Do you/should I tell my doctor about busting?

[HeadacheRelief]

Hello,

I was wondering if folks here tell their doctors about their busting and how well that goes.  I am reluctant to for obvious reasons. 

I like my primary care physician A LOT.  Over the years we have established a patient-physician relationship where I trust her and can tell her pretty much anything.  Years ago I let her know about topamax for prophylactic treatment of migraines and she prescribed that for me which was a huge help.  [i don't take it any longer since my headaches are basically gone since busting regularly.] 

When I saw her recently for an unrelated medical issue the usual questions and review of the meds I am on came up and I let her know I was no longer taking Pristiq, still taking Maxalt but very rarely and that I was finding great success with more natural treatments, i.e., the vitamin D regimen.  I didn't go into Vitamin M. 

I think she would be receptive, though with a healthy skepticism, to busting but am paranoid about having that info in my patient chart.  I know that legally this info is supposed to be confidential but I work in the medical field and know what can happen in spite of this. 

I had thought about giving her the link to this web site.  What do you think? 

[diamondmaker]

I would approach it as... you have heard about this (but you haven't tried it though), give some information and ask what they think? Their reactions and advise will tell you all you need to know about sharing your experiences.

[jackieblue]

I told my neuro in NYC about seeds, since I was in the study a few years back. She rolled her eyes and told me she never heard of it. I told her the study was published and she sarcastically asked me what journal it was in.  She knew nothing about the Bromo study going on in Germany but told me the Italians are really up on their meds. This neuro is located at one of the most respected headache centers in the country. I understand that they cannot support the LSA approach, but to play dumb was insulting. She handed me a script for Imitrex anvd some other meds, which I chucked in the garbage on the way out. I also told her that I have been a patient there for 15 years (she was new) and may need a note down the road for a few days off from my teaching job if sleep deprivation becomes a problem. I have missed only 12 days of work due to CH in 25 years and have 200 sicks days. She said she would never give me a note for that reason. The only reason I will ever go there once a year is for my O2 script. I have resolved to never ingest another Med. I don't know if the seed issue gave her an attitude or the fact that I said I have been on everything and was not interested in trying lithium! I say avoid the seed or M conversation because it is competition for them and they will not be interested. Get your O2, your vitamins, and natural remedy of choice and keep the conversation here. Just my thoughts from experience.

[CHfather]

Arrrrgh.  That neuro story is so typical.  Makes my blood boil.

Was it Sewell's study you were involved with (where people sent in seeds they had used to be tested)?  This one: http://www.maps.org/research/sewell_2008_aha_lsa_poster.pdf

[HeadacheRelief]

Wow Jackieblue.  Not encouraging and I live in the deep south where, I am sure, medicine is behind NYC by a good decade.  Plus, what I bust with is not as easy to talk about with, if you know what I mean.

I, too, have decided not to take any conventional pharmaceuticals and actually feel better than I have in a long time.  It's unfortunate that conventional medicine is narrow minded and not open to a method that so clearly works extremely well for a lot of folks.  I guess if we are not supporting the big-name pharmaceutical companies, we are noncompliant rebels, God forbid.

Thanks!

[davidj]

I told my primary and he said "cool" is it working? Since then he always asks about my busting and loves hearing about Bromo etc. When I need to renew my 02 script he does it by phone. I consider myself very lucky.

[Bejeeber]

I have missed only 12 days of work due to CH in 25 years and have 200 sicks days. She said she would never give me a note for that reason.

Certain terms for your neuro such as "a-hole" and "jerk" immediately come to mind.  :-?

[jackieblue]

She was both of those. She was so condescending, treating me like a child fibbing about  a " tummy ache" so I could miss school. When she tested my knee reflexes and had me walk two feet while she watched and told me what a good job I was doing, I almost walked out. I needed the 02 so I played along. Don't go to St. Luke's if you live near NYC.  There are better places. I need to find one in Jersey.

[CHfather]

I need to find one in Jersey. 

The organization OUCH (now defunct, at least in the US) asked people with CH to recommend doctors. Here's the list for NJ:

Bloomfield:

Dr. Joseph A. Carluccio

Edison:

Dr. Michael Merkin

Edison Neurologic Associates

Emerson:

Dr. William L. Cantor (ENT)

Kearny:

Dr. Frederick Weisbrot

Somers Point:

Dr. Kevin E. Hunter

Coastal Physicians & Surgeons

Stafford:

Dr. Loretta L. Mueller

UMDNJ - University Headache Center

Summit:

Dr. Melvin Paul Vigman

Vigman & Pollock

Turnersville:

Dr. Ramon Manon-Espaillat

Neurology & Neurophysiology Associates of NJ

[jackieblue]

Thank you so much! The Edison neuro is right around the corner.  Will give him a try.