Do you live in my head?

There's a migraine meme that goes around pinterest & instagram that says something like "I want to live, not just survive". Sorry, meme writer, but I'm not even sure this is surviving. Obviously, I'm walking & talking so I'm clearly surviving but inside my head, there's not much movement, I promise. I've decided living in my head is basically like living in The Fire Swamp.

What are the three perils of the fire swamp? Everyone knows this - the flame spurt, lightning sand & Rodents of Unusual Size. Let's start with R.O.U.S. Baby rodents are tiny noises like the sounds that TVs & normal people make. To the rest of you baby rodents are just cute little hamsters or guinea pigs. People pet them & keep them as pets. You know the sound they make. Tap, tap, tap, tippity tap in my brain. Teenage ROUSes are when people get riled up & get loud or turn up their music. Drum, drum, drumming in my brain.  Full grown R.O.U.Ses are places that are loud & full of other stimuli - I know what you're thinking right now - you mean, like movie theaters & concerts. Well, yes. But mostly I mean Red Robin. I haven't bothered with a movie in months. But it isn't just noise - it is lights, smells, movement. It all works into a giant swirling Rodent of Unusual Size inside my brain & it and all of its friends run around on their Unusual sized feet - pounding, pounding, pounding. So much pounding that I can't see, think, hear or feel anything but that.

Flame spurts. Well, those are easy! There is a popping sound that warns of their coming so they can easily be avoided, right? Oh, totally! I mean it is so hard to miss the popping sound what with all of the pounding that's going on by the Rodents of Unusal Size. If I catch the popping sound, and by some random miracle the medications actually work, that's when I've used the flame against the Rodents & set them back to baby size. Tiny feet pounding until they grow. And they always grow.

And the worst peril of all, the one that I can't seem to keep my feet out of & the one that keeps me trapped in The Fire Swamp - the Lightning Sand. If you talk to me, I hear you through the pain. I process your words through pain. If you ask me to do something, I base whether or not I think I will be in too much pain to successfully do the task. Go on a field trip with Tate? I actually like that kind of thing. Can I physically make it through a day? Maybe but the consequences for me at the end of that day and for the next day? Disaster. Do I want tickets for an event in 3 weeks? Dinner in 2 weeks? Vacation in 4 months? Head is spinning, feet are sinking faster into the sand - I cannot plan or commit to anything anymore, my brain does not allow it. I want to process thoughts. I want to make plans. I want to feel happy about things. I want to enjoy events. I want to be excited to go places. If you're reading this right now & thinking "it's just mind over matter or you just have to decide to do it or you can do more than you think" or any of those things - please don't say them outloud. Think about how hard it is to walk through sand - that's how I'm describing THINKING most of the time & moving most of the time.

Lightning sand sucks you under. There's no space for anything else & that's where I am. I try to do all of the things I need to do: the parts of me that aren't Migraine, mom-ing, wife-ing, working, aunt-ing, friend-ing. But I suck at it right now. Seriously, don't pretend. I suck at it because to do anything I have to fight the lightning sand the entire time. That's what my body feels like it is doing. And even thinking requires pushing aside sand, which is sometimes impossible.
It's dark in the Fire Swamp. I'm trying, really, I am. There are days when I feel nothing but the Rodents & the Lightning Sand pulling & it's designed to pull me all the way under. Watch for those who reside in Fire Swamps, I'm sure I'm not the only one.

Don't You Have Sunglasses You Can Wear?

I've had a moderate to severe migraine going on 8 days. It ebbs & flows-evil little monster. The problem is once a pain cycle digs in, it gets very hard to break. I did the usual things: 

Extra rest

Extra hydration

Less screens 

Less stress

Imitrex

Ice packs on my head

Ssshhhhhhhh

More imitrex 

Repeat

Probably other stuff I have forgotten

By Friday, I decided that I did not want to go into the weekend with the pain. My DR had said that if 3 days had gone by with a headache that wouldn't go away, I should come in. So I did. 

After being put in a bright room & requesting the lights be turned down, my dr came in & ordered a toradol shot. I told him it wouldn't do anything. It never does. Shot was given. 20 min, 30 min, nothing. I went back. The medical assistant was sent out to tell me that it could take up to an hour to feel an effect. (Really? How weird. You're the same person that told my husband 15-20 min 20 min ago.) ok, so an hour was basically 15 min away by then & I felt EXACTLY  the same. I was also sitting in a fully lit and fully full of people waiting room. The medical assistant went away & an RN came out. She had me go back into a very, very bright room while talking to me in a loud voice. I was answering in a whisper. I requested that she turn down the light. She said--and I am not making this up--"don't you have sunglasses you can put on?" WHAT?! "no", in my whispering voice "I don't but that light turns off". She then proceeded to inform

me that I had to wait in the waiting room for 2 full hours from the time of the toradol shot before my dr would do anything else. Or, she suggested, in her not inside voice, I could go home, lay down in a dark, quiet room and see if that might help. I started to cry then as I pointed out that I had tried that (ummm for 15 years) and had already taken max doses of imitrex. Sunglasses.....

My dr had her give me a DHEA shot which made me violently sick to my stomach but did nothing to my head. I was then told that if I wanted any other help I could go to the emergency room. 

Review: I went to the dr on day 5 of a migraine as he suggested. He tried 2 things that didn't work but only spoke to me once for about 15 seconds of my 3.5 hour visit. He then decided it made sense to send me to be triaged at the ER where I would be at the back of every line, there for hours, spend hundreds of dollars & I'm not even sure what they would do that he couldn't. He's capable of writing a prescription for Vicodin the same as an ER doc. Ergh. 

I Know You Just Want to Smell Nice But...

Your trying to smell nice is killing me. Probably not literally killing me but it is making it exceedingly hard to function. 

7-11 lady- I was just trying to get my kid a Gatorade. The perfume surrounding you that I had to wade through in order to get it sent me reeling. At least I could walk away. 

Olive Garden manager - I dragged myself out of the house as it was so that my husband could have the lasagna he'd been craving. It was Father's Day weekend after all. I'm sure it is in your job description to do table side checks on customers. Should they include the overpowering scent of cologne that lingers long after you're gone? 

Women who convene in group settings- please take pity on us. When you're putting on your scents, consider the medley that happens when we are all in a room together. 

Essential oil users - for some of us scent sensitive folks, the same consequences happen whether the smells are perfumes, lotions, oils, etc. 

Here's what happens to me: the most common reaction is an instant and intense sore throat usually followed by a headache or a worsening of an existing headache. Certain scents make it feel like I can't catch my breath though not in an emergency way, just a weird annoying way. That comes with more of a tickle in my throat that won't go away. And a headache. Migraines are curious things and triggers aren't always 100% certain. I can say that I have a physical reaction to heavy scents 100% of the time. 

Usually the solution for me is easy - I walk away. I ask for another table. I leave the room. But for those sometimes when I'd like to stay in the room, and I know that other people who are similarly afflicted would also, I would just like people to be aware that a little goes a long way. Especially when a lot of people are in one room. 

My Face Hurts & I'm Mad

There are times when my glasses hurt my face. It's not their fault & they fit me the way they should. Remember, Dr #1 had me check them four hundred seventy-seven times. They do, by necessity, have to sit on my face and my face lives on my head. And my stupid head has hurt about 80% of the month of June. So far. We could break the streak & change the percentage, my head & I, but we do not have that friendly of a relationship. 

Also by necessity I took a shower today and washed my hair. Not liking the feel of wet hair on me while I'm trying to get dry & put on dry clothing, I put my hair up in a towel. My head did not appreciate this and launched a full frontal retaliation that had me sitting on the pile of clean clothes that is my closet floor. (Yes, Lil Miss Azzi, my darling 6 yr old niece, I understand that your mama folds her clothes.) 

I'm envious of people who can regularly wear glasses and towels on their heads. Heads should not retaliate against such simple things - I've never even given it a hangover the ungrateful wretch. AND I have been hydrating and hydrating and hydrating to make sure the topamax doesn't do blah blah blah to my blah blah blah blahs. 

100 mg of imitrex brought the 8 on the pain scale to a 4 & that's pretty normal. Plus it's all I can take for 3 days. I'd like today to be over now & I'd like to say a big F U I freaking hate you right now to whatever unknown mechanism in the brain causes migraines. F U. 

Well, you're a quandary, aren't you?

Let's just get this out of the way right now. Yes, yes, I am. I am not the kind of patient that comes into the doctor's office, says three simple sentences, gets a few sentences of feedback and goes on her merry way - problem solved. I also am not the kind of patient that is going to just hear what a doctor says and think of it as I would scripture. (Did you hear? Doctors are people, too. Just like you and me.) It seems to annoy some of those with letters after their names but I want them to speak to me like I understand what they're saying - and if I have a question, I want them to answer it.

Twice in my adult life I've had chronic hives that defied explanation. At least I had doctors that looked for explanations both times. I haven't been as lucky in my current chronic health situation. The first hive episode lasted just short of a year from what I can recall. It was before I was pregnant with Tanner and he's 21. The allergist I saw did tons of tests and was so perplexed. The hives just wouldn't go away. Misery. The second hive episode was worse. It lasted longer. Approximately from the time I weaned Kaleb until I got pregnant with Tate. So 4-ish years of daily hives. Again, tests. Again, perplexed doctors. It was during this time that I was first diagnosed with migraines. It was also during this time that I first started discussing autoimmune diseases with doctors. The most obvious issue was with my thyroid. According to my doctor, my immune system was attacking my thyroid and the antibody that they were testing showed up at 600 times the normal level. "I've never seen anything like it." Not the last time I would hear that phrase. 

I get hives sometimes. My immune system is still attacking my poor thyroid though not at such a ridiculous level. I think that there is probably some correlation to my migraines. Currently, however, I can't even get my doctor to agree that my thyroid requires treatment so I'm kind of stuck on that issue. 

Back to the migraines: The first treatment plan for someone with migraines is usually a triptan. Imitrex, maxalt, etc. I was given a rx for imitrex first I think. I can take it 3 days a week. Normal people don't have a migraine every day, they have one once a month or once in a blue moon so this restriction isn't a problem. If you have one EVERY SINGLE DAY - it's a problem. I asked Dr #1 (I'm going to have to label these people because I start switching soon.) about this problem several times. His answers were vague and not helpful. Looking back, I think it is because he didn't believe that I had pain as frequently as I was saying. His other suggestions were: loosen my glasses because they were too tight, drink more water, drink less water, loosen my glasses because they were too tight, go to the eye doctor to check my prescription (I informed him several times it was a brand new rx), drink more water. 

Following all of this, Dr #1 prescribed a medication usually used to treat high blood pressure which is sometimes used to prevent migraines. Since no one really knows what causes migraines, no one really knows why it works - being a chronic migraineur is like participating in a giant drug trial. Since my blood pressure is low already, I wondered if this was a good idea but he said we would watch it. 90/60 is what it was running most of the time. When I was in the ER once & it was 80/50, there were some very concerned nurses. Dr #1 made a couple of crucial mistakes. One, he prescribed an increased dose of a triptan for me while I was on this med that made the pharmacist's head almost explode. She was so upset by the potential drug interaction, she was speechless at first when I came up for the consult. Two, I told him that I continued to have pain every day & he suggested a few separate times that we increase the dose of the blood pressure med. UMMMM, NO! I think 80/50 is low enough. I reminded him how low my blood pressure was & he would mumble "oh, oh, ya...maybe not a good idea...." but in another conversation or email, suggest it AGAIN. Excuse me, sir, ARE YOU PAYING ATTENTION AT ALL? I'm trying to survive here. 

Did I say a couple of crucial mistakes? There's actually more than a couple because there's the time he diagnosed me with a chronic condition but didn't tell me and the time I yelled at him on the phone.... tune in next time for Laura loses her temper.... it actually doesn't happen as often as you think. 

I have migraines...part one of one bizillion and three

June is migraine awareness month. Guess what? I have migraines. Chronic freaking migraines. All of the time, never ending, who knows why or when migraines. When I read about migraines, I find out all kinds of interesting things. As with many things, chronic migraines are extremely isolating. I wasn't always a hermit. I'm not naturally a shut in. So when I read things about other people with the same crazy, jacked up, life altering weirdness that I have, I at least know that other people have become shut ins because of this crap. I'm not the only weak one who can't just put on her big girl panties and get going. Misery loving company and all of that.

I assume that people all know all about migraines. I've answered a few questions lately that seem to refute that assumption. Because June is about migraine awareness & because there are many misconceptions out there, I am going to attempt to add my story. Given the factors that work against me - you know, the migraines, we'll see how that works.

How long have I had migraines? I've had headaches for as long as I can remember.  Because I don't always have the typical migraine, I'm not sure when they started. I'm positive that I've had them for at least 15 years. This episode has lasted almost a year. I have had very few pain free days in that time. I have days that are less painful than others. There are days that I can't think, read, look at light or breathe without pain. And there are the moments that we all dread. The onset of the pain that makes you think that it would be ok to die to make it stop. Don't forget all of the other cool things that come with them: aura, nausea, sensitivity to sound & light. I had to stop driving on the way to Tate's Christmas program because the yellow line in the middle of the road turned into a glowing red line. That was something extra special. Usually I just have a narrowing of my visual field.

The last several months have been especially difficult. The daily preventative I had been taking for years just wasn't working. I also was noticing an increase in symptoms other than pain, mostly visual. I've been to a few doctors and tried different medications. I've tried "alternative" treatments. I'm still trying. I've yelled at, cursed at and cried at doctors. I'm still super pissed off at one of them & distrustful of another. I know I have to deal with it because my pain level right now is about a 5 but I mostly just want to stick my head under my pillow because I am so TIRED. Bone deep tired all of the time. The doctor I cursed at told me it's because chronic pain is exhausting on the body. But he didn't really have a solution for the pain. I bet you can't guess what drove me to scream and cuss at him. Oh, and wait until I get to the side effects of the medications I am taking. My big toe is tingling in anticipation.

This blog post has taken me so much longer than it should have. It has been interrupted by an ice pack on my head and slowed as only topamax can slow down someone's brain.

Migraines....they're not just headaches & I wish excedrin would stop saying that they are.