But believe it or not, there´s a positive side to all this:

I´ve also learnt to appreciate life when I´m not having a headache. When I´m feeling well, I don´t waste my time complaining, arguing, whining about anything. The sky is bluer then. The flowers are more colorful, the world is a beautiful place and I feel like I could fly! I´ve learnt about my strength, that If I can get through a one-week long migraine I can get through mostly anything. I´ve learnt to appreciate the people around me more. After all, putting up with a migraneur is not the easiest task. Those are the ones who really love you and you should be thankful for having them in your life. Also, I´ve been able to help other people with the same problem – either by giving them an encouraging word or sharing with them whatever works for me in matters of relief or prevention.

I know it sounds a little selfish, but when I realize that there are millions of other people out there suffering and battling this cruel condition, I feel a little bit more hopeful simply by not being alone!

And I pray that they be as strong as they can, that they continue trying to find ways to feel better, that they try to get something positive out of this whole thing. I know it´s not an easy task, for I know how debilitating a migraine can be. But remember: you can already consider yourself a hero!”
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I really try to visit this group every day. I have found it to be more of a help than I could ever have imagined. Just to know that there are people going through exactly what I am going through, is such a comfort. I love my friends and family, but they can never know what it’s like to be me. These people do.

A long time ago I used to say I always felt like I was my own hero. Now I don’t feel so out of place for saying that. Turns out I was right.

I’m okay with all of this. I am excited and a little nervous. Big day tomorrow! Possibly even life-changing!

Further Reading:
Botox for Migraines

]]> http://sparkmysynapses.wordpress.com/2011/07/10/botox-this-week/feed/ 2 sparkmysynapses http://sparkmysynapses.wordpress.com/2011/06/29/the-spoon-theory/ http://sparkmysynapses.wordpress.com/2011/06/29/the-spoon-theory/#comments Thu, 30 Jun 2011 00:26:10 +0000 sparkmysynapses http://sparkmysynapses.wordpress.com/?p=308 […]]]> The Spoon Theory

Just ran across this and it’s absolutely perfect. Made me cry because it’s completely what it’s like to live with chronic pain. Every aspect of my life has to be thought out and planned. Nearly down to the minute. What can I eat, where can I go, what kind of people will be there, what’s the environment like, weather, what pills can I take today, how am I even feeling today? And then I have to apply that information to the previous days to see how to proceed, because no day is just on it’s own. If I had any trigger food yesterday then I can’t sleep late today, and especially not if it’s raining. Yes. This is what I have to do every day of my life.

Sometimes I lose control of my spoons. :/

I can remember my top 5 most painful headaches. This is just based on my memory of course, and that fades with time.  These are in chronological order and explained in as much detail as I can provide.

 1. Little Girls and Gasoline Swirls.  I can remember very little from childhood. I get flashes and partial stories. I either remember faces or names, but not both. All of my complete little friends are missing from that time. I do remember my best friend at the time, Melissa. This happened when I was around 7 years old. Melissa and I would run around the town we grew up in, to the river, the water towers, in the woods, pretty much anywhere. It was still (mostly) safe to do that back then.  I remember we were at this creek. It was very secluded and there was a discarded tire in the water. It was a hot summer day. The water had a beautiful rainbow-like shimmer on its surface. The bad part was that the air smelled like gasoline. Melissa had no problem getting closer to the creek to inspect all the potential debris.  I stayed back because I was quickly starting to get sick to my stomach. I soon felt dizzy and began to get a headache. This was the day I would discover one of my headache triggers was indeed noxious smells such as gasoline.  The next parts are blurry but I remember making it to Melissa’s dad’s house just in time to throw up in their bath tub. There was a lot of people in the house and I remember being freaked out about that and just wanting my parents. I have a vague memory of sitting on the floor with something on my head until my mom got there. To this very day whenever I see that shimmery rainbow of pollution on water, I think about that day.

2. The Closet.  I remember a lot about 6th grade. I think it’s because our class was in a trailer and there was a bit of a homey vibe to it. What I hated most about 6th grade was P.E.  (This is actually what I hated most about school, every year of school.) P.E., outside, during summer, for me, is a headache death sentence. I remember one day we were outside in the heat, doing something in the field. I reached my limit on how far I could push myself and I knew any second I was going to throw up and/or pass out. Can’t remember if I went to the nurses office first or if I just went straight back to the trailer. My teacher, Mrs. O., along with sweet air conditioning was in the trailer. She let me lay down in the coat closet, which had a bean bag in it, as this is where we would spend time reading.  She prodded me about my headaches and I revealed a little of myself to her, and then I started to cry. (Crying with the worst headache ever is never a good thing.) I don’t remember the actual conversation, but this teacher left an impression on me. I still remember her face and her full name. She was one of the first teachers I came out of the headache closet to.  

3. Brain Surgery Numero Uno.  In 2000, I had my first brain surgery to drain an arachnoid cyst resting in my cerebellum. To put it bluntly, it felt just like you would think sawing someone’s head open would feel like.  I remember going into the surgery, and being wheeled down a hallway, and then immediately waking up to hot white pain everywhere. Every single movement caused nausea. I vomited repeatedly from the pain, then I vomited from moving, then I vomited from moving from vomiting. I was in the ICU for…hmm, 3 days? Can’t quite remember as I really had no conscious thoughts during that time. (I do remember my brother, sister-in-law, and niece coming in for a visit and my niece giving me a little stuffed kitty.) Recovery from the first brain surgery was something no one could have prepared me for.  The worst pain in my life easily comes from this time.  So basically I don’t recommend getting your head cut open.

4. Wal-Mart Does Stuff to You.  When you work in retail, you have to put up with a certain level of unpleasantness on a daily basis. Wal-Mart is not a happy place to work, but it is a place to work. Having chronic migraine and working at Wal-Mart for 2 years, I gotta say I must enjoy some level of suffering because it took all of my energy to make it out alive.  I had many many terrible headaches while working at Wal-Mart, but the one that stands out in my head (ha), is the one day I needed help and actually asked for it. I usually try to do everything myself. I get home myself, even if I have to wait for the bus for a long time. This day was different. This was the oh my god, I have no thoughts, just one goal – get home.  I was crying at work and my manager made me wait until someone else came in at lunch, even though we had proper staffing without me. This is the only time I have basically shut down at work because of a headache. I stayed in the lab and just stood there crying. I still get mad thinking about a manager keeping an employee there when under that much pain.  Anyway, when I was finally released, I took the long walk of pain back to the break room where I ran into my Ex’s brother, who worked there at the time.  I told him I was waiting for a ride home, and even though he was only on his 15 min break, he offered to drive me home. He most certainly would be late to work but he did it anyway, and I couldn’t talk him out of it.  (This is the sign of a truly good man.)  The ride home was intense for me because I held back throwing up many times.  Every bump in the road was excruciating and the silence felt awkward. I didn’t know if he knew that when it hurts this bad I don’t want to talk . I made it home just in time to throw up in the toilet. I especially remember this experience because I threw up 3 times, and I threw up my medicine. Awesome. You should probably be seeing a common theme appearing throughout these severe headaches, yes?

Side note: Thank you to every single person who has ever given me a ride home because I wasn’t feeling well.

5. Hide Your Weapons.  I now know a perfect combination of events, drugs, and emotions that will produce the perfect headache. I am going to have to make sure this never happens again. When I went to bed this morning at 3:30am after a long stressful cry fest I had a headache. Let’s say pain scale 6. When I woke up 2 hours later, the feeling that bolted through my head immediately after opening my eyes was akin to waking up after brain surgery. Let’s say pain scale 12.  I have no medication to alleviate the pain right now because my neurology office can’t get it together. I went straight for the bottle of Excedrin and took 2, followed by lots and lots of water. I could not lay flat on the bed. The pressure in my head was unimaginable. I was getting scared and I was reaching the ER point. Actually I was reaching the 911 point. The panic that goes through my head at this point produces insane thoughts. Just do anything to make the pain stop. I was so nauseated that I couldn’t keep water down and after 5 minutes of staring at the toilet in horrid anticipation I literally projectile vomited out all the water and pills I had just taken, which promptly scared the cat which was sitting next to me. Feeling an ever so slight decrease in pressure I went for all the headache tricks I could, including HeadOn, Peppermint Oil, and my trusty ice pack.  Somehow I managed to fall asleep, and dread it at the same time, as I had no idea how I would feel when I opened my eyes again. 

Here I am another 3 hours later. I gotta say, I’m a little afraid to do anything. I’m scared to move. To eat. What’s going to make it worse today? I’m tired of these headaches. I’m tired of the pain. Twenty years of this.  I’m tired of having to explain myself. Of having people that I care about not understand. I’m just so tired.

Further Reading: Why Do We Remember Pain?

Further reading: Magnesium & Migraine

I finally got an appointment with a new neurologist. I saw him yesterday morning. He was extremely polite, listened to what I had to say, and explained everything very well. He also looked up things he had questions about instead of just ignoring them (i.e. He took the time to find the scan of my brain to see what the cyst looked liked instead of taking my old neurologists word on what it looked like). He didn’t make me uncomfortable or yell at me, like the old doctor. (Old neuro straight up made me cry in the most unprofessional display of any doctor I have ever seen) So I’m on the right track with this guy.

We decided to get me off the Topamax and as a replacement I will be going on Zonegran. I am reading mixed reviews about this drug, so who knows how it will work for me. My main reason for getting off Topamax (other than the memory loss and trouble recalling words) is that I have been on it for 6 or 7 years and really have no idea if it’s actually effecting my headaches anymore.

Also I will be trying out Botox injections. Thirty-one shots to the head! That doesn’t sound scary at all! I’m totally having someone take pictures and/or video of me while they do it (if they let me).

So two exciting and hopefully helpful things on the way. I’m also attempting to get back on Seasonique, but it’s taking foreeeever.

I am now letting myself fantasize that a combination of these things is what is going to make me somewhat ‘normal.’ 

So until next time…all none of you that read this…

What’s going on currently: Finally a break from the heat! My work stress has partially been decreasing as I have (mostly) been moved to a new position. I am on 2 new medications: Prozac and Co Q-10.
What’s not so good: Ran out of the herbal meds again. I’m just not going to be able to afford them for a while.

The most relevent negative event that happened in August will need it’s own entry, and that is coming sometime soon.

I hate this part.

I came up with something like “I think I need to leave early, I can’t get my migraine under control.” He understood and allowed me to leave earlier, asking if I could tough it out another 30 min, which I did.

I found myself again in the break room since I had 40 min until the bus would pick me up. Sitting there, again, letting the pain just utterly wash over me, I wondered what could possibly be wrong with me. How could I feel like this all the time? Why couldn’t something – anything – be wrong with me?
I am a member of a headache support group, and I remember someone making a posting saying how they wished they had cancer. Because with cancer either you beat it, or you die. I have thought about that so often. People without daily pain will not understand this. There is a NEED for something tangible. Something final. The headaches aren’t going to kill me, just make me wish I were dead.
So I was sitting there and that thought popped into my head. “I wish it were a tumor” I wish it was something that a doctor could point to and say “Ohhh, yes, that is what has been causing you problems all this time! Let’s crack you open one more time!” Or he could look at me with sad doctor face and it would just be Well thanks for playing the game of life, your time is done now! Either way, there is an answer. It would be finished. I was thinking all this, and I started to cry. Then the fact that i’m crying in an empty retail store break room over my imaginary brain tumor just made me cry more.

Time to leave the store.

I started walking towards the bus stop, but since I had so much extra time, I sit down in some shade near some more empty shops in the area. I just wanted some quiet and some relief from the 105 degree heat index. After 5 minutes or so a muffled voice said “Excuse me” to which I looked up and there was a guy with a dolly and boxes trying to get out of the door I was sitting near. I moved. He asked if I was okay and I nodded. Then he asked if I needed to come in (No), if I was waiting for someone (No) and finally if I needed some help (No). It took me a few minutes to realize that maybe he thought I was a homeless person. Sure my hair was messed up, and I know I probably looked a little distraught from the crying and the migraine, and it didn’t really help my case that my giant bag was a little torn and ratty in places.

The story gets kind of normal from here on, but I do wonder what he would have said if I told him I do need help. What kind of desperation must I be facing if I’m fantasizing my alternative as a brain tumor?
I have no special and succinct way to close this.
Today I wanted to give up. I guess I didn’t.