lidocaine can directly block cluster pain when applied to the painful area around the trigeminal nerve, and it can block clusters indirectly when used as a nerve block in areas of the neck, face or sinuses. The hypothalamus is indeed a key player in this pain syndrome, but it is not the only one. Hypothalamus sends messages to activate the trigeminal nerve, and the pain occurs in the trigeminal nerve right behind one eye. Potter - you are the bullshitter. As my first post dealt with benzocaine relieving my pain when I applied it directly to my sinus I believe you now qualify to: EAT CROW or DEFICATION! Your choice!        I guess my choice would be to promulgate proven methods for quick, cheap, safe methods to abort the cluster headaches. Oxygen is the method of choice and I'm sure that o2 administered correctly would dry up your stuffy nose and clear your brain.         You spelled defecate wrong.           Potter

Sorry 'bout that.
Jeff

Jeff Savage wrote on May 20^th, 2010 at 10:49pm:

Brew wrote on May 20th, 2010 at 8:48pm: Jeff - It's obvious you feel strongly (and, fwiw, you are wrong about the use of the word "cause" in this case - you've merely found a method of treatment that works for you), but you need to tone down the personal attacks or you'll be outta here so fast your head will spin. Consider yourself warned by someone who has no power to do anything about it. Point taken. Thought that I'd showed considerable restraint until that point. As far as my use of the word "cause" I believe I have said numerous times that what I used relieved the pain but the plaque "might" be the cause. Whatever, thanks for the advice, Jeff

1,  You thought incorrectly.
2.  Are you suggesting a mass witch is no longer there is still the cause of your CH?

Have a wonderful day.

FramCire wrote on May 20^th, 2010 at 11:00pm:

Jeff Savage wrote on May 20th, 2010 at 10:49pm: Brew wrote on May 20th, 2010 at 8:48pm: Jeff - It's obvious you feel strongly (and, fwiw, you are wrong about the use of the word "cause" in this case - you've merely found a method of treatment that works for you), but you need to tone down the personal attacks or you'll be outta here so fast your head will spin. Consider yourself warned by someone who has no power to do anything about it. Point taken. Thought that I'd showed considerable restraint until that point. As far as my use of the word "cause" I believe I have said numerous times that what I used relieved the pain but the plaque "might" be the cause. Whatever, thanks for the advice, Jeff 1,  You thought incorrectly. 2.  Are you suggesting a mass witch is no longer there is still the cause of your CH? Have a wonderful day.

1. Absolute apologies to Potter and all. Truly not here to argue.
2. No. I'm suggesting that the mass compounded the aggravation of the nerves in that area due to it's size. An infection in the pocket it came from may have been responsible for the headaches by allowing either air or infection to contact the nerves. Similar to a toothache I guess? Some pore or gland at that area had to have secreted the material which formed the mass that I have labeled plaque.  My guess, (that's all it is) is that over time the mass went from small and insignificant to the size it was when it was displaced / ejected/ whatever. It's visible characteristics indicated that it was infected. I think the infections over time ate into the tissue enlarging the cavity / crater. The shape of the mass was not conical so the tissue actually held it in place until whatever happened that day allowed it to "pop out" Can't think of a better description sorry. The subsequent headaches after the ejection likely were the result of infection. I have previously said that they changed after the ejection in that the pain was no longer intense at my teeth.
Look, I'm not trying to start anything other than possibility. I am not trying to outfox you or malign you and your collective efforts to control this thing. It's just damn scary that in spite of the efforts of the Dr's that I've seen up to this point this was missed. I'm not saying this is what's causing everyone's either, that'd be crazy. But what if it did cause a percentage of them? Maybe someone who read my post might ask a different question next time they go to the Dr. For all I know I've been misdiagnosed yet again and my symptoms only mimic CH? I just don't know. I think, obviously, that it would be wrong not to throw it out for discussion though.
Nite,
Jeff

Quote:

but you need to tone down the personal attacks or you'll be outta here so fast your head will spin. Consider yourself warned by someone who has no power to do anything about it.

Jeff, Consider yourself warned by those of us that DO.  Personal attacks are NOT tolerated around here by our webmaster and owner of the site.  In case you did not see DJs standard of conduct when you came in here, here it is:


Quote:

CH.com Standard of Conduct Feb 2nd, 2009 at 10:09pm     ClusterHeadaches.com is going to live by a new set of "standards" that involve integrity and respect.  These standards have been added to the registration agreement so every new member who joins from now on will know what the expectations are when they create their profile. This message board is not a democracy, at best it is a benevolent dictatorship.  As such, users of this site will be held to a prominent standard of integrity and respect. Debate is welcome (and encouraged), but attack ideas and opinions; not personalities.  Note that putting an "in my opinion" type of qualifier on a violating statement does not change the fact that the statement violates these standards. Personal attacks or threats against other board members will NOT be tolerated. Racist, sexist, Anti-Semitic remarks, or hate speech will not be allowed. Calling a member 'troll' or using 'troll' or similar emoticons is considered a personal attack.  Abuse of the Private Message (PM) privileges, harassment, stalking, etc... will not be tolerated. As a general guideline, the first instance of a member violating these standards will result in a “lock down” of one week during which the member will not be allowed to post on the message board or send/receive PM’s.  A second instance will result in a “lock down” of one month.  A third instance will result in immediate and permanent banning. In order to protect and preserve the overall health and well-being of the site, the owners/administrators reserve the right to remove any post or user from our community at our sole discretion and without explanation. YOUR FREEDOM TO LEAVE – All visitors to the ClusterHeadaches.com Message Board are here voluntarily.  Nobody is forcing you to post here.  The Administrators and Moderators try their best to be fair, and to make the ClusterHeadaches.com Message Board a welcoming place to participate in a lively exchange of ideas about living life with cluster headaches.  If you don't like the Members/Moderators/Administrators of the ClusterHeadaches.com Message Board, or the way the ClusterHeadaches.com Message Board is run, then we strongly suggest that you exercise your freedom to leave. Back to top     --------------------------------------------------------------------------------

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

Jeff Savage wrote on May 19^th, 2010 at 10:17pm:

Getting back to the intended subject: I must add that my headaches returned the night before last after a short week hiatus. I tried  my mix again but didn't get the same result as before. The first couple of sprays helped somewhat. I then blew my nose with success and a subsequent spray helped even more. I guess I needed to clense the pallet so to speak. That episode still took another 15 minutes more to subside enough to let me fall back to sleep. I guess it was too established by then. Woke up with another round about 2 hrs later, blew my nose first this time and shot the mist more vertically up the nose and got relief within about 5 minutes that time. It does burn a little bit at first but it's actually a distraction to the real pain. For what it's worth I had quit taking the antibiotic as I was feeling much better. My bad! Will absolutely finish the regimen this time. Nothing last night, slept great. Since ejecting the plaque: 2 days off, 1 day on,(antibiotic) 5 days off (off antibiotic on day 3 or 4), 1 day on (back on antibiotic), today counts as day 2 of off. Hopefully tonight will be peaceful. Jeff Since I believe the plaque had everything to do with this I wonder if the fact that I have high cholesterol may be a common denominator? Anyone? Jeff

Update  for 05-21-10;
I made it 3 nights and almost a full day but had another headache this afternoon. While still painful it seemed to "come on" slower. Just a gradual crescendo. Unluckily for me it started while I was on my way home from work so it was almost a half hour in before I was able to spray my sinus. I had some immediate relief but it took 5-10 more minutes before it was gone.
I still have only had one multiple episode since the eviction of the "chunk". Today's was just a single. For right now I apparently am just having headaches rather than a cluster although the location is identical.
I plan to visit my PCP next week to make sure that the particular dosage and type of antibiotic is correct for this type of infection since I asked him for Amoxiclav/ Augmentin.

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

Jeff Savage wrote on May 19th, 2010 at 10:17pm: Getting back to the intended subject: I must add that my headaches returned the night before last after a short week hiatus. I tried  my mix again but didn't get the same result as before. The first couple of sprays helped somewhat. I then blew my nose with success and a subsequent spray helped even more. I guess I needed to clense the pallet so to speak. That episode still took another 15 minutes more to subside enough to let me fall back to sleep. I guess it was too established by then. Woke up with another round about 2 hrs later, blew my nose first this time and shot the mist more vertically up the nose and got relief within about 5 minutes that time. It does burn a little bit at first but it's actually a distraction to the real pain. For what it's worth I had quit taking the antibiotic as I was feeling much better. My bad! Will absolutely finish the regimen this time. Nothing last night, slept great. Since ejecting the plaque: 2 days off, 1 day on,(antibiotic) 5 days off (off antibiotic on day 3 or 4), 1 day on (back on antibiotic), today counts as day 2 of off.Hopefully tonight will be peaceful. Jeff Since I believe the plaque had everything to do with this I wonder if the fact that I have high cholesterol may be a common denominator? Anyone? Jeff Update  for 05-21-10; I made it 3 nights and almost a full day but had another headache this afternoon. While still painful it seemed to "come on" slower. Just a gradual crescendo. Unluckily for me it started while I was on my way home from work so it was almost a half hour in before I was able to spray my sinus. I had some immediate relief but it took 5-10 more minutes before it was gone. I still have only had one multiple episode since the eviction of the "chunk". Today's was just a single. For right now I apparently am just having headaches rather than a cluster although the location is identical. I plan to visit my PCP next week to make sure that the particular dosage and type of antibiotic is correct for this type of infection since I asked him for Amoxiclav/ Augmentin.

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

CH and the hypothalamus
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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

Jeff,
I am new to this board and avoid posting much (I'm sure you can figure out why). I appreciate your posts about the nasal spray. We could debate forever what causes CH but I have said before that I believe mine are triggered by something with my sinuses. I found the 4 Way Nasal Spray very helpful for me. Best of luck to you and I hope you find complete relief soon.

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 

Jeff,

First, some facts to help you understand me and the beast.

1) I have a deviated septum on my cluster side.  That was caused by an assault in 1996. 

2) 3 or 4 times a year since then I will blow a huge hard honker out of the left nasal cavity.

3) I have had numerous head traumas the last of which was also in 1996.

4) I've had allergy issues since very young.  First starting with medication allergies beginning age 6, and then added food allergies in 1985, and again in 1989. Added pollens and other airborne pollutants in 1984, and new medication allergies in 1991.  The airborne effect both my sinuses and my eyes.

But here is the kicker...well before I was officially DX with Clusters in 2004 or 2005, I can trace back in my medical records my first full on cycle to the spring of 1983. 

Part of the roll the hypothalamus plays is in the fact that in Sufferers, the inferior posterior hypothalamus is malformed.  Minimally, but the cells in this region are slightly larger and more dense than in a normal hypothalamus. 

Science is not perfect, but knowing that this anomaly in the hypothalamus of cluster sufferers exists, is in itself a logical basis to show that the root of the condition lies there.

Now that being said,  As you mentioned and can be found most anywhere the hypothalamus is the part of the brain that regulates many bodily functions.  Those directly influenced in the Cluster pathogenesis are,

circadian rhythms,
body temperatures,
blood pressures,
and neurotransmitter production and action

If you read up more on this condition you will learn that there is a connection in this condition that is obviously and glaringly seasonal and clockwork.

Also, due to the fact that certain medications are effective we can know that there are certain neurotransmitters, (serotonin the main one) in the mix. 

Most of us heat up and sweat like pigs during a hit.   Some of us have natural high blood pressure to start with, and some, like myself, have naturally below normal blood pressures. 

We know that during a hit, the blood vessels in our brains will swell to 10 or 20 times their normal size.  This aggravates the trigeminal nerve, and is why the pain location can be traced along the branches of this nerve. 

One of the three branches of this nerve directly effects the sinus cavity, and why many of us feel as if a large knitting needle heated to red hot is being jammed up our nostril, and why the nose runs or gets blocked.  The nerves also branch to the upper and lower jaws, causing sever tooth and jaw pain.  Do you know the numbers of people who have had their perfectly healthy teeth pulled needlessly because for them,  their beast lived in those nerves?


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How, exactly, this process happens is yet to be discovered.  But please, understand that there is more at work here than just a gooped up nose.

Thank you for a damned good post Redd.

       Potter

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

Thank you for a damned good post Redd.        Potter

Anytime my friend.

Sometimes, for a new comer, it's advantageous to give a comprehensive explanation in layman's terms.

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

Thank you for a damned good post Redd.        Potter

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

Thank you Redd. Nice to see some folks coming out to play with information. I agree with potter, that was a damned good post.

"Do you know the numbers of people who have had their perfectly healthy teeth pulled needlessly because for them,  their beast lived in those nerves?

It was an assumption that I had made as I am part of that statistic.

How many headaches do you suppose you endured in the 21 years from onset to DX?
That is the scariest commentary within your post.

With utmost respect to what you must've endured it still doesn't answer which came first though.

It's not a "gooped" or "boogered" up nose. Don't know why that keeps popping up. Does anything that I've described sound like a sinus infection?

What I've described is an infection within the sinus in absolute proximity to the area triangulated  by 23, 25, and 41. 

Do you possibly have a frontal view version of this illustration?

I was, am, and until proven otherwise will stay convinced that is where mine initiates from.
Hope like hell I'm right after listening to what others have lived with!
 


Still a very informative post BTW.

Regards,
Jeff

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

  Why can't you accept the fact that a misfiring hypothalamus is the cause of clusters?

             Potter

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.

Jeff Savage wrote on May 23^rd, 2010 at 10:03pm:

Sounds crazy doesn't it.

Yup...exactly...seems to be the point ...repeated over and over and over and over and over and over..a real life GHD...

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:

it still doesn't answer which came first though.

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.

Jeff, I have no wish to dispute your conviction that a sinus issue is at the root of your particular experience with CH.  This is a complex syndrome.  Like you, I am not a doctor, and I certainly don't claim to be anything like a neurologist.       

In my own experience, however, I can only say that I have never had any sinus issues, nor have I ever been diagnosed with a sinus infection of any kind.  I've had episodic CH for 43 years, and it has always had a strong cyclic and seasonal component.

I was thoroughly convinced for many years that my cluster headaches were precipitated by some sort of malformation in my cervical vertebrae.  Turns out, however, (and I realized it after listening to some of the others here) that the "neck thing" that's invariably associated with my cycles is a relatively common side-effect of the headaches--not a cause.  Swollen nerve ganglia along the upper spinal column. 

It's the secondary effects of CH--the autonomic nervous symptoms--that make me wonder how one can ascribe CH to a sinus infection.  Watering eye.  Sweating.  Swollen nerve ganglia.  Etc.

As you know, a CH attack isn't like anything else a person can name.  It's a neuropathic event affecting the autonomic nervous system, and it feels different than anything else that might involve the nerve endings themselves, no matter how painful. 

I was recently interviewed by a newspaper reporter about CH whose primary interest was in asking me what it felt like.  As always, I had a tough time answering.  Not because other folks don't have experience with pain, but because it doesn't feel like anything else a person can point to.  There's no analogy for it. 

Bottom line, after much rambling, I suppose, is that I don't see how any conceivable sinus infection could be the root cause of the neuropathic pain associated with CH.

Best wishes,

George       

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

Potter wrote on May 23^rd, 2010 at 10:22pm:

Why can't you accept the fact that a misfiring hypothalamus is the cause of clusters?              Potter

It is a cause, not the cause.  Necessary, but not sufficient. I have experienced years of phantom clusters and years of remission, and I don't think my hypothalamus has changed as much as other parts of my body. Injury to my sinuses ended my remission.

And some top cluster researchers are talking about non-hypothalamic cluster headaches.


Quote:

J Headache Pain. 2005 Jun;6(3):149-51. Epub 2005 May 13. Non-hypothalamic cluster headache: the role of the greater occipital nerve in cluster headache pathogenesis. Rozen TD. Michigan Head-Pain and Neurological Institute, 3120 Professional Drive, Ann Arbor, MI 48104, USA. trozen@mhni.com Abstract Cluster headache is marked by its circadian rhythmicity and the hypothalamus appears to have a significant influence over cluster pathogenesis. However, as not all cluster patients present in the same manner and not all respond to the same combination of medications, there is likely a nonhypothalamic form of cluster headache. A patient is presented who began to develop cluster headaches after receiving bilateral greater occipital nerve (GON) blockade. His headaches fit the IHS criteria for cluster headache but had some irregularities including frequent side shifting of pain, irregular duration and time of onset and the ability of the patient to sit completely still during a headache without any sense of agitation. This article will suggest that some forms of cluster headache are not primarily hypothalamic influenced and that the GON may play a significant role in cluster pathogenesis in some individuals.

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

Potter wrote on May 23rd, 2010 at 10:22pm:   Why can't you accept the fact that a misfiring hypothalamus is the cause of clusters?              Potter It is a cause, not the cause.  Necessary, but not sufficient. I have experienced years of phantom clusters and years of remission, and I don't think my hypothalamus has changed as much as other parts of my body. Injury to my sinuses ended my remission. And some top cluster researchers are talking about non-hypothalamic cluster headaches. Quote: J Headache Pain. 2005 Jun;6(3):149-51. Epub 2005 May 13. Non-hypothalamic cluster headache: the role of the greater occipital nerve in cluster headache pathogenesis. Rozen TD. Michigan Head-Pain and Neurological Institute, 3120 Professional Drive, Ann Arbor, MI 48104, USA. trozen@mhni.com Abstract Cluster headache is marked by its circadian rhythmicity and the hypothalamus appears to have a significant influence over cluster pathogenesis. However, as not all cluster patients present in the same manner and not all respond to the same combination of medications, there is likely a nonhypothalamic form of cluster headache. A patient is presented who began to develop cluster headaches after receiving bilateral greater occipital nerve (GON) blockade. His headaches fit the IHS criteria for cluster headache but had some irregularities including frequent side shifting of pain, irregular duration and time of onset and the ability of the patient to sit completely still during a headache without any sense of agitation. This article will suggest that some forms of cluster headache are not primarily hypothalamic influenced and that the GON may play a significant role in cluster pathogenesis in some individuals.

  Someone punch you in the nose?

         Potter

LOL - no, they couldn't catch me. Different incident - I choked on a vitamin, vomited, and the stomach acid got pushed up through the sinuses.

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

LOL - no, they couldn't catch me. Different incident - I choked on a vitamin, vomited, and the stomach acid got pushed up through the sinuses.

Holy shit, Monty. :o

Slow down, man.

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

LOL - no, they couldn't catch me. Different incident - I choked on a vitamin, vomited, and the stomach acid got pushed up through the sinuses.

Megg has this issue due to GERD from birth to 6 months of age.  She'd projectile vomit out her mouth and nose multiple times a day.

Her sinuses healed, and there has been no signs of any lasting damage. 

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

monty wrote on May 24th, 2010 at 1:18pm: LOL - no, they couldn't catch me. Different incident - I choked on a vitamin, vomited, and the stomach acid got pushed up through the sinuses. Holy shit, Monty. :o Slow down, man.

     Now that's eloquent without being flowery

        potter

Hopefully humorous:


     "We know that during a hit, the blood vessels in our brains will swell to 10 or 20 times their normal size."

Really? 10 to 20 times? News to me, but then, so are a BIG % of things.


     "She'd projectile vomit out her mouth and nose multiple times a day."

Can't get. . .  image. . .  out of. . .  head.


      "Most of us heat up and sweat like pigs during a hit.

Hmm. . .  maybe not:

  "Pig - Wikipedia, the free encyclopedia
     Pigs do not have functional sweat glands, so pigs cool themselves using water or mud during hot weather. They also use mud as a
     form of sunscreen to protect ..."


Ron

Yes, 10-20 times their normal size. When you're talking about circumference, it's not that tough to visualize.

Brew wrote on May 24^th, 2010 at 5:15pm:

Yes, 10-20 times their normal size. When you're talking about circumference, it's not that tough to visualize.

If you are talking 10 times in volume, it isnt that much .... but 10 times circumference is extreme.

FramCire wrote on May 24^th, 2010 at 5:29pm:

If you are talking 10 times in volume, it isnt that much .... but 10 times circumference is extreme.

Yeah, that's what I mean. In order to achieve 10-20 times the volume, the circumference doesn't have to increase all that much. Sure is enough to put some serious pressure on the surrounding nerves, though.

Redd - excellent, excellent post previously. I'm not a doctor, but am a 25 year registered nurse, and that was the best explanation I've read. Big kudos!

Potter wrote on May 23^rd, 2010 at 10:22pm:

Why can't you accept the fact that a misfiring hypothalamus is the cause of clusters?              Potter

Because it is a reactive center not proactive.

Why do you care what I think?
Jeff

jon019 wrote on May 23^rd, 2010 at 10:54pm:

Jeff Savage wrote on May 23rd, 2010 at 10:03pm: Sounds crazy doesn't it. Yup...exactly...seems to be the point ...repeated over and over and over and over and over and over..a real life GHD...

Yet again, a surprising answer from someone who who has likely had thousands of "hits" with not one answer as to why.

Seems like that would tick you off at the medical professin not me?

Unlike you I firmly believe that medicine is a "practice".

Redd wrote on May 23^rd, 2010 at 11:33pm:

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: it still doesn't answer which came first though. 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.

Where do I start?
Let's see, All infections do NOT result in an elevated white count, at least to the point that it would be considered out of parameters.

When you quit asking "what if" you've resigned yourself to a lot of pain and abortives for absolutely nothing but entertainment.

Since the cause of CH is not known that would be a generous assumption on your part.

Re: "Wonky Hypothalamus" Do you have a scan of yours prior to your first episode. have you seen "ANY" tests with scans of pre-onset patients that later developed CH? The odds of this actually occurring would be astronomical because of how often it is under diagnosed and misdiagnosed.
HAVE YOU HAD YOUR CHILDRENS BRAINS SCANNED TO SEE IF IT CAN BE HANDED DOWN GENETICALLY?

I haven't read all of the post from the apparent hornets nest I've stirred up but as of now:

You still have not answered my questions.

   You have a sinus headache.

          Potter

George wrote on May 24^th, 2010 at 2:01am:

Jeff, I have no wish to dispute your conviction that a sinus issue is at the root of your particular experience with CH.  This is a complex syndrome.  Like you, I am not a doctor, and I certainly don't claim to be anything like a neurologist.        In my own experience, however, I can only say that I have never had any sinus issues, nor have I ever been diagnosed with a sinus infection of any kind.  I've had episodic CH for 43 years, and it has always had a strong cyclic and seasonal component. I was thoroughly convinced for many years that my cluster headaches were precipitated by some sort of malformation in my cervical vertebrae.  Turns out, however, (and I realized it after listening to some of the others here) that the "neck thing" that's invariably associated with my cycles is a relatively common side-effect of the headaches--not a cause.  Swollen nerve ganglia along the upper spinal column.  It's the secondary effects of CH--the autonomic nervous symptoms--that make me wonder how one can ascribe CH to a sinus infection.  Watering eye.  Sweating.  Swollen nerve ganglia.  Etc. As you know, a CH attack isn't like anything else a person can name.  It's a neuropathic event affecting the autonomic nervous system, and it feels different than anything else that might involve the nerve endings themselves, no matter how painful.  I was recently interviewed by a newspaper reporter about CH whose primary interest was in asking me what it felt like.  As always, I had a tough time answering.  Not because other folks don't have experience with pain, but because it doesn't feel like anything else a person can point to.  There's no analogy for it.  Bottom line, after much rambling, I suppose, is that I don't see how any conceivable sinus infection could be the root cause of the neuropathic pain associated with CH. Best wishes, George

Thank you!
You have a different opinion, which is fine by the way, and managed to post a polite counter.
I am perfectly fine with skepticism. Actually it irks me but I do get over it.

1000% in agreement on the pain levels which is further compounded sensory overload due to their nocturnal manifestations compounded further still by exhaustion. Saying it is one thing, describing it . . . ?????
Thank you again,
Jeff

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

Potter wrote on May 23rd, 2010 at 10:22pm:   Why can't you accept the fact that a misfiring hypothalamus is the cause of clusters?              Potter It is a cause, not the cause.  Necessary, but not sufficient. I have experienced years of phantom clusters and years of remission, and I don't think my hypothalamus has changed as much as other parts of my body. Injury to my sinuses ended my remission. And some top cluster researchers are talking about non-hypothalamic cluster headaches. Quote: J Headache Pain. 2005 Jun;6(3):149-51. Epub 2005 May 13. Non-hypothalamic cluster headache: the role of the greater occipital nerve in cluster headache pathogenesis. Rozen TD. Michigan Head-Pain and Neurological Institute, 3120 Professional Drive, Ann Arbor, MI 48104, USA. trozen@mhni.com Abstract Cluster headache is marked by its circadian rhythmicity and the hypothalamus appears to have a significant influence over cluster pathogenesis. However, as not all cluster patients present in the same manner and not all respond to the same combination of medications, there is likely a nonhypothalamic form of cluster headache. A patient is presented who began to develop cluster headaches after receiving bilateral greater occipital nerve (GON) blockade. His headaches fit the IHS criteria for cluster headache but had some irregularities including frequent side shifting of pain, irregular duration and time of onset and the ability of the patient to sit completely still during a headache without any sense of agitation. This article will suggest that some forms of cluster headache are not primarily hypothalamic influenced and that the GON may play a significant role in cluster pathogenesis in some individuals.

The reports I've read state that the cause is still unknown. The Hypothalamus seems to play a part in it but may just be the body's surrender flag.

AdoreInVegas wrote on May 24^th, 2010 at 6:28pm:

Redd - excellent, excellent post previously. I'm not a doctor, but am a 25 year registered nurse, and that was the best explanation I've read. Big kudos!

Agreed, best one so far.

Jeff Savage wrote on May 24^th, 2010 at 7:54pm:

jon019 wrote on May 23rd, 2010 at 10:54pm: Jeff Savage wrote on May 23rd, 2010 at 10:03pm: Sounds crazy doesn't it. Yup...exactly...seems to be the point ...repeated over and over and over and over and over and over..a real life GHD... Yet again, a surprising answer from someone who who has likely had thousands of "hits" with not one answer as to why. Seems like that would tick you off at the medical professin not me? Unlike you I firmly believe that medicine is a "practice".

For Potter's sake it is profession not professin.
My bad Potter, dang spell check . . . .  ;O)

Potter wrote on May 24^th, 2010 at 8:14pm:

You have a sinus headache.           Potter

Thanks Doc, wish I'd come to you first. ;O)

Boy, I'm glad you haven't asked me to answer any questions. Nothing pi$$es me off more than answering questions for which the one asking already has the answers. I get that awful feeling like I'm being played.

Jeff Savage wrote on May 23^rd, 2010 at 1:06am:

Thank  some folks coming out to play

I'm done "playing".  Obviously Jeff has all the answers and the hundreds of years of collective professional sufferers accounts will not dissuade his know it all additude.

Plain and simple, if there is an infection at the root of the headaches, it's not "Cluster Headaches".  It's a condition that mimics clusters.

I'm outta this debate.

Edit to add:

Jeff one last thing.  You're sugar coated belligerence is not lost on us. 

Here is my assessment.

You had a sinus infection.  You don't suffer CH.   

Feel blessed, and have a great pain free life.

Brew wrote on May 24^th, 2010 at 8:29pm:

Boy, I'm glad you haven't asked me to answer any questions. Nothing pi$$es me off more than answering questions for which the one asking already has the answers. I get that awful feeling like I'm being played.

Yet again, a surprising answer from someone who who has likely had thousands of "hits" with not one answer as to why.

Seems like that would tick you off at the medical profession not me?


Unlike you I firmly believe that medicine is a "practice".

Jeff Savage wrote on May 24^th, 2010 at 7:54pm:

jon019 wrote on May 23rd, 2010 at 10:54pm: Jeff Savage wrote on May 23rd, 2010 at 10:03pm: Sounds crazy doesn't it. Yup...exactly...seems to be the point ...repeated over and over and over and over and over and over..a real life GHD... Yet again, a surprising answer from someone who who has likely had thousands of "hits" with not one answer as to why. Yup...thousands...and it's a wonky hypothalamus... Seems like that would tick you off at the medical professin not me? I'm not ticked at you brother...I'm bored..something this site is decidedly NOT. The same thing over and over...with the tag that "sounds crazy, doesn't it?" Yup...again... Unlike you I firmly believe that medicine is a "practice". Hmmmm....where did you get that? What "medicine" doesn't know about ch is mind boggling....endlessly repeating a personal theory about ch doesn't make it compelling... At least we can agree on one thing....George is, among many others, a CLASS act that I aspire to... Best, Jon

jon019 wrote on May 24^th, 2010 at 9:02pm:

Jeff Savage wrote on May 24th, 2010 at 7:54pm: jon019 wrote on May 23rd, 2010 at 10:54pm: Jeff Savage wrote on May 23rd, 2010 at 10:03pm: Sounds crazy doesn't it. Yup...exactly...seems to be the point ...repeated over and over and over and over and over and over..a real life GHD... Yet again, a surprising answer from someone who who has likely had thousands of "hits" with not one answer as to why. Yup...thousands...and it's a wonky hypothalamus... Seems like that would tick you off at the medical professin not me? I'm not ticked at you brother...I'm bored..something this site is decidedly NOT. The same thing over and over...with the tag that "sounds crazy, doesn't it?" Yup...again... Unlike you I firmly believe that medicine is a "practice". Hmmmm....where did you get that? What "medicine" doesn't know about ch is mind boggling....endlessly repeating a personal theory about ch doesn't make it compelling... At least we can agree on one thing....George is, among many others, a CLASS act that I aspire to... Best, Jon

[smiley=bow.gif] [smiley=bow.gif] [smiley=bow.gif] [smiley=bow.gif] [smiley=bow.gif]

Nobody ever got five before.

        Potter

Jeff Savage wrote on May 24^th, 2010 at 8:45pm:

Yet again, a surprising answer from someone who who has likely had thousands of "hits" with not one answer as to why. Seems like that would tick you off at the medical profession not me? Unlike you I firmly believe that medicine is a "practice".

You're repeating yourself, brother.

And you have no clue how I feel about the medical profession, nor do you have any idea about how I treat my condition. On both these topics you can zip it anytime.

I'm brand new here, but after trying so numerous things, I say if it did not go away and came back at another time-then it is not the miracle answer. I think I fool myself into believeing that some things shorten duration and avoiding things avoid attacks, but if I do nothing-who knows if it would have been the same length of time or the last one til next year? I think no one here is right or wrong, we all suffer unbearable pain and this appears to offer a place for suggestions for any remedy since we are all desperate. I would reserch claims, then maybe try them, but if I do nothing-I may have same results. There is too much mystery concerning this. From where does it come and where does it go?"

Jeff,

Your question of "what comes first"  is the BEST question.  I understand that there are rhythms and cycles regulated by the hypothalamus, but the fact that I get these headaches ONLY in the spring makes me think it HAS to do with pollen and some type of sinus problem.  Perhaps there is some type of unknown blockage in there year round... and then spring hits... pollen aggravates... and bam! clusters begin... until either the pollen subsides or the "blockage" comes out.   I just have to add that my cycle started this year after I power washed my house.  There was a ton of pollen and green algae on the side of the house.... That next morning was my first hit.   A question i have is:  What comes first, the headache or the nasal drip?  Could it be that while sleeping at night fluid is being produced and gets caught up there?  I find that the more fluid I get out, the closer I am to the end of the attack.  But, then again... it could just be a result of the headache...    Either way, I think it would benefit us all to keep an open mind because no one knows 100% what is going on.  Jeff, I believe you are on to something... maybe not for all cluster heads, but I personally can't get past the fact that I only get these in the spring.  There HAS to be something there.  Something that has NOTHING to do with biological clocks or  rhythms.   I believe in daily clocks and rhythms but every spring?  That doesn't make any sense to me.

Also, if it is strictly the hypothalamus, then wouldn't the pain manifest on both sides of the head?  Or at least vary from side to side?  In my case it is always on the left side.  Always.

Sorry.. wish i had posted this all together.  Jeff, I also have been using Afrin when an attack hits because I feel like it "opens" the passage up and allows the clear fluid to come out faster.  No idea if it is actually working, but its part of my "dance"  I am going to try the anbesol tonight.

Start reading: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

[quote author=706C6E66776A6E6670030 link=1274151078/74#74 date=1274787513]Start reading: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
  Good stuff.

     Potter

jmac wrote on May 25^th, 2010 at 5:52am:

Jeff, Your question of "what comes first"  is the BEST question.  I understand that there are rhythms and cycles regulated by the hypothalamus, but the fact that I get these headaches ONLY in the spring makes me think it HAS to do with pollen and some type of sinus problem.  Perhaps there is some type of unknown blockage in there year round... and then spring hits... pollen aggravates... and bam! clusters begin... until either the pollen subsides or the "blockage" comes out.   I just have to add that my cycle started this year after I power washed my house.  There was a ton of pollen and green algae on the side of the house.... That next morning was my first hit.   A question i have is:  What comes first, the headache or the nasal drip?  Could it be that while sleeping at night fluid is being produced and gets caught up there?  I find that the more fluid I get out, the closer I am to the end of the attack.  But, then again... it could just be a result of the headache...    Either way, I think it would benefit us all to keep an open mind because no one knows 100% what is going on.  Jeff, I believe you are on to something... maybe not for all cluster heads, but I personally can't get past the fact that I only get these in the spring.  There HAS to be something there.  Something that has NOTHING to do with biological clocks or  rhythms.   I believe in daily clocks and rhythms but every spring?  That doesn't make any sense to me.

Can I get an AMEN!!!!!!!
Thank you sir
Jeff

jmac wrote on May 25^th, 2010 at 6:15am:

Also, if it is strictly the hypothalamus, then wouldn't the pain manifest on both sides of the head?  Or at least vary from side to side?  In my case it is always on the left side.  Always.

Seems fairly odd to me that a reactive center of your brain does anything other than react, Maybe to outside stimulus or something?

Jeff Savage wrote on May 26^th, 2010 at 7:42pm:

jmac wrote on May 25th, 2010 at 5:52am: Jeff, Your question of "what comes first"  is the BEST question.  I understand that there are rhythms and cycles regulated by the hypothalamus, but the fact that I get these headaches ONLY in the spring makes me think it HAS to do with pollen and some type of sinus problem.  Perhaps there is some type of unknown blockage in there year round... and then spring hits... pollen aggravates... and bam! clusters begin... until either the pollen subsides or the "blockage" comes out.   I just have to add that my cycle started this year after I power washed my house.  There was a ton of pollen and green algae on the side of the house.... That next morning was my first hit.   A question i have is:  What comes first, the headache or the nasal drip?  Could it be that while sleeping at night fluid is being produced and gets caught up there?  I find that the more fluid I get out, the closer I am to the end of the attack.  But, then again... it could just be a result of the headache...    Either way, I think it would benefit us all to keep an open mind because no one knows 100% what is going on.  Jeff, I believe you are on to something... maybe not for all cluster heads, but I personally can't get past the fact that I only get these in the spring.  There HAS to be something there.  Something that has NOTHING to do with biological clocks or  rhythms.   I believe in daily clocks and rhythms but every spring?  That doesn't make any sense to me. Can I get an AMEN!!!!!!! Thank you sir Jeff

Life's more fun as the driver than the passenger.

You're muttering to yourself.

         Potter

Redd wrote on May 24^th, 2010 at 8:41pm:

Jeff Savage wrote on May 23rd, 2010 at 1:06am: Thank  some folks coming out to play I'm done "playing".  Obviously Jeff has all the answers and the hundreds of years of collective professional sufferers accounts will not dissuade his know it all additude. Plain and simple, if there is an infection at the root of the headaches, it's not "Cluster Headaches".  It's a condition that mimics clusters. I'm outta this debate. Edit to add: Jeff one last thing.  You're sugar coated belligerence is not lost on us.  Here is my assessment. You had a sinus infection.  You don't suffer CH.    Feel blessed, and have a great pain free life.

Normal, artificial, in vitro, and in one case immaculate.

4 causes

same diagnosis

pregnant.

The cause of these is yet unknown. The diagnosis is made from the symptoms.
I have been clinically diagnosed with CH. If you want to call and straighten him out:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

If you need me to get you a HIPPA release let me know.

As far as my sugar coated belligerence goes, If it's any consolation it drives my wife up the wall too, bless her heart. Oddly her irritation seems to escalate in proportion with the amount of logic applied to the argument. Funny how that works

Well no wonder...you have faulty logic, and any reasonable person would certainly find you belligerent.

The fact that you have confused regulatory and reactionary in regard to the function of the hypothalamus is but one of your down falls.


Quote:

The main function of the hypothalamus is homeostasis, or maintaining the body's status quo.What Is The Hypothalamus? The Hypothalamus is the control center of all autonomic regulatory activities of the body. It has been said that the hypothalamus is the brain of the brain.  It is the hub for  automatic and endocrine homeostatic systems such as cardiovascular, temperature, and abdominal visceral regulation. It manages all endocrine hormonal levels, sensory processing, and organizing body metabolism, as well as ingestive behaviors. It appears that almost everything the Hypothalamus does is related in some way to the management of brain and body connection, linking the psyche (mind) to the body .

Unless English is not your first language, this is clearly definitive as a regulatory function.

Now PLEASE...you don't have to go home, but most of us don't want you here.

Edit to add:  Additional definitions to illustrate.

Ok..yes I'm done. 

But Pegg...he Soooo loves to hear himself talk.

  This is getting too ridiculous for words.  Can we all just stop posting to this inane-ness?  He seems to have to have the last word..lets let him.  And move on to more intelligent discussions.   ::) ::)

One cause (sperm cell enters egg), one diagnosis: pregnant.

Four different methodologies.

There's your flaw.

jmac wrote on May 25^th, 2010 at 6:18am:

Sorry.. wish i had posted this all together.  Jeff, I also have been using Afrin when an attack hits because I feel like it "opens" the passage up and allows the clear fluid to come out faster.  No idea if it is actually working, but its part of my "dance"  I am going to try the anbesol tonight.

Careful on the Afrin. Studies show that over use can actually have the reverse effect.

Also, my first post said that "it worked for me" because it had done just that . Later on I asked someone how, if this is solely a neurological malady a topical anesthetic possibly work to relieve the pain. The more logic applied the more things fall into place. Odds are that unless you are in exactly the same place in this sequence of events as I was when it worked for me, it probably won't work for you. In my case, had I tried the same concoction even a week earlier it probably wouldn't have worked  because the mass would have prevented the anesthetic from reaching the affected tissue. I hope you are lucky and it does give you some relief. Either way I STRONGLY suggest that you go see a Rhinologist to have a thorough exam of the tissue at the highest point within your nasal passage. They are specialist in this small area. They have the tools and expertise to do this type of exam.

If you make the appointment I STRONGLY urge you to refrain from acknowledging up front that you have cluster headaches or you'll likely get referred to a neurologist.
Regards,
Jeff

Linda_Howell wrote on May 26^th, 2010 at 8:57pm:

But Pegg...he Soooo loves to hear himself talk.   This is getting too ridiculous for words.  Can we all just stop posting to this inane-ness?  He seems to have to have the last word..lets let him.  And move on to more intelligent discussions.   ::) ::)

OK.  I am sad because I was going to ask for the HIPPA release so I could talk to his doctor. 

There goes my fun.

:-X

FramCire wrote on May 26^th, 2010 at 9:07pm:

Linda_Howell wrote on May 26th, 2010 at 8:57pm: But Pegg...he Soooo loves to hear himself talk.   This is getting too ridiculous for words.  Can we all just stop posting to this inane-ness?  He seems to have to have the last word..lets let him.  And move on to more intelligent discussions.   ::) ::) OK.  I am sad because I was going to ask for the HIPPA release so I could talk to his doctor.  There goes my fun. :-X

And an allergist is THE final authority on CH....
Just like Fiengold the allergist was convinced food and environmental allergies were the root of all cases of ADHD.  PET scans proved that theory wrong 30 years ago, but people still want to believe it.

Redd wrote on May 26^th, 2010 at 9:13pm:

FramCire wrote on May 26th, 2010 at 9:07pm: Linda_Howell wrote on May 26th, 2010 at 8:57pm: But Pegg...he Soooo loves to hear himself talk.   This is getting too ridiculous for words.  Can we all just stop posting to this inane-ness?  He seems to have to have the last word..lets let him.  And move on to more intelligent discussions.   ::) ::) OK.  I am sad because I was going to ask for the HIPPA release so I could talk to his doctor.  There goes my fun. :-X And an allergist is THE final authority on CH.... Just like Fiengold the allergist was convinced food and environmental allergies were the root of all cases of ADHD.  PET scans proved that theory wrong 30 years ago, but people still want to believe it.

He is entirely qualified to make the diagnosis and refer a patient to a neurolgist. Who, I might add have been doing a bangup job of solving the mystery.

This is getting too ridiculous for words.  Can we all just stop posting to this inane-ness?  He seems to have to have the last word..lets let him.  And move on to more intelligent discussions.

I agree 100%. All I stated in my first post was that I had found something that worked for me to relieve my headaches. I even referenced events in detail that led me to that observation. All for the sole purpose of inquiring whether or not anyone else that had also been diagnosed with CH had observed anything similar.
Not exactly sinister in my opinion.
If you read the post without reading the factual events that led to that statement available via the link and formed an opinion about me because of me that’s not my problem.
What is curious to me is the ire that I have sparked. Why is it so important to you to set me straight?
I had a physical event that led to the reduction of my headaches by 95% and getting better every day. That would imply that in my case, although diagnosed with CH based on my symptoms, mine wasn’t neurological.
I thought that it would inhumane not to offer that on the outside chance that someone would recognize anything in the chain of events that I described and at least go eliminate that POSSIBILTY.
Damn me for that. I can’t believe I had the nerve to be so bold to post fact.

Since that time, with a few exceptions, I’ve been hammered by an elitist bunch of patients trying to set me straight.

Until someone asks the question
“Is it “POSSIBLE” that the noted deviations in the Hypothalamus of chronic CH patients are acquired? Is it possible that they are merely a byproduct of years of the higher brain associating incredible internal pain with normally busy but quiet part of the brain that controls mood, anger, and violence while in not only a hypersensitive state but also exhausted? Could this patterned ABNORMAL association POSSIBLY cause this portion of the brain to be so incredibly over stimulated hit after hit, night after night, year after year that it might actually be mutated due to heat or electrical impulses?
Someone ought to ask that question.

To many folks relief, this will be my final post.
As moderators it should concern you that a member would make a comment like angela40 did:

Jeff,
I am new to this board and avoid posting much (I'm sure you can figure out why).

Hope everyone has a great life including the antagonistic. Mine is much more pleasant these days without ever stepping foot into a neurologist’s office.

Potter: Thanks for what you gave back then x 2. You gave more than I’ve probably got. Hope like hell something over there didn’t cause what led you to this board. You have my utmost respect. Thank you.

Later

To many folks relief, this will be my final post.

[smiley=deadhorse1.gif]

And all God's children said Amen.

Bye.

Best,

George

Quote:

Why is it so important to you to set me straight?

Because, believe it or not, you are not the last newbie that will come here. It's kind of a big deal to us that newbies get the real scoop on what this condition is and is not.

Have a PF life.