My Genetic Curse - Migraines & Hormones
Migraines run in my family. My father and younger brother have them. My paternal grandmother had them. My brother has suffered from disabling migraines since he was a child - before anyone could really figure out what was wrong with him. I started having them when I was in my early 20s, although I remember having my first one while I was 18 and living abroad in Panama. It was a frightening experience.
I survived a long-term abusive relationship, graduated from college and continued my job as an NPR radio producer while trying to manage the worsening of my migraines - I was finally diagnosed with chronic migraines and subjected to the long list of preventative medications. All this being said, I've suffered from migraines for about 10 years now. Fortunately, my father spent much of his waking time bringing myself and my brother to the "top migraine specialists" across the country - after seeing so many doctors and not finding much relief, I admit I have a pretty jaded attitude toward these doctors who pumped me full of pharmaceuticals, only creating a whole host of new health problems for me.
Over the past 10 years, I've tried just about all the preventative medications, as well as Botox, which seemed like a scam to me. I spent at least 3 months dealing with difficult insurance claims revolving around the Botox and my migraines actually got a lot worse after my treatment. My face looked pretty, though.
About three years ago, I had the Essure procedure done - it's similar to tubal ligation - a small nickel coil is placed in the fallopian tube and after 3 months, you are in theory unable to get pregnant. My decision to have Essure done was because I have been too sick to even take a chance at becoming a mother. My health progressively declined for months and years following Essure. This procedure is toted as being "non-hormonal" but it in fact had a severe effect on my hormones. I had Essure reversed in February of this year and the positive effect on my health has been undeniable.
During the months leading up to Essure reversal, I had at least 20 migraines a month combined with debilitating premenstural dysphoric disorder. My migraines were progressively multiplying and getting worse due to Essure. My mood swings were unbearable and the not only was my head throbbing, but I was not digesting food (gastric stasis) and I was constantly cramping due to hormonal changes. I was unable to work and had become malnourished. I contacted a nutritionist in a different state who helped me run a comprehensive array of blood tests (why didn't my migraine doctor ever do this!?) - the results showed a great deficiency in most nutrients - and I found out that I have a sensitivity to gluten. During this time, I eliminated everything from my diet that wasn't plain rice, vegetables and organic meat. This drastic approach allowed me to give my digestion some much-needed rest and also identify food triggers. I have been gluten-free for over a year now. This nutritionist also helped me realize and accept that the Essure procedure was in fact affecting my hormones and migraines and that I was suffering from a variety of health problems because of it. I finally got up the courage to discuss my need for a $10,000 Essure reversal surgery with my family and then had the reversal done about eight months ago. Within two weeks of reversal, I was quickly regaining my health. It took my hormones about three months to normalize — and I even had two months without migraines! I've normalized a bit more now, which means that I'm still getting hormonal migraines around that time of the month, but my health is overall so much better than its ever been. I now rotate between taking injectible Imitrex, DHE and Toradol to manage my migraines because my stomach just won't digest when I have a migraine. I feel like I'm managing, although I still struggle every month. I certainly don't feel like I can hold a job — my husband and I run our own business, which gives me space to deal with my migraines.
The most encouraging thing going for me regarding my migraines is that I've finally started a Women's Migraine Support Group on Facebook. I've wanted to do some sort of migraine support group for a few years and I finally decided that Facebook would be a good avenue for it. It's a private group that's a safe place for women to share their experience, frustrations and resources — as well as provide and seek support. I think it's so important for us to form a support network among like-minded individuals — because it's hard for others that understand. Support isn't the only key to this — sharing resources and education is so important too and just doesn't get done among doctors and patients. I've learned so much more from reading Dr. Dawn Macrus' “The Women's Migraine Toolkit: Managing your Headaches from Puberty to Menopause” than I ever did from 10 years of seeing migraine doctors. And now I'm learning so much from other women in the support group.
Have you checked out the new Community Hub yet?