Author |
Topic: OUCH Members (Read 1651 times) |
|
don
Guest
|
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.
|
|
 IP Logged |
|
|
|
kim
New Board Newbie
I love YaBB 1G - SP1!
Posts: 7
|
 |
Re: OUCH Members
« Reply #1 on: Jul 6th, 2003, 2:12pm » |
 Quote  Modify
|
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?
********
|
|
IP Logged |
|
|
|
catlind
CH.com Alumnus
New Board Hall of Famer
Taz taught me the cluster dance
  
Gender: 
Posts: 3433
|
|
Re: OUCH Members
« Reply #2 on: Jul 6th, 2003, 2:15pm » |
Quote Modify
|
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
|
|
IP Logged |
A true friend is someone who reaches for your hand and touches your heart
If yer gonna be stupid, ya gotta be tough
|
|
|
FrankF
CH.com Alumnus
New Board Old Timer
Gender: 
Posts: 269
|
|
Re: OUCH Members
« Reply #3 on: Jul 6th, 2003, 2:18pm » |
Quote Modify
|
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.
|
|
IP Logged |
|
|
|
BobG
New Board Hall of Famer
Gender:
Posts: 5747
|
|
Re: OUCH Members
« Reply #4 on: Jul 6th, 2003, 2:24pm » |
Quote Modify
|
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.
|
| « Last Edit: Jul 6th, 2003, 2:25pm by BobG » |
IP Logged |
Stay stressed. Never relax. Never sleep. Ever.
|
|
|
OneEyeBlind
New Board Hall of Famer
Yea, I can do this
Posts: 574
|
|
Re: OUCH Members
« Reply #5 on: Jul 6th, 2003, 2:45pm » |
Quote Modify
|
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 !!!!!!!!!!!!!!!!!!!!!
|
|
IP Logged |
One cannot step twice in the same river, for fresh waters are forever flowing around us.
|
|
|
catlind
CH.com Alumnus
New Board Hall of Famer
Taz taught me the cluster dance
Gender:
Posts: 3433
|
|
Re: OUCH Members
« Reply #6 on: Jul 6th, 2003, 2:47pm » |
Quote Modify
|
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
|
|
IP Logged |
A true friend is someone who reaches for your hand and touches your heart
If yer gonna be stupid, ya gotta be tough
|
|
|
KingOfPain
New Board Hall of Famer
Disgusted!
Gender:
Posts: 1552
|
|
Re: OUCH Members
« Reply #7 on: Jul 6th, 2003, 3:10pm » |
Quote Modify
|
don,
Congratulations.
That is quite a compliment to be invited.
Will post later (questions) if I think of something Clusterville has not covered.
KingOfPain 
|
| « Last Edit: Jul 6th, 2003, 3:14pm by KingOfPain » |
IP Logged |
Arrived August, 1999.
We swallow greedily any lie that flatters us, but we sip only little by little at a truth we find bitter.
- Denis Diderot
Real friendship is shown in times of trouble; prosperity is full of friends. - Euripides
|
|
|
oringkid
Guest
|
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)
|
|
IP Logged |
|
|
|
BobG
New Board Hall of Famer
Gender:
Posts: 5747
|
|
Re: OUCH Members
« Reply #9 on: Jul 6th, 2003, 3:45pm » |
Quote Modify
|
Thanks catlind........I hadn't heard of it. It should make a lot of ch'ers happy.
|
|
IP Logged |
Stay stressed. Never relax. Never sleep. Ever.
|
|
|
eyes_afire
New Board Hall of Famer
Gender:
Posts: 1227
|
|
Re: OUCH Members
« Reply #10 on: Jul 6th, 2003, 3:58pm » |
Quote Modify
|
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...
|
|
IP Logged |
Still around... in a brand new world now...
|
|
|
catlind
CH.com Alumnus
New Board Hall of Famer
Taz taught me the cluster dance
Gender:
Posts: 3433
|
|
Re: OUCH Members
« Reply #11 on: Jul 6th, 2003, 5:47pm » |
Quote Modify
|
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
|
|
IP Logged |
A true friend is someone who reaches for your hand and touches your heart
If yer gonna be stupid, ya gotta be tough
|
|
|
Wendy the Brit
Guest
|
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
|
|
IP Logged |
|
|
|
rumplestiltskin
Guest
|
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 they their child had CH what would they do for them?
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
|
|
IP Logged |
|
|
|
Linda_Howell
CH.com Alumnus
New Board Hall of Famer
Hearing is one thing. Listening is another.
Gender:
Posts: 6721
|
|
Re: OUCH Members
« Reply #14 on: Jul 6th, 2003, 7:18pm » |
Quote Modify
|
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
|
|
IP Logged |
Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
|
|
|
oringkid
Guest
|
Thanks Den, I will check it out!!!
Sherry
|
|
IP Logged |
|
|
|
Charlie
CH.com Alumnus
New Board Hall of Famer
Happy to be here
  
Gender:
Posts: 14968
|
|
Re: OUCH Members
« Reply #16 on: Jul 6th, 2003, 8:39pm » |
Quote Modify
|
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
|
|
IP Logged |
There is nothing more satisfying than being shot at without result---Winston Churchill
|
|
|
Karla
CH.com Alumnus
New Board Hall of Famer
One of Many and Never Alone - Join OUCH
Gender:
Posts: 3090
|
|
Re: OUCH Members
« Reply #17 on: Jul 6th, 2003, 8:54pm » |
Quote Modify
|
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?
|
|
IP Logged |
Karla
suffer chronic ch
ch.com groupie since 1999
Proud Mom of Chris USMC Semper Fi
|
|
|
catlind
CH.com Alumnus
New Board Hall of Famer
Taz taught me the cluster dance
Gender:
Posts: 3433
|
|
Re: OUCH Members
« Reply #18 on: Jul 6th, 2003, 9:09pm » |
Quote Modify
|
I would love to see the issue of psylocin/psylocibin addressed. At least have it looked at as a possible avenue for relief.
Cat
|
|
IP Logged |
A true friend is someone who reaches for your hand and touches your heart
If yer gonna be stupid, ya gotta be tough
|
|
|
Nathan
New Board Veteran
mufon member looking for serious ufo/alien stories
Gender:
Posts: 111
|
|
Re: OUCH Members
« Reply #19 on: Jul 6th, 2003, 10:02pm » |
Quote Modify
|
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
|
|
IP Logged |
field investigator for mufon(mutiual ufo network) looking for serious people only to share their stories with me. total anominity promised. chs and alien abduction may be related.
|
|
|
don
Guest
|
Quote:IMHO fuck insurance questions.
|
|
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 !)
|
| « Last Edit: Jul 6th, 2003, 11:33pm by don » |
IP Logged |
|
|
|
JDH
CH.com Alumnus
New Board Hall of Famer
We will get by, We will survive!
Gender:
Posts: 2453
|
|
Re: OUCH Members
« Reply #21 on: Jul 7th, 2003, 9:41am » |
Quote Modify
|
on Jul 6th, 2003, 2:47pm, catlind wrote: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 |
|
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
|
|
IP Logged |
9-11-01, to remember is to honor.
It's not what you know, it's what you can prove.
ECH established 1985
|
|
|
CJohnson
New Board Old Timer
Cannot kill the family, Battery is found in me
Gender:
Posts: 442
|
|
Re: OUCH Members
« Reply #22 on: Jul 7th, 2003, 10:23am » |
Quote Modify
|
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
|
|
IP Logged |
Through water and fire. From the lowest dungeon to the highest peak, I fought the Beast. Until at last, I threw down my enemy and smote his ruin upon the mountainside.
|
|
|
Jayne
CH.com Alumnus
New Board Hall of Famer
Pull my finger!
Gender:
Posts: 1460
|
|
Re: OUCH Members
« Reply #23 on: Jul 7th, 2003, 10:42am » |
Quote Modify
|
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.
|
|
IP Logged |
If you haven't laughed today, it's been a wasted day.
|
|
|
catlind
CH.com Alumnus
New Board Hall of Famer
Taz taught me the cluster dance
Gender:
Posts: 3433
|
|
Re: OUCH Members
« Reply #24 on: Jul 7th, 2003, 10:47am » |
Quote Modify
|
Yes Jayne, Don is attending as the OUCH USA Representative.
Cat
|
|
IP Logged |
A true friend is someone who reaches for your hand and touches your heart
If yer gonna be stupid, ya gotta be tough
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
Remove
test rss