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Newbie, losing my mind with anxiety

Hey all,
I’ve been stalking the site/facebook page/forums for a little while now, and I’m finally breaking down and writing something because I just can’t be silent any longer.
I am on my 3rd LOA in as many years from a call center job, due to migraines. Currently, my treatment is overseen by my pcp as my headache specialist dumped me a year ago because I wanted to start a family with my husband. She absolutely refused treat me while I was off birth control. I was completely left in the lurch, but at the time I felt OK because my PCP said she would manage my Topamax prescription and help out where she could with the migraines while I tried to get pregnant.
Well, here I am a year later, still not pregnant (now seeking infertility treatment), and my migraines are out of control. Today, I’m in that part of the country caught up in the nor’easter and after I post this I am going to take a fioricet, then curl up on my couch in complete darkness to try to get some relief.
This week things have just come to head, as my short-term disability has yet to be approved and I’ve been out of work for a month now. My disability rep says they don’t have an adequate listing of my symptoms to deem my claim as medically necessary, and my pcp won’t write any additional notes because I wasn’t reporting in to her every time I had a migraine. I feel really ripped off. She agreed to write the paperwork for the LOA, so obviously she believes in my condition, but won’t expound on my symptoms? Secondly, I have a migraine nearly every day, am I supposed to call and badger her office staff to say, “hey, I have a migraine, here’s a list of my symptoms, please pass it along to the doc.”? If so, when she took over my care for my migraines, she never made that clear to me. Like most people, I only seek additional medical care if I can’t control my migraine at home. (though they do know me by name/condition at my local immediate care center, “here for toradol, Zofran and iv fluids again?”)
Also! (and finally) I have an appointment to see a new headache specialist this coming Wednesday. I am terrified. My last headache specialist believed that people with headaches/migraines had no reason to stop working. So I’m afraid by going to this new place on Wednesday, I’m just going to get more of the same. Unless/Until I can get these migraines under better control I don’t see how I can return to my work environment with bright fluorescent lighting, sitting in front of computer all day, in a loud area with a headset attached as I try to take calls and manage people’s finances.
The place I’m going to is coming highly recommended by the doctor that first diagnosed with me migraines, back in the day. It’s also a headache center started and maintained by a fellow migraineur, and author of a book about migraines. But I can’t find any solid reviews about the place or level of care, and that’s also leading to my anxiety.
Does anyone have any thoughts about what questions I should ask at the appt. on Wednesday? How I should handle my pcp’s office and/or the disability rep?

  1. Hi burnc83,

    First let me say how sorry I am no one replied to your post in a timely fashion. By now you've probably seen the migraine/headache specialist - how did the appointment go? I hope you will be able to work with him to find a better solution for your migraine. I couldn't tell from your post what doctor it was, but can give you information for your next appointment. Take a look at this when you get a minute; and

    The FDA issued a new warning about Topamax and pregnancy a few years ago. They changed the classification from C to D which means there is evidence that babies may be at a higher risk for birth defects such as a cleft palate and/or cleft lip. This can occur very early in a pregnancy and/or even before a woman realizes she is expecting. It is imperative to discuss Topamax and pregnancy with the doctor before becoming pregnant, Stopping Topamax suddenly can create serious issues and should also be discussed with the doctor beforehand. This article has more information about Topamax and pregnancy; Our Topamax profile page and more information that may help;

    It's awful being in pain everyday and not being able to work. I work with a number of patients who indeed are on SSDI, short term disability and/or Family Leave Act. Let me provide you with information on migraine and disability that may help answer a few questions for you. We have an entire section on migraine and disablility that should be helpful; and Let me know if this is the information you are looking for on disability.

    I hope you don't mind if I ask, but by any chance do you take something every day or near daily to help relieve migraine pain? Doing so can create an unwanted problem called medication overuse headache. No one wants to be in pain everyday so we take medication to relieve our pain - makes sense right? BUT we can run into a big problem if we take migraine medications and/or pain relievers, whether they are over-the-counter or prescription, more than two - three times a week. If we do this we can end up in a daily cycle of endless pain that is hard to break and our migraines will be more difficult to break. I've been here before and it's not pleasant. Let me share information on this topic that I hope will be helpful;

    Hopefully your appointment went well and you will share your experience with us. Again, I apologize for not getting back to you sooner.

    I hope to hear back from you

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