Thursday, April 23, 2009

Wasted Away Again In...Oh Wait..Never Mind....

Wasted away again in…oh wait…never mind…

We are supposed to be at a Jimmy Buffet concert tonight.

Singing at the top of our lungs and having a great time….but we are not.

There are several reasons why we are not.

Very good reasons. Reasons that just plain suck.

But it kind of worked out for the best because I would not have been able to enjoy it at all. Let me tell you why.

Lovely Intracranial Hypertension has struck again. The B!@#h!!!!! Ummmm you get the picture.

I started having whooshing in my ears again. It’s a sound in my head of being underwater near a pump. It at times sounds like an AK47 constantly going off. It’s a great indication that my pressure is up.

Also last Thursday I had a full Field Vision test that showed some Edema in my right eye and also some mild vision loss, not good. I am occasionally experiencing visual disturbances which are enough to drive a person insane. My eyes don’t seem to want to focus on anything and my peripheral vision is lost for minutes at the time. These are not good things. These are signs of high pressure, things my shunt should not be allowing to happen.

The results of the above test where sent to my Neurosurgeon and he wanted me to have a Lumbar Puncture done (also known as a Spinal Tap) Oh yes, just great…..sigh…..

So of course he wants the Neurologist to do this. If you all remember I was (key word was, we will get to that later) seeing a new Doctor at Duke. Well to make a long story short, I was not able to get a return call from their office after repeated attempts.

So I did what I swore I would never do…..I called Dr. Idiot…yep….Don’t burn bridges kid’s and I am so glad I did not.

What’s so great is that I called them on Monday, got an appointment for consultation on Tuesday and they were able to schedule the lumbar puncture for first thing Wednesday morning. Whewww…..

Now keep in mind I still have not heard anything back from Duke and I have been calling repeatedly. There is something really wrong about that. He may be a great Doctor, but if you cannot get calls back (not even from a nurse ect..) then as a patient that does not work. Granted it may not be the Doctors fault at all, he may not know. It could be the staff; it could be they are too large. Well, I take that last part back because Dr. Idiots practice has over 20 Neurologist and is huge so that is not a good excuse. Basically, the way Duke handles their patient relations is horrible. It does not work for me.
Well enough about that.

So back to the lovely Lumbar Puncture….

It was not fun. How could it be?

You lie on your side and they numb your back with a shot (that hurts like hell) then they take a hug needle and place it into your spine. The first thing they do is take an opening pressure reading. This is the number I was looking for. Mine was high and it should not be. Then he takes fluid off. This is the part that makes me question my judgment for even waking up that morning. In the process of taking fluid off, he is also lowering my pressure which will hopefully relive some of the awful symptoms I am having. Before he is done, he takes a closing pressure reading.

All done.

Then there is the aftermath.

Lucky for me my previous two LP’s were when I was already in the hospital, I was sedated, on heavy pain medication and could not have told you what day it was.

This time, OMG!!!!!!

The positional headache is a nightmare. I cannot stand or sit up for more than 10 minutes at a time without my back feeling like it will explode into my feat. Upon standing I get what feels like a head rush. Imagine what it feels like when you have eaten ice cream too fast, that’s me right now.

So, I called this morning to the Doctor, (like I was told to do if this happened as I might need a Blood Patch which would rid the symptoms immediatly) only to find out that because I have a shunt I cannot have a Blood Patch.

You have got to be kidding…..sighhh..there is that little black cloud….

So here I sit…I mean lay….because that is all that I can do for now.

I will apparently just have to wait out this positional headache. Unless my Neurosurgeon feels there is something else they can do. But wouldn’t you know he has been in surgery all day so my Neurologist has not been able to talk to him yet!! But that’s okay because these two Doctor’s have been great.
Yes, I just said Dr. Idiot was great. And now he needs a new code name. He was actually friendly. Hmmmm Maybe Doctor Moody or Doctor Surprise would be a better way to refer to him. Whatcha think?

So on I go into another day; head held high and chin up.

Thursday, April 16, 2009

Baby Got What????

Burger King Ad

Click the link below to view:

All I can do is just shake my head in disgust.

Really, come on. Sir Mix A Lot for a Kids Meal Commercial!!!

Give me a break!

Now I am not a helicopter parent by any means nor do I shield my children from the world. Hell, they watch Survivor and have been known to catch a glimpse of Trauma- Life in the E.R.

But there is just something really wrong about this. I am not sure what parts skeeves me out the most. Yes, I just used the word skeeves, I kinda like it, even though it's not a real word.

1. Where he takes a ruler to measure her "square butt"
2. The leveler on the square butts
3. When the "king" says "Booty is just Booty"

Maybe number three has my vote.

To be fair, my nine year old and six year old have seen this commercial numerous time and have not so much as flinched an eye about it. Maybe they have watched MTV and I don't know about it....GASP!!!!! LOL

Or maybe it just says a lot about the world we live in...hmmm that could be it.

But it still skeeves me out to no end.

Saturday, April 11, 2009

Enjoy The Silence

Enjoy The Silence..

I spend a lot of time alone..not by choice, it just unfortunaly works out that way.

Wes works as a commercial pilot and is gone a lot. My two beautiful girls are with their Dad (my first husband) every other weekend. There is a lot of time for silence in my world.

Sometimes the silence can be like thunder. "-- Bob Dylan

Great souls endure in silence.---Fredderick Schiller

Silence…..Have you ever stopped to think about it…stopped to take the time to listen to it…silence

Sometimes silence can bring out the worst in us. It brings out irrational fears of things that go “bump” in the night. When in truth it’s just the water heater turning on.

It brings out the child in us as we hum a silly song to try to make noise reappear, even though we know it will not.

Silence, can make you think….it makes you think a lot.

Of good times, of bad times.

It brings back memories. Some that you wish would just stay away and others that you wish you could hold onto forever.


I sit sometimes and remember when my girls where little and the sound of the pitter patter of their feet running across the floor. I remember the small fits of giggles they would burst into for no reason and smile. I remember hearing Dora the Explorer going full blast on the television.

Silence gives you a lot of time to remember things. Time to reflect.

I sometimes sit and imagine what these two beautiful creatures will become. I imagine their lives and families and children. Silence gives you time to ponder the future.

Silence is a very stoic word when you really think about it.

It is a very lonely word if you want my opinion on the matter.

I sit in silence tonight at the beach with only the sound of the waves and the wind in my ears. I sit here and think about a lot of things. Worry about a lot of things.
In silence sometimes we find more questions… sometimes we will find answers….sometimes we just find that we need to enjoy the silence

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.

Wednesday, April 1, 2009

My Appointment at Duke

My Appointment at Duke

One thing about me, if you already did not know, is that I am an eternal pessimist.
I see the glass half empty, the pack of crackers half gone before you even open them. In fact I have been known to say “Always expect the worst, that way you will never be disappointed just pleasantly surprised”

Now, is that the correct way to see things, probably not, but hey that’s who I am.

Going to the appointment today at Duke I was determined not to have any expectations, especially after the appointment I had at the Cleveland Clinic in Florida.

So let’s regroup real quick ..yes folks this makes the third, yes third Neurologist that I will have seen since the end of January.

The first, lets call him Dr. Idiot….hehehe. He felt that after the diagnosis of Intracranial Hypertension there was nothing more he could do and that migraines were no longer part of the equation. We parted ways with a mutual firing of the sorts.

The second, will call him Dr. Feel Good..yep that sums him up. This was the Doctor at the Cleveland Clinic in Florida. Now don’t get me wrong he was a wonderful Doctor and actually thought that I could still be having some migraine issues. So why Dr. Feel Good? He emphasized a lot about stress and dealing with that. Mind over matter was his idea. He is the one who recommend the Pain Clinic at Duke.

So that brings us to today….yes today. My no expectations day….well maybe just one.

I did tell Mom that if this Doctor even so much as asked “Why are you here” I was going to leave….but first roll my eyes and say “Duh, I’ve had a headache everyday since January 31st of this year…everyday”

No folks, I was not going to do that, I am not that way. But isn’t it fun sometimes to imagine ourselves being that bold.

We had virtually no wait once we arrived. Wow, that’s a good start.

Met with a nurse and she took the usual information. I always like the part when they ask what medicines you are allergic to. LOL, Because for me its not so much that I am allergic to any medicine, it’s that some just don’t sit well with me.

Take for instance Ambien

Now Mom calm down (I know you are reading) I’m not going to share my experience with the evil drug Ambien, not now, not ever…Well maybe one day if I ever have to much to drink and you ask me to tell it. Let’s just say I bet if you Google Ambien stories you will laugh until your sides hurt over the stories people share about this. Trust me.

After the usual nurse Q & A we head back into the room and I just know it will be forever before Dr. C makes his grand appearance. But no, not even five minutes pass and he is in the room…..Impressive.

And he gets right down to business… At first I am a little put off by this, but he is wonderful.

And now here are the highlights:

-The Lumbar Puncture that I had: the levels were high enough that they were almost to the
point of being in danger of vision loss.

-Patients with Intracranial Hypertension can also and most times have issues with
migraines and these need to be treated as two separate issues.

-My MRI and MVR show no signs of anything life threatening.
no further diagnostic testing will be done for now.

-I need to be on a preventative medication (taken everyday)
since I am already taking Topamx he also added Verapamil

- I need to have an abortive medication ( medicine taken at first sign of migraine)
he gave me a sample of two to try Relpax and Maxalt

-I need a rescue medication (medicine taken when the previous does not work, this
medicine is intended to knock you out) He prescribed Seroquel.

Most importantly to me he said that if these don’t work there are other options to try and that we will continue until we find the combination that works.

Whew…what a relief….. A neurologist that understands Intracranial Hypertension, and understands the pain that I am in everyday of my life. A Doctor that is not going to give up on me on the first try.

So why did it take three try’s at a Neurologist to find one that fits for me you ask?

Because Intracranial Hypertension is a rare disorder.
Because not every Doctor is right for every patient.

No, this Doctor did not have a magic answer, shot or medication to get rid of these daily headaches.

Yes, I am happy with today’s appointment and feel like someone is finally listening and understanding what I am going through and wants to help.
I don’t expect to have these headaches gone overnight, but wouldn’t that be nice.

I do have faith and hope that in time life will be back to normal or at least what I call normal.

I will follow up with Dr. C in four weeks and I have my fingers crossed that this combination of medication will provide some relief. But, if not at least this time I know he has more ideas up his sleeve, and I am okay with that.

“The human body experiences a powerful gravitational pull in the direction of hope. That is why the patient’s hopes are the physician’s secret weapon. They are the hidden ingredients in any prescription” Norman Cousins