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

Ron,

Please share my optimism for PF success to Michael

-Gregg in Las Vegas

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

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

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

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

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 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.

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

Ron,

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

Coach Bill

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

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


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

Have a look at   Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ; for interviews etc.

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

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.