Friday, January 13, 2012

It is not just a headache.

Yesterday I had one of my bad Chiari days. I woke up with this pressure pain all over my head. It felt like someone was blowing up a balloon inside my head. The balloon was continually being blown up with nowhere to go and not popping. (Really hard to explain the pain.)
It felt like my blood vessels were going to explode. It was a throbbing pressure that went from the back of my head/neck all the way up through to my eyes. As if someone was taking an icepick to my skull.
I don't get these often anymore. (Thank God!) It lasted all day. A few ice packs and aspirin later...pain level lowered. So I didn't call off work; I knew it was a slow day. I got off work and the pain level went right back up. It was a miserable trying to fall asleep. More aspirin and ice packs. Finally fell asleep. Woke up at 4 AM and it was finally gone (as good as gone anyways).

This came out of nowhere. If only there was a way to predict when these days were going to come up...I'd be able to prepare myself. (Not that it would necessarily help)
I hate that when you say headache it comes with the assumption that it can all be taken care of with some tylenol. A headache? Oh ok that's nothing. It's not just a headache. I want to punch the person who gives me that reply. You don't understand what I'm feeling. You do not understand my pain. You do not take the time to listen to me tell you. Why do you ask me how I am in the first place if you really don't want to know the answer? Frustration.
Anyways...I have always had a hard time describing my head pain. Its a weird pain. What do you do when you are explaining it to someone else?
All chiarians out there... I'd like you to post here with your description of your worst Chiari "Headache"
Don't hold back on your description. What does it feel like when you are having a bad Chiari day?

Oh and Happy Friday the 13th!
In honor of Friday 13th ScaresThatCare is having their $5.00 Donation Day. Click their name to help out sick kids and a chance to win some cool prizes! Learn More Here

My sisters blog on Photography & Modeling :Model Eliza Jayne


  1. I have had that headache today!! Nothing I take will get rid of it!! Mine is this weird pressure around the base of my neck that hurts so bad my neck muscles tense up. I used to take Excedrin but they have recalled it so now I just take Advil but that doesn't cut it!

  2. @Adrianne - I hear you. Medicine does not always work. It hardly ever works. An ice pack helps me the most as it at least helps numb/freeze the pain.

    @Dixie - *hugs*

  3. i constantly explain to people about what it feels like to have one of "those" headaches and i ALWAYS use the blowing up of the balloon nice (in a bad way) to connect with someone who literally and physically feels my sucks! just went through my 2nd surgery for a ripped durapatch...this one is SO much worse than the first....i am still on painkillers almost a month out....i just hope it gets better and each day gets a bit brighter...good luck to you my friend...

  4. My pain feels like my head is just way to heavy for my neck and hard to hold up my head. The starts at the base of my head and feels like pins and needles traveling up the back of my head to the top. my eyes start to hurt and bright light hurts to look at. my head is pounding and the pressure is just to much and nothing helps all I want to do is sleep but even sleep doesn't help because of the pressure. When it gets this bad I start to lose feeling in the left side of my cheek and lips and hard to get any words out at all. It is so hard for anyone who doesn't know the pain and trying to explain it is so hard.

  5. I agree with everyone! I have always described my bad headache days like I need a turkey popper in my head...Its terrible..Hate knowing we are all suffering, but nice to know we're not alone. <3 I am scheduled to have the decompression surgery soon. Just working out the specifics. Its extremely scary...

  6. Today is very painful for me I am having another chiari head feels like explosions in your head like your eyes are going to fall out and lasts sometimes 30 hours or more.

  7. I like the balloon analogy. For me, its the worst when I get a head cold or if I have been doing a lot of manual lifting or bending over, or a combination of the two. I know Chiarians should limit this type of activity.

    At the peak of the pain, usually right after a coughing fit, the pain will be so intense that my eyes want to roll back in my head and it almost knocks the wind right out of me, like a punch to the solar plexus.

    I describe it as the worst brain freeze you have ever had, but on steroids. Its like awakening the Kraaken in the abyss that is your brain.

  8. My worst Chiari headache pain is like a helmet that's too tight and you can't get it off. Rocks all around my head. And literally no medicine works and no doctors have helped