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Sunday, February 5, 2012

Dizzy, Dizzy

Hello, everyone. I wanted to write a quick update about the past few days because I am getting a lot of questions from those who have witnessed me. I don't have the fortitude to write one of my normal entries, so I'll list the facts.

The past three days I have been very dizzy. I feel fine if I am lying down or sitting still, but moving around or tilting side-to-side makes me lose all sense of orientation. I can hear fine, but I know I should get my ears checked for obvious reasons.

A likely culprit (hoping it has nothing to do with the tumor) is my diabetes insipidus. For the past week, I have had both morning concerts and evening rehearsals or concerts. This means I have needed to dovetail my desmopressin nasal spray (that prevents massive fluid loss). So I have missed out on the daily cleansing of "breakthrough urination."

In addition, when I could finally have breakthroughs on Friday and Saturday, I couldn't go. I had the overwhelming urge to urinate but nothing would come out, just a few agonizing drips at a time. I am sure my body's sodium and potassium levels are all mixed up as a result. I am thirsty, but then water repulses me a moment later. Grapefruit juice works best. I go as best as I can, then return to the couch and cover myself with an electric blanket because I am chilled. All day Friday and Saturday I was so tired, sleeping most of the day, resting for the concerts.

The other weird thing is my left leg which aches. Normally I feel my legs buzz when I have reached a full breakthrough (which is the cue to take my nasal spray) but I haven't felt that. There is a shooting pain (mild) that starts inside my left leg and runs up my left side to the middle of my back on my left side. I have tried the stretches, but that whole side of me is throbbing.

Most of all, it is the extreme dizziness. Despite this, though, I have been able to play concerts. (We were in the pit this week for Mozart's Magic Flute, and I suppose I came to work because I had less to worry about regarding appearances. If we were up on the stage I might have called in sick.) After last night's opera, MJ and I came home and, while walking in to see Noah, I thought, "I feel drunk." I had the coordination of a drunk, but with mental focus and alertness. It was so strange. My feet moved like sandbags and I bumped into doorways.

This morning, as I wake up, my ears ring as always, my left side still aches, but my dizziness has subsided a little after a good night's sleep, but it is still there. If I feel worse throughout the day I will call a doctor, and on Monday I will call my endocrinologist to report all this. My eyesight, best as I can tell, is fine.


  1. I wanted to ask you about if you are aware of any alternative treatments for adults with craniopharyngioma. My husband was first diagnosed in June 2011, had 2 transphenoidal surgeries in July and September and has started to experience a recurrence of his tumour in the past month. Surgeon says too early for more surgery; we are meeting with a radiologist soon to discuss that option. Very disheartening. Would appreciate comments. Unable to find any support groups for this particular type of tumour. Inspired by your blog.

  2. Hello - to insure your privacy, please send me your email address. Mine is:

    I have a number of places I can direct you, but I am not a doctor. I am just a patient like your husband, also looking for answers. My prayers are with you, and I am glad my blog can be of some inspiration to you. PLEASE DO get in contact with me privately (as have many others) and I can be of further assistance.