Dear Tremors,

I’ve had essential tremors, those little uncontrolled twitches in my fingers and hands, for years now. When they first started, the doctors shrugged off my concerns. They said it was just medication interaction and not to worry.

So I didn’t.

I bet the pills for these tremors aren’t covered by my insurance.

About a year ago, they came back with a vengeance, happening more frequency and in bigger spasms. Suddenly, everyone was concerned about it, and I had to get an MRI stat. The scan came back showing I had a normal migraine brain: I had bright spots where the migraine had blown holes in my blood vessels, cysts in my sinuses and another in my brain, but nothing more interesting than that. No one was worried.

But last week, the tremors got worse. My hands and fingers shake and twitch almost constantly. My arms have gotten involved, and my jaw sometimes spasms as well.

When I went to my primary care doctor to discuss the problem, things reached a crescendo. I don’t know if the stress of the office visit made it worse, or if that was just a really bad day, but I was one big twitch.

Everything was trembling: my eyes, my tongue, my arms, hands and fingers, my legs, my ankles … my doctor had trouble doing the neurological exam because I couldn’t make my limbs hold still enough to test reflexes easily.

Last November, I fell while sleep walking and hit my head. It was really bad, and the pain management doctor wanted me to go in for tests. I really hate doctors; I figured I was upright and walking in a straight line, so I was close enough to okay.

But that spot had a huge lump that took ages to subside. The left side of my head stayed numb for weeks. And I still, months later, have a lot of pain from that area. So it’s probably good someone’s finally taking a look at that area.

I also have to get a variety of blood tests and some urinalysis done. They wanted all of it done the next day — Thursday — but I had such a bad migraine, I was down for the count. So now it’s all on for tomorrow, Saturday.

I try not to think too much about what the tremors are, or what they mean. But, with the variety of symptoms, it’s hard to not wonder about Parkinson’s or fibromyalgia. Or did that fall cause some sort of brain injury? It’s too scary to contemplate such possibilities.

So for now, I won’t contemplate. I’ll stick my fingers in my ears and close my eyes.

What I don’t know can’t hurt me, right? Right?

I’ll be sticking my head in the sand, but I’ll still be,

Payne.

Dear Migraine Link Roundup,

I thought I’d try to do a weekly link roundup with a theme. Migraines are making the timing of this a little loosey-goosey; however, it is appropriate that this week’s theme is migraine news. There’s some important stuff going on, so I’ve put it in a handy-dandy list with summations for your viewing pleasure.

There’s so much about this chart that makes me want to say, “Duh.”

 

Newest Theory on the Why of Migraines

Nordic scientists say it’s not about blood vessels anymore:

“Contrary to what has previously been believed, we found that the arteries on the outside of the skull did not expand during migraine attacks,” says Amin.

“Arteries inside the skull were only slightly expanded on the side where the headache was felt, compared to the other side where no pain was felt.”

Updated Assessment of Medications to Treat Acute Migraine 

An updated assessment of the best treatments to use when a migraine attack occurs was recently published, forming the basis of the new American Headache Society treatment guidelines.

Neurology Then and Now: How our understanding of five common neurologic conditions has changed in 30 years. From Neurology Now, December/January, 2014. Volume 10(6), p 32–35

In a small section, the author looks at how migraines have been treated over the past 30 years. Once treated simply as a pain disorder to our current understanding of the “sensitive brain,” and genetic testing, she explains that migraine treatment is now focused on treating a “constellation of diseases.”

New Treatment for Migraines

This Time magazine article focuses on a new study of a lidocaine treatment used for chronic migraine sufferers that can offer prolonged relief.

10 Secrets of Successful Chronic Migraineurs 

The secret to surviving with chronic, debilitating migraines is to accept that the life you had is gone, and to build a new life. Impossible? No, but hard, yes. Check out the other secrets to finding a happy life with chronic, daily migraines.

New Painkiller is Coming

 Because stronger opiods are always the answer, there’s a new one coming. It’s called Zohydro, and it’s super-dooper-ooper addictive.

New Study Rates Migraine Medications

This study was surprising; some standard migraine drugs were rated as less helpful, while others (combination medications) rose to the top of the list.

NPR’s KERA Think Show: Paying Mind to Mental Health podcast 

Lots of migraineurs suffer from depression and other mental illnesses. This podcast focuses on how we think about mental illness and how we can better help those who have mental illness.

And now you all have my linkety love,

Payne.

P.S. If you want to talk about anything up there that interests you, or if you don’t want to read the whole thing but want to ask me questions, make a comment and I’ll do my best to answer.

Dear Things You Don’t Know About Migraines,

I am not a doctor. My advice and information are gathered from 18 years of having severe, chronic daily migraines with a degenerative neurological component and a hypersensitive brain. The two latter diagnoses were caused by the first. I have seen many neurologists, several pain management doctors, some migraines specialists, and a whole mess of other practitioners. I am happy to answer questions and point others to information I have discovered. 

The street price of the pills in my purse must be … well, a quick internet search tells me Dilaudad sells for $10 a pill. And my mother thought I didn’t have a retirement plan.

For migraines, there’s so much information and misinformation out there. Even neurologists are handing out crap advice. I offer my own stories, things I’ve learned through touching the hot stove so you, perhaps, won’t have to get burned. Maybe you can offer your own goods and bads as well. Keep in mind I’m sort of the worst case scenario of migraines.

A friend of mine, a delightful Cajun named Rocky who groomed my dog, was told he could take Imitrex every day, several times a day, to treat his intractable migraines. Well, I’d been told for years, by a neurologists who specialize in migraine care, that doing so would give me a stroke or an aneurysm. That doctor hammered it into my head. Too many and my brain would explode. I took those things with extreme caution. And when my friend vanished for a few months, I was so worried his brain turned into pulp and he’d died alone.

My doctor was wrong. He hadn’t kept up with current research, and was giving me information based on two specific cases he’d been a part of. They’d traumatized him, and they were the basis of his treatment plan for migraine patients. But he was wrong, and it’s messed up how I take triptans for years.

Having a good pain management doctor will change your life. They can prescribe narcotics, if necessary. Their whole goal is to prevent you from feeling pain. And they know what they’re doing. If you’re having more than, say, four migraines a month, and especially if that number is increasing, think about seeing a pain management specialist. 

There are herbal remedies that can help. You must talk to your doctor about combining them with your prescriptions. Here are the ones I’ve tried, listed in the order of what helped me to what did not. However, this stuff is very personal and works very differently on different people.

  • Butterbur
  • CoQ10
  • Riboflavin
  • Magnesium
    • Note: I take the above in a supplement called “Migravent” that I buy from Amazon. I take three a day, as my doctor recommended, and it’s helped.
  • Folic Acid
  • Feverfew

Migraines cause muscle problems in our necks and shoulders, not the other way around. But we still have to deal with those problems, because the tightened muscles can then give us tension headaches which can kick off a migraine. Getting a massage regularly can be of great benefit. And they are not as expensive as you think. Call around; my massage therapist charges $50 each for a package of four, and I see her once a week. Her healing touch, positive attitude, and shining soul (I know, I’m not about that, but with her, you can’t not see it.) have helped me.

I have found it freeing to adopt this as my … mantra? no. position? maybe. Something. Anyway: “I will do everything I can, then I will let the rest go.” I have told the people around me that I will do everything I am able, then I will stop. It’s taken a lot of the anger out of our interactions. They no longer think I’m slacking or not trying. They know if I could do it, I would be doing it.

Ask for help. We’re conditioned in our American society to not ask for help, and not take help when it’s offered. It’s part of that rugged American individualism. And it almost killed me. For those of us who are never able to ask, remember that letting someone help you is a gift you give them. They see us hurting, they want so badly for the pain to stop, for magic to make it go away, for anything … and letting them help is a great way to fulfill that need.

Sorry lady, I’m gonna need that bouquet of yours. I’ve got a migraine, and I’m going to eat it during the wedding ceremony. I hope everyone else brought snacks; I’m not in a sharing mood. (Isn’t Feverfew pretty?)

I’m tired, and itchy from the hydromorphone. So I’ll go finish the book that the Sassy Little Book Fairy made me purchase in hardcover. Don’t go read her blog unless you want to get sucked into some good books. She’s like a drug pusher. You have been warned.

I’ll be reading, but I’ll still be

Payne.

Dear 10 Things I Hate About You,

Oh, I hate you. I despise you. I hate you …

Such a great soundtrack. I want you to want me … Wait, there’s a TV show? What has happened to our world? Ruin! Rack and Ruin! Bring on the fucking zombies! Nothing is sacred!

1. When people use Migraine and Headache interchangeably.

2. When my favorite authors write things like, “oh, this situation is so terrible, it’s giving this character a migraine.”

3. When commercials for Excedrin Migraine or similar drugs claim they can cure a real migraine.

4. When minor emergency room doctors, being seen for a sinus infection or such minor emergency, take a look at my prescription list and say things like, “Oh, you shouldn’t be on that many drugs. That’s bad.” And “Well, I’m not giving you any painkillers for this terrible sprained ankle; look at what you’re already taking!”

5. When, at work at my last job, as a migraine hit and I tried to leave, co-workers, those lovely helpful people, would say, “but there’s a quiet room, you can just go lay down for awhile and come back to work.”

6. When I get looks for using my disabled hang-tag for parking. When I felt like I shouldn’t type that sentence because of what others might say here about this very thing.

7. When I can’t look at a website because it has flickering images, or have to close my eyes while watching Scandal because of that camera flashing thing they do. When my iPhone weather app triggers a migraine because it has a lightning strike to show it’s a stormy day.

8. When I can’t shop at the Sephora store because of all the scents. When I have to dash through the department store entrance because of the perfume counters. When that woman gets on the elevator after dousing herself in eau du blech, and I leave in pain. When I have to leave a line because a man who was smoking cigarettes is standing behind me.

9. When my system gets so hypersensitive that voices sound like shouts, that small crowds cause panic. When my skin and long muscles begin to hurt to the touch. When my brain overloads and has to be shut down.

10. When I waited too long to tell someone how they impacted my life in such a negative manner that I feel they helped cause these migraines, but I waited too long. And now they’re dead.

Dear Stormy Weather,

There are storms brewing. The air is heavy, clouds are swirling, humidity’s rising. Air pressure is changing. The sky is dark and menacing.

“Look, Pa! It’s the gate to hell!” “I told yer Ma I didn’t lose it in the couch cushions!”

And my head hurts.

Storm migraines are my least favorite. Where I live, we have an active spring storm season, so I have a lot of these, and they can last for days as a pressure system sits atop us, fussing and spitting. We might not get a drop, but I’ve still got the migraine.

I swear storm migraines hurt differently than the others. They hurt from the outside in, as if they’re trying to carve and pound their way into my skull.

I’ve been taking Dilaudad/Hydromorphone all day, and it takes the edge off for awhile. I can take more and be completely stoned and pain free, but it doesn’t hurt enough to go that route, and I hate, hate, hate that feeling. If it gets bad enough tonight, I can take a Thorazine to knock me out, but then I’ll lose half the day tomorrow, which might not be too bad, since those storms, they’re still a’comin.

These are the crappy choices we make. Is it bad enough now to take a painkiller? We only get so many a month, so we’ve got to dole them out so carefully. Did I wait too long to take the pills? If I did, I’ll have to take more to compensate for that, damnit. Did I take them too soon, and the migraine just never got that bad? Or was it the early painkiller that prevented it from being a bastard of a headache?

I’ve asked doctors over and over and over: When should I take the pills? The only real, solid answer I got was the scariest. She said I should take them early and in a large dose to cut the migraine off at the pass.

It’s a good idea in theory. But then I’ve taken a large dose of painkillers. So I’m wiped out, my drug supply for the month has taken a hit, and I flirt with rebound headaches and addiction.

If these aren't tic-tacs, then this young lady is not  making smart life choices.

If these aren’t tic-tacs, then this young lady is not making smart life choices.

There’s no way to win.

If anyone has a magic answer on when to take the painkillers, I’d love to hear it. I’ve had severe migraines for 18 years, and I have no good answers and still fly by the seat of my pants.

Anyway, I’m still

Payne.

Dear A+ for Participating,

I’ve had a nasty run of pain-filled days lately. It’s taken hands-full of pain killers to get out of bed and dressed, down the stairs and into the nest on the couch by the dog. This is where I spend my days: curled up in the nest, hand in the dog’s fur, involved in the interwebz as much as the pain allows.

What my fantasy nest of blankets on the couch looks like (and smells like). The reality is sadly less twinkly.

Sometimes just barely watching something, or reading blogs, or adding my own to the discussion boards. The best days of late have been creating my own content, making my own imprint on the vast, glorious, terrible, infinite web.

Pain takes so much away from us. Chronic pain strips away jobs, friends, family, so, so much. It strips away our ability to participate in the world.

It took me so long to realize what I was losing to the migraines. When the pain management doctor finally said stop, that the job at the Texas Society of CPAs (TSCPA) would kill me within two months if I didn’t take a break, it was a miracle to me. I had permission to let go and rest.

But leaving that job had consequences. I’d worked seven jobs in 10 years, was fired from four of them, and left two of them because of my migraines. When you leave in disgrace, you don’t get a good reference, you steal a lot of office supplies, and office friendships wither and die very quickly. When I left TSCPA, I left the few friends I had there. I lost the sense of accomplishment I had. I hated the company with a blind passion; I still do. But I loved the job I did, and I was really good at it.

I lost the joy I had at turning a pile of boring and sometimes incomprehensible papers into a magazine, of designing and laying out publications, of selecting images. I lost my sense of accomplishment at taking nothing much and turning it into a magazine, a newsletter, business cards, handouts, so much more.

I lost my sense of participating in something bigger than I was.

I always loved the monkey bars the best. I was a daredevil. If my parents know half the stunts we pulled as kids … they probably did worse while sucking on lead paint, I suppose. Man, kids today are wussies.

I think that’s a lot of what chronic pain does to us. We lose our ability to participate. And if we boil that down to a basic, playground analogy, if you’re the kid who always says no when asked to play, everyone stops asking. Doesn’t matter that we can’t climb the steps to the slide. Doesn’t matter that the merry-go-round will make us vomit. Doesn’t matter that muscular problems keep the swings from swinging. If we say no too many times, no one will ask.

So I, we, have to find ways to participate.

I’ve always loved writing; it was one of my first loves and my first real career. I wrote for newspapers. Newbie stuff: obituaries, weather, traffic, county fair, rodeo, community meetings. Bigger responsibilities: city council, plane crashes, kidnappings, murders. Finally the things I loved so much: feature stories, columns.

Starting this column is my way of saying yes, I’d like to play, I want to participate. Writing is revisiting an old friend and love. The joy of picking this word or that, of rereading what I’ve written to see what happens when I change punctuation, when I tighten up the writing or fix the punctuation. Finding images that speak to what I’m trying to say, funny captions to add spice. I’m finding so much joy in the art of crafting the blog.

But my blog doesn’t every have to be anything beyond me sending my thoughts, created through my love of words and depth of experience, into the wide ocean of the world in all the empty pill bottles scattered around me. It has to be, it is, my participation.

And I thought I was being creative in my reuse of empty pill bottles. I however, did not create a “house of worship” out of mine. When you think about it, our dependence on pain killers, the lack of the medical industry’s ability to create other ways to manage our pain … it’s pretty damn creative. More pill bottle art to come.

But when my blog becomes something more, when someone opens that link, that bottle, it becomes their own act of participation. Passive participation, sure, to start. Then, click a star button, type a response. Talk about an idea. Write their own blog. Agree. Disagree.

So while it sucks, to have so many bad pain days in a row, to miss blogging for so long, it’s really good to be back. It’s good to put my hazy, drugged thoughts into words, polish them up, and send them out into the world in my own act of defiance against the chronic pain. I know this is a cycle I’ll repeat again and again. I can live with that by participating.

Until then, I remain,

Payne.

Dear Trading Days,

I have been wandering around the house growling like a grizzly bear, trying to find the right ice packs, the right towel to wrap them in, the right ace bandage to wrap around all of that. All to go around my neck, where my second pain management doctor gave me two trigger point injections, one on each side of my neck.

When asked about his migraine, the bear said, “Grr.” Then he ate the reporter.

For me, these have been helpful. They’re expensive. Only a few pain management doctors will do trigger point injections, and almost none of those will take Medicare. There’s no assurance the injections will work, or that they will continue to work. Just because they worked last time does not mean they will work next time.

As Dr. Shots finished today he said, “These are already swelling. You might want to put some ice on them.” He’s a nice doctor, and I like him a lot, but he’s prone to understatement. I have mump-like lumps, and my neck is swollen and sore from the injections.

For me, this had been an exciting revelation over the last three or four years: migraines can become so bad that they cause the muscles in the neck to clamp down hard enough to cause deafness, blindness, fainting spells.

This is exactly what I look like when I have a migraine. Exactly.

The shots go in my neck, below each ear, making those seized-up muscles let go enough, hopefully, that I will be able to hear clearly. The injections are painful going in, so I’m relieved we’re only doing two locations now. In the beginning, Dr. Shots was doing a dozen little ones. After that, each point swells, sometimes leaves hickey-like bruises, and can hurt like a bitch. The muscle spasms, however, are the worst of it. Muscles that have frozen into that rigid state for a dozen years or more react badly to having a miniscule dose of “let-go” potion pushed into them. Those muscles respond with incessant spasms, cramping pain, and ongoing twitching. Let’s call all of this Rough Fix A. 

I hope the pain of the injections, of the swelling, of the muscle spasms, will all be worth it as the trigger point injections do their job. When all goes as planned, I can hear out of both ears. I don’t have to shake my head at people, point to my ear and say, “I’m deaf, can you repeat that, and louder, please?” If it all works, the muscles in my neck relax, and I can rest easier. My therapeutic massage can go deeper and work better. My range of motion is greater. And best of all, if the injections work, I think my constant, permanent, grinding, aching, stabbing migraines are a little better. Let’s call the whole of this Possible Solution B. 

We’ll call this Stupid Shit C. This is the sort of crap sold to “cure migraines.” Who buys it, you ask? People who love someone who has migraines. My fairy godmother buys me a ton of this shit, especially if it’s sold on that home shopping network, QVC. She wants me to feel better, wants to help. And, at 3 a.m. this sounds like a genius idea. When people give you shit like this, the only thing to do is to say, “Thank you. I’ll ask my neurologist/pain management doctor about it. I was really kind of you to think of me.” If the giver inquires later, you say, “My doctor said I shouldn’t do anything outside what she prescribes, but it was so very kind of you to think of me.”

Chronic pain sufferers, we have to make trade-offs. I’m willing to go through all of Rough Fix A to get to the potential calm waters of Possible Solution B. Chronic pain sufferers have to negotiate their whole lives. Will I do so I can have B?

Will I go through this horrible, painful treatment so I can have a vacation with my family? Will I give up going out with my friends any night this week so I can make a presentation on Friday for my career? Will I take antidepressants so my wife will like me better, even though it will destroy our sex life?

Will I take this pain pill now, when I need it, or will I wait to take it later because someone else needs me to be/do/have/say something for them? 

I don’t have the answers for any of you, but I remain your

Payne.