Photo credit: Ann Zuccardy, 2014, Hong Kong.
Experiencing vertigo without a headache has been disorienting, demoralizing, and frustrating in the months since I last posted. Vestibular migraines can cause dizziness and balance issues, and surprise, surprise...you can have one without the classic debilitating migraine headache. Thankfully, I only get migraines with headaches once or twice a month. I know when a classic migraine is coming because my eyes get watery, and I yawn every 30 seconds. I am grateful for these cues (aura) because I can take Imitrex (orally or nasal spray) and often nip it in the bud. The medication makes me sleepy and dopey, but that is preferable to the recreation of the classic pea soup/vomit scene in The Exorcist. Yeah, I'm being funny, but truly it feels like I am possessed and want to die when I get a migraine and don't get my medicine on board fast enough! It ain't pretty.
Because of my migraine experiences, I was quick to self-diagnose my constant vertigo, which incidentally cost me my job as a technical writer for the Army after 12 weeks of short-term disability, as being because of SSCD. I was ready to beg my doctor to do a craniotomy to plug up the holes in my head. That's how desperate I had become. I was willing to have holes drilled in my head to plug up the holes in my head (I love that irony, don't you?)
I do believe many doctors would operate, given how disabled I've been feeling, but I am grateful to be under the care of Dr. John Carey's team at Johns Hopkins, where SSCD was identified less than three decades ago. These people are, by far, the best in the world for diagnosing, treating, and pioneering new treatments for SSCD.
When I visited Johns Hopkins about two months ago, my doctor asked me about the nature of my dizziness. "Do you have it all the time or just when you are holding your breath like if you are bearing down when you go to the bathroom?" (I learned that this type of breath-holding is called the Valsalva maneuver). The Valsalva maneuver can be used to slow a racing heart or to help with some physical exercises, but many people also do it when they are defecating. It is very common for SSCD patients to get dizzy when they hold their breath in this way. Still, constant dizziness during regular daily activities is not an SSCD symptom - it's usually a symptom of something else that may or may not be related to SSCD.
Since we have ruled out other types of inner ear anomalies in my case, my neurotogist believed the constant dizziness was a symptom of my vestibular migraines. He suggested I follow a migraine diet and add a low dose of nortriptyline, an old-school anti-depressant often used in low doses to control migraines. At first, I was pissed. I thought he didn't believe me. How could I possibly have a migraine without a headache?
While my initial reaction was defensive, the more I read, the more I appreciated this conservative approach. Try the diet. Try the meds before drilling into my skull. Do the least invasive things first to see what happens. Seemed like a good approach. I am not eager for brain surgery and a loooooong, bumpy recovery.
I'm not gonna lie. The migraine diet sucks. No chocolate, aged cheese, beer, limited caffeine, no alcohol. However, after working with it for two months, I have been able to reintroduce some foods because I know what triggers me. My triggers are alcohol (particularly red wine and beer) and chocolate (my favorite food in the world). Many legumes are on the migraine diet, but they don't bother me. Sometimes it's hard to figure out triggers and they are different for everyone. Drinking alcohol or eating chocolate doesn't always trigger me, but if my body is a perfect storm (stressed, tired, not eating, and exercising), then I will be easily triggered by a cocktail or a candy bar. I have learned to assess each situation and make a determination if it's worth risking eating the food or having the drink. I have also started on nortriptyline (20 mg./day at bedtime), but with any medication there can be side effects.
I fainted in my kitchen about a week ago and I wasn't sure if I should blame it on the medication. I have very low blood pressure and this drug can make it even lower. Falling is perhaps my biggest fear and I hit the floor pretty hard when I passed out. It added to my already high anxiety about falling and hurting myself. Luckily, I was unhurt. Was it the drug? Or simply my low blood pressure? This is not the first time I've fainted - it has happened long before I started this medication. I always attributed it to getting up too quickly from a resting position. Who knows?
One of the things I used to profess when I taught childbirth classes is that once you introduce an intervention, you invite other interventions. For example, let's say you have an epidural, but then you can't feel contractions, so you end up in a C-section because you cannot push effectively. If you hadn't had the first intervention, you may have avoided the C-section. This is overly simplistic, but you get the gist. (My daughter was born at home and I tend to be a bit more laissez faire when it comes to interventions than the traditional American obstetric model).
Every birth is different and so is every case of SSCD. The key to making good decisions about intervention is to ask oneself, "What is the risk of doing nothing at all vs. the risk of the proposed intervention?" With this question in mind, I decided to try the drug and diet instead of rushing to surgery because the drug and diet intervention is far less risky than brain surgery. But then I faint - is this because of the drug or just a coincidence because of my wonky blood pressure?
I don't know.
What I can tell you is that the migraine diet is a good option to try if you, too, have constant vertigo with your SSCD. It's a low risk intervention and you might feel better. I certainly do (vertigo not completely gone, but much better.) Follow this link to Dr. John Carey's paper, Migraine - More than a Headache. It has instructions for incorporating the migraine diet into your life. Can't hurt to try.
My point here is that each of us with SSCD needs to carefully weigh the pros and cons of any proposed solution before pursuing it. What I do may not be right for another SSCD patient, and vice versa.
When I taught childbirth classes, I realized that most people spend more time researching a new car purchase than health care options. Many people (thinking of my parents' generation) were raised to believe you trust and respect the doctor and do whatever they suggest. My philosophy uses a bit more research (trusted medical sources only - not random crap I find online) and takes a bit more time because it always raises more questions.
But hey, I am a curious gal. Questions are my friends.
If you are advocating for yourself or someone else with a medical issue, questions and research from multiple sources are your friends too. If you have been definitively diagnosed with SSCD, don't race into the surgery. It's brain surgery, for goodness sakes! Ask questions from multiple sources.
You will thank yourself.
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