Roller coaster

So I met the neurologist yesterday, and wow do I have things to think about. I’m going to be googling like crazy for a bit.

(As a funny aside, when I was filling out the paperwork, one of the questions was “have you ever seen aliens?”, right in the middle of the regular questions about sleep and moods, etc. To be honest, I found that a bit worrying. I’m especially sensitive to quackery right now. But then I found this article, and I feel much better about him.)

So the upshot of his recommendation is that I can’t be on both a ketogenic diet and the anti-seizure meds that I’m taking, because I’m developing ketoacidosis, probably because I am eating too little. I’m most likely sleeping so much because my liver is stressing trying to accommodate both the diet and the drug.

Then, the next part is that he wants to put me on a diuretic specifically targeting the fluid in my brain. I’m starting to developĀ hydrocephalus, which he could see in the latest MRI. My right eye is starting to bulge out from the pressure. I’ve lost much of my peripheral vision in that eye. On the eye chart, I could read to line 7 on my left, line 3 on my right, and even that was really blurry. (no wonder I have headaches when I read) My entire right side is about 30% less neurologically responsive than the left.

The diuretic is not compatible with being on a ketogenic diet. He thinks that once I titrate up to the effective dose, I should have relief from the headaches and most likely the nausea. I need to be out of ketosis before I start the drug, so a week or so.

Man, I hate change. I was all ‘woe is me, I have to do keto’ and now I’m a bit stompy and whiny about going back. I’ve lost 15 pounds in less than a month! Yeah, I know, not healthily, but still. I’ve enjoyed doing this with Megan, too.

I see my primary care doctor tomorrow, and I want to bounce this off of her, just for another opinion. But my gut feeling is that if there’s a chance this will help with my headaches, I’m all there for it. They are becoming debilitating. My eye starting to bulge out is freaking me out.

Scott found this list of surgeons who perform surgery in this area. There aren’t many, and I’d heard of a couple already, but as soon as I get the MRI report, I’m going to start sending it around to these guys. I have got to get this thing out of my head.

After all of the excitement yesterday (there really wasn’t much, but evidently even long car rides exhaust me), we came home to farm drama removing a wild donkey that we found a home for. I mostly stood around and took photos, but at the end, I dashed about a hundred feet for a group shot as they drove away, (got a great shot!) and a minute later, the world was spinning. Lili and Megan got me into the house where I promptly had a seizure. Damn it.

I woke up with a headache, but felt much better once I was upright, leading me to think that drainage is definitely a factor in these headaches. I often feel better upright than I do lying down, unless I’m asleep. The look on his face when I said I can sleep 14 hours, wake up sleepy, and then take a four hour nap was priceless. “And then when you are awake, you can’t have a piece of fruit or a sandwich? What quality of life is that?”

5 thoughts on “Roller coaster”

  1. ya gotta eat you know… feed the machine? surely there is something you can just shove down. Ever try any of those nutri-shake things?

  2. Yes with diet moderation. Stay away from sugar, but you don’t have to be in ketoacidosis. Also, *please* don’t do anything like gulp potassium again. Taking a lot of potassium at once can cause a heart attack. Hugs.

  3. I saw on Facebook that you had a medical issue but never saw what it was. When I finally saw what it was a bolt kinda shot thru me. I know exactly what you are going thru and I am a couple years ahead of you. I 2013 I was diagnosed with a brain tumor as well. I chose Johns Hopkins in MD as they were number one for brains. I had radiation for seven weeks and it slowed it down but it is still there. I am not a surgery candidate either. I also have a very good friend who is further along then me and she is in chemo and had radiation but they did not work. She also had some cut out as well. The only advice I can give you is live life fully. The side effects will happen and figure out what allows you quality of life in dealing with them.


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