Hi,

It's been a while. Recently, our wonderful friend Bejeeber wrote to Dr. Goadsby telling him of Michael's plight (still seriously chronic, psychedelics not working, only relief coming from daily, massive doses of narcotics) and asking if perhaps Michael could be included in some of his neuro-stimulation trials. The doctor wrote directly back saying that he'd be happy to see Michael to discuss the possibilities. We of course accepted and after a few weeks wait flew to S.F. for our appointment. We were ushered into an exam room by young lady neuro who we thought was one of probably several working under Dr. G. We didn't know at this point whether or not we would even see him.

She spent over an hour taking an incredibly thorough history and giving Michael a neurological exam. When she finished, she left the room telling us she would return shortly - with Dr. G. She and he returned and the four of us sat in a circle with him directing his (heavily English-accented) questions about Michael to the lady who had taken his history and who he was clearly mentoring.

I've been around some pretty smart guys in my 65 years but I don't think I've ever been around anyone with that powerful an intellect. Really intimidating. I doubt that I spoke 3 sentences all the time that we were there. What he seemed most interested in was the onset of Mike's HA's when he was 12; how Mike experienced his HA's; what he had tried, in what dosages, over what lengths of time and what worked or didn't. He was remarkably un-interested in psychedelics and ClusterBusters (don't quite know why, yet). What he really needed - that we hadn't supplied - was dosages, lengths of time at what dosages and why discontinued. 

So we have to make a return visit. For Dr. G., the first most important thing is to get an accurate diagnosis. We're confident that he'll be able to do that once we've supplied him with the info he needs. That confidence that he instills in his patients, that he'll be able to help them even if no one else has, is Dr. G.'s greatest asset. We left his office knowing that Mike's going to be okay. Dr. Goadsby's a consultant. He guides other doctors in the treatment of their patients. That's what he's going to do for Michael's doctor who gathered and sent the info Dr. G. needed just within the last couple of days.

We don't know what's going to happen next or when. Pretty sure we're going to revisit several of the meds we've tried. Michael has to get off the methadone. Dr. G. also asked for a new MRI with instructions to the radiologist to pay particular attention to Mike's pituitary gland(?).

I'll update this thread as things happen. I'd be very interested in comparing notes with other CH'ers who've been patients of Dr. Goadsby.

Ron

This sounds like one huge step forward in his treatment.

I just wish we could clone him so that more people could get this kind of experience instead of some of the stories that people post here.

Ron,

Please share my optimism for PF success to Michael ;)

-Gregg in Las Vegas

Ron that's outstanding news worthy of a beer up at Mcilhenys. Any day better then another this week for an Exponentially Hoppiness and a burger???

Joe

Ummm.... good idea! Sure. We haven't seen you guys for a long time. Depending on what time you'd like to go, we could meet you any day. What's good for you?

Ron

Ron,

Thank you for the encouraging news!  I'm still praying for Michael and that you will find the right treatment for him.  I've just been very bad about communicating to see how he is doing.

I think the reason Dr Goadsby is wanting to take a look at the pituitary is CH can be a secondary condition caused by a pituitary tumor or other issue.  That may also give an avenue of treatment.  Please keep us posted!

Jerry

bonkers wrote on Jan 20^th, 2012 at 7:52pm:

Dr. G. also asked for a new MRI with instructions to the radiologist to pay particular attention to Mike's pituitary gland(?). I'll update this thread as things happen. I'd be very interested in comparing notes with other CH'ers who've been patients of Dr. Goadsby. Ron

Hi Ron,
I have read about Michael's fight (and yours) over the last couple years. I am glad Matt wrote Prof G., and that you got in no problem! I am currently a patient of Goadsby, and would be glad to speak to you if you wish.

I also had to get a pituitary MRI (after I already had a couple other MRIs) to rule out the pituitary as a primary cause of the headaches. It is a part of Prof G's diagnosis, to make sure the CH is a primary-type headache.

Val

Quote:

I've been around some pretty smart guys in my 65 years but I don't think I've ever been around anyone with that powerful an intellect.

Isn't he though?   You could NOT be in better hands.  I have to disagree with you on one thing though.  Dr. Goadsby isn't intimidating at all.  He has a sense of humor, and is very down to earth and sensitive/empathetic  to our cause.

Hi Linda,

I get what you mean. I didn't intend to imply that I found him cold or distant. I really enjoyed his humor and the warmth in his presence. I sensed a huge heart. The intimidation thing isn't something that I think he tries to do at all and I genuinely liked the guy. It's just that when he's doing his thing, his doctor/scientist/professor/genius thing that I'm in awe. It's like that for me watching any world-class expert in action.

Ron

bonkers wrote on Jan 23^rd, 2012 at 6:08am:

It's just that when he's doing his thing, his doctor/scientist/professor/genius thing that I'm in awe. It's like that for me watching any world-class expert in action. Ron

Ron...i can relate big time,as that happens to me every time i watch the guys flipping the burgers @ in and out  :D :D :D :D :D.....Lenny

I wonder why he was not interested in clusterbuster? Could be his past drug use? maybe didnt want to go in that direction. Maybe there is no money in the treatment? Idk, but im dissapointed that he would brush aside something that works for over 75% of the people who use that method.

Coach Bill

coach_bill wrote on Jan 23^rd, 2012 at 12:27pm:

I wonder why he was not interested in clusterbuster? Could be his past drug use? maybe didnt want to go in that direction. Maybe there is no money in the treatment? Idk, but im dissapointed that he would brush aside something that works for over 75% of the people who use that method. Coach Bill

I have found that many medical providers who we seek treatment from re: CH's often do not take time to listen with an open mind about treatments such as energy drinks, anti-inflammatory regimen, busting nor high flow o2.  I suspect the reason is as Coach Bill stated..."no $ in the treatment."

EDIT TO ADD
Despite "75%" success for those who bust, "70%+" success for those who use the anti-inflammatory vitamin regimen and my guess is 90%+ success for those who use high flow o2...because there's not clinical trials approved by the so called "Gold standard approval" for these treatments, it is not medically recognized effective resulting in ignorant and/or timid neurological community.

I'm sure liability has much to do with it too.

What we need is $ for research and development! 

Until that hopeful time arrives...we are, as we have been, on our own to self advocate and do whatever we can as we know best! ;)

-Gregg in Las Vegas

I suspect that it's more around them doing evidence based medicine where the evidence is based on appropriate clinical trials having been completed, which precludes many things that we think work well as they have not been through the clinical trial process.

Quote:

I wonder why he was not interested in clusterbuster?

Could it be he doesn't want to lose his medical license?  Goadsby talked to several of us at the last convention (in a small group) about busting.  Off the record of course and he said he would be very supportive of this treatment were it legal.  When my own GP asked me what was new in the field of CH research and I told him of cluster busters, he immediately threw his hands up for me to stop talking.   He smiled, but I understood he couldn't discuss this with me even though he wanted too.


Quote:

It's just that when he's doing his thing, his doctor/scientist/professor/genius thing that I'm in awe. It's like that for me watching any world-class expert in action.

   I understand Ron and I agree with you on that.  Goadsby is a force of nature and one can't help being intimidated by his presence.  [smiley=bow.gif]

I do understand the legal issues. And i wont expect to find it in the book of home remedies anytime soon.
I know it is not the "cure" Mainly because i believe there is NO CURE. Its a condition that will remain in you. You can try to control it, prevent it, or out smart it, but its still there.

I will only state the facts in accord to myself, I know that i could speak for others but i wont. It has been 4 years since I've been in that madness of a cycle. I used to be beaten into submission every 2 years, I have gotten a few very mild "solo" shots but for the best part of those 4 years i have been pain and shadow free. And in those 4 years i have not taken 1 abortive, or prevent RX med. Not 1.

That was my goal.... To find a way to get off the meds and beat down a cluster without the use of any triptans. I just couldn't  believe i could not get rid of those damn things without shooting 6mg of imetrex into my body. Then i met Bob Wold and everything changed. I know it wont save all, but it has me.

I just think that it's a major punch in the stomach to us busters, and just a skip toss away from being back in the Stone age. Thanks for reading.

Never accept defeat,
Coach Bill

Hi Coach,

We've found that episodics respond far better to busting than chronics. Many, many people that I know share your experience. They'll bust 1-3 times and lose the HA's - sometimes for years. But for most they seem to eventually return. The more serious episodics, those that get hit several times/day, 7 days/week for 2-3 months at the same time every year; well, they have to try 2 or 3 times and maintenance dose 1-2 times/year. Theirs also return, at full-force, after a couple of years.

Chronics like my son, depending on the severity of their HA's, need to bust every week. The psychedelics work, at least initially, but the lengths of their PF time decline over time until for some  - like Michael - they don't work at all.

Ron

Ron,

Im sorry to hear that. I hope your son finds releif soon. If i can help let me know.

Coach Bill

bonkers!...good to hear from you again...there's a whole bunch of folks here been praying and hoping for Michael's relief...and peace for him and your family.

...and Bejeeber!...good on ya...THANK YOU!

Some other thoughts:

While I have no doubts that the Health Care industry is inordinately "profit" based...and sadly so....as my own experience with several "conditions" at a ridiculous cost of $150k demonstrates...have never felt it was "all of 'em".

I'm thinking Mike has it right. Physicians/scientists are tied to demonstrated efficacy. It's the training...it's the culture....shoot, it's even the "law". For ch...there is SO little research it is to weep. What we get is usually the result of much more prevalent migraine research. For now...it's what we got...someday...maybe better.

In my own state (WA)...there is recent legislation that is scaring the crap out of medical providers. "Pain" medication has become a "legislative priority"...politics over medical practice. Get on the wrong side of that...lose your livlihood and career. In that circumstance...I'd be damn careful too.....

...and coach bill....whatever you think...I do "get it" re clusterbusters. A whole lot of folks here do too. Every success, for a fellow clusterhead...I do the happy dance. WHATEVER works! Some of us...for various reasons can't go that route....we're all different...we do what ever needs to be done...someday it will be a "known". Til then...we just gotta hang on...............

Best,

Jon

Jon,

As much as it pains me to say this.. YOUR RIGHT!! And i am sorry to all i may have offended by seeming holy-er than tho attitude about having to use RX meds.These things are god awful enough to make a grown man cry on the floor like an 8 year old boy.

Even i have taken the drugs in the past, And if the busting ever stopped working... well, lets just say i would do whatever i had to do to get them to stop, until I found that next silver bullet.

It just bothers me that something i believe in so wholeheartedly gets brushed aside so a GP can "play with the medications" till we get it right, or come off with a $200 script for "something he would like to try".


Lets get outta here in 1 piece..
Coach Bill

coach_bill,

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Ron

bonkers wrote on Jan 20^th, 2012 at 7:52pm:

Hi, It's been a while. Recently, our wonderful friend Bejeeber wrote to Dr. Goadsby telling him of Michael's plight (still seriously chronic, psychedelics not working, only relief coming from daily, massive doses of narcotics) and asking if perhaps Michael could be included in some of his neuro-stimulation trials. The doctor wrote directly back saying that he'd be happy to see Michael to discuss the possibilities. We of course accepted and after a few weeks wait flew to S.F. for our appointment. We were ushered into an exam room by young lady neuro who we thought was one of probably several working under Dr. G. We didn't know at this point whether or not we would even see him. She spent over an hour taking an incredibly thorough history and giving Michael a neurological exam. When she finished, she left the room telling us she would return shortly - with Dr. G. She and he returned and the four of us sat in a circle with him directing his (heavily English-accented) questions about Michael to the lady who had taken his history and who he was clearly mentoring. I've been around some pretty smart guys in my 65 years but I don't think I've ever been around anyone with that powerful an intellect. Really intimidating. I doubt that I spoke 3 sentences all the time that we were there. What he seemed most interested in was the onset of Mike's HA's when he was 12; how Mike experienced his HA's; what he had tried, in what dosages, over what lengths of time and what worked or didn't. He was remarkably un-interested in psychedelics and ClusterBusters (don't quite know why, yet). What he really needed - that we hadn't supplied - was dosages, lengths of time at what dosages and why discontinued.  So we have to make a return visit. For Dr. G., the first most important thing is to get an accurate diagnosis. We're confident that he'll be able to do that once we've supplied him with the info he needs. That confidence that he instills in his patients, that he'll be able to help them even if no one else has, is Dr. G.'s greatest asset. We left his office knowing that Mike's going to be okay. Dr. Goadsby's a consultant. He guides other doctors in the treatment of their patients. That's what he's going to do for Michael's doctor who gathered and sent the info Dr. G. needed just within the last couple of days. We don't know what's going to happen next or when. Pretty sure we're going to revisit several of the meds we've tried. Michael has to get off the methadone. Dr. G. also asked for a new MRI with instructions to the radiologist to pay particular attention to Mike's pituitary gland(?). I'll update this thread as things happen. I'd be very interested in comparing notes with other CH'ers who've been patients of Dr. Goadsby. Ron

I have met dr. Goadsby in London. A very knowledgeable Dr. on cluster headaches.

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Especially about CH.

Coach Bill,

I talked with Dr Goadsby at length at eh convention, and one of the issues we spoke about was busting and the possible reasons it works.  He is VERY interested in BOL and has followed what he can on it.  He cannot give any positive input on the use of any illegal substances, so he doesn't even discuss tier use.  To do so would give tacit approval and would jeopardize  his practice.  He is by no means insensitive to our needs or to the terrible side effects of some of the pharma products out there, but his hands are tied.

Jerry

Thanks, Globi.

Hi Jerry,

Do you remember anything he said? I can't imagine that your memories could in any way jeopardize Dr. Goadsby's practice, but if you can, I'll understand and not press you on it.

Thanks,

Ron

I dunno, Marc. They're memories, not recorded conversations. In a phone call/PM, no one would benefit from that info besides me. If Jerry feels that recalling a conversation with Dr. G. violates a confidentiality, he won't tell me. Neither will he call or PM me. Like I said, no pressure.

Marc,

I can't argue your point; I agree with it. If the conversation was private and intended to be confidential (which isn't made clear), propriety wouldn't allow that it be shared. If it was a public discussion but between just a few people, unless it was clearly stated beforehand (e.g., "please don't share this with anyone, but..."), I don't see the harm.

Ron

 

Ron and Marc,

You are both right.  However, in this case what was said was in private and I prefer to keep it that way.  Ron, I'll email you part of it, asking that you also hold it private.  It isn't earth shattering, but I do understand where the Dr is coming from.

jc

Ron, would you PM me your Email?  thanks

I apologize; didn't mean to pry. If it's in any way private, I'd rather not know.

Thanks,

Ron