Where we last left off I had just come home with a renewed sense of hope after attending treatment at Mount Sinai Hospital in New York City. I had made improvements, but what really excited me was the idea that remission was within reach. If I could just avoid my triggers for a few weeks, maybe a couple of months, I would be in remission. After I posted my experiences at Mount Sinai, I got lots of messages from other people who had attended and went into remission soon after. A common thread in almost all the messages was that it took about 2 months. For most people, the motion sensations gradually reduced until one day, things just seemed normal.
I’m a total type-A perfectionist, so I went to work readying myself to create what I hoped would be “ideal” healing conditions. I was armed with face-wrapping orange glasses and new baseball caps to shield me from the bright lights and screens that always seemed to trigger my symptoms. I was ready to use all the relaxation techniques I had practiced to keep my heart rate down. If anyone was going to reach remission, it was me! I was going to try to do everything I could to make it happen.
The days the followed were a lot more difficult than I had anticipated. The weather was terrible. Lights looked like they were flickering to me, even wearing all my gear. I didn’t feel confident in my new hat and glasses look, but I was too scared of a reversion to take them off or switch back to my pink migraine glasses. My days were long, busy, and stressful. I would forget to use relaxation techniques. Most days I was too exhausted to scrounge up the motivation to go to yoga class or walk in the icy weather. I was bone tired all the time and needed more sleep than usual. After a day at work I needed sensory deprivation, even watching TV seemed overwhelming.
Although my rocking/bobbing/swaying felt significantly lighter and easier to deal with after treatment, this invisible progress was very hard to explain. It felt like most people expected me to come back from treatment back to normal, and I wasn’t. I was happy with my progress, but I had to explain that wasn’t “cured.” It was hard seeing people’s disappointment, even though I wasn’t necessarily disappointed about it myself. Seeing the reactions of others made it harder to appreciate how far I had come. It was a frequent reminder of how far I had left to go.
After about 3 weeks of orange glasses, hats, and my best efforts at trigger avoidance and relaxation, I was becoming pretty miserable. Although I was maintaining my progress, I felt like a failure, unable to “stay relaxed” while coping with things that were chronically stressful and a few particularly stressful surprises. I usually deal with stress best by getting out and having fun with loved ones, but in my quest for full “trigger avoidance,” I was opting out of fun things. Staying home reading when I really wanted to be out doing things was compounding my sadness. Trying to control my symptoms was making me miserable, especially when life kept throwing curveballs my way.
On Pins and Needles
You know that feeling you get after your foot falls asleep? It feels like tiny pins and needles moving quickly inside your skin. I started to get that feeling between my right eye and right temple, about 3 weeks after returning from NYC. It was mildly annoying. One night, the pins and needles moved to the left side of my face, then to my left arm, then my left leg. The tingling was constant. I tried to keep calm. I told myself it was probably just some weird MdDS symptom I hadn’t had yet. I had a MRI scheduled for the next morning (to rule out any structural causes of my continuing migraines and MdDS symptoms), so I tried to stay calm and told myself that answers were coming.
I took Lorazepam for the MRI, but it didn’t help. I was in the machine while the numbness moved around the same spots. Later that night, the pins and needles spread to my whole body. One minute my tongue would be numb, then my throat, then both my feet, then my cheeks, and so on. It would move around to different spots or multiple spots at once, but it was constantly there. Sometimes it felt more like a tingling, sometimes a burning, and sometimes a numbness. I would repeatedly check in the mirror to make sure my face was still moving symmetrically. I looked at my hands to make sure they weren’t turning blue. The feeling was coursing all around my body, all day long while I was rocking like a boat. It was overwhelming – complete sensory overload. I wanted to get out of my body.
I cycled through negative and scary questions on a loop: Am I dying? How am I going to live like this? What is happening to my body? Do I have MS? I’m already miserable on a boat, how am I supposed to push through this, too? It was hard to concentrate on anything. I was scared. I knew if there was something major wrong with me that it would show up in the MRI, but I was afraid to get more bad news. I worried that even if the MRI was normal, this numbness would be another life-altering sensory issue that doctors couldn’t help me with. Nothing the doctors suggested or that I tried worked to stop the sensation.
The full body pins and needles lasted for 3 more days without a break. Inside, I was a complete wreck, anxious and frustrated. No one could see or feel what I was going through, and it was hard to describe. My whole day felt like a constant struggle, a countdown of moments until I could go to sleep. On the third day, I started to become extremely sensitive to sounds and more sensitive to light than usual. I remember sitting in a meeting, feeling like I was underwater, watching people’s mouths move and trying to make out the words. When I got home from work, the tingling started going crazy around my eyes and forehead. My vision started to darken on the edges. My head was pounding. When I realized it was a migraine, I started to panic. All I could think was, I am going to lose my progress. The progress that I have been trying so hard to control and keep is going to be gone when I wake up. I tried to stand up, and the room whirled around me. I bawled in bed until I fell sleep, in pain and exhausted. I woke up 12 hours later. The pins and needles were finally gone. But now I could see the room swaying.
My MRI was normal. My neurologist determined that the pins and needles were likely a migraine aura or part of the MdDS. I never had regular migraines until I had MdDS. After battling the boat for 8 months without medicine, I started taking Cyproheptadine as a migraine preventative. I was able to email Mount Sinai and get home program of optokinetic (OKN) stripes to try to regain the ground I had lost after the migraine. It helped to get some answers and have some things to try. However, the whole experience was kind of traumatic. I was already scared of triggers and bad MdDS days. Now I was terrified of having another week-long numbness episode, too. The future seemed more complicated and more unsure than it had when I left New York, full of hope and positivity for remission.
I struggled for 3 more challenging weeks, full of ebbs and flows in MdDS symptoms and migraines. One day, I’d be rocking, I’d do the OKN stripes for the rocking for 2 minutes, and I’d have low symptoms for an entire day. I would feel so relieved and excited and hopeful! Then, I’d get retriggered somehow within the next 24 hours. Sometimes, the OKN stripes caused frustrating difficulties with head movements or nausea instead of improvements. Sometimes I’d have a good morning, but then my symptoms would creep up steadily throughout the workday. I was still getting migraines, all of them preceded by numbness of my face. I started getting new auras, too, like black spots in my vision. Sometimes I’d be numb, but I wouldn’t have head pain. Stressful encounters left me seeing the world swaying again. I couldn’t hold on to a good day. The bad days felt more devastating after a good stretch.
The inconsistency was exhausting. I felt completely out of control. I would wake up in the morning with no idea what my body would feel like. I was always worried. Should I do this? Do I need to avoid this? Can I make it through this day, this hour, this minute? Is this just routine numbness or is a migraine coming? Why are my MdDS symptoms high today? Why can’t I maintain my baseline?
Changing the Tides
Loved ones, coworkers, and doctors started to suggest that it was time to take a leave from work. At first, I steadfastly refused. I’d had worse rocking than this and pushed through. Even though I feel crappy all the time, I’m still capable physically and intellectually, I thought. I had been working full time for over 7 months with MdDS. I wanted to prove to myself that I could push through it. I worried that other people would think I was lazy or exaggerating or not dedicated if I took a leave of absence. I had this false belief that if I could not keep working that it would mean I wasn’t strong enough or courageous enough. Truthfully, I was more scared to take a leave than I was to keep working.
Then one day, after a stretch of good days, I woke up the next morning to strong swaying again. The sway felt more forceful as the day went on and my frustration grew with it. I walked the halls at work, watching the floors move under me. I felt seasick. The right side of my face went numb. The pins and needles spread to my hand.
I couldn’t take the ebbs and flows. I needed time. I needed more sleep. I needed a break. I couldn’t stop the waves, but I could start taking care of myself in a way I hadn’t yet tried. Admitting this at the time made me feel like I had failed. But it was undeniable that pushing through each day in the state I was in, physically and mentally, was making things worse. I had to take some time to concentrate on healing. I picked up the phone and called the doctor, who agreed. It was time to take that leave.
After 8 months of fighting the boat feelings every single day, my eyes filled with tears at the precipice of a month of rest. Would I go into remission? Would things stay the same? Would a month be long enough to change the tides? I was excited and scared to find out…
… and you’ll have to wait for the next post to find out! I will say that I’m doing pretty well. I’ve missed you! Please let me know if there is anything in this post that you’ve connected with or if you’ve had a similar experience!