Until you've experienced it, you have no idea. Vertigo may be just a movie title to you or your worst nightmare. It's unlike being dizzy yet it is often synonymous with that word. When I first started experiencing vertigo around the age of 15 it was the most frightening experience of my life and I had already been through plenty of surgeries and undiagnosed health scares before. This time, I actually thought I might die. Vertigo isn't generally something that happens to teenagers; especially weeks on end.
I honestly can't pinpoint the exact day or even month when it started and I'm pretty sure I've tried to black out the entire experience for self-preservation. I do remember the overall picture: it felt like I was on a swing, like when I was a child, and I spun around and around until the swing chains were twisted like a rope. Then, when I let go, I spun around and around again. When the swing stopped spinning, my head could not stop and continued to spin for a few moments until I gained my balance. This was a very similar feeling except I wasn't on a swing and the spinning was much broader, like one of those boat rides where the boat swings to an almost vertical height and then back down to the other side where it reaches that vertical peak again. It's very different from feeling a lack of balance or feeling lightheaded. Vertigo is a rocking or spinning that doesn't ever stop and almost feels worse the less you move around. It is unbearable when lying down or closing your eyes but there is nothing else you can do because sitting or standing up feels like you are going to die. The intensity of the vertigo knocked me out for several days and then gradually got better over the course of two weeks, sometimes lasting for a month with, what I call, low-grade vertigo. It's like I can never fully gain my balance or even my vision. I can see perfectly fine yet it feels like I can't focus on anything. The nausea that accompanies vertigo can also take weeks to dissipate.
At the time, I had horrific headaches after the most intense days of vertigo. I also had increased tinnitus (ringing in my left ear) and felt like my head was full of water (i.e. my ears were clogged up). I went through a barrage of tests ranging from being turned upside down and quickly turned right-side up (let me tell you, that is not fun when you already have vertigo), balloons filling up with air in my ears, water swirling in my ears, lights moving back and forth that you need to follow with your eyes, hearing tests and much more. My hearing had suddenly deteriorated and by the time I was a senior in high school I was given a hearing aid for my left ear. My hearing is now so bad that it's severe on the left and moderate on my right. Hearing aids make me anxious so I've learned how to adapt and always use closed captioning whenever possible.
During the intense parts of the vertigo sessions my eyes would dart back-and-forth from side-to-side, very quickly, due to nystagmus. This is a key symptom for vertigo (versus dizziness) and my doctors saw it several times during the first few years I dealt with vertigo. I haven't had it in years.
Long story short, I ended up being diagnosed with Meniere's Disease in high school. It is a hereditary condition (both sides of my family have it) and causes degenerative hearing, tinnitus, vertigo and fullness in the ears. It is typically on one side but I was diagnosed with having it on both sides with it being worse in the left ear. At the time they still didn't know as much about Meniere's Disease as they do now and it was a surreal experience having just been diagnosed with fibromyalgia not many years before, another condition with very little information known at the time.
I began taking diuretics in college, although I may have started in high school and gone back on in college, which is a really weird feeling for a teenager because diuretics make you have to urinate often and is not something someone under typical child-bearing years is used to experiencing. There weren't a lot of treatments but I tried whatever they recommended. When I did get vertigo I would take meclizine (aka Dramamine) or valium but it always knocked me out.
This continued throughout college and got worse when I moved to Los Angeles from the east coast. I lived in Los Feliz and worked in Beverly Hills, only 12 miles away (max) and it took 45 minutes to get there. The stop-and-start traffic made me extremely motion sick and produced a low-grade vertigo that I lived with much of the time I lived in LA. I went to the country's top meniere's doctors. Some said it was caused by allergies, others by hormones. I found out about 12 years after starting birth control pills that it can greatly worsen Meniere's symptoms. When I got off I did notice a big decrease in Meniere's flare ups. After a while I was so fed up with doctors because they weren't helping. I had tried their preventative medicines, a low-sodium diet, and avoided vertigo-inducing activities. Finally I ended up seeing a neurologist for the migraines I had and he suggested I might have basilar migraines that originate in the back of the head and can cause visual disturbances and vertigo. Since that first diagnosis I have been diagnosed by many more doctors with both basilar migraines and Meniere's disease. The last ENT I had suggested I probably have both. She was the most helpful because she prescribed me a medicine used in over 70 countries around the world for Meniere's but was not FDA approved in the US to be manufactured so it has to be ordered from a compound pharmacy where they make it themselves. The medicine is called betahistine (or histamine) and it is said it "may reduce the asymmetric functioning of the sensory vestibular organs in addition to increasing vestibulocochlear blood flow by antagonising local H93 heterorecptors." (source: NIH) . The medicine helped a lot but I had to take it 3 times a day and if I missed one, I got dizzy. I eventually got off of them and ended up feeling better after a while.
Until this week it has been a year or two since I last had vertigo due to a drastic lifestyle change (more in another post) that made my migraines and vertigo disappear. This time it lasted about a week and I realized it was spurred by hormones, fibromyalgia (specifically myfacial syndrome in my neck) and barometric pressure from the rain storms. It started off as a headache and eventually turned into vertigo, nausea, blurry vision and worsening head pain. My tinnitus and hearing also got worse. It felt as if I literally had both Meniere's and a migraine at the same time! For years when my vertigo was more active, it was always ten times worse from January through April, during the rainier seasons; especially in California.
This time I didn't focus on the diagnosis but instead on the potential cause and what I could do to fix it. I didn't miss any work, in fact, I ended up working double-time but I did focus on relieving the pain in the back of my head and neck. I tried using my FIBROAWAY cream and it helped tremendously. Usually those creams don't do anything but this time it seemed to help. I used my neck massager and a heating pad as well and didn't exert myself at all. Since having vertigo after so long without it was scary and disheartening, I decided to get a referral to a physical therapist. I start weekly appointments in 2 or 3 weeks and I cannot wait. Once you are healthy for a while, it feels like having pain again isn't an option. I will not roll over and accept vertigo or pain. So now I'm getting my fighting gear on and I will not go down easily.
One thing I've learned about myself over the years, and this past week was no different, I don't do well when I'm knocked down. I'm independent and I don't let pain slow me down in any way. I think it's for this reason that I go straight to self-pity when I have vertigo and/or migraines. It feels as if there is no hope and I will never feel better. This is partly to do with the fact that it has always lasted several days if not weeks. I am grateful it was only a week this time.
I'm always embarrassed when I'm better and realize that a pity party was not necessary and there was no reason to feel like my world was ending.
If you are unfortunate enough to experience chronic illness or chronic pain, I have been there and I understand. It feels like it will never get better, especially if the doctors are out of ideas and you feel like you've tried everything. Fortunately, there are always things you haven't tried. If your body is falling apart, it's probably trying to send you a message. Something is wrong physically, emotionally or spiritually.
Honestly, if you've read this far you must have suffered from vertigo or migraines before. People generally aren't interested in other's health problems otherwise. So, I promise you, I'll get to my big "cure" soon. When I do, I'll add a link to this post so you can find it. There is always hope. In the meantime, we need to allow ourselves to feel all the emotions associated with these conditions: shame, fear, disappointment, loss, grief/sadness and more. It is not our fault we have these conditions and it is okay to feel whatever you are feeling. Just try not to dwell on it. Feel it, process it and let it go. I wish I had known how to do that all of these years I suffered from chronic illness and chronic pain. I will no longer apologize for making changes to my life to live a happier and healthier one and times I have to do things differently than others because of my health conditions. I will no longer resent feeling different. Without these ailments I wouldn't be the perseverant person I am today.
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Note: I know there are many people out there suffering from similar conditions and explore this more on my blog as I have learned a lot about treatments, what's worked for me and what I still have left to explore.
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