What is the worst part for you of having a Migraine? Share to show your Support!
I am on day 13 without a migraine.
I’m afraid to say that out loud because I will probably jinx myself. This is the longest I’ve gone in quite awhile. I usually don’t go more than 2 or 3 days. It’s a little odd because I haven’t done anything differently.
No diet or medication changes, and I’ve actually been as stressed as ever. I’ve also been battling some weird cold/flu thing for a few days, which is always a trigger. Maybe, like my neurologist said could happen, I am finally, after almost 20 years, mysteriously and magically growing out of them.
I’ve been hesitant to write about these migraines in my blog (and their close friends, depression, and anxiety) because I am a person who tries very, very hard to stay positive and focused on my goals.
I am also a person who loves to exercise, hike, sing, socialize and spend time with my family and friends. These are the things I want to write about on my blog, not sickness and misery.
Unfortunately, the last 10 or 15 years I’ve turned into a person who is often times lazy, unmotivated, and unsociable. I’ve turned into a person who is afraid to commit to anything, who sometimes stays in bed all day, who is drowning in debt, who can’t hold down a full-time job, and who has all but given up on my dreams. The thing is, it’s not my fault, but I still manage to beat myself up a hundred times a day.
I got my first migraine back in 1998. I was working at the MGM in Las Vegas, a gorgeous hotel filled with movie stars and glamour and money and the awful stench of cigarette smoke.
I’d been sick a lot, struggling with a compromised immune system from said secondhand smoke. I figured I was just getting sinus headaches, and if at some point I could get out of the smoke they would go away.
So for two years, I suffered, popping Tylenol sinus capsules every day and powering through the best I could. I was barely functioning, calling in sick so much I used up all my sick days and vacation pay until finally, my Mom sent me to a neurologist.
Sure enough, I was diagnosed with “hormonal migraines” and given a prescription for Zomig. (One of many “triptans” used to treat migraines-they are vaso-constrictors, which means they help by narrowing the swelling of blood vessels). At first, it seemed like a miracle.
After years of over the counter pills that did nothing but damage my liver, I finally found some relief. One little tablet under the tongue at the onset of pain, and voila, almost instant relief.
For a few years I did okay, but once I turned 40 those “hormonal” symptoms that were causing the headaches escalated, and in addition to insomnia and severe anxiety, the migraines started coming on all the time, out of nowhere. The pills still worked, but I started getting something called “rebound” headaches. Great. The very medicine I was taking to treat a headache was causing more headaches. Thanks, big pharma.
I went from one or two migraines a month to 12, 14, even 20. Thus began my journey to find out what was really causing the migraines and how to prevent them.
Fun stuff, like yearly MRIs to make sure I didn’t have blood clots or tumors, taking horrible drugs with even more horrible side effects (anti-seizure meds that made my hair fall out, antidepressants that made me more depressed, hormone treatment therapy that just made the headaches worse, high blood pressure pills that made me dizzy, and at one point a very scary dependence on Zanax and Ambien).
Tired of the drugs, I went the natural route and tried all the diet changes: gluten free, dairy free, sugar and alcohol and coffee and everything good free, raw, vegan, all to no avail. I went to physical therapists and chiropractors, tried acupuncture and massages and cranial sacral therapy, homeopathy, yoga, meditation, essential oils, botox, all kinds of ridiculously expensive supplements, and finally, as a last desperate resort, a hysterectomy (which was needed anyway).
Nothing worked. If I had a penny for every doctor visit, every drug, every natural treatment I tried, I would be a rich girl. Then there were the hospital visits, times I was certain my brain was going to explode and I would rush to an emergency, sometimes be admitted, only to be given large doses of morphine and an enormous bill.
I had a friend ask me one time why I would go to the hospital for a headache, so let me make this clear: a migraine is not a run of a mill headache. Sometimes it’s not even a headache. A migraine can make you think you are having a brain embolism. A migraine is a sharp pain behind the eye or sometimes an achy feeling in the neck and shoulders, and eventually, this pain escalates to a point where you feel like your head is in a vice grip.
The pain is unreal, unbearable, and along with the pain, you may also experience fun things like nausea, dizziness, fatigue, irritability, aphasia, and crippling depression. Even after taking a Zomig or Imitrex or Maxalt or whatever flavor of the month triptan is available, the pain may subside but the other symptoms don’t.
I think the worst part is, I never know when they are going to strike. I can be having a perfectly great day and be knocked off my feet. This means I can’t plan or commit to anything. Me, a girl who once dreamed of singing for a living, who threw parties every chance I got, who depends on every dime I earn to pay my bills, who struggles with depression anyway, who once worked out two hours a day and pursued my goals relentlessly.
That “Me” was disabled and incapable of doing the things I loved. I know it could be worse- I am not wheelchair bound, I don’t have cancer, I don’t have MS or ALS or something terminal, but I am disabled nonetheless.
About 5 years ago I actually collected disability income for awhile but was unable to get long-term benefits so I sucked it up and went back to work. The thing is, I was so drugged up half the time I couldn’t focus on anything, and if I got a migraine, which was almost every day, I would have to go home.
So you can imagine how that worked out-I couldn’t, and still can’t, work full time. I pretty much gave up on the singing career, hard to stay in a band when I can’t get out of bed. I stopped committing to social engagements, and even though I still exercise and hike on my good days, there are many bad days where I can’t do anything.
The hardest thing for me and everyone around me is the depression. I don’t know if it’s caused by the migraines or if it’s just a demon that’s always been lurking around, but this new adjustment to a life spent mostly in bed does not help with the happiness factor.
There are days when I feel great, maybe 3 or 4 days a week when I am able to go on an awesome hike or actually commit to an 8-hour shift at the restaurant, and on these days I will start planning for the rest of my life. I’m cured!, (I think to myself), and I start looking for bands to sing with, I enrolled in 20 weeks of yoga, I sign up for some new workshop or class, I start planning a new career—only to be brought down by a week-long migraine.
This must be what bipolar people feel like. On top of the world and making life plans one minute, bedridden and dealing with uncontrollable despair the next.
I realize this is a pretty bleak blog post, not at all what a fierce living girl like myself should write, but there is an upside. There always is with me, as I am a “cup half full” person according to one of my co-workers.
The upside is that I make the most of every good minute I have. On the days I feel well enough, I put all my energy into a tremendous hike, I pull out my guitar and sing with all my heart (even if it’s just in my living room with the dog and cat for an audience), I learn a new skill or refresh an old one (hence the guitar), I spend priceless quality time with my family and friends, and I give thanks for all the people that love and support me. I FEEL so much more than I used to, and maybe because I have felt so much pain, I am also able to feel an abundance of love in my heart.
The people that have stood by me on this unexpected journey are the people I hold near and dear, especially my friends and my boyfriend and my Mom.
A little over two years ago, when Don and I moved back to Colorado, Mom gave me the t-shirt I’m wearing in the picture: “Today will be amazing”. A $10 shirt from Kohls that means more to me than any of my other possessions.
I had suffered a breakdown; the headaches and drugs and stress and no money and anger (WHY DID THIS HAPPEN TO ME?) had all gotten to me and I had to spend a week in the hospital before our move back to Colorado. She gave this shirt to me when I got out of the hospital, and it really did lift my spirits.
We were hoping that in being back home I would have a stress free life and thus help the migraines. A life where I wouldn’t have to worry about money for awhile (Thank God for Dad’s finished basement), where I could focus on getting the medical help I needed (also Thank God for Medicaid), and a life where I would be surrounded by the support of my loved ones.
Still, it wasn’t the life I dreamed about and I was pretty down when we first moved back. So when Mom gave me this shirt, I got the message. Things may not have worked out the way I dreamed, and it sucks to be sick and in chronic pain all the time, but there are still things to be grateful for.
I try to find something positive and amazing in every day, even on my sick days. It is challenging, believe me. I fall into “woe is me” moods and imagine what my life would be like without this illness.
Would I have my dream job? Would I have children? Would I still be in California? Would I be singing in a Broadway play? But those kinds of questions serve no purpose. Instead, I have to train myself to say: I am so happy to be home with my family, I am SO happy that I survived my meltdown in California, I am so happy my boyfriend has stood by me through all of this, I am so happy I have many good days and good friends, and I am so happy I have a Mom that loves me enough to be here for me no matter what, and in the smallest of gifts has changed my whole outlook on life.
Today is day 13 – a migraine free, so Today is AMAZING!! I’ll let you know how tomorrow goes. ?
Peace, Love, and Namaste,
What is the worst part for you of having a Migraine? Share to show your Support!