Anyone's doctor on board about busting?

[johnny]

I am going to the Portland meeting, the first Clusterbusters meeting for me and looking forward to it!

thats fantastic! just curious but do you think doctors would recommend this treatment if they  didn't get kick back from pharmaceutical companies?

[Bonkers]

Hi Clustermom13,

Good to hear Andrew is doing so well. It's taken a long time but you two have stuck it out and are now in the process of reclaiming Andrew's life. I'm sooo happy for you both. Hurray! hurray!

Your friends,

Mike and Ron

[Bonkers]

Hi BostonHeadacheDoc,

Welcome aboard. Very glad to have you here. I wish that all the good men and women who care for us had your attitude. Hope you enjoy the convention.

Ron

[jayhedges]

Thanks Doc and you will inspire many others to follow your lead. It means a lot to us. Stick around and read this board for a while and you will see the frustration people in excruciating pain go thru because the medical community is not informed and the few that are have their hands tied. Then notice the support we get from each other.

[BostonHeadacheDoc]

Thanks for the comments folks.

To Johnny who wrote 'just curious but do you think doctors would recommend this treatment if they  didn't get kick back from pharmaceutical companies?'. I think you are serious and that is troubling. Physicans not recommending this has everything to do with poor knowledge, legal concerns and the conservative nature; nothing to do with Pharma. . Without Pharma patients would be way worse off.

[jayhedges]

Boston Doc:

I respect your comments about Pharma kickbacks. I am aware of the changes in the laws about 10 years ago and know the days of drug reps wining and dining docs are over.

You will get some push back from many on this site who feel we would have been better off never starting the meds as many of us have had no positive results and some have had horrible side affects over decades of meds.

My starting protocol was Imitrex for aborting the pain, Prednisone taper and then Verapamil. None of which gave me any relief. When I found this site, I was on 25 lpm welding O2 in a week and immediate aborting of each HA in 10 to 20 minutes. It was immediate and amazing. Some here can list over 30 meds they have been prescribed by well meaning docs who are treating this relatively unknown condition like a Migraine or worse like we are crazy.

I really appreciate the interest you have taken, and know you will learn a lot here but there isn't much decorum as we tend to say it like we "feel it". And you never know if you are talking to a CEO, Health Care Administrator, Teacher or someone on Disability due to CH. Everyone is equal here.

Thanks again.

[raquelinkansas]

Well said Jay.  The whole enchilada you said above.

Rock

[Psiloscribe]

Whether we like it or not, research is driven by the pharmaceutical and medical device industries. That is where the money for the research comes from and they decide on the directions we take.

Although some of the decision making is based upon profits, they are also looking for new things that will work better. One, that will do what they are in the business of, helping people, and in turn, feed profits and more research.

So, the goal is to bring to market, something that works better than already exists. That's our goal also. Something we all want.

Unfortunately many things have been brought to the market that aren't better and oftentimes worse. I know I tried my share.

That said, we rely upon these companies to help us. I have no problem with anyone making money. Hell, I hope someone cures clusters and buys Microsoft.

The cure most likely will not come from the monks in Tibet or the Amish in Pennsylvania. (Come to think of it, they may have the cure and we'll never hear of it).

The National Institutes of Health spent a total of 8 million dollars on headache research last year and as paltry a sum that is, not one dollar of it was on clusters.

The Pharma's have done some great things and have helped millions of people live longer and better.

Clusters aren't one of their strong suits though. Almost every pill we're offered was designed to help conditions other than clusters. They haven't given doctors much to work with when it comes to clusters.

"Here, try this. It helps migraines maybe it'll help with clusters"

"Here, try this device. it helped Parkinson's patients, maybe it'll help cluster patients!!!" ?????

I do wonder alot about the mixed signals we get sometimes though. At the last OUCH conference, Dr. Goadsby said that he felt that in a few years, the ONSI and DBS will be thought of as barbaric.

Is this new device that much less barbaric?

I guess I'm ahead of the curve because I already think they are barbaric.

He is also quoted as saying, in reference to psychedelic treatments, that medical science should be ashamed of themselves if the best they can offer is a 60 year old drug that causes hallucinations.

All I can say to that is, and I really don't want this to turn into a bash the professions or professionals thread, but, suffice it to say that there should be some shame now that this drug has sat silent for 60 years, hidden away even though people knew it's potential. It hasn't been 60 years because it doesn't work or because something better has been found.

Can the same be said about penicillin? Still seems to be pretty good stuff 80 years after it was discovered. Good thing the side effects are not hallucinations and only consist of: "The most common reactions to oral penicillin are nausea, vomiting, epigastric distress, diarrhea, and black hairy tongue."

Have a good day everyone. We're all fightin the good fight. We're all in this together and everything moves us forward.

Bobw

[davidj]

I am going to the Portland meeting, the first Clusterbusters meeting for me and looking forward to it

Thank you!!! If only we had more open minded Dr's we might have a chance of not hiding our therapy from our own Dr's and worrying about it.

David

[Dallas Denny]

Thank you!!! If only we had more open minded Dr's we might have a chance of not hiding our therapy from our own Dr's and worrying about it.

This post by David is absolutely "spot on" and I would like to add my Thank You to you as well Doc!! 

Dallas Denny

[raquelinkansas]

The National Institutes of Health spent a total of 8 million dollars on headache research last year and as paltry a sum that is, not one dollar of it was on clusters.

That is just sad.  Its the most painful headache out there.

Thank you!!! If only we had more open minded Dr's we might have a chance of not hiding our therapy from our own Dr's and worrying about it.

This post by David is absolutely "spot on" and I would like to add my Thank You to you as well Doc!!

Dallas Denny

I concur.

[johnny]

Thanks for the comments folks.

To Johnny who wrote 'just curious but do you think doctors would recommend this treatment if they  didn't get kick back from pharmaceutical companies?'. I think you are serious and that is troubling. Physicans not recommending this has everything to do with poor knowledge, legal concerns and the conservative nature; nothing to do with Pharma. . Without Pharma patients would be way worse off.

i understand and i appreciate that. i would imagine that for doctor this ailment must be extremely challenging.

i sincerely hope that you hang out here with us after the porland convention and ask questions and post comments. i think we are gaining steam with this and your interest is surely appreciated.

[BostonHeadacheDoc]

Well, well, it is going to be an interesting meeting!

I do really want to learn about what you folks do and hopefully will hear some stories etc.

Frustration and anger I feel should be directed against the NIH and politicos who will not invest a dime in this disorder (our tax money); and, directed to increase awareness amoung health providers. In Feb 2009 I did go to Washinton and lobbied for more headache research- into the offices of my 2 senators (Kerry and Kennedy) and 6 congressional offices.

Incidentally I do see some CH sufferers who respond to medications well- likely are not here! I am a bit sensitive to open Pharma bashing as at least they are helping some people.

[Chad]

BostonheadacheDoc, I do believe some pharma drugs are necessary for some conditions and some do reduce the intensity of cluster cycles, but the side affects far outweigh the affects we get from these alternative therapies.  For instance, one pharma drug causes a nasty side affect which can be fixed with yet another pharma drug and so on.  It's a vicious cycle.  With Clusterbusting, you can just relax and not worry

about any of those nasty side affects that drugs like Verapamil and Topamax cause.  It's bad enough we have clusters, we don't need nasty affects added to it.

I had a neuro visit this morning and he 100% backs me up using simple Oxygen as my abortive and Rivea Corymbosa seeds as my preventative.  The O2 costs me $36 to fill an "M" tank and $18 to fill a "E" tank.  The seeds are $12 for 100 (they give far more than 100 in the package).  That's pretty darn cheap considering neither of these things are covered by my insurance.  This country needs to focus on more remedies without relying on pharmaceuticals.  We need to find things that prevent the need of Pharmaceuticals.  A lot of that industry is all about "money".

I do appreciate your input and curiosity of this alternative method of treating cluster headaches.  It's a pleasure to have doctor on the board here.  Sorry for the rant.

Chad

[Poli]

Yes, I told my doctor and he wrote this (the second report)

http://www.ouch-us.org/medications/psilocybin_lsd.htm

Saludos

Poli

[Guest]

Yes, I told my doctor and he wrote this (the second report)

http://www.ouch-us.org/medications/psilocybin_lsd.htm

Saludos

Poli

Hello Poli,

Hope your still doing well.

This is the report I posted on OUCH(UK) back in 2006.

The trustees decided it was not suitable for a CH message board, & removed it.

I disagreed, & re posted it.

I was then banned from the site.

If you take a glance at OUCH(UK) today, there is no mention of the very positive effects  Alternative treatments are having for many CH sufferers.

Most, if not all are guided towards ONSI, once all other conventional Meds have been exhausted.

This is not a post intended to bash OUCH(UK)

Many sufferers will have spent years living alone with this condition. To then enter a place where one can communicate with other sufferers, can, & has been a life saver for many.

However, to only offer sufferers treatments that are handed down by the doctors at Queens Square, & not at least, let them no of the very positive results many on this forum are having using Alternatives, is in my opinion, very irresponsible by those who choose to place themselves in charge. The Trustees.

Despite many requests in the past, asking the Trustees at OUCH(UK) to have links to ClusterBusters. They remained reluctant to do so.

This topic is under general category, & as such can be read by anyone.

So I now make my request publicly again to the Trustees at OUCH(UK).

Will you place a link to ClusterBusters on the UK site, so sufferers can be fully aware of all the treatments available to them?

Regards.

CArl...(former member)

[Mad6string]

I am so glad to see a doctor actually take the time to listen to us, understand our pain, and maybe try to make a difference for present and future clusterheads.

I mean, if Dr. House can give a kid a mushie...

Mad6string

[Guest]

He is also quoted as saying, in reference to psychedelic treatments, that medical science should be ashamed of themselves if the best they can offer is a 60 year old drug that causes hallucinations.

Bobw

Hello Bob,

IMHO it's Goadsby who should be ashamed of himself.

I can remember attending a conference in London many years ago, when the great Proff Goadsby said that he would find a cure for CH inside of 5 years.

Well where still all waiting, & he still refuses to  recognise the amazing results many are having with this 60 year old drug.

I also have my doubts as to the morality of this man,he seems no longer guided by care for the community,

but by profits for those who fund his research.

Proff GODsby is well aware of the very real problems within our National Health Service (NHS)

Hospital closures. Job losses. Lack of specialist baby care units. etc.

yet he still stands aside, & watches as hundreds of thousands of pounds worth of NHS funds are wasted

on drugs, which, for many do not work, & cause countless other health problems.

I am just no longer convinced that he cannot be seen to be advocating the use of hallucinogens, given the amount of published

documentation there is.

He is well aware of many Chronic CH sufferers, who have spent all avenues on conventional medication.

He is also well aware of those same sufferers, who for many years, are now living a PF life, thanks to a 60 year old drug.

His reasons for not wanting to be involved with this treatment IMHO, are now wearing a little thin.

If anyone could convince our government, to at least look into this treatment, then he could.

I do not accept his reasons for not wanting to do so. I am in no doubt that his pocket out weighs his morality.

A few years ago, Proff Goadsby said.

"Psilocybin may well have some effect on CH, but as with most treatments, it

will not last"

CArl...

[johnny]

He is also quoted as saying, in reference to psychedelic treatments, that medical science should be ashamed of themselves if the best they can offer is a 60 year old drug that causes hallucinations.

Bobw

Hello Bob,

IMHO it's Goadsby who should be ashamed of himself.

I can remember attending a conference in London many years ago, when the great Proff Goadsby said that he would find a cure for CH inside of 5 years.

Well where still all waiting, & he still refuses to  recognise the amazing results many are having with this 60 year old drug.

I also have my doubts as to the morality of this man,he seems no longer guided by care for the community,

but by profits for those who fund his research.

Proff GODsby is well aware of the very real problems within our National Health Service (NHS)

Hospital closures. Job losses. Lack of specialist baby care units. etc.

yet he still stands aside, & watches as hundreds of thousands of pounds worth of NHS funds are wasted

on drugs, which, for many do not work, & cause countless other health problems.

I am just no longer convinced that he cannot be seen to be advocating the use of hallucinogens, given the amount of published

documentation there is.

He is well aware of many Chronic CH sufferers, who have spent all avenues on conventional medication.

He is also well aware of those same sufferers, who for many years, are now living a PF life, thanks to a 60 year old drug.

His reasons for not wanting to be involved with this treatment IMHO, are now wearing a little thin.

If anyone could convince our government, to at least look into this treatment, then he could.

I do not accept his reasons for not wanting to do so. I am in no doubt that his pocket out weighs his morality.

A few years ago, Proff Goadsby said.

"Psilocybin may well have some effect on CH, but as with most treatments, it

will not last"

CArl...

well thats ok. we're gaining alot of steam with this and 1 man cant keep everyone in the dark forever

[Guest]

I'm just wondering if any of you have mentioned the clusterbuster methods to your doctors and what their reactions were?

First and foremost, you are not doing anyone any good by not telling your doctor what you are treating yourself with, weather it be medical marijuana or mushrooms.

To answer your question, yes. All of them.I am anymore in their face about it. They all have expressed their appreciation for my honesty, and have included it in their record. All have recommended against it,while under conventional treatment. None have denied my right to treat myself, or have withheld any type of conventional treatment because of it. Lucky I guess.

All have suggested that detoxing from conventional treatments is essential before busting.

[TakinitEZ]

I'm surprised to hear that anyone's doctor is on board, officially. Doctors assume considerable legal, financial, and patient risk when suggesting any medication off standard formulary or off label. Malpractice or malfeasance can be devastating to their career. That's why many won't even talk about it other than to listen. I believe that all docs are genuinely interested in helping the CH patient as best they can, which is clear in their willingness to prescribe all known and clinically tested medicines to their maximum safe dosages. Many may even "look the other way" regarding busting. The fact is, though, that individual doctors don't develop new drugs, pharma does. Doctors are limited to what is available for a particular indication such as CH. Unfortunately, there are no drugs currently available that are specific to CH.

That isn't to say that it's not helpful to educate them about alternative methods of achieving relief. They can be very influential in initiating new studies and advising pharma on new opportunities.

Kick-backs by pharma, as well as wining and dining, are highly illegal today and can result in a pharma company receiving very heavy fines and potentially having to pull drug from the market. There are both FDA and SEC issues here. In some drug companies, where such things have even slightly come to surface, company-wide corporate integrity programs must be established in conjunction with paying massive fines.

As far as pharma's interest in CH, you have to consider their mission. They are public companies that are charged with providing return on investment for the stockholders. They care very much about patient safety, but rarely invest millions or hundreds of millions of stockholder equity to address a market that can't return that investment as profit. CH is .1% of the population, which is a very small market.

The drugs we are evaluating here are largely considered class I drugs, which means that the cost of clinical studies would be massive due to safety concerns. If a company did produce such a drug for CH, they would need to recover those costs, which would drive pricing through the roof. It's unlikely insurance companies would assume that cost. It just doesn't appear to be a good business investment. Unfortunately, et the end of the day, that's what it comes down to.

I do believe that some companies are beginning to show an interest in CH and many are evaluating existing medicines for this new indication (indication is what they are targeting with the drug). Taking a drug that's proven for safety and efficacy and running a couple of trials to prove efficacy for another indication is a much less costly proposition and makes sense in terms of boosting sales potential for the drug.

-T

[Purple]

Just read this thread and thought I'd bump it up a little as I'm still wondering myself if I should tell my neuro at all I have been using RC seeds. I'm seeing her in a month.

[Tuckerman48]

Nice Bump Purple.

I tried to talk to my first doc about it, and he dismissed it completely, and wrote out the scripts for all the meds.  About $400 to have filled with insurance, then $80 per shot during the cycle.  The meds made the cycle longer, and more painful.  Luckily, I was able to bust the following cycle, and wanted to go into his office and slam him up against a wall, and make him tell others of this treatment.  It is not humane to keep this knowledge suppressed.  But then I thought better, and found another doc, that was at least familiar with this method.

In fact, he was the one that convinced Odin to join the board  this past Sat, and indirectly advocated this treatment.  I like my new doc.

I have a ton of respect for doctors that truly want to help people, and not just make money off pharmaceuticals.

If you do bring it up, bring in a ton of info with you, possibly play him the Nat Geo Clip with Dan and LeeAnn.  That was pretty powerful stuff.

My 2 cents.

[Ajax]

My husband's neurologist is a gift from God.  He is on board and has attended Cluster Buster conferences.  He is very professional and can see many benefits to conventional medications for some sufferers, but is willing to discuss and weigh in on alternative methods as well.  The difference in the way my husband is able to talk about these headaches and see light at the end of the tunnel after meeting with him is just astonishing.  I just posted a link under "General" to a news story on alternative methods for cluster headaches - being covered this evening on the Boston Channel - ABC - at 11pm tonight!

My husband was tapering off Pred and was down to 10mg.  We were going to wait 5 days before treating with Vitamin M, and my husband was very concerned, because he was having some shadows and his eye is a "tell" that the bout is not yet gone.  The neurologist recommended starting the Vitamin M on the last day of the 10mg of Pred and then doing it again in another 5 days.  I suggested that my husband needed to be completely Pred free before busting, but the doctor explained that that has not been scientifically proven.

My husband followed his advice (over mine?  ha!) and it has worked very well.  He is off all medication.  Has busted twice in a week.  Our goal is to wait about a month, unless symptoms appear for the next bust.  Until, eventually, he can return to his every-3-month cycle.

http://www.thebostonchannel.com/video/30416465/detail.html

Tina 

[MoxieGirl]

I told my GP during my visit on Monday.

She asked what I was taking now that I'm off Topiramate, and if I was taking the D3 instead. I asked her to not put any of this into my notes, and she lifted her hands away from the keyboard in a gesture that said 'no problem'. Then I explained about the psilocybin and LSA.

Her advice, be careful.

But, this is also the doctor that was fine with me drinking several shots of vodka to stop a migraine. Also, she has a friend with clusters, so appreciates how bad they really are perhaps in a way not many doctors do.