“Does anyone else fight noise sensitivity due to their MS?”
One of the first topics I came across in an MS group that I completely related to. Given how Multiple Sclerosis affects everyone so differently, one of the symptoms individuals with MS can have is hyperacusis. Hyperacusis is a disorder in loudness perception, causing pain and discomfort in certain ranges of sound.
At this point in time, I was about three months post-diagnosis with Multiple Sclerosis when I noticed this irritation related to sound. My husband, John, and I turned into full-time homesteaders when my unexpected relapse put us in a bind with our then flourishing–yet insanely stressful–business. During this time I noticed this sensitivity to sound more. It was one thing to be constantly traveling, being around a lot of different people, squealing pigs, the normal road sounds.
But now we were back on the homestead where it was quiet and still. A totally different adjustment. To the point where it seemed like my noise threshold reset, just as my stress threshold had reset with a more simple lifestyle.
The only thing that didn’t make sense, was my brain lesions weren’t in places near my cochlear nerves.
The First Year with MS
My first year post-MS-diagnosis was hard. The first year after any life altering diagnosis or situation is. I went through the stages of grief nearly every day while my new body fought against me. John found a new passion that kept his hands busy while I struggled to find and accept a new normal. I stumbled into an MS campaign to spread awareness and my own story as a newly diagnosed patient. We started our first vegetable garden that spring, primarily growing luffa because I decided I wanted to make soap and have natural loofah sponges.
Life was simple.
During that summer, my husband started coming across people on TikTok talking about their struggles with ADHD. The more he watched these short clips, the more he went down a rabbit hole. Every so often I’d get a text with a video from him asking, “hey, is this me?” and I’d watch it and be like “yeah, that’s def you.”
And secretly, it was me too.
But I wasn’t about to admit that.
I was still trying to grasp my life with a neurodegenerative chronic illness. There was no way I was going to add more fuel to a confused fire.
“You Have ADHD Tendencies”
I was in a therapy session with a Psychologist I have the most respect and admiration for.
I laughed and brushed it off.
And then I told my husband and we both laughed.
But then I jumped down my own rabbit hole, doing what I do best: reading and research.
The Rabbit Hole
I joined a few Facebook groups. That began the first wave of overwhelming evidence people like me existed.
Then the Google searches started.
The first four letters consisted of ADHD with a string of other words including:
- noise sensitivity
- light sensitivity
- Rejection Sensitive Dysphoria
- time management
- racing thoughts
The more I researched, the more symptoms I realized I had. Some I could easily trace back to my childhood in elementary school. I wasn’t the fidgeter or talker in class. I was the one too scared to get a B or a C that I put all of my energy into my school work to not disappoint my teachers or parents.
But wait! There’s more.
I did this school work so well under immense pressure. Like, the night before the work was due pressure.
As a teen, I got hooked on computer gaming. It was fun. I got lost in the digital world. Late nights gaming to 24-28 hours running acts with new online friends. Ask my mom how difficult it was to pull me away from some stupid ass trying to duel my decked out Javazon, Hammerdin, or Nova Sorceress on Diablo II.
Each time I’d have an appointment for therapy, I was stuck in this rut of wanting to do so many things, starting all of them at the same time, but never having enough energy to complete any one of them. Or I’d switch gears by the next therapy session and be onto a shiny new idea. And then by the next session that last shiny idea frustrated me so I quit it altogether and was back to the first five ideas the session before.
During one of my emotional breakdowns, I told my Psychologist I had so much on my plate and didn’t know how to do any of it. I had piled responsibilities and said yes to more than I could humanly handle. I was attempting to grow the business into an online coaching/consulting service because I felt like I had failed hundreds of clients because my illness took us off the road from traveling and working with their animals. The second part to that was also drafting a book series for mini pig owners.
Meanwhile I was studying how to become an online fitness trainer. Oh, while also finishing my Nutrition Coaching certification. Plus, I began training in person at a local gym to compliment my soon-to-be new certifications which seemed like the logical step to take. At the same time was helping John grow his wire tree art. Then in the midst of the worst of it, decided why the hell not launch a house call dog nail trimming service?
In addition to all of this, I was also acting admin assistant of designing graphics, editing videos, writing social media content, responding to comments/messages/emails for all of the above.
But wait! There’s more.
I had piled all of this on top of myself while caring for our animals, attempting to remember to drink water and eat, catch up on piles of laundry [that never got hung up], day-to-day cleaning, and any other random project or urgent matter that presented itself at any given time on the homestead. Like being so excited to get snuggled up in bed and taking the dogs out for the last time at 10PM only to hear a lamb bellowing on the wrong side of the pasture, so now we gotta rescue the lost lamb walk it over and find its mom in the barnyard.
So yeah, I was at an all time high-strung low. I was stuck. It was paralyzing. Yet my brain kept saying “here, add this to the task list so you’re not worthless! This is what productivity means!”
He offered to refer me to a Psychiatrist he trusted.
He knew I didn’t like medication. It was so difficult for me to even consider a disease modifying therapy drug in hopes to slow my progression of MS.
The last thing I wanted was a cocktail of medications and their side effects.
The first medication I was prescribed was a low dose of Adderall. In the beginning it was amazing. I felt alert but calm. The racing thoughts weren’t there. The second evening I told my husband it was like I was in the driver’s seat of my brain and the small voice of anxiety was in the passenger seat. I could turn the music on and drown it out if I wanted to. But day three was a different story. I was overly sensitive to noise. I was so focused on things that I lashed out when interrupted. It was a similar feeling to when I was on steroids during my relapse. The rage was real. Adderall was a no-go.
The second medication I tried was to help get the anxiety in check. Ativan (Lorazepram). It’s a central nervous system suppressant. Part of me was intrigued because maybe it would help my cluster headache symptoms if my body was unable to be a drama queen by being too relaxed to ramp up an attack on itself. Problem is, the lowest dose over-sedated me for well over 24-hours with a pretty severe side effect happening in the middle of the night: I stopped breathing.
A few months prior my primary doctor had written a prescription for Zoloft for depression. That medication triggered severe migraines to the point of dizzying nausea and I couldn’t manage working through the first two to three weeks of what everyone told me was the “worst” of it until the body adjusts. It’s a scary game to play when any type of inflammation can trigger an attack on my nervous system. No medication is worth a relapse and dealing with steroid rage if I can help it.
So at this point, I felt defeated. It was like my body was setting me up for failure. I already knew trialing medications may take time to find the right fit, but it still felt like I was broken before deciding to take the step toward seeking additional help, and then I was more broken because my body was responding with severe and more rare side effects to medications on the tiniest of doses. Together, my Psychiatrist and I decided we’d pursue more of the ADHD symptoms over the anxiety. I felt like the Adderall was close had I not gotten the rage side effect because my anxiety wasn’t at the same intensity as it normally was before day three.
Third Time’s a Charm
The third trial was a super low dose of Ritalin with a gradual increase over the next three weeks. If a person doesn’t respond well to Adderall, sometimes they do better with Ritalin, and vice versa. At this point I was a little hesitant, but at this point I didn’t have anything else to lose. What was another couple of weeks of possible stuck-in-a-rut-ness should I have any negative side effects?
Except this time there was clarity.
I was in the driver’s seat again. My internal monologue was there, but much quieter. The simplest days’ tasks weren’t daunting. I could start a task and switch if needed without frustration. The noise sensitivity was less. I was still me but more focused and purposeful in my actions. The next therapy session, both me and my Psychologist were beaming after I told him how everything had played out and the current medication is working thus far.
Medication itself isn’t the end-all. It’s not the magic cure for ADHD. There’s more to it when it comes to the way my brain is wired. Now that we have a starting place, next comes finding the tools and learning the strategies that help me manage everyday tasks and unexpected events that can pull me into a downward spiral. Seeking treatment and help for ADHD has been one of the hardest yet comforting moments of my life. There is a level of sadness from this because I had been living a lie trying to fit into a box society, family, and peers had shoved me in. It was no wonder I struggled with the simplest of things and often did what I do best: play ostrich.
Everyone saw me as that wanderer that lived a “full life” of various experiences, jumping from job to job. Even more-so when John and I began traveling all over the country with a strange career choice trimming pig hooves. Truth is, it was the biggest dopamine rush to plan routes, announce a new area, and see the trip fees coming in. For John, his rush was the thrill working with unpredictable animals and the severely overgrown cases.
But the stress finally outweighed chasing the thrill, and we were forced to stop and look at the chaos we put ourselves in.
Now we’re more mindful of checking in on each other. Instead of enabling each others’ “shiny new” impulse purchase, hobby, or course, we rein each other in first to see if it’s helpful for the current to-do list or a distraction. We’re both still learning, and mistakes will be made, but between the support of each other and our medical support, things are much more manageable in our little homestead with two ADHD adults.
Advocate for Yourself
In my early days while we were suspecting but didn’t know I had Multiple Sclerosis, I read so many articles that talked about advocating for ones’ health. Sometimes it’s hard. A lot of times it’s met with resistance and road blocks more often than not related to doctors not listening. I’ve had my fair share of incompetent doctors in my short MS journey that began in July 2020. I’ve had my fair share of negative experiences with mental health professionals over the years as well. The stigma surrounding mental health doesn’t make it easy sometimes to take that first step. Seeking help for ADHD has been an eye opening experience.
But I promise the good ones are out there. The ones that listen. Doctors and nurses who follow up and check in. It takes asking for referrals, being persistent, and in some cases, being patient. Take charge of your mental health and well-being and advocate for yourself. You know your body better than anyone else. 💋