When deciding to attend my first concert since 2010 I was excited, but wary. Music has always been a fundamental part of my life and mental well being. Being disconnected from music while dealing with too many neurological symptoms to tolerate it was a special sort of hell for me. Even once I was well enough to tolerate listening to some music at home, live music seemed like an assault on the senses and something I would never be able to enjoy again. I knew from a couple of attempts at seeing local bands at outdoor events that this activity wiped me out like no other, even when I just sat and listened. When I began researching mast cell activation syndrome (MCAS), I came to understand this might be due to the way my mast cells were reacting to vibration, but I decided to take my chances anyway. Today, I want to share with you how that experience went, how I prepared for it and what I might do differently next time to help you get the most out of your concert experience.
I’ve been doing better than I have been in a long time and an outing of several hours where I can both sit and stand is certainly manageable despite having multiple disabling chronic illnesses. With the help of medical procedures, diet, exercise, supplementation and the medications I take, my fatigue levels are much lower and many of the symptoms that used to be a constant in my life; migraines, dizziness, weakness, vomiting, chronic pain and brain fog are mostly well controlled and only occasional visitors now.
Despite all of this improvement, I’m having a hard time controlling my MCAD reactions and symptoms (which I assume is probably MCAS since it fits well with my EDS and POTS dx, but I don’t begin testing until August 29 for diagnosis). I’ve had these problems for years, but in much smaller scale. That is until this spring when I began reacting as if I were allergic to almost everything in the known universe.
I’ve been on a mast cell mediator called quercetin for about 3 months now. The longer I take it, the more my symptoms improve. I still cannot leave my house without wearing a mask and my diet is very restrictive, but my reactions aren’t quite as severe. I no longer have to take Benadryl regularly, instead reserving it as the rescue med it should be unless I know I’m going to be exposed ahead of time. It seems like each week there’s a bit of improvement in how I feel overall and the amount of time it takes me to recover from exposures. Going to a concert on July 31 didn’t seem like that big of a risk. Luckily I turned out to be right, but I did still have a reaction and I’m at a loss to say it was caused by anything other than the vibration I experienced.
To prepare for the concert, I took benadryl, along with extra zyrtec, flonase and ketotifen eye drops. We got lucky and pollen counts were nil due to regional rainstorms so I didn’t have to wear my mask on the drive from Northern Kentucky to Indianapolis. I put my mask on as soon as we arrived at the venue, as I knew I would be exposed to a variety of colognes, body products and cleaning agents. Without a doubt, I made sure I was well protected. Since I was a little worried about the sound levels and getting a migraine, I took ear plugs. I wore them through the opening act (and frankly would have appreciated better ones to drown them out), but the theatre kept the sound levels at acceptable levels and I was able to remove them for the main attraction.
Since I still react to food so easily and can no longer process carbohydrates or fatty meats due to GP, we no longer attempt to eat out unless there’s absolutely no other choice and we never combine it with other activities if at all possible. The potential to ruin things with a bad meal is just too high. We ate an early dinner before leaving and I packed snacks from home, consisting only of things that I eat every day. Since I am a POTSie, I also packed Oral Rehydration Salts and dressed in layers, just in case I started having issues with blood pressure fluctuations and dizziness or difficulty regulating my temperature and made sure I was well hydrated.
As usual, I stocked my traveling pill case to ensure I had everything I needed; benadryl and asthma rescue meds, pain relievers and muscle relaxers, extra midodrine just in case the ORS isn’t enough, triptans for migraines and an antiemetic. I store all of these things, along with my ORS, mask, tissues, eye drops and nasal sprays in an over the shoulder purse or body bag that never leaves my person.
Even though it was a 2.5 hour drive and we knew the concert would go until 10 or 11, we opted not to stay overnight, because this simply presented too many complications for me at this point. I was worried about reacting to everything from the hotel linens to being able to get safe foods to eat. I stand by this decision, as I believe it helped me to keep my total exposure down to whatever got through my vogmask (which is very, very little) and the vibration I experienced from the loud music.
I’m sure 5 hours of driving contributed to my fatigue, but two 2.5 hour drives with a concert in between wasn’t overly taxing. We took a break going in each direction and made sure we stayed hydrated. It may seem strange, but I opted to drive on the way there. I feel better when I’m the driver in a car rather than the passenger. This doesn’t make sense when considering that mental exertion can be just as taxing to an EDS body as physical exertion, but I believe it works better for me because keeping my arms on the steering wheel actually helps me to maintain better posture than I would sitting in the driver’s seat playing on my cell phone or whatever. I always find myself uncomfortable, shifting to find a better position and putting my feet up on the dashboard, which sometimes hyper-extends my knees and hurts my ankles, even if it does assuage my POTSie symptoms. No matter how I try, I always come out of the passenger experience in more pain and fatigue than I do when driving.
We gave ourselves plenty of extra time to get there, both in case traffic was bad and so I didn’t feel stressed out about making it on time. As a trifecta zebra, stress will put me into a flare faster than almost anything. Feeling in control in the driver’s position with plenty of extra time really helps to dissipate those tensions.
Arriving at the Concert
We got there about 45 minutes before the concert started and it was perfect. We were able to get good parking in a lot right across the street and we had plenty of time to gather our things and calm any butterflies. My husband and I both have anxiety about crowds these days, so we like to ease into these things. I took a dose of Benadryl just before going in and chugged down a little water to ensure I was well hydrated before snapping a couple of pics and heading inside.
I was distracted by the crowds and forgot to put on my mask until after we were already inside and I got a big whiff of cologne. I ran from the cloud and donned my mask. We got a drink and sat in our seats, getting acclimated to our surroundings and admired the beautiful old theatre. I put in my ear plugs and prepared for the opening act. We were both freezing and I was grateful for my shrug.
Everyone remained in their seats for the opening act, so I took the time to relax. Once Erasure came on stage, everyone stood up and I did, too. I was a little worried about spending too much time on my feet, but I felt pretty comfortable with it and wanted to see them perform. Erasure is a group I’d wanted to see since I was 15 years old and I fully intended to enjoy it. I removed one ear plug and was pleased to find that the music wasn’t overwhelming at all, so I stuck my ear plugs in my pocket. Soon my shrug came off, as I started moving to the music and sweating.
After a while, I was all out dancing. I felt great and I could hardly help myself. The energy was amazing and I really couldn’t have asked for a better concert to start with. I could tell all my exercising had really paid off. I felt strong and in control of my movements. Still, I was careful not to bounce on my feet or jump around for fear of jamming or dislocating something and ruining things.
We sat when we needed a break and rejoined the reveling when we were ready. I felt great and I think I actually spent more time on my feet than my husband did. I sang and shouted through my mask and laughed when people stared at me and my mask like I must be crazy. I didn’t care what anyone thought. It was my night and no one and nothing was going to ruin it. I cried for the joy of it all.
After the Concert
On the way home, I still felt great, though the fatigue was starting to catch up to me. I let my husband drive home so I could nurse my growing pain and eat something. We talked about the concert, listened to music and sang too loud all the way home. Neither of us suffered any hearing loss and we both felt pretty good.
I had a terrible time sleeping when we got home around 1 am and it was well past 4 in the morning before I could sleep. I woke after only 5 hours. I was sore and fatigued and starting to feel a bit like I’d been pummeled by all that beautiful music. By the afternoon my head was pounding with an all over mast cell headache. My back was bothering me a bit and my head itched terribly, but I didn’t pay it much attention until later that night when I went to scratch my back and felt three giant cysts growing there. I looked in the mirror and realized my entire back was covered in cysts and hives. I took a double dose of Benadryl and my husband covered my back in hydrocortisone cream, which calmed things down fast.
For two days, I experienced a variety of symptoms, from nausea and diarrhea to a stuffy nose and eyes that wouldn’t quite focus right. My symptoms seemed to run the gamut and include every system of the body. My dysautonomia flared and I grew dizzy, anxious and bone-weary. I wasn’t sleeping well. My brain fog even increased, making it harder to concentrate or remember things, while my nerves lit up here and there, causing sharp shooting pains at random.
If you’d like to learn more about how mast cells react to vibration, this study on vibrational urticaria gives a great details and discusses the genetic origins for vibrational urticaria that isn’t a part of MCADs. This Wikihow does a nice job of breaking down ways to help treat a vibrational urticaria reaction, which for some, is a genetic disorder that’s not associated with MCAS. It proposes much of what I’ve written here, along with taking warm showers instead of hot, avoiding the use of soap, and using cold compresses in addition to oral meds and creams to calm hives and pumps that occur as a result.
Putting It into Perspective
Luckily, this little firework display of symptoms didn’t last long, nor did I have to continue taking the Benadryl for long. After 72 hours, I mostly felt like myself again. Had I attempted a concert back in April before I began to get things moving in the right direction concerning my mast cell issues, I have no doubt the payback would have been much worse. Perhaps in a year, assuming I have things under even better control, it’s possible that the payback will be even less. Even if that’s not true, so long as my baseline is somewhere in the neighborhood of where it is now, I would do it again with barely a hesitation.
My advice to anyone with the trifecta who wants to enjoy loud events is to consider not only what kind of payback you might anticipate, but also what the experience itself will do for you. As zebras and spoonies are so often denied so many experiences because of our vast limitations, sometimes we just have to say fuck it and pay the consequences so we can soak up the joy until it all comes crashing down. Of course, there are smart ways to do it and then there are those ways which will put us down for weeks. Had I not prepared well, had I decided to eat out, to leave my mask behind or get that hotel room, I’d probably be writing a very different article. DO the things you love most, but find ways to do them that work better for you. Pick the periods when you’re doing particularly well. Prepare. Keep your exposures to an absolute minimum. Take notes for the next attempt. They may still turn out to be hard on you, but you could take the recovery time from weeks to just days.
I can compare this experience to going to a Bengals game just a couple of years back. I attended that game in a wheelchair trying to cut down on payback. It took me weeks to recover and I held on for dear life just to get through it; not the most enjoyable of experiences. I had prepared, but I wasn’t treating my MCAS (if anything I was in denial about having it), I ate at the stadium, and I had no idea that vibration was affecting me this way. If I had a skin reaction after that game I don’t remember, but I certainly wouldn’t have connected it with the vibration of stomping, screaming fans and the loud speakers placed throughout the facility blaring music and announcements.
Finally, If you haven’t been diagnosed with MCAS, but this all sounds familiar to you, get tested. Don’t wait until you’re in a state of constant reaction like I did. There are many things that can substantially improve MCADs and the earlier the intervention, the better the outcomes.