|
||||
|
Title: OUCH Members Post by don on Jul 6th, 2003, 1:59pm On September 11, 2003 I will be meeting with a neurologists "cluster club" in Rome Italy. The invitation to do so has been orchestrated by OUCH UK, Professor Peter Goadsby, and Professor Nappi, an Italian Neuro, HA Specialist. OUCH Worldwide has been invited. The meeting will preceed the international 4 day International Headache Society's bi-annual congress attended by 1000 Neuros and headache specialists from around the world. Dr. D Goadsby has suggested I come to the table with 3 treatment/medical issues we face to be discussed. The suggestion box is now open. |
||||
|
Title: Re: OUCH Members Post by kim on Jul 6th, 2003, 2:12pm Oh Don, i gess it would be the preventative quagmire.........abortives seem to offer much higher rate of success and less trial and error.............and preventatives have those side effects.........what can we do to address this issue? How can we stress the importance of the roll preventatives can/must play in the treatment of Clusters..........as opposed to the same shit we see and read about migraines................. How can we make abortives more readily available to sufferers without knockin em dead with the insurance issues? ******** |
||||
|
Title: Re: OUCH Members Post by catlind on Jul 6th, 2003, 2:15pm Here are the 3 suggestions that BobP put forth to me: 1.) Educating doctors to correctly diagnose CH. 2.) Getting insurance companies to realize that CH needs different levels of medication than meegraine. 3.) What can we do to help? What research opportunities are there? Cat |
||||
|
Title: Re: OUCH Members Post by FrankF on Jul 6th, 2003, 2:18pm Two issues that keep occurring for me even after years of fighting the Beast and finally being properly diagnosed with CH: 1. I have to fight the insurance company to pay for O2. Most insurance companies will only prescribe O2 if your blood oxymeter test shows a level of 89% or less. It has NOTHING to do with O2 for treatment of clusters, but according to their coverage guidelines... that is the test. 2. Insurance companies won't pay for more than 2 Imitrex injections per month, or for more than 9 tablets per month... without making the CH sufferer jump through hoops to get more. Many neuros and GPs say more than that is dangerous to the heart (although there is no scientific evidence to back their claims). The Aetna HMO website even claims that per Glaxo's prescribing information...Imitrex IS NOT proven effective for CH... even though the FDA approved prescribing information for Imitrex injection says otherwise. |
||||
|
Title: Re: OUCH Members Post by BobG on Jul 6th, 2003, 2:24pm Wow! What a great opportunity. My suggestions….. Insurance that won’t pay for enough Imitrex because it is a “migraine" medicine. Making the insurance industry realize that clusters and migraines are two different animals. Getting the makers of Imitrex to produce auto-injectors with 3 or even 2 mg of solution instead of only the 6 mg size. Good luck with this meeting. I know you’ll do us all proud. |
||||
|
Title: Re: OUCH Members Post by OneEyeBlind on Jul 6th, 2003, 2:45pm Wow, Don !!!!!!!!!!!! This is a great opportunity !!!!!! I have to agree with the above - 1. Correct/ample dosage of meds that the insurance company will pay for and doctors will prescribe 2. More informed (better educated) doctors 3. Continuing research for a cure Knock em dead !!!!!!!!!!!!!!! If ya can't dazzle em with your brilliance, baffle em with your bullshit ......... but get our word heard !!!!!!!!!! Thanks for all ya do !!!!!!!!!!!!!!!!!!!!! |
||||
|
Title: Re: OUCH Members Post by catlind on Jul 6th, 2003, 2:47pm BobG, there is an auto injector for a 3mg trex injection that will be available next year. Thats' part of the news that our keynote speakers will be talking to us about at the convention :) Cat |
||||
|
Title: Re: OUCH Members Post by KingOfPain on Jul 6th, 2003, 3:10pm don, Congratulations. That is quite a compliment to be invited. Will post later (questions) if I think of something Clusterville has not covered. KingOfPain http://www.frinkian.com/images/smiles/new_usa.gif |
||||
|
Title: Re: OUCH Members Post by oringkid on Jul 6th, 2003, 3:39pm Great opportunity!! 1) How can we help to further research into the CAUSE of CH. I want a cure, and without knowing a cause it will be more difficult to find a cure. 2) Research on long term effects of these meds that we are taking. I was amazed to hear the Prof. G is now saying what I said all along... that Verapamil seems to lengthen cycles and even cause episodics to become chronic! (I won't say "I told ya so" but I did do a little "I knew it!!" dance LOL) 3) (for the people who do meds cuz even though I don't, I think it is a crime) Insurance problems...as above, not recognizing that CH treatment is different than migraine treatment and that limits need to be lifted or at least re-evaluated taking into consideration CH's unique MO. Failing that, the drug companies and FDA need to recognize the same thing and perhaps formulate (in the case of imitrex shots) lower dose shots (which from Cat's post, seems to be in the offing) and work with the (ch knowledgeable) doctors in creating CH treatment standards. (Unfortunately, I don't know that there is much the Prof. can do to help with the Insurance Co. problem, however leading a push for an accepted (by ins. co, FDA, and docs as well as US!) treatment guideline that is specifically tailored for CH would go a LONG way in helping IMHO) Also, I would like a website where the Prof. and other researchers would post their research findings and ideas for new research. If there already is one, let me know. I want to know all that is going on research-wise and if there was a central location to find this stuff perhaps some more of the puzzle pieces would fit together and we could find the cause and cure. There are many that are researching different areas and by putting that info together in one place, perhaps some corrolations could be made. (kinda like putting all the pieces of a jigsaw puzzle in one box so that you can look at them all at the same time and get a better idea of what fits with what other piece and what the end result may be) Can't wait to hear about this! (hey Don, you takin' the OUCH yacht to Italy? LOL) Seriously, this is great! Sherry (the longwinded one) |
||||
|
Title: Re: OUCH Members Post by BobG on Jul 6th, 2003, 3:45pm Thanks catlind........I hadn't heard of it. It should make a lot of ch'ers happy. |
||||
|
Title: Re: OUCH Members Post by eyes_afire on Jul 6th, 2003, 3:58pm Personally, I would like to find out more info on this rumor of prevenative meds making cycles longer or losing effectiveness. I think it's important to help us figure out our best treatment option. Concerning the 3mg imitrex injector... Yes Bob and Cat, it will make CHers happy ONLY IF they don't charge the same amount for less medicine. I'll bet they charge the same price regardless of dose... they do it with the pills ::). --- Steve, one of many... |
||||
|
Title: Re: OUCH Members Post by catlind on Jul 6th, 2003, 5:47pm I agree Eyes. The one thing that is important about the 3 mg injection though, is that is being formulated specifically for CH'ers - at least that was my understanding. One of the docs at the New England Center was involved in this one, and it's being done just for us, not for meegrainers ;) Cat |
||||
|
Title: Re: OUCH Members Post by Wendy the Brit on Jul 6th, 2003, 6:36pm Don What an opportunity and honour. Goadsby told about this conference when we saw him in Birmingham. Might be worth watching his presentation on video (Jonny has it or should have it soon) before you go to see his current thinking and research and treatment activities.e.g. Verapimil 'holidays', his and the Italians brain imaging showing the abnormal brain activity in the hypothalamus during an attack, the surgical interventions and newer drugs that are working etc etc etc. How about the US assisting in the genetic study? There would be so much information to be gained from the huge numbers of you, especially the 'Cluster families' in the US. W the B |
||||
|
Title: painful questions Post by rumplestiltskin on Jul 6th, 2003, 7:00pm 1st...Sherry....It seems the headache Doc's publish in CEPHALALGIA AN INTERNATIONAL JOURNAL OF HEADACHE Available here:http://www.blackwell-synergy.com/Journals/issuelist.asp?journal=cha More than you ever wanted to know. and go to Bob Johnson's post on June 17,2001 at 13:19:19 for a list of references...that'll keep ya busy. DON: What a unique opurtunity! IMHO fuck insurance questions. 1. Unified theory. Are those researching CH in agreement on ANY aspect of CH? Does the international community believe they have reached ANY definitive consensus on ANY aspect of CH. Cause, triggers, etc. If so...what? (other than it hurts a lot smart ass.) This would be the stuff that we could confidently take to our local medicine man/sawbones and say "Hey Doc...look what the experts say!" 2. CH variants. Are "chronic and episodic" the only varients or are they uncovering a host of "varieties"?Evidence from this message board seems to suggest the longer it exists ...the more folks come in describing their CH...the stranger the "standards" for CH become. 3. And on a personal note....ask em ...if We all go with you. May you be blessed with the wisdom of Ueli, the tact of Bob P, the karma of DJ, (Amanda Best's body wouldn't hurt....but that's unlikely) and as a last resort...Jonny's temper...If they give ya attitude... you have my permission to open a can a wup ass on em. Love den |
||||
|
Title: Re: OUCH Members Post by Linda_Howell on Jul 6th, 2003, 7:18pm That is so cool Don. And I echo everyone's sentiments especially: That as ch'ers, we need more than the daily reccommended allowance of Imitrex per month than the migrainers. Did ya have to sell the OUCH ship to pay for this trip? LindaH |
||||
|
Title: Re: OUCH Members Post by oringkid on Jul 6th, 2003, 7:36pm Thanks Den, I will check it out!!! Sherry |
||||
|
Title: Re: OUCH Members Post by Charlie on Jul 6th, 2003, 8:39pm Great news Don. Everyone's ideas are great. To me, it's important is to get medical types to treat us as well as other neurological patients. As an epileptic, I've always been treated very well and have jhad easy access to MDs and all kinds of help. Clusterheads are treated like dirt most of the time. Nice going Don Charlie |
||||
|
Title: Re: OUCH Members Post by Karla on Jul 6th, 2003, 8:54pm What a wonderful opportunity for OUCH and us. Many good ideas from prior posters. I think more research needs to be done to discover more preventatives. Surgical solutions for chronic sufferers. How can we help them for research? |
||||
|
Title: Re: OUCH Members Post by catlind on Jul 6th, 2003, 9:09pm I would love to see the issue of psylocin/psylocibin addressed. At least have it looked at as a possible avenue for relief. Cat |
||||
|
Title: Re: OUCH Members Post by Nathan on Jul 6th, 2003, 10:02pm short and sweet... 1) educating doctors (both neuros and general alike) about chs 2) trying to get the meds we need cheaper and "as needed" instead of runing out in the middle of the month cause we had a bad couple of weeks 3) getting the ssa to regcognise cluster headaches as an actual disability |
||||
|
Title: Re: OUCH Members Post by don on Jul 6th, 2003, 11:23pm Quote:
I agree. This will not be the appropriate forum for that discussion. The forum will have a clinical focus. Insurance comapany issues need to be discussed with the insurance companies not the doctors. This is about clinical treatment and medical issues not about the politics and economics of insurance company coverage and payment. If Blue Cross and Blue Shield were to invite us to their convention at the golf resort in Barbados, then I would present the topic to them, but not to the doctors. (P.S The next time you see the Pope on TV he will have an OUCH decal on his funny hat !) |
||||
|
Title: Re: OUCH Members Post by JDH on Jul 7th, 2003, 9:41am on 07/06/03 at 14:47:22, catlind wrote:
Cat, this is great news! I hadn't heard about it yet. Slowly but surely we're making some progress. Don, what a great opportunity. I think educating Dr's about CH is a very important subject that s/b addressed. There are too many people being misdiagnosed. Jim |
||||
|
Title: Re: OUCH Members Post by CJohnson on Jul 7th, 2003, 10:23am 1. Is there any interest by american doctors to employ the hypothalamus implant that the Italians are experimenting with? 2. Will there be a med which targets only the 5HT1d receptor soon? PFDANs -Curtis |
||||
|
Title: Re: OUCH Members Post by Jayne on Jul 7th, 2003, 10:42am That is great new!!! Are you going to go Don as our representative of Ouch USA????? We definatley need to have the Ouch USA attend this meeting. |
||||
|
Title: Re: OUCH Members Post by catlind on Jul 7th, 2003, 10:47am Yes Jayne, Don is attending as the OUCH USA Representative. Cat |
||||
|
Title: Re: OUCH Members Post by Danielle on Jul 7th, 2003, 12:07pm Congratulations Don! What a wonderful opportunity for you and CH sufferers in general. I think the topics already brought forward for discussion are excellent although I agree that issues pertaining to insurance costs should be directed to said parties rather than the medical profession. On a personal note, I am very interested in the long-term physical and psychological effects of dealing with CH (ie: depression, side effects from medication, etc.) |
||||
|
Title: Re: OUCH Members Post by Bob P on Jul 7th, 2003, 12:36pm Just to make sure nobody sees this as a cover-up, here is the full story. The OUCH Board of Directors discusssed the need to have representation at this meeting. When Don found that his calender allowed him to attend, the BoD voted to use OUCH funds to pay his travel expenses. We anticipate the entire trip will cost less than $1250, leaving OUCH with $8000+ in it's coffers. As President of OUCH, it is appropriate for Don to be the one to attend. This is important to OUCH and I'm sure Don will represent us well at the meeting. Stoke the coals Don!! |
||||
|
Title: Re: OUCH Members Post by don on Jul 7th, 2003, 12:38pm I will stoke the coals with fuel provided by Ch sufferers. Give me some fuel folks! |
||||
|
Title: Re: OUCH Members Post by ave on Jul 7th, 2003, 1:06pm Don, great opportunity! But I don't think we should leave it to neuro's and profs to educate the insurance cies. And it is of no use to go to an International meeting and ask specialists from all over the world to educate US doctors... The situation is totally different in other countries and it is the task of a national patient's organisation, like OUCH, to take up these problems with the bodies concerned in their own country. The organisation in my country has been doing this for some time. I agree totally with Sherry and Den: tell us how we can help research into the cause. Maybe let US neuro's do brain scans on a large scale, for instance. I also think side effects of medication would bear looking into, esp. the rebound or no rebound question. Most important in the short run would be to find out what sort of information or action would make US neuro's agree on a description of the condition and of basic treatment. Some countries already have such an agreed on description and a treatment protocol. For only then , wielding that description, will you have a base for dealing with insurance companies. Only then can you start telling docs about recognizing a cluster when they see one. |
||||
|
Title: Re: OUCH Members Post by MOBster on Jul 7th, 2003, 1:51pm Don, Great to hear you’ll be joining Mo and John Graham/Chris Willis from the UK, Ete from Germany, Riccardo, Piera and Stefano from Italy, Andreas from Austria, Ueli from Switzerland and Carmen from Spain representing the US at the Neurologist’s “Cluster Club” meeting in Rome in September. This invitation to Directors of the various OUCH organisations around the world is a real ‘first’ and a unique opportunity to meet with Clinicians who are tops in their field internationally to present a united front on behalf of cluster sufferers world-wide. But have you been in contact with Mo yet regarding the above invitation ? I only ask since I understood from our last Trustee meeting that the Rome date has now changed from the 11th September to the 12th?? Michael (MOB) |
||||
|
Title: Re: OUCH Members Post by don on Jul 7th, 2003, 1:56pm I just shot an email to Mo. The 12th is fine with me. |
||||
|
Title: Re: OUCH Members Post by jonny on Jul 7th, 2003, 2:00pm I think the BoD should vote to pay my expense so I can protect the president while in Italy, we all know how sneaky those wops can be. me being half wop ill fit right in.....LMMFAO ;D ........................G. Gordon jonny :D |
||||
|
Title: Re: OUCH Members Post by Mark C on Jul 7th, 2003, 2:15pm LMFAO!.........jonny you kill me! ;D What a great chance to be heard. I have read some fantastic stuff so far...what a great bunch of brains! My 2 cents worth is I would like to see the cost issue as footnote but certainly not on a front burner. I just don't see how you can completly seperate the cost from the proposed treatment....IMHO. :) on 07/06/03 at 23:23:49, don wrote:
Then again....is this to be a "Balls to the wall" approach where anything goes as far as treatment options? Just find some relief, no matter the cost? There is a principal here I am having a hard time communicating...I am searching for the words. Yall help me ;D on 07/07/03 at 12:22:58, stuey wrote:
PFDAN's Mark |
||||
|
Title: Re: OUCH Members Post by stuey on Jul 7th, 2003, 2:58pm I would ask that you bring up what the seasons, and in particular barometric pressure has to do with CHs. I don't mean pressure changes from flying, but rather barometric changes that happen gradually over extended periods of time and what these have to do with our attacks and whether low or high barometric changes are responsible. Stuey |
||||
|
Title: Re: OUCH Members Post by ZAIRA on Jul 7th, 2003, 3:13pm on 07/07/03 at 14:00:07, jonny wrote:
Your Welcome in Italy.... ;D Zaira |
||||
|
Title: Re: OUCH Members Post by jonny on Jul 7th, 2003, 3:15pm on 07/07/03 at 15:13:24, ZAIRA wrote:
Thank you very much, Zazi ;D ...............................jonny |
||||
|
Title: Re: OUCH Members Post by Big_Dan on Jul 7th, 2003, 3:33pm on 07/07/03 at 14:00:07, jonny wrote:
LMMFAO!!!!..... ;D ;D ;D ... Hey Don... I'm kinda unedumakatid with some of the medical factors of CH... but maybe ask about divated septums, and allergies... ... I've got a deviated septum blocking 75% of my right sinus (the CH side) and am extreamly allergic to grass (LMFAO) and other pollens... wondered if that might have something to do with it... ... thanks, ya wet puss... ;D -Big Dan |
||||
|
Title: Re: OUCH Members Post by taraann on Jul 7th, 2003, 5:01pm Everyone's suggestions are really great IMHO. I have one to add...don't know if its a great or just plain crazy as I'm new to ALL of this information on CH. I recently read (from a few different websites some from links I got here) that there is a surgery they can do that might help ppl with ch (I believe more for the chronics than episodics like me) but much much more research seems to be needed on this surgery. Does anyone know what I am referring to....if not let me know and I will try to find the links to post. I'm a "bit" sleep deprived so my explaining skills aren't nearly up to par. Tara Ann |
||||
|
Title: Re: OUCH Members Post by Live4Fun on Jul 7th, 2003, 8:20pm Don, First of all congratulations on the invitation! Second, my thoughts for questions are pretty much along the same lines as everyone elses: 1. Educating doctors - specific course material during med school for neuros, gp's, and ER staffs. 2. A treatment plan (like the flowchart thread that is going around) so that doctors know the first step to take, the next step, etc. My 1.5 cents ;D Bryan |
||||
|
Title: Re: OUCH Members Post by Drk^Angel on Jul 7th, 2003, 8:47pm I don't have any questions that haven't been already mentioned... So instead... Make sure you thank them for all the hard work and effort that they have put forward for cluster headaches. A lot of clusterheads depend on the research that they and their peers do, and we all owe them our greatest, and most sincere, gratitude. PFDAN.................................. Drk^Angel |
||||
|
Title: Re: OUCH Members Post by oringkid on Jul 7th, 2003, 9:42pm I've been looking into some things and there is one thing I would love for you to ask about. Oxygen....not as an abortive, but whether anyone has looked into a lack of oxygen to a specific part perhaps as at least a big part of this puzzle. I'm noticing more and more corrolations between oxygen and CH.... I wrote more about this on the "exercise triggers my ch" (or something like that) thread. Sherry LOL Jonny, I can see it now... long dark hair, dark glasses... they would DEFINITELY listen to whatever Don had to say! ;D Specially if you wore a suit too! |
||||
|
Title: Re: OUCH Members Post by Not4Hire on Jul 8th, 2003, 1:22am don... iffen I was in yer shoes, I'd be one scared Muffker..... this is a singular chance to put the *case* before the bastiges who are MOST likely to make a difference....clinically and medically... I could *muddy* the waters with a couple questions I have (circadian rythms, psilocybin, and systemic oxygen uptake) , but the MB has put the MEAT of it before you.... weed out the bullshit whining about what it costs and how bad it hurts....about the *politics* and the mechanics of When-and-How to take Imitrex, (etc.).... you are going to be talking to SCIENTISTS at this one..... not Insurance FUCKheads.... these guys are the SwinginDicks and on the cutting edge of research.... I realize that, as sufferers, we can really only offer anecdotal input... but please make it clear to them that we have come forth on a cyber-forum, with our concerns and our willingness to be *guinea pigs and lab-rats* and we WILL be heard.... be our *voice*... and in the name of Mildred, I thank you for you courage and conviction..... good luck brother, I KNOW you can do this.......and do it well.... Steve(N4H) |
||||
|
Title: Re: OUCH Members Post by don on Jul 8th, 2003, 12:51pm I dont normally bump but I need all the input I (WE) can get. |
||||
|
Title: Re: OUCH Members Post by BobG on Jul 8th, 2003, 3:08pm I'm one of those that said bitch about the insurance companies but after reading yours and all the other replies I agree with you. Forget the insurance compancies and the drug manufactures in your discussions. Stick to the medical/scientific subjects. And a bump to the top |
||||
|
Title: Re: OUCH Members Post by tommyD on Jul 8th, 2003, 3:12pm Dammit, don, stop making me think! Development of tools for the diagnosis of clusters might be an important topic to raise with the researchers. I read recently of a scan Dr. Goadsby did that showed higher temperatures in the brains of cluster sufferers, and this might be used for a physical diagnosis. If a simple test done on common scanning equipment could be developed, this could reduce misdiagnosis and eliminate doubts. This would be a godsend for all cluster sufferers, and is especially important to us shroom believers looking to see hallucinogens legalized for medical use sometime in the future. One of the hurdles for legalizing indole-ring hallucinogens is that clusters at present are usually diagnosed on the basis of a patient’s description of symptoms. Unless a clusterhead has an attack in the doctor’s office, it’s the only way to make a diagnosis. This creates a drawback for legalization, since the argument could be made that it would be too easy for a drug abuser to obtain a prescription for hallucinogens simply by memorizing a list of symptoms. A physical diagnostic tool would eliminate this problem and perhaps make it easier to legalize hallucinogens as a treatment for clusters. -tommyD |
||||
|
Title: I'm back Post by rumplestiltskin on Jul 8th, 2003, 5:00pm Shit.... if I'd knowd bein a dumbass president of OUCH came with internashunal travel....ah...hell...I'd be too skeerd to talk to them fancy Doc's anyway. and HEY...Not4 mentioned somthin very important....GUINEA PIGS!!! I venture to say that most CHers would jump at the oppurtunity to further serious research into CH. If given the oppurtunity please impress upon them that we are a legion of well connected (communication wise) CHers who are anxious to volunteer our bodies(some more than others), info and whatever else they need to cover large numbers of specimens...and speciwomens.... Goadsby mentioned years ago that more "pathology" was needed....as in cuttin up dead Clusterbrains. I pursued this with him by e-mail...butt finally got ignored. Is there some process whereby I can insure that my freshly deadhead gets sliced and diced for Cluster research? The Docs should know what obstacles we'd have to overcome, what papers need to be filed...etc etc. ANYWAY..."How kin we hep ya docs?" Git up on a table an yell that!...yea ....do that!!! K?...K! ...oh yea...and ask if theres a relationship between lookin at them healin dolls and my nightmares...would weed help? Good Grief den |
||||
|
Title: Re: OUCH Members Post by Marc on Jul 8th, 2003, 8:27pm Den's post reminded me of something: Awile back, I had some email conversations with Dr. Matharu (he works with Goadsby) about their interest in genetics and CH's. He asked if my brother (also a CH'er) and I would provide would supply blood samples for study. Later, he said that the logistics (cost) of tranporting whole blood wouldn't allow it. I wonder if we (OUCH) could offer assistance in doing things like this. I don't mean specifically blood samples, but anything thing that we could collectively pool our resources to make happen. There is a whole lot of energy here, we just need to focus it. OK Den, you get to supply the first brain section sample........ ;D Marc |
||||
|
Title: Re: OUCH Members Post by don on Jul 8th, 2003, 8:29pm Weed may help the poor healing dolls to get out of your head. Pathology, cuttin up yer head? Would you like me to reserve some space for you in the catacombs? |
||||
|
Title: Re: OUCH Members Post by andy on Jul 9th, 2003, 12:40am on 07/08/03 at 15:12:20, tommyD wrote:
Yeah, what tommyD said ...........andy |
||||
|
Title: Re: OUCH Members Post by Callico_Kid on Jul 9th, 2003, 1:06am Great opportunity! My three suggestions would be: 1) Further research into the cause of CH utilizing us as a test base. how can we participate in such study? (It is in my will for by brain to be studied, but I don't want to wait until then for a cure!) 2) Developement of a regimen of treatment that is unique to CH and is recognized as such. Something that will lend credence to our need to not be limited to the treatment options available to other HAs. 3) I would like to see psilocin studied more thouroughly under clinical conditions with the goal of either legalizing the use of shrooms by prescription or the developement of a med that will replicate its reaction with the neurotransmitters in the brain. I know that is what LSD was originally developed for, but it would need to be something without the potential for abuse that LSD has in order to gain medical acceptance. |
||||
|
Title: Re: OUCH Members Post by suzy617 on Jul 9th, 2003, 6:24am The only question I can think of is what was previously mentioned about the season changes and the effect on CH. I get them every sept. when the weather starts changing and also I think of when Jim goes down to florida how his disappears. Good luck with the meeting Don! Suzy |
||||
|
Title: Re: OUCH Members Post by catlind on Jul 9th, 2003, 7:11am What about the finger length thing? Did we ever come up with any figures for that? Is it possible there is a correlation with hormones? Cat |
||||
|
Title: Re: OUCH Members Post by CJohnson on Jul 9th, 2003, 9:50am on 07/09/03 at 01:06:49, Callico_Kid wrote:
Here, here. I like this one. PFDANs -Curtis |
||||
|
Title: Re: OUCH Members Post by Edna on Jul 9th, 2003, 10:49am 1. First above all else to me would be the EDUCATION in diagnosing of ch. Agree that ALL doctors, AND nurses too should be educated to be able to recognize that we ARE NOT the typical HA type. My son was in clinicals in nursing and up to that point had ONE PARAGRAPH devoted to "teaching" him about ch. ONE....if that is all we are worth to nursing education I would think we fall NO WHERE among those studying to be doctors. 2. TREATMENT......insurance issues aside, once the medical profession is educated as they should be, should come the knowledge of treatment. I would be anxious to know how many other diagnosed conditions are left to the trial and error, miss and hit chance as we are. Especially coming from my end of the spectrum, being episodic....with no offense to chronic sufferers. If I cycle only once every 2 yrs........am I left with YEARS of trial and error efforts before finding a working treatment? 3. Before we can have a CURE.........the exact cause needs to be found. And, unless I've missed it, I don't think it has definately been done yet. there you go don.......my lil opinion and hope it helps for whatever it's worth. God speed to you don, I thank you for your effort before knowing whatever outcome! You're doing us proud! EDNA |
||||
|
Title: Re: OUCH Members Post by Edna on Jul 9th, 2003, 10:18pm too far gone don............here's a bump |
||||
|
Title: Re: OUCH Members Post by don on Jul 9th, 2003, 10:54pm Thank you Edna. Whatever the result, OUCH will be represented with dignity and professionalism. I can promise that. At the very least we will open some eyes. Doc 1. Who are these people? Doc 2. OUCH Doc 1. OUCH ? Doc 3. Yes OUCH. Pay attention !............. To them! |
||||
|
Title: Re: OUCH Members Post by don on Jul 10th, 2003, 6:41am I discovered this morning that Riccardo and Carmen (OUCH Spain) will be staying at the same hotel as me. The conferance is on September 11. Tough day. |
||||
|
Title: Re: OUCH Members Post by Georgia on Jul 10th, 2003, 9:19am Don - Do you know what the other OUCH reps will be asking about? I have faith that y'all have talked about it and are not duplicating any questions. I am just curious as to what else will be brought to the table from our side of it. |
||||
|
Title: Re: OUCH Members Post by don on Jul 10th, 2003, 10:11am We are in email discussion regarding duplication and are arranging to meet prior to the conferance. What we bring has been narrowed down to one issue. Please read and respond to my "Interesting Observation " post |
||||
|
Title: Re: OUCH Members Post by Linda_Howell on Jul 10th, 2003, 10:33am A day or 2 ago, a guy posted that he hadn't been here for a few yrs. and that he "see's that the same people are here and NOTHINGS CHANGED" I hope that person has read these 3 pages. LindaH |
||||
|
Title: Re: OUCH Members Post by MarkHW on Jul 10th, 2003, 11:12am Everything mentioned is important, but until they find better treatments, help us with disability, etc. My #1 is MORE IMITREX for Cluster Patients! Thanks...Mark |
||||
|
Title: Re: OUCH Members Post by don on Jul 10th, 2003, 12:06pm Valid issue Mark, but not for this conferance. |
||||
|
Title: Re: OUCH Members Post by ZAIRA on Jul 11th, 2003, 12:02pm on 07/10/03 at 06:41:45, don wrote:
Also Zaira is in Rome on September... Don, see you on 12 September for dinner... it will be a pleasure to meet you... Zaira ;D ;) |
||||
|
Title: Re: OUCH Members Post by don on Jul 11th, 2003, 12:08pm It will be a pleasure to meet you and all of my OUCH colleagues. |
||||
|
Title: Re: OUCH Members Post by ZAIRA on Jul 11th, 2003, 12:39pm When do you come in Rome...?? I and Ricky are organizing a nice evening ;D... sorry I'd like to spend more time with you all but I can't... remember with me, you have to speak very veeeeery slowly... ;D ;D Zaira :P |
||||
|
Title: Re: OUCH Members Post by Bob P on Jul 11th, 2003, 12:52pm Ask if we can be a part of this: November 14-16, 2003 Scottsdale Headache Symposium Marriott's Camelback Inn Resort & Spa Scottsdale, Arizona For further information contact: American Headache Society (AHS) 19 Mantua Road Mount Royal, NJ 08061 856-423-0043 856-423-0082 fax ahshq@talley.com http://www.ahsnet.org Goadsby is part of this org and is usually at these things. There is usually one session on CH. Trouble is that these are the headache guys. They know and understand CH. It's the freakin' GPs that give us the run around until we get to a CH knowledgable neuro. We may be preachin' to the choir here. |
||||
|
Clusterheadaches.com Message Board » Powered by YaBB 1 Gold - SP 1.3.1! YaBB © 2000-2003. All Rights Reserved. |