Wednesday, April 8, 2009

One Step Forward, Five Steps Back

One Step Forward, Five Steps Back

There seems at times to be a little black cloud that likes to follow me around… I think its time I name him…any suggestions?

Just when you think your headed in the right direction….nope your not.

Oh well, some progress is well…progress…right? Work with me here.

I went to Duke and came home hopeful well that got squashed pretty quickly.

There’s that little black cloud.

I started the Verapamil and to be honest the daily headaches are still around and I have not seen much difference but I still need to give that some time.

I have had the utmost pleasure (insert roll of eyes) to try both rescue medications and I do see a difference in them and prefer one over the other. So that is a good thing.

Now on to the Seroquel. Everything I have read and been told said to watch out!!! Just a little bit of that stuff will knock you out quick!!! Be close to the Bed!!!! Just 25-75 mg of this stuff will send you to lala land!

Well you know me, the ever overachiever…..The high tolerance overachiever at that.

I was prescribed 100mg tablets and told to take 1 and then if that did not work (aka- knock me out), take a 2nd and then if that did not work take a third. Well guess what?

It took two of those bad boys to even touch me…..sigh…and even then it was not a deep sleep that I was hoping for. A sleep that makes you not aware of the feeling that a 400 pound grizzly bear is pouncing on your head. A feeling that your eyes will burst into flames at any second. Oh well, that’s how my past Sunday was spent.

And the Little Black Cloud Continues…..

I had an appointment on Monday with my Neurosurgeon. Just a follow up. Guess What?

My Shunt likes to change its settings all by itself……..Nice
-side note- only a highly powered magnetic should change the setting of the shunt
Here I am the overachiever again….this time with the Shunt….Nice…

I asked the Doctor why the shunt is changing settings and his answer…..He has no idea..

Yep…No idea. So I asked the one question he, I and nobody wants to hear or answer
“Could the valve be faulty/bad?”

Silence in the exam room….I swear you could hear a pen drop.

He said “ We don’t want to talk about that yet, let’s just watch it and see what it does”

Now, I am sure that he does not want to talk about a faulty valve and hell neither do I.

Because…Hello People that would me…Surgery…cutting into my head yet again.

Yep..Hello Little Black Cloud….Please go away

So he reset it and off I went into the world once again…

That’s all that’s going on right? Wrong?

My vision went wacko today….lovely, just lovely…..

My left eye decided to play the game of lets not focus on anything today. I did not think that was a fun game at all. So back to the Neurosurgeon we went to just check and see if the shunt setting had changed. Thank goodness it had not. But the eye thing is a little worrisome. I do have an eye appointment next Friday to have a Full Vision Filed Test. This will check to make sure I do not have any pressure build up in the eyes or Papidillia.

Sigh……..One step forward, Five steps Back and a little black Cloud.

What was life like when my head did not hurt? I don’t remember anymore, I really wish I did.

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