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


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