What’s the most frustrating part of having migraines? Share to show your Support!
A few months ago I wrote my first migraine story (“Today will be amazing unless I get a migraine”), and at that time I’d been a migraine free for 13 days.
I went 8 more days without a migraine, and then, BOOM, they came back with a vengeance. No rhyme or reason, there never is. I’d like to think it’s the cold weather, or in Colorado’s case, the ever-changing weather, or maybe the dry air that plays havoc with my sinuses, or changes in barometric pressure (I don’t even really know what that means), or maybe just the fact that I’ve been sick since Christmas.
Unfortunately, with migraines, there is no clear-cut answer. For as much research that has been done, and for as smart as those neurologists are, there is still no cure for migraines and no solid explanation as to why some people get them and what causes them. As I wrote in my previous story, I have literally tried EVERYTHING!!
People love to make suggestions, and I know they are just trying to help, but please, you don’t need to suggest anything unless you are an actual migraine sufferer and something has worked for you. Even then, what works for some people doesn’t always work for others.
My lovely aunt suffered from migraine headaches for 40 years (and I never once heard her complain), and finally found relief with diltiazem, a calcium channel/hypertension medication. My neurologist, logically thinking this might work for me since genetics were obviously at play, tried this approach, but it didn’t help, it just made me light headed. We’ve also been trying Botox injections for a while because according to many studies, a high percentage of sufferers are finding relief with this treatment.
So far the only relief I’m getting is a smooth forehead. I love how he keeps asking me about certain anti-depressants and anti-seizure medications, not bothering to look at the 80 pages of medical records I brought in. Hello, Mr. Smart Man who went to school for 100 years, read my records! I’ve tried them all, and they don’t work. Just to appease him, and because I’m desperate, I finally decided to try an anti-seizure med I’ve probably already tried (but can’t remember because there’s been so many), and so far it’s just making me want to sleep all day (which is bad because the migraines already make me want to sleep my life away).
People love to ask me about my diet, which is ironic because I am one of the healthiest eaters I know. These people may think they are trying to help, but it really just annoys me. For 7 years I went without coffee, dairy, gluten, and pretty much anything good. I tried the raw diets and the high alkaline route and even went vegan for a while. Basically, I drank green tea and ate salad. I lost a lot of weight, my skin looked great, but I was sick all the time and my migraines just got worse and worse. IT’S NOT MY DIET BUT THANKS FOR ASKING!
Read more: Drinking Water as A Way to Stop Migraines
Sure, if I eat too much sugar or drink too much alcohol or indulge in a lot of rich food I will sometimes get a headache or feel gross, but doesn’t anyone? For the most part, I eat a little of everything in moderation, that’s what I’ve found works for me. I don’t know about every migraine sufferer, but for me one of the worst things that go along with the headaches is nausea, and it’s nausea that keeps me from eating the things I want to eat. People who are on the gluten-free bandwagon don’t understand that for a migraine sufferer, things like toast, cereal, oatmeal, and chicken noodle soup can be staples. (I’m not allergic to gluten anyways, thank God).
I don’t stay away from certain foods because I think they are triggers, I stay away from them because they won’t stay down if you get my drift. Then there are the people who are anti-pharmaceuticals (which I understand, nothing wrong with that!) and ask me about all the natural treatments. Yes, I’ve tried all of those too, thank you very much. Massage, physical therapy, and chiropractic treatments can all help with general aches and pains, and sometimes they help me feel better after an attack, but they don’t prevent my migraines.
Acupuncture is relaxing and therapeutic, but once again, no preventative effects. Homeopathy and craniosacral therapy have both helped a little with my immune system, but they are incredibly expensive and did zilch for the migraines. Wow, I’m not giving my fellow migraine sufferers much hope, am I? I’ll be brutally honest, it sucks.
Every time I try a new treatment or see a new doctor, I have so much hope, only to be brought down by another attack. The biggest disappointment was my hysterectomy. I underwent major surgery, which I needed for numerous reasons, but the big hope was that taking my ovaries out would take away the hormone imbalances- which I was sure were the main migraine culprits.
Granted, I am still on an estrogen patch, but it’s a very low, steady dose, and it’s the opinion of most doctors that it’s the ups and downs of the hormones that cause the migraines. I would appreciate any input from the community here, maybe I should go without the estrogen completely? That may bring on its own slew of problems…so it’s a hard call to make. Anyways, this follow up story is not quite as positive as my first story, but that day I was hopeful. Today I am discouraged. Such is the life of a migraine sufferer.
GOOD DAYS AND BAD DAYS. THE INVISIBLE ILLNESS.
The disability others don’t see as a disability. On the outside, we look fine. We are not in a wheelchair or drooling from the mouth, we aren’t missing a limb or hooked up to an oxygen tank, we aren’t shaking uncontrollably or having seizures. We have days where we are at parties with our friends and families, or out hiking or bike riding.
We have days where we are having the time of our lives, so how can we possibly be disabled? The rest of the world doesn’t see the days when we are curled up in a ball with an ice pack on our head, hot tea by the bed, medicine handy, phone nearby in case we need to call 911 (which we usually don’t but it feels like we do), crying because the pain is so bad and it all seems so futile. The rest of the world doesn’t know that we can’t work full time and can’t pay our bills and that many of us are on Medicaid and thus don’t have access to the doctors we need.
The rest of the world doesn’t know that we had dreams and ambitions like everyone else and that we had to give up on those dreams not because we are lazy and unmotivated but because we are TIRED AND WE ARE SICK.
My family and my boyfriend and my friends try to understand and try to be supportive, and I honestly don’t know what I would do without them. Still, I think that unless you are a true migraine sufferer you can’t really understand the frustration and the pain, physically and emotionally. My family is so supportive and helpful, yet I see the disappointment in their eyes or hear it in their voice when I have to bow out of an event. I know they would do anything they could to help me, and they have, but the biggest thing I need is for people to understand that I can’t make commitments. I just can’t.
I have to live my life day to day, and some days I will be there for the party and some days I won’t. It’s not a great way to live, but hey, I’m alive, and on the good days, I love the way I live. Here’s hoping that along with all the other cures science is researching, a cure for migraines is on the horizon. And here’s hoping that maybe some of you other migraine sufferers will find comfort in my story, identify with my journey, and even better, share your tale of success!
Peace, Love, and Namaste,