MS and PTSD: not all in your head

Angry woman shouting

Life with MS is an is an ever-changing intimate tale of loss and redemption and of love and forgiveness within your relationship with yourself. Not one day should be the same, and not one minute can go lost to idle words or feelings.

As many of you already know, psychology has been a major part of my life for as long as I can remember. In fact, my MS diagnosis came right after the start of my second year into a part-time BA (Hons) Psychology programme. On the advice of my neurologist, though, I deferred to give myself time to get used to having MS, but I never returned as I couldn’t afford the cost and energy anymore to finish such an intense course. To stem the voice within me asking for more and in defiance of my diagnosis, I did a shorter course in counselling and earned a diploma with merit. Still not satisfied with what I learned already, I am currently enrolled in an online Advanced CBT course.

In short, I love the brain as an awe-inspiring paradox because, in certain illnesses, it uses itself to heal itself. It’s potential is never-ending, hence neuroscience being such an exciting field that continues to find new facts about its strength and resilience.

But, what if your CNS (central nervous system) and multiple sclerosis suddenly became the cause of not only anxiety or even post-traumatic stress disorder, brought on by one of your symptoms?

How do you deal with symptoms so debilitating you feel frozen in time and unable to get unwanted memories wiped from your memory?

January 2018 began as every January with medical check-ups ranging from visits to my GP and the hospital. I have a wonderful medical team that tries to integrate everything related to my MS, my eyes, heart issues and this time, also the dentist. A tooth chipped off during the Christmas holidays required extraction for fear of infection or triggering an MS relapse.

Anyone who lives with trigeminal neuralgia knows dentists reside in a bottom drawer of an old garage cupboard that is never opened unless no other help is available. My dental records, therefore, show I require that little bit of TLC that others don’t receive because of agonising symptomatic TN. Extra request: a rubber hammer to knock me out cold throughout the whole procedure.

When I helped the dentist remember this, she laughed and said my method of being rendered unconscious was not yet added to the price list hanging on the front door. But, she agreed that because of my TN, a dental surgeon would extract the tooth instead of her.

Thirteen months ago, I was only half confident I would be OK. Facial pain really is a bitch, and just to be sure, I informed the dental surgeon twice before the procedure.

Just to be sure

It turned out to be the most painful extraction I’ve ever experienced.

It was also the worst bout of piercing, electric-like facial pain I’ve endured since my first trigeminal attack 14,5 years ago.

During the procedure, I tried keeping track of the number of local anaesthetic injections going through my gums and cheek but lost count after eight or nine. If it were up to me, I would have injected the whole batch of anaesthetics because any extraction is utter torment.

But then, while trying to lift the molar out of its dental socket, the mandibular nerve was hit near the bottom of my cheek. It sent an acute, unbearable electric shock-like pain to the middle of my chin and back again before its stimulus even had time to reach my brain. I shrieked and instantaneously pushed the surgeon’s hand away. In that half a second of shock, I could not go through having more excruciating lightning strikes going through another area in my face.

The Scream, the famous painting by Norwegian Expressionist artist Edvard Munch in 1893 currently used to represent trigeminal neuralgia by advocacy groups, instantly came to mind. I opted for the TN slant of the painting instead of Munch’s possible reaction to his sister’s commitment at a nearby lunatic asylum.

Edvard Munch The Scream
The Scream, Edvard Munch, 1893

This was TN in sheer grandeur, on two different sites on the left side of my face and gloriously laid bare in a dentist’s chair. I was trembling all over, holding on to the chair until my knuckles were ashen and the rest of me turned into a panic from that moment onwards, not exactly endearing myself to the surgeon and his dental assistant.

Tears were rolling over my cheeks and didn’t stop until I was home forty minutes later.

Only a handful of people have seen me cry in the 14,5 years I’ve been living with trigeminal neuralgia and multiple sclerosis. When I did, I had to end it as soon as possible for a practical reason rather than an emotional one: “Oh hello, more trigeminal neuralgia pain because tears are equally enamoured by its sensations!” I, therefore, had to condition myself to not take TN that seriously, making it easier to banish crying altogether even when I am in utter agony.

So I don’t cry

At least, I try not to.

Perhaps the lamenting at the dentist was a sign of a bruised ego for my perception of personal weakness, but it was more than this.

I just don’t cry for 40 minutes for no reason.

It put past trigeminal neuralgia events to shame.

Perhaps it was the realisation I had more dental work ahead of me, a realisation that welled up faster than I could process this bout of anxiety.

But, that was not all.

Three months post-extraction, I still had a numb chin and lower lip, which meant there was no sensation following the involuntary near-knocking out of my dentist when he set my chin on fire.

Depending on how your pendulum of positive thinking swings, poetic justice tasted rather sweet knowing that at least for now, my chin was out of the running.

Sadly, this wasn’t the end of the affair, either.

When the next appointment reminder arrived by text message, I felt my chest tightening up and I became distressed at having to go through a similar event again. The following few days and nights anxiety came back, again and again, making the already painful facial nerves worse. Panic kept flowing to the front of my mind each time something reminded me of the chair, electric shock-like pain piercing my chin and my apparent lack of strength.

Shortly after the inauspicious change of DMT from Copaxone to Avonex and the related side effects were alarming if not unnerving, I saw my primary care physician. I told her about the dental event and the anxiety that followed, to which she replied, “Willeke, what you have been experiencing is PTSD.”

I would have been happy if she would have said what I experienced, was a one-time panic attack.
Up till then, I had never even considered post-traumatic stress disorder because of MS.

The truth?

I didn’t look for it because I had no need for it. I am 1000% against self-diagnosing mental or general health issues. Many people who chase symptoms online create a false narrative that suits them best at that moment in time no matter how unlike their googled results and eventual diagnosis by a physician will be. What people who self-diagnose don’t realise is this: what they read online is in many cases so, so different than what a physician or therapist right in front of them will see as cause, symptoms and/or diagnosis.

Hence, MS and PTSD were never really on my radar.

After the chat with my physician, I began reading about the definite link between both, and according to VerywellMind, “Experiencing a life-threatening illness or severe medical condition such as MS is one event that might place a person at risk for developing PTSD.”

Such an event can be life-changing for many people who are today sitting in their neurologist’s waiting room, hearing those three words, “You have MS.” From my personal experience, my diagnosis was a relief knowing what was wrong rather than a traumatic event. The trauma arrived later once everyone had been told and I was alone and left listening to myself at night. But, while the adage goes that no two people with MS are alike, we differ in how we react to our new normals.

According to VerywellMind:

“Being diagnosed with MS can be considered a traumatic event. The Diagnostic and Statistical Manual of Mental Disorders (DSM-5) defines a traumatic event as a situation where you have experienced, witnessed, or have been confronted with an event where there was the threat of or actual death or serious injury. The event may also have involved a threat to your physical well-being or the physical well-being of another person. Without a doubt, MS meets these criteria. It has a major impact on a person’s body and life. Further, because it’s unexpected, both in being diagnosed and in how it progresses, you may initially experience a sense of helplessness and hopelessness. Given this, being diagnosed with MS may place you at risk for the development of PTSD.”

Looking back on the past 14+ years, my hospital-acquired superbug would have been a prime candidate for triggering a larger PTSD episode. However, while the pendulum didn’t really know which way to swing, I could not talk about the experience for some time because being so violently ill felt so intimate and something I had to deal with on my own. Once I did, it felt good being able to speak about something I was too young to experience.

But, going back to the received text about my next dental appointment, I was afraid. Afraid of that heavy hand resting on my face and it sending more shock waves through my face. And so fearful I couldn’t sleep or stop feeling on edge for quite some time.

Full circle

Having the benefit of having studied Counselling and CBT, I could pinpoint the nature of my fear fast enough: the pinched V3 nerve in my lower cheek and chin being permanently added to my chronic pain in my V1 and V2 nerves. The area just above, in and under my eye and ear have enough to deal with already. Sure, I’ve conditioned myself to remain reasonably quiet and motionless during piercing attacks, but it’s not a foolproof way of handling pain.

I missed the following appointment with my dentist and went through weeks of anxiety about possible new attacks. Last week I received another reminder via text message, but to this day avoidance behaviour is keeping me from check-ups.

To add insult to injury, I failed in my quest for MS often being mind over matter, of being in charge of my strength. It was back to the drawing board and find that inner strength to move forward in life.

In the end, the only thing that keeps me from going downhill is finding positives no matter how negative a situation, symptom or life is.

That positive?

Almost knocking out myself and my dentist without meaning to, without that doomed rubber hammer.


More on chronic illnesses and PTSD

  1. PTSD and Chronic Illness: More connected than we may think
  2. Multiple Sclerosis and the Risk for PTSD
  3. Prevalence and significant determinants of post-traumatic stress disorder in a large sample of patients with multiple sclerosis
  4. Treating Post-traumatic Stress Disorder in Patients with Multiple Sclerosis: A Randomized Controlled Trial Comparing the Efficacy of Eye Movement Desensitization and Reprocessing and Relaxation Therapy
  5. An Overview of Post-Traumatic Stress Disorder (PTSD)

More on trigeminal neuralgia

  1. TN triggers, symptoms and diagnosis
  2. Trigeminal Neuralgia Association UK
  3. Facial Pain Association
  4. Trigeminal Neuralgia Fact Sheet, National Institute of Neurological Disorders and Stroke
  5. Trigeminal neuralgia (Wikipedia)

Winner Best Blog Post 2018 Ireland Blog Awards2018 Winner Best Blog Post with ‘3443 Needles’, Blog Awards Ireland, Ashville Media Group, Dublin, Ireland

◾ MyTherapyApp: Multiple Sclerosis Blogs: 10 of the Best in 2019
◾ Ireland Blog Awards: Finalist 2014, 2015, 2017
◾ MyTherapyApp: Best MS Blog for Simplicity 2018
◾ Everyday Health: Top 10 MS Blog of 2018
◾ Feedspot: Top 50 MS Blog 2017, 2018, 2019

© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2019. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and with appropriate and specific direction to the original content.




3 thoughts on “MS and PTSD: not all in your head

  1. My heart goes out to you, and I’m in awe of your endurance and perseverance. This was very enlightening. I’m hoping that I can share this with my Mama, since she battles MS as well. May God comfort and soothe you, and may he give you the needed strength to cope.

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