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Topic: New - OH.. this is a long one!!!! (Read 546 times) |
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Woobie
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New - OH.. this is a long one!!!!
« on: Nov 4th, 2002, 11:14pm » |
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Hi. My name is Tina, and my husband is Ramon. We've been together for 16 years... (he's 34 and I'm 30) We have two daughters - ages 12 and 8. We live in Illinois. (previously from Iowa)
Ramon has CH.. and I try to help. I stay out of his way... and by reading some of the boards, I see that this is the correct thing to do (yea for me!!). He has been having the headaches for over three years, but JUST got diagnosed. Some brilliant Dr finally TALKED to him and figured it out.
I cannot believe it... and I just wanted to express this to someone... When he was told he had clusters.. we had NO clue what they were.. we just knew they hurt Ramon REALLY REALLY bad. So I went searching and found a lot of stuff about it.. read about it, and am now UPSET!!!!
Every website that lists the symptoms all say the same EXACT things that Ramon had been telling the Drs for YEARS!!!!! WHY did it take so long for someone to give him some oxygen.. or imitrex?? WHY did it take so long for someone to sit down and TALK to him and piece it all together.. it only took half an hour once this BRILLIANT Dr sat down and started drilling him.. "where does it hurt".."when do you get them" "how long do they last" ...three simple questions.. and he had it all figured out.
The previous dr's were just shooting him up with demerol and sending him home. Did a CT Scan, showed nothing, blood tests showed nothing, MRI showed nothing.. so .. he GOT NOTHING.
So, when he got no where with those doctors, he went elsewhere, and then those other doctors labeled him a "doctor hopper" and a "DRUG SEEKER".. and then he couldnt' get ANY relief from anyone.. anywhere. ..ever.
We then moved out of the state - THANKFULLY, because I found a better job.. and then - and ONLY then, we found a Dr that listened and believed him. He went in with a doozie one day and the dr said .. "let's try some oxygen". I said "WHAT??? Demerol didn't help.. what's oxygen going to do??" But WOW.. what a difference 20 minutes of oxygen can do!
No one EVER gave him imitrex, no one ever suggested oxygen. No one ever thought to ask about the frequency and TIMES of the headaches. No one ever mentioned possibly going to a neurologist. No one ever listened. No one cared. No one believed him. Just labeled him a hopper and a seeker. UGH!
My point is this.... I read some of the posts on the boards.. and there's an overwhelming number of them talking about how the general public and a lot of Dr's dont understand. Someone wants to do a documentary on it.. someone wants to call Oprah. These are great ideas...GO FOR IT!!! It SHOULD be done..
And you know what?? I think we should get on the American Medical Association's ASS.. because the regular family Dr and the ER doctors (usually the first line of defense) don't know how to differenciate between headaches. They dont know how to sit and talk to their patients. They dont know how to have a little compassion. 10 minute appointments.. that's it.. no more. Time is up.. you are oughta here!!! Time is money.. don't know..cant help ya.. get out. DRUG SEEKER!!!! Makes me so mad.
I know this isn't all doctors. But DAMN!!! It's insane!! Ramon suffered for YEARS - thinking he was crazy.. getting no relief, no validation anywhere.
I know all of you out there KNOW how it can make you crazy even when you KNOW what's going on. Imagine not knowing.. everyone telling you there's nothing wrong.
I wanna know how long it took all of you guys to get diagnosed correctly!! How many doctors did you go through? Is this an isolated incident? I would REALLY hope so.. but I somehow think it's not. This would interest me greatly! If our experience IS an isolated incident, that's a good thing, and I won't be so angry. but if a lot of people are suffering like Ramon did, it just makes me sick.
Thanks for reading
Woobie
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Mastifflvr28
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Re: New - OH.. this is a long one!!!!
« Reply #1 on: Nov 4th, 2002, 11:46pm » |
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Welcome to the board Tina and Ramon, so glad you finally got some help. Good job finding us and reading!!
I was diagnosed when I was 18 by my family doc, he shrugged and said "You got cluster headaches". Gave me a script of Fioricet and verapamil and sent me on my way. That was 14 years ago (I'm episodic) and the fioricet did nothing, and the verap dose was too low.
4years ago I found this place...what a godsend. I hope to never see a 10 again!! I go to see that same doc and as soon as I walk through the door he gets his script pad out and starts writing what I tell him. O2, imitrex, and verap...he has no probs with this.
I do consider myself one of the lucky ones.
Good luck, glad ya found us,
Mast
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Mastifflvr28 (aka Michelle A.)
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OXYGEN!!!
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Charlie
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Re: New - OH.. this is a long one!!!!
« Reply #2 on: Nov 4th, 2002, 11:59pm » |
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Welcome and we know how you feel. Here is a link to something to print out that may help you get others to understand. Simon's letter can be a life-saver:
http://www.ouch-uk.org/ch/note_colleagues.cfm
Keep in touch.
Charlie
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Bonnie
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Re: New - OH.. this is a long one!!!!
« Reply #3 on: Nov 5th, 2002, 12:05am » |
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Tina, at the convention this past September, our speaker - who is a Headache Specialist at the largest hospital in the province - told us that doctors, in 4 years of medical school, spend just a few short hours studying all types of headaches. That is why they don't know when they see someone with cluster headaches. So....WE need to educate the doctors. Glad that your husband was finally diagnosed correctly, and was able to get help. Many people here end up diagnosing themselves, and then finding a doctor that will believe them and prescribe what they need. My husband suffered for quite a few years, before I found an article on cluster headaches, cut it out, and sent him back to the doctor with it. We still have to travel 500 miles to see a qualified neurologist who knows how to treat him, but it is well worth it. Welcome to the site!
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Lapsi_Harmaahapsi
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Re: New - OH.. this is a long one!!!!
« Reply #4 on: Nov 5th, 2002, 12:08am » |
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Welcome. Good thing you found us.
7 years, 3 docs.
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marty
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Re: New - OH.. this is a long one!!!!
« Reply #5 on: Nov 5th, 2002, 1:54am » |
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Bad thing that CH. It brought you here and we are glad that you found us but sorry all the same..
I checked the "where we live" section and found that there are 88 registered from Illinois. Maybe even some close to were you live.
I have had CH since 1997. I was not diagnosed until June of 2002. From 1997 until I was diagnosed I was told by numerous DR's that I had "chronic sinus problems" - even though X-Ray showed clear sinuses. I was told that I had dried out membranes in my noose...
There is a problem with DR's not being able to diagnose CH and that is something that we all must work hard to change.
By the way Tina, very nice post.
Marty
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OneEyeBlind
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Re: New - OH.. this is a long one!!!!
« Reply #6 on: Nov 5th, 2002, 4:54am » |
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I was actually very lucky. First cycle, two visits to my family doc ... and wala ... sent me for a CAT scan which showed clear sinuses .... one of her guesses was clusters and she sent me to a neurologist who confirmed her diagnosis. I love my doc !!!!!! She always takes the time to listen to her patients !!!!
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Virginia
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Re: New - OH.. this is a long one!!!!
« Reply #7 on: Nov 5th, 2002, 10:34am » |
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Hi Tina- and welcome to the board. It took me 7 years to get diagnosed correctly. And that was only after I walked into the Dr's office with a magazine article in my hand and said "I think these are type of headaches I have" and first the neurologist said "no, I don't think you have those". Two hours after my appointment she called me at my office and said "I think you're right. You do have cluster headaches" UGH! I diagnosed myself! A lot of us do unfortunately. 
Hope you find a lot of useful info on this board. Most of the members here know more than the dr's about these headaches!
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Margi
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Re: New - OH.. this is a long one!!!!
« Reply #8 on: Nov 5th, 2002, 10:47am » |
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Hi Tina and Ramon - welcome to Clusteropolis.
Yep, count us in too. My husband, Mike, started with clusters right around the age of 20. He's 45 now and we didn't know what these attacks were, actually, until we found this website, 4 years ago last week!! He has since been 'officially' diagnosed by a cluster knowledgeable neuro (which is a rare breed, sadly), but Mike went...what....21 YEARS without an official diagnosis. When I stumbled across this website back in October of 1998, it was like a light finally went on. Nothing we had ever read before detailed EXACTLY what Mike was going through like clusterheadaches.com does. It truly was an oasis for both of us and educated us enough to know what to look for, for treatment.
Mike had been diagnosed with allergies, sinus infections, spinal misalignment, you name it. But never clusters.
I remember going with him one time to our family doctor, and asking her why his pupils were different sized....(classic Horner's Syndrome, VERY typical of a clusterhead)....that doctor looked at him like he was an alien and muttered that she'd never seen anything like that before. THAT makes you feel real special! 
So no, sadly - you're not the exception to the rule here. But at least you've found us. And, Tina - there is a section just for us - the supporters - feel free to share your war stories there, as well. You sound like you're already way ahead in the game of coping that we all play, but it's so nice to know there are others out here just like you.
Again, welcome.
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F1World
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Re: New - OH.. this is a long one!!!!
« Reply #9 on: Nov 5th, 2002, 10:55am » |
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Spot on post Margi.. though I had to read it twice, as I was unsure of "Homer's Syndrome"... upon closer inspection though "HoRNer's Syndrome" did seem a bit more appropriate...... ya I wear glasses.....
F1World
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Mark C
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Re: New - OH.. this is a long one!!!!
« Reply #10 on: Nov 5th, 2002, 10:59am » |
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Welcome Tina & Ramon,
Sorry to hear Ramon is getting his head hammered by the beast. I know how that feels!
Your story is classic. You would think one of the "most painful conditions known to man" would get more respect. I was 14 when the HA started and it wasn't untill I was 26 or 27 that someone finally got the diagnosis right. I guess I have seen at least 12 diffrent doctors in that time looking for help. I will never forget when my first Neuro showed my a paragraph in a book that described my pain to a tee. 1 paragraph after all of those years of pain.
This site and the OUCH site are the clearing house for Clusterhead info so you guys educate yourselves so you can be better armed for your next Dr visit.
Good luck,
Mark
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captdshea
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Re: New - OH.. this is a long one!!!!
« Reply #11 on: Nov 5th, 2002, 11:21am » |
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Tina- Hi and welcome to the MB, Your husbands story
is A very common one, Judgeing from all I've read here
and my own experiances.
I once went into the ER holding an Ice Bag over my right
Eye moaning and begging for help with the pain.
What seemed like Hours of waiting, witch was propably
less than a half. I saw A young Dr. in training, He had me pull his fingers. and spoke to me of stress a little
All the time I'm telling him my proplem was not sinus,
But, CH. Later He wrote me A scrip for medicine
formely used for migrane they did not make anymore.
This is A great site and many suffers will be helped
here. But the info is not going to get to the Dr. from
here. I was happy to educate too of the locale Doctors
here yesterday at the locale Club.
Glad you found this site.
David
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Margi
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Re: New - OH.. this is a long one!!!!
« Reply #12 on: Nov 5th, 2002, 11:34am » |
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LOL David...
I think a lot of us would like to tell some doctors to pull our fingers. 
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Azrael
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Re: New - OH.. this is a long one!!!!
« Reply #13 on: Nov 5th, 2002, 12:33pm » |
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Welcome to the board! Sorry that the beast is playin' baseball, using a red-hot steel bat, and you husband's cranium for the ball. Good luck!
PFDAN........................... Drk^Angel
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oringkid
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Re: New - OH.. this is a long one!!!!
« Reply #14 on: Nov 5th, 2002, 12:37pm » |
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I know how you guys feel. I started getting this stuff at around age 12, I am now 41. I don't think I was ever really mis-diagnosed, they just didn't know what it was. I wasn't actually diagnosed correctly until I was in my late 20's or early 30's. I had tests...mri etc. negative. I was given migraine meds...because it seemed similar to that doc and he figured it might help...it didn't. My problems ran to the docs just not knowing what it was, not thinking it was something else. But that was way back when even fewer docs had a clue about clusters. But when I did see this new doctor (he was very young) I just told him the symptoms (I knew nothing of CH then) he looked at my eyes, asked a few questions, and said "I think what you have is Cluster headaches, it is very rare for females to get them but I think that is what you have. Unfortunately we don't know what causes them and there is no cure." He then sent me for an MRI to rule out other things and we began trying different drugs. Unfortunately, I have had very little success with the drugs. I am hoping to try O2 on my next cycle.
So you see, your story, unfortunately, is not an isolated incident.
Welcome to the board!
Sherry
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sueellen83
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Re: New - OH.. this is a long one!!!!
« Reply #15 on: Nov 5th, 2002, 1:55pm » |
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Welcome Tina and Ramon,
Glad to hear you finally got a correct diagnosis. not glad to hear you are having to live with the beast.
I spent 15 years looking for a name for the beast. Was miss diagnosed when I was 16, with Trigiminal Neuralgia. I think because of my age and being female they just weren't looking for CH. When I was 22 I happened to be in the Neuro.'s office when the beast hit. ( same Dr. who misdiagnosed me). He took 1 look at me and said " Clusters".
When I was 33 I got tired of getting Prednisone (which didn't help and had bad side affects for me.) and the Dr. not being willing to try new things, even O2,. Started looking for a new Neuro. Went to several, had 1 who treated headaches exclusively tell me she had never heard of Cluster Headaches.
Finally found the right Dr. at the end of that cycle and he has been a God Send. Willing to try new things and really listens when I talk to him.
Sorry, I started rambling, any way hang in there and good luck. There is really good info. here and at OUCH site. Remember you are not alone.
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Woobie
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Re: New - OH.. this is a long one!!!!
« Reply #16 on: Nov 5th, 2002, 4:06pm » |
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Hello again.
I have yet to be able to show this site to Ramon, he has been dealing with "the beast" for a couple of days now, and hasn't come near the computer. (or any of us, for that matter.. ) But I have been on this site for 2 days straight now, (NOT KIDDING). There is SOOO much here... and I keep reading all these posts. I just have to say that you guys great!!! It's overwhelming, really.
I am feeling really bad - i didn't know these headaches were so bad... and sometimes would get mad at Ramon.. thinkin "geez.. i know headaches hurt, but is it THAT bad??" I would never say that, because he was in odvious extreme pain.. but when he wouldn't go to work for weeks at a time, I would start to get a little frustrated..and mad even. Now, sitting here reading all of this, I feel like KA KA!!! I had NO idea. Now, I feel like I let him down.. not believing it was that bad, wanting him just to go to work.
How do any of you keep jobs?? I mean, it's amazing the Ramon still has his.. And he isn't chronic. Do those of you who are chronic have jobs?? How could you? When Ramon is getting these... he cant do ANYTHING for weeks at a time.. and you all understand, I'm sure, how hard it is to explain this type of headache to your boss.. they dont understand... it seems like no one does except you all. I am going to print out that letter from Simon and have Ramon take it to work when he goes back.. maybe it will help.. Thank you Charlie for that!!
But, after reading this site for the last 2 days..I know now, and I will be more understanding, believe me. And THIS is where I will come for questions.. it's odvious to me that this site is more KNOWING that most Drs out there.. and isn't that sad? I will be printing out a bunch of thing to take to the Dr. It is just amazing to me that this condition is so damned painful, and doctors dont know more.. I will be changing what they know in my family Dr office.. believe ME.
OH.. one thing that makes sense.. the OXYGEN!!! The water therapy that is mentioned... there's oxygen in water.. so it makes sense that drinking a lot of water would help.. if O2 helps. O2 helped Ramon at the Dr's office, so I told him about it.. hopefully it will help him. We get O2 in two ways.. breathing, and water. So if you cant breathe enough.. water makes sense. Will be trying it.. trust me
A friend of mine has this water bottle.. that actually filters out the bad things and puts more oxygen in the water. This water bottle costed something like $90. But the filter is good for like 2000 fills. (i think it's like a 36 ounce bottle) And they did some study or something that showed it puts 5X more oxygen in the water than normal drinking water. I will ask him for the website and post it when I get that info. I think now that I will spend the money.. if it will help, it will be worth it.
I want to thank you all for just being here.. for this website, for the links, for the info.. for just giving a shit about other people!! It means more than anyone can say, really.. and I sure am glad I did find it.
Tina
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Margi
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Re: New - OH.. this is a long one!!!!
« Reply #17 on: Nov 5th, 2002, 4:12pm » |
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Although that is a pretty cool theory about the water, Tina, that's actually not why it works for some folks. It changes the salts balance in the system and Doc Jerry (the guy who originally brought us the treatment) is sure that, by doing that, it is enough to change the body's chemistry to end the cluster cycle.
Water unfortunately doesn't work for everyone, although it has had some pretty amazing results for some folks, my hubby included (two times I think). It rarely helps folks who are on other meds, and quite often won't make a difference for chronics. It also can be a dangerous thing to do if there are underlying kidney or liver problems.
As to the employment issue, you'll find that there are a few self-employed folks here - for that very reason. And quite a few folks HAVE lost their jobs because of clusters. Yep, it totally sucks. Another big reason OUCH was formed, to act as a voice for individuals struggling with employers and insurance issues.
Again, feel free to post in the Supporter's forum, Tina - you'll find lots of compadres there and I'm sure lots of supporters have felt the anger (because of misunderstanding) you have.
Hang in there, gal.
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And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
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kathy copelin, ch.com 8/8/06
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Azrael
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Re: New - OH.. this is a long one!!!!
« Reply #18 on: Nov 5th, 2002, 4:36pm » |
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All I have to say about the employment issue... FMLA saved me from the ranks of the unemployed.
PFDAN............................. Drk^Angel
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echo
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Re: New - OH.. this is a long one!!!!
« Reply #19 on: Nov 5th, 2002, 4:49pm » |
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Welcome to this group of clusterheads. Sorry you needed to search for us, glad you found us.
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Woobie
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Re: New - OH.. this is a long one!!!!
« Reply #20 on: Nov 5th, 2002, 4:53pm » |
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DANG IT!!  I thought I had the water thing all figured out!! Guess not. This is another reason it's good this place is here. 
What do you mean it changes the salts?? I dont get it? Like potassium and stuff like that?? Where do I go to read this stuff?? I went to the waterx3 thing..
THanks Margi
Tina
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Bob P
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Re: New - OH.. this is a long one!!!!
« Reply #21 on: Nov 5th, 2002, 5:10pm » |
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Here is a study, done on this site, by Dr. Klapper dealing with how long it takes to get a corect diagnosis:
"1: Headache 2000 Oct;40(9):730-5
The misdiagnosis of cluster headache: a nonclinic, population-based, Internet
survey.
Klapper JA, Klapper A, Voss T
Colorado Neurology and Headache Center, Denver 80218, USA.
[Medline record in process]
OBJECTIVE: We conducted the first nonclinic, Internet-based survey of cluster
headache to investigate this population with regard to diagnostic problems
encountered, effective and ineffective medications, problems obtaining
medications through third-party payers, and symptoms as they relate to
International Headache Society criteria. BACKGROUND: Previous cluster headache
surveys have been at specialty centers. These patients might be different from
cluster headache sufferers in the general population. An Internet-based
population of cluster headache sufferers who connected to a Web site responded
to the questionnaire, and e-mailed it back to our site to be analyzed. We
analyzed a total of 789 respondents, 76% men and 28% women. RESULTS:
Eighty-seven percent of respondents qualified as having cluster headache
according to International Headache Society criteria. However, diagnosis was
delayed an average of 6.6 years from the onset of symptoms. The average number
of physicians seen before the correct diagnosis was made was 4.3, and the
average number of incorrect diagnoses was 3.9. Seventy-one percent of
respondents had undergone unnecessary magnetic resonance or computed tomography
scans, and 4% had unnecessary sinus or deviated septum surgery. We found that
many inappropriate medications such as propranolol, amitriptyline, and
antibiotics were prescribed and that successful medications for clusters such as
sumatriptan and oxygen were often denied due to a failure to understand the
nature of this disorder. Seventy-seven percent of respondents were smokers.
Seventy-four percent stopped smoking in an attempt to improve their condition;
however, only 3% experienced relief. CONCLUSIONS: The most alarming finding was
the delay in diagnosing cluster headache in this population--an average of 6.6
years. The selection of medications demonstrated to be successful in the
treatment of clusters proved effective for the majority of this population. Many
respondents reported being denied some of these effective medications by their
physicians or third-party payers. Using International Headache Society criteria
for cluster headache, 87% of the respondents should have been correctly
diagnosed by the first physician seen."
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Woobie
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Re: New - OH.. this is a long one!!!!
« Reply #22 on: Nov 5th, 2002, 6:11pm » |
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WOW Margi... and BOB ;D
That was interesting.. Thanks for the info!!!
Tina
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| « Last Edit: Nov 7th, 2002, 5:32pm by Woobie » |
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2late
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Re: New - OH.. this is a long one!!!!
« Reply #23 on: Nov 5th, 2002, 6:26pm » |
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welcome to the board folks, sorry you had to search for us. ..........2late
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Re: New - OH.. this is a long one!!!!
« Reply #24 on: Nov 5th, 2002, 7:58pm » |
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Hi! I was "luckier" than many...I didn't get these until I was 47. Took me 3 doctors and multiple meds-but I did have success. It was a good neuro that knew immediately what I had. Like many others-my anger and frustration were compounded when I was correctly diagnosed I was textbook!! I couldn't understand why they had no clue what was wrong with me and gave me eye drops and sleeping pills! I agree that when this is classified as one of the most painful afflictions known to man-why don't more people pay attention?
Who knows...
Welcome??? Jabeen 
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OUCH member since 9/5/02
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