Those who suffer from vestibular migraine disorder, or another migraine variant, or any chronic illness – knows how joyful a “clear day” is. When the amount of lucid days increases, it’s easier to spot the triggers and symptoms when they do arise. Although it’s a treat to have symptom free days – or close to symptom free days – the fear that it will be short-lived is real, vivid and distracting. I completely understand your distress. This is called anticipatory anxiety.
Today’s guest post is from Kristi Ann DeName, a NYS licensed mental health counselor who is certified in biofeedback therapy and level-II trained in Eye-Movement and Desensitization Reprocessing (EMDR) therapy. She provides counseling for children, adolescents and adults, primarily focusing on trauma, stress-related issues, ADHD and anxiety. Kristi is extra special because she does all of this while managing her own vestibular migraine disorder. She even provides therapy to other VM sufferers via online chats.
When Good Days Lead to Hopeless Bad Days
After I received an official diagnosis of vestibular migraine disorder fall 2018 (after various neurological tests, cardiology tests and ENT tests from 2017 into 2018), I was able to finally begin the road of proper symptom management. The longer I go with fewer symptoms, the fear begins to quiet. The longest period I have gone with minimal daily symptoms in between migraine attacks was two months. After another intense episode flares and finds me, that’s when defeat, anxiety, frustration and sorrow swoops in again.
Slight guilt stirs in me as I scan my last few weeks to see what triggers I could have avoided; I find I begin to blame myself for a disorder, as if I have full control to make it vanish as quickly as it came. And that is the trickiest part—some days, it does feel as if I have it completely under control, as if it has disappeared.
So, when symptoms return at a constant again; when light is suddenly brighter and blinding, noises are louder, the world is bombarding my senses; when I feel as if I’ve free fallen in my seat, or lose my balance; when I feel as if gravity is squishing me down like a pancake, and my vision lags when I turn my head; when the muscles of my neck and shoulders are as rigid and tight as rocks as they work on overdrive to keep my wobbly, swollen “bowling ball” head from losing its spatial orientation; that is when I begin to feel hopeless and helpless again. I know you can relate, and that it is difficult to not feel discouraging defeat.
The Importance of Self-Validation and Acknowledgement
What does help bring me back to empowerment and gratitude: self-validation and acknowledgment of how I am feeling are both so important during a flare-up, along with patience, gentleness and lots of rest to let my brain –which tries so hard to maintain a sense of normalcy for me –gain a recharge and a chance to be still from any sensory input. Sometimes I have no choice in the matter, and my brain sends itself off into a coma-like sleep for almost an entire 24 hours. I also write down or think about what I am appreciative of—that I can still see, hear, touch, smell and taste. That I am still alive and can push through most days even when I am riddled with symptoms.
Remember: energy fluctuates but will-power is an endless supply. I am learning how to prioritize which events and experiences are worth dipping into that abundant will-power, and which are OK to reschedule or say no to.
A Community or Friend Can Help You Cope with Anticipatory Anxiety
What also helps the anticipatory anxiety is reaching out to others in the community for comfort (like Alicia, The Dizzy Cook!), for guidance, support and encouragement, and for a reminder I am certainly not alone in this.
Please remember that: you are not alone. You are not helpless. You have a chronic disorder and you are managing it in a fast-paced, sensory inundating world. You’re an actual warrior, yeah!
A chronic illness is a hard idea to swallow, let alone one that combines a balance disorder and a neurological migraine disorder, especially when a lot of it is invisible to others. It has even been called a brain disease by neurologists, which sounds scary and is upsetting. But reminding myself of these labels actually helps me put things in perspective when I lose patience, because there is NO easy or quick fix or way out of this. Life is different now.
You Are Amazing
You are doing your best every day, and your best will change every day. Do not berate yourself if your best is a bit lower at times. Prep in advance for difficult periods of flare-ups. Make a “took-kit,” for physical and mental self-care and symptom management. This can help ease the anxiety of wondering when the next flare-up is when you are in “little-to-no daily symptoms zone”.
As time has gone on, I have learned that the following methods work for my “tool-kit” (disclosure: this may seem like a lot, but honestly every single one is worth it because we have a ton of non-specific systemic symptoms):
My Mental Self-Care Toolkit
- Migraine Buddy app for recording attacks and symptoms, and WeatherX for alerts about air pressure changes.
- Quotes for lifting you back up and reminders you can get through.
- Join a forum – Facebook has VM ones as well as Migraine Strong, and others for any chronic illness.
- Educate family and friends about how they can support you, and then lean on them when you need it. Even if it is just for a hug while you cry.
- I have recently started using transcendental meditation and find it very effective overall for me mentally and spiritually. Yoga, mindfulness meditation, and prayer can fall under this category.
- Fidget cubes, sensory squishies, or Zen sand trays for stress reduction.
- Biofeedback for relaxation skills.
- A magnesium/Epsom salt bath with essential oils (like lavender and peppermint).
- CBT skills of reframing, thought challenging and thought restructuring. The Feeling Good Handbook is recommended by Dr. Teixido.
- DBT skills of self-soothing, mindfulness and distress tolerance.
- Let yourself cry and temporarily fall apart as needed.
- Do not schedule too many events in a row
- A mental health therapist you connect with, obviously! 🙂
Accept and Surrender
I hope this helps you in your journey of symptom management. We do have to work harder. And we do have to accept and surrender to a disorder and dysfunction of our system. There’s nothing wrong with that – its just annoying, to put it simply. It’s inconvenient and yes, it can lower our quality of life. It’s the new norm.
So, let’s work with it. Let’s fight back. Let’s prep for it. And let’s accommodate it and all the emotions that come along with it. At the end of the day, life is still beautiful at the same time and we deserve to enjoy it despite the wavering or constant discomfort. – Kristi Ann DeName
For another great post by Kristi, see Cognitive Behavorial Therapy for Chronic Migraine.
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