KAPLOW!

This cartoon is pretty gross.  But then again, what about migraines is pleasant- NOTHING!  And how many times have I said during a migraine I feel like my head will explode? Every. Single. Time.  I completely relate.

Maybe not everything.... but helpful

Am I the only one I know....

Oh how I can relate to this song "Migraine" by Twenty One Pilots. Not my type of music AT ALL, but the message and lyrics are right on.  In the midst of a migraine I have never ever felt more alone. I try to pray when I am in the middle of such pain, but I can't keep any sensical running thought in my head except "I think I am going to die. I think my brain is going to explode in my skull. Or maybe my Skull will explode because my brain is swelling larger then my skull can hold." I have these thoughts every single time. Now I just try and remember to at least add God to my sentences. "God please don't make my head explode. God I think I am going to die. God, please don't make my brain explode inside my skull." Rational thought is almost impossible in the middle of a migraine. This is the best I can do.

You don't really want to know, do you?!

Eye pain a lot today and yesterday.  What did I tell you- I say I am feeling OK and I start to slide back down hill.  It blows.  I guess it was the calm before the storm.  Bummer.  Funny picture though!  Makes me smile every time I see it because it is so, so, so true!!  Anyone else relate?

Almost OK.

Things have been good.  Really good actually.  I almost am afraid to put the words to paper, in that saying it aloud will jinx me and I will get walloped hard and awful.  But I've been feeling pretty OK for a while now.  My ON has really, really calmed down, to the point that I hardly even notice the shocks and ice pick stabs anymore.  I know I am still getting them, but they have been numbed down so much more considering how I was just even a few months ago.  On one hand- It. Is. Amazing. I finally am getting the relief I have needed for so long.  But on the other hand I almost feel like I can't get myself too excited, go out and do too much or almost walk on eggshells in fear of triggering an attack.  And now that I have been feeling pretty good on a day to day basis when I do get a headache, it knocks me out cold.  I have a harder time pushing through the pain and putting on that happy face like I was so good at before.   When I get a "headache"  I get

a HEADACHE.  

I have been noticing that my TN has been the thing that I have feeling more and more lately, which is new for me. I always had symptoms, but nothing too debilitating. Nothing like those people you see on youtube have. But for the past month I have been affected in my jaw big time. I actually dropped my fork when I took a bite because the pain was so intense. This was no toothache.  Every chew sent electric shocks through my mouth, jaw, and ear.  Over and over and over.  It got to the point where I was afraid to eat.  And then it was gone.  G-o-n-e.  And then the "sunburn" feeling came back across my cheeks each time I would use my blush brush.  I don't even have a tan, let alone a sunburn.  But the lightest touch of my soft blush brush would make me jump and twinge like I had beet red cheeks from sitting in the sun too long.  I also got that crazy electric shock in my tongue like I told you about a while back.  It came back just this week; again in the middle of the night.  But it isn't every time.  Not enough for me to feel like I can even really complain when i look at my quality of life one year ago.  I am doing so much better over all.  It just makes me a little scared when new symptoms pop up.

I saw Dr. D last week for my 6 week follow up (we were able to push my 4 week ones to 6 weeks, so I must be improving somewhat).  It went well.  We are keeping me with the dosages of all my current meds (carbamazepine 1200mg, Celexa 20mg, cyclobenzaprine 5mg 3x a day and my birth control of course).  I did ask her to change my abortive because Imitrex just hasn't been working for me like it should.  I asked her about Maxalt since I got a sample from her and it worked in 15 minutes(!).  She said she loved the stuff and wrote me a script.  Got a call from the pharmacy after I dropped it off telling me that for 30 pills it would cost me $200.89!!!  Ok, so there is no way we can afford that.  I asked how much 5 pills would be hoping it would get me al least through the next few months or at least until I saw her next and jest 5 costs me $39!.  Absolutely ridiculous.  A 100% not fair.  I need to call Dr. D back and see what she thinks would work well instead.

So yes, in one way I am doing better, and other ways not so much.  My biggest complaint these days- I'm tired. I am just so freaking tired of taking pills 3 times a day. I wish I could flush them all down the toilet. (I won't because I'm not stupid.) But being chronically ill just freaking sucks.

Chocolate and Vicodin

*source*

Last night was so amazing. I got the book "Chocolate and Vicodin: My quest for relief from the headache that wouldn't go away" by Jennette Fulda out from the library. I started it last night and after just reading the first chapter I truly felt like I wrote it. It was literary deja vu if you will! lol. I stayed up wayyyyy too late reading because I just couldn't put it down- I am already 105 pages in! Please go get this book. It is like reading your own life, which makes it erie in a way. But reassuring as well.

I think I am going to go out and buy this book for my parents and my sister. It is a great way for them to see that it isn't just me. (I don't think they fully understand the extent of what I am going through). As a matter of fact I want everyone to read it. It makes me want to open up myself and actually share my blog with my friends and family. I don't know what it is that changed me considering I talk to my wonderful support club friends about this life of ours every day. But this book hit me on a very deep level.  I guess her openness with the world about her debilitating, invisible, chronic illness just inspires me so much.  She is so brave.  I want to be that brave.  I can't stop thinking about this book. I feel as though she must be my long lost twin sister who shared my story since I didn't have the guts. weird I know. but true.

Every bit of this book felt like it was my story, beginning to end.  Like it was ripped out of the pages of my diary, only Jennette is much funnier ;)  I wish I could go out and meet her in real life, to have such a parallel life with another individual that I have never met before- crazy.

bye bye anxiety

Isn't that the truth!

I have had so much anxiety, it has been eating me up alive.  I am naturally a homebody, but this was getting ridiculous.  If I had more then one thing on my plate I would freak out.  I seriously had no idea how on earth i was going to get it done along with taking care of the house and the children.  When the kids would misbehave it was like it was the end of the world.  I just couldn't keep things in perspective.  I know it is a combination of the side effects of my new medications and just the plain old stress of my ON and TN.  But no matter how much i tried to keep it all together, I couldn't.

I finally brought it up to my Dr. after having a major melt down to Scott about it all and she put me on an anti-anxiety drug called Celexa.  I have been on it since the middle of June and can I just tell you this- I feel like a NEW WOMAN!  I don't feel spacey or strange.  I don't feel emotionless or any of those feelings I was afraid I would feel being on an anti-anxiety pill.  I actually don't feel like I am on anything at all as a matter of fact.  I just feel like AMIE is back.  I don't get stressed out anymore.  I rarely get so overwhelmed with the kids that i need to yell.  I just feel so much happier and at ease.  Thank you again Dr. D!  Hopefully i won't need to be on it forever, but at least right now while I am coming to terms with my conditions, this is a good place to be.