Doctor doesn't want to figure it out

[jenshead]

I am a 23y/o female that presented with very sudden dizziness, nausea, and severe headache at age 21.  Without medication, it is constant - only goes away when laying down.  Two neurologists have diagnosed me with migraines and have been throwing tons of medications at me.  One helped for a while but isn't as effective now.  The other day I was very straight forward and asked my doctor if she would try to figure out why I am having these migraines (even she admitted it is not a normal presentation of migraine).  The answer - no.  She said that I may never know and that a dr can't figure it out from just looking at an MRI.

That answer is just baffling. What can I say to my doctor to change her mind?  It really bothers me that a doctor will only throw pills at me and nothing else.  I have also been told by my PCP that other doctors in the area will refuse to see me since I have already seen local ones.

Thanks in advance

[jenshead]

I'd like to focus on my communication question.  What I can say to my doctors to get them to be more aggressive?  If this were contagious, I would be happy to spread it to them to get my point across!

[Dr Santos]

Hi,
Thanks for the update. I do understand how you must be feeling about trying plenty of medications with different side effects. But with migraine, aside from avoiding the triggers, both preventive and abortive medicines can be the best way to get relief,as have been the management plan of the other doctors that you have seen.  There are also other ways like complementary and alternative medicine that has work for some. A good communication line with your attending is very important in order to get to your goal of making it work better with her. Otherwise, you can ask for another referral to other doctors who will help you figure it out and be more aggressive in ordering diagnostic tests to determine the underlying cause.

[jenshead]

Many, many diagnostic tests have been done prior to me seeing this neurologist.  I will go into details if you like, but the point of this post is to learn how to better work with my doctor.  The only things that were found were a nystagmus and some other eye problems (couldn't read for the longest time) and a chiari malformation which has been dismissed repeatedly.  I still kindly mention it at every appointment though, and am looking at seeing a specialist in that area.

I have been sick for a year and a half and have spent every single day of it researching and journaling.  Without medication, I am bedridden.  With medication, I can do no more than sit on my butt all day.  The medication that helps me the most is diamox, but either it is wearing off or my condition is getting far worse - and yes, I told my dr that and she just wants to try more meds.  I have been on a TOOOON of meds and have had terrible side effects from just about all of them.

I know what the triggers are and have repeatedly informed my doctors (they say it's weird and then move on to the subject of meds),  The triggers are any kind of strain or anything involving my neck...and they have gotten progressively worse.  Sneezing, coughing, laughing, lifting, turning my head, bending over is a REALLY bad one, any kind of physical exertion, reading, and it goes on.  There are days when I can barely walk because I feel each step booming in my head.  Avoiding the triggers means sitting on my butt all day, like I said.

Trying medications for years is not an acceptable answer.  The next time a doctor tells me that, they will probably have to send security and/or psych in to get me.  At this rate, I will never be able to take care of myself or have children and holding down a job will be a constant struggle.  

[Eddie1994]

I would agree with Dr. Santos.  It's very surprising what headache journals can provide for both you and your Doctor over time.   It took 17 years of dilligent hunting to find the cause of my wife's migraines and surpisingly she now knows what to avoid to prevent a migraine.  

[Dr Santos]

Hi,
How are you? Were there diagnostic tests done? Primary headaches such as migraine headache usually responds to avoidance of triggers and both preventive and abortive medicines.  There are plenty of medicines available in the market for migraine headaches. It may take a while to determine the one suited for you. If your present medicine is not working, inform your doctor about this for proper management. A headache journal may also help determine the possible triggers that you could avoid. Take care and regards.