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Susie,


I am in the same position you are with the fear of will my daughter ever get well and how to treat it.  We have a treating doctor but the treatment is controversial and it is hard to be certain it is the right path when so far it isn't working.  She's been housebound for 2 years due to a severe headache.


Here is my advice as another mom going through this:


Both of you should consider going to a therapist.  Not because I think her problem is anxiety in any way, but it would give her someone to talk to about it, without worrying about your feelings.  For you, because it would be someone else for you to talk about it with.  I recently went back to our old therapist because I need to talk about our situation and husband doesn't want to talk about it as much as I do.  Other people don't really get it and imply she should just get on with her life and/or we need to just crack the whip and she will hop to.  This therapist listens and is supportive.


You might try looking at Integrative Physicians.  I like to go to MD's or DO's that provide traditional medical care when needed but also alternative medicine.  If you do this, try to find out what alternative methods they use so you know if you are comfortable with that.  Not that I think her problems will be solved by taking supplements, but I think these doctors will be less likely to say it is anxiety and look for the cause.  My daughter had a disabling headache for a year and it took an out of mainstream doctor that ordered her MRI.  I know your husband is between jobs right now, so this might not be a feasible idea since most Integrative docs don't take insurance.  For us, even though some of our doctors are not on our plan, the tests they order are covered by insurance if done at the appropriate place.


I know you are not happy with your local ER but I don't remember if it is possible to go to another one.  I just took my daughter to the ER and the docs have now sprung into action even though they just treated the whole thing very casually before.  The admitting doctor recommended another neurologist and made sure we were able to see him.  I had requested a change to this doctor before and was told it is very difficult to change and that he didn't specialize in headaches.  Not true, according to the people in the ER.


Hugs to you and Jess.


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