Maybe not everything.... but helpful

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.

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".

Ha! I couldn't have said it better myself....

{source}

I seriously think I need to get this shirt.  Like now.  My memory loss is worse and worse and I think the most annoying is how I "loose words" mid sentence.  But I guess it is still a better trade off then CDH at a 7+ 24/7, huh?

Last night the strangest thing happened to me.  I got my nightly "come-down" from the day plus I need to take my next pill headache.  But along with it I got this pain that radiated from the very top of my neck that went all the way down to the bottom of my shoulder blades.  I honest-to-goodness felt like someone beat me up there.  I felt sore and bruised, not only on the inside but outside too.  And as stupid as I felt asking him, I had to have my husband look at my back to see if it was actually bruised up, even though I knew it couldn't be.  Also my nerves all over my body were hyper sensitive.  The lightest touch on my face felt like sunburn.  But I also felt it in my arms too.  So, so strange. Very much like trigeminal neuralgia, but not.  I laid down with a heating pad and took an Imetrex, my nightly meds and then some and just crashed out.  But surprisingly by morning I was fine.  What is happening to me?!!

Good news is that I start Physical Therapy on Thursday.  I am going to a new therapy center that is rated super high, everyone raves about it.  I was there for my MRI and was blown away just by walking in the door.  So that's cool.  I love having twice weekly massages.  Hopefully it will help with this neck pain I have been having.  Next up will be another CT of my sinuses.  Dr. D thinks they are beginning to fill up again.  My pain is around my eyes again and across my forehead and cheeks which is where they were really heavy when I had my sinus issues last time.  It was weird but both she and my pharmacist said I look pouffy and had dark blue circles under my eyes, both indicators of sinus trouble. We shall see I guess!

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.

vent.

I have had a rough couple of days. I am beginning to notice my bad days seem to fall on weekends. Maybe because I try and do more since my husband is home from work. We like to do stuff and spend time together as a family. For the most part I am a homebody and me and the kids like to stick to routine. When we veer off routine the kids don't do too well, and it looks like me neither. lol.

But my baby also had tear duct surgery on Thursday, so that was super stressful. Stress is a major trigger for me headache wise. Now he has all sorts of drainage from the surgery causing him to cough and sneeze, his nose is runny so much and I am just stressing as all moms do. This doesn't help my head one bit. And now tonight my oldest son threw up all over his bed. UGHHHHHH.

I have not only been having more head pain in the back of my head, but my eye pain seems to have returned (BOOOOOOOO!!!) plus my cheek bones just ache and burn, and I notice my jaw has been hurting too. Maybe I do have some of that TN like Dr. D said I had. I really didn't think so, but i am noticing more and more facial pain lately.

Probably my most frustrating as of lately, is my recollection has been sooooo bad too. I can't remember ANYTHING anymore. It is so frustrating; I will be in the middle of telling a story and then have to stop mid way because I can't think of the word I was looking for. It is embarrassing and annoying. My husband is so patient, but I am sure it is frustrating for him too. I feel like I am a woman on menopause- only I am only 33. I used to have this strange talent that I could hear a song once or twice and i would know all the lyrics to it. I didn't have to even like the song. i just knew them all. Well tonight at my nieces bday party my brother in law brought out the guitar and everyone was singing along. It was so fun! But could I remember a single song lyric. No. I would remember bits and pieces and then just completely loose the rest. not so helpful or fun at a sing a long.

Tonight my mom was giving my head a rub, trying to help relieve some of my pain. This was always one of my most favorite things in the whole world. My mom is amazing at head scratches and rubs. I used to LOVE when she would play with my hair. I would fall asleep to it all the time. Well tonight she kept hitting trigger points in the top of my head and by my temple. I kept giving her more and more places she couldn't touch. It stunk. I hate that my illness seems to be getting worse instead of better. I used to be so normal.

So not only is my pain back and worse, but I am gaining weight, forgetting my words and can't spell. This sucks.

I always sleep with a fan on. Not for the cool air particularly, although that is nice. But I need the white noise. Wouldn't you know it, my fan broke. And it is the middle of February so who has fans in Ohio in the middle of February? No one. Thank goodness there is an App for that! I have been using my husbands itouch the past few nights and it is a life saver.

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.

Tracking Carbamazepine Side Effects/ Treatment

December 30- I found that in the middle of the night I got this "off" feeling and has a bit of nausea. But probably the most annoying was I had a bit of insomnia! I had the hardest time falling asleep and then staying asleep. OK, I am only on day two, and on a really low dose (I am slowly working my my way up). But I am feeling a bit hopeful. In the spot behind my eye where I have had my most intense, constant pain for the past 5 years I now can best describe it as a "void". I am so used to constant pain, with shooting pain on and off. And since last nights pill I have zero pain or pressure! It is amazing.

I always would tell my husband if I could just take a knife and cut out that one spot I would feel so much better. Well now it is as though exactly that has happened. That is why I used the word "void".

December 31- So as of today: no nausea today and also no insomnia last night. I took my pill 4 hours earlier then the night before in hopes of offsetting the sleep disturbances, and I think it worked. I also feel much more chipper and less frazzled then usual. May have to do with less headache pain or could be the meds- who knows. But so far I am loving this stuff. I want to go hug my doctor. After 5 years of no one knowing what was wrong with me, I was at first very discouraged and afraid with her diagnosis. But as long as I have a med that actually works, I guess it isn't such a scary outcome. Until next Wednesday I am at 100mg a day once a day. After that I jump up to 200mg twice a day so I can only imagine how it will work even better then. At least I would assume so! One thing I have noticed that although I no longer have the pain behind my eye and the back of the head, I am acutely aware of my cheek bones.  I know that sounds weird, but it is a strange feeling.  They don't necessarily hurt, but I do have a constant "sensation" and slight tenderness. Almost like sinus issues. The Trigeminal nerve is located there and this drug is specifically used to treat that one. So so far it is definitely working on the occipital nerve but I think I need to up the dose to notice it working on the trigeminal.

January 1- I get to move up my dosage on Thursday. I've noticed I still have headaches, but in all new places then I ever had before. Its weird. But I hope those settle up some once the stuff is fully in my system and I am on a complete dose. This may be vain, but I must admit I am glad weight gain isn't a side effect for this medication! Honestly I think I would have told her I wanted something else if I was going to gain 30 or 50 pounds....

so far I don't feel trippy at all on this stuff. But I do have lower backache that is uncomfortable and annoying.

later in the night of January 1- Ok, it has been a few hours and now the whole side of my face/head is in serious pain along with my new lower back pain (medication side effect) so I decided to take some pain pills. AHHhhhhhhh. So nice to get some relief finally! I never take narcotics for this stuff, but tonight I just couldn't take it any longer. Glad I finally caved.