Pics of my EEG

I told you was going to post pictures of my Medusa do. So here they are:


I still have no results. I guess no news is good news!

So much to post... So little time!

Well since my last post so much has happened!

On the 6th I was feeling lightheaded before leaving a coworkers office and instead of making a fool out of myself by saying, "Excuse me while I put my head between my legs," I decided I just wanted to go and put my head on my desk. I made it one step out of her office and passed out cold. This wasn't just a your knees go loose and you fall the floor gracefully, this was a your body goes as stiff as a board and you land chin first on a concrete floor covered with industrial carpet passout. Oh the irony of not wanting to cause a scene!

I was taken by Ambulance to the ER where I was x-rayed for broken jaw (none, thank goodness) and CT Scanned for a brain bleed (none again!).

Instead I got a huge bruise and goose egg on my chin
(this picture doesn't even do it justice!) and a blown vein from their first attempt at an IV.

I was released that afternoon and was told by my neurologist that I needed to have an EEG done "because there was no way it was the Chiari that caused me to faint."

Right have you read any of the listservs I am on. Oh well I digress.

So here I am today officially hooked up to 23 wires for the next 48 hours having my brainwaves measured. Oh what fun!! Don't worry I am going to take pictures. Who wouldn't want to document this medusa hairstyle?

So that is what a migraine is...

Friday I had the worst headache, but it was different from all my pressure headahces. It just ached across the top of my forehead. I tried every prescribed medication I had. NOTHING WORKED! Laying down made it worse. I slept terribly Friday night. I literally sat up in bed to sleep. Around 4am I felt so nauseous. I ran to the bathroom and got sick a couple of times and went back to bed. I knew that the sickness was simply from the pain. Fast forward a couple of hours, still feeling sick, still have a headache. Get sick again... and again. Finally I forced myself to eat something so I could try and take some more medicine. I took some Excederin Tension and guess what, it worked! How ironic that I have 3 pain prescriptions and none of them worked but a non-prescription drug worked! And thank goodness it did.

I don't ever want to experience that miserableness again!

Back from the dr.

Today was my 6 week check-up. I now have an even more complicated medication regime. The Nurse Practitioner changed everything up because she said that I shouldn't have to take pain medicine everyday. I am now on my original medicine that I started 6 weeks ago plus she added something called Kappra. It is actually an anti-seizure medicine. There are 2 possible side effects that I could develop. The first is hallucinations. The dr. said that if I wake up in the middle of the night and see a pink dog in the window, not to be alarmed! The second is this medicine can make you mean/mad. GREAT!! Like I am not already mean enough! She said that if at anytime I feel like the side effects are worse than the cure we can change. Mostly she said that the biggest side effect will probably be fatigue. Like I need any help with that!

So that was my visit in a nutshell. She also gave me a new pain med. Hopefully I won't have to take it too often and I go back in 6 weeks...

On a side note Travis and I trying to decide if I should switch insurance. I am in open enrollment for mine but we are moving to a PPO which would be fine you have deductibles and they pay 80/20. Well we are pretty sure I will have surgery within the year and we don't want to have to pay for it. Gotta love insurance!!

This was a BAD weekend.

I got up on Friday and knew that it was going to be a bad day. I made myself take a shower, get dressed and go to work. But by 9 am I had coworkers telling me to go home, I looked that bad! So I went home and laid on the couch for the day. I took every drug I could (prescribed that is) and it still didn't work. I could barely move my head or my eyes. I felt horrible. Closing my eyes didn't help because the muscles in my eyes hurt so bad.

So I muster through it and woke up Saturday still feeling pretty awful. I went through the day trying not to be a party pooper and acting like I felt ok. I didn't. No one can really know the pain. As unless I let it show on my face, they have no idea. Once again maxed out on my medicine. Got up Sunday feeling better but through the middle of Sunday school I had to go take more medicine. Fought my way through church without wincing too much every time we had to stand up, even made it down the aisle for communion. But dinner I was feeling much better.

This morning I woke up headache free! NICE! Yet here is it 8:30 and I have already taken some medicine because I could feel it coming on.

I just don't know how I am supposed to live like this forever. This is literally taking the life right out of me. It is stealing my life!

Saw the neurologist today.

Dr. Herzog is a really nice man! We talked about my headaches and he asked if I have always had headaches and I said I had them occasionally as a child but nothing severe and he kept saying well that is not common. He said children should not have a headache of any kind, severe or not.

This helped him to determine that my headache is probably not all from the Chiari. He has put me on a drug regime, that I am to follow until my next appointment in July.

The medicine is actually to help alleviate tension/pressure headaches, which is what he feels I have that is more prominant than the Chiari and could cause the Chiari to act up.

I will take this medicine every night for week. After a week if I don't see a decrease in headaches I will take 1/2 a pill in the morning and 1 and night for a week. If this doesn't decrease I will take 1/2 a pill in the morning, 1/2 at lunch, and 1 at night until my follow up visit. He also gave me a different muscle relaxer to take with the pain medicine but I can only take 8 total in a week. If that doesn't work I am to use the pain medicine with all that, that I had originally be prescribed by my neurosurgeon! Did you get all that???

He wrote it all down for me. And like my PCP who had the analogy of calling a zebra a horse he also used an analogy of fleas and ticks. The ticks are the underlying (tension) headache and the fleas are the Chiari.

He too thought holding off on the surgery was a great idea and said that in 6 months when I go back to Dr. Michael (neurosurgeon) to have him do another round of MRIs, to check the herniation. He said that if the herniation stayed the same then to continue this plan, but if the herniation changed he would advise surgery.

The reason for this is because the longer we let the herniation become. the more likely it is for other symptoms of Chiari to appear and having the surgery would keep them from occuring.

But like everything there is a risk in the surgery as well. HMMMM.

Feeling not so hot today...

I am feeling like a did a few times before I was diagnosed. I can't describe the feeling but my head feels totally full of water that when I move it sloshes around like a fish bowl. It also just hurts. No particular area just everywhere. Earlier I was in a coworkers office and just the walk back to mine caused my head to hurt so bad, I also couldn't turn to look at someone when they spoke it was like I was pararlyzed. I hadn't felt like that in a long time.

I am feeling better but still feel just weird. I am so ready to see the neuro to find out what we can do!