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.

Still not right.

Such a bummer.  I think I will be changing my meds when I go see Dr. D next week.  My carbamazepine was working really well for quite a while.  And in some ways it still is.  I no longer have my 24/7 headache.  Truly amazing to not live with that anymore! But now my electric shocks are coming to me all day long.  Sometimes they each last a few seconds but more and more often they last me way longer, or are back to back to back.  We went up to the very highest possible dosage at my last appointment, so we are not able to increase it any further.  Something is not quite right with me and this medication and I think we need to look at something else.  We are on the right track, but still not quite all right.

I am nervous.  I know that there are hundreds of meds out there to try, but I am finally used to these side effects.  I know how my body reacts to them and I am dealing with it.  My family is getting used to my forgetful brain and my new occasional stutter.  Now I will have to start all over.  it is a daunting feeling.

The Good, The Bad and The Ugly

The Good
The good news is after being on my upped does of medication (tegretol 400mg 2xs a day) I am thrilled to say I have been 90% pain free or just very, very low pain days for the past 7 days.  It is amazing!!!  I can't even begin to explain what it feels like to wake up in the morning and feel awesome, go all through my day  feeling awesome, and then going to bed feeling just as awesome!  For lack of a better word it is AWESOME.  I forgot how nice this is.  Nice is an understatement.  I feel positive and ready to conquer the world.  I have more skip in my step and feel like I can do so much more in my day.  I am still trying not to over do it because Dr. D said to watch my activity levels on "Good Days".  I have a tendency to over do it and then pay for it with a really, really bad day after, and day after that, and so on.  She said I need to ease into my pain free, low pain days.  So I have.  And I keep waking up feeling great.  Although I keep waiting for the bomb to drop and a major migraine or ON attack to show its ugly face.  But so far I have been in the clear.  Prayers that we finally found the reason for my CDH and I can be good from this point forward!

The Bad
I say 90% because I do occasionally get my ON electric shocks, but they are fewer and farther between. I can't tell you the last time I had to take an advil to dull the pain making it possible to last through my day. It's cool right?!  Well, this past weekend I was super duper busy, my son had a doctor's visit to schedule a surgery on a blocked tear duct on Friday and i accidentally missed my morning dose of meds. Saturday all day I was busy making a picture collage to celebrate my sister's 40th birthday that night, so again I forgot my morning dose.  So unfortunately that night I was all out of wack.  This was the first time I truly felt any real deal side effects.  I had nausea, dizziness, and all over spacey-ness.  It was just plain weird.  I didn't feel myself at all.  It was my sister's 40th birthday party and I was so excited for her and I wanted to be there for her more then anything.  So I pushed through it and had a nice time.  But I really wanted to have a crazy great time!  Truthfully I would have rather been in my bed.  How much does that suck.  So now I know never to do that again.  I will not only be the girl with the morning and night time 7 day pill boxes.  But I will also never go anywhere without a spare dosage incase that ever happens to me again.

The Ugly
Just a few months ago I went on the South Beach Diet to finally drop the rest of my pregnancy weight- probably some of it left over even from my first to be real honest! lol.  I did it and really felt good about myself on the outside again.  No more tummy, my face was thin, it was like the old days and I was sooooooo proud of myself.  17 pounds gone, down 2 pants sizes and almost down one more. Now meet my lovely little Tegretol.  When I started my meds I was thinking "Now I am skinny and pain free!  Rock on!!!"  I am crazy thrilled to be pain free- or at least pretty darn close.  It feels incredible.  BUT (there always has to be a "but" doesn't there...) I am also noticing another side effect.  The worst in my opinion.  The dreaded weight gain.  UGHHHHHH.

I just worked so, super hard to get those 17 pounds off and now I am slowly seeing them creep back on. What good is it to be pain free if I feel like shit on the outside?  I feel fat, self conscience, and just so, so disappointed.  It sucks.  I am definitely bringing this up with Dr. D when I see her in a few weeks.  I have read how some never notice any sort of weight gain while other people gain something like 40 pounds on these kinds of meds.  Of course the only side effect I am noticing is the shittiest one.  So. Not. Fair.  I don't care if I sound vain.  I don't want to take a pill that makes me fat.

Even if it takes my headaches away.

It's like a caffeine buzz, minus the actual caffeine...

You are up super duper late and wake super duper early, or maybe you just drank waaayyy too much coffee in a short amount of time....You know that feeling you get in your head where it is just swooshing around a million miles a minute, you feel like you just need to give it a good shake to settle it down, but of course that does nothing.  You feel like you could talk and talk and talk, about, well nothing really.  But yet, you have so much to say... THAT is how I feel today after my third set of increases on my tegretol (Carbamazepine). I have jumped up from 200 mg twice a day to 400 mg twice a day. I definitely feel that this was a good plan of attack because I could tell the medicine was working, but not yet to it's full potential.  We'll see how this turns out.  I didn't have any weird side effects last time, but this time I definitely feel super speedy. Even as I type this, my fingers are going way faster then i can even think.

Thank goodness for spell check.

Isn't going to the doctor how YOU choose to spend your birthday?

Happy birthday to me! So I got to see my doctor today- isn't that what everyone chooses to do on their birthday- go to their doctor?! lol. It really was a great visit, though. I always leave her office feeling so positive and with so much hope. I ♥ her. Anyways, she is upping my tegretol and decreasing my beta-blockers (which I take as preventatives for my migraines). She thinks I wont need the beta blockers since I am on tegretol. Fingers crossed that I don't get dumb, can't spell and get migraines all at the same time!  

It looks like I am having increasing tension and pain in the muscle in the back of the head, the same one that controls your eyebrows and forehead.  When this muscle is sore and inflamed it is triggering nerve pain in the side and back of the head.  She gave me a 2 week rx for Naprosin to get the inflammation down.  I go back to her in one month for a follow up.

Both of my kids go to a different doctor at the same family practice. The one they usually see has always made me crazy. I always got the feeling that she and I could be friends if I never met her in the office. But as a doctor of my kids I never really liked her. She just kinda rubbed me the wrong way.  I mean, how many doctor's that deal with children don't know how to put a diaper on a kid?!  Or never ask about milestones.  Or really just seem flighty in general.  maybe we wouldn't be friends..... Anyways, I was in the process of looking for a new pediatrician at the same time I was going to start searching for a new GP for myself. Low and behold that is when Dr. D arrived at the office. She not only specializes in women's health, but children as well. If that isn't a sign I don't know what is. I officially moved myself and both of my kids to her today.  *two checks off the BIG list!

Tracking my Carbamazepine increase

January 5- Today I do my big increase of my anti seizure meds. Nervous I am going to turn dumb :/

January 9- Well I have been on my increased meds for 4 full days- today being the fifth, and I feel SO much better. I think my doctor finally found my condition and the right med to treat it. Friday I actually had a PAIN FREE day! I have never had one of those except during the time I was pregnant (I promise I am not preggers...lol) Granite, Saturday I had a pretty good headache most of the day, shooting in and out. But then Sunday's pain was hardly noticeable. So I think my meds are really starting to do their magic. I just need to remain patient and stay positive.

January 12- I have decided to make this blog public.  I need a place to vent, someplace for my family to really understand what I deal with on  daily basis and what my strange diagnosis means, and why I have to see my doctors so much.  Plus now i have a way to track everything more accurately (goodness knows how much I suck at my headache journal....)