Clinical Centers of Excellence: Audio interviews (Headache facilities)

[bridgie]

Access to interviews from directors of headache facilities in the US. UCSF, Diamond, Thomas Jefferson, Michigan etc.  They each descibe their direction and goals.


http://community.modernmedicine.com/_CCE-Headache-University-of-California-San-Francisco-Headache-Center/audio/439784/33379.html

[Janet]

Thanks for posting this link. Dr Goadsby is certainly the leading headache expert.  I have never heard of IV aspirin for treating over use of headache medicine. I will have to look this up. Sounds facinating.

I would love to know more about the medical imaging. I wonder what information it shows. I have read some of Goadsby's papers but I haven't seen much on the imaging.  I always thought, if I had some sort of test that showed how much electricity and muscle activity was going on in my head, the doctors would have been astounded how much pain I was in! As it is now, they have to take your word for it.

About a year ago, I went to a medical center pain clinic and they offered to enroll me in a study where they inserted an occipital nerve stimulator. Dr Goadsby, in the interview, had mentioned these stimulators, similar to the ones they use for back pain.  I declined since I had already participated in 2 other type of headache studies and I had enough.  Frequently manufacturers conduct these studies around the country and pay you for it. This might be a pain solution to someone with poor or no insurance.

Janet

[bridgie]

Hi Janet (and others)~
If you haven't already, scroll down on this site and on the right side are links to interviews with other institutions directors besides the interview w/Goadsby at UCSF. About the aspirin thing. I spoke with Dr Goadsby's nurse last week and she said they are still awaiting an approval to use the aspirin treatment. I'm hoping they hurry up as I'm scheduled to have my BAHA surgery in late June. We didn't want to take me off the meds I'm currently using plus I don't have much of a choice (see my reaction to Imitrex) before I have the surgery. Anyway one way or other I need to eventually get off the meds so Dr Goadsby can admit me for the another type of medical treatment designed to re-set the button so to speak and and stop the headache cycle. I don't remember the name of the medication. Its not for de-toxing like the aspirin therapy but an actual target to stop the head pain. The nurse said afterwards I may or may not need additional meds. Anyway, it is all very interesting and hopefully worth a try. 

[Janet]

If you think of the medication, let me know. Sounds promising.

I didn't notice the other speakers but I will get back to the site and listen. These headaches are so complex, especially when you throw in a craniotomy.  It is like peeling an onion to find your way to the cause. It seems like you have to take away all the known causes (rebound headache) before you can sort out the underlying cause. 

Keep us posted and good luck with the BAHA
Janet

[GeorgiaMei]

Hi bridgie and Janet.  Are you both from the Bay Area?  I live around Berkeley and saw Dr. Goadsby a month or so ago. Thanks so much for the link to his interview!   He also suggested inpatient detox and with IV aspirin for my headaches (mine are daily with multiple migraines/week since surgery).  Neither my neurologist, nor other pain experts I have talked with, have found any medical precidence for IV aspirin, from the literature.  And I couldn't find any evidence for it myself.  According to the interview, it sounds like there may be some UK studies--Have you found any articles related to the efficacy of IV aspirin treatment?  I found Dr. Goadsby pretty disrespectful and dismissive and decided to pursue other treatments, but am curious what you all have thought.  I had a hard time discerning if he had issues with narcotic treatment (i.e. he doesn't believe there are valid reasons for treatment) or whether he didn't feel they were useful for my pain.  I'd love to hear about your experiences and whether either of you have undergone his treatment.  Thanks!  And feel better, Karen

[Janet]

Karen,

I live in Seattle and go to Dr Sheena Aurora at Swedish Hospital Medical Center.  She is a neurologist that heads the headache clinic.  She told me to read some of Goadsby's publications regarding a specific type of headache at my first appt.  I have never met him, only read his publications. Dr Aurora has done a lot of research of which I have participated in 2 studies. (Pubmed is a goverment site where you can read any study that has any type of public funding.)  She has a number of AN patients and explained from the beginning that AN patients are difficult to treat.  She has been extremely helpful and encouraging. She seems to know the limitations of treating the symptoms and had encouraged me to keep trying to find answers. She has shown much interest in what works or doesn't work for me. 

It sounds like Dr Goadsby is treating patients off of anti-inflammatories with IV aspirin or off of opiate addiction with Narcan? I can't find any specific literature on what his program is. It sounds very interesting. There is a procedure that binds the receptors called a Narcan Wash to treat addiction.  Maybe this is what he is doing to treat rebound?

At some point there has to be an acknowledgment of an underlying cause and a method to treat the underlying cause.  I am wondering if Dr. Goadsby is treating the rebound first to help make the cause clearer?  What does he suspect the cause to be and how will he treat it? 

Janet