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.

It hurts so good

ANYONE ELSE HAVE THIS? I have been getting this feeling where I just NEED to have my hair pulled, and hard. (no S&M guys, I promise. lol) The feeling of having my hair pulled all over my head is such a release and almost like having a head massage. Usually I can't have lots of head touching because of my Trigger Point Syndrome along with the ON. But lately I want it the other way around. I was doing it to myself for a while and then I finally asked Scott to do it for me. You should have seen his face when I asked him the first time. lol. But oh man, it feels so good yet is intense. Or as my physical therapist says "It hurts so good".

What did Momma Tomato say to Baby Tomato?

....Ketchup!  

Yeah, I know it is a bad joke.  At least I am keeping a sense of humor, right? lol


I am so, so mad at myself. I forgot to take my morning dose of pills TWO DAYS IN A ROW. Now my face feels like it is on fire, my legs ache like I ran a marathon (and trust me. I don't run.) and I want to gouge my eyes out with a spoon. Now I know I can't do this to myself. My tegertol dose is much too high for me to drop so low so quickly. But it was complete forgetfulness. There was even a point today when I was sitting at my kitchen table and I thought to myself "Amie, I dont think you took your pills today." Now did I get up to check? NOPE. argggggg. So now I suffer. What a dummy.

On another note. I am very proud of myself. At my last blogging event I admitted to everyone that I have a neurological headache disorder and even have a blog for it. There were about 15 people there so it was a big step for me. Telling people that I know in real life about this part of me. I know I shouldn't be so nervous. But I am!  It really is silly, I know.  But I am getting there.  Baby steps.

Yesterday I found out that my dear friend and neighbor has a brain tumor.  It has been the cause of her CDH for the past 10 months.  She finally pushed to get some answers and goodness, answers she got.  She came over this afternoon for some coffee and to fill me in on her condition.  I know a while back I said at one point I wished I had a tumor instead of my ON/TN.  Shame on me.  She is being so brave.  So, So Brave. But I am terribly scared for her.  It is in the frontal part of her brain, the best place to get it if you are going to get a brain tumor.  And it is easily operable and easily removable.  But goodness, it is still brain surgery.  Dear Lord please take after my sweet friend.  This all just hits so close to home.

Another Migraine.

had one of the worst migraines of my life this past Thursday. Oh my goodness it was awful. once it hit full force I couldn't lay down, I couldn't sit, standing made me crazy. I was pacing, laying, siting, repeat for what seemed like hours. Just when i was minutes away from going to the ER my next imetrex kicked in. Luckily I was at my moms to pick up the kids so I was able to stay and sleep while she continues to take care of my children. I slept all day long. The icky thing though is that i haven't felt myself since Thursday. no migraine, that passed thank goodness. But I do feel just icky, tired, and achier then usual. sucks.


July 6th Update- I am feeling better today, but it took me almost a full week. I was so afraid I went back to square one before I went on my new medications in December. Thank goodness it wasn't the case. My body just needed extra healing time I guess.

Physical Therapy, oh how I love you!

So as part of my new treatment my doctor put me on a muscle relaxer 2-3 times a day and Physical Therapy. I went to a new PT building which is actually a new athletic/rehabilitation center for the hospital. I CAN NOT speak more highly of the treatment I have been getting there. 100 times better then what i receiving before in the other location!! They are doing warm-ups, stretches, massage, exercises, and the newest thing, traction. OMG I LOVE traction. Have any of you tried it before? They have done both manual and machine traction and both are amazing. I am seeing huge results. I went from having 100's of those stabbing/electric shock pains throughout my day to about 20-30. Some days only a handful. I don't want it to ever end!!!