Vertigo, Redux

I haven’t posted for a while not because I was on a restful summer holiday but because I’ve been experiencing bouts of vertigo and dizziness over the past few weeks. Not only do these sideline me, they also affect my brain.Vertigomovie_restoration

They affect my memory, for starters. As I began to write this post I did a quick Google search and discovered that I wrote the exact column I was thinking of, under exactly the same title (“Deaf and Dizzy”), a year ago. If you want to know more about vertigo, Meniere’s and migraine-associated vertigo (MAV), you should read it. (My diagnosis is MAV.)

Memory loss is just one of the ways vertigo and dizziness mess with your head. During acute attacks, which in my case last for a couple of hours, I have to lie down with my eyes closed. If I open them a crack and see the room still spinning, I shut them again. If I don’t lie down soon enough, I vomit. Even sitting is no remedy. I have to lie prone.

In between acute attacks I’m dizzy. I walk unsteadily and sometime lurch, depending on the intensity of the dizziness. I look like a drunk. It’s not just memory that suffers. The brain seems generally confused. I pour orange juice into my coffee. I try to unlock the front door with my car key. I worry it’s a precursor to dementia but my doctor assures me it’s not.

I can’t detect a trigger for my vertigo, but luckily I recognize the symptoms of onset and can try to get to a safe place before it hits me flat out. For a few hours or even days preceding an attack, the back of my neck aches and the ache gradually spreads upwards. I feel pressure in my left eye. I experience hyperacusis. I may be a little dizzy. I’m tired. But it’s when my eyes swing to the right and the world starts spinning counterclockwise that I know I’m on the edge of vertigo.

Sometimes, the timing is not only inconvenient but dangerous — usually when I’m driving. Before and after a full attack, I can focus on the road ahead and make it to a safe place. Interestingly, focusing on one point is recommended as a way to control vertigo. I couldn’t possibly drive during a full-blown vertigo attack, but experience has shown me that I can get to safety — through what feels like force of will.

Alan Desmond, who writes the blog “Dizziness Depot” on Hearing Health and Technology Matters and is the director of the Vestibular Audiology Program at Wake Forest University, was hit with an episode of vertigo himself recently. He described how he used that focusing technique, training his eyes on a doorknob. I doubt he would ever endorse focusing on the road from behind the wheel of a car as a cure.

I watch my diet. Migraine-associated vertigo, also called vestibular vertigo, is triggered by many delicious foods, among other causes. The Meniere’s Diet is similar. If you look at the list at the banned foods, you may wonder if there is anything you can eat. The Vestibular Disorders Association recommends avoiding red wine, chicken liver, smoked meats, yogurt, chocolate, bananas, citrus fruits, figs, ripened cheeses (for example,  cheddar and Brie) and nuts. All these foods contain the amino acid tyramine. The association also recommends avoiding caffeine and alcohol. Sometimes salt intake is restricted. Aged meats are easy to avoid. Caffeine is not.

Like many with vertigo, I take preventive medication. For me it’s been a small dose of the tricyclic antidepressant amitriptyline, the generic for Elavil. (The dosage is much lower than would be used to treat depression.) That dose clearly had stopped being effective, so now I am taking a larger dose, still well below the antidepressant level. The fact that I’m writing this is an indication that the brain fog is starting to lift. I’m also signed up for vestibular therapy, which is a big commitment of time. But if it works it will be worth it, and I’ll be able to go off the medication.

The biggest mystery to me is that every doctor I have consulted – two neurologists and three balance specialists – says that my vertigo is not related to my hearing loss. I do not have Meniere’s Disease. I have migraine-associated vertigo (MAV) or vestibular vertigo.

MAV is only recently defined and was frequently misdiagnosed as a variant of Meniere’s in the past. The overlap between the two is substantial, and a review study published last year in the journal Behavioral Neurology, comparing the “intimate relationship” between migraine-associated vertigo and Meniere’s, suggests that the underlying causal mechanism may be the same for both conditions. I’ll discuss that study in my next post.

I’d like to know how others handle vertigo. Please comment. We can all learn from each other’s experience.

 

 

30 thoughts on “Vertigo, Redux

  1. Hi Kathryn. Sorry you are going through this. I have heating loss and it was about the same time that I started losing my hearing that I had vertigo attacks, so I find it hard to believe the two aren’t related (or maybe it’s that they aren’t always related as in your case).
    Anyway I still get them occasionally but thankfully it hasn’t been too bad so I haven’t sought medication. I usually do the same thing, close my eyes and take it easy.
    There was a revolutionary discovery made a few years ago and it was all over the internet. I’m sure you’ve tried it but it is a modification of that procedure where they twist your head around to loosen up the salt crystals in your inner ear. People seemed to say it really worked. I would try every variant of that procedure to see if it helps.

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  2. Katherine, I am very sorry you are suffering through this. I’ve had incapacitating vertigo episodes for a decade or two, sometimes with nausea and vomiting, and have found relief from diazepam (Valium) prescribed by an ENT doctor about 12 years ago. I keep a supply on hand, and fortunately only need it once or twice a year.
    When I feel an attack coming on, I take one pill and have a nap. Usually I wake up feeling close to normal. My vertigo is perhaps connected to my hearing loss. (Cause was auto-immune inner ear disease finally diagnosed in 1997. I had a cochlear implant recently in my most deaf ear, and will continue to wear a hearing aid in the other. I had a couple of vertigo attacks the first week after my surgery.) I think you already know my surgeon, Jack Wazen, from the HLAA board. He wrote a book called “Dizzy” that might be of interest.

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    • I do know Dr. Jack Wazen but I didn’t know about his book. I’m going to order it right now.
      My vertigo didn’t start until about 3 years after I got a cochlear implant. Right after the implant I was dizzy and had one brief episode of vertigo. Then nothing until a big one hit me in 2012. It felt like that opened the dam. Though I get them much less often now, I do go through periods when I seem vulnerable to them.

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  3. Glad to have you back! I appreciate your straight-forward reporting and insights into the complex functions of our “ears”. I for one am guilty of taking too much for granted over the last 60 years, but am convinced there is real value to the community conversations that you are enabling with your audience. Best wishes for improvement in your personal health!

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  4. Katherine – I am truly sorry that you are having this trouble. First your advocacy for the hearing impaired is a valuable force that we do not want to be without. Second, as someone who has an on-goiing balance issue interspersed with full blown dizzy episodes, I send wishes for a quick recovery from this current episode.

    For several months after my CI operation I could not move unless I was holding onto something. I would go lurching across the room reaching for anything stationary. I do not know much about the relationship between vestibular issues and vertigo/dizziness except as it reveals itself to me in my daily life. I am sure I appear to be intoxicated, specially if I make a sudden change in direction. I have been given a series of exercises intended to strengthen the proprioceptic system. When hiking on irregular terrain I have a walking stick. I wonder how long it will be until a cane becomes standard equipment in my life. Age complicates most everything.

    Good luck and get well soon.

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  5. Sorry for the suffering, and I am learning that every case is so different from others. My first and the only time I had vertigo was some 30 years ago. I eventually found some help at House Clinic in LA. I was told that I would eventually lose the hearing in that ear and probably most in the other ear. Ten years ago I received a Cochlear Implant in my right ear, and wear a powerful regular aid in my left. Which leads me to being on a plant based diet and now illegal hemp oil used as a tension relief. Hate to say it but it’s all in our food. Our food chain is loaded with all the things that plug our veins. Only had that one vertigo experience and don’t want another. We thank you for your work.

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  6. Thank you for sharing this. I have also been diagnosed with MAV. I have hearing loss (in both ears) as well. I am on daily doses of Topamax, which seems to have helped, but I’m hoping I can eventually go off the medication. I think it may be related to hormonal changes (I’m 51), since it started about a year and a half ago.

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    • Mine didn’t start until I was 65, so I can’t blame it on hormones. The first episodes did come after a period of enormous stress, and I”m sure that helped trigger it. Then it went away for about 3 years (but I stayed on the medication. This more recent vertigo — frequent in the past few weeks, spaced out over weeks before that — came out of nowhere. I asked the doctor (neurologist) about Topomax. He kept me on amitriptylene but at a larger dose. Thank YOU for sharing too.

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  7. Hi Katherine,
    I”m so sorry about your vertigo attacks. Nothing worse than that horrible dizziness. Actually, the Epley maneuver usually works for me when it hits suddenly, but I’ve also been using the Fisher Wallace stimulator 15 minutes a day and taking magnesium (both at the advice of my migraine doctor) which has lowered the attacks to almost zero. There’s also a botox protocol that my doctor uses every 3-6 months. This is all for migraine but I feel it’s connected to my tinnitus and subsequent hearing loss. By the way, some of those diet recommendations and food triggers in my experience have very little material basis. Caffeine, for example, is actually helpful in alleviating the migraine.

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  8. So sorry you have to deal with this. I am SSD and have a Baha implant which works great for hearing in a more balanced way. The tinnitus is a major pain but don’t foresee any cure for that soon. I had a major vertigo attack a couple years ago so can relate somewhat to entering that wonderful spinning world. The result was nystagmus. With treatment from my audiologist and physical therapy it’s beat down to a manageable level most of the time. I still have to catch myself now and then as my body takes off without my brain if I stand too quickly or turn around faster than normal. You mentioned the one lasting thing that annoys me the most and that is some kind of lack of communication between my brain and body. In my case it’s just typing that has gotten most interesting. I have to double proofread everything in case my gremlin has thrown in a couple letters or insanely misspelled words. Here’s hoping your treatment turns things around for you. Please keep posting your thoughts and encouragement. We all need it!

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  9. I did vestibular rehab and it was so very worthwhile. I hadn’t realized how small my world had become because of all the movements I was afraid to do. When I started, the PT had to steady me going up and down stairs even with me holding the handrail. By the end, I could do it on my own…and without holding on to the rail! Nothing short of miraculous. Not that I don’t still get dizzy, but now the dizzy doesn’t have to shrink my world and I have Things I Can Do to keep myself as steady as possible. I hope the same for you.

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  10. I was diagnosed with Meniere’s in April this year. My attack of vertigo started in February and since than I drink Betahistine everyday. The vertigo stopped few days ago and now I am getting off Betahistine. My ENT says this pills should not be consumed for more than 50-60 days, but told me not to cut them before my vertigo goes away, so I have been taking them for more than 7 months. However, I feel that my vertigo is starting again and I don’t know what to do. I am afraid of my next attack because I go to work by bicycle and I am afraid I might get an accident if vertigo hits me in the street. I also have a sensorineural hearing loss which started many years before my vertigo attacks. I practice exercises for vestibular rehabilitation which help a bit, but cannot prevent my vertigo attacks.

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    • I was also initially diagnosed with Meniere’s but as doctors came to understand vertigo better the diagnosis changed to MAV. The treatments are similar but you might ask about MAV. Most people who have it take some kind of prophylactic medication. I recommend the website mvertigo.org. You can learn a lot about vertigo and dizziness there. It’s primarily about migraine vertigo but it’s useful for someone with Meniere’s.

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  11. Katherine I’m sorry to hear you’re suffering from this .i had my first vertigo attack in 2005 after I came down with mono .that actually led to discovery of my beginning hearing loss and dx of menieres ..my hearing loss slowly progressed I controlled the occasional vertigo with diet and took meclizine during an attack and slept it off..after the years my vertigo attacks slowed up ..I think they were worse when I was menopausal..but the hearing loss continued ..in fact I accepted the hearing loss vs having the vertigo attacks but I keep up that diet and always have meclizine with me..I was really amazed after my recent CI SURGERY that I didn’t get vertigo .but this new ENT does not think I have Menieres ..no balance issues no fluctuations of hearing loss ..there seems a lot they still are learning about vertigo but it does seem a coincidence your first attack was after the surgery !i hope the therapy helps you !thank you for posting the diet I didn’t know about avoiding nuts !

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    • Thanks for this interesting comment. The first vertigo attack was very brief and it was right after I got back from the hospital for the c.i. surgery. Then I didn’t have any more trouble for three and a half years, so I don’t think it’s related to the c.i.

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  12. In regards to the mention of help oil I have family members who swear by legal CBD Oil..one uses it to control migraines (that weren’t able to be controlled by ant medications Drs gave him)
    The other to control her “brain fog” after surgery to remove a benign brain tumor ..?? Worth looking into for MAV??

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  13. Having been diagnosed with Meniere’s Disease in 2001, I experienced acute vertigo attacks intermittently for 10 years, managed with medication including intra-tympanic Decadron injections when episodes were especially severe (close together and lasting at times for days). Eventually that no longer helped and after inner ear surgery which didn not alleviate the problems, I consented to gentamycin intra-tympanically and have been symptom-free for 6 years, with most of the hearing in the ear gone (a small price to pay at that point.) My low sodium diet and use of a diuretic continue along with careful hydration and active exercise. Long term use of Allegra has stopped. When nausea and vomiting were evident I found the use of easy-melt, no liquid Zentrip strips (meclizine) to be very useful. At the time I bought them locally at Walgreen’s Pharmacy and now i think they are only available online at Amazon and Walgreens. About the side of a band-aid and flat I had them everywhere I might need them (purse, work, bedstand…) as I did not need to swallow anything and induce more problems. Even the chewable Bonine further upset my stomach so these were better, though the taste is not appealing. Many times I could avert a full-blown attack by immediately lying down completely still, like you, Katherine, usually in the bathroom where, at home, I kept a “kit” handy in each with necessities including blankets to lie on and under close to the sink and toilet as walking was not a possibility. My thoughts helped pass the time recounting familiar songs and writings, and focusing on others with life-threatening challenges, as I knew mine, though difficult, would pass. Best wishes to you, and hopes for alleviation of your symptoms with a return to the activities you enjoy.

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    • I also was surprised by the number of comments. I guess we don’t usually see active vertigo so we don’t realize how common it is. BPPV is surprisingly common — I forget the numbers right now. I met John Carey a few years ago when I was researching my memoir of hearing loss, Shouting Won’t Help. I’ve often wished I llived close enough to Baltimore for him to be my doctor.

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  14. Katherine, Will you attend the ALDA convention in Orlando in Oct.?
    It would be nice to have a conversation, even though you may
    not remember me. Adelaide Zabriskie

    Also, I would like your blog to come to this gmail address.
    Thank you for your sharing, it is so hopeful.

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