weatherman
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Posts posted by weatherman
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I concur with you guys. The disconnect between businesses scrambling for dollars and the members of organizations searching for insight, relief and possible cures for "really crappy medical conditions" is all to apparent.
Internet advertising has invaded every possible source that you can pull up on a computer and is unfortunately here to stay. It just sux!
In fact, I think lousy Internet ads are another trigger for me. >
CHS says it best ..... "Just ignore it". Most others disregard it too.
weatherman
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Hey there Tyke,
I've only enjoyed the pleasures of being a chronic Ch'r for about 5 years now, no where near as long as some of the other folks here. The variation in frequency, intensity and duration (for me at least) has been pretty mild compared to the stories from other's in this group, but it is definitely there. No explanation or amount of tracking can yeild an answer for me.Â
The known triggers will usually cause CH, but not always. And sometimes no triggers are needed for full blown onset. The Beast is quite baffling.
The pressure variation seen in typical storms is much less that what usually triggeres CH for most of us. Driving from valley to mountain and flying in airplanes is a much greater reduction in atmospheric pressure than even the strongest storms. Granted our individual sensitivity to these triggers is different and certainly varies over time, it is doubtful that changes in the weather could cause such a nightmare for you.Â
A hot day, say 90F (32C) with two cold beers will send me screaming. I can only dream of the day when two glorious pints of Guiness will pass across my lips.
How'd that test go with the Stella's? Hope you're enjoying the nice, fat ridge of high pressure over England through the end of the weekÂ
weatherman
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Only tried energy drinks ONCE prior to using them for reducing the effects of CH.
Mixed it with a beer, chugged it down, then threw up. Does that count as getting "hit"? Just kidding, I've always avoided those and don't seem to get any added benefit from chugging a cold one when the shadows arrive.
Ice water works just fine for me.Â
weatherman
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Great Survey! Hope is yields some good results.
I don't believe I've ever experienced a K10 clusterheadache. K9 had me almost paralyzed, unconscious and scared to death. That was before being diagnosed. Would have called 911 if I was able. To me, K10 is the end.
I've seem my share of burns, cuts and a few broken bones. Can't say I have had to deal with most of the items on the survey, maybe just lucky ...... but no pain I have ever encountered even comes close to that K9. Not even sorta close.
You are correct, the randomness, lack of apparent physical injury, rapid onset of pain and the duration ...... make this difficult to compare to other injuries. To include ALL of these factors, I think only a difficult birth or kidney stones are close.
I've seen both and they looked like I felt during the K9.
Can't wait to see the conclusion ......
weatherman
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and one more Beast is kicked in the arse!
GREAT NEWS!!! Wishing both of you continued success and PF days.
weatherman
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Gotta agree with these guys....
The high-flow O2 is a GAME CHANGER. Get it anyway you can, prescription or local welding supply. The Optimask is also a must. It will make life bearable until other methods can be obtained.Â
CHFather will soon arrive with all the recommendations. He's our local "guru de O2" and will certainly provide the details. Good luck, I know it will work!
Wishin' ya pain-free days ahead!! Â
weatherman
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My favorite is the Fujita Scale for tornados. I think the apparent injury due to the pain (nerve cells firing), could be similar to structual damage incurred by winds.
Light Damage
Moderate Damage
Significant Damage
Severe Damage
Devasting Damage
Incredible Damage
Just kidding, but had to toss the weather-related scales in there too. Â
An idea did strike me though seeing MG's post with the Richter Scale. Since it is logrithmic and not linear (two is ten times greater that a one, three is 100 times greater that a one and four is 1000 times greater that a 1) ..... maybe we need some sort of multiplying factor as the numbers increase?
Just a though, Ok ... too much coffee tonight.Â
I like the idea of comparing CH pain to more common pains most people are familiar with. Again, just a thought............
weatherman
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Potter...
GREAT that you shared that photo. It demonstrates exactly why we are trying to improve the KIP Pain Scale. CH agony cannot be seen, except of course by witnessing someone go through an attack. Personally, I can't watch it .... just freaks me out.
But the visual of an injury IMMEDIATELY promotes a response. OK, I thought ..... "HOLLY CRAP ... that must have hurt!"Â
We need to get this type of connection (at least with doctors) through our scale of pain. The general public would understand, while the medical community will surely need a little more convincing.
Can we querry one of the admins for approval to submit a survey to the members, once a final version of the Pain Scale is drawn-up?
I totally agree w/ Purp that it should go to the "big audience" for suggestions, ideas and approval. No doubt, there will some very interesting comments.
MG .... That linear scale comparing the popular headache types .... with "shadows" added is OUTSTANDING! You've got this one very close to perfection in my eyes.
weatherman
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Moxie, Purple
I totally applaud you for the efforts in trying to improve the Kip Scale.
All we want is the ability to effectively communicate the degree of suffering encountered with CH. How each of us hurt must include individual experience, which naturally varies depending on our progression of the disease and tolerance for pain. Room for discrepancies can certainly be built it.
The most important aspect is to make definite comparisms to other types of pain, like injury, child-birth, burns, other common headaches, etc. Although these vary tremendously also, at least PEOPLE NOT AFFECTED BY CH will be able to understand. Perhaps then, true sympathy may be obtained, expecially from the medical community. Then, attention may be turned to effective treatment.
Most of the medical consideration is directed to the "top 3-4" killers; heart disease, cancer, respiratory and stroke, etc. Only the death rates (and of course profits gained by treatment) are considered. NO FACTOR OF PAIN IS ACCOUNTED FOR!
If even 10% of doctors, Big Pharm Mgmt and polititions could experience a K8-9 CH, we'd probably have better treatment now.
Good job guys, lets make this "new and improved" Pain Scale a product we can all use and hopefully get benefits from.
weatherman
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I also don't believe in the K10 pain level. That's the absolute upper limit of agony that leads to death or at least unconciousness. There are only very few people who could handle that and survive .... although they'd surely be clusterheads. I hope to never see that level.
Yes, the KIP Scale is WAY to vague to be useful. Should only a few levels of misery ..... small, medium and large. I've found that in tracking my CH it's difficult to distinguish between levels and the Beast always skips a few or starts at K4. It is fun to try and over-analyze. I've come up with this one ....
BradleyÂ’s Intensity Tracking of Cluster Headaches
This is my version of ClusterBusterÂ’s famous KIP scale for pain.
Refined, added to and personalized. It's the BITCH scale.
Pain Level  K=0   NO PAIN  ;D
                  Simply put, Life is Beautiful
Pain Level  K=1   SOMETHING IS HAPPENINGÂ
                  First realization that Head Ache is forming
                  Slight Pressure in Head and Sinuses, very low grade pain.
Pain Level  K=2   STANDARD HEADACHE IS HEREÂ
                  The Shadows become steady, pressure increases.
                  It’s Time to start O2 and get to a safe place
                  Avoid work, driving and people
Pain Level  K=3   CONSTANT STRONG SHADOWS :-/
                  Becomes an intense regular headache, hot flashes
                  Very Strong Sinus Pressure and Head Pain
Pain Level  K=4   THE BEAST WANTS IN :-[
                  Cluster Headache begins with knife in the eye
                  Tearing and restlessness occurs
                  All abortives attempted
                  Agitation ramps up with pacing and shutting off outside world
Pain Level  K=5   THE KNIFE STARTS TO TWIST :'(
                  Strong stabbing Eye Pain with swelling and Congestion
                  Completely Unable to stop holding head and sobing
                 Â
Pain Level  K=6   THE BLADE IS SALTED AND ELECTRIFIED :-X
                  May be Woken from sound sleep
                  Diminished senses (sight and hearing) and panic begins
                  Relief is mandatory. This is the beginning of HELL
Pain Level  K=7   SHEAR AGONY FOR AN HOUR [smiley=cry.gif]
                  All relief options fail. Pain becomes unreal and reaches
                  highest levels of bare-ability
                  If you can ride it out (and it doesn't get worse) you'll collapse
                  with complete exhaustion and fall asleep
Pain Level  K=8   VERY SEVERE CH. INTENSITY BECOMES UNREAL  :exclamation
                  Rocking, cursing and yelling. Some weak convulsions occur
                  Reality starts to fade. Cannot stand or sit. Consciousness
                  fades in and out.Â
Pain Level  K=9   "WHE ME" Syndrome sets in
                  Pray to God for relief, you actually believe that you will die
                  Hopelessness, depression and fear becomes prevalent
                  Pain becomes very clean and almost spiritual, over-taking
                  your entire existence.
Pain Level  K=10  ER TRIP or CALL 911 if you are ableÂ
                  Cannot move or speak. Complete loss of senses,
                  Feelings of Suicide. Near-death sensations.
On the concept of SHADOWS .....
I think there is a progression of events .......environment, body chemistry, physical effects, then symptoms that lead to a good CH.  Sometimes the stars just don't line up right and the initial stages develop, but don't lead to a full-blown attack.
I'll get the congestion, tears, red-eye and dull pain, but sometimes never a CH.
It's the knife in the skull that defines CH for me. All other symptoms are just a regular headache or "shadows"
weatherman
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Keep a journal with basic entries .... time of day, intensity and possible triggers.Â
You'll learn very quickly how your CH is affected by the environment, what you eat and drink, stress levels, month of year, etc. Finding the triggers is instrumental in avoiding the unintentional setting off of an attack sometimes. All the other times ..... at least you'll be ready with abortives.
Best of luck and wishin' many pain-free days to come your way......
weathermanÂ
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Hi ann,
Welcome to the "unluckiest" club in the universe. You'll get some great advice here that undoubtedly beats anything from most doctors. I found that out quickly. Some day that may all change, but it's a sad reality for most.
There are lots of treatments that seem to have varying effects on CH. I'd say give 'em all a try and sooner or later (hopefully sooner) you will find something that at least lessens the intensity, duration or frequency. With any luck, and there are those who will testify, you'll find almost complete relief for significant amounts of time.
Whatever you do, don't give up trying! This group has experienced every imaginable situation and treatment you could think of.  Ask questions, throw out the occasional rant if needed and above all else .........
Tell us what works and what doesn't!
Good luck, hang in there and don't lose hope ...... it WILL get better!
weathermanÂ
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Bob is still the most amazing advocate for us CH'rs.
He's even more awesome in person.
Wholly Cow! ..... Did he say there were 400,000 people in the US with CH?!
weatherman
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MG-
Also sending applause [smiley=vrolijk_26.gif] on the pain-free run. That has really got to feel great! I am so very jealous.
Pain is like happiness, there is no measure of how great it is, or how to compare it to others observations. I guess that's why it can be faked so easily. The ability to comprehend suffering is a combination of our individual encounters and our tollerance for knowing our limits of "high and low" values. Life always seems to dish out something that stretches those limits every once in awhile.
I've seen people cry like a child over a scrape and another barely whince after having a hand completely smashed. Some of the poorest and most disadvantaged people in the world are the happiest. Others with all the wealth, status and prosperity possible are miserable. No way to really see "what's going on inside".
Its a debate that no one can win and just leads to frustration. It sux when someone compares your CH to something they have experienced, but you haven't (like child birth). That's why pain in all forms generates powerful emotions and the all desiring wishes to end it.
Pain intensity is hard to imagine, but duration is understood by all. Tell them it's like having a baby 5 times a day for a month .... they might get that.
You have great rants, keep 'em coming! Â
weatherman
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spiny
Here's hoping for a good ride through the altitude changes. I'm wishin' for a big 'ole ridge of High pressure to come your way.
Nothing like the double whamy of having to combine one of life's crappy ordeals (like surgery) with the pleasure of CH. You must be one tough lady!
Hang in there kiddo, we're with ya all the way!!Â
weatherman
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There are no stupid questions Â
Dealing with a rare illness that is known for horrific pain, undiscovered causes and no known cure .......
There are REALLY no stupid questionsÂ
The seasonal variation on the Earth's surface, which is indeed greater in proportion to the distance from the Equator, is represented mostly by the amount of daylight hours per day. Temperature and pressure differences are also present, as a direct result from less/more hours of sunlight.
Surely, there is some relationship in CH cycles beginning/ending (especially for the Episodics) based on the light available for the beginning and ending of these Equinox periods. Fall and Spring are several months after the largest raises and falls in light variation, mostly in the mid-latitudes where we all live. I would guess that the Equinox times have there highest effects on the body because of the lag time that is typical for all of Mother Natures forces.
Again, if we had some sort of simple data base on us clusterheads ....... where we live, frequency and intensity of CH.  CH could then be correlated to any weather/seasonal phenomenon.
I'm chronic, no such seasonal perks for me :'(
weatherman
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Brad,
No better feeling than when the Beast starts to depart. Dang, 11 months of daily torture is a lot to endure. You must be a tough mofo!Â
Wish you the best of luck and DON'T GIVE UP! POSITIVE THOUGHTS!
weatherman (Brad)
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Hmmm ..... Intranasal ketamine, haven't run across that one yet.Â
Initial research shows NMDA receptor antagonists for the treatment of chronic pain appear to be a very interesting possibility. Effectiveness with little side affects?
Gotta check with my Neuro on this one. THANKS Ricardo !!!!!
weatherman
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How do all of you avoid (or at least try to minimize) the frustration that a spouse / family member / partner feels when the Beast arrives?
I'm chronic and this is the "low time of year", getting hit every other day with K4-6 HA. Typically abort immediately with O2 when at home. I bust with as much MM as I can fit into the schedule, which is weekly, and do not use prescription meds. I'm also on the D3 regiment and use RC seeds every month or so.
The problem is when traveling, either out of town, or just shopping for the afternoon. I keep O2 in the car, but it's not always convenient (or allowed) to carry it. Running back to the vehicle several blocks for relief can be a pain in the arse. Afternoons (1-3 pm) are the Beast's favorite.
I suffer through the agony for an hour or so, get ice water and try to move around. 90% of the time it subsides, then exhaustion sets in. When my wife sees me suffer like this, she gets really frustrated, tries to help, then I hear later about how we never should have gone anywhere. She is becoming hesitant to travel with me and criticizes me for not being pro-active enough in preventing CH from "spoiling our day". Historically, she has been a great supporter.
   Would you carry the Imitrex and fire-away as soon as CH is noticed?
   Should I just run and hide when the Beast arrives?
   Is leaving home just a bad idea during likely "Hit Times"?
   (just kidding, I'd never let the Beast get that much control over me)
   Should I tell her to chill-out and leave me alone?
Thanks ahead of time for any suggestions and listening to the rant Â
weatherman
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DT,
You also have my condolences for the loss of a best friend. I know my two dogs have been very comforting when I've battled with the Beast. They just seem to understand what pain is about. No need to explain anything to them.
Read an interesting article on "First Occurances of CH" being triggered by strong emotional effects ..... including orgasm! It's from 2006.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2077732/
The variation in body energy (especially the down swings) really appears to be connected to chemical changes internally. Resting after a long day, emotional pitfalls and even sleeping at night must send a full blown news bulletin to the hypothalamus. Tears are just one of the results of a huge emotional slump. I always get them during and after a CH. Figured it was just the juices from my eyeball getting squeezed from the skull.Â
Anyway, a toast to your buddy (coffee in hand)Â [smiley=beer.gif]
Hang tough and many PF days to you........
weatherman
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It would be facinating to see a map (US or maybe Europe) that had CH occurences plotted like the weather.
CH events and KIP intensity could be drawn similar to isobars (except they would be equal lines of pain/intensity) and then over-layed with the surface weather charts. Put those combined plots together set them in motion .... watch CH move across the country, as storms do? You could actually see how temperature and pressure changes affect CH.
Could bring CH prediction to a whole new level, especially for those barometrically-challenged sufferers.Â
Hmmm ..... if I could get the CH diaries from suffers in a half-dozen regions about the country ????? Interesting stuff that has me thinking already.
weatherman
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Hey there jimmys .....
Welcome to the "pressure drop, then run for O2 club". We can hide from Mother Nature's heat, cold, wind, rain and snow ...... but there's no escape from dropping atmospheric pressure. Dang, it's the weather variable (besides heat maybe) that just kicks our butts and is definitely a CH trigger for me too.
Unless you're like ricardo ..... I wonder if he ever build that hyperbaric chamber?
Natures air pressure drops are usually much less than driving to the mountains or flying in an airliner. You can get many days notice of these fluctuations, but what can you do? Might as well just sit back and have a beer, then load the Imitrex.
Good luck forecasting and wish you many pf days..............
weatherman [smiley=vrolijk_1.gif]
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Glad you had a great trip!
We'll not let the Beast mess with our enjoyment of life ..... EVER!
I spent way too much time (in the early days of my CH) trying to avoid situations that would inconvenience or embarrass me. Learn your triggers, keep the abortives handy, bust when the cycles are highest and keep in mind safe places to ride out the worst times.
Best approach is to stay ahead of the Beast and attack when he's the weakest.
It's definitely an enlightening experience and just another weapon in your arsenal.
weathermanÂ
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Hey CHS,
Your efforts to increase awareness about CH are impressive and you certainly do stand out as the potential Poster Child for all of us sufferers. I know I couldn't handle half the ordeal you have been through. Indeed, an interview with someone that has seen almost every angle possible from this crappy condition might be the "golden ticket" to kicking the cognizance factor into high gear.
This is why so many have said that we need a famous person (or at least well recognized in the public's eye) to have this affliction and step up to the plate. There are many examples of this happening with other diseases and conditions. So many average Joe's in the world suffering even worse fate than CH, and no news company is interested in them. Simply not a good enough "hook" to get the public's attention. And that's what CNN is in business for, to get our attention.
But is CNN really the way to go? They are primarily interested in eye-catching theater that has a flair for the dramatic. Their position as a vehicle for news and information has not existed in many years, if it ever did.  Dr. Gupta is probably only one of the few people in the entire organization that might understand CH, and there has to be a "public interest angle" for him to get involved. It would seem that he's simply NOT interested in the suffering of a relatively small group of people.
Your blog, videos and website are excellent in covering all that CH has to offer, but the general public (and even Big Pharma) cannot get sympathy or dollars from us.Â
It's either average people doing incredible things, or incredible people doing average things, that sell an idea or product. We just need the angle.
Best of luck in your endeavors, I'm certainly behind youÂ
I wrote Gupta with tweet, and Facebook note, can't wait to see the reply.
weatherman
Getting all jazzed up for Chicago!!
in General Board
Posted
The Weather Gods will be smiling on CH'rs in Chicago!
Heat and humidity currently across northern Illinois will depart just in time for our arrival. It's 94F with 60% humidity this Monday afternoon (Heat Index of 108F).
After cold front passes over the region on Wednesday, cooler and drier conditions will prevail through the week, as a big 'ole fat ridge of High pressure dominates the entire Great Lakes area into the weekend.
That's great news for all the "weather affected" CH'rs planning on going to the Conference. My wife and I will cya there .................
weatherman
ps ... b.g. , bring a notepad. Lots of great info and people to keep in touch with.