Well It has been an interesting several months of trial and error. One of the benefits of our move and of quarantine for me has been to be able to try different treatments while not having to worry as much about traditional things I would need to be doing like shopping, kids sports and school etc. If I try a treatment and it backfires and makes me really sick for a few days it's okay because my husband is home and the kid's don't have a lot of extracurricular activities. This trial and error can lead to consequences though, some of which I may not even realize are happening at the time.
One of the medications that I was prescribed was helping my sodium level and my blood pressure, both of which have been an ongoing issue, but it was a steroid. You may have heard the term " 'roid rage" which indicates that people on steroids can become more emotional and angry. No this didn't happen to me, but what the steroid did is flare up a severe depression that I didn't even recognize at the time. I stopped taking this medication because I gained 17 lb in a matter of a few months which was all water. The fact that it was all water was mainly the issue because when you have that much excess water in your body it can do damage to your organs, so my doctors reduced my dose. It was also tearing up my stomach. I have severe gastritis that I got from taking too much ibuprofen, oops, so the steroid was just tearing up my stomach severely (it is a powerful anti inflammatory, so it has a similar effect as ibuprofen [nsaids] on the digestive system). But the worst and most pervasive side effect I didn't even realize was happening until I came off of the medication. That was severe depression.
Shortly after reducing the dose I realized that a smaller dose did not help my symptoms as much and all the side effects were still present, so I decided to just stop the medication. Once I did this I realized how it was affecting my mental health. I was just sort of wandering through life with an apathy that's hard to even describe. So while physically I felt better and stronger and could maybe do more, emotionally and mentally I was so withdrawn that now I didn't WANT to do anything, which had never been my issue before. Either way the end result was the same, I couldn't participate in life. But at least when it was my physical symptoms keeping me from activities I could still enjoy my kids and my life, just maybe from the comfort of the couch or my bed.
So that's where I have been for the last several months. I have been crawling my way back out of this hole, more slowly than I would like, that the steroids threw me in and finally I'm starting to feel like myself again. I've been outside in the world more. I've been socializing more. I've felt just overall emotionally and mentally stronger.
But now where does that leave me physically? The way that this medication works for my particular neurological disorder is by raising the level of sodium in my bloodstream and increasing blood.pressure. My sodium is chronically low (hyponatremia), which can be very dangerous and which also plays a role in my orthostatic hypotension (blood pressure drops too low when I change positions). So, now that this medication was no longer a viable option I have been working with a nephrologist (kidney doctor), my neurologist and also an endocrinologist. My neurologist is new and younger and coincidentally went to medical school, and used to work with, my nephrologist. That association has actually made my life much easier because they have the ability to speak behind the scenes about treatment plans etc. My nephrologist has been a saving grace in this entire situation. He is very interested in explaining the mechanisms that are responsible for certain symptoms which often leads us to a treatment, sometimes unconventional, to try. We also have discussions about studies and other options for treatment. But most importantly he looks at the big picture and pays attention to balance in my body. So he has been instrumental in figuring out supplements, doses of sodium supplements, hydration levels, and treatments that may be unorthodox but that actually will work. It has been amazing to work with him and has done wonders for my spirit.
So, now through him and my neurologist I am on a different medication that is supposed to stabilize my blood pressure. It's not raising it at all which I find interesting, but it does appear to be stabilizing it so that when I stand up I don't feel like I'm going to pass out or that the room is spinning. I feel stronger and more alert, but not all of the symptoms are gone, and the medication appears to cause sleepiness which is not normally an issue for me. I've been combating the sleepiness by adjusting other supplements as well as when I take the medication and whether or not I take it with food for maximum absorption, etc etc. And that has landed me to where I am now. One of the major things that's been discovered through all of this is my inability to eat enough food to sustain my body and my blood pressure. I'm sure this comes as no surprise to any of you that know me. So, I have been adding protein powder and nutritional supplements to meals, eating bigger meals on a very regular basis, and paying close attention to when I eat and when I take my meds. I still desperately wish they would make a "food pill" to make all of this easier, but until they do, constant management has been necessary and unpleasant. All of these things seem to be helping as I have days where I feel strong and actually good. In general I have very rarely had a day in the past 5 yrs where I can say I feel good. I have days where I feel "fine", I feel "okay", today is a "tolerable day", today is "better than normal", but to actually say I feel good or I feel great is so unbelievably rare that the first time I said it a few weeks ago was very eye-opening for me. I realized that those words are so rare normally for me, but that something about this treatment plan hs been working enough for that to actually happen. And more than once even!
Now, the question and key is consistency. I have days where I can barely get out of bed still; I have days where all I want to do is sleep and some where I do sleep for 18 to 20 hours; then I have days where I feel good or great even and wake up early, function all day like a normal human being, have a good amount of energy and just overall actually feel good. Why the huge change from day to day..... is the million-dollar question. That's where I'm at right now, trying to figure out what is happening and why. So here we go!
