haha...Ok, before you start lecturing me, let me 'essplain:
  I have no insurance right now (and when I get on fiance's, this will surely be a "pre-existing condition")  but my college health center doc is awesome (she's the one who figured out it was CH in the first place)  and she's been trying everything to help me short of throwing a kitchen sink at me (well, who knows?)
  Anyway, when this happened 3 years ago, with military medical insurance, they did a bunch of bloodwork, scans, MRI, you name it, found nothing "abnormal," called it a migraine and threw some pills at me.  :D
 Now that my cycle "seems" to be over and all I'm left with is daily migraines, what could a neurologist do for me that would justify the eleventy-billion zambolis I'll have to shell out?  I really do want to know if there's something I'm missing.  But seriously, I called the reference my doc gave me, and they wanted $400 paid BEFORE they would even make an APPOINTMENT  for a consult!!!!!   :o
  If I get on insurance at school now, then in 12 months I will be covered for pre-existing conditions.  Can I wait?  Or do I sell my toddler in Mexico?  

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

Get your records from the military and give to your school doc to check (just as a precaution).

I got disgusted with neuro's after firing about a dozen of them and my GP and I worked things for a long time till he decided he was over his head and snuck a neuro in on me while I was in the hospital and the neuro was a great one and we've been together ever since.

I feel for you not having insurance. I've fought these things without insurance for most of the time since I've had them and it can get expensive. Get covered as soon as you can and hopefully you can wait out the pre-exisiting period before another cycle hits.

In the meantime, do what Joe said and read read read and educate your present doc.

Hugs BD

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!  :D
(and so far she seems to be up on all the latest research. :) )

for me the neurologist was because my gp would not perscribe me more than a few maxalt. then i went to an allergist that said it was crazy that i was getting a "migrane" every day. however i too have insurance. there seem to be a good amount of helpful insights on here. for me oxygen has really been a wonder, i believe there are several posts on how to get it from different sources. i also went through several years trying to fight it without insurance and not really knowing what was going on. i wish i would have had the internet back then.

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

never once have i been to a nuero. i've never been diognosed with ch either. 2 cycles ago my family doctor suggested an mri and nothing turned up. after that the cycle was over and and pretended that it  never happened. that was with insurance. last time around my insurance went up to $90 a week. it was cheaper to pay out of pocket for my wifes insolin so i dropped it. a few months later i started my cycle. they're spread out over a few years. so had to figure this out without doctors. my attacks were extreme and very frequent. i couldn't sleep so i spent all my time on this boar and the clusterbuster website. never took any meds. i had $25 rapped up in getting my o2 tank filled and maybe $60 in altornative treatments. i'm not saying it's the best way but it was easier than driving ack and forth to columbus several times to a speculation on on condition and then paying hundreds out of pocket for visits, refurals, meds and gas.

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

my college health center doc is awesome (she's the one who figured out it was CH in the first place)  and she's been trying everything to help me short of throwing a kitchen sink at me (well, who knows?)   If I get on insurance at school now, then in 12 months I will be covered for pre-existing conditions.  Can I wait?  Or do I sell my toddler in Mexico?

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.

i agree with MJ. one caring and understanding gp is indeed worth many neuro's. (as long as no complications arise).

wrote on Dec 1^st, 2008 at 8:14pm:

i agree with MJ. one caring and understanding gp is indeed worth many neuro's. (as long as no complications arise).

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.

UnderTheRadar wrote on Dec 1^st, 2008 at 8:42am:

.........................................I was up all night with bad pain behind right eye again- doesn't feel like cluster, but not like migraine either...............

To answer your question: That would be the reason.

Marc

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…. ;)

Rolo is exactly right........you don't have to prove anything to anybody.  It is YOUR health that everybody is concerned about.  It's rough trying to see doctors when we can't afford to, and everybody understands that.  Since none of us can diagnose you, perform tests, or prescribe you medications, it's everybody's concern that you do see a doctor who can, whether you have CH or not.

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.  :D

How are you using the O2?  It's important that it be used RIGHT. At least 15-25 liters per minute with a NON-rebreather mask. Anything else is a waste of time. And keep on it for a few minutes AFTER the headache subsides.

I used it for years at 8 liters (back in the OLD days) -- it worked a little, but not well. When I got a higher flow regulator it was the difference between night and day. But right now I SWEAR by it and am a PUSHER for it.

Even if it didn't work one time - it's worth another try, but make sure you use it correctly. On the meds page, Chuck as an outline on how to do this.

Hugs BD

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.