old fashioned typewriter with my migraine story on the paper
Migraine,  My Migraine Story,  Vestibular Migraine

My Migraine Story: Finding Relief From Chronic Vestibular Migraine

By Elice Johnson

When did you realize you had migraine? 

I first realized I had migraine in 2014. 

How long did it take to get an official diagnosis? What type of migraine do you have?

In 2014, I started having periods of dizziness and an awful headache that would not go away. The headache lingered for about 3 months. Everyday I would wake up feeling well, but as the day went on, the symptoms slowly crept in during the work day. I saw my PCP and had lots of tests run (bloodwork, stress tests, EKG…) everything was “normal” except for low iron levels. I was told to keep a food diary, try Maxalt, and return in one month. I kept detailed records, took 6/8 Maxalt pills which provided no relief. Went for follow-up and he flipped through the journal, not reading anything… switched me to Imitrex and sent me on my way. Discouraged, angry, and confused; I suffered in silence.

I ended up going the holistic route–diet changes and whole food supplements. I cut out fruit and my headache broke for the first time in 3 months! I was cured…for almost 5 years. April 2019, the symptoms slowly crept back in over the next 11 months. March 2020 I saw an ENT for vertigo; she sent me for a MRI and referred me for Vestibular Rehabilitation Therapy. I spent 1 hour with the PT and for the first time, ever, I finally felt like I was heard! The first doctor to validate every single symptom I described, and by the end of the hour tell me “I think you’re experiencing vestibular migraines.” I went for a neurology consult and she confirmed that I have Migraine with Aura and Migrainous Vertigo.  

Explain your most common symptoms and how they affect your life.

My most common symptoms are dizziness, nausea, and eye pain. This causes me to limit all physical activity, and an increase in anxiety because I never know when an attack may present itself. 

Have you ever experienced rebound from taking too many acute medications to treat your migraine attacks? Did your doctors warn you about this possibility before it happened?

I stopped taking medications in June 2019, because nothing was helping. I am now aware of rebound and am very selective in the type of medication I take and how often I take it. 

What has migraine taken from you?

Migraine has taken away my excitement for physical activity. Attending my favorite High Intensity workout was one of the best stress relievers for me; modifying all of my exercise is a constant reminder of migraine. It has also taken away some of my favorite foods (i.e. grapes, bananas, pizza, and cheese) 

What therapies (alternative and medical) have you used to manage your migraine disease?

I didn’t realize when I started these alternative therapies as part of my “self-care” routine; they have been helping with migraine frequency and intensity: Acupuncture, Chiropractor, Massage Therapy. I have recently started a low dose of Amytriptyline, Magnesium, and Ginger daily. For emergencies, I have been given Naproxen and Zofran. 

What has been the most effective tool you have used to manage your migraine?

I have only been actively treating my migraine for about 3 weeks, so I don’t have much to compare to. I can say that adapting my diet to follow the Heal your headache (HYH) diet has been extremely helpful in cutting the frequency of migraine days. 

What is something you wish you knew before your migraine turned chronic? What would you tell someone else?

I wish I knew that there are ways to gain control of the symptoms to help me feel better on a daily basis. I would tell someone else that there may not be a cure for migraine, but there are tools available to help life be more enjoyable. I would also encourage them to connect with a support network, like Migraine Strong, to help navigate a new diagnosis as it can be overwhelming.   

What have you learned or gained from migraine?

I have learned that mindset and perspective make a big difference in my feelings towards migraine. I believe that one day I will not have chronic migraines, and I am actively working to learn what works and what doesn’t work for me as an individual. It’s an individual experience…trial and error…there is relief on the horizon. 

How far along on your migraine journey are you and how are you today?

I am just in the beginning. I was officially diagnosed by a neurologist on 5/1/20.I started working with the PT at the end of March, and had time to do research about migraine and vestibular migraine. I have started the Heal Your Headache diet, medication, supplements, and VRT. I still have daily symptoms, but the intensity has lessened. I have longer hours of “normal” each day. 

How has migraine affected your family and/or relationships with friends (or even new romantic relationships)? 

It hasn’t really affected my relationships. It’s something I don’t talk about much, because they don’t understand what I am experiencing. They all do their best to be supportive, but it makes it difficult when I am not sure what to ask of them, when I am struggling with migraine. [Our letter to friends and family members can help with some of these conversations.]

What have been your biggest challenges while living with migraine?

My biggest challenges while living with migraine are not blaming myself for “causing” this illness and communicating what I need to feel supported. 

Is there anything you would have done differently with regard to your migraine diagnosis?  

The only thing I would have done differently was seek treatment/diagnosis sooner. 

Which treatments outlined in the Migraine Strong Treatment Pie are most effective for you?

Movement, Hydration, Therapy, and Diet

Can you share any positive experiences that happened in your life as a result of having migraine?

I have found a community of random people who are SO supportive, encouraging, and informative. 

What has been the worst aspect of migraine?

No more coffee… and just a daily feeling of dread as I prepare for the next attack. 

During your darkest times, what gave you hope?  How did you get yourself out of despair?

I remind myself that what I am feeling will not last forever. I have found relief before, and I will find relief again! 

How has social media helped you?  Are there times that you have taken breaks from social media?

Social Media has helped me by connecting through the Migraine Strong Facebook group. I did take a break when I felt overwhelmed by the amount of information and found myself comparing experiences. I frequently remind myself that everything is a resource, and potential tool to add to my kit; each journey is unique. I have found people’s blogs to be encouraging that it is possible to live a full life with migraine on the back burner. 

What’s next for you in terms of treatments, lifestyle or changes in your healthcare team.

I will continue to explore the Heal Your Headache diet, allow for my medication to settle in, continue VRT, and actively work on filling in the pieces to my own treatment pie

Elice Johnson lives in Hatfield, Pennsylvania. She works for an agency that serves adults with Intellectual/Developmental Disabilities and Autism. She spends a lot of time volunteering with Special Olympics and Ainsley’s Angels of America. In her free time she enjoys hanging out with family, spending time in nature, or just lounging on the couch. You can follow her on Facebook.

My Migraine Story: Finding Relief From Chronic Vestibular Migraine

2 Comments

  • Elise Presser

    Hi! you mentioned that you had low iron but I didn’t see any mention of treatment for that? I just discovered that my ferritin level was somewhat low (32) and while in the ‘normal’ range, my doctor said that can cause fatigue and low oxygenation to my brain. He would like to see the level somewhere between 70 to 100 – still in the ‘normal’ range. I’m in menopause, so I was surprised to hear I need iron! I’ve only been taking it for a week, and I am feeling much more energy. And no migraines for the last week…have to wait and see if it makes a big difference, but I’m overdue for my regular weekly headache so let’s pray this solved the problem. Even if it doesn’t, I’m feeling much better. I guess it takes quite a while of regular supplementing to see results, and I’m going to keep testing my levels to make sure I don’t get too much.

    • Migraine Strong

      Hi Elise, I hope your iron supplements bring you some relief. Definitely have fingers crossed for you!
      Best,
      Jenn (for Alicia)

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