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Topic: Asking for a flaming (Read 1452 times) |
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pubgirl
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To everyone
General post here, and yes, I know I'm going to get slaughtered but who gives a fuck!
I am becoming increasingly concerned about the number of newbies who post that they have CH and ask for help.
What follows is a string of people who then advise what treatments the person should be using. These often cover the entire range of the useful, to the possible, to the later resorts when the standard abortives and preventives have failed.
What bothers me is that it seems that very few people who offer the advice seem to have educated themselves about what other conditions could be causing the symptoms. Sometimes the person is advised to check the diagnosis via the Quiz etc, but often there are just reams of "take Verapimil/02/Imigran"
Frankly this is worrying. Some of these individuals may have PH/CPH or other Trigeminal autonomic cephalgias or even migraine. Even more worrying is that these latter conditions are relatively easy to treat, where Ch isn't. Evem MORE worrying is that Ch treatments can be actively WRONG/DANGEROUS if it is not CH.
We all know how bad the medical profession is at diagnosing CH. I think people who offer advice here need to be more careful about what they say when the newbie's first post has scanty information.
If the newbie has a confirmed diagnosis from a reputable neuro, then fine, but otherwise I think more questions should be asked before the drug recipe is offered.
I really don't want to put people off supporting, but I sense a need for more caution.
I shall go and hide in a bunker now. Let the flame war begin!
Wendy
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ckelly181
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Re: Asking for a flaming
« Reply #1 on: Mar 18th, 2004, 2:51pm » |
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Dammit, I think you've got a point...is that what you're looking for?
Chris
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pubgirl
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No, just worried for the new people arriving who may be unsure what is wrong with them
W
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Miklos
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Re: Asking for a flaming
« Reply #3 on: Mar 18th, 2004, 2:58pm » |
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If the new person states that he or she is a long time sufferer with a confirmed diagnosis, then perhaps specific suggestions are helpful, particularly when previous medication regimens are no longer working.
For those individuals are who are asking if CH is a possible diagnosis, specific recommendations are likely inappropriate.
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Don't be offended by my frank analysis. Think of it as personality dialysis.
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thomas
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on Mar 18th, 2004, 2:49pm, pubgirl wrote: Ch treatments can be actively WRONG/DANGEROUS if it is not CH.
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Hell it can be dangerous even IF you have ch. 
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FZfan
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Re: Asking for a flaming
« Reply #5 on: Mar 18th, 2004, 3:12pm » |
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I think wendy has a good point, but the problem is that people want to be helpful. And how can you distinguish on the internet between someone who says they have a valid diagnosis and someone who is lying about it?
Clusterheads have such an acute understanding of the need to deal with the pain that we will jump in to offer help and advise almost without thinking.
I also believe that people who really have them are discovering they have them by finding sites like this because it's taking their doctors too long to do it. In the overall big picture, I think it's probably better to give too much advise than not enough.
The good thing is that in every string of responses to a plea for help there is always someone who urges the person to seek professional medical help and read everything possible.
Ultimately, everyone coming here bears the personal responsibility of making sure that CH is really what they have.
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Tiannia
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Re: Asking for a flaming
« Reply #6 on: Mar 18th, 2004, 3:20pm » |
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on Mar 18th, 2004, 2:49pm, pubgirl wrote:I shall go and hide in a bunker now. Let the flame war begin!
Wendy |
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Edited Due to bad taste...
But really Wendy you are right. But I think that our Zappa fan also has a good point that we can not distinguish who is a true clusterhead and who is not. And it is not like they can get a hold of Verap or Trex without a doctor's assistance. (At least I hope not) We have to assume, unless they prove to us otherwise, that they have at least gotten some sort of indication that they might indeed have CH. And that this site can provide them with an abundance of information, but unless they are willing to do the work and read up and search and talk to thier docs, it is all useless. It seems that the new people who come here looking for a quick fix, either realize that it is not going to happen or they leave disgusted that we are resigned to our condition.
PF Wishes, sweetie.
Tia
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| « Last Edit: Mar 18th, 2004, 6:26pm by Tiannia » |
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Superpain
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Re: Asking for a flaming
« Reply #7 on: Mar 18th, 2004, 3:59pm » |
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I've had ch for 18 yrs, and knew that's what it was for about 16 yrs. Now I know there may be a chance I may have cph too, but that kind of takes a back seat.
Personally I've learned more here in 3 days than all of my doc's learned in about 100 yrs of medical school.
And any info given here is very useful to take to a doc...
After all it's not like we can write each other scripts.
That would be interesting...
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Chris
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Mac
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Re: Asking for a flaming
« Reply #8 on: Mar 18th, 2004, 4:04pm » |
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I think medical advice on any problem is dangerous. I just got in deep shit for suggesting someone was on the wrong site looking for answers for her sick child(non-CH). You know"how could you be so heartless". This woman's Doctors had no answers for her so she came here looking for advice. How would a person feel if a suggested route to wellness was taken and it was the WRONG route? I was in the middle of a cluster so I wasn't my usual eloquent  self but I stand by my statement "Giving medical advice or diagnosing an ailment is dangerous".
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Lobster
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Re: Asking for a flaming
« Reply #9 on: Mar 18th, 2004, 4:27pm » |
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Must agree with SP... they cannot write their own scripts. Worst they can do is nag their neuro.
You are correct regarding restraint and the newbie, though. But we cannot pretend that they will not scroll down two posts to the chronic threads, either. Screwed either way, I guess. Cannot protect them from themselves.
Rock
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Lizzie2
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Re: Asking for a flaming
« Reply #10 on: Mar 18th, 2004, 4:38pm » |
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Hi y'all. I just wanted to add a thought. I know you are all saying that we can't write our own prescriptions, but just remember one thing. Many people on this board can get whatever prescription they tell their doc to write. Not everyone, but many can. Also, general practice physicians are expected to know about a very broad range of medical conditions, and sometimes they are not the best educated in treatment of different headache types. Even not all neurologists know how to treat headaches. I had one neuro pump me full of dilaudid around the clock 3 years ago and tell me he couldn't help me because my MRI showed I didn't have a brain tumor. And this guy runs neurology at 2 hospitals local to me.
So even though we cannot write our own prescriptions...we must still be careful. I was just chatting with someone last night who thinks her hubby has CH, and she said they were going to his doc today and she was going to demand imitrex and O2...she learned all the stuff from reading here. However, her husband had a congenital heart defect when he was young...imitrex might not be a very safe idea! (Sorry if you read this and don't like me sharing what we talked about....you're still in my prayers!!) At any rate, we just need to be very cautious. Not everyone knows all the side effects, warnings, contraindications, etc about the meds, and unfortunately...sometimes doctors are not as all-knowing as we wish they were.
Hope I didn't step on any toes!
Lizzie 
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| « Last Edit: Mar 18th, 2004, 4:40pm by Lizzie2 » |
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BlueMeanie
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Re: Asking for a flaming
« Reply #11 on: Mar 18th, 2004, 5:52pm » |
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No matter what meds people say to try has no bearing on CH.com. Doctors are professionals and prescribe meds to THEIR patients accordingly. It has NOTHING to do with CH.com.
Agree there should be some caution and common sense in what is posted, but once again doctors a responsible for diagnosing THEIR patients.
Most replys here are people posting their own experiences and what works for them. If I go to my doc and tell him to prescribe me some strong narcotic because I read it on the internet and die from it. Should my wife sue CH.com or the doctor ? Hmmm
Common Sense People !!
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| « Last Edit: Mar 18th, 2004, 5:58pm by YOSIMITE » |
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t_h_b
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Re: Asking for a flaming
« Reply #12 on: Mar 18th, 2004, 5:59pm » |
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MDs kill many more people every year than guns do.
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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Virginia
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Re: Asking for a flaming
« Reply #13 on: Mar 18th, 2004, 6:22pm » |
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on Mar 18th, 2004, 3:20pm, Tiannia wrote:
Which side are the flamers going to and shouldn't they be moving to San Fran?
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These are the kind of comments that make people leave this board. 
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The Clusterhead formerly known as 9erfan.
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Tiannia
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Re: Asking for a flaming
« Reply #14 on: Mar 18th, 2004, 6:28pm » |
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on Mar 18th, 2004, 6:22pm, 9erfan wrote:
These are the kind of comments that make people leave this board.
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Sorry for the joke in bad taste. I have edited my post. Was not trying to offend in any way. I happen to have some wonderful life ling friends who know that I am far from being bigoted in any way. But point is taken. Again sorry for the offence.
Tia
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pubgirl
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Re: Asking for a flaming
« Reply #15 on: Mar 18th, 2004, 9:55pm » |
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I wasn't talking about the people who post who are clearly saying they are sure their condition is CH and have had it for years. I'm the same as everyone else then and will often recommend the main best treatments. I agree that it is the individual and their GP's responsibility, not ours, what happens.
As an example of what I'm trying to say:
I'm talking more about the newbies such as those who post a couple of lines about how painful their headache is and little more. They often then immediately get advised that they should be on Verapimil/Imigran/02.
All headaches are painful, even migraines . Not all one sided headaches are treated the same as CH, and not all CH sufferers should take Verapimil or even Imigran.
Again I don't think we should stop recommending the right treatments for sufferers, that is the wonder of boards like this, they plug the huge gaping holes in the Doctor's knowledge and help so many people. I just think those who do (thank God) post help for newbies should make sure they themselves have a reasonable knowledge of what they are talking about.
Wendy
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bobkip
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Re: Asking for a flaming
« Reply #16 on: Mar 18th, 2004, 10:02pm » |
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Bullshit Wendy. There are a hellofa lot more newbies helped by our board than have been harmed. The point has been well made that drugs requiring a script come from docs and we try hard to tell our newbies whether their docs are cool or not. A good example is the doc that refuses to script O2 for a clusterhead. That's such a load of crap.
Kip
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pubgirl
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Re: Asking for a flaming
« Reply #17 on: Mar 18th, 2004, 10:12pm » |
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Which particular bit of what I said is bullshit Kip?
I fail to see how asking people to be careful what they post to newbies can be bullshit. I AM NOT SAYING WE SHOULDN'T ADVISE, just perhaps ask a couple of basic questions before we do.
Wendy
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| « Last Edit: Mar 18th, 2004, 10:22pm by pubgirl » |
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pubgirl
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Re: Asking for a flaming
« Reply #18 on: Mar 18th, 2004, 10:27pm » |
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Kip, also, I am not referring to people like yourself who have an in depth knowledge of CH. and its treatments.
Thank God for people like you and this board.
W
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Lobster
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Re: Asking for a flaming
« Reply #19 on: Mar 18th, 2004, 10:30pm » |
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Lots of smart people here. Lots of people dumb as a soapdish too. I would say keep it a chatroom, not a treatment facility. Else the board might suffer.
Your point is taken. Just that then we get into the pissing contests as to who is/is not qualified to ask the questions one suggests need to be asked.
Then again, I stop by once every two years, so who gives a flip what I say.
Rock
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Melissa
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Re: Asking for a flaming
« Reply #20 on: Mar 18th, 2004, 10:31pm » |
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READ THIS LINK: http://www.clusterheadaches.com
Especially the quote below!
Quote:| DISCLAIMER: All information contained on this web site is for informational purposes only. It is in no way intended to be used as a replacement for professional medical treatment. clusterheadaches.com makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to from this site. All information taken from the internet should be discussed with a medical professional! |
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Oh, and also, here is the link that comes right after the last one... http://www.clusterheadaches.com/newvisitors.html
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| « Last Edit: Mar 18th, 2004, 10:34pm by Melissa » |
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UN_SOLVED
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Re: Asking for a flaming
« Reply #21 on: Mar 18th, 2004, 11:01pm » |
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So has anyone ever come back bitching because of some advice they got here ? Just wonderin' .
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I'm STILL alive ?
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t_h_b
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Re: Asking for a flaming
« Reply #22 on: Mar 18th, 2004, 11:14pm » |
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on Mar 18th, 2004, 11:01pm, UN_SOLVED wrote:| So has anyone ever come back bitching because of some advice they got here ? Just wonderin' . |
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The ones that got the bad advice aren't able to come back to bitch because they died from whatever it was that their physician prescribed for them. Either that or the welding O2 they obtained without a prescription killed'em.
The treatments I use that are successful for me I found here on this site. It was another poster who convinced me to start with verapamil. It was information available here plus Thomas & Giovanni (I think it was those two) who got me on melatonin which has almost eliminated my headaches. It was information here that made me request Imitrex vials rather than whatever might have been given to me if I hadn't asked. Plus I never ever would have put up such a big fight for the O2 if I hadn't read about it being so effective right here on this site.
I appreciate all of the help I have gotten here. It has made such a difference in my life that I can't even begin to describe it to anyone who doesn't have CH and I don't need to explain to those who have CH.
The least we can do is help others. I am quite sure that this site has saved many lives, or at least more than it's cost. It's just too bad that some of the suffers who killed themselves to stop the misery didn't come here first.
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| « Last Edit: Mar 18th, 2004, 11:21pm by t_h_b » |
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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CPM
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Re: Asking for a flaming
« Reply #23 on: Mar 18th, 2004, 11:23pm » |
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OH FU*K! DON'T TELL ME I HAVE CPH TOO!
WHAT ELSE DO YOU THINK I MAY HAVE?
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pubgirl
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Re: Asking for a flaming
« Reply #24 on: Mar 18th, 2004, 11:27pm » |
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Could somebody please tell me where I suggested NOT giving advice. 
I'm talking about making the advice we give even better.
Wendy
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