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This week, Diana Lee, a disabled attorney & writer and editor of Somebody Heal Me, from Lawrence, Kansas, joins us to talk about her life with migraines.
Can you tell me about when you first started experiencing the pain and what kind of pain it was?
I had my first migraine at around age 6. Migraines run on both sides of my family and are unfortunately quite common among our clan. I had migraine with aura most of the time as a child, and my migraines were most often brought on by sun and heat exposure and excitement surrounding new events and activities.
Did you seek help right away? If so, what type of help and, if not, why not? What did the doctors tell you when you did seek help?
My parents took me to doctors right away because they were petrified the migraines might be a sign I had a more serious medical problem such as a brain tumor. They didn’t realize before that time that someone so young could even get migraines. All the testing checked out okay, so I basically just learned to live with them. I didn’t receive any medication to help me until probably around 6th grade.
What have you tried to help you with your pain?
How much space do I have? Seriously, I’ve tried just about everything under the sun. Since my migraines became chronic (3-4 a week) about four years ago, I’ve tried many medications, therapies and alternative treatments. I’ve been on Inderal, Depakote, Topamax, Neurontin, Nortriptyline, Zonegran, Cymbalta and Lamictal (to name a few) for prevention. Right now I’m trying out Namenda, a drug approved for patients with Alzheimer’s Disease. I’ve tried physical therapy, cervical epidural injections, chiropractic care, massage, biofeedback, acupuncture, energy therapy
Can you tell me a bit about what worked and what didn’t?
I’ve had luck finding treatment medications that help me (Imitrex StatDose, Zanaflex, Zomig Nasal Spray and Migranal Nasal Spray), but so far none of the preventative medications or therapies have helped me. I find meditation and relaxation breathing helpful in coping with my pain.
How does having this pain make affect you in terms of how you live your life?
It affects every single aspect of my life. Every single thing that is important to me. Every single goal I’ve ever had for myself and my marriage. It is really hard.
I lost a successful career that I loved as a government attorney because of my chronic migraines. I’ve recently been approved for Social Security Disability. Although I’m thankful to have been approved for benefits, it is hard to come to terms with the notion that I am simply too sick to engage in the work I love. I worked so hard to become an attorney and I hate being forced to sit on the sidelines and waste my talents and knowledge.
My marriage is intensely affected by my pain. My husband is wonderfully supportive. I couldn’t ask for a better partner, but it is hard for us financially since I had to stop working, and the impact on our emotional connection has been difficult for both of us. Our sex life is often non-existent and our quality time together is severely limited.
My family and close friends are also extremely supportive, but coping with my situation takes a toll on all of us. And I’ve lost friends because they didn’t understand my limitations. Obviously they weren’t true friends if they were that lacking in compassion and understanding, but it is still quite hurtful.
If you were to look back over what you have tried/haven’t tried, would you change anything? If so, what would you change?
I wouldn’t change a thing. It is often frustrating to have tried almost everything under the sun to no avail, but ruling out each option one by one lets me know that I’m doing everything I can to help myself. I can’t know what will or will not work until I try. Trying so many options also allow me to share my experiences with others to help them make educated decisions about which options might be most helpful.
What would you say to someone in a similar situation who is just starting to try to find treatment and relief?
Please do yourself a favor and find a headache specialist. Don’t make the mistake of thinking that any neurologist can treat your condition and meet your needs. This simply isn’t true. You’ll save yourself a lot of time and heartache if you seek out someone who compassionately and knowledgeably treats headache patients from the outset. Ask for recommendations from people in your area or visit Teri Robert’s list of patient recommended specialists on MyMigraineConnection.com.
Thanks for joining us Diana – as someone who has migraines a couple of times a month, I can’t even begin to imagine what yours must be like.
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If you have a story you would like to share in a Company’s calling interview, I’d love to hear from you. Whether your battle is living with pain now or how you overcame chronic pain, it’s all interesting to me. The issue can be how you help or helped someone else with chronic pain, as well. This is how Diana’s story came to me; she emailed and told me about her story. If you would like to participate, just drop me a line at marijke@medhealthwriter.com. Thanks!
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Image: iStock.com
