Author |
Topic: What If? (Read 417 times) |
|
kim
New Board Newbie
I love YaBB 1G - SP1!
Posts: 7
|
What if we are not some elusive and rare species? Hmmm? what if, my friends, we have simply missed the target? How many are we REALLY?
these thoughts occurred to me only vaguely (a dismembered and disjointed THOUGHT) for over 2 decades.
For 25 years I was a desert thirsting for another starving soul living in my hell. Last February I discovered (thanks dj and you know who you are) that I was not at ALL alone. Common sense dictates that many more cluster headache patients await discovery. WHY IS IT SUCH A SECRET? This make me mad. We want to put out a legitimate argument, YES?
Why then do people move away (after looking so hard and long)????
It is NOT poetic justice, but ignorance runamuk to be slluffed off simply for explaining yourself in a moment's relief. Why do individuals on this board feel they are afforded the RIGHT to DIAGNOSE Clusters? you who do, please let me know your physician's credentials. otherwise, don't boo hoo me on the LOSS of potential members.
Ok, show me why i should not use a tin hat for a FRISBEE!
|
|
 IP Logged |
|
|
|
Drk^Angel
Guest
|
It's not quite as bad as it used to be. Good luck in the fight though... Last time I posed the question on why ppl were so quick to tell ppl they don't have clusters, I was accused of not having 'em. C'est la vie.
PFDAN..................................... Drk^Angel
|
|
IP Logged |
|
|
|
kim
New Board Newbie
I love YaBB 1G - SP1!
Posts: 7
|
 |
Re: What If?
« Reply #2 on: Aug 18th, 2002, 12:33am » |
 Quote  Modify
|
I'm still waiting for the HUGE AUDIENCE i received back in Feb. Funny, can't hear a TING ( I mean THIHGEEEEE!) 
|
|
IP Logged |
|
|
|
sailpappy
New Board Old Timer
  
Gender: 
Posts: 349
|
|
Re: What If?
« Reply #3 on: Aug 18th, 2002, 12:40am » |
Quote Modify
|
;D ;D Kim,
A very good question, deserving possibly a better answer than I will be able to give ,but I am going to give it a shot anyhow.
First and formost I don't feel I have a right to Diagnose Cluster Headaches,but rather a duty to point out the sutble differences in many conditions that mimic Cluster Headache.
You see My Friend the clues to a begining of understanding and dealing with clusters is first recognizing if your symptoms are even those that are close to clusters!
CPH and TMJ are conditions that mimic the physiological mechanism that causes clusters, however within these same mechanisms lie the difference, the length of time the attacks last, the area of the pain itself and the explanation of what the sufferers do to try and relieve the pain.
There are very minute nuancesses that show the conditions are not cluster, and while the treatments might be close, if one continues to treat Cluster syndrome and has TJM then they are suffering needlessly, as both of the afore conditions are very treatable and cureable. Where as Cluster Heasaches still elude that definitive treatment that works for everyone, or I guess I should say the Majority, as like myself, there almost always seems to be cases that just dont respond to any treatment by conventional methods and the treatments that do help classicly do no help the majority of cluster sufferers.
So as far as myself, if I hear a story that rings the bell in my head that says""This just might not be clusters at all but rather another condition"" I feel I owe that person the knowledge I have aquired in 33 years of seeking some relief for my own condition.
I do not make Diagnosis but rather point out that a condition might sound more like a different cause than cluster syndrome. I always state that I am not qualified to diagnose and they should seek a professional opinion for their condition!
Also I think there are others here that know a great deal more than I and people such as Ueli and BobP have a much better memory than I do!
Well I hope this answered you question from my perspective! Sleep Well and be Pain Free! Pappy
|
| « Last Edit: Aug 18th, 2002, 12:44am by sailpappy » |
IP Logged |
|
|
|
BobG
New Board Hall of Famer
Gender:
Posts: 5747
|
|
Re: What If?
« Reply #4 on: Aug 18th, 2002, 12:41am » |
Quote Modify
|
Uhhmmm kim,
It's the middle of the night in most places.
There are only 6 people signed in here and I'd bet 3 are asleep right now.
Can the huge audience wait til sunrise?
And, I don't understand what you're asking.
And, where I live, we don't have Frisbees but we do have flyer rabbits.
|
|
IP Logged |
Stay stressed. Never relax. Never sleep. Ever.
|
|
|
kim
New Board Newbie
I love YaBB 1G - SP1!
Posts: 7
|
|
Re: What If?
« Reply #5 on: Aug 18th, 2002, 12:51am » |
Quote Modify
|
Sail: 25 years and upwards. You know i think what I'm talkin about. Even at this late hour. Points taken.
Sail, I keep goin back (probably wastin my time), but I cannot get out of my mind a post (from me) at a desperate moment which was "worded" not to the specs of some folks here. I'm sure they know who they are cuz they NEVER speak to me. EVER. Not to say "Maybe we misunderstood" NUTTIN!
Having had this disease for so long, well, I can only tell you that the words said to me felt like a HUGE KICK IN STOMACH. perhaps it's my fault that I never called "STICK" on it. I thought I was doing the "bigger" thing. Find that it still BUGS me. OK. I'm a poop.
BobG: WAKE UP. If not, well the SFU! ;D I'm wide awake and said what I want. You want to snore, i don't mind. whatever frisbee floats ya then go for it.
|
|
IP Logged |
|
|
|
BobG
New Board Hall of Famer
Gender:
Posts: 5747
|
|
Re: What If?
« Reply #6 on: Aug 18th, 2002, 1:08am » |
Quote Modify
|
After reading Sailpappy's response I understand what you are asking.
I first found this board back in the last century, just a couple of months after it started.
There were a couple of know-it-alls that had ALL the answers.
They told me that because I used cold packs on my face/eye/temple that I could not possibly have clusters. They said Everybody-that-was-anybody used hot packs.
Those people are gone now.
I'm still here.
I am guilty of telling some people that they may not have clusters but have always tried, when possible, to guide them to some site where they might find relief. My reason to do that was well stated by Sailpappy above.
And I am also wide awake, waiting for midnight so I can get off work and go to Vegas.
|
|
IP Logged |
Stay stressed. Never relax. Never sleep. Ever.
|
|
|
sailpappy
New Board Old Timer
Gender:
Posts: 349
|
|
Re: What If?
« Reply #7 on: Aug 18th, 2002, 1:22am » |
Quote Modify
|
;D ;D Kim,
I don't doubt your knowledge, I'm 33 years into this and just this past year is the first time I have ever ben pain free in that entire time, 7 attacks a day as an average,but the 12 -15 days were plentiful. I had a few with as little as 3 attacks and these were my closest to nirvana I could Imagine, there ae some here tht know, there are some here that think they know and then there are those that only wish they had a clue!
Since I have been so ill with my Hep C I don't follow the board like I use to but I always try to be helpful , if I can't be helpful I try to make you all smile!
Being a severe chronic and on Oxy Contin is a hard place to be in as far as I feel so guilty for taking the med. but I also feel like a fool for letting the CH's ruin my childrens life and for putting my wife through such hell, all because I didn't ant to labled a drug addict.
Well Lady let me tell ya! I'll take the stigma anyday now over the pain, I am tapered as far down as I dare go adn having attacks again at this dosage, I'm supposed to be taking 40mg X2 a day but have it down to 20 X2 a day but also having constant shadows and 2 to 3 attacks a day, I'm going back to 40mg a day and if I don't fit the ""Cluster Clique Crowds" Guidelines well all I can say is that in this case they are wrong and the Oxy Contin has stopped a 33 year malady dead in its tracks, I have tried every known medical treatment and this is the first to give me real relief, I just have to fight the addiction demons very hard. Love Ya Pappy
|
|
IP Logged |
|
|
|
Drk^Angel
Guest
|
Hey Pappy... You do like we all should... You try to guide ppl... If you feel they might not have clusters, you explain that their symptoms may resemble something else. I don't have any problems with that, and I do it myself. I think what Kim is more concerned with (And if I'm wrong Kim, I'm very sorry) is the ppl on the board that will flat out tell someone that they do not have clusters, and they should go somewhere else.
The way I see it, we're not going to be able to stop the purists from automatically deciding that someone doesn't have clusters... We're also not going to be able to stop them from stating their view on the board. The best thing we can do is welcome the newbies, try to help them if we can, and show them that there are some that are still willing to accept them.
PFDAN.............................. Drk^Angel
|
|
IP Logged |
|
|
|
Drk^Angel
Guest
|
Den... Don't know about the rest of your questions (the woman in the bikini must've distracted me or something) but on your first question... Someone may leave if they didn't feel welcome. Just a thought.
PFDAN.......................... Drk^Angel
|
|
IP Logged |
|
|
|
Bob P
New Board Hall of Famer
Shut up Bob!
Gender:
Posts: 3436
|
|
Re: What If?
« Reply #10 on: Aug 18th, 2002, 7:28am » |
Quote Modify
|
Den - I think I love you (David Cassidy, circ. 1972).
BobG - guilty is such a negative word. It's your duty to tell people that their symptoms are more indiciative of another condition than they are clusters.
Make sure you are treating the correct disease, otherwise this site will do you no good.
|
|
IP Logged |
Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
|
|
|
sailpappy
New Board Old Timer
Gender:
Posts: 349
|
|
Re: What If?
« Reply #11 on: Aug 18th, 2002, 9:21am » |
Quote Modify
|
Kim---I think I understood what you meant, maybe I should have cut to the chase and said it like this-Who cares what others think, you know who and what you are and how you feel so stick with your instincts, a wise man never stops learning! A foolish man thinks he knows all! a weak man lets a fool tell him what to do!
Dark, Your right on the money, I took it from a softer prespective(Mine) and I have had the same people try to tell me what I do or don't know and I've been walking the walk in a more serious venue than most that have ever found this Oasis in the Desert, You can say Severe Chronic but until your experienced the Day after day year after year,decade after decade of living in this hell with nothing helping beyond toughing through with cold water and ice, Oxy Contin has stopped my demon, he is right behind the chemical complex structure ready to jump out and trying, plus he had two more demons helping him, Guilt and Addiction so I thank you for your wise observation my Friend, Be not detured by the meladrama but stay the course until victory!
BobP, Great minds think alike, just wish I had one! Love ya Bro!
BobG, I hope I covered your input in here some where, Your right in here somewhere too, Wise man(woman), Smart enough to play through! Thanks Bro! Pappy
|
| « Last Edit: Aug 18th, 2002, 9:22am by sailpappy » |
IP Logged |
|
|
|
kim
New Board Newbie
I love YaBB 1G - SP1!
Posts: 7
|
|
Re: What If?
« Reply #12 on: Aug 18th, 2002, 10:23am » |
Quote Modify
|
I didn't want to leave this boo hoo thread (yes, I was whining - sorry) off on my somewhat sour dour blubberings last night.
Sail, you always help. Thanks!
BobG, I hope you got the gist and are not offended. Have fun in Vegas.
Den, Yep, I'm an idiot. And den, when I first came here I WAS FRAGILE. In every way. But, I came back to the trough cuz that's where I belong no matter what.
You are right. However, we all have our moments.
BobP: Of course its the right thing to do to use your knowledge to point someone in the right direction - I agree absolutely. That isn't what I meant at ALL.
Ok, guess i unloaded.  I'm done now.  Shuttin up......... ;D
|
|
IP Logged |
|
|
|
Donna
New Board Newbie
Gender: 
Posts: 2
|
|
Re: What If?
« Reply #13 on: Aug 18th, 2002, 10:32am » |
Quote Modify
|
Let's do an "Atta girl" for Kim.
You have it all together, girl!
|
|
IP Logged |
|
|
|
domm
New Board Old Timer
I love YaBB 1G - SP1!
Gender:
Posts: 474
|
|
Re: What If?
« Reply #14 on: Aug 18th, 2002, 10:49am » |
Quote Modify
|
Read this post earlier and went away for awhile, but couldn't get it out of my head. I discovered this board three years ago during my second cycle, and found myself so relieved that I was not alone. I found such vast emotional and psychological support from people who didn't know me, that all by itself, it made this beast easier to deal with.
I am not the sharpest knife in the drawer and I know that my experience isn't the same as others. But I do know that I can draw upon the expereinces of others in my attempt to understand.
I've only had K10s on several occasions during my three cycles (thank god) and have entertained the "s" word only once. I don't ever want to find the dark place again. If reading through these messages and finding people like me, helps keep me from that place, then I'm willing to tolerate some jerk comments from people who somehow think they are better than others.
Maybe, somehow, by posting a thought here or there, I can give back some of what I have taken.
domm
|
|
IP Logged |
|
|
|
catlind
CH.com Alumnus
New Board Hall of Famer
Taz taught me the cluster dance
Gender:
Posts: 3433
|
|
Re: excuse me
« Reply #15 on: Aug 18th, 2002, 11:20am » |
Quote Modify
|
on Aug 18th, 2002, 1:59am, den wrote:-why do I have so much trouble organizing my thoughts with someone sitting behind me yammering away about nothing to a cat?
Love
den |
|
I SWEAR I was no where near Den last night 
Kim, I understand what you are saying (I think). I've had people make comments in innocence or in an attempt to help, and depending on my state of my mind, taken them in the worst possible light. When I found this site I thought for sure I'd found heaven. I took the info from this site and all my medical history and took it to my doctor and we together discussed all the possibilities. If someone here told me I had a tumo(u)r I'd have to check it out with my doc before it was taken as gospel. I've had someone ask me outright, "are you sure you have clusters and not migraines?". Had I been in an attack and my defenses down, I might have taken that as being told you don't belong here. I realize that there are also ADDITIONAL health issues that can go with clusters. After reviewing all the info (and I had alot of it from here and from NORD and NINDs and IHS) we came to the conclusion that yes I do infact suffer from Cluster headaches, without question, but on top of that I also suffer migraines. Throw into the fray a brain hernia, and it's easy to see how if I relay symptoms such as a 20hour long headache, that folks would wonder if clusters were my problem. Ok I'm rambling along here, maybe I should get to the point....hmmm what was the point....
Oh yeah I remember now LOL. It can be hurtful when we read something from a stranger or a known person on here that insinuates we might not be clusterheads. AFter searching and suffering and finally finding a home, when you are fragile, it can feel like a parent telling you, you aren't welcome. What I try to do is remember that in cycle and during an attack I am vulnerable to misunderstanding guidance and suggestions. So I wait and come back to it later and I can usually see that it was said in a loving way and not an accusatory way.
My husband is famous for saying "put up or shut up". If I get in a really down state he'll tell me "change it, only you can" that can be hurtful, but I know he does it out of love and I also know it's the truth. What we take away from any experience should be what we choose. i.e. we can choose to take only the negative, or we can choose to find the positive. That doesn't make it hurt less when one is fragile, but always try to remember the huge amount of love and support here. There are some I've noticed who simply like to be negative. But mostly everyone here is supportive and just tries to help by guiding or suggesting.
Okay, now that I've rambled on and on, Ill shut up now Slammy
luv ya all
Cat
|
|
IP Logged |
A true friend is someone who reaches for your hand and touches your heart
If yer gonna be stupid, ya gotta be tough
|
|
|
Not4Hire
CH.com Alumnus
New Board Hall of Famer
...WAS PF since Oct.'02, but ...oh my...(CBusters)
Gender:
Posts: 1190
|
|
Re: What If?
« Reply #16 on: Aug 18th, 2002, 1:25pm » |
Quote Modify
|
(in the same tone as Den's first post in this thread...hopefully)
...he notices the same door still ajar....and enters to find that the previous occupant left wisdom...... freely given and gratefully accepted.......
-what makes someone so emotionally fragile that they would allow some black sqiggles on a screen to so engulf them in anger that it blinds them to the other black sqiggles which contain a way to manage their Clusters?
....he painfully remembers being flamed for a (perhaps) *unfortunate* choice of words.......
Thread: "Sick and Tired" « Reply #25
-why do some people find it necessary to want to control what, when and how others say things?
....he searches his soul, and his previous posts to find the error in his path, the stone he tripped upon......
-why....if I'm not really very important ...why am I all I ever think about...
....aye, Hamlet........there's the rub.......
......he senses the same lack of listeners as the previous occupant, and, thanking the carpenter who built the room, leaves the door ajar for the next traveller.........
|
|
IP Logged |
Mantra: This will NOT kill me...This will not KILL me... This will not kill ME...
|
|
|
Edna
New Board Hall of Famer
Gender:
Posts: 1596
|
|
Re: What If?
« Reply #17 on: Aug 18th, 2002, 2:04pm » |
Quote Modify
|
First of all
Pappy.....A better answer than yours?? I would never think that.
Den......wiser answer than I could of given
drk......hopefully no one questions your sincerety after these intelligent remarks
Bob G......"I" am still here too like you, and probably for the same reasons.
Donna.....I'll add my "atta girl" too
Domm.......giving back some of what has been taken....works for me too!
Cat.....what can I say.....we all know it WAS you there with den....( )
Not4.....purty smart......since all here ARE actually peeking through that door that has been left ajar
AND TO KIM.....hope you know you are not alone;....why do ppl move away......you and I probably can't answer that one....but CAN be here waiting for the ones that choose to stay...
hoping the replys here helped and if they didn't...I trust you will let us know....at least that's what I'm here for.
Hoping my 2 cents helped......and if not....  ......I'll still be back 
Love and best wishes to all,
EDNA
|
|
IP Logged |
|
|
|
sailpappy
New Board Old Timer
Gender:
Posts: 349
|
|
Re: What If?
« Reply #18 on: Aug 18th, 2002, 3:44pm » |
Quote Modify
|
;D ;D Edna,
In all the days of my misconfussion, I cannot for the life of me remember a time such as this, I have been here but a millisecond and yet when I realize that of all the regular posters, in the eternity that I have been blessed by this haven, I fail to remember if perhapse I have forgotten to reply to one of such idealogic vision as you! Has it slipped my mind to say hello to you fair maiden? If so, let me correct this misnomer now and here and say that I have read with astonishment the warmth and caring and wisdom prevailed by you in your post. So in this unsteady state of mind that I have fallen into by the hand of so many demons, to you fair lady, I bid Hello! I respect and relish each response I have had the pleasure to read and thank you so much for the compliment!
I don't really understand how it is that I can insight such reactionary reply to my posts sometimes, I mean no one here anything but the best, especially with regards to the Battle at hand with Sir ClusterDemon, such a cunning,viscious foe has nere been unleashed upon so many innocent souls. Like many here, I thought it only I that was plagued with this malady, until Master D.J,s Beautiful Oasis was placed into my path, it's so many and yet not enough for the Pharmicudical companies to study and come up with a devise for our quest. Ah but maybe one day, maybe one day soon!
So Fair Ms. Edna; Hello and Farewell: as duty calls and the baking chamber longs for the insertion of my not so infamous Lasanga! Thank you for joining the Family and Please forgive me in my long overdue accknowledgement of you Fair Lady! LOL! Pappy
|
| « Last Edit: Aug 18th, 2002, 3:53pm by sailpappy » |
IP Logged |
|
|
|
Melissa
Guest
|
hehe...pappy said "insertion"... ;D
sorry, i've had too much Mt Dew today 
|
|
IP Logged |
|
|
|
sailpappy
New Board Old Timer
Gender:
Posts: 349
|
|
Re: What If?
« Reply #20 on: Aug 19th, 2002, 6:49am » |
Quote Modify
|
;D ;D Ms. Melissa,
I can just picture you sitting there with that cute smirk on your face posting this ""remark"" Got a big grin outta me my Sweet Friend!
Did I ever tell you I think Dimples (Maybe it's just yours) are just about the cutest thing, It goes to show that you smile a lot of the time, You Beam with an inner happiness that is unique on the board and I Think of you often, Of Course being in the State where the Kids Mother is helps remind me of where you are too, did you know you have a great court website up there, it's helped me keep up with the Cox clan, Misty the kids mom never writes or calls and the Grandmother and their uncle Travis all live in the same house, he is in jail down here now but Oh what a basket case,
Ever want to look at your court history it at http://ccap.courts.state.wi.us/servlet/us.wi.state.courts.internet.acces s.GetJSP It's amazing what you can find if you just look for it! Love Ya! Pappy
|
|
IP Logged |
|
|
|
dannyboy
New Board Old Timer
Docs didn't design the machine they're working on
Gender:
Posts: 329
|
|
Re: What If?
« Reply #21 on: Aug 19th, 2002, 7:37am » |
Quote Modify
|
I loved your post Kim
I remember some of the reasons I've heard some Big People people make the "Ain't a Cluster ... Hasta!" diagnosis around here
- Relief from ligation of extra-cranial arteries
- Relief from dental intervention of one sort or another
- Relief from intra-oral othosis of one sort or another
- Relief from Any extra-cranial intervention
... ... Sailin' on yer ego trip ... dum da dum ... you know how it goes.
The best thing about know-it alls though, is that if you're prepared to Wait you always get a great finish - you know, the one where they're gulping down that humble pie so fast that its bubbling out of their noses ... the worst thing about know-it alls though is that in the meantime they can unintentionally cause real human damage
IMHO, its Our responsibility to step in and politely point out that so and so may like to have a spoonful of pie in time ... to save nine ... but most of the time we're silent... well spoken Kim, change is a slow process that requires your sort of courage. If you'll stand for BoD I'll vote for ya. Will you stand?
Nations will commit genocide for the black squiggle Den ... how easily then does a solitary clusterhead slip off into the night ... thing is, we often allow others to suffer for our own lack of courage, by staying silent ... Kim for president.
I know everything
Danny
|
| « Last Edit: Aug 19th, 2002, 7:52am by dannyboy » |
IP Logged |
Bedside manner is no substitute for a correct diagnosis - Bill Gates
|
|
|
Charlie
CH.com Alumnus
New Board Hall of Famer
Happy to be here
  
Gender:
Posts: 14968
|
|
Re: What If?
« Reply #22 on: Aug 19th, 2002, 8:11am » |
Quote Modify
|
I know Den and Pappy do this better. A lot better in this case. Kim never writes anything boring. I do but that's because I'm full of myself. Anyway..........
Why is CH such a secret? We all enjoy yakking here. Most don't, can't, won't, or stay. I suppose there are those that don't like what they read here but like you Kim, we are complicated but rarely boring. And in the long run successful.
A lot of us, myself included, have little things we think are near sure signs of CH. Most of the time I see them sent to a physician....most of the time. I do believe we are intolerant toward those who aren’t sure. My position isn't popular but I believe those with migraines won't stay for more than a few posts in any event. There is almost nothing for them here. They go away on their own.
We do waste time, sometimes seem intolerant, are profane, and pretty silly. Still, I've never been to a board that is as interesting, nor full of so many people willing to help. It’s the nature of the disease. Among all the bickering, are some damn good ideas and help for those with this horror.
Kim’s turn because I know I’ve been a little shallow here.
Charlie
|
|
IP Logged |
There is nothing more satisfying than being shot at without result---Winston Churchill
|
|
|
kim
New Board Newbie
I love YaBB 1G - SP1!
Posts: 7
|
|
Re: What If?
« Reply #23 on: Aug 19th, 2002, 8:23am » |
Quote Modify
|
Ok. Ever notice that even as 99.9 percent of us are basically in agreement we spit hairballs? ;D.....i mean split hairs? ;D
It took me years to become a good tennis player. I'm sure the same applies here. Not perfect and proud of it. did i just fart again? Oops. Sorry.
|
|
IP Logged |
|
|
|
Ree
New Board Hall of Famer
2008's my year to shine~SUN IS OUT!!!YAY
 
Gender:
Posts: 5236
|
|
Re: What If?
« Reply #24 on: Aug 19th, 2002, 8:38am » |
Quote Modify
|
In a supporters way I will tell you... that I haven't in the past year seen anyone tell anyone they dont have CH without saying "YOU MAYNOT" YOU MIGHTNOT" have CH... I can remember a time when misdiagnosed people would come here to say they thought they had CH... describe their unfortunate pain and get thrown out being called a WIMP or girl thingy... I think we have all come past that... I have never seen anyone DIAGNOSE clusters, but know several people my husband included that I believe know more and have the right to DIAGNOSE CH... I must have missed SOMETHING over the weekend...
just ree trying to go back to the topic of this thread...
|
|
IP Logged |
Proud Mom to US ARMY Kiowa OH58 PILOT~CWO2 SCOTT Hawaii, & USMC Vet~Now POLICE OFFICER SEAN, Citizen of the Month~ Breezy~ Nana 4 Matt/Mike&Aya, MIL To Shino Wife to Dave HI BILL!http://www.myspace.com/dungareespocket http://www.prohawaiian.com
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
Remove
test rss