Staying Afloat: Things That Help

Here are some things that seem to help me, listed in order of helpfulness, from somewhat helpful to definitely helpful.

(Please note that I am not a doctor and these are not recommendations. However, I do hope readers can find something on this list that could help them, too! I am so grateful to the MdDS foundation, MdDS Facebook support group, and my OT/PT/SLP/MD friends who have helped me find some of these helpers!  I am still trying new things and figuring things out, so I will keep adding to the list if anything else is notably successful.)

10. Sitting in the shower

The shower is such a scary place with MdDS! It was the first trigger that I noticed I had. It’s an enclosed space, and I have to close my eyes under the water which is when I lose my balance. I feel waaaay better sitting while I shower because I know I won’t fall or slip.

9. Alcohol (on occasion and in moderation)

This one was so strange to me at first! Caffeine, a stimulant, makes my symptoms worse, so alcohol, a depressant, has the opposite effect (I assume – again, not a doctor). If I drink too much it can increase my rocking the next day (and of course headaches), but a couple of drinks has helped me deal with crowds and enjoy myself in situations that are otherwise difficult. It doesn’t stop the rocking, but it makes it more tolerable. I have noticed I feel worse the next day from beer and sometimes wine. High quality vodka seems to work best and doesn’t increase my rocking as much the next day. I only drink on weekends because it messes up my much-needed sleep on weeknights, and it can add to the nausea I get from lights. It is not so helpful for me that it would be addictive, but it can definitely take the edge off when used occasionally.

8. Massages

My first few weeks back at work with MdDS were the worst of my life because of my intense symptoms at the end of the week. That’s why I booked a massage for a Saturday morning. When I walked in my symptoms were an 8 out of 10. After the massage they were at a 1 out of 10. I can’t say it helped long term, but it was definitely worth the money for the relaxation and lowered symptoms.

7. Hot Corn Bags

My mother in law makes these “hot corn bags” that you can heat up in the microwave. They help me so much with neck and shoulder tension. I also put them on my chest or head and eyes to help me fall asleep.

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Just cloth bags filled with corn!  Sorry about the patterns.

6. Dancing

I went to a very sensory-friendly “silent rave” a few weeks back. There were colored lights, but the room was fully lit and there were no blinking or flashing lights. I had so much fun dancing, and I realized that it seemed like my rocking stopped. I then kept trying it and realized that when I dance I don’t notice the rocking! I can’t do Zumba or choreographed dances without feeling ill, but just moving around to the beat with nothing to follow helps me. I now dance around my house when I have the energy! I don’t know that this would have worked earlier on in my MdDS.

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All smiles at the silent rave!

5. Tech Accommodations: Flux, Reduce Motion, Night Mode

The Flux program is free, and I installed it on my work and home computers. I can feel that it’s easier on my eyes. It makes everything look orange-ish, but it’s so worth it for the relief.  Get it here: Flux

On the iPhone, Night Mode does the same thing as Flux.  Also, turning on Reduce Motion helps with the scrolling.  You can adjust these things in settings.

4. Weighted blanket

For the past few nights, I have slept through the night using a weighted blanket.  It isn’t super comfortable, and I still feel the rocking with it on, but I’ve SLEPT THROUGH THE NIGHT, people!  There is something comforting about it. I even fell asleep on the couch the first time I tested it out. If it stays helpful long them I will update this post!

Update: I have now been using the weighted blanket for over a month.  I’ve slept through the night ever since.  This went from #10 to #4 on my list.  If I could go back, I would have bought this blanket earlier!

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My weighted blanket is the gray one under the white covers!

3. Light Blocking Glasses

I have tried multiple pairs of glasses now and all of them help somewhat.  I’ll give you the pros and cons. 

The day I was diagnosed with MdDS I went on the MdDS foundation website and saw that they suggested blue light blocking glasses. I immediately searched on Amazon and bought the cheapest pair that came up, thinking this would only be a short-term thing and that I’d be better soon. These have definitely taken the edge off from the fluorescent lights at work and from computers. I actually think they make scrolling a bit easier, too. These are from Cyxus. Unfortunately, they make me look like Tina from the show Bob’s Burgers!  They don’t make blinking or flashing lights easier, and looking at snow in them still hurts my eyes. 

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After realizing this condition wasn’t stopping anytime soon (and the lights were affecting me more), I ordered these glasses from Low Blue Lights (lowbluelights.com). When I first put them on I felt like the muscles behind my eyes relaxed. They block out all blue light completely, even in peripheral vision, which is great. I do think they cut down on the migraines. I wear them before bed and in the car. They are unfortunately NOT attractive. They also alter my color perception completely. Everything looks orange when I wear them, and when I take them off everything looks purplish for a few minutes. I decided to try another pair for daytime use to hopefully find something more attractive that would allow me to see colors normally. 

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My most recent glasses purchase is this pair from Axon Optics. They don’t change my color perception which is great. I have only had them for a short time, but they already seem to help me with fluorescent light and tech light. I feel sick looking at snow in my Cyxus glasses, but wearing these I can look at snow without issues! I still think the low blue lights or plain old sunglasses are better for blinking lights like car lights. A benefit of these is that they look sort of cute!  I have even gotten compliments on them from strangers, so I think they look a little like a hippie-boho style choice. I’ll report back after a few weeks if over time they continue to reduce the migraines.  Four days into the workweek my migraines have been better than with the Cyxus pair, even with significant rocking and moderate stress.

Update:  These glasses have considerable reduced my work-day headaches.  I would totally recommend them for use in places with florescent lights!

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2. Laughter and Fun

The week before I was diagnosed with MdDS was one of the most difficult weeks of my life. I have a wonderful friend who threw me a relaxing get together to help take my mind off things. We ended up sitting around a table and laughing about old times. In the midst of some of the worst rocking I’ve experienced, I noticed that for a few moments things felt still. At the time it was completely unbelievable after the week I’d had. Now I’ve realized that happy times like this can give me some temporary reprieve from the rocking. My rocking is still there most of the time, but it is usually easier to tolerate when I am having a good time and enjoying myself!

1. Sleep and rest

I can’t stress enough how important sleep is. The best I ever feel is when I wake up after a good night’s sleep.  Sometimes I don’t even feel the rocking when I first wake up. If I catch up on sleep during the weekend I usually feel much better throughout the week.  Sleep is my biggest helper!

For my MdDS warriors, is there anything that has helped you that you would have on your list?  I’d love to hear other things that people have found success with!  

Other concerns and ideas floating around in my brain:

Immediately after I wrote my first blog post two things happened:

  1. It snowed.
  2. My visual symptoms returned.

My symptoms in general have been higher than they were pre-blog.  My visual symptoms now come and go (mostly are gone) again, but the cold winter weather has not taken a break.  This weather change can easily be what has increased my symptoms. Or it could be increased time on tech devices. Yet, I can’t help but wonder if focusing on my symptoms in order to write about them has made me unable to ignore them.  Maybe it has moved them to the forefront in my mind, even more than before. I definitely think about my MdDS more, and I’m always thinking about others who are also experiencing it. However, I have also gotten great joy and comfort from connecting with people through this blog and learning that so many of us are “in the same boat.”  It keeps me going and gives me purpose that someone might read this and gain some solace or reassurance or be able to share it to help loved ones understand. Just something I’m thinking about a lot.  If I stop writing or messaging, you’ll know it is because my symptoms are just too high.  

Feeling terrible this weekend after a train ride and thinking about this increase in symptoms, I read an article written by Dr. Hain (read it here) comparing MdDS to tinnitus. He suggested Cognitive Behavioral Therapy (CBT) like the kind patients with tinnitus can receive. Reading this lead me down an internet rabbit hole searching for Cognitive Behavioral Therapy self-help guides for people with tinnitus (because you know how hard it is to find any trained professional who will help you with MdDS). Guess what? I found a FREE copy of one (linked here)!  Some of the techniques seem a little dated, but could still be very helpful. Many things in this book could apply to MdDS if you just changed the words “ringing” to “rocking” and “sound” to “movement.” This definitely wouldn’t cure us (nor would it help with lights or headaches), but it may help us not to dwell on the motion sensations. Anyway, I was contemplating following some of the advice in these chapters and reporting back how it goes. Let me know if this is something you would be interested in reading about!  

Rock on, everyone!

5 thoughts on “Staying Afloat: Things That Help

  1. I totally agree that constantly thinking about your symptoms seems to increase them. Being more aware of them and talking to people about it is sometimes a blessing and a curse. I find that listening to podcasts to try to take my mind off it does help somewhat (mindfulness thinking) and keeping active of course. I’ve cut out caffeine, chocolate, limited my salt intake and just trying to eat healthier overall. I also try to keep positive which is hard but it reduces stress and anxiety.

    Liked by 1 person

  2. Thanks for your post! I have Mdds too and am interested in trying the glasses you described, as well as the weighted blanket. I’m also going to try dancing. 😊 You’ve encouraged me today – so be encouraged in return!

    Liked by 1 person

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