Who would have thought? Some simple Klonopin (Clonazepam) would be all it took to make such a huge difference in my life?
I have complained in the recent past of a noise sensitivity I have developed; loud and sudden sounds like a balloon popping or the sounds of glass dish ware clashing together make me jump. I am alone in a quiet room when someone walks in undetected behind me and says “Hey Matt” causing me to literally jump; nearly convulse for a fraction of a second! My heart drops below my sternum and I wonder “what is this”.
I did all sorts of research for the longest time and everywhere I looked online (when using keywords such as “Multiple Sclerosis noise sensitivity”) I kept finding articles by other bloggers who described exactly what I was experiencing and they all seemed to say without a shadow of a doubt that this was called “Hyperekplexia“. I did some more googling and check a few neurology books and it did not take me very long to figure out Hyperekplexia was not what this was… Hyperekplexia occurs in infants; they experience increased muscle tone and an exaggerated startle reflex as a result of external stimuli such as sounds. After this the infant can become too rigid to move and even stop breathing which can be fatal. Hyperekplexia is hereditary and I believe it usually clears up around the age of 2. Hyperekplexia; close but no cigar. This is a great example of how basing all your online research on other bloggers or wikipedia (as doctors like to say) can be a bad idea if you don’t check multiple sources including published material such as text books. I will always criticize anyone who spreads incorrect information (because in some cases it can be dangerous) so as always if ever I have my facts wrong please point it out so I can triple check!
Anyway, I started hitting the books as I was determined to figure out what this mysterious symptom that was making my life miserable was called. I was not even looking for a treatment really, I just wanted a name, I wanted to put a face to this new enemy of mine. I kept hitting dead ends in my research so when I last saw my neurologist I explained to him that of all my MS symptoms, if I could make just one go away resulting in me having to forever live with the rest, it would be the noise-jumpy thing. “What is this?!? What is it called?!?” I asked. “It’s called Myoclonus” he told me. I nodded my head. It sounded so simple! I should have asked more about it and what (if anything) could be done about it but for what ever reason I did not. Instead I went home and googled it.
There are many different kind of myoclonus and apparently everyone experiences some type of myoclonus here and there. Hiccups are a form of myoclonus; this is funny to me because when I was first diagnosed with MS there were several occasions where I could not stop hiccuping all day for days at a time! Have you ever been drifting off to sleep and starting to dream when you are walking down some path. All of a sudden you trip and start to fall in this dream causing you to (back in the real world) kick your legs in your bed waking you up? That is a form of myoclonus called night starts. Again, there are many different types of myoclonus mostly involving some sort of muscle twitch (like how if I don’t take Baclofen at night my shoulder will start to twitch causing me to wake up and become unable to fall back asleep) but this sensitive startle reflex thing? It’s called “Stimulus-Sensitive Myoclonus” which basically means you are sensitive to external stimuli such as loud noise, movement, and light. These stimuli cause an involuntary muscle jerk (such as the way you jump when you are startled).
Myoclonus can be caused by a variety of things but what I will focus on here (for obvious reasons) is brain and spinal cord injury. I can’t really say it any better than The National Institute of Neurological Disorders and Stroke said in this quote; “For example, myoclonic jerking may develop in patients with multiple sclerosis, Parkinson’s disease, Alzheimer’s disease, or Creutzfeldt-Jakob disease”. So let’s see, Hyperekplexia? ZERO. Myoclonus? ONE.The best part is this; The first drug of choice is Klonopin (Clonazepam)! I used to be on Clonazepam for Restless Leg Syndrome (RLS) when I was first diagnosed with MS and it worked great. This gave me high hope because if I responded well to this medication all those years ago then surely I would respond well this time as well! So the next day (the day after my appointment with my neurologist) after my 13th Tysabri infusion, I stopped by my neurologist’s office and asked if I could try some Klonopin if he thought it was the right course of action. 5 minutes later one of his nurses walked out with a prescription for Clonazepam, 0.5mg twice a day. I have never been so excited to be handed a prescription! $2.30 later (for 60 tablets) I tried it out; I didn’t feel drowsy like everyone warned me. As the day went on I didn’t feel as bothered by the sound in the house. I mean sure, I didn’t like them like music but they didn’t seem to bother me. I kept putting myself in situation that I usually tried to avoid. “Maybe all the quiet employees at Starbucks are working today”.
About a week or so later I have yet to encounter any sort of sound that has made me jump. Still I don’t feel tired, in fact, I ironically feel more energetic throughout the day! I think because I can get through the days feeling relaxed instead of stressed and on edge from all the noise, I am sleeping better! I have been waking up before my alarm goes off in the morning and I immediately feel ready to jump out of bed an go, go, go and last night I actually went to bed without the TV on for noise to distract me from the sounds leaking through my door and my many random thoughts. I have been sleeping with the TV on at night since my stay at the physical rehabilitation hospital in 2012. Last night I simply had a fan on and some solo piano music on my phone (Calm Radio) that turned off after about an hour. Today I again felt full of energy; fully rested, something I forgot the feeling of!
With all this energy I good cleaned the garage, cleaned up and secured all the wires for the lighting in there, threw a bunch of stuff out, organized all the tool boxes, set my work bench up for the first time in years, modified the two DVD holders we have in our closet and bolted them to the wall one on top of the other, rearranged the gym in our loft, installed a light fixture on the celling, hung a 35 pound mirror, fixed a table I broke a while ago, set up a TV in the gym, did laundry, cleaned my fish tank out, cleaned my room, replaced the light bulbs to the light fixtures outside on either end of our garage, and I am sure I did lots of other small things! In the last few days I probably got more done than I have in the last couple of months! Oh yeah, did you catch it? A few of the things I did required a ladder! I can’t remember the last time I was able to climb a ladder and do work! Thanks to physical therapy my balance is getting so much better! I am still not climbing a 24 foot ladder or even a 12 foot ladder but 3-4 steps up an A-frame ladder when a few months ago I couldn’t even stand on a stool? Felt great! Once again, I am thinking I am pretty much ready to return to work!