Western New York Migraine and Headache Disorder Support Group

Got a message from one of my fellow migraine sufferers just now:


Hey there,
I am finally starting the first Western New York Migraine and Headache Disorder Support Group next week.

Here are the details:
Tuesday April 19, 2011 - 7:00 pm
6095 Transit Road East Amherst NY 14051
Plenty of support and parking too


I'd go if I lived anywhere near that part of the country. So if you do live in Western New York, and want a support group, for patients, friends, and/or family, go on over to the site and learn more. 


Quantum in me fuit,


~Gretchen

What does pain feel like?

This is what I'm thinking right now. And I'm thinking hard, because I'm confused as to what pain is right now. See, let me explain why/how I'm confused.

As you might well have read, I've just had all 4 wisdom teeth extracted yesterday. The collective "they" had all told me that this was going to hurt, probably pretty badly for the first 48 hours at least.

Well, yesterday, I was at least partially numb until well after dinner. However, I religiously took my oxycodone every 6 hours (along w/ my antibiotic) so that I would stay ahead of the pain.

Around 11:30, I woke up with some discomfort in my jaws, and so took another oxycodone and some peach frozen yogurt to forestall the pain from setting in, and went back to sleep.

Well, today's day two, and no part of my face is the tingly or complete numb that it was yesterday. I took oxycodone and my antibiotic when I woke up, thinking it would could be the last time that I took the oxycodone, as I really hadn't been feeling much pain, and I don't want to over do the taking of it.

Well, then the morning passed, and I had lunch (peach fro yo blended with strawberry yogurt!) and was talking to Beth, when all of a sudden I realized that my jaws felt uncomfortable. I was also a little more puffy in the cheeks than I had been in the morning when Marcelle had been helping me to remember to change my moist heat packs for the 20min on, 20 min off thing to prevent swelling. So I topped and evaluated what my jaws really felt like in an attempt to decide if I needed to take another oxycodone, as it was getting to be that time again.

I sent out my body scout, and he came back TOTALLY confused. My jaws were in discomfort, yes, but were they in pain? The discomfort that I felt, which my body scout labeled as fiery and stabbing, was not pleasant, no, but it wasn't the kind of pain I'm used to with my migraines. The jaw discomfort would rank, what I would imagine a 1/10 or 2/10 migraine would feel like. (I can only imagine, I have never been below a 6/10 in several years basically in migraine pain.)

However, the fiery stabbing sensation was uncomfortable, or at least not pleasant or neutral, and I was worried that it could trigger a spike 'real'(?) migraine pain. So I took any oxycodone (which has not touched my normal [head]pain levels, btw) to forestall that from happening.

But I'm really, honestly confused right now.

Is my brain so embedded in the status migranous that I don't recognize other intrusions on my head as pain?

Is my pain threshold huge and actually I am feeling a lot of 'pain' in my jaws, and it's just dwarfed by my experiences with migraines?

What does "pain" feel like?


I'm so confused and bemused (and slightly discouraged) by this conundrum.


any insight into 'pain'?




Quantum in me fuit,


~Gretchen

An Anecdotal Reminder About Rebounds

I just wrote this in my journal, and I thought I'd share it with all of your.

I had all 4 wisdom teeth yanked this morning. I had expected full, black out anesthetic, when it turns out I got twilight, which was kinda cool. They kept telling me to breathe...so apparently I wasn't doing too hot a job of that, but other than that it went very...calmly. I didn't feel a thing, and could only feel a bit of pressure, and the sound of the sander.


Then they put me in recovery. And I got drowsier, and drowsier, and drowsier....until I could not keep both eyes open despite my best efforts. They were starting to get concerned, and then, somehow, I'm not sure as I was getting less aware of things, the fact that I usually drink 5 cups of coffee every morning and that I'd been NPO when I came in. I had even joked with the nurses going into the procedure that I wanted my coffee. So, this is awesome, one of the nurses went a brewed a cup of coffee for me. :D I dribbled about half of it down my chin, because I couldn't feel my lips, but within a couple swallows, I started to wake up, and start 'talking', and generally act human. They were kinda amazed, and I wanted to say "I TOLD you so!" but didn't as that would have taken speaking. So I thanked them, and got the heck out of there, as I was now awake.


Then we went across the street to our pharmacy, to get my painkiller and antibiotic scripts filled. They said it would take ~20 minutes, so we went another block to McDonald's and I got a vanilla milkshake and a spoon (no straws allowed) and Mom and I had "lunch". I made a total mess, as I still couldn't feel my lips, but my body liked the milkshake, so Mom just got a stack of napkins and we dealt with it. It wasn't that that bad.


Then we went back to the pharmacy, and I waited in the car while Mom went in to pick up the meds. And I waited, and waited, and waited. Finally, Mom came out and told me that our pharmacist wouldn't even give Mom the prescribed painkiller, because guess what?


IT HAD TYLENOL IN IT!


Fail. That would give me an instant rebound migraine. I love my pharmacist for catching this. I would not have been happy if I had triggered a rebound migraine while trying to treat my jaw pain. So...we came home w/ just the antibiotic and a recommendation for what painkiller to ask for. (I happen to have some of it in my med cabinet for my migraines, so it's not PANIC(!) time, but I only have something like 7 pills left...out of a one time prescription for 10 pills, so Mom just called the oral surgeon and asked for the recommended painkiller that doesn't have Tylenol, aspirin, or ibuprofen mixed into it, as all of those cause rebounds.

Then, having read my journal entry, one of my friends asked me a question in the comments:

"...So if you take any pain killers with tylenol, aspirin, or ibuprofen you get a migraine from the medication? I just want to make sure i have it clear."

This is what I replied with:


"Yeah, ever since 8th grade ('o1) I haven't been able to take Tylenol, aspirin, or ibuprofen without getting horrendous migraine, because I took so much of them in things like Excedrin Migraine, and other OTC painkillers for my increasingly severe migraines. I now get what's called a rebound migraine from any of them, even if I take, say, a Tylenol for a really bad burn I got on my hand from the stove. It's because my brain saw those chemicals, and the migraine pain together so often, that now, whenever it sees the chemical, it assumes that there is migraine pain, and will actually create it if there isn't, just to keep me what it sees as "normal." 

It stinks and is quite painful, so I take Aleve (aka Naproxen) very sparingly, because I don't want to get rebounds from it as well."

--------

I'm going to get on my Soapbox for a moment here, now. I think a lot of people underestimate the potential potency of OTC pain meds, such as the ones that I took. I'm not saying that you should never use OTC painkillers, that's absurd. However, the rule of thumb, so to speak, is that you take no more than the recommended max dose 3 days over the course of a week, unless specified otherwise by a doc or some other medical professional. And then, for only 2 weeks or so. If your pain is so bad that you need the painkillers more than that, you need to contact your doc and get seen.

I didn't know what I was doing with the Excedrin Migraine, until it was too late. So now, I really advocate awareness about responsible use of OTC painkillers, and meds in general. I don't want others to go through what I'm living with.

So be aware, be careful, and please, never take any medication lightly.

Quantum in me fuit,

~Gretchen

Migraines & Frustration

Here is the April blog carnival. I didn't get a chance to submit (hello marathon migraine!) but check out the link, and I'll post what would have been my entry here.



Yeah, they go together, as proved by the above: a marathon migraine spike lost me the opportunity to contribute to the April blog carnival. I got the reminder e-mail, the day before it was due, and I was heading to bed as reclining on the couch was too painful. Not a good time to start writing a coherent blog that I want published. 


In retrospect, maybe I should have gone ahead and slammed something out and emailed it off. However, it probably would have been just a depressed/angry rant on the suckage of migraines. And I don't think that that's really what I should be presenting. 


Instead, I want to talk about how to deal with the frustration that migraines bring. 


Migraines can bring tremendous inspiration for me sometimes, but they can also bring killer writer's block that lasts long after the pain's become reasonable again. Writing this is like pulling teeth right now, because I'm still recovering from the brain block that the over three week long migraine lasted. 


However, instead of getting frustrated and quitting, I'm taking this slowly, and writing one or two sentences, and then pausing to collect my thoughts again. That and I'm going to make this short.


The answer to the frustration is not to fight it. Instead, understand the frustration, and then try and resolve that frustration with diligence and patience.




Quantum in me fuit,

~Gretchen 

I am thankful for...

A ChronicBabe.com  blog carnival has been posted here. I'm only one of a great many giving thanks.

So, be thankful, even in the face of adversity.



Quantum in me fuit,


~Gretchen

Have fun, and support the MRF!

There are still some seats available, so sign up if you can here!

And please spread the word! It's for an excellent cause.

~Gretchen

The Message Has Been Heard

Many years ago, I was told, for what felt like the millionth time, that I couldn’t have had migraines as a very young kid. That I was exaggerating. That I was lying.

I was livid.

I was also on campus, and could only go as far as my mother’s office to get away from the agitator and uncomprehending aggressor. However, I couldn’t get away from their words, or the memories that their words brought to mind. I could remember the pain so clearly. I had taught my body to remember pain by that time. It was out of self defense that I fought nature’s desire to block painful memories. I trained and trained since I was six to remember exactly what the pain felt like. I learned to remember so that I could diagnose myself and know what kind of thing had caused the pain, so I could try and avoid it in the future if possible. I was so good, I could identify 7 or 8 different types of migraines that I was getting, complete with what triggered them, and how best to treat them.

While the knowing how to best treat the migraine was nice, the memories of the migraines definitely fell into the “mixed blessings” category. And that spring afternoon, it was not a good thing. I was wrapped in the memories of my childhood migraines. Of hiding under the stairs at my preschool because the light hurt my eyes. Of going with my mom to her school, because I was in too much pain to go to mine so often that her officemate named his computer “Gretchen” to make me smile.  I remembered that in pre-school and like I would do later that afternoon,  crawl under my mom’s desk and just hide from the world; desperate to get away from the pain in my head.

And somebody had the gall to tell me that it was all a lie.

So I sat down at Mom’s desk, opened a Word document, and began to type, airing my frustration, the pain, and the memories. Fifteen minutes later, I had a367 word stream of consciousness addressed to my fellow child sufferers.

It wasn’t until 2009, when I was talking with one of my cousins, that I even remembered the stream of consciousness, and I sent it to her. My cousin thought that what I had written needed to be shared.

And thus, My Secret was born.

My cousin was my champion. She found me an illustrator to turn my words into something that could be comprehended by my audience.

I finally put My Secret out there for the world in early 2010. Now it’s 2011, maybe 5 or so years since that fateful afternoon, when I sat down in a fit of pique, and I just Googled my name.

I’ll admit it; I let out a very quiet, but very real, “SQUEE!” and my jaw did, indeed, drop. My name was out there, but not just where I had put it. Other people were picking up on My Secret and spreading the word.

I found a site which had an article promoting my book, and the comments made me want to cry. I had reached my audience! There were parents talking about their children, (chronic kids, I call them) and the parents were sharing their experiences. They were talking to their children, with my book or without it, I didn’t care, but they were getting it. Getting the idea that kids can feel pain. My Secret had accomplished what I never dreamed I could do; touch people’s lives.  

I have told them that

It can still be scary when the pain is bad.

I still cry sometimes, …but that’s OK.

I know I’m not alone.

And I’ll tell you a good secret…
Neither are you!

So to my doubter, my agitator, and my aggressor, I thank you. Your doubt in me has given other people hope. And that has made all the difference.

Quantum in me fuit,

~Gretchen

"Life Hacks: Tweaking Work & Life to Deal with Migraines."

I have had writer’s block for well over a month. So I quit writing for a bit, as it was just getting too frustrating trying to force the words out when there weren’t any there. And that’s pretty much what life with migraines is like. It can get really frustrating and self-defeating to fight the pain. It’s so much easier and healthier in the long run, to just put what you’re trying to do to the side for the moment, and come back to it later when the situation is more favorable.

I tried forcing myself forward back in high school; to continue to live the life of an ‘A’ student, and have debilitating migraines. It just didn’t work, and in the end I completely burned out. And I do mean completely burned out. As in I was basically nonfunctional for the next year and a half while my body unloaded all the stress that had built up and buried deep inside my body and mind.

It was, as my Somatic Experiencing therapist explained to me, as if I had been shaking and shaking the coke bottle, without ever giving it time to breathe and release some of the carbonation gradually. Rather, I kept shaking the bottle, in this case, my body and mind, until the bottle exploded from the pressure.

So now I’m learning to listen to my migraines and energy levels. I don’t force my mind to go beyond what is comfortable. That doesn’t mean that I take things easy and never stretch my limits, no. What it means is that I try to slowly stretch my limits, AND THEN STOP, and not insist on going until I run into a brick wall at full speed and then spend weeks recovering.

This is rather like stretching a rubber band out. If you start out gradually, and just gently tug the ends of the rubber band in opposite directions in breaths; stretching and then releasing it a little, and then stretching some more. Stretching a rubber band like this will, if you do it right, gradually let you stretch the rubber band much farther than if you had just pulled with all your strength at the beginning. If you had done that, the rubber band would have just snapped, and slapped your fingers.

So far, I’ve stretched the rubber band of my migraine filled life farther than I had previously even imagined that I could. But it hasn’t all been at once. It’s taken years of dedicated gentleness and consideration of what I could and could not do, versus what I should or should not do. I stretched my limitations where appropriate, such as making myself walk to the mailbox every day, and knowing when to pull back and say “Sorry, no” to walking the grocery store on a bad day.

So even though I had writer’s block at the beginning of writing this entry, I just let it and my mind breathe, and I now have an almost completed entry. I didn’t fight for every word, and I hope that it sounds better than it would have had I completely written it the first time I sat down to write. 

Quantum in me fuit,

~Gretchen

January Blog Carnival

January's Blog Carnival is now up and ready for visitors.

My entry is here as previously posted. However, there are many other entries, each taking the prompt in a different way.

I encourage you to go and read some of the others' work!


Quantum in me fuit,


~Gretchen

"Taking Charge of Our Migraines in 2011"

I'm going to kind of come at this prompt in a different direction than one might expect. I'm not going to go after a cure this year, I'm not going to resolve to lower my pain levels, (although that would be awesome).  I'm going to take charge of my migraines in 2011 by doing two main things:

1. Make new friends and keep up with the ones I have. 

I lost a good friend last year because I didn't stay as active and involved in their life as they needed. Also, people are encouraging me to get out more, when I can, and see people, as it's mentally healthier to see more than just a couple people at the most.

 By making new friends, I'll be given opportunities to help and support, and get support from them. I'll also be able to slowly chisel away at my isolation that the migraines sent me into. By getting out more, I'll be breaking the cycle that the migraines set in place.

2. Promote My Secret, the book that I self published this time last year. 

I need to be getting the book to the people, especially the kids, who need it, and the reassurance I hope that it brings to them. By helping others find a sense of comfort, I gain a sense of comfort, because I know that despite all my limitations, I can make a positive difference. 

Also, as all the proceeds of the sales go to the Migraine Research Foundation, I will, by getting my book out into the market, I'll be bringing money to the Migraine Research Foundation so they can continue with their awesome work studying migraines. I've made headway by getting my offer of donating books to the Migraine Research Foundation accepted; and be mentioned on their For Our Children page. 

Gathering support for My Secret has also been making me new friends, or at least strengthening ties that are already there. Two of my semi-distant cousins have found me through/on Facebook, and have offered their knowledge and help in getting the story illustrated, organized, and printed, and by offering helpful suggestions for how to present My Secret, and myself to the public. In addition, acquaintances are also coming forward to offer what experience and expertise they have.

Both of these latter things are letting me jump-start my first goal, of making friends, and keeping up with old ones. 

So how does this all make me take charge of my migraines in the upcoming year? These two endeavors will put me in the driver's seat of my life, instead of my taking a backseat to the migraines leading me on a path to nowhere. I've tried that in past years, being passive, or beating my head against the brick wall (metaphorically) and it did nothing. So this year I'm going to take some simple steps towards making my life more meaningful.

Quantum in me fuit,

~Gretchen