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Saturday, March 17, 2012

Current Symptoms

I'm not doing very well. This is going to be a short update because it gives me a headache if I concentrate. Part of the purpose of this blog is to write down substantial changes in my symptoms for future reference, so here it is.

Thursday night, at a concert, I felt a sizable event inside my head. It's hard to describe, but it was like one of my "brain shocks" from before, but without any pain. Rather, half my head went completely numb, melting away, as if the left side of my brain vanished for a few seconds. My left ear could not hear anything and I felt the left side of my head just melt. It was so unnerving I froze, waiting for it to pass. It went away after ten seconds or so. It wasn't my imagination; my colleague next to me asked if everything was okay (even though I thought I had been disguising any problem.)

Friday (yesterday) started out okay, but by the time the afternoon rolled around my head pounded. The deaf-ear-left-brain-melting sensation occurred at least ten or fifteen more times. I don't know what caused them. I did nothing but rest all afternoon and evening. By the time I went to bed, another old symptom showed up: my scalp turned very sensitive to the touch. It tingled like a box of Pop Rocks sprinkled under the skin. I wanted to touch or scratch the top of my head, but it hurt to do so. It was like touching an open wound. The last time my scalp felt this way was the fall of 2009, right before they discovered my tumor. I'm not trying to sound the alarms here; I'm just trying to write down what I feel right now with as much accuracy as I can.

I fell fast asleep yesterday evening and slept straight through the night, which is uncommon for me. This morning—Saturday—my scalp is again extremely sensitive. I have a wool cap on because my head gets cold, but the occasional scratch of the wool against the crown of my head hurts. When getting Noah's morning pills, I had the worst "brain melt" yet (that's probably the term I will use). I had to steady myself for a few seconds because I thought I was about to pass out. No pain, just ... OhhhhhNooooooooooooooStoppppppPleasssssse ... and then it passed.

No, I am not going to drive a car today.

As I sit here and collect my thoughts, it just feels like a ton of pressure in my head. Too much pressure, and it hurts to stare at this screen anymore. Sorry for the typos or whatever. I'm going to put on an ice pack to see if it helps. I'm seeing my primary care doctor on Monday. My last MRI was six months ago. Peace out, friends and loved ones. I try to put on a good face when I can, but parts of this journey scare me.


  1. Oh Ale...

    I am so sorry. This has been going on for so long and you have been such a trooper. I just want you to know that I am thinking of you and sending love and healing vibes your way. Take good care, my dear friend. I love you.


  2. This just sucks. And I am so sorry. Thank you for being so frank in your posts: I know that you (and MJ) must bear the burden alone, but know that you are not alone as you bear it.

    If there's ever anything you need, please don't hesitate to call me, okay?


  3. Hi Ale,
    Though I've already commented on your fb page, I just wanted to add something. Or rather, ask something. When your brain melts happen, is your vision affected? Or, has your vision changed at all recently - better or worse? To be honest, your description does sound like migraine, or even another manifestation of some sort of seizure (as your brain shocks and auditory auras might be). The fact that they are of short duration, albeit repetitive, makes me think of "misfires" or "storms" of firing neurons. Think electrical storm hits with their accompanying loss of power and surges? I do look forward to hearing what your doctors have to say about this new issue. In the meantime, I'll be scouring the web for any information that may be out there.


  4. No vision changes, and I have since read that is a much more serious symptom to accompany this. The misfiring neurons just makes the most sense to me. The upside is there is no pain involved. It's very unsettling to "lose your head" for a few moments, but I'll take this over the old brain shocks any day. My sensitive scalp is painful, but only if I touch it. This morning (this is now Sunday, a day later) I feel about the same. No "brain melts" yet, but the overall feeling is similar.

  5. I experienced the same symptoms, and the problem was metal toxicity. If you have metal amalgam fillings and grind your teeth, get a mouth guard asap and wear it religiously. (mercury, copper)
    High copper lodes act as a stimulant on the mind = "mental storms". Copper toxicity can be due to a low zinc diet (vegetarian diet, cooking with copper cookware, the residual effect of meds, copper iuds, etc. Correct with zinc supplements (in moderation, and not with calcium, or just plenty of red meat) and lots of vitamin C.....and eat very well.
    Zinc toxicity is another problem that some experience due to Fixodent, high zinc diet, etc.
    Also it is good to eat lots of cilantro (binds to metal) with a kelp pill (iodine - moves metal out of the body) Metal also conflicts with iodine absorbtion = low thyroid levels.

    Just in case this may help......Good luck.

  6. Thank you for the tips. In general, I do eat very well. I don't take the zinc supplements, but I will look into that. Also, I have never tried a kelp pill, but I do eat plenty of cilantro, red meat, etc. Thank you!