I thought I would add more details from my re-evaulation appointment yesterday.
The basic gist, is some things look good, some old weaknesses have reappeared, and a new weakness has shown up.
So, what looks good?
Well, my ability to look back and forth along a horizontal line held steady. I was able to follow pursuits and saccades decently.
Some old weaknesses showed up, such as my left eye trying to take a nose dive every time I look down. And my inability to dump my velocity storage. Your velocity storage contains info how fast and what direction your moving, so if it’s not dumping out the info consistently, then you can still feel like you’re turning when you’re not. Also, my right cerebellum has become dominant, pushing my eyes to the right and then they snap back to the left, creating a nystagmus, I believe.
And a new weaknesses that I don’t remember dealing with include- my left eye aiming higher than my right eye for some of the tests.
Since Dr Z wasn’t there yesterday, I’m waiting until Friday to get assigned new exercises.
The good news is that the feeling of my head being pulled backwards (a MdDS symptom) has stayed in the background. I think this is partly due to the help I’m receiving from SOT.
So this is what it’s like to be in the trenches of healing. It’s hard. And like life, it has it’s progress and setbacks. I’ve been in a season of progress, but last week I had a setback.
As I got into the car after picking up a few things at our local fruit stand, I started to get into the suburban but my timing, balance and and projected angle was all off and I completely smashed the top of my head against the car door frame. I was perfectly positioned under it as I hopped onto my seat and WHAM I hit it. And ouch, it hurt. My first instinct (often my first instinct when something goes wrong these days) was to cry. But I wanted to make it home first. My second instinct is to then curl up in a ball and isolate myself from everyone. Which I did, Somewhat. But life got in the way this weekend (a wedding!) so it wasn’t all bad.
But thankfully because of the wedding and the two hour drive to and from, I had scheduled a functional neurology appointment this Monday instead of my usual Thursday. And Thank God I did. This way, I was able to get in fairly quickly and after a brief interview where I complained of dizziness, light/sound sensitivity, fatigue, etc, Dr Eric decided to run a reval to figure out what was going on. The results weren’t terrible, but did show some new weaknesses and a return of an old weakness. Hopefully later this week after he has a chance to consult with Dr Z, I’ll get some more specific exercises so I can get back on track with progress.
Yesterday I had my fourth sacro-occipital therapy session.
This week she was able to open my cranium and did some serious rubbing, pulling and pushing on my face and skull.
I think I’m noticing a difference. After the third visit I noticed it was easier to stand up straighter. And my neck seems to float over the rest of my spine more naturally.
I have found it helpful to do SOT one day and then do functional neurology the next, as SOT seems to slightly mess with my MdDS. The night after my third session I had a little bit of MdDS when turning to quickly in bed. But now that I had my third and fourth sessions this week, and had my functional neurology visit for the week, I think I’m reading quicker!
After that scare, I became much more motivated to keep track of my salt while eating. And I slowly developed an intuition as to how much salt I could eat. Although, it did seem like randomly at some point during a month time frame I wouldn’t guess right and I would end up with another episode, although much less severe.
I had one incident in May where I drank some dessert wine (maybe 1/4 cup – I’m not a huge wine person) on an empty stomach and ended up with a small hangover. Although dessert wine does not have salt, it does have lots of sugar and alcohol, both of which encourage water retention. Because I didn’t eat/drink these regularly I never found it important to regulate, but I imagine it would be if you did consume them often.
Although the second time I had an episode, it was scary, as I thought it would be a direct repeat of my previous attack, I never had one as bad as the first one. It eventually became routine enough that it wasn’t scary. At some point, I would start to notice my ear filling up in the evening. I would then make a point of drinking lots of water. If my ear got to a certain fullness, it would be impossible for me to be comfortable laying down and I would head down to the couch to watch tv until I passed out from fatigue. I could usually find a position among the couch cushions at some weird angle where I wouldn’t feel dizzy, so obviously that was helpful.
After being on the diuretic for awhile, I slowly eased into being able to eat 1200 to 1500 mg of salt (sodium technically) a day. Which was hard. And frustrating. I cut out 99% of processed goods and got really good at estimating salt content. I used myfitnesspal a lot at first to help me keep track. I would look for an item similar to what I was eating and then enter in the quantity of that item that matched with the amount of salt I was eating. I didn’t bother entering in food that I was eating that didn’t have salt, so it wasn’t an accurate food log, but it did help me to keep track of salt. Plus I liked the summary option that would allow me to see how much sodium I had eaten at the end of the day.
I could usually tell within an hour or two after a meal if I had eaten to much salt as my ear would start to pop incessantly and the pressure would increase. If I had too much salt, then the worst would happen. I would basically end up with what I eventually termed a “salt hangover”.
The first time it happened, I had been watching my salt for a month or two, and I had Korean food. And I wasn’t really paying attention. That evening/night I definitely felt off, and really thirsty. I didn’t sleep well and could tell my ear was filling up. I made it to church and was dizzy enough at the of the service that dad drove me home. At home I napped and tried to do yoga, meanwhile I could feel doom approaching. I kept drinking water, but I was slowly getting more and more nauseated and dizzy. I didn’t really know what was happening, but at some point I took my diuretic and when that didn’t seem to be helping I took it again (maybe 4 hours later). I drank and drank. And felt more and more nauseous. It was the worst feeling in the world. Knowing that drinking fluid was the only thing that could help, yet being nauseated at the same time. At one point, I thought I was going to start throwing up and black out and that’s when Mom gave me a valuable anti-nausea pill. It took the edge off the nausea so that I could start breathing better and it helped me able to drink more. I wish I had a picture, but at one point I was lying on my bed with a water bottle and two 1.5liter pitchers filled with water so that I could refill from my bed and not have to get up. I spent most of the night drinking and dozing in a dizzy stupor. I only slept a couple of hours (I think) and by the next day I was still dizzy and feeling like I had had a really bad case of the flu. I made several trips to the functional neurologist and it took me all week to fully recover from my carelessness!