Sunday, April 21, 2013

Gone...and Back again

This afternoon, a level 8/9 migraine struck me as I was driving home. Could it have been the sun in my eyes (even bothersome through my sunglasses), the change in the temperature (likely) or the three kids jovially talking in the back seat? Who knows? But it came and it pierced me right behind my eye and down my neck. My vision blurred on that ill-fated left side. I was glad to be close to home--it's not the safest thing to be carting about a car load full of kids with blurred vision--even in just one eye! We made it home, and I stuck my self with the painful Imitrex subcutaneous shot. And, within the hour, the pain had greatly subsided, and my kids and I were able to go about our day, dinner and what not. And, then....WHAM! It's back again! This life of chronic migraines is really getting old!

Thursday, April 18, 2013

No, I Don't Wear Shades at Night because I Think I Look Cool

If you're a migraine sufferer, sensitivity to light is probably part of your M.O. You probably sleep with an eye mask and where sunglasses indoors wherever there is fluorescent or other harsh lighting, right?  So, you know what I am talking about. Sometimes you get caught wearing your sunglasses at night, and people look at you, quizzically, wondering if you think you are just too cool for school. I don't drive in the dark with sunglasses on, honestly, I try to avoid driving at night whenever I can. But, when I have to, I do keep my sunglasses handy in case of have to stop at a floodlight oasis for gas or I have to run into a WalMart or Meijer or other such fluorescent lit store. And, if I am at the movies, you will definitely see me wearing my shades in the dark theater. Why?  Because the light from the screen seers into my eyes and causes a migraine. So, next time you see someone like me donning shades in a darkened theater or while browsing the frozen food section, don't assume that we are silly or think we're cool or weird or have bad eye sight. Better yet, don't assume anything.

Monday, April 8, 2013

To Medicate or not to Mediate...That is the Question

Yawning, yawning, nonstop yawning today! Why is it that ALL of my meds have drowsiness and/or dizziness as a side effect?! It is irritating. It is bad enough that I have to take several different meds as it is, let alone having to deal with the side effects. I admit, drowsiness is irritating, but, compared to some of the other side effects of many of the drugs used for migraine prevention, it is a relatively mild side effect. I was recently in the hospital after experiencing the disastrous side effects of an MAOI drug called Nardil. Upon taking Nardil for about a week or so, I had a horrific panic attack in which I ended up in the ER. Additionally, I felt suicidal, severely depressed and out of control, like I was going crazy--I could not get control of my thoughts! Luckily, I had the wherewithal to reach out for help, and I called my doctor. She had me admitted into the hospital right away and, after several days of purging this drug from my system and being treated for the daily migraines, I was released. So, I ask you, migraine friends, why do we take all these dangerous meds?  Is it really worth it in the end?  I gotta tell ya, I am really struggling with this one because most of the drugs do not help with the migraines, so I see no need to continue them and deal with the side effects. And, I get tired of being prescribed different ones that don't work, either. Maybe one day they will find the right one? Or maybe I'll stop taking them altogether and just deal in rescue meds...?

Saturday, April 6, 2013

I Accept Myself

"I Accept Myself Unconditionally as I am Today"---I heard this little tidbit while watching a documentary about food, incidentally, but it seemed to me to be very profound and a good mantra for a headache sufferer to have. As a person in chronic pain, I sometimes do not accept myself as I am because I cannot do what I want or need to do because of searing migraine pain. At those moments, I sometimes get depressed, telling myself that I should be able to do this or that, that I am not a good enough wife or mother or friend, etc. Additionally, at those moments, I sometimes feel anxious, I start to worry that my friends won't like me anymore because I always have to cancel on them, when I was working, I used to worry about how missing work was affecting my work record, what my colleagues were thinking and I would beat myself up for not being there for my students. I feel anxiety that I will never get better, my heart starts beating faster at the thought of always being sick, my palms get sweaty, I feel restless, hopeless, sometimes helpless. Sometimes, I want to scream and thrash around because I am so upset that I got landed with chronic migraines, which has led to depression and anxiety disorder. Now, I have a triple whammy to deal with every day of my life and to burden the lives of my family and friends. This is a hard pill to swallow (much like some of the many I take on a daily basis--sorry I couldn't pass up the pun!). It is difficult to accept that there are some things beyond your control and that pain cannot always be controlled and that depression and anxiety can creep up on your and alter the your life plans. You can end up in the ER any given night when the headache decides not to respond to your abortives/rescue meds; or, if you are like me, a panic attack may grip you without warning and send you to the ER in an ambulance! Or you may end up in the hospital for 12 days when you have a very bad reaction to one of your meds! All of these types of things affect everyone in your life as you scramble around figuring out who is going to watch the kids or cover for you at work or make your apologies for whatever event you have been forced to miss. When these things happen, it is really hard to keep your chin up and remain positive. It is really difficult to accept your lot and life and, even, to accept yourself. I think that this is because this kind of life is, obviously, not the one you would have picked for yourself and you hate being such a burden on your family and friends. This is not the vision you had for your life.  This is not how you want to be. But, what if you can just accept who you are every single day, even on the really bad days?  Could you, if you tried? Would you want to?  Of course you would. Does accepting yourself as you are mean that you have given up, that realize that there is no hope for you, you aren't going to get better? Absolutely not. Accepting yourself today means that you accept yourself every day and that, as you grow and change, you accept yourself, as you get better and have pain-free days, you accept yourself, when you have bad days, you accept yourself. I think there is a great freedom in that.  Say it. Learn it, write it down, repeat it:  "I Accept Myself Unconditionally as I am Today."

Wednesday, April 3, 2013

Beast of Burden

"I'll never be your beast of burden
I'll never be your beast of burden
Never, never, never, never, never, never, never be

I'll never be your beast of burden
I've walked for miles, my feet are hurting
All I want is you to make love to me"
Beast of Burden, the one and only Rolling Stones

Beast  of burden--the kind of animal that you use to carry a heavy load for you, like a mule. A work animal. It occurred to me today in thinking about everything I do and how badly I am hurting while I am doing it, from cleaning to cooking to grocery shopping to attending my daughter's softball games and everything in between, that I have made myself the beast of burden for my family and for myself. I never say no, no matter how bad my head is throbbing, no matter how times I secretly run off to the bathroom to vomit, no matter that I may be seeing auras or feeling unsteady on my feet, I let my family and myself keep piling the burden on. Why do I do this? Because I feel obligated to give my family the best of me, even at my own expense. Because I love them and I feel guilty when I let them down. Because I don't want to put any burden on them.

And, it's not just me. I talk to my migraineur friends and they all do it. They all take on too much in order to appease family or friends or bosses. They all have made themselves the beasts of burden in their own lives. We migraineur's call it, "powering-through." And we say it with a kind of smirk of achievement, we "power-through" our pain and make everyone happy--we save the day-we are superheroes! Not exactly. This practice of "powering-through" just makes us sick. You can only pretend like you're not in pain for so long until you hit a wall and end up, most likely, in the hospital. Even Iron-Man has to recharge his batteries. So, take a page from Superhero 101 and get someone else  to do your bidding, ask your sidekick.

Seriously, in the words of Jagger "never, never," Well, you get the picture: Ask for help. If your head is killing you and you cannot make it to the game, send your husband or ask your kid's friend's parents to drive this time, you can drive their kid another time. No energy for the grocery store?--cereal for dinner! It won't kill your family to eat Cheerios at night, trust me. Head feels like it's in a vice and you don't know what to cook for dinner--there's this wonderful invention called take-out! Call them! Don't burden yourself with every little thing. Be a real hero and no when to say no, know when to ask for help, know when it's time to take care of you.

Tuesday, April 2, 2013


I am on the inside climbing the walls, screaming, scratching, running with no end in sight. On the outside, I appear normal, maybe a nervous shake of my leg will give me away. I feel crazy. I don't look crazy, but I feel crazy. I feel crazy and my head hurts. I want to bash it into a wall until it stops hurting; the thought of suicide even crossed my mind. Sounds crazy, I know. But that is how I feel. This was me a week ago. That's what landed me back into the hospital. Doc says the medicine made me feel that way. And, obviously, my migraine needed to be dealt with, as well. A week letter, I feel better. Not crazy but no cured. I'm afraid I may never be cured. And, my head? I did not pound it against the wall, I took the DHE treatments. And, now I can say that it still hurts, but it is at a manageable level. I know it won't stay that way, not for very long. And, that, is my cross to bear. I accept it. I have chronic migraine disease. I live with pain. But, dear friends, the point is, I live. I reached out. Always reach out to your doctor if you feel like your meds are not right, it's your body, you are in control of it. And, if that doc won't listen, get yourself a new one. And, live on, fight on.

Monday, March 25, 2013

Being Mindful

Mindfulness...being mindful...I took a class on this during my stay in the hospital last week. Well, it wasn't so much a class as a talk, since I was the only one who showed up for it! Even so, I enjoyed learning about the concept of mindfulness and have tried to be more mindful every day. So, what does mindfulness or being mindful really mean? Well, I'm no expert, but from what I understand it means, really being in the moment, experiencing every thing at a particular moment. For example, if you were being mindful right now, you would understand and note the smells around you, what exactly you are doing, the sights that you can see, the feelings or emotions you are experiencing, any experiences of taste and touch you are having right now. Furthermore, mindfulness means understanding the fact that the only time is now--the past is just a concept of a certain time because it's over and the future is just a concept of time because it hasn't happened yet, the only thing that is real is now. Right now. So, focus on the now. This makes so much sense to me, and, as a person who stresses easily and doesn't handle stress well and is prone to anxiety and panic attacks, this really makes sense to me. Since being home from the hospital, I have tried mindfulness exercises several time and find it very soothing, even cathartic, at times. I think continuing to practice mindfulness will help me with the anxiety and maybe even make me a better writer, as I force myself to be a better observer of my world. Here is a link to a wonderful video on mindfulness: I hope you will try it!

Thursday, March 21, 2013

Guinea Pigs

This is Night Two of my hospital stay. Yes, you read it right, hospital stay. I'm back in. This is my fifth or sixth time admitted because of migraines! During my first stay here, I met others like me---people who had returned to this place four, five, six, twenty...times! I remember thinking, "What the hell?! Don't they get it right the first time around here?!" I knew very little then, though, I, of course thought that I knew it all. The truth is, with migraines, there is no getting it right the first time (well, maybe, for a very lucky few). Migraines are extremely tricky. There are several different types and several different symptoms that go with each of these types. Likewise, migraine sufferers experience their migraines in a myriad of different ways. Furthermore, since migraine has only fairly recently been recognized and, thus, researched, there are not a lot of treatments out there for migraine. In fact, there really are no drugs, specifically for migraines. All the preventatives started out as something else--antipsychotics, antiseizure meds, antidepressants, and it just so happened that some of them helped people with chronic migraine. And the abortives are basically the same way. So, you can see that undergoing migraine treatment is much like being a guinea pig, as they say, trial and error. So, here I am again. I tried to be a good girl and not take too many Zomigs, but, as before, I failed. What am I gonna do?! I just can't lay there and take the pain, and I hate going to the ER for a migraine! Anyway, to the point, I am here because I need to get off the Zomig. I don't know what the doc is going to replace it with. Truthfully, I am pretty scared. Also, I have been having a lot of anxiety lately and that needs to be addressed. So, fellow migraine ninjas (yes, you read that right--ninjas are awesome!), I am going to retire for the nigh, I can feel the Klonopin kicking in...

Tuesday, March 5, 2013

Stick around, Maybe You'll Learn Something

I am disabled. I can walk, and I am not blind. But I do have a debilitating condition. I am disabled, even though you cannot tell by looking at me. I have chronic migraines. The pain I live with is intense and affects every aspect of my life. So, why do I feel embarrassed or even ashamed to tell people that I am disabled?  There is no shame in this, right? So, why do I always feel like I have to explain myself? Because I do. People don't get it. Unless you live with chronic migraine, you cannot possibly get it. So, when I meet a new person, I have to explain what a migraine really is--it's so NOT a headache--and how a migraine can debilitate you, how a migraine can disrupt your whole life. Sometimes, I get tired of explaining it. But, I just swallow my pride and realize that when I have to explain myself, I am teaching somebody something not just about migraines but about acceptance and about not making assumptions. So, maybe all this having to explain myself is really a good thing. Well...I like to look at it that way, anyway.

Tuesday, January 8, 2013

Migraine Symptoms, No Headache...What?!

On December 17, I was feeling "off" all day....I just didn't feel right. I felt out of it, slow, just weird, not myself. In the evening, my symptoms started to get more pronounced; my vision started to blur and I felt dizzy and nauseous. I figured I migraine was coming on. These symptoms are common when I get a migraine. Then, oddly, my whole left side became numb feeling, tingly--even my face! It felt like my face was swelling or going slack, my neck all the way down my feet was tingly. I couldn't walk straight! I sat on the couch, thinking that a migraine was coming, getting ready to take one of my rescue meds. But, a the migraine didn't come, the numbness just got worse! Hubby took me to the ER. I have a CT scan and blood work done. They couldn't figure out what was going on. Luckily, I had an appointment with my neurologist the next day. I was still experiencing the numbness at this point. She put in the hospital and I had MRIs and and MRA done. Luckily it was nothing serious. The neurologist said that I was having the symptoms of a migraine without the pain, a "silent migraine" she called it. I said, "so, what do I do about it." She advised me that I just had to deal with it, just treat it like a migraine--rest, lay down, don't drive and, if the pain starts, take your meds. Ok, great! Now, I have to deal with screaming migraines and silent migraines! What next?!