Hi Radar-

I see a neurologist because my primary care doc had done all he could and headaches weren't better.  I do have insurance though so that makes things easier. My current neuro is great and really gets it.  Not all neuros understand ch though.  This is my second one, as I had to 'fire' my first one for being arrogant and lacking the understanding or interest in learning more about CH.   

If I didn't have insurance and couldn't get to a neuro, I probably could have worked with my GP and shared the information learned here and he most likely would have been very open to trying different treatments. 

In your situation,  I would do tons of research ( you can find great information here if you look on the left at the links)  on treatments and determine based on your pain level and current treatment whether what your GP is doing is working.  You may find something here on the boards through reading all the links , that you can educate your current doctor about. 

It sounds like that gp ( at the college) is certainly willing to work with you-  some doctors are open to reading articles about treatment that patients bring them and are willing to try different treatment protocols.  You may just want to print off some of the information and take it to her.

What medication or treatment are you using now or have you used in the past?   We can steer you in the right direction and help you facilitate a conversation with your current doctor  to potentially get you on the right track if what you are using isn't helping. 

Others will be along soon to reply and I'm sure you'll some answers and varying opinions that you can mull over. 

Kelly

Yay! I finally found my military hospital records...of course, it's all gibberish to me...HA- it just keeps saying "migraine"...  I might try to see Doc today- I was up all night with bad pain behind right eye again- doesn't feel like cluster, but not like migraine either....craptastic! 
(and so far she seems to be up on all the latest research. )

You've already gotten some great advice, but my thoughts are that it totally depends upon the neuro.  Unless you have a reference from someone and KNOW the neuro knows a lot about CH, I see no advantage to seeing one.  We saw most of the neuros that we could get to that were listed on the OUCH-US website.  They know how to treat "regular" episodic clusters, so they were worthless to us (Gary is chronic and med-resistant).  He's at a neuro at a headache center now and the guy has WAY more ideas.  But depending upon your CH and your area, just "any" neuro may or may not be worth that gazillion dollars.  It's like roulette, in my opinion.  Work on finding one that has experience!

Laurie

UnderTheRadar wrote on Dec 1^st, 2008 at 3:08am:



If the headaches stay fairly consistent and you are comfortable with your current doc and doc is understanding of CH then that in my opinion is worth 10 neurologists.
If your school has a med program then she has access to more info and knowledge than many independent neuros.
Comfort and understanding is worth a lot. There is nothing to say that treatments would be any better with a neurologist.

Long ago I saw many neuros before one finally diagnosed me.

On the toddler I would suggest waiting.

Quote:


lewiston id. man what a beautiful place.

my family doctor suggested that i may have ch. back in 97. this is the
only doctor i have had since i was born. i started to go see him for this ailment back in 86. back then you didn't have the internet let alone this board to research this topic. the great thing about having him all those years is that he knew that my pain was  real and information was very limited. man how things have changed since then. i'm sure that nowadays i could go and see him and tell him about ouch and this message board i think he would find it interesting and challanging to treat a case of clusterheadaches. but last winter i was scared to drive and since i wasn't driving money was tight.

Radar, no one here really cares if you go to the doc or not. They are trying to express the need for you to know if you have a tumor, aneurism, or the like? You can not just meander through this site without finding people who care about you and the situation you are in. We all here care about you and your wellbeing! It is in your best interest to verify just what is happening with your HA pain so as to best help you cope with it.

Best, Rolo….

Thanks, guys...y'all are wonderful...so far, she has gone out of her way to try to figure out ways to help me, and she is a fountain of compassion and caring- which goes a long, long way!
I just wasn't sure if there was some magical, special, mondo-cool-neurologist-only testing that I could get, hehe- but I just got back from my doc and although she'd LIKE for me to get another CT just to rule things out (my last one was 3 years ago)with my history she didn't think it would be terribly informative.  She does, however, think that sleep apnea could be contributing to things (it does cause headaches) but that kind of testing gets REALLY expensive, so she's trying me out now on amitryptaline and flonase, along with my adderall.
BTW, we've tried O2 several times, correctly, and it barely works at all- then the pain comes right back. 

i agree with that, in my short experience i found that the method and amount of oxygen was a huge factor in how well it worked. 15lpm and pure oxygen made a world of difference.