Have you ever felt that the room is spinning? You know, that sensation we desired to feel when we were kids. That by turning in circles 100 times and flopping on the floor, a gut-tickling dizziness would be awaiting your fate.
Or maybe you know what it feels like to take one step after the other, but feel like you might walk into the wall. You’re probably thinking, “Yeah, after a few glasses of wine.”
Well, the sensation we can so easily create for ourselves has become my reality. A constant sensation of a spinning room, wobbly legs, unstable movements, aches and pains, numbness and tingling and a feeling where I might just pass out. It’s a level of dizziness that at times, prevents me from driving my car and has made it so I can’t hit the gym without feeling like I’m going to vomit. The only problem is I’m not drunk, and I didn’t just get off the swings at the fair.
I’m also slowly morphing into a vampire. My body is rejecting bright white lights and sound to the point where all I want to do is curl into a ball in a closet. Walmart at 1 P.M. on a Saturday has become a death sentence. Warehouse lights, never-ending aisles, and screaming kids all begin to cluster together like spinning stars above my head similar to a cartoon character that was hit in the head.
If I can’t be found, search the nearest dark room. It’s normal for me to have meetings at work in the dark or to find me hiding out in my cave of an apartment.
Hey, did I mention I hate bright lights?
An October Night I’ll Never Forget
All of this began in October 2016. A night at home watching a scary movie with my husband, turned into a horror well beyond the two-hour rental. What felt like a panic attack would soon reveal itself as a condition called Vestibular Migraines. A sensation came over me where I felt as if I was sinking into my couch as the room started to spin. My heart began to race, my face became numb, and I lost all control of my balance. Like any sane person, I thought I was having a stroke or a heart attack until I used my rationale to realize I’m a healthy 27-year-old, it had to be something else.
A few weeks went by where I felt as if I had been drinking wine to the point where I couldn’t drive. I was helpless. After months of appointments with several different doctors, I was led to believe I had a Sinus Infection, Benign Paroxysmal Positional Vertigo, Multiple Sclerosis (yeah, that happened three times) and Superior Semicircular Canal Dehiscence (SSCD). I underwent two CT scans, an MRI, and a full-fledged ear examination – hearing test, vision test, sound check, the works. When those tests came back negative for anything cancerous, my ENT introduced me to a condition they believed I had called Vestibular Migraines.
Vestibular Migraines only affects a very small portion of the population and is newer in the medical community; it’s also a type of migraine that can attack without a headache. So instead of being bogged down with pain, I experience constant dizziness, blurry vision, auras, and what I call “dirty vision,” which is referred to as floaters.
While it was a relief to put a name to my dizzy spells finally, it was a struggle for me to understand how you treat a “migraine” that’s not an actual headache. No – Advil, Excedrin, Triptans and pain meds don’t work.
Instead, there are a copious amount of pill cocktails prescribed to help rewire your brain chemistry and potentially stop the migraines from occurring. I was open to trying anything to make the dizziness sensation disappear and started with the first medication – Amitriptyline.
Amitriptyline became my worst enemy. I, of course, was part of the low percentage who had a terrible reaction to the drug. Can you say anxiety? The drug made me more anxious than I was previously, I lost clumps of my hair at a time, and it increased the sensitivity to my already ultra-sensitive light problem, and completely altered my emotions. This plan wasn’t going to work.
The next preventative to try was a Beta Blocker called, Atenolol. Now this drug I hear does wonders for people who experience all type of migraines. The only problem, I have asthma. Yeah, apparently this drug can cause problems with asthmatics, and once again I had a severe reaction. After a few weeks of feeling like I was breathing through a straw, I realized I needed to stop taking the drug and find a new solution.
Sink or Swim
So now what?
When you’re going through something that impacts your quality of life, it’s easy to give up hope. It’s easy to think you’re going to be stuck like this forever. I know, dramatic, right? I have a type of migraine. It’s not cancer or ALS, I’m not paralyzed, and I’m still able to be around the ones I love. The problem is that chronic migraines are so mind-debilitating it seems like nothing can ameliorate your circumstance. Not to mention, you feel like a prisoner in your spinning body, and no one can hear you screaming.
It also doesn’t help that I don’t have a visible injury. If my leg were to be broken, it would be a constant reminder to my friends and family that something is wrong and I’m not well. However, with migraines, it’s easy for people just to think it’s all in your head, but wait, it is, literally.
While I’ve exhausted my social circle reminding them that I am on a mental merry-go-round, it’s still easy for people to forget how you’re feeling and realize this isn’t a made up reality. I couldn’t even imagine how exhausting and time-consuming it would even be to keep up a “woe is me” charade. All I wanted was to feel like Kayla again.
After having this condition for a few months, I was terrified to tinker with any new drugs. And after my experience with Amitriptyline and Atenolol, I realized that something with my body needed to be regulated, but I was feeling pessimistic about my medication options.
But I’m a fighter and wasn’t going to give up.
A Beacon Of Hope
My first step to getting my life back on track was when my husband bought me “light blocking glasses” that filter blue light. (Shout out to my husband, Marc, by the way. He’s been the most supportive person through this whole process.)
The glasses have made it so I can go to the grocery store, sit in my company meetings, work on my computer and function similarly as I did before. Sure I look a little nerdy, but these glasses have vastly improved my quality of life, especially at work.
The next life-changing move I made came from a book I found called, “Heal Your Headache: The 1-2-3 Program for Taking Charge of Your Pain,” by David Buchholz.
This book has a plan. An actual plan for migraine sufferers like myself, and I do well with plans. It not only explains why our brains undergo migraines but how you can help prevent them.
You see, we all have a threshold of how many migraine triggers we can handle before having an attack. Some of us have low thresholds and others high. All it takes is for our migraine triggers to hit our threshold or to soar above for us to have horrible headaches, or in my case, dizziness.
Each step in the book helps build your threshold by incorporating things like exercise and yoga into your routine, and teaches you how to eliminate your triggers by avoiding certain foods, medications, etc.
After reading this book, I completely changed my diet. I removed Caffeine, chocolate, foods with MSG (which apparently is everything out there), bread, aged cheeses and meats, avocado, bananas, onions, nuts, beans, figs, raisins, and most alcohol. Yes, most alcohol. I found that organic white wines don’t have the sulfites that bother me, so I still indulge in wine from time to time.
Heal Your Headache helped in the diet triggers department, but it also advised me to get off birth control. And to this day, I am convinced it was the culprit to my problems.
After getting off of the Nuva Ring, my symptoms were cut by about half. And if you know anything about migraines, women are more likely to have them than men, which I believe is attributed to hormones. Since I stopped taking birth control, I only suffer one week out of the month from extreme light sensitivity, rather than a whole month of hiding in the dark.
Moving Forward
Last Fall I was hopeless, depressed and felt trapped inside my body. “What did I do to deserve this?” “I treated my body so well, why me?”
That type of thinking had to stop. The moment I decided that I wouldn’t let this condition control me was when I began to find peace. I quickly shifted my energy from feeling sorry for myself to figuring out how to be proactive with my “new normal.” Changing my focus from “why me” to “what can I learn” became a game changer. I learned to be more patient with others and their problems, to be grateful for the good days, to feel appreciative of the life I have, and how I could take this experience and become a better person.
In March 2017, I finally saw a Vestibular Neurologist. He completed a series of dizziness tests and officially confirmed that I indeed have Vestibular Migraines, and am one of his youngest patients. I also learned that I had Vestibular Neuritis in November and because of stress from work, the condition lasted about 4 months rather than a few weeks like most patients. That said, my Vestibular Nerve was damaged and it’s unlikely it will ever fully heal, which causes my dizziness. Although I will have to deal with this for the rest of my life, it can be treated by reducing stress, anxiety combined with taking an assortment of vitamins and a few Kayla-friendly drugs. [Read more how I manage my migraines by clicking here.]
This is my journey, and while I have my bad days, the good outweighs the bad. If you’ve just been diagnosed with this condition, I know it’s easy to lose hope, but your attitude is everything. Keep on fighting and continue to try new treatment methods, whether that is altering your diet, medications, massage therapy, yoga, acupuncture, Botox or even counseling to deal with your stress and anxiety.
It’s a battle, but a battle you can win.
Lane
March 22, 2018this is awesome! love you so much and thank you for being honest and speaking out!! 😘 l
Delia
June 18, 2018I too, have vestibular migraines. What medicine seems to help you and take away the dizziness? Thank you!
Delia
Delia.kiehn@yahoo.com
Kayla McCain
June 18, 2018Hi, Delia, I’m sorry you have to suffer from VM, too. 🙁 In regards to my management, check out this post: https://www.truekaylaisms.com/8-ways-i-manage-my-vestibular-migraines/. I also recently saw my doctor and he is going to have me try https://www.cefaly.us/en/migraine-treatment-cefaly.
Amy Wolford
January 16, 2020Interesting! How’s Cefaly working? I also have VM.
Devony Fabian
August 1, 2018Hi Kayla! Who is the Vestibular Neurologist that diagnosed you?
Kayla McCain
August 1, 2018Hi, Devony,
Dr. Beh. He’s a neurologist at UTSW in Dallas, TX. He has been a life changer for me, and so many others that have gone and seen him. 🙂
andy
December 6, 2018I was wondering how the Cefaly worked for you and what medications do seem to help. I’m a bit medication adverse as all my issues started after having an adverse reaction to Cipro seven years ago, but I try to stay open minded about the meds.
Shielding Your Eyes From The Light: My Go-To Migraine Glasses – True Kaylaisms
January 5, 2019[…] see, prior to my disorder, I was already super sensitive to light, and when I got diagnosed with vestibular migraines, bright fluorescent lights and computer/tablets made it impossible for me to […]
Jenny Simmons
February 20, 2019Hi there, thank you for your sharing your story. I’m based in the UK and just wanted to ask a few questions. On 1st feb 2019, I woke up with dizziness, constant dizziness that hasn’t gone since or let up for even an hour. I have had several trips to doctors and a&e to have now been given a CT scan and told nothing serious in that respect but my ENT referral via NHS is end of June 2019. I have since been sen by an ENT via a&e as I felt my symptoms were worsening. It’s not BPPV and she thought based on few tests and discussing my symptoms it’s likely to be vestibular migraine or neuritis. You mentioned when you first had your symptoms you were told it was VM but then later on VN? How did they establish your vestibular nerve was damaged? And did you experience any difference in your symptoms between VM and VN? Thanks so much for answering. Jenny
Kayla McCain
February 20, 2019Hi, Jenny,
I’m sorry to hear about that. It’s a scary thing to not know why your body is behaving that way. So my doctors think I had a “perfect storm” with having Vestibular Neuritis initially and then also having Vestibular Migraines. However, because I didn’t find a specialist right away to tell me what was wrong with me, this was their theory. My doctor said that because my dizziness got gradually better without medications from Nov. 2016 to April 2017 it must have been a bad case of neuritis, however, because of my progress and what they saw in my CT scans, they concluded that the neuritis never healed fully, hence the permanent damage. Now it’s not like SO bad where I can’t function, but I have been told to accept that I might be dizzy daily for the rest of my life. However, when I’m not having a VM attack, it’s pretty mild and liveable. But when the VM flares up, it’s AWFUL. The symptoms of VM and VN are pretty much the same, what makes it different is the cause. Hope that makes sense and helps you on your journey!
Suveena
April 2, 2019You just explained my life right now, i got this on feb 2017 and i am still suffering with severe episodes
However thanks for your post, i am working on it.
Liz Douglas
January 24, 2020I’ve suffered with this for two years my GP sent me for physio because my neck was stiff and painful (Due to other issues) When I finally had physical treatment the migraines from that source disappeared but there are many triggers from light sounds particularly buzzing sounds from computers and the Fridge freezer which are so invasive. The security lights beneath my windows buzz but I have no control over them. You mention ‘Floaters’ I don’t get those mine start (Whether they develop painful headaches or not) with what look like moving water in my peripheral vision. If I don’t stop and get into the dark and quiet it develops into either a multi coloured triangles that change position and colour as if they were on speed or black and white triangles doing the same at speed a bit like a Kaleidoscope These both completely block my vision – I also experience some or all of the other symptoms, nausea, vertigo and what feel like panic attacks these are with me several times a day whether the rest of the symptoms develop or not. All I was assured by the Neurologist are typical symptoms – The visual disturbances can last for several hours and in some ways are worse than the pain of the headache because of the nausea, vertigo and anxiety attacks The migraines can last a couple of days but it’s the after effects such as exhaustion continued nausea and dizzy spells often take several days to recover from and sometimes trigger yet another migraine.
I was offered meds for the nausea but the contraindications and side effects looked worse than what I was already going through so I refused. Several years ago I was on Amitriptyline for over two decades to help with M.E but my when my heart consult told me I had the heart of a Heroin addict (I’m not btw) I started to research the meds I was taking and discovered that you’re not supposed to take Amitriptyline for more than 9 months as it causes heart damage. I asked my GP why he’d not warned me he said ‘It didn’t occur to me till you mentioned it’ I also looked at NSAID painkillers which I’d taken for decades and discovered if you take them for more than 3 weeks at a time they actually start causing pain. At that time I was virtually bedridden with pain I went cold turkey I was so ill anyway I didn’t notice the difference but within weeks I could spend time out of bed (They don’t tell you anti-depressants and NSAID’s are addictive)
I still struggle with pain but manage it naturally with anti-inflammatory foods, herbs and spices such as Celery, Camomile and Turmeric and Ginger since most medical conditions have an element of inflammation. I can’t tell if they help the migraines it’s hard to say and have just had the results of an MRI nothing to see there. No doubt I’ll be offered lots of different meds (The last lot all had scary contraindications and can actually cause the condition they’re supposed to treat) the GP won’t check for contraindications or at least they haven’t before. I did ask a chemist to check one of the meds they said they’re fine I checked they would have potentially killed me if I’d taken them. I found a couple of websites that may or may not shed light https://www.everydayhealth.com/news/10-surprising-facts-about-dizziness-vertigo/ and a link in the article to an organisation that deals with Vestibular migraine etc. They may be of help to some of you https://vestibular.org/understanding-vestibular-disorders/types-vestibular-disorders/benign-paroxysmal-positional-vertigo
Nicki
April 5, 2021Oh my goodness, your post exactly describes what I have been battling since 2014! I’m a healthy mother of two, and after my second child was born, what felt like a “panic attack” set me on a very long, frustrating road to diagnosing my vestibular migraines, which drastically impacts my life nearly daily. Thank you for posting your experience; this has helped me reclaim my sanity! I read your whole post saying to myself, “Yes! ME TOO!” I just haven’t found my magic combination that works for me yet. I’m encouraged by your blog, though, it really means a lot to read someone who would “get me”! 🙂
Nicole E Merced
November 4, 2021Thanks for sharing this. I can relate to this so much. I have all the same symptoms. I have seen so many specialists and been scared that I have all these different diseases. It’s so hard to make others understand who don’t see a physical impairment. I still don’t have official diagnosis but vistibular migraine was mentioned recently to me by a physical therapist. I was also on nuvaring!! During one of my vertigo episodes a few months ago I impulsively took it out because I didn’t know what was wrong with me and thought maybe it was causing issues. My hormones were completely out of wack after but are just starting to neutralize. I’m showing some improvement now. Thanks again for sharing your story. It gives me hope.