You Don't Really Expect Me to Read This

Last night, while sitting up alone, writing, battling insomnia, again, I started thinking about the parade of doctors that have come in and out of my life, GPs, neurologists, psychologists and so forth and the reasons why I left them. Usually, I did not choose to leave them. Most often I switched doctors due to referrals, moving or insurance issues. Anyway, my point is that I was thinking about my current neurologist, the one that I blogged about a few days ago. The one that would not acknowledge my opinions, resistance or fears and insisted I stay on Topamax and give Botox another shot (yes, pun intended--I like puns : D ) --yeah, he's the one. It dawned on me, during my musings, that I had forgotten to mention in my post that at my last visit he had flat-out refused to look at my migraine calendar (the one I posted on here). More specifically, he laughed and said, "You don't really expect me to read all of this, do you?" At the time, I was stunned, but I was not insulted. Why was I not insulted?  Because I realize that he is a busy man, and it is a kinda long calendar, blah, blah...
Last night, thinking back on it, I was a little disappointed and angry in myself for demanding that he not look at it. No, of course, I don't expect him to read every word, but he is my doctor, my caregiver, he should have, at least, perused it! It is kinda long--and why is it long??--Because I am sick, I have migraines every single day and I am anxious and depressed and I have auras and vertigo and dizziness and a plethora of other symptoms that he should care about if he cares about treating me properly, right?  I don't think that is too much to ask.

Migraine Diary

 

Migraine Management/Pain Diary

Date: ___________

Hrs of Sleep: _____ 

Quality of Sleep:  ______________________ 

MedsTaken________________________________________________________________________

Overall Health Today:  1  2  3  4  5  (1=Excellent, 5=Poor)                   

Migraine Pain Rating: 1  2  3  4  5  6  7  8  9  10 (1=Mild, 10=Debilitating, Worst Pain Ever) 

TIme Migraine Began: _______________________   

Time MigraineEnded:____________________

During Menses (y/n) _________

Weather Today: ________________________________________

Any Food/Drink Triggers Consumed Today:_______________________________________

Location of Pain:  __________________________________________________________

Description of Pain:  ________________________________________________________

Symptoms Associated with Migraine: ___________________________________________________________________________________________________________________________________________________________

Activities Done Today: ____________________________________________________________________________________________________________________________________________________________________

Activities Eliminated Due to Migraine/Physical Health: ____________________________________________________________________________________________________________________________________________________________________

Feelings Today:  ____________________________________________________________________________________________________________________________________________________________________

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Off the Hook

On the migraine forums that I visit and garner support from almost daily, a fellow migraineur brought up the topic of guilt. One that any migraineur is all to familiar with, and is very frustrating, disheartening, and, overall, just plain sucks! I have to talk myself out of feeling guilty all the time. Yesterday, when I made it to my daughter's basket ball game, I felt very good, but when we got home and I had to lay down afterwards, I felt guilty. Last night, when I was still in bed donning my face mask and ear plugs, and I couldn't make dinner, I felt guilty. My husband assured me that he didn't mind making dinner...again..but I still felt guilty. I know this isn't my fault. But, ya know, sometimes knowing that, understanding that this is not my faulty doesn't make me feel any better, it just pisses me off! It isn't fair to have to constantly make sacrifices and for those around you to have to pick up the slack because a migraine ambushes you. One who knows this struggle, a migraine-sufferer, like me, Jewishmother from the site, migrainepage.com writes:

I think guilt is a common emotion for a lot of us. I feel guilty because I: can no longer work and contribute financially, have to cancel plans at the last minute, wake up my husband in the middle of the night so he can massage my aching head, and even though I spend all day at home some days I still can't get done basic chores due to my migraines. We need to remember that the migraines are not our fault.........we are being bullied by our bodies and we are not choosing to be sick.

I constantly have to remind myself of the things that I am able to do and that I am doing my best. I think we all push hard to go out and do things when we should be home - I think that is human nature - and it is okay to do that now and then. We need though to take care of ourselves and let ourselves off the hook when we do have to cancel. We are not our illness but we do have to make room in our lives for it. My husband and my best friend are very supportive and understand when my migraines get in the way......they are by my side when the pain is at its worst and bringing me drugs, ice, heat, whatever I am asking for to help.

Guilt is a normal response but please don't pay too much attention to it when it raises its ugly head.......

Good advice, Jewishmother, and I think that is the key, having those around you who will be there to pick you up when you need them to and to choose to ignore that guilt when it comes around because it will. Yes, it will, again and again. And, for me, I have to let go of the anger. I know this isn't my fault, and like, my friend, Jewishmother, advises, I have to let myself off the hook.

Time for a New Neuro?

Short update:  Still feeling like a whino...I have been stumbling around in a Topamax-induced haze since going back on the stuff. It sucks! I can't feel my limbs and, now, even my lips and around my mouth are numb! I can't go anywhere, and, if I stand up for too long, I feel like I'm gonna pass out! I cannot go on like this. I don't know why the doc insisted I stay on this drug?! It doesn't help the migraines, and the side effects are unbearable! I think I will be looking into switching neurologists....again!

Visit to Neuro

I saw my neurologist yesterday. It didn't quite go as planned. I had expected to leave there not sticking with Topamax and not rescheduling for Botox. Wrong again, Ronald! My blood pressure was really high, 172/120 and the doc said that it being so high was probably adding to the migraines, not to mention the fact that I haven't been sleeping and have been severely depressed, both of which, he reminded me can lead to more headaches. "Yes, Doc, I know," I said, "but, the Topamax isn't working, I'm still getting migraines everyday! And my whole body hurts, is that the meds or because I'm depressed; I'm just so sick of being sick!" He indicated his understanding and explained that I was still on a lower dosage of the Topamax, and he didn't think we should abandon it yet; I could still go to a higher dosage. With some reservation, I agreed. As for the Botox, Doc explained that it could take up to three rounds of Botox before the patient notices any reductions in migraines, so he scheduled me for my second round of injections in April. Honestly, I do not know if I will keep this appointment. He also gave me enough blood pressure pills to last me until I see my cardiologist in two weeks and told me to talk to my psychiatrist ASAP about getting back on an antidepressant. That is something I am really trepidatious about; I don't have a  good track record with antidepressants, but I will talk to my psych about it.  So, when I got home, I took my 200 mg of Topamax and my blood pressure pill (hydrocholrothiazide 25mg) and stumbled around like a drunk until my family insisted I go lay down.  I hope the heavy limbs and drunk feeling will go away....

Mission Accomplished

Yesterday I went grocery shopping. I wish I could say I drove myself there, but, no. My husband dropped me off and picked me up about an hour and a half later. But, I achieved this. I went grocery shopping. I had to take a Zomig and an Ibuprofen 800 in the midst of my shopping to squelch a burgeoning migraine, but I did it. I successfully went grocery shopping, alone. When did my life become this?  When did grocery shopping become a Herculean task worthy of celebration upon completion? 

If Only it Were Just a Headache

Being sick all of the time and having no control of it or over your life is not only frustrating and infuriating, but it is also depressing. I try, of course, to keep a positive outlook and count my blessings. Lately, though, I've been in a funk, I guess, is the way I know to describe it. I feel so depleted. It's like I don't have the energy to be positive. All my energy is spent being sick, worrying about being sick, and, mostly, worrying about my kids and how they are doing with all of this.  They seem happy, but my girls are worried about me, and I have a lot of guilt about that. They shouldn't have to worry about me.  My middle daughter probably asks me at least three times a day if I'm okay, the sweet thing. She has a basketball game coming up next week, her first one. I know she is worried that I will be sick and not be able to attend. I am, too. I know that I will be there, raging migraine or not. I'll fake it if I have to. I've done that a lot for my kids so they don't have to feel bad or worry; it's not their job to do that. I'm the Mama.
Anyway, I don't know if I've conveyed what I wanted to in this snippet of my life or not. But, I'm getting more down just thinking about this and reading it myself, so I really don't want to dwell on it anymore for now! Migraine is something that a lot of people don't understand. All of the pain, sacrifices, suffering and so forth that affect the migraineur and her family most people don't even realize, and I hope that this blog will help people to begin to understand some of these things.  

Double Whammy

Yesterday was rough. After waking up with a migraine and dealing with that most of the day, I was finally able to get some relief and cook a simple dinner for my family, catch up on laundry and even visit the local pharmacy for eyeliner and hair dye.  After the kids went to bed, Hubby and I had a good talk about how I've been feeling. He's really trying to understand the funk I've been in, emotionally, lately.  He doesn't quite get it, but I love him for trying. After all that, I was feeling pretty good. Hubby went to bed, and I retreated to the living room for some quiet "me-time." Then, the bees! An aura. First, flashing red lights (the bees), changing into zig-zagging wavy lines, pulsating, changing colors, then a loss of peripheral vision in right eye. This lasted only a few minutes. But, then, came the migraine. A searing, intense pain. I spent the rest of the night and wee hours of the morning on the living room couch suffering this migraine. I was finally able to sleep about four o'clock this morning.

Morning Malaise

My frequent companion, Insomnia, kept me company last night. I was up till almost four in the morning; at first, lying in bed, trying desperately to sleep, wiling my racing thoughts to halt; then, I was planted on the couch watching episode after episode of Teen Mom on Netflix--a show I had never watched before and one that I feel a little abashed about admitting to having watched. I just could not sleep. I had to do something. I tried reading, but my eyes would not focus, so that cut out writing and drawing--two of my other favorite nocturnal pastimes. So, bad TV it was. Anyway, after spending....er...wasting the night this way, I was not at all surprised that I woke up this morning with a killer migraine. Also, it is really foggy here, and the weather plays a big factor in my migraines. Any noticeable fluctuations in temperature of barometric pressure and I am sunk! The pain this morning is about 8/10. It is located on the left side, primarily, this time and my neck is stiff, my whole body aches, I am extremely fatigued, dizzy, I have puked a few times already and feel nauseated still. Luckily, the Maxalt dissolves under my tongue, so I don't have to worry about keeping it down.  My poor son, I wish he didn't have to see his mother like this. He is too young to understand. All he knows is that Mommy is too sick to play cars right now...

Damned if I Do, Damned if...Well, you Get the Cliche..

Right now I've got a level 4/10 migraine pounding on the right side of my noggin, radiating down my neck. No aura preceded this one; it just appeared. My vision is a little blurred, I'm dizzy, my limbs are tingling, I've got my shades drawn and my shades on my face in the house to block out all possible light; my ears are ringing; I'm dead-ass tired and nauseous as hell. I haven't eaten today. I know that is part of my problem. The doctor is always telling me not to skip meals, but when you are nauseous all the time, that makes it really hard. So..eat and probably hork? Or not eat and probably make the headache worse?  Also, take meds now or wait to see if it gets worse? If I miss my window, the meds won't work at all, and I may end up with a level 10 killer migraine from hell and in the ER!  But, I'm trying to be good and not overuse my meds...

Ditch Dopamax?

Two questions for today:

1.)  Should I stop taking Dopamax...uh..Topamax? As I mentioned before, the stuff doesn't work, and the side effects suck. So, why keep taking it? There really is no question of if, I suppose, the real question is, how? Do I have to wean myself down off of it or can I just quit it cold turkey like a cheap date? I'll have to do some research and put in a call to my neuro today...

2.) The second question of the day is:  Will I be able to make dinner for my family tonight??  Unfortunately, the answer to this question cannot be discovered through research or by making a phone call. Only The Migraine (yes, The Migraine)  knows the answer to this one. I haven't been able to cook a meal for my family in over a week! I know to some moms, this may sound like a vacation, and for a day or two, I wouldn't mind it, or at my choosing, I wouldn't mind it. But, that's the kicker, I have no choice. I have no control. I'm the Mama. I'm supposed to be in charge. I pride myself on cooking delicious, wholesome meals for my family, and whenever The Migraine decides to take over, all my plans go out the window, and I am grounded--sent to my room, in pain, without supper, so to speak. So not fair! Yesterday, I do have to say that I probably could have pulled off dinner but the hubby wanted Aurelio's pizza for his birthday. This was the first day I was physically able to cook since the 4th!

We Meet Again

I managed to make it till about 4 this afternoon before the migraine hit, no aura this time. It just hit me out of nowhere. On the 1-10 pain scale, 10 being the worst pain ever, this one is only about a 5-6, so not too bad. Bad enough to make it difficult to deal with kids and complete my necessary duties, however, especially with the accompanying symptoms. Sensitivity to light and sound, ringing in the ears, nausea, blurred vision, vertigo and dizziness, as well as tingling limbs joined the party. Hubby brought home Maxalt for me, my old friend. I had been taking Zomig in lieu of Maxalt because it is stronger than Maxalt and I only need half a Zomig at a time, so I can make it last. And, since Maxalt and Zomig cost the same with insurance and insurance only allows nine of each a month and the Zomig I can cut in half, the Zomig is a better bargain--I am such a savvy shopper--I know! Anyway, I decided to take the Maxalt tonight since I have been taking the Zomig for about two months straight. It worked pretty well. My migraine was down to a level 2-3/10 in less than two hours, the others symptoms cleared up, too, except for the tingling limbs, especially in my feet, but I think that's the Topomax. The dizziness also remained, actually, it increased, the Maxalt will do that. The sensitivity to light and sound is always there; I have to be really careful about that. Bright lights or sharp noises will send me into a migraine in an instant!  About twenty minutes ago, I felt the migraine creeping back, so I took an Ibuprofen 800mg. That was enough to knock it back down, at least for the moment. I am feeling really tired and dizzy; hopefully, I can go to sleep soon and won't have to repeat the Maxalt.

Fish Tank Blues

I have a 20-gallon fish tank. I love it. It has beautiful little guppies in it. I breed them and sell the little guppy fry on eBay. Yes, you can sell live fish on eBay. Anyway, I love a fish tank. It's peaceful, tranquil, the gurgling sound of the bubbles, the soft light. Not with a migraine, it's not. Migraine makes you despise things you normally love, like the sun. Migraine has turned me into a vampire, I only go out at night, if at all. Anyway, yesterday afternoon, I was just about ready to start dinner. I was excited to try a new recipe, then, a migraine hit, and I was flat on my ass. I collapsed onto the couch, clutching my head, waiting for my husband to get home to give him dinner instructions so I could go lay in bed, another night lost to migraine. As I lay on the couch, I was assaulted by two things, first, the deafening noise coming from the freaking fish tank! I asked my daughter, "Is that fish tank always that loud?!" She said, looking at me kinda weird, "It's not loud, Mom." I figured she was probably right, but this thing sounded like a damn whirlpool! Second, the couch smell. It smelled very strongly of....couch! I know it sounds ridiculous! I feel absurd typing this now, but that couch smell was overwhelming! I could not lay there anymore. After instructing my 13 year old to look after her younger siblings, I retreated to my room and lay in my bed with my sleep mask on and my ear plugs in to await my husband's arrival.

Medicine Du Jour

So what am I doing now? A lot of people ask me that. "You're not teaching?? So what are you doing?"  We are so defined by our jobs in this world, aren't we? Anyway, I have applied for SS disability. I am awaiting a hearing date, should be any time now! Fingers crossed! My girls are in school and my 4-year old son is home with me during the day. I am trying to be the best mother and wife I can and taking it day by day. That's all I can do. I'm doing all I can to get better. I saw a chiropractor for a few months with limited success. I will probably give that another whirl here soon. I have a great shrink as aforementioned in a previous post. I may try acupuncture at some point and I have plans to see an herbalist within the next month or so. I keep a journal where I write down everything from what activities I did on a particular day, activities I had to give up, when the migraine hit, when it went away, meds taken, my feelings, food I ate and so forth. Many migraineurs have food triggers. Many don't. I have been on many diets (including vegetarian, gluten-free and tyramine-free) and have (and still do) kept food diaries to try to pinpoint any food triggers I might have.  The only food trigger I have been able to find is aspartame. Give me a Diet Coke, and I'll have a raging migraine within minutes!  I am on my fourth neurologist;  I even went to the Diamond Headache Clinic in Chicago, which has been referred to as the "Mecca" in migraine/headache care. Maybe I will blog more about my experience there at a later date. I will say, now, that they almost killed me! I wish I had never gone there! I stopped making monthly trips to that hell in Chicago in December and have a new, local neurologist. (In order to avoid getting sued, let me just say, that I am not a medical professional, so I cannot say with certainty that they almost killed me, nor do I believe that all of the doctors at this clinic are the devil. I know that some of the doctors there help some people. I, personally, had an awful experience there). I have tried just about every drug out there for prevention with no success. I am currently taking 150 mg of Topamax daily for prevention, though, I will probably not be taking it for very much longer for two reasons: 1.) It doesn't work. The migraines have not lessened at all since I started taking it. I am still getting migraines every single day. 2.) The side effects are too unbearable. The Topamax makes my limbs tingly and numb (this occurs with migraine already, Topamax makes it worse!); it makes me forget words or lose my train of thought (which also occurs with migraine already!); it also makes me very tired; the only "good" side effect that it makes Coke taste gross, so I've been able to give up pop. I also take Maxalt (good old Maxalt), Zomig and Ibuprofen 800mg as abortives. The Ibuprofen is used in conjunction with either the Maxalt or the Zomig, whichever the abortive du jour is. The Ibuprofen gives it the extra kick it needs to work. The Maxalt and the Zomig cannot be taken on the same day and neither one are supposed to be taken more than two or three times a week because they can cause rebound headaches--ooops! I cannot help it; I take them more than I should, I know. I try not to take the Ibuprofen as much because it can cause bleeding and ulcers, as my mother, a nurse pointed out.I had Botox treatment done in January (18 injections in my forehead and head!). It has made no difference in the migraines so far. My right eye is still droopy, though! Isn't that great?!

The Migraine-Anxiety Circle

Once I turned thirty, the migraines became chronic. They went from a few times a week to semi-daily/daily. I had to stop working. A typical migraine for me begins with an aura, sometimes, but not always, then a migraine. Migraine pain is hard to describe; it is the worst pain; I've had four children, and when the migraines are bad--they are worse than that, than giving birth (if you can even fathom that!)! For me, it is usually located on one side of the head of the other but not always. Along with the migraines, I experience nausea, vomiting, dizziness, vertigo, lack of concentration, confusion, ringing in my ears, extreme sensitivity to light and sound, tingling in my limbs,  blurred vision, sometimes, double vision or loss of vision in one eye, fatigue, moodiness, sensitivity to smells, crying jags, disorientation, and uneasiness. My migraines last from a few hours to a few days. Yeah, it sucks. It sucks really bad. I feel cheated out of life. I miss out on a lot of things, and it's just not fair. I can't work. I cannot even drive. Drive, for Goodness Sake! I am 33 years old, and I cannot even drive myself and my kids around! It can get really depressing, sometimes. I also struggle with anxiety. I have always had some trouble with anxiety. But, when the migraines got worse, so did my anxiety. I have been in the hospital almost as many times for panic attacks in the last four years as I have been for migraines! It's the anxiety of having migraines and what I am going to have to miss because of them that is driving this vicious circle! I have a really good psychiatrist that I am working with and a great support system at home, so I'll make it through. It's not easy, though. I wake up every day wondering when I'll get the migraine and what I'll have to miss that day. Like today, for example, is my husband's birthday. Will the migraine strike and keep me from making his cake?  Will I be unable to celebrate with him?  Will his birthday be ruined?

Maxalt Pause

In my 20's, the migraines progressively got worse. I couldn't just keep moving like I used to. I started to get them a few times a week instead of a times a month. I saw a neurologist. Nothing wrong with my brain. We tried several preventatives, like Depakote and Bistolic, nothing worked. I did discover Maxalt, an abortive, and that did work, so that got me through for a few more years.  I stopped trying preventatives and just popped the Maxalt whenever a migraine came along. Until they started coming more and more often and I found out that the Maxalt was causing more headaches. Groan...

The Sting

My struggled with migraines began almost, gulp, 20 years ago, when I was 14 years old. I remember being at play practice in the school gym. In between being on stage reciting lines, I was lying on the gym floor next to my friends, pressing my head against the floor, trying to get some relief from the the coolness of the hard wood. I had never felt such pain before. I had experienced headaches before but not like this. I felt dizzy, nauseous and my vision was blurry. I could not wait for practice to be over, which was saying a lot, I lived for Drama Club, in those days. My dad picked me up, and on the way home, we had to pull over, so I could throw up on the side of Hwy 30. And so it began...
After this, I would get migraines consistently about two or three times a month. I would always get dizzy and nauseous and vomit from them. My friends and my sister started calling me the Barf Queen. Sweet, huh? I took Excedrin, Ibuprofen, nothing helped. I just closed myself in a dark room and rode them out. Sometimes they lasted for hours; sometimes a day or so. I was young; I just kept moving. 

The Buzz

I know I need to explain the bees, right? If you have migraine auras, you may already know what I mean by "fuzzy red bees." It's my way of describing the clusters of blurry, red dots that I see sometimes. They plague me. These bees. They start out fuzzy and red and gently moving, pulsating slowly, then quickly, hundreds of them, they change colors, sometimes, from red to green to blue, sometimes they are all the colors, sometimes they look sparkly. Usually, these bees come first, then a full-blown scintillating scotoma follows. I can best describe this as zig-zagging, circular lines of glittering colors flashing in front of my eyes in which part of my vision is blurred or absent altogether. I imagine it is somewhat like being on psychedelic drugs, though I have never done any. Though, like Carrol (or at least like many believe him to have been), I have certainly been "down the rabbit hole," and I continue to frequent this spot. This lasts for about five minutes or so, then, the migraine hits. And with it, everything else. More on that later..
Back to the bees. My first experience with the bees occurred when I was about six of seven years old. Of course I had no idea what an aura or a migraine was at that time nor did my parents or my brother, who was babysitting me at the time of the bees' appearance. I was supposed to be going to sleep. I slept on the top bun, my little sister on the bottom. My eyes were closed and the bees appeared, hundreds of red, glittery, flashing fuzzy red bees in both eyes. I was scared. I opened my eyes, sat up and looked at my closet door. The bees were still there! How could this be? I called for my brother. I told him what I saw and that I was scared and I couldn't go to sleep. He looked at me kind of funny and told me to think of something good, and I would fall asleep. I sat stiff, looking at the closet, watching the bees, closing my eyes tight, then opening them again, each time, hoping the bees would disappear, eventually, they did. They just disappeared. I finally did fall asleep. I dreamed of my boy and girl Cabbage Patch Kids dancing in front of a little cottage on a cobblestone street. Thanks, Bro.
A migraine did not follow that night and wouldn't for several years, but the bees would visit me many more times throughout my childhood leading up to my first experience with the dreaded Migraine. I just ignored them, really. I figured it was just something everybody dealt with but didn't talk about or it had something to do with my poor eyesight. It didn't hurt, so I didn't really worry about it.