Wednesday, February 8, 2012

"You have a headache again?"

I can't tell you how often I hear that comment. Ummm, yeah. People just can't get their mind around the fact that I live with head pain 24/7. I think most people think I am exaggerating. It is so frustrating.

Occipital Neuralgia is NOT JUST A HEADACHE! It is a neurological condition that resides in the head. So often I am just so tired of trying to explain my condition due to the blank stares and sad faces people give me when I tell them about my head stuff. So I try to avoid it as much as possible. Put on my happy face and push through it. The only problem is I know my face is a tell-tale book. almost 100% of my pain is behind my eye. When I get the lightening flashes instantly my hand goes up to my eye to press and give some relief. People see my hand pressing into my eye and ask if I am ok. It is a reflex and I would stop it if I could. But instead I have to try and explain. I am so tired of it. I wish I had a better quick answer for them. blah.

The thing is is that I AM a happy person. I love life and love all that God has given me. I feel so very blessed. I am just a happy person living with chronic pain. Often times I feel as though I am living a double life. One side is the Shiny Happy People Holding Hands life. And the other is the pill popping, eye gouging, head grabbing life. Still trying to figure out how to make the two work in harmony together....

Saturday, February 4, 2012


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.

Wednesday, February 1, 2012

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.

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