Thursday, November 20, 2014

Under Pressure

I went to the eye doctor and all I got
was this sort of funny photo of me
looking like I took some shrooms.
Yesterday at the eye doctor, I had the 2nd best visual field test that I've ever had.  Along with checking my vision (still 20/20 - thanks, Lasik!), they do this in order to evaluate how my eyes are doing every time I go in.  My test last month was the best one I've ever had, but many factors can effect it, including whether I'm tired, if my eye gets irritated etc.  In any case, my fields are better than they have ever been.

 I am not having vision problems.  I am not having headaches.  I feel fine.  I haven't been on Diamox since January.  But my neuro-ophthalmologist said last month that he had a "gut feeling" my pressure was still high, and wanted me to get a lumbar puncture to check, because my optic nerves are still slightly swollen.

My last lumbar puncture was in April 2013, when I first got diagnosed with Idiopathic Intracranial Hypertension (IIH).  At that time, my opening pressure was 35.  Normal pressure is around 10-25, with 20-25 being the high range of normal, and something doctors might raise an eyebrow at.  If you get up near 50, that's when you start to have issues like losing consciousness.

Last Thursday, my opening pressure was 36.

Now, I am faced with choices.  I tried not to think about it too much until I went in to my new eye specialist, as my old neuro-ophthalmologist moved back to California.  I didn't get much from the appointment.  As I suspected, since she is a doctor of optometry (O.D.) and not a M.D., I have to be referred to a neurologist.  She gave me a name, and once the referral comes through there will be a 6 week wait for a new patient appointment.

I am frustrated because I feel like no one has answers about this condition, and I hear different things from different doctors.  Last year, I had the n-o telling me that he thought he was going to recommend a shunt.  This year, I have this O.D. telling me that 35 is high but not THAT high and that they'll just monitor me for now, and we have to add another doctor to the mix because she can only treat this condition in conjunction with a neurologist.  More doctors.  More money.  More missed time at work.

I am sad because I thought maybe it was finally time for things to smooth out, to get a little bit easier, for me to live the life I feel like I want and just relax and breathe.  I lay in the hospital bed after the procedure, and I cried.  My life has been improving this year.  Things have stabilized.  I have found myself, and I am finally happy.  The kids and I finally got our own place, and I have a job I love, and the divorce is getting worked out.  I felt like the obstacles were finally being moved out of my way and now I feel like a mountain is being thrown back in front of me.  I'm so fucking tired of climbing mountains.

I am scared because I can't go back on the Diamox.  Last time I was on it, it was awful.  I lost months of my life.  Now, I live alone with my kids.  There is just no way I can function if they put me back on high doses of that medication.  Of course, they told me to lose weight.  Well, that's easier said than done.  I will have to figure something out, but I don't know what.  Additionally, who even knows if losing weight actually helped?  I mean, the lumbar puncture is the only way to measure my pressure, and since I don't have any outward symptoms and my optic nerves are basically the same as they were 11 months ago, how do we know my pressure ever even went down at all?  Maybe it's been the same this whole time.

I am upset.  I want to throw a fit, and cry, and say this is unfair, and I don't want to deal with it.  I can't do that, I know.  But I hate being in limbo.  I spent so many hours in the last five, six, seven years in limbo.  Waiting.  Not knowing.  Feeling unsure.  I HATE this place.  And I'm stuck here.  There is nothing I can do, for at least 6 weeks. 

And I can try to put it out of my mind, but it's hard to do when you know that the choices that are possibly facing you (terrible medication?  shunt surgery?) are really shitty ones.

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