Hi! I'll be glad to be of help with this issue.
I can imagine how frustrating, worrisome, and even scary this situation must be for you. You are clearly a loving and caring parent and seeing your daughter go through this at a time when she should be flowering with energy and excitement must be so difficult. I'm very sorry you're all going through this. It sounds as if it has been very hard.
You're asking in the mental health forum and so I will try to gear my answer toward that. You've been treating the problem medically, as a physiological problem, and that makes sense. So while this is the mental health forum, let me begin by saying that you may wish to consider hormonal connections. You may have already done this, though, and if so that's good. I'm referring to going to a gynecologist for assessment if the headaches are hormonally related. At this point, with the severity of symptoms and the extensive treatments already tried and failed, you might seek to go to the largest university hospital in your state and see if there are or is an expert in this area of hormonally related migraine and insomnia problems.
But now to mental health. You've asked for creative thinking on my part and I have taken some minutes to think about this. I will share with you the ideas I have even though some may be out of the box, okay?
The most conservative approach in mental health would be to have a psychiatric evaluation for bipolar disorder. There have been a number of studies I'm aware of that linked BD and migraine headaches. I tried to find one for you that's accessible online to the public. Here's one where the abstract is not too technical and it might help you in considering this possibility:
Again, there's no concrete evidence, but the repeating patterns made me wonder if an evaluation for this might not be warranted.
This next approach is a bit of creative thinking: hypnotherapy. It might be of use as I've read reliable reports of therapeutic help with both insomnia and migraines. Please note I am talking about only hypnotherapy, which is a recognized form of psychotherapy used by psychologists and psychotherapists. I'm not talking about people who put in ads in newspapers for hypnosis. Maybe those are useful or maybe not, I can't say. But a psychologist trained in hypnotherapy is a real licensed therapist. Even so, here's the important statement about hypnotherapy: hypnotherapy can help with a specific problem and that's why I'm thinking of it. HOWEVER, there are good and honest hypnotherapists and there are other types. Your only way of assessing is two ways: first, make sure he or she is a licensed psychologist. There is no licensure in the US that I know of for hypnotherapy. It's all a "self-licensing" here, which is not good enough. So you want to know his or her license number as a psychologist and call the regional licensing board to make sure there have been no complaints filed. Please do not skip this step.
Another approach, the "mind-body connection" is most related to alternative medicines but is becoming more and more accepted, especially in the chronic pain world. Headaches and insomnia can follow similar patterns, though, and so it is gaining more adherents there as well.
But this modality of mind body connection works on the principle that we are not built that way. Our "selves" and our "bodies" have an intertwined relationship and pain is not just part of our body's system and irrelevant to our "selves", our feelings, experiences, thoughts, etc. So let's look at something that ties together that pain and the inner self.
The idea of mind-body connection is that the physical symptoms your daughter (and most of us) are feeling are not the disorder; they are symptoms masking the emotional and psychological realities (mind) that each of us is too scared to face. On the surface it sounds strange and almost anti-modern. How can things about me I am not ready to deal with cause pain. This isn't the place to give a full class on mind-body connection, but I can tell you that you will find many resources on the web. I don't know if this framework appeals to your daughter or to you, but it is worth your considering given all the suffering you've been through.
I did a simple Google search for you on "mind body connection" and the first few items seemed like they were of interest. While they are not scholarly works on the subject, they seemed like they would be good introductions. Here is the web address for the search:
Well, those are some ideas that I can share with you from my training and experience and I hope they will help. Again, you've been through so much and I hope it eases up soon.
Okay, I wish you the very best!
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Dr Mark - i tried to answer "good sevice"4 - but not sure it is taking... sends me to a page that says im denied access but i did want to thank you for your reply. i dont think my daughter has bi-polar as she has never presented any of the classic symptoms - she is never "manic" / never has any high energy levels etc. do you still think its worth testing? The mind body connection is interesting - MASS general has a great program and i am willing to drive there from ct if i have too - but i will see if there is anything closer to htfd ct so that she could go to classes. Finally have you heard of anyone having success with acupuncture? that kind of goes along with the hypnotherapy as an alternative treatment thank you again!