|
||
|
Title: Asking for a flaming Post by pubgirl on Mar 18th, 2004, 2:49pm 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 |
||
|
Title: Re: Asking for a flaming Post by ckelly181 on Mar 18th, 2004, 2:51pm Dammit, I think you've got a point...is that what you're looking for? ;;D Chris |
||
|
Title: Re: Asking for a flaming Post by pubgirl on Mar 18th, 2004, 2:57pm No, just worried for the new people arriving who may be unsure what is wrong with them W |
||
|
Title: Re: Asking for a flaming Post by Miklos on Mar 18th, 2004, 2:58pm 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. |
||
|
Title: Re: Asking for a flaming Post by thomas on Mar 18th, 2004, 2:58pm on 03/18/04 at 14:49:50, pubgirl wrote:
Hell it can be dangerous even IF you have ch. ;) |
||
|
Title: Re: Asking for a flaming Post by FZfan on Mar 18th, 2004, 3:12pm 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. |
||
|
Title: Re: Asking for a flaming Post by Tiannia on Mar 18th, 2004, 3:20pm on 03/18/04 at 14:49:50, pubgirl wrote:
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 |
||
|
Title: Re: Asking for a flaming Post by Superpain on Mar 18th, 2004, 3:59pm 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... ;;D |
||
|
Title: Re: Asking for a flaming Post by Mac on Mar 18th, 2004, 4:04pm 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". |
||
|
Title: Re: Asking for a flaming Post by Rock_Lobster on Mar 18th, 2004, 4:27pm 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 |
||
|
Title: Re: Asking for a flaming Post by Lizzie2 on Mar 18th, 2004, 4:38pm 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 :) |
||
|
Title: Re: Asking for a flaming Post by BlueMeanie on Mar 18th, 2004, 5:52pm 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 !! |
||
|
Title: Re: Asking for a flaming Post by t_h_b on Mar 18th, 2004, 5:59pm MDs kill many more people every year than guns do. |
||
|
Title: Re: Asking for a flaming Post by 9erfan on Mar 18th, 2004, 6:22pm on 03/18/04 at 15:20:25, Tiannia wrote:
These are the kind of comments that make people leave this board. :( |
||
|
Title: Re: Asking for a flaming Post by Tiannia on Mar 18th, 2004, 6:28pm on 03/18/04 at 18:22:15, 9erfan wrote:
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 |
||
|
Title: Re: Asking for a flaming Post by pubgirl on Mar 18th, 2004, 9:55pm 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 ;;D. 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 |
||
|
Title: Re: Asking for a flaming Post by bobkip on Mar 18th, 2004, 10:02pm 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 |
||
|
Title: Re: Asking for a flaming Post by pubgirl on Mar 18th, 2004, 10:12pm 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 |
||
|
Title: Re: Asking for a flaming Post by pubgirl on Mar 18th, 2004, 10:27pm 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 |
||
|
Title: Re: Asking for a flaming Post by Rock_Lobster on Mar 18th, 2004, 10:30pm 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 |
||
|
Title: Re: Asking for a flaming Post by Melissa on Mar 18th, 2004, 10:31pm READ THIS LINK: http://www.clusterheadaches.com Especially the quote below! Quote:
Oh, and also, here is the link that comes right after the last one... http://www.clusterheadaches.com/newvisitors.html |
||
|
Title: Re: Asking for a flaming Post by UN_SOLVED on Mar 18th, 2004, 11:01pm So has anyone ever come back bitching because of some advice they got here ? Just wonderin' . Unsolved |
||
|
Title: Re: Asking for a flaming Post by t_h_b on Mar 18th, 2004, 11:14pm on 03/18/04 at 23:01:04, UN_SOLVED wrote:
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. |
||
|
Title: Re: Asking for a flaming Post by CPM on Mar 18th, 2004, 11:23pm OH FU*K! DON'T TELL ME I HAVE CPH TOO! WHAT ELSE DO YOU THINK I MAY HAVE? |
||
|
Title: Re: Asking for a flaming Post by pubgirl on Mar 18th, 2004, 11:27pm Could somebody please tell me where I suggested NOT giving advice. [smiley=huh.gif] I'm talking about making the advice we give even better. Wendy |
||
|
Title: Re: Asking for a flaming Post by t_h_b on Mar 18th, 2004, 11:27pm on 03/18/04 at 23:23:02, CPM wrote:
A DIRTY F*CKING MOUTH!!!!! Welcome aboard! |
||
|
Title: Re: Asking for a flaming Post by t_h_b on Mar 18th, 2004, 11:36pm on 03/18/04 at 23:27:33, pubgirl wrote:
I keep hearing about a lot of crappy advice given by a lot of ignorant doctors. The CH advice here is at least as good as that given by the average physician. (To say the least.) I wholeheartedly agree with you that medications should be prescribed by a physician who takes a history and looks for contraindications. That's basic stuff in the practice of medicine and good CYA against malpractice suits. People need to read the package inserts that come with meds, too. Maybe this site needs a disclaimer, something like this: 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! Here's some good advice about health information on the internet: http://www.physiciansnews.com/spotlight/700.html |
||
|
Title: Re: Asking for a flaming Post by Rock_Lobster on Mar 18th, 2004, 11:51pm That is no way to start a Flame War Wendy. Try this: Newbs (people with less than 50 posts) should not offer advice on meds since they are, well, newbs. Non-PF Chronics (people with more than 100 posts) should not offer advice on meds since if you are still on meds after 100 posts, then you obviously know jack shit about treating CH's. ;) Thus, DJ should put in filters limiting words such as Imitrex, Verapamil, Zomig, et al to people with 50-100 posts, or 10+/- of however many posts I may have at the time. Rock Lobster Good night everyone. Hope you sleep straight through. |
||
|
Title: Re: Asking for a flaming Post by FZfan on Mar 19th, 2004, 12:07am I did say that you made a good point Wendy. Then I went on to list reason why things can get off track. Your post and the length of this thread has raised awareness of the issue you bring up, which is stated simply a need to be cautious with newbees. (of which I am one) . I understood your point about the need to not bombard new posters with instant treatment recommendations. However, it's a fine line between recommending a treatment, and relaying one's experience with a treatment. ok, this next bit is a joke so please try not to be offended... besides, anyone taking meds based solely on information they got on the internet and their own diagnosis maybe shouldn't be contributing their genes to the gene pool. ;;D I didn't say it wouldn't be in bad taste. |
||
|
Title: Re: Asking for a flaming Post by BlueMeanie on Mar 19th, 2004, 12:08am on 03/18/04 at 23:51:25, Rock_Lobster wrote:
lmao |
||
|
Title: Re: Asking for a flaming Post by Kevin_M on Mar 19th, 2004, 12:26am We "discuss" meds and I can only input from my reason for being here. First I have been diagnosed with clusters. I KNOW I have clusters. I listen, learn and improve medications and get the courage to change here, as Thomas (T H B) has posted. Being I know I have clusters, I feel free myself to ask questions and appreciate responses, about clusters. As pubgirl has pointed out, some are not sure or have not been yet diagnosed properly and ask questions. That is one point pubgirl is making. There are similar conditions as clusters which perhaps need to be treated differently. Those conditions I don't know about, but some here may have some knowledge of because they experience them. Before coming to this board I had seen doctors and neuros though first. I was lucky. I was diagnosed right. The old board was a gas but life got hard and I left. But when the results I got from those doctor's prescriptions didn't seem to work for very long I suffered. I came back to this board, found some information I needed but perhaps felt the effort to get along was too much. I left again. When the suffering again got TOO much, I CAME BACK AGAIN. Now the effort to get along is not too much for what this board has done for me. As far as clusters go, this board suits me fine. I'm not going to be STUPID enough again to think the effort is too much to stay and get along. When discussing clusters, everyone here wants to help someone. Some make suggestions. Many have gotten the COURAGE here to go out and find out what the heck is going on with themselves by those suggestions. As Melissa has pointed out, that disclaimer has been written and posted for a purpose. I would consider it common sense. Many have good intentions and have made good suggestions to those with clusters. I have benefitted by those suggestions and have never held any opinion which didn't work for me against that person. I know they were trying to help. Misconstrued information given is usually pointed out or corrected by the more experienced or knowledgeable ones here, concerning clusters. If you have clusters, this board helps. Perhaps pub's message is to not "assume" whoever writes here has clusters. Is that disclaimer posted somewhere on the newbie board? Putting together what pubgirl and Melissa have posted, that would be a good idea maybe. Even putting it on the Meds and Treatments board too wouldn't hurt. It DOES keep things in perspective. Thanks everyone for the broader perspective. We are familiar with clusters here and the knowledge everyone here has is valuable, not to be wasted. I believe those who have clusters have been helped, as kip has commented. THANKS DJ Kevin M |
||
|
Title: Re: Asking for a flaming Post by Mr.YL on Mar 19th, 2004, 12:38am If you would like I will post a certified letter from my Dr. and a Judge that I suffer...ROFLOL...You are right...Mr.YL |
||
|
Title: Re: Asking for a flaming Post by Charlie on Mar 19th, 2004, 3:31am From where I sit the idea that we propound is to show up at the doctor with a large club and convince the twerp that it might be cool to look at other therapies and drugs. If not, time to find another with a brain. Quote:
Bullshit on this one. Incredibly safe. Doctors know that we're tougher than we look. Believe me; I take an anti-seizrue drug for epilepsy that scares the shit out of them. I was given all sort of things to look for. It hasn't been a problem......to bad it doesn't work better..story many an epilpetic's life. CH & seizures...what a trip that was....and you wonder why I'm known as 'Mean old Charlie" Let them know you know and make some suggestions. Hopefully after you leave he'll break out his PDR. Good luck kids. Charlie |
||
|
Title: Re: Asking for a flaming Post by sandie99 on Mar 19th, 2004, 5:15am Well, when I was first diagnosed, my neuro mentioned that I had the pleasure of suffering from both Ch and ordinary migraine. He pointed out that there same med (vermin at the time) would treat them both... But heck, it didn't work! Best wishes, sandie99 |
||
|
Title: Re: Asking for a flaming Post by 357Mag on Mar 19th, 2004, 6:20am A voice of what I hope is logic speaking here. Everyone has some very good points. But lets face facts…..a lot of newbie’s may not have a clue as to what they even suffer from, and jump the gun by posting prior to reading & researching enough to find out. For myself, I spent 3 solid days, almost around the clock [in between hits of course] reading & reading & reading. It wasn’t until then that I found I don’t suffer from migraines as the ignorant medical community had insisted and treated for 18 yrs. It was the knowledge, experience and intelligence of the members of this board that lit the light bulb in my logical mind and proved to me that I suffer from CH. I had even mentioned the symptoms of CH [not knowing it of course], to my Neuro 2 yrs ago and he literally laughed at me and told me it was all in my head….no cheit!!! Having Topomax as a preventive med, but only at 25mg x2, which does nothing, and seeing that some were taking as much as 200mg per day, I didn’t ‘ask’ for advise on this board. I simply decided for myself, since my Neuro would not help, I needed to help myself. It is this board that gave me the strength to try this and I took myself to 100mg x2. Dangerous move?…..U BET! But after having a gun to your head to stop the pain, what more does one have to lose????? My decision to self-med paid off for me and it stopped my attacks. I have this board and the information posted by all of you to thank. Had persons not been so open, informative and suggestive here, I truly believe I would not be here, typing this message today. I owe my existence and being to DJ and all of Clusteville and the truly close friends I have found here since Jan 19th, and I wish to say Thank You All. Wendy has some very valid points. And I feel that we may need to find a way to ensure an inexperienced newbie is well informed prior to posting. We certainly cannot lump a new poster who has knowledge of CH for 15 – 20 yrs with those who don’t even know what CH is. If you notice, when it comes to giving advice, I pretty much refrain. My posts have more to do with supportive commentary than treatment or meds. I am too new to CH to even consider giving med advice and have a long way to go before I do. We cannot censor what someone posts, and therefore it comes down to common sense. But maybe many repeated notices to those NEW to CH to be cautious on offering advice may help. As to the veterans on this board, I say, offer away….you may very well be saving a life….you did well with me. Peace, -dan |
||
|
Title: Re: Asking for a flaming Post by BobG on Mar 19th, 2004, 6:49am on 03/18/04 at 23:01:04, UN_SOLVED wrote:
|
||
|
Title: Re: Asking for a flaming Post by t_h_b on Mar 19th, 2004, 7:23am on 03/19/04 at 03:31:42, Charlie wrote:
Charlie, I promise you that my remark about the O2 was completely facetious. My point is that even if someone says that they take 150,000 mg of verapamil every two hours or 30mg of Imitrex every thirty minutes and someone wants to copy them (despite their quadruple bypass last week) they still have to find a doctor with enough ignorance to write for it and a pharmacist willing to fill the prescription. About the only thing you could get hold of on your own is welding O2 and it's pretty much harmless unless you set your leaky canister down on the oven door to check the turkey and the turkey happens to burst into flames.... |
||
|
Title: Re: Asking for a flaming Post by t_h_b on Mar 19th, 2004, 7:30am on 03/19/04 at 06:49:02, BobG wrote:
Don't knock the "foil hat" until you've tried it. Very few side effects and guaranteed 100% effective or your money back. DISCLAIMER: You should discuss the use of Aluminum Foil Deflector Beanies with your physician to see if it is an appropriate therapy for your particular condition and to obtain a prescription prior to attempting to use Alluminum Foil Deflector Beanies. The author of this post and clusterheadaches.com assume no responsibility for your use of the information found here. All new therapies should be approached with caution and discussed with a licensed, knowledgeable physician. The discussion on this site does not constitute medical advice. The author of this post and clusterheadaches.com make no claims regarding the effectiveness of Aluminum Foil Deflector Beanies or any other therapy mentioned or discussed. |
||
|
Title: Re: Asking for a flaming Post by Jimmy_B on Mar 19th, 2004, 8:14am This sort of thing goes on in all kinds of Health-related Message Boards. I go to a Heart-related message board & they recommend meds, surgeries, etc...& while I agree that being more careful is a good idea...I don't see any reason to stop relating info or take it any further. Unless you're looking to find a position as the Web Police. I can't take imitrex & when I first came here...I mentioned that...& even if I didn't I knew enough about my health that just because someone told me to take Imitrex, I wouldn't. As was stated before...their is a disclaimer about the web-site & unless you know a Verapamil or trex pusher...you have to see your Doc for a script. Not saying it's not possible for someone to get without a script...but if they're that idiotic...then they need a life-affirming lesson. Jimmy |
||
|
Title: Re: Asking for a flaming - newbie ranking Post by wsnyder on Mar 19th, 2004, 8:43am I would like to present a question regarding the newbie issue. I am new to posting here on the boards, I admit that. I am not a newbie to clusterheadaches.com, however, as I registered here in 2001. I have suffered with CH for 44 years and over that time have taken nearly all all of the meds discussed. How does that place me in the newbie heirarchy here? Bill |
||
|
Title: Re: Asking for a flaming - newbie ranking Post by thomas on Mar 19th, 2004, 8:46am on 03/19/04 at 08:43:23, wsnyder wrote:
I don't believe in heirarchy, if you have ch, and have read ALL of the the stuff at the front door, by all means, post away. ;;D |
||
|
Title: Re: Asking for a flaming Post by pubgirl on Mar 19th, 2004, 10:07am Bill Nobody needs permission to post something. And amount of time registered doesn't equate with amount of knowledge either! You could be registered here for years and still know diddly squat, and you could be new and know more than most. Don't believe in heirarchies either, and hope no-one read that into my initial post, which was about posting TO new people, not new people posting. Wendy |
||
|
Title: Re: Asking for a flaming Post by thomas on Mar 19th, 2004, 10:09am on 03/19/04 at 10:07:09, pubgirl wrote:
Wendy, I understand what you are doing completely, and I for one am glad that you started this thread. Sometimes we get caught up in a whirlwind and need to stop and get our focus back and get back to the business of helping each other. Ya done good. No flames from my direction. ;;D |
||
|
Title: Re: Asking for a flaming Post by floridian on Mar 19th, 2004, 10:26am http://x-flame.cz/old/fire-tapety/flame.jpg Nice one, Wendy - just pour the petrol and dare people to light a match ;;D Actually, the original post was pretty reasonable and worth talking about. I don't want to stiffle discussion of treatments, but it is easy to forget to ask some basic questions. There is a difference between a long-time sufferer who was properly diagnosed and some one who is recently diagnosed or self-diagnosed. Usually, we do a good job at spotting the self-diagnosees and tell them to get properly evaluated. But it is important to engage board newbees in dialogue without jumping to conclusions or making assumptions. |
||
|
Title: Re: Asking for a flaming Post by cootie on Mar 19th, 2004, 1:48pm "Knowledge is Power - use it as you see fit" ! I've learned alot on here.....even had to fill my doc and Brad in on a few tips on stuff....but this is a place of also shareing expiriences and it goes from there. Pam that is smart as a rock not dumb as a soapdish ;) |
||
|
Title: Re: Asking for a flaming Post by Charlie on Mar 19th, 2004, 3:00pm Sorry about my poor reading THB. I need new glasses. ::) Oh; I don't think 25 posts qualifies as a newbie. Some of us post infrequently and avoid the kind of nonsense I look for. Post away. The more info the merrier. 8) Lately, almost everything I read on the board has real information or some value. Scary. WTF has happened to us? :o Charlie |
||
|
Title: Re: Asking for a flaming Post by john123 on Mar 19th, 2004, 4:09pm I posted recently, appearing to be a newbie becuase I have not posted in 3-5 years, asking for what the latest cures are (see found cures?). I have been diagnosed with ch's. From the posts i received, you can't get alot of the cures recommended without a doctors rx who is not going to give them to you until he diagnoses you, and I did not see any others that were dangerous. Someone did mention putting a gun to my head, if I am going to take great advice like that no one is going to be able to help me. Your concerns are very well-intentioned but not necessarily well-founded. |
||
|
Title: Re: Asking for a flaming Post by forgetfulnot on Mar 19th, 2004, 7:02pm I think everyone should let it rip, remember this is the internet. If you can't digest the information here or anywhere on the internet and discern the good from the bad then you might not be in the right place. Newbie, Old-timer doesn’t mean shit. Making up standards, rules or protocols about posting in this mostly lawless environment is a complete total waste of time. Without a doubt anyone posting false or misleading information on this site will quickly be corrected. Lee |
||
|
Title: Re: Asking for a flaming Post by wsnyder on Mar 19th, 2004, 8:00pm I need to know for the Alluminum Foil Deflector Beanies: Does it have to be the heavy duty or regular thickness foil? Regular width or extra wide? Name brand or store brand? Will it be just as good if I get the foil at the Dollar Store or should I go to a a place like Lord and Taylor. Kroger? Costo? Any other "Martha Stewart" like recommendations for this? Bill |
||
|
Title: Re: Asking for a flaming Post by Melissa on Mar 19th, 2004, 8:06pm Bill, I would think it'd be easiest to use the Reynolds Wrap Oven bags since they are already pinch pleated for you. ;;D ;)mel |
||
|
Title: Re: Asking for a flaming Post by wsnyder on Mar 19th, 2004, 8:21pm Reynolds Wrap Oven bags. Got it. I would have thought those were plastic. I'll get plenty so if they work I will have more for the fast CHs. Thanks, Bill |
||
|
Title: Re: Asking for a flaming Post by renny3 on Mar 19th, 2004, 10:04pm Hey everyone, I'm one of those newbies. I'm the one that wants to demand imitrex and O2. (I'm not mad at you Lizzie2, I understand your concern) People come here for information. But it is up to them to take that information to they're doctor. Anyone can go to any doctor and demand any drug. Unless the doctor is a complete moron (althought I have seen a few) it is up to them to do a complete history before prescribing anything. As to the people getting scripts the "other way" they're asking for trouble as far as I'm concerned. Self diagnosing is dangerous but knowledge isn't. Most people, if they have half a brain (pardon the expression), will take this information and discuss it with a doctor. Most people, if they have half a brain ,won't want this diagnosis (please don't take offense) I think the intent of everyone here is to help fellow sufferers. And it should be the responsibility of the "newbie" to seek professional medical advice with the information they receive here. By the way, my husband had 2 pfn in a row. He's seeing a neuro next week. |
||
|
Title: Re: Asking for a flaming Post by Tiannia on Mar 19th, 2004, 11:03pm Everythong we do here when someone comes to the bord initially, is an assumption. Some one could tell us everything appear to know and have a valid diagnosis, and really be talking out of both sides of their mouth and bullshitting us. I believe that everyone here truely wants to help people get better. Sometimes that comes out badly, the the thought behind the advise is good. So many here want to help people to not have to go through the toment that they went throught before they were treated and diagnosed properly. And if that advise helps one person to get relief because they know the questions to ask. So in a butshell, I have to say that I agree that more info should be obtained but ultimatly we have to assume that the person is smart enough to talk to their doctor and work within the guidelines that are established by him or her. Tia |
||
|
Title: Re: Asking for a flaming Post by FZfan on Mar 20th, 2004, 1:00am on 03/19/04 at 07:30:31, t_h_b wrote:
[smiley=laugh.gif] That is the funniest goddamn thing I've read all day! |
||
|
Title: Re: Asking for a flaming Post by pubgirl on Mar 20th, 2004, 4:29am My little monster wears a tin vegetable colander on his head when he is playing knights and dragons. Would that work do you think? Wendy |
||
|
Title: Re: Asking for a flaming Post by Charlie on Mar 20th, 2004, 4:44am I have an ersatz Bavarian spiked helmet on the shelf...spike included. Might work and maybe the spike will conduct "postive energy." I suppose I could line it wilth Reynolds Wrap. ::) For you newbies who worry about our self medicating and the like, here is my technique that is entirely harmless but worked for me and does for some others: http://www.netsync.net/~charlies/ Stick around and let us know how you're getting along. Charlie |
||
|
Clusterheadaches.com Message Board » Powered by YaBB 1 Gold - SP 1.3.1! YaBB © 2000-2003. All Rights Reserved. |