What to do when there are no answers?
I am 40 years old. I began having migraines, episodic, in my late teens, and they became chronic at some point in my early twenties. I spent a large amount of time, energy, and expense trying to find a solution. Doctors, medications, scans, tests, chiropractic, yoga, acupuncture, more doctors, more medications, massage, vitamins, supplements, etc. You’ve all heard that story before. It could practically be your story.
Eventually, when I was about 28 or 29, juuuussssst the right combination of medication (Topamax, which wasn’t yet being used regularly for migraine treatment), healthy lifestyle, magic fairy dust, and wishes on stars came together and I was feeling better than I had felt in years. Life was about as good as it gets for a chronic migraineur (and I’m not even sure I had the proper diagnosis yet at that time).
At 31 I had my first pregnancy. I had worried about going off Topamax, but it turned out that my body didn’t need it when I was growing babies. Or when I was nursing them. I stopped nursing our first son at 15 months and we conceived our second son when the first was 24 months old. The migraines had made an appearance in those months in between, but they were only episodic. Again during pregnancy I had no problem. I nursed the second until he was 18 months, which took us until the end of April 2011.
Several very stressful life events and multiple months later, my migraines were chronic again. My PCP prescribed Topamax again, but it didn’t work as it had the first time around. We tried other meds and other treatments, but within a year I was seeing a headache specialist who was new to our area.
I was so excited. A headache specialist! My very own headache specialist, and I didn’t have to drive nearly three hours -–one way-- to see him! And he communicated with me directly via email. And he made me feel normal. My PCP had really tried, but she had emptied her extensive bag of tricks. This doctor seemed to feel like there was so much more to try! And so that’s what we did. We started trying. Meds and supplements. Different meds. Cephaly. Botox. We were trying.
But here’s the thing. My guy? My headache guy? He left. After two and a half years, the hospital called me one day last April, midway between one appointment and the next, and told me that we had to cancel. He was moving on. To bigger and better. To Florida, in fact, rather than cold, dreary, and snowy northeast PA. Smart man. But where did that leave me? Doctor-less. Botox-less. Feeling quite defeated. And, to be honest? A little abandoned.
I called that same day to make an appointment at the Thomas Jefferson Headache Clinic in Philadelphia. I had to wait four months, until the end of August. So I waited. I’ve now had two appointments there so far, resuming Botox during the second appointment.
In the meantime, my migraines are worse than they have ever been. I honestly do not know what to do. I am married, and we have two children, now ages 8 and 6. I am the primary wage earner in our household. It is my job that provides the health insurance to all four of us. Our older son has life threatening food allergies to milk and eggs. Our younger son has Type One (insulin dependent) Diabetes. He is currently in half-day afternoon kindergarten. My husband works part time in the evenings, and is home with our son during the day. He is a wonderful, supportive spouse. A genuine partner in the sharing of household and child raising responsibilities, but it is still extremely difficult to work all day and then take care of the kids alone at night while he is at work.
My career is challenging and demanding. I work in a profession that has strict, state-mandated timelines. We are monitored for compliance by the state every six years. Because this is the year that we are being monitored, we had to provide documentation of certain things last year, and my health prohibited me from getting some of the necessary things done within the mandated timelines. This has created problems for me at work. Additionally, I have a new boss, who does not know me from “before,” when I was well.
I am in severe pain (I also have other symptoms, such as fatigue, phonophobia, difficulty concentrating, and neck pain, but the horrible pain in my head is almost always my worst complaint), and yet I have to do my job and do it well. I genuinely do not know what to do. I don’t want my job to be in jeopardy. If I don’t come to work, the work does not get done. No one fills in for me. No one else does the work. There’s only me. I am the only one here with the required degree and certification. If I’m not here, things snowball quickly.
I then have to take care of my children when I get home from work. And I want to spend time with them. I want to enjoy them. They are growing entirely too fast and I don’t want to miss it. Additionally, they have medical conditions of their own which really require me to be present in the moment. Mistakes cannot be made with regard to exposure to food allergens or with regard to insulin dosages. Mistakes in either of those things can quite literally be fatal.
For months I have been having daily migraines, most of them moderate or severe. I am advised to medicate only twice per week. And even that isn’t guaranteed to stop the pain. Even if it stops the pain, I still usually do not feel well.
I am in contact with my doctor’s office. I called two weeks ago, and was advised to increase one of my preventative medications by 25 mg, and to call them if it is not effective. Also was advised to add B12 (Riboflavin) because it was one that I haven’t tried. I left a message yesterday to indicate the increase did not work and to ask if I should increase by another 25.
But what am I supposed to do in the meantime? And on the five other days of the week? The days that I can’t medicate? How is a person supposed to work? Or to live a life? Take care of family responsibilities? I feel lost. What do people do when there is nothing left to do? How do you continue to survive? I just don’t know what to do anymore. I just can't sustain things like this much longer. I don't think I can hold it all together anymore, yet there doesn't seem to be any alternative.
Wow…it took much longer than I expected to explain everything, and I still feel like I left so much out. I don’t think I’m actually expecting any answers to the “what am I supposed to do” question. I’m just grateful that there’s a place to come where people understand. Thanks so much for listening.
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