MS, MRI and Claustrophobia: How to Rock It!

Since multiple sclerosis is a disease which attacks the Central Nervous System, the only way to assess the damage is by a so-called magnetic resonance imaging (MRI) scan. Until this MRI scan I had no idea that I had claustrophobia. This article will tell you about my experience and give you ways to cope with your claustrophobia when you need an MRI.

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Multiple Sclerosis and MRI

My MRI with Unexpected Claustrophobia

Before and after I was diagnosed with MS in 2017, I have had at least four MRI scans, and they were very “boring”. Usually, I would go in, change into fashionable clothing and lay down on the narrow bed. They would slide me into the tube, I would relax, listen to music, go to my happy place, meditate, and be totally fine. So I didn’t expect any issues for my most recent MRI scan.

MRI Scans are Boring

While they were inserting the IV, I was joking with the technician. He asked “Have you had an MRI before?” I replied “Oh yeah, it’s mostly “boring””. Overconfidence for the win! Little did I know that I would experience my “Never boring” life to the fullest this time.

I laid down, they put ear plugs in my ears, a mask over my head and I was fine. Until they started moving me into the tube. Suddenly I was not fine anymore.

Panic! The Sky is Falling!

The sky was falling! The walls, they were crushing me! Taking deep mindful breaths helped a bit, but oh boy, did I have a feeling of panic. My amygdala kicked in and urged me to “GET OUT!!!” GET OUT!!!” You are being smothered. Danger! My mind knew that I was just having an MRI but my instinct did not agree with that at all.

I simply could not relax and calm myself, even although I was able to stay still. But this was with the highest level of effort and not pleasant at all. So much for my cocky “MRI scans are boring!” So much for my “I am an old hat at this”

Missing Music

All the other MRI scans I have had, they offered music. So I decided to ask for music, which was just as much about hoping it would help, as it was about getting a break from my panic. Regretfully they told me that this particular MRI room did not have an option for music. So much for that solution. I still needed a break.

Get me OUT of Here

Even although I had a panic button, I convinced myself not to press it. The combination of having done successful scans before and my fear of prolonging the misery held me back from “officially” panicking. It did not prevent me from panicking inside my head though. The banging “They are hammering down the lid on my coffin!!” “They are burying me alive!” By then I was crying.

And the next time they asked are you OK, I confessed “No!” “I need a break” “Like NOW!”. They were very nice about it. Reassuring me that unexpected claustrophobia happens to a lot of people during MRIs.

Offering me a mirror. Although they couldn’t figure out how to attach it, so we scrapped that idea. Offering me a wash cloth over my eyes. My reply was that that only would make things worse.

Eventually they asked “Are you ready?” and I said “No, but let’s do it anyway.” Back to misery. Back to listening to them hammering the nails into my coffin. Listening to water moving around and imagining sinking into deep water.

Simply said, I was miserable, panicking and none of my normal coping techniques worked. I was crying but still holding still. The seconds felt like hours. The minutes felt like days. They had to redo some of the scan because of anomalies. He reassured me it wasn’t me being the anomaly but something in the machine. Likely story…

Afterwards: a Healing Hike

Finally it was OVER and I could get out. Because I was dizzy, I sat on the side of the bed for a bit till I could get up and RUN out of there. We talked about my experience and they reassured me that it was OK and that this happens quite often. They also recommended to ask for a Bore machine next time, and to talk to my doctor about my sudden claustrophobia.

When I got back into the changing room, I had myself a good cry and decided I needed to be outside to clear my head. Walking outside in nature helped me, until I came to a brook I couldn’t cross. Gave myself an action point about writing to the hospital to make this trail more accessible to people with gait disability and turned around.

Meanwhile I calmed more and more and felt the power of mother Earth hugging and grounding me. Going outside was the best decision. And I acquired steps for my personal goal of 10,000 steps that day. A win-win for sure.

For lunch, I consoled myself with my favorite bagel with cream cheese, lox and wasabi. By then I was feeling totally “normal”, although still shocked about my experience. After eating, I took the bus to our local library to work on my blog and start writing about my experience.

Tips to Deal with MRI scans and Claustrophobia

As a result of this experience I did some research to find out ways to deal with my claustrophobia next time. Since I am not the only one with this problem, it wasn’t hard to find good ones.

1. Talk to your Neurologist and Radiologist

When your healthcare providers are aware of your fears, they can give you a mild sedative helping you cope. In the past, I always convinced myself “I don’t need it, I am strong and capable and can deal with a simple MRI”. After this last experience I am totally going to find out what I can take to help me relax, be it valium or versad. Although it feels like an easy cop-out, it really is recognizing my limitations and using the help that’s available.

2. Breathe

Even we all know that slow and deep breathing can calm us down, it is not always easy to remember in the face of panic. I suspect the only way I got through my last MRI experience with unexpected claustrophobia was by consciously focusing on my breathing as much as I could. The radiologist kept reminding me to take deep breaths and somehow I made it through.

3. Go to your Happy Place

While you are laying there and wanting to be somewhere else, think about a place that makes you happy. Whether it is the hustle and bustle of New York City or a beach in Bali, imagine being there. Look around and take in what you are seeing. Imagine the smells, the sounds, the feeling of the sun on your body. What birds do you hear? What will you have for dinner?

Touch a whale, walk in the treetops, bungee jump off the Space Needle! Anything but being buried alive…

Yeah, I know it is easier said than done, but try it and feel yourself relax.

4. Cover your Eyes

Many people find that covering their eyes with a sleep mask or a wash cloth helps them to tolerate the MRI. For me, it would have made it even worse, so think about what would work for you. It sounds like “just pretend you don’t have claustrophobia”. I am including it because it does work well for many people.

5. Listen to Music

Usually radiology departments will have music available to communicate with you and to let you listen to music. In our local hospital it seems that they use Pandora or similar, since the songs are interspersed by advertisements. Given the cost to us of an MRI, you would expect that they could pay for the version without ads. But even with ads, I know it helped me tremendously to get through my MRI.

6. Ask about Different MRI Scanners

Not every scanner is created equally. Over the years there have been many improvements to the dark tunnels from yesterday. Scanners are ventilated and wider, but even with these improvements some people can’t cope. Enter the totally open MRI, the Open-Bore MRI, and the sitting or standing MRI.

The totally open one still requires a patient to lie down, but does not completely enclose the patient. There is no tunnel involved. The Open-Bore has a tunnel, but the opening (or “bore”) is wider and much shorter hereby making it easier for patients who are claustrophobic to have MRI scans, without sedation. The sitting or standing is good for patients who are very claustrophobic or can’t lie down on their backs. Compared to the others, the biggest disadvantage is the lower image quality.

Virtual Reality

An interesting new option developed at the University of Michigan is a Virtual Reality application that simulates what it is like to get an MRI. Knowing exactly what to expect decreases the anxiety level that patients feel about their MRI. The team explains

VR has been used to successfully desensitize patients with phobias for many years by providing them with simulated realities where they can safely learn to tolerate the things that they fear on their own timelines. Inspired by this success, the team hopes applying VR to MRI-related claustrophobia can improve patient care.

Jina Sawani December 03, 2018 6:00 AM
Virtual Reality App Could Diminish MRI-Induced Claustrophobia

They are still testing and developing the application, but it gives hope for the future.

MRI’s and Claustrophobia

In conclusion, there are many ways to deal with MRI-induced claustrophobia. It might take some time and experimentation to find out which way works best for you. Have you had MRI scans? What did you do to help you stay still? Please share in the comments.

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