March Migraine Carnival

The March Migraine Carnival has been posted at Pain Camp, focusing My Migraine Headache Toolkit.

Go check them all out!

March Migraine Carnival - My Migraine Toolkit

The Migraine Carnival prompt: Tell us about your favorite tool(s) for coping with the challenges of living with migraine or another headache disorder.

When I first I first think of a migraine toolkit, I think that mine is mostly mental these days, although there are a few very real and physical items in my basket. The more I think about it, the more balanced in physical and mental it becomes. So what are some of the items?

My Physical Toolkit -

1. I'll get the most obvious out of the way first: Medications. This is actually not as a big part of my migraine toolkit as you might think. Part of that is because, when I was in middle school and just beginning with status migranous, I took so many OTC painkillers that I now get rebounds from all the basics, save Naproxen Sodium (Aleve). So painkillers don't really hit the spot with me anymore. In fact, I don't take many abortive/relieving medications in general.

2. The next that comes to mind is the most important: my Laptop/Internet. I got my first personal laptop in 9th grade when I was getting such that I couldn't get off the couch even enough to sit at the desk to do my homework for weeks and weeks at a time. I had been able to fudge it when I was in mid-school, but now I was a freshman in high school, so my parents got me a laptop for homework.
  Well, it started out that way, but pretty soon I was getting online with it as I hadn't enough brain for the homework I was supposed to be doing. I could, however, start to network and find out that I wasn't the total lone, freak of nature when it came to chronic migraines that I had thought I was before then. I made friends with some wonderful people who helped me learn how to smile despite, or rather, through the pain. I'm friends with some of those people still, and we've watched each others' conditions shift and change, but our friendships are solid because they were forged with something so basic as a desire to survive.
  Some of the things that my laptops and the Internet have helped me with are key in the next section.

My Digital Toolkit - 

1. The Spoon Theory was one thing for which I will always be indebted to the Internet and whomever it was who pointed me in it's direction. When I went to ButYouDontLookSick.com for the first time and clicked on the Spoon Theory's link, I found I was suddenly finding a new way to look at myself and my life. It was a revelation I'll not forget anytime soon. The "spoons" gave me something I could use to communicate with the rest of the world. I've shared Spoon Theory with many sufferers of chronic pain since then, and it's made me pleased that I can help them get the help from Christine's Theory that I did.
  I actually got a planned for years, and finally got a small spoon tattooed just behind my right ear, as a reminder that, on my worst part of my body, I'll still always have another spoon to draw strength from.

2. Another thing in my digital Toolkit I've already mentioned, but I'll bring up again. Friends, most of  The moral support that they give me is just incredible and I honestly do not think I could have gotten as far as I have without them. And I know that friendship isn't a one-way street; it takes two. I do my best to treat everybody as on as an equal footing and level of understanding as possible, because I know that I don't want to be judged by any physical part of me, but rather "the content of my character." Thus I get to know many people in a way that others don't, and I feel all the luckier for it. I've learned so much, and, in my turn, tried to help as much as possible/appropriate to help, cheer on, or just be there and listen to those I come across.
  Knowing that I have the capability, and have utilized that capability to make the world a little more tolerable or even better for somebody else makes me feel better. It makes me feel like I'm contributing to the World, not as I had intended as a child, but contributing none the less.

My Mental Toolkit

1. One of the most important things in my mental toolkit comes from the years of my SE therapy. SE (Somatic Experiencing) therapy helps an individual who's been exposed to trauma, which in my case is chronic pain, learn how to deal with the activation that that trauma can cause. It's actually very much more detailed than all that, but I've never successfully been able to explain how SE works. The Somatic Experiencing website explains some of it better than I could.
  What I can tell you is that I've learned to pendulate my focus away from the pain to more neutral or even positive sensations, but not deny the existence of the pain. I tried to deny the pain for too many years, by basically shutting down my entire brain on an emotional level so that I wouldn't have to deal. It was ugly and didn't work to help, but rather made the situation much worse. That's when I got into SE therapy.

2. The way that I Listen to Music  I listen to a very wide variety of genres of music. I'll listen to Top-40, Classic Rock, Symphonic Metal, Opera, you name it. I love music and am incredibly blessed that I don't get too auditory sensitive to all sounds when I get a migraine spike. Instead, deep, driving bass and hyper-frequent sounds trigger, but middle range is fine.  I find that I can create playlists that will fit different kinds of moods or even different types of migraine pain, and I can listen to those songs and get some relief.
  Sometimes I need to listen intently to the music, and other times, it's basically white noise to block out, and, when I block out the music's sound, I succeed in blocking out some of the pain. It can work either way, depending on the type of migraine.

So those are just two of each idea of what I keep in my migraine toolkit. 

Well, all save one, because it goes in all of the categories: Books.
  There are the physical books that I read when I can. "Beach books" Mom will call them when explaining what I read to others. I can't handle books that take too terribly much thinking, but I do like to escape into worlds where people are almost guaranteed that the Good will win a happy ending. Sometimes a happy ending is called for when times get thick in real life.
  Then there are the mental  books. The ones that I start to, or do try and write. I loved writing when I was younger. English was my favorite subject until I reached Great Books and Humanities, and then it was a draw. Keeping myself thinking about how a book could be written, when I have the spoons enough to "brain" like that, make me feel like I'm still a part of that person that I had been before the migraines overwhelmed me.
  Lastly, there's my digital book. It's the best way I can describe it, although it's also physical. I'm talking about My Secret's website for the children's book that I wrote. I've tried very hard to make it a good website, and a good book, for kids with chronic pain who are struggling to learn how to deal. Knowing that I've put it out there, and that I've actually got a couple of people contacting me, saying that it had helped them/their child... it makes me feel that my childhood of feeling alone and freakish might have been worth it if I can make another NOT feel that way.


There, now you have some idea of what I keep around me in my toolkit/s to deal with the migraines.

Quantum in me fuit,
~Gretchen

My Scariest Migraine

My scariest migraine ever happened not that long ago, on September 25. I know because I wrote a short entry about it in my journal the next day:

Sept. 26, 2012 - I lost the ability to control my body. Even tho I was aware of sounds around me, and I could identify them, I could show no response or act in any way physical. 

So that's the short version. Here's the slightly longer, more descriptive version of what happened leading up to and on that day.

9/24/12 at 3:08 pm - Still really not-putting-it-together in the brain department. If I were Juli, I'd say I was having "chemo brain", but that's not possible. So I guess it's just good ol' Migraine Brain and I'm getting so g-ddamm used to the pain that I don't notice it the way that I used to. That scares me. The extra caffeine isn't helping, and might actually be making me worse, so I don't know what to do.

The migraine spike started in full force during the latter half of the afternoon of Sept. 24th, 2012. I'd been feeling slightly "off" for the second half of the 22nd, and all of the 23rd and 24th, which, after the pain hit, I realized had been a prodromal like I'd never experienced before. Usually, if I notice the lead-up to the pain spike, it's minutes before the occurrence, not days. 

So, when I was body slammed with this level 9/10 pain spike, there was nothing I could do but take the pain medicine I'm only allowed to take in drastic circumstances and curl up on the couch in the fetal position and cry.

9/24/12 at 7:42pm: start dissociating at table. Mom get and give. About 4 hours between doses. 

Then the day of the actual Scariest Migraine arrived.

9/25/12 at 7:05 am: already starting to get the cold shakes & dissociation.

9/25/12 at 2:22 pm: I lasted 7 hours, but need more [pain meds]

That's the end of the journal entries that I was able to post, chronicling what was happening, because I lost my ability to function completely. 

I remember, as I started to dissociate from my body, that I needed to get help. So I called my doctor, who said she'd call me back with instructions as to what to do (IE what medications I could still take to try and make things not get worse) as soon as she finished with her current patient. OK, fine. 

I then closed my eyes and tried not to cry from the pain.

My consciousness at this point was so completely overwhelmed with pain that had I been lucid, I would have finally called it a 10/10 migraine. That's something that I've never done before because I've always said, "It could have been worse." So, having had enough of the pain, my body/consciousness connection was severed. The severance of the connection was so complete that, as far as I was concerned there was no body. There was pain, and there was Gretchen. But there was no vessel for the pain, simply all encompassing pain. 

I heard my cell phone ringing with the ringtone that told me that my doctor was returning my SOS call.
I knew that I had to answer the phone to get help.
The phone, I consciously knew, was already in my hand. 

I couldn't answer it. I had no control over the body that was holding the phone. Instead, the body just lay there on the couch, useless. My consciousness heard the ringing end, and then the beep of a voicemail being received. But I couldn't do anything. I was trapped in the very essence of pain.

I prayed that my doctor, who knew how close I was to dissociating, and that I was home alone, would call 911 and they could come and get my body to work again. 

Instead, and I don't know how long it was later, Mom arrived home. I could here her come into the den where I was curled up on the couch. I could hear her say my name quietly. I wanted to cry. I wanted to ask for help. I wanted my body back, even if it meant more pain. Instead, for the next two and a half hours, my body lay there while my consciousness tried to force it and my body to join; to work again. 

I could hear my mom and my grandfather watching TV and talking in the other room, but I couldn't call or cry out and ask for help. There was no voice to cry with. Only pain and helplessness.

I was so scared for those two and a half hours. I didn't know what was going on except I hurt and nothing was working. I didn't know how or if I could fix it. If I could go back. I wondered if I'd lost my mind. I didn't know if that would be a good or bad thing at this point.

Finally, I somehow gathered all the strength that I could and  SHOVED with every bit of fear based adrenalin focus I had, forcing my consciousness to merge with my body. And it worked. 

I screamed as every nerve in my body came back online. It was almost as bad as the sea of migraine pain  in which I had been suspended for the past several hours. Mom came running in, and, slowly, she helped in integrate my mind and body again.

*****************

After this, the migraine slowly dissipated until it was down to a manageable  8/10. I was able to talk to my doctor later that night, and then the next day in an emergency appointment.

The thing that scares me the most is, other than the pain, we don't know what caused it; we don't really know how I came back, and we don't know if or when it will happen again.

Depression and Migraine

October is Depression Awareness Month. This had escaped my notice in past years, and I feel kind of guilty about that. After all, depression and migraine have a high co-morbidity rate. This is only natural for a couple of reasons:

1: There are different kinds of depression. I myself have had a few of them. The first that I had was Depression Secondary to Migraine. IE the pain from the migraine, and the migraine lifestyle were making me clinically depressed on their own. This is an incredibly common kind of depression for migraneurs. After all, there is very little skittles and beer about the kind of pain some of us have to deal with all the time. 

2: In a different approach to understanding the co-morbidity, let's look at chemistry. One prevailing theme of research among migraine researchers and treatments is that migraine is caused by a chemical imbalance of certain chemicals in the brain. This causes the brain to misfire, basically, and create the symptoms of pain, even though there is no external stimulation of nerves. So what does this have to do with depression? Depression is caused by a chemical imbalance in the brain. Migraine sufferers are often put on an anti-depressant or other anti-psychotic medicine as a way of controlling the migraine. The fact that our depression that is more situational is also effect positively is just basically a bonus.

So, if you take nothing else away from this, know that the migraine related depression all in our heads... literally. It's the chemicals that are messed up, not our psyches. 

We are not weak.

We are not "sad" and just need to "cheer up".

We are victims of two different diseases:

Depression and Migraine

Venting About Migraines In a Different Way

"How do you vent your frustrations about living with migraine disease in a way that's helpful to your healing, both emotionally and physically?"

I used to not vent about my migraines at all. For some reason, growing up, I decided to held the Spartan ideal of not showing any pian the best. I was so in awe of the story of the Boy and the Fox, of the little sick boy in The 12th Easter Bunny, who nevver cried or complained and thus got a beautiful Easter egg. So I held everything inside. I didn't cry (much), and I just internalized all my pain.

Then I started getting sick...er. Cracks started appearing in my shield, and finally, I had a HUGE meltdown. It was ugly, but I came out a different kind of sufferer.

I'm not saying that i now kvetch about my migraines all the time. If anything, I've started to steer away from the really active migraine and chronic pain communities and BBS's. But this isn't because I'm avoiding the reality of my migraine pain.

Instead, I've accepted it.

I know that that sounds really odd, but it's true. I no longer fight the idea of having a migraine. I haven't "given in". Instead, I accept it as as given, and now work on figuring out how to deal with the fact of pain in my life. There's a huge difference between giving up and acceptance. I didn't understand that before, but now I'm very much aware of it, and try to accept my migraine pain, while not getting overwhelmed with the enormity of it.

I still need to vent on occasion. I'll write rants or raving posts in my personal journal sometimes. I'll cry, a good, cathartic cry until I get the frustration out. Sometimes I'll go put on one of my fedoras, set a timer, and have a pity party for 15 minutes. But as soon as that timer rings, I try my best to accept what is, and move on with my life. There's no point in dwelling on what I can't fix; instead I look for any sliver of a silver lining. But something that I've felt even more effective than my 15 minute pity parties is something so simple, I bet a lot of people don't take it seriously. I write down three numbers and a color. 

I journal at least once a day, and every time, at the end of the journal entry, I have the option of "tag"ging the entry with various tags I've created, such that I can reference back to that subject at a later date. It's quite handy for all sorts of things, but I really like it for my numbers and color. Here's the breakdown:

Number 1: My pain level at the time of posting. X/10 pain scale style. So, for sake of demonstration, I'll say that, based on my level of pain right now, I'd tag this post as a 7/10. 

Number 2: My functionality level. X/5 with: 
               1 = very little pain, which can be felt if looked for
               2 = pain that comes and goes
               3 = the pain is always there
               4 = the pain is bad but basic functions can still be preformed
               5 = incapacitated.
For most of yesterday I was a 5/5, as all I could do was lie on the couch and whimper/sleep because of the pain. However, I'm down to the really good 3/5 that I usually aim for. I haven't been a 2 or lower in... years. 

Number 3: My mood on a X/10 scale, with 10 being basically ecstatic. Right now I'd say I'm either a 6 or 7/10. 

The Color: These colors are based on an interpretation of Somatic Experiencing. 
            Red means that my body is basically shut down, either in relaxation or freeze mode from the over-stimulation from the pain.
           Yellow means that my nervous system is highly activated, either in Fight-of-Flight mode because of the pain levels, or else in happiness, such as laughter, excitement, etc.
          Green comes last. Green is the color that your nervous system needs to be in order to have interpersonal communication/relationships. I personally find it very difficult to stay in Green for any extended length of time,  as the pain of my migraines will poke their head into my mood, and I revert to a less pleasant mind state.
For right now, I think I'm yellow. I'm thinking a lot, analyzing what words I'm going to put down, and generally activated. But that's ok.

Now, I'm sure you're wondering how these three numbers and the color relate to healthy venting about my migraines. The answer is that I'm not venting, I'm stating. I've found that, for me, if I start truly venting without being aware of what I'm doing, I can actually trigger more pain than I had been in, which is kinda counterproductive. 

However, if, every day, I just state a fact about how I'm feeling physically, emotionally, and mentally, it's a way of letting myself say exactly how bad it is without going overboard and getting too depressed about the pain and my limitations. Instead, it's just letting a little steam off, such that the pressure builds much less rapidly.

HuffPost Live Appearance

Sorry for the radio silence. Migraines hath abounded. I'm try to stay on an uptick now, however. I hope that it'll last.

Anyway, I was invited last week to be a part of a discussion on the HuffPost Live on Migraines. Apparently, the person organizing the segment found me through this blog! Wow. I was blow out of the water with pleasure and spent the first half hour after reading the invitation saying, "Wow!".

I was fortunate that I was "healthy" that day, and was able to participate. It was a fun thing in which to be a part.

You can see the recorded session here.

"Live Long and Prosper" - (Day 14)

"May you always have one more spoon for your head."

June Blog Carnival

True Migraine Confessions is up and ready for reading!

"You're Beautiful" - (Day 13)

Dear Gretchen,

I know that this is sometimes difficult to believe, but you're an awesome person. You're a strong person, and deserve recognition for it. Yes, the Migraine makes you physically weak sometimes, but your spirit is strong, and that's what really matters.

You've accomplished so much in your 24 years. You've written My Secret, and taken it from a free form rant to a book that's helping kids who are now in a situation similar to what you were. You've gotten thank you notes, and you know then that you've touched a life for the better. And isn't that what you've wanted to do all your life?

People trust you, both with secrets and for honest opinions. Never lying has its benefits, but you also know when to just stay quiet. You're a very loyal friend, as you know. Once a friend is made, you will go to the mattresses for them, even if it goes against common sentiment.

Migraines have made you a more sympathetic, non-judging person, who has the compassion to go to your limits to help others.

So pat yourself on the back; migraines have made you a better person,

You

"Let's Do The Monster Mash!" - (Day 12)

I've thought long and hard about what movie monster would represent my migraines, and I have a real handicap in that I don't watch a lot of monster movies. Whoops. I did however come up with and answer: the movie Frogs.

In Frogs, it's nature that is the "enemy" of the majority of characters. The innocent are spared, but all those who are guilty of not living well with nature come to a bad end. This is not dissimilar to my own story. It's nature, and my genes, that are acting against me, giving me Migraine. It crept up inconspicuously and then, the status mirgranous suddenly attacked, just like in the final  scene with Jason Crockett. It's just so overwhelming, when something that seems so innocuous, frogs, "headaches", whatever, suddenly rear turn against you.

Even the use of chemicals/pollution is mimicked in my life, as I now get rebound migraines from acetaminophen, aspirin, and ibuprofen because of how often I took them when I was a kid. I made my own fate then, just as Crockett sealed his with the pollution all around. 

I hear the croaks of my migraine frogs at all times, just like in the movie. Still, I hold out hope that I can get off the island.