Friday, March 8, 2013

Little Updates

I thought I'd just post a few updates on my brain recovery situation...

Visited the new neurologist on Monday. I actually spent an hour or so on Friday writing an extensive letter explaining my concerns and emailed it to him because I get to those appointments and follow the doctor's lead and then leave feeling that I haven't quite gotten the information I need. So, of course, he didn't have time to read it until I got there, but at least everything was written down. I'll take the same letter to my neurosurgeon appointment next Monday. I would recommend that when you're dealing with brain fog and things that go with that anyway, that any professional visit you make needs to be accompanied by a list of queries, otherwise, you may leave feeling even more fogged up.

What was accomplished, if not perfect by any means, is a plan for long-term health. Determining that yet another anti-seizure medication was making me sick, we scaled back to the Dilantin and the gazillion anti-histamines. The point being to make sure I don't have any seizures. Suggesting that perhaps the fog is coming from side effects of the Dilantin in generic form, we are switching to the more expensive pure pharmaceutical Dilantin. After two days, I already feel less stressed out and so I think this is a good step. However, Dilantin is not a great drug for women in particular. It is messing with my estrogen levels and it is, long-term, a threat to my skeletal structure right down to my teeth. So, it is still an in-between solution for now.

We identified three potential medications that I may switch to in time, as my brain settles down. I can't remember their names at the moment. What I can say is that they're all likely more expensive than Dilantin, and one of them has a tiny research track record so far. I'm okay with taking my time to get to that switch as long as the Dilantin is not making me sick all along the way.

I went for my quarterly MRI yesterday and had a ridiculous panic attack in the pod. I've never had that happen before and it really didn't go full-blown because I refused to let my mind toy with me. I did this by doing some really patient breathing exercises while the "music" of the MRI rattled through me in dissonance. I breathed in four counts, held four counts, breathed out four counts and rested for counts (or finished breathing out), and repeated, imagining that I was drawing a square over and over again. That quieted my brain enough that I came close to falling asleep. It is funny that they bother to put earplugs in, really. I'm nearly deaf now in my left ear, and it is so loud anyway.

Jurica Jelic Microtonal Music Video

I really enjoy this composer's music, and I love this video that, to me, captures the odd rhythms in the passage of trees in a forest to begin with -- like a barcode. It may seem for a moment like it makes no sense, but if I can relax and listen and accept that the rhythm of earth is not necessarily the same, as say ocean waves, but is there nevertheless. If I walk this way and pass the trees in a forest, it is different than if I walk from another direction. And, this is what being in an MRI is like in a lot of ways. If I lay there fighting for a regular beat then I may have a panic attack, but if I can marry my square breathing to the irregularity of sound dissonance then I can be still and enjoy being in a pod or on a walk.

The nearly last thing to mention is that I'm really feeling better without the wheat, and other gluten foods, in my diet. I am aware this is a partial progress, and that as far as my diet goes I have a way to go before I get to the low-glycemic number of perfection. I'd rather take it slowly and be realistic than to do it perfectly for two weeks and then blow it. This take it slowly and make it permanent seems to be a new theme in my life in all directions. Fast solutions don't seem to hit the mark, even if they come close.

Finally, next Monday I'll see the neurosurgeon. This is my last quarterly visit, I believe. After this I may go to see him only  once every six months, and then once yearly. That would be nice. I'll let you know if anything interesting comes up.

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