Do not give up hope!!! There is always a different medication you might try that might make all the difference, and the documented evidence is that most people who are in treatment for this condition do improve over time, though it often does take some exhausting trial and error to find a treatment path that works. None of this is your fault, though the difficulties of finding a positive outcome will make you feel like a failure in the meantime. You are not!! Your poor brain just can’t tell you what it needs, so you and your neurologists have to kind of cast about in the dark for the right solution. Actually it is more systematic than that—have you seen Dr. Hain’s flow chart?—but it does feel like pin-the-tail-on-the-donkey sometimes. I realized that my treatment path had actually followed a rather typical and systematic path though it felt completely chaotic and random as it was happening.
You probably feel like you are spending so much time doubting yourself and wondering what you should do—though that’s really your neurologist’s job—and in the meantime life is just passing you by. It is so frustrating and I understand the anguish and sadness of this, so many of us do. This is not something you’ll want to hear, but you are very early in your experience of this horrible condition, and it is often a long haul. In my view you’re right to change your expectations for a while. Can you go on disability at your job? I know it’s not feasible in every situation, but if you can tell yourself that letting your brain heal is your job right now, maybe that can help reframe your expectations of your days. If you can find a med that brings you a level of symptom control so that your brain is not being constantly ramped up and overstimulated, it’ll give it a better baseline to heal. When you’re so symptomatic every day, it’s sort of like a wound that can never heal.
Reconstructing your identity is another task. I had to reframe things so that I was a person who was healing, that was my job. Lots of resting and allowing my brain to chill and not be overstimulated or upset. My couch and I are good friends. But it’s not what I had to think about all day long. I could still be a good partner in some ways, a good listener for the few good friends who stuck around and had no expectations of me, and a good sister and daughter. I could still read (to an extent) and educate myself even if I couldn’t participate in public life much. And I could find a few things each day I really enjoyed and not feel guilty about them, because that was how I was constructing meaning in my life. That was how it had to be, for a looong time, and in many ways still is. It was a big shift but it was fine. Initially it was not what I wanted, and I spent a lot of time crying and saying “I just want what I had” but I don’t do that any more for some reason. The psychology of this is difficult for numerous societal reasons, largely the invisibility and devaluation of people with chronic illness or any kind of disability, but it’s totally possible to live a happy and fulfilled life even if you’re not being supposedly productive.
Going on way too long here but—it may take time, much more than you want, but control of your symptoms is totally possible. It may take medications that sound daunting, but—that’s what they are there for. I was intimidated about the idea of taking topiramate for some time until I realized—I am not getting adequate symptom control on my current medication regimen, don’t I want a better quality of life? Of course I do! That is why I am seeking treatment. And—time is also a factor. I have been on the same medication regimen for about 18 months and have noticed a marked improvement in about the last three or four months, so, again, it’s a long haul.
If I can find some of the words that Erik wrote to me when I first arrived on this site with my “My life is over” message I will pass them on, because they gave me so much comfort and direction. Please know there are many here who have felt similarly to where you are now, and, importantly, have come out of that hopeless place, not necessarily back to where they were before onset, but to a much, much better, more hopeful and happier state. xo L.