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Topic: new to site, couple ?'s (Read 4949 times) |
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Melissa
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Re: new to site, couple ?'s
« Reply #25 on: Dec 27th, 2005, 6:35pm » |
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Here's a film of a fellow CH'er having a Cluster Headache attack. If there is nothing in what you see that you can be familiar with, then it is very possible that you do not have clusters...
WARNING: File is very graphic...
http://www.clusterbusters.com/chuckattack2.wmv
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Sean_C
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Re: new to site, couple ?'s
« Reply #26 on: Dec 27th, 2005, 6:59pm » |
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on Dec 27th, 2005, 6:19pm, cardogman wrote:Sean and Tom,
Let's play Headache Specialist and Neurologist. But before we do that find out if it is possible to have mikd cluster headache all day. I think you will find out that it is.
So here we go
1. Drooping eye
2. Red Sclera
3. Eye weeping
4. Pain on one side of the head radiating in to the eye and forehead on that side and sometimes in to the ear.
5. Discomfort at the base of the neck on the affrected side.
6. Pain around the temporal area.
7. Sometimes it stays with me 1-2 hours sometimes most of the day/
8. Sometimes responds yto Oxygen.
Now what's ypour diagnosis Sean and Tom. I would love not to have this malady. However as they say if it walks like a duck and quacks like a duck it a duck.
Two headache specialists and two Neurologists say yes.
As Bill O'reilly would say What Say You.
Burt
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What is Hemicrania Continua?
Hemicrania continua is a rare form of chronic headache marked by (4., 6. & 7.)continuous pain on one side of the face that varies in severity. Superimposed on the continuous but fluctuating pain are occasional attacks of more severe pain. Symptoms fall into two main categories: autonomic, including runny nose, (3.)tearing, (2.)eye redness, eye discomfort, sweating, and (1.) swollen and drooping eyelids; and migraine-like, including nausea, vomiting, and sensitivity to light and sound. The disorder has two forms: continuous, with daily headaches, and remitting, where headaches may occur for as long as 6 months and are followed by a pain-free period of weeks to months until they recur. Most patients experience attacks of increased pain three to five times per 24-hour cycle. This disorder is more common in women than in men. Physical exertion and alcohol use may increase the severity of headache pain in some patients. The cause of this disorder is unknown.
Is there any treatment?
Indomethacin, a non-steroidal anti-inflammatory drug (NSAID), usually provides rapid relief from symptoms.
Other NSAIDs, including ibuprofen, celecoxib, and naproxen, can provide some relief from symptoms. Amitriptyline and other tricyclic antidepressants are effective in some patients.
What is the prognosis?
Patients may obtain complete to near-complete relief of symptoms with proper medical attention and daily medication. Some patients may not be able to tolerate long-term use of indomethacin and may have to rely on less effective NSAIDs.
Burt, I'm just trying to help you the best I can. I thought you would of opened the link but I guess you didn't so I high lighted areas that pertain to your headache as you described them. It is not uncommon to be misdiagnosed with clusters if you have Hemicrania Continua, I went 10 years chronic before I was diagnosed by a competant nuerologist.
Please print a copy of the actual link I gave you and bring it with you to your Nuerologist and give it a go with the Indo. It may actually stop your headaches dead in there tracks  Remember all birds have feathers, however not all are the same species.....................................tweet tweet
I honestly do not believe you suffer from CH, and I hope I'm right and you'll find relief soon.
Cheers 
Sean....................................
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| « Last Edit: Dec 27th, 2005, 7:16pm by Sean_C » |
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cardogman
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Re: new to site, couple ?'s
« Reply #27 on: Dec 27th, 2005, 10:06pm » |
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Ladies and Gentleman,
Been there done that. I have had episodes like that but not this go round. Now if you want to quote text book descriptions of Cluster Headaches that's fine but there is a definite version of a cluster headache that is not a 10 there ones that are 2, 3, 4s and it depends on how you tolerate pain folks.
It's amazing you go to a site after you have been diagnosed by two different headache specialists and people are debating me and the CH. This is absolutely unbelievable.
I guess you have a monoploly on this malady. Congratulations. hahahahahahahahahahaah
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Sean_C
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Re: new to site, couple ?'s
« Reply #28 on: Dec 27th, 2005, 10:33pm » |
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on Dec 27th, 2005, 10:06pm, cardogman wrote:Ladies and Gentleman,
Been there done that. I have had episodes like that but not this go round. |
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Go fuck yourself Burt, your a phoney and I know it. You wanna be's are all alike, you love to hear yourselves talk.
I offered you valid information and now you withdraw it as if its a farse. My guess is you haven't looked into shit OK. Next time before you enter a site READ the note on the front door. This one says no meegrainers need apply.
Sean.................................................
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E-Double
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Re: new to site, couple ?'s
« Reply #29 on: Dec 27th, 2005, 10:40pm » |
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Burt,
Keep a thorough journal and when you go to NECH describe completely what it is you are going through.
It is very possible that other things are going on as well and honestly the knowledge here is like no where else!!!
Many here know more than many of the the so called headache specialists that have us in and out of their offices.
There are some docs who do know their CHit yet many do not.
Good luck and give me a holla if ya need.
E
edited for brain farts
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| « Last Edit: Dec 28th, 2005, 8:10am by E-Double » |
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I can't believe that I have to bang my
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But the blows they have just a little more
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Gonna take a breath and try again.
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MJ
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Re: new to site, couple ?'s
« Reply #30 on: Dec 28th, 2005, 12:06am » |
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Hockeyhead.
I would think that teeth issues could certainly aggravate the CH as the nerves run in the same areas.
I know I shouldnt get involved in the rest of this thread but I will.
To Burt aka cardogman
maybe you should run a better description.
Yes, of course it is possible to have lower levels of pain. But generally with lower pain levels comes less duration of pain.
No its not possible to be a pshycological issue.
Yes it is not only possible but highly probable for 2 different neuros to misdiagnose you. (I went through many before a proper diagnosis).
Yes its possible to have all day headaches but they will be different than clusters.
I often have them and consider them regular headaches or migraines. they are different than CH and they can have many of the similar symptoms.
Extreme CH can run all day as well but it is a back to back type of issue. The CH will run its normal duration ramping up then allmost go away but return immediately. Not entirely uncommon with me. This is the reason they are called clusters, they come and they go in clusters. Seldom does the actual attack last longer than 2 hours, 3 and 4 hours are possible but rare. I Know.
The likliehood of living beyond a constant 4 hours without relief begins to diminish accordingly.
I personally never experience a burning sensation in my scalp, but thats me.
I would highly reccomend you do additional research. If it is clusters you have ok, but it wouldnt be right for you to recieve medications for something you may not have, when other meds may kick it right out of your life.
I am not debating just stating what I think I know and the others were as well.
MJ
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cardogman
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Re: new to site, couple ?'s
« Reply #31 on: Dec 28th, 2005, 5:17am » |
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Big Man Sean with little Man language. Listen Bro I spend most of my life in the Operating Room. I know more about medicine and probably this cluster thing then most. You are absolutely wrong about the pain of CH. CH can and will in some people fluctuate from being severe to almost nothing but a pseudo neuralgia. It can occur chronically throughout the day or episodically once per year or less and everything in between. Are you reading my posts with the symptoms I have or have you decided who and who doesn't have this problem. If you think in a million years that I woke up three weeks ago and said to myself, gee I'd like to have Cluster Headache Syndrome and wished it upon myself your nuts. Do you honestly think that I would want to be typing something on a computer to the likes of a foul mouthed miscriant like you.
I DON'T THINK SO SON.
The information you posted is right out of medical text and is incomplete for duration and intensity.
What's more important is the fact that you seem to have this need to bash people who don't agree with you. That's fine but you best not start in with the language with me cousin or your headaches might get worse. You need to calm down. Take some lithium that will do it. You sure you aren't Bipolar. hahahahahah
As for the dental thing. Usually occurs on the same side of the head.
As for the Psychological thing Sean you proved my point you are a Psycho and that's why you specifically have CH.
Be nice son.
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| « Last Edit: Dec 28th, 2005, 5:28am by cardogman » |
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BarbaraD
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Re: new to site, couple ?'s
« Reply #32 on: Dec 28th, 2005, 6:30am » |
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Back to Hock...
Yes, the tooth thingy is real. I've had surgery and don't have any feeling in the left side of my head (ch side) but still have tooth pain (figure that one out). No dental problems they can find, but still have the pain.
Topamax has worked for me (up to a point). I've just raised the dosage cause I'm having a really bad bout right now, but have been on it for several years (since 99) without too many side effects. I take it at night (the whole dosage). I don't get the dopey feeling that some experience, but forget some things (I'm old so I just blame it on that and write a lot of post it notes). It's been the ONLY thing that's worked for me.
I do the O2 and coffee to abort when at all possible. If it I hit over a 5-6 on the Kip scale I do cafergot and phenergan. Can't do the trex. You might try the O2 - it's been so good for so many of us. But read up on it and do it right. Get the proper mask and the right regulator. You can get the small tanks or the large ones.
As for the other stuff here --- some of us were not diagnosed right to begin with and spent several years going undiagnosed or improperly diagnosed. Beer triggered me for a while until I just started getting hit with a "brain tumor" all of a sudden and got to a hospital that did diagnose me properly. Then I was the proud owner of Clusterheadaches. Oh what a joyous day - I wasn't dying with a brain tumor - I could just live with CH! Lucky me.....
Hugs BD
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zwibbs/Scott
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Re: new to site, couple ?'s
« Reply #33 on: Dec 28th, 2005, 6:53am » |
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Barbara is 1,000% correct. I also had dental surgery and at first it appeared to calm the pain--but a week later I was off to the races once again. I also used to be able to have an alcoholic drink---beer--or--rum/coke---NOT THIS TIME. I also started on new meds this time and it took 3 weeks for it to start taking effect. My biggest fear came when I was in my twenties and had no clue as to what was happening to me . Having boxed for 7 years I feared the worst!!! But it took the great doctors in the NY Metro area over 10 years to diagnose CLUSTER HEADACHES.....I have the most respect for ANYONE who truly suffers from these gosh dang things.
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Redd
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Re: new to site, couple ?'s
« Reply #34 on: Dec 28th, 2005, 8:07am » |
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Cardoggy,
I will not argue over the pletora of ways that this disease can manifest in so far as periosidy (sp) but the IHS has formed the criterea as to the nature and duration of individual attacks.
While I'll go so far as to say that a rouge attack "may" on extreemly rare occasion last more than 4 hours, I challenge you to post any data from a reputable research facility that points to a single cluster attack ever lasting the course of an entire day.
You are barking up the wrong tree to come here and attemt to redefine the nature of this condition.
The cumulative knowlege of the sufferers here has pointed many people in the right direction to find relief from conditions that are NOT CH. I've personally been misdiagnosed for 20 years and seen neuros and HA specialists in the past. Don't put all your eggs into one basket dude, because it is very rare to find a neuro who knows his arse from a hole in the ground when it comes to this disease.
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BarbaraD
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Re: new to site, couple ?'s
« Reply #35 on: Dec 28th, 2005, 9:12am » |
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I don't normally get into this stuff, but......
CH is fickle -- we all SUFFER in different ways -- we all handle pain in DIFFERENT ways and we all VENT in different ways....
Now, as for me, I suffer from several different types of headaches CH being the top of the scale, but I also have meegraines as well as post tramatic concussion headaches -- sometimes it's hard to figure out which one is hitting until they reeve up past a 5 or 6.
As to the pain -- some of us endure pain better than others. I've lived with CH for so long that my pain tolerance is rather high and things that would put a stong man down are Mickey Mouse to me, but that doesn't mean that I don't hurt - I just tolerate it better than some do. We all have our OWN pain thresholes and it's personal to each of us - what works for one may not work for the next -- that doesn't mean it's right or wrong. It's just the way it is.
As to the duration of the pain -- Redd is right -- CLUSTERS is the word -- back to back headaches are COMMON - that's why they call them clusters folks. Yes, I've had "all day" headaches too - my neuro explained (slowly) to me that it was NOT the SAME headache but a CLUSTER of headaches - when one would end another would start. And yes, I wanted to die at the time. THe last few years, I've gotten a break in between - thank goodness, but I DO remember the others.
Now, it's about time to cool off some tempers and remember we're all different and we all suffer differently. That's the nature of this damn beast. What works for one of us may just not work for the next one. Now Hock asked a simple question about a toothache and Sean and Card, you guys have started World War III -- cool off and answer the question asked. I know you're both hurting, but so are all of us.
Happy New Year.....
Hugs BD
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Sean_C
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Re: new to site, couple ?'s
« Reply #36 on: Dec 28th, 2005, 12:22pm » |
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on Dec 28th, 2005, 5:17am, cardogman wrote:| Listen Bro I spend most of my life in the Operating Room. I know more about medicine and probably this cluster thing then most. |
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Thats a too funny DR. BURT  Another figment of your imagination we're going to have to deal with I guess.
Well first I need some information, as a medical proffessional like yourself Dr. Burt please post ANYTHING medically documented that says Cluster headaches last all day long. Give me documentaion of this and I will leave your sorry asss alone princess
Well doc???
As an extremely right winged idiot once said "What say you"???
Sean.................................
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Sean_C
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Re: new to site, couple ?'s
« Reply #37 on: Dec 28th, 2005, 12:25pm » |
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on Dec 28th, 2005, 8:07am, Redd715 wrote:You are barking up the wrong tree to come here and attemt to redefine the nature of this condition.
The cumulative knowlege of the sufferers here has pointed many people in the right direction to find relief from conditions that are NOT CH. I've personally been misdiagnosed for 20 years and seen neuros and HA specialists in the past. Don't put all your eggs into one basket dude, because it is very rare to find a neuro who knows his arse from a hole in the ground when it comes to this disease. |
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Spoken by a true clusterhead.
Thanks Pegg
Sean.............................
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Redd
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Re: new to site, couple ?'s
« Reply #38 on: Dec 28th, 2005, 12:29pm » |
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on Dec 28th, 2005, 12:22pm, Sean_C wrote:
Thats a too funny DR. BURT Another figment of your imagination we're going to have to deal with I guess.
Well first I need some information, as a medical proffessional like yourself Dr. Burt please post ANYTHING medically documented that says Cluster headaches last all day long. Give me documentaion of this and I will leave your sorry asss alone princess
Well doc???
As an extremely right winged idiot once said "What say you"???
Sean.................................
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I challenged him on this already Sean...I see he hasn't chosen to respond.
Pegg
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Sean_C
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Re: new to site, couple ?'s
« Reply #39 on: Dec 28th, 2005, 12:57pm » |
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on Dec 28th, 2005, 12:29pm, Redd715 wrote:
I challenged him on this already Sean...I see he hasn't chosen to respond. |
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He won't find anything, I still stand by my original post of Hemicrania Continua. He has the option of getting some relief Pegg, we gave him helpful resources to HIS condition, its up to the doctor to decide himself if he wants to seek relief
Sean..............................
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zwibbs/Scott
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Re: new to site, couple ?'s
« Reply #40 on: Dec 28th, 2005, 1:37pm » |
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my money's on sean
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burnt-toast
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Re: new to site, couple ?'s
« Reply #41 on: Dec 28th, 2005, 2:13pm » |
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You can lead a horse to water but you can't make it drink.
This CH club and its members are great, but the dues is way too steep. Give me a viable alternative and I'll be researching it in minutes - not fighting it.
Tom
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Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space.
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E-Double
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Re: new to site, couple ?'s
« Reply #42 on: Dec 28th, 2005, 3:18pm » |
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Just being devil's advocate so hear me out.
I also have multiple HA types. It's always a fun party in my head.
There were times that I would literally be having CH along with icepiks at the same time.
There were times when I wasn't in full blown CH but shadowing literally all day long.
There were times when "shadows" as I call them felt and do feel like a damn chemical burn running the course of the trigeminal nerve honestly the entire day. That pain sucks but is not a full hit yet it hurts. It fluctuates from bad to really bad yet not a full banger.
I have that today. O2 knocks down the pressure and some of the pain but the burn remains.
It may be a variant of some kind but it is something that I know that several here have.
It is possible to have more than one HA type going on, sometimes at once.
It think this dude has multiple types which honestly is no fun.
I don't pick sides.
I really don't care.
I hope everyone finds relief.
What I also do hope is that if I ever ask a question regarding another fucking variant that I may experience that someone won't tell me to find another support group (that is not meant for anyone specific, especially the Red-sucks fan )
With all my heart I wish everyone well.
Go get your teef pulled
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| « Last Edit: Dec 28th, 2005, 3:19pm by E-Double » |
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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cardogman
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Re: new to site, couple ?'s
« Reply #43 on: Dec 28th, 2005, 4:02pm » |
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This is getting to be great fun and for those who didn't think I would reply, sorry but some people actually go to work.
Now let's see where was I. Woke up this morning with no headache. Just that same old boring burning one sided scalp with the feeling like someone bopped me on my forehead over my left eye and temple.
Went to the the office and at about 1:30 here it comes. Eye starts to get heavy and droopy, headache starts probably a 3 and it's now 3:56 and it's still there. Not bad doesn't hurt really that much at all. I have had ones like this all day. I call them headaches you want to call them shadows what the hell do I care, it aint normal. No need to empty the oxygen for this one.
Cluster can be construed as an episode of any duration as long as it ends at one point and begins again at another point.
What bothers me the most and I am new to this site is the outright ridiculous ownership some of you like Sean thinks he has on Cluster Headaches.
Lets re-name the disorder the Seanache and he can be the President of his own Malady. lololololololololololololo
Burt
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seasonalboomer
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Re: new to site, couple ?'s
« Reply #44 on: Dec 28th, 2005, 4:17pm » |
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okay, now Burt, I think you're taking Sean's posts badly. I took his post to mean that "wouldn't it be great to not have these damn these things, and have something else, that might be treatable?" At no point have I read from his posts that he treats CH and this forum as some form of closed society. And many others have made great contributions that some of them suffer from 2 or, hell even 5 different types of headaches. So, maybe you're in with that crowd of "multi-linguals". You've lost sight of the fact that your description of a cluster lasting 4 or more hours is not consistent with any of the documentation or experience on this site. Does that mean you don't have cluster, hell I don't know. I wish you didn't. I wish no one did. If you've already gone the route of indo and Sean's posted suggestion, just say you've already barked up that tree and the cat wouldn't come down. But, to rail on about how we aren't welcoming or helpful, or rude, you might look at the three fingers in your hand pointing back at yourself when you start pointing like that.
scott
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Sean_C
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Re: new to site, couple ?'s
« Reply #45 on: Dec 28th, 2005, 4:20pm » |
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You back pedal your way through everything don't you
You don't have any back up for your claims, you bounce back and forth with your symptoms and you dismiss everyone elses opinions but your own. Do yourself a favor Dr. Burt, get treatment for your disorder and get a life. We don't need people who don't have clusters giving advice to tose who desparitely are in need.
Your almost troll like in nature I swear.
Sean.............................
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cardogman
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Re: new to site, couple ?'s
« Reply #46 on: Dec 28th, 2005, 4:59pm » |
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Oh please help me with my seanaches. I have such a terrible problem lololololololololololololololololololololo
Geez you are absolutely pathetic.
I'm so glad I found a site where people are willing to tell me to fuck off.
Thst's just great and all you folks think that's just fine.
See ya
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Grandma_Sweet_Boy
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Re: new to site, couple ?'s
« Reply #47 on: Dec 28th, 2005, 6:47pm » |
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Given you apparently spend most of your life in the operating room - perhaps on your next shift, you could ask the surgeon in charge to open you up and do a small attitude adjustment.
Seems to me that Sean was trying to have you look beyond the end of your nose to some other possibility that could be treated in another fashion.
Perhaps you'd do well to read more, and write less.
Carol
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cardogman
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Re: new to site, couple ?'s
« Reply #48 on: Dec 28th, 2005, 9:26pm » |
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Hey Granny since your a lady I won't repeat what this guy Sean said to me. Read his posts and have a nice day.
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MJ
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Re: new to site, couple ?'s
« Reply #49 on: Dec 28th, 2005, 9:29pm » |
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Dog I'm glad you dont ride in my car man.
You are a headache.
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MJ
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