Seven Things You Can Do To Help Manage Your Vertigo

Have you seen Inside a Vertigo Attack? I never expected the kinds of comments I’m getting. I suspect there are not too many first-person accounts of what it’s like to live with vertigo.

I live with a form of dizziness called oscillopsia. I have no vestibulo-ocular reflex on my right side. That means when my head goes up and down, my field of vision also moves up and down. When my head goes side to side, my field of vision goes side to side. It’s quite disorienting. (Yes, this stinks.) My medication dampens the effects of this vertigo.

I only have BPPV when I fall down. Falling is what appears to dislodge my crystals.

Here’s how I maintain what, for me, is normal:

  1. Get enough good sleep. I seem to need more sleep than I used to need. I need about eight good hours every night. I can try to shortchange myself, but I’ll fall asleep on the couch at night. Of course, I see nothing wrong with a “couch nap” before I go to bed anyway. Make sure you have uninterrupted sleep. Debug your sleep. You need to recharge your body, so your best self can get through the next day. When you have a vestibular disorder, you use a lot of brain energy just remaining upright.
  2. Stay hydrated throughout the day. Water is key. I drink green tea in the morning and a lot of seltzer because I like it. I don’t like cold water or very hot beverages. Watch your caffeine. Some is okay. A lot is not good for me.
    1. Updated Dec 31, 2015: As evidenced by the comments below, don’t just watch your caffeine. Eliminate it. You might discover that caffeine, even just a small amount, makes your vertigo much worse.
  3. Stay away from lots of sodium. I discovered that MSG could trigger a vertigo attack. I felt uncomfortable now after eating what I thought was a reasonable amount of smoked salmon. What you used to eat may not be what you can eat now.
  4. Watch your sugar. I low carb, and have for many years. I do it out of choice. Every so often, I allow myself a treat. But on those occasions, I have noticed I become much dizzier. Is there a connection? I think so. I am much more vigilant now and feel much better the more I stick to my low carb diet.
  5. Assess your ability to walk on your own. Do you need assistance? My life improved dramatically once I started using a cane. My cane allows me to walk and not have to concentrate so hard when I do walk. Updated: I now use a rollator outside the house. I feel much more capable and stable.
  6. Ask for help when you need it. When I travel to conferences, I feel as if I have an army of friends and colleagues all watching out for me. Staying hydrated is especially difficult at conferences. Everyone is quite politically correct these days, so it’s harder to get bottle of water. It’s quite easy to get bottles of soda, which either have sugar or caffeine. I ask for help when I’m not traveling, too.
  7. Keep a journal. Your vertigo is specific to you. Only you will know your triggers. Just because I think something is useful does not mean you will find it useful.

A bonus #8: take a look at the Books page. I especially found the Gonzales book, Surviving Survival: The Art and Science of Resilience very helpful.

Here’s a bonus #9: Find an ENT (first) who specializes in vestibular symptoms. Not all do. If your ENT doesn’t help you, find a neurologist. You need a diagnosis. (Updated Jul 18, 2016.)

Your vertigo is based in your inner ear. Your inner ear is the size of your pinky fingernail. We have inadequate imaging that far into our brains. We have a few cc’s of liquid in our inner ears. Clearly, these are sensitive systems. The fact that they work most of the time is a miracle.

Take a look at the what the Vestibular Disorders Association has to say about your vertigo, too.

You have to become an expert on your body. You have to see your own reality and make choices about your body, your medication, and your lifestyle that fit for you. Good luck.

108 thoughts on “Seven Things You Can Do To Help Manage Your Vertigo

  1. Suzanne

    Thank you!

    My last go round with vertigo was 2002, and web logs were few and far between, yours was the first I found after having an objective vertigo episode a few weeks back.

    I’ve been following many of your pointers. Also, I found something anecdotal, and I’m trying to find more evidence that supports minimizing exposure to fluorescent lighting. The only thing I draw from it is that there is some minute flickering that we cannot see, but it affects those of us with this issue.

    Have you found anything on this?

    1. johanna Post author

      Hi Suzanne,

      I do have problems with what I think of as “strob-y-lights.” Lights that pulse bother me. Regular fluorescent lighting doesn’t bother *me*, but I don’t have BPPV, either. I do have trouble with insufficient lighting in general. I have trouble with pulsing lights. But they don’t have to be actual strobe lights. I have some sensitivity to pulsing sound and pulsing lights. I wish I could pin it down, but it’s so uncomfortable, I leave whenever possible.

      I wouldn’t be surprised if each of us had unique responses.

  2. Violeta

    Dear Johanna,
    I have Menieres Disease. While we (vertigo sufferers) all have our go-to remedies and coping mechanisms, I just wanted to share that I have found very reliable relief in vigorous exercise, i.e. running. (I run four days a week for at least 30 minutes.) Last summer, I was having approximately one drop-attack every two weeks, and milder attacks almost every day. In August 2014, I started running and the attacks stopped entirely. (I started out walking, then slowly was able to run 5, 10, 15 minutes straight over the course of eight weeks.) Running made the dizziness worse at the beginning, but eventually it went away. In December, I hurt my ankle and couldn’t run for a couple of months. The attacks came back. When I started running again in February, the attacks went away. Now I’ve been laid out for a couple of months due to sciatica. A week ago, the attacks came back with a vengeance. Like you, I’m not a doctor and I can only surmise there are many causal effects and correlations at play here (maybe exercise helps me work off excess anxiety, maybe it helps with balance, who knows). What I do know is that living vertigo-free is worth all the physical pain running causes and all the lifestyle changes I’ve had to make to do it (no more socializing on running days, for example).

    Thanks for writing this blog. I’ve used it many times to explain to friends and co-workers what it feels like to live with this invisible and debilitating problem.

    1. johanna Post author

      HI Violeta, good for you! I am a huge fan of exercise. (I just got a FitBit Zip so I can compete with myself for my steps each day!) I also find that when I am physically active, I feel better about myself. I am impressed that the running helps prevent your attacks.

      It’s my pleasure to write this blog and build our little community. Thanks for telling people about it.

    2. Monica

      Hi Violeta,
      Thank you for sharing this tip of excersising, I suffer from meniere disease too and I am afraid to do excersise because of the movement is may cause my vertigo to appear. But I have noticed that when I am gardening or taking a walk my dizziness disappears. Even when I am active after my two year old daughter I haven’t had an episode. I will try to introduce running slowly.
      I do have a low salt diet, drink water but I will stop drinking coffee. I have been reading that caffein may trigger vertigo as well. I do drink green tea every day.

    3. Agnes Boateng Gubas

      OMG! We are trying to figure out what’s wrong with me! I run 5K and have a vertigo attack that won’t go away! I also have nystagmus. I actually have very limited carb diet almost gluten free, no soda, the only thing that helps me are amino acids. I have other health issues so it’s hard to determine the underlying reason. But you are right every time I would run I would end up with nausea and vertigo noises in my right ear, but doctor would say that I am dehydrated even that I say that I make sure that I drink plenty of fluids before and after I run. I am a runner since I was 7 years old!!! Going around from doctor to doctor is frustrating and there is no help!

      1. johanna Post author

        Agnes, make sure you see an ENT or a neurologist who specializes in dizziness. I’m not a runner so I don’t know enough about your hydration when you run. If I were you, I would change my workout routine, check my hydration and see if anything changes on the days I don’t run.

  3. Florence Weintraub

    After drinking coffee I had flare-ups of vertigo so severe I couldn’t stand or walk on my own for many hours, even with a cane.
    Without coffee, my symptoms are far milder, shorter, and manageable, tho i’d be far happier without them.
    I hate giving up caffeine, but I guess there are worse things.

    1. johanna Post author

      HI Florence, yes, I noticed a similar problem. I do drink green tea, but it has much less caffeine than a cup of coffee.

      Best of luck to you.

  4. Bljoshi

    I am very much satisfied by your views and guidance. According to my ent doctor i am suffering from right side vertigo .

    Medicine of vertigo i.e vertigo 16 mg stopped only using micro D3 tab once in a week and SUPERCAL K2 (OD) .

    And going morning walk alone and reading news paper /watching TV and now dont have any problem.

    Only feel heaviness in the mind (Skull -center )

    Taken the all prescription test of of BP /DIBETIS/CHOLESTEROL and found these are normal and in limit and report of MRI Brain is also normal.

    Sometimes feels heaviness in forehead and sleeping flat without soft pillow

    Doing exercises 4 times in a day.

    Once again thanks for positive advise.

    Regards
    Bljoshi

    1. johanna Post author

      I’m glad your MRI is clear! I sleep on either two pillows or a wedge and that helps me, too.

      I’m delighted you find this useful. Best wishes for your eventual recovery.

  5. Melissa

    Thank you for these seven steps on how to manage my vertigo. I sometimes forget that after being diagnosed with vertigo, I can’t do things the way I used to. I’ve had vertigo for at least a year now. I have weeks or months when I don’t have it and weeks and months when I do have it. Many people do not realize how debilitating it is and they do not comprehend it at all.

    1. johanna Post author

      Melissa, thanks for letting me know you found this useful.

      I, too, normally just keep going. Yesterday, I attended a morning user group meeting. They had run out of decaf coffee and the hotel told me they were brewing a new pot. Well, I don’t think they put decaf in the urn. I am pretty sure it was real coffee. I got dizzy after just a half cup. Grumble. I was better after drinking a ton of water and a couple of hours. I kept going after that :-)

  6. Randall T.

    I haven’t had any more vertigo episodes in over a year thank God. I was having severe attacks several times a day and it would even wake me from a deep sleep. I eventually found a medication called meclizine 25mg and it would help the severity of the attacks but not stop them entirely. I soon became fearful of driving for obvious reasons. My attacks were severe enough for me to vomit till I was dehydrated. I knew my quality of life was non-existent and I had to try to find some kind of help. I even had to visit the emergency room and was transported by ambulance because I couldn’t even stand much less walk and it sent my blood pressure through the roof. The ER doctor just said I had a combination of HBP, Vertigo, and dehydration after stabilizing me. After researching the subject more I found someone’s story that said they had found that caffeine was triggering their vertigo. I recalled that for years I had been taking over the counter 200mg caffeine tablets to energize myself because I’ve never liked coffee and needed the boost in the morning. I really didn’t think the caffeine could possibly be doing this to me but decided to stop taking it just to eliminate that factor. Finding that information literally changed my life because after stopping taking the caffeine over a year ago, I’ve never had vertigo again. So my advise is this, if you have vertigo, cut out the caffeine and see if it helps you too. That may just be your answer as well.

    1. johanna Post author

      HI Randall, yes, I also found relief with meclizine at the beginning of my journey. You are not the only one to realize caffeine is a possible culprit. Maybe I should update my tips to include “watch your caffeine.” I had an incident a couple of weeks ago (see my other comment re the coffee at a public event).

      I am delighted that you have not had an attack in a year. I hope you never have another one.

    2. christine andreou

      Thanks for your post i had 2 attacks of vertigo very bad with vomiting too i think caffein trigers it off even though t drink only one decaf coffee per day need to stop this hope it helps .

      1. johanna Post author

        Christine, you could try eliminating coffee and see what happens. You might keep that one cup of decaf and add much more water to see if that helps. I know that for *me*, being dehydrated is a disaster. Decaf coffee is not bad, and I might not drink enough water if I have that one cup of decaf. Time for you to put on your scientist hat!

    1. johanna Post author

      HI RitaAnn, do you mean green tea? I drink a cup of green tea each day, in the morning. I do not add honey. I find that adding sugar increases my lightheadedness. I am not a doctor, so take what I say and apply it to you.

      Some people notice the caffeine in green tea. Some don’t. I would notice the sugar. Others might not. Please think about what you need to do for you.

      1. Remy Zorn

        Hi!
        Firstly.. i just wanted to say how great it is to read your post’s.. it makes me feel like im not alone!
        Last year in July i had my first vertigo attack.. the actual spinning lasted around 30 seconds after i fell off my bed.. then i was bed ridden for 2 weeks straight without being able to move otherwise i would vomit! The third week i started getting better and was able to slowly walk (with alot of difficulty) i went to the doctors and he gave me Serc 16 & said i had BPPV… within a week i was normal again.

        Now, i chose to start living life as i usually would.. probably a bad idea because i just got vertigo again on Tuesday the 5th.

        Weirdly enough.. i didnt have 100% spin out.. i looked up to hug a friend.. and felt dizzy.. so i quickly sat on the floor and stared at a certain spot. And never felt the spinning attack..
        However.. i am still unable to walk properly, still dizzy, still get nauseating in certain situations and its been 5 days. I am hoping that because this attack was no where near as horrible.. it might go away quicker then 3 weeks like last time.
        I have an appointment tomorrow to get my first epley maneuver done.. i am worried it might make me worse.. do you know much about the epley?

        Thank you!
        Remy.
        23 years old – female. (If that changes anything in regards to vertigo)

        1. johanna Post author

          HI Remy, For *me*, I don’t restrict my life because of my dizziness. I never know when it will hit.

          Since you are still dizzy, I strongly recommend you see an ENT. If they can explain why you have vertigo, you will know more about what to do.

          I have done the Epley and it helped me. I have not done the Brandt-Daroff, but they have helped other people. The real question is why do you have vertigo? Are they sure it’s the crystals and not something else?

          I did vestibular therapy and it helped me a little. If you have BPPV, it might help a lot. Make sure you leave with instructions for how to do whatever exercises they give you yourself.

          I’m delighted you found the posts helpful. Make sure your docs are as helpful :-) Best wishes to you.

  7. NV

    So glad I found this blog. Several months ago I was diagnosed with possible vestibular migraine, although, from all I’m reading online, my symptoms are more in line with Meniere’s, unfortunately. Not quite sure why the ENT doc ruled that out given my symptoms. I had my first attack of vertigo in October immediately upon waking in the morn. The room wasn’t spinning…it’s more like I’m on a boat that is rocking and rolling. However, when I closed my eyes, there was a definite spinning sensation. The initial attack wasn’t very long…less than 15 minutes…but the subsequent attacks are getting progressively longer with the last two lasting over two-three hours. BPV was the initial diagnosis until the length in time of each attack increased and positional testing in the doc’s office did not prompt an attack or show nystagmus.

    What I HAVE noticed is that drinking iced tea has brought on more than one of the attacks. That doesn’t, however, account for all the others as many occurred upon waking or when I’ve not had any caffeine at all (I don’t normally drink anything caffeinated but occasionally will have iced tea when eating out). Just last night I felt an attack coming on when I turned my head suddenly in the direction of something that fell to my side. Today, I drank iced tea for lunch and had a decaf iced coffee later. Now, my balance is off and I feel a vertigo attack is imminent. So, yes, caffeine may very well be a trigger for me.

    On the bright side, I’ve not had a full-blown attack in almost a month…the longest break yet since this all started. The ENT doc suggested I take magnesium for the vertigo since I was unwilling to start on meds or resort to sinus surgery or hearing aids as yet. I’m hoping the magnesium is what is helping (I take it with Vitamin D).

    Thank you for your suggestions as to how to manage the vertigo. Much appreciated.

    1. johanna Post author

      HI NV, well, I hope you don’t have Meniere’s. If you have lost some of your hearing with each attack, yes, I suspect you are correct. You might want a second opinion.

      I wonder in your case if it’s the ice, or the iced tea? I drink diet Snapple, but not with ice. (I am full of vices. This is just one.) One thing you might not know: decaf coffee still has some caffeine. Much less than regular coffee, but still has some. You might have hit a “too much caffeine point” with an iced tea in the morning and another decaf iced coffee later. Take a look here: http://www.math.utah.edu/~yplee/fun/caffeine.html. I was surprised.

      I take magnesium with my calcium every day. There is also someon who commented on Inside a Vertigo Attack about how much magnesium she takes.

      Glad you are finding these tips helpful. You are helping yourself, by tracking what you eat and drink. We have to be our own scientists and gather data to help ourselves. Best of luck to you.

  8. KC

    Thank you for sharing your experiences.

    I have had bouts of vertigo that started when I was in my late 20s. Since then, these bouts have increased in frequency. Vertigo is so debilitating and people don’t seem to understand how debilitating it actually is until they have experienced it themselves.

    My vertigo would last about a month. What I’ve noticed about my vertigo is that it usually happened in the wintertime. When I first started getting it, I would find the one position I could keep my head to maintain not-spinning. I would stay like that for weeks, my head creaked to the side, until the vertigo went away. After a few bouts, I found that it was better if I didn’t avoid the head position that made me dizzy. Then I found that the exercise I avoided (broomball), while it was worse at first, helped me in the long run.

    Vertigo was something I used to get about every other year and it lasted about a month, but I’ve had chronic vertigo for the past few years. What I have been experiencing is a milder version where I don’t have full on spinning enough to create panic attacks, which it does when I have usual vertigo. This chronic version has been going on since I moved to a new house, especially when I sleep in my bedroom. I have no idea if it’s a mold or something else in the environment but it has only been chronic while living in this house.

    I also have neck/cervical spine issues and there are people who have cervical vertigo, although it seems that not all doctors agree that it is a valid thing.

    Vertigo affects my jobs and my ability to parent as a single parent. It has been so hard and I’ve learned to appreciate the times when I feel well.

    Thanks again for your posts. KC

    1. johanna Post author

      KC, thanks for sharing your experience. I found that altitude can affect my vertigo, also. I can’t tell if cold affects me—I’m always a little dizzy. I sleep on a wedge or two pillows to help my inner ear be at the right place.

      Glad you are getting some benefit from these posts.

    2. Brenda

      Wow I totally relate this your comment. My vertigo is getting worse and worse. I am on day 6 of one of my worst attacks. Too miserable to go to the dr and missed a whole week of work. (It has been no more then 4 days in the past) Today I have found something strange. I dont usually like or eat popsicles but as long as I am eating one I am able to sit up without feeling horrible. The “brain freeze” has been a helpful relief.
      Brenda

    3. Joy

      Have you been to an upper cervical chiropractor? If you haven’t yet, Google ‘Meniere’s and Atlas adjustments’. It has made a world of difference for me, seriously night and day. I actually have my life back! Good luck.

  9. Josh

    I am glad I found this blog. I had an attack that woke me up. I had to miss work yesterday, and today. I tried the Epley maneuver yesterday on myself, and it worked to bring the vertigo under control, and I could go for my daily run. I woke up this morning, and the right side was a no go. I tried the Epley maneuver again, and it worked to a point. I still feel full in the skull, and unsure of moving around. Since all people and episodes are different, I thank you, and everyone here, for sharing their experiences so others might find some relief.

    1. johanna Post author

      Hi Josh, good for you that you can use the Epley and bring your vertigo under control. A run! I am quite impressed.

      I wonder if it’s time for you to see an ENT to learn why you have vertigo. Best wishes to you.

  10. Patti

    My vertigo is triggered by lying on my right side. I also think eating chocolate at night isn’t good. If things start going goofy….i close my eyes and lie down on my left side. I can tell when it eases up.
    If I wake up with Vertigo, it takes 6-7 hours before I can walk perfectly. Walking from holding on to things is annoying but necessary.

    1. johanna Post author

      Patti, it could be the chocolate itself. Or, it could be the caffeine and sugar in the chocolate, especially if you eat the chocolate with coffee.

      Good that you know what can trigger your vertigo. Wow, 6-7 hours to recover. I go to sleep to sleep off an attack.

      I am always amazed at the variety of triggers and ways to manage our responses.

  11. Maureen

    Hi Johanna, thank you for creating this post. I too suffer from Vertigo. My episodes last 3 – 4 hours with varied severity. For a while attacks were happening 3 or 4 times a week over a period of almost a year. My doctor told me to be cautious about driving. I had CAT scan of my brain and everything was negative. 3 doctors felt it is Meiniere’s disease. My doctor prescribed Meclizine, which helps if used daily during the times when I have episodes. My last attack was October 2015. It was a very dark time in my life. I was afraid to go anywhere alone. I began to drink a lot of water to stay hydrated.

    My children recently asked if I have done anything different besides keeping hydrated. After much thought, I realized that I stopped drinking coffee! I have 3 cups of green tea everyday and I add a little raw honey. This morning I had breakfast with my daughter. I had 1/2 cup of coffee. I stopped at the grocery store on my home and felt dizzy-not room spinning vertigo- but I immediately took medicine. I believe that the link of caffeine to Vertigo is real. It makes sense because coffee dehydrates and green tea hydrates.

    1. johanna Post author

      Hi Maureen, wow, what a story! I was not aware that green tea make is a good hydrator. I like it and it has much less caffeine (almost none) so I can drink it. I drink the equivalent of two cups a day (one teabag, one very large mug).

      You might want to find a neuro who will do an MRI. If you don’t have hearing loss, you don’t have Meniere’s. (If I were you, I would want a confirming diagnosis. But, that’s me.) You might want vestibular testing to see where your problem us. Although, you might know, given the frequency of your attacks.

      Best wishes to you.

  12. Nancy Smith

    Hi, I’m just getting over my first episode of vertigo. ThAnk you for this blog, I’ve read many replies and feel more like im just one of many. Yesterday, the ENT did the Eppely maneuver and today I’ve not had any skinning episodes. However I feel very tired and sluggish, probably because this started over
    a week ago. I too have been wondering if coffee has been a factor. I am going to decrease the coffee and see if that helps. I was extremely scared Sven this happened and M still a bit shaken by this. I am also going to try magnesium to see if that will help. I’m wondering if anyone has any suggestions of trying to just push through this or if it’s beneficial to rest more than before vertigo? God bless all.

    1. johanna Post author

      HI Nancy, I take magnesium as part of my calcium supplement. I have no idea if it helps.

      I do know that when I have a vertigo attack, I’m tired for several days. When I have BPPV, the Epley helps. I don’t know if that makes me tired or if the vertigo attack before that made me tired. I think it’s the vertigo itself. Our brains have to work very hard to do anything when we are dizzy.

      I try to exercise every day. I also try to sleep well every day. I can’t “push” through things when I am very dizzy. I think it depends on your dizziness level.

      1. Nancy Smith

        Thank you Joanna. Good to know being this tired is part of it. Did it take awhile after the Eppely or how did that work for you. ? It’s a scary thing, this vertigo. How about sweating. I’ve been sweating pretty much with this, has anyone else had excessive sweating with vertigo??

        1. johanna Post author

          After (and during) a vertigo attack, I’m exhausted. I almost always sleep it off. I am pretty sure that after the Epley, I’m also tired. I haven’t done them in a while, so I don’t remember. Maybe someone else can comment.

          I do not manage my temperature well, but that could be any number of things: I am (finally) in menopause so all bets are off, and I have a neuromuscular condition that makes it easy for me to become cold very fast. I seem to sweat at night, when my hubby is sleeping quietly. To be honest, sweating is not so big a deal for me. Again, maybe someone else has other ideas.

  13. Marge

    Hi Johanna,
    My Menieres vertigo started 10 yrs ago. At first it was a couple of times a year but now it is much more often. Quality of life is challenging.
    I have read everything I can find on the subject. Your site has helped a lot.
    It would help me tolerate my condition if I could find a support group of people with vertigo that could truly understand. But not any of my doctors know know of any. Do you have any suggestions on how to find one?

    1. johanna Post author

      HI Marge, Thanks, glad to know we all helped. I recommend PatientsLikeMe.com. They have tons of conditions, common and uncommon.

      Big sigh. ENTs and otoneurologists are so lacking in humanity that I am not surprised they did not think you might need a support group. Sorry for the bluntness, but every ENT and oto-neuro I have seen are wonderful docs and total jerks in terms of their human-ness. And, I’m a pretty hard-boiled egg. :-)

      I would also look into the vestibular association and see if they have suggestions. (There’s also a link on the right hand side of this site.) Between all your docs and the Vestibular Association and PLM, you should be able to find someone to discuss your concerns with. I wish you much luck.

      (My oto-neuro considered the roto-rooter of my inner ear to calm it down. I have already lost all the hearing in that ear. I don’t know if that is a possibility or even something you want to consider. I recommend less drastic measures first. I am using baclofen and that has calmed the spasms in my *middle* ear which transferred the problem to my inner ear. Well, that’s my theory. We don’t quite know.)

  14. Marge

    Hi Johanna,
    Thanks for info. I agree with you on everything you wrote concerning ENTs. They don’t have a clue how really frustrating it can be.
    I try to stay upbeat but sometimes it just gets very overwhelming.
    I will check out the website you suggested today….Thanks again

  15. Helen Nock

    Thank you very much for this article. I started with a positional vertigo…lying down and getting up caused rapid spinning for a few seconds. Months later it morphed into constant balance problems – tipping and lurching. Absolutely useless and frightening journey through gps and neurologist. Eventually diagnosed with a dysfunctional balance organ on left side. I’m not sure what that its as hard to find info. The specialist told me a combo of that and neck problems would impact. A year later I was diagnosed with severe hypothyroidism (hashimoto’s). Altogether there could one or more things going on, mechanical and or autoimmune. The balance specialistic said the damaged organ was what they trendily termed ‘an event’ of unknown cause and would be for life, symptoms exasperated by stress. I have managed it well for the last two or more years gaining full mobility but, alas, taking a backward slide into full blown vertigo, but slow s[pinning, of late. I’m wondering if it is crystal movement as I have had repeats. But this is triggered by additional unilateral movement and…I think, caffeine. Hence finding your post after keying in vertigo and caffeine.
    Many thanks again…the right discovery to ramp up my self care :)

    1. johanna Post author

      HI Helen, I would ask for the specific diagnosis, A “dysfunctional balance organ” can mean many things. You might have a semi-circular canal problem (as I do). It might be something else. Given the experience here on this site, I would ask for my real medical diagnosis to then be able to search better. Well, that’s me.

      Ah yes, our idiopathic problems–it would be lovely to know what caused our organs to go haywire, but idiopathic is just that–unknown cause. I have no idea if Hashimoto’s is related or if one of your symptoms is incidental to the other. My suspicion is that they are related, but I have no idea.

      If you are getting worse, I would definitely start with an ENT and then see a neurologist of some sort. I would push for that ENT or neuro to understand the vestibular issues that you have. Yes, you can live with vertigo. You don’t have to be that uncomfortable.

      Yes, the caffeine thing appears to be true. Oh well.

  16. Joe L

    Hello everyone
    I have had episodes of dizziness for many years the worse of it happening
    Within these last few years.
    I had polio as a young child and have
    Read that it can be a result of it.
    I read your article and have cut out the caffeine –
    The Drs have basically diagnosed me
    with unconclusive vertigo. As I have all the symptoms but when they do the
    Epley maneuver it doesn’t make the bppv come on. I Am being bounced around and back and forth to an
    ENT Dr, Neurologist, Nutritionist,
    And a top NY Vestibular clinic.
    Still no help in sight.
    Has anyone seen a specialist that they have seen results with and can you please share the Drs info.
    Thank you!

    1. johanna Post author

      Hi Joe, as a fellow “medical mystery” patient, I can only tell you some of my experience. I strongly recommend you see an otoneurologist and/or a neuromuscular neurologist. The otoneurologist specializes in balance issues from the brain perspective, as opposed to an ENT who starts with the ear.

      The neuromuscular neurologist specializes in the brain’s effect on muscles and the vestibular system. You will find them in ALS clinics. No, I am sure you don’t have ALS. However, since you have neuromuscular issues, and they see rare conditions, you might have better luck. I will send you a private email, also.

  17. Aisha

    Thank you for these great tips. Living with vertigo is not easy especially with a 6 month old baby. Ever since my first attack one and half years ago, I have had couple of attacks to date. However after the last bppv attack eight months ago I am constantly off balance and while I lay down to sleep it feels like I am on a water bed, even my own breathing makes my head think that I am falling down and My whole body feels like it’s moving and this keeps me up all night. I have seen a doctor who said my balance is not that bad!He prescribed some medication but I am afraid to take them because I am breastfeeding now.
    The constant off balance feeling Is reducing the quality of my life and I feel afraid I Will never get better again. I keep constantly thinking about when will I have another attack or horrible vertigo. How do you stop thinking about this and let go off the fear?

    1. johanna Post author

      Hi Aisha, If I were you, I would ask the doc who prescribed the meds if they are a problem for the baby. Many meds are just fine. I happened to nurse my children for 9 months and 1 year, and if my health and ability to take care of them were at risk, I would have reevaluated the nursing. You’ve done the majority of the immunization-providing for your baby by now.

      If you have “constant” BPPV, I would find another doc. “Not bad” vertigo is not a way to live. (I hope this doc was an ENT? If not, get thee to an ENT!!)

      As for the fear, I have several approaches. I bet other people will chime in with their perspectives. (I hope they do.)
      – I don’t stress about the stuff I have no control over. I wasn’t always this clear about the not stressing. I have had to be, with my vertigo. Instead, I focus on what I can do, not the fear of the unknown. So, my words to me are: “What can you do now? How can you keep yourself as healthy as possible?”
      – I eat and sleep to protect me. I low-carb and watch my salt, so I don’t get sugar or salt spikes. I am attempting to lose weight. (Let’s not go there, okay? :-) I watch my caffeine, all things I can be proactive about. I get a ton of sleep, normally 7-8 hours/night. (As the parent of a baby, you might have trouble with this. Hubby and I used Ferber to train our children to sleep through the night at about 5-6 months.)

      I would see an ENT or a neurologist asap. You need to understand why you have vertigo. You can get vestibular therapy. If you have “only” BPPV, vestibular therapy might work quite well for you.

      Since I have had vertigo attacks under all conditions: awake, asleep, sitting, standing, driving, after any meal, even if I am hydrated, I just don’t anticipate the next one. If I did, I would make myself even more crazy. I have seen several ENTs and neurologists for help understanding what causes my vertigo. If you have not seen an ENT who specializes in vestibular issues, find one. You owe it to yourself, never mind your family, to be as healthy as you can be.

  18. Aisha

    Thank you so much for the kind words.
    I will go and see a neurologist soon. If it’s only bppv it should be better after a while or maybe not. One can never understand this. But I know the constant giddy feeling never leaves me. Although it’s not a violent spinning sensation the constant giddiness is a nightmare making it worse during the night as I mentioned in my previous post.
    The problem is here in Maldives is doctor’s are not specialized in this field. Hence they dismiss it as something that will go away. No one talks about vertigo so you suffer silently and alone. But reading from all the comments I understand there is no medication to correct this but only we are all trying our best to live with it.

  19. John

    Came cross your website here. In a weird way it’s sort of comforting knowing there are other people like me out there all going through the same hell. I really feel that everybody’s input is extremely helpful. In reading some of the responses I have a question that I hope you or someone could answer. Why does taking a magnesium supplement help with Vertigo? And I see that with a lot of sufferers here, many have seen less or milder occurrences when they dropped caffeine, and in your case excess sugar and salt. I’m not much of a coffe drinker (maybe have 4 or 5 cups a month). Sometimes I’ll have a decaf, and other times regular. I find that they both give me a very mild sense of dizziness until the caffeine wears off. I think, I will not have any for a while and see if that has any effect. I guess the biggest culprit for me is drinking diet soda. Drink about 4-6 cans per week, but I’m trying to drink more water, and seltzer. But I’m sure caffeine is caffeine regardless of the source. And yes, Chocolate. Lots of chocolate. Damn, why does it have to be chocolate? From what I read here, I’m going to cut out the caffeine all together and try to decrease my sugar & salt intake. I will try anything that may help alleviate these attacks. I had vertigo incidents since I was a kid. Most occurrences but not all were initiated when my family went on long car rides. Everyone just said ” oh, he’s just car sick” as I got older, the attacks subsided for many years, then about 5 years ago they came back with a vengeance. For me they always occur when I wake up in the morning. Went to see ENT’s, Neurologists etc. None really gave me an official diagnosis, but they did rule out Meniers Disease. They also tried to put me into this contraption that looks like something NASA would use to train astronauts. It simulates those head movements that everyone here talks about but your whole body is spun in all these crazy positions. Well after about 5 separate treatments in the “torture” chamber, it didn’t work. In fact everything they tried failed. They were so intrigued they actually made me a case study for medical students of the future to analyze! They told me I was an “anomaly” Yay! Just what I always wanted to be! I also found out that this condition runs in the family. My Aunt has it (severe), my sister also suffers from it occasionally and God knows who else that haven’t mentioned it to anybody yet. My attacks were very infrequent growing up. Was on like an 8 year cycle. But now as I’m getting older they occur more frequently, every few months and last for about a week to several months. Not necessarily the dizziness, but the associated aftershocks. I hope one day they can cure this. Maybe not in my life time but there is always hope. Well, I think I babbled enough. I will keep checking in from time to time here to empathize with you all. Thanks for being here and reading my story.

    1. johanna Post author

      John, Sorry you are also a medical mystery. (That’s what my docs told me.) I did have “normal” vestibular therapy at first, and it helped retrain my vestibular ocular reflex. Good luck with choosing what to eat/drink. For me, it makes a big difference. Of course, I am not you! I hope you find some relief.

  20. Brenda

    Hi
    I have a question. This is gotten worse and worse for me. Im missing a lot of work and often feel too ill to be able to get up to go back to the dr to get nowhere. Ive already been to an ent and he says no inner ear problem even though I I often feel fulness and rushing noises between my ears when a bout comes on. Do I need to be in the middle of an episode when seeing a neurologist? Because that is all but impossible. Or will he/she be able to diagnosed outside of an episode?
    Thanks
    Brenda

    1. johanna Post author

      Hi Brenda, you do not need to see a neurologist during an episode. (I agree, that would be impossible.) A (smart) neuro or an otoneurologist will include balance testing which will help you know if/how your inner ear is involved. From your description, I think there is something going on. You might need a different ENT. Not all ENTs know enough about vertigo. Find a vestibular person, ENT or neuro.

      The fact that “brain freeze” (from your other comment) helps you might be a clue of some sort. I don’t know enough.

  21. Sharon M

    Johanna,

    Thank goodness for this site! I am cutting out caffeine immediately! I never put any thought into this being part of the problem. My vertigo started back in January with an ambulance ride to the hospital because I thought I was having a stroke. They eventually diagnosed me with vertigo and I have been to an ENT, have not been to neurologist yet but am guessing that will be next. My most recent bout came when my husband and I were driving (in a convertible on the hottest day) and I felt this overwhelming tingly sensation mostly on one side of my body but it eventually made it to the other side. I also had a metallic taste in my mouth and thought the water I was drinking tasted disgusting (my husband tried it and said it was fine). I took my prescribed meclizine which tends to knock me out for quite a while. My bouts seem to be coming closer and closer with the last two happening within 3 weeks of one another. I drink way too much diet caffeinated soda and like my few pieces of chocolate every day! Going, going, gone!!!!! I am also going out to get some magnesium right now. I have a doctors appointment tomorrow to push for additional tests (had MRI, also went for that test that they put you in a room and tell you to look at different patterns on a screen, etc) It came back inconclusive so they are sticking with the “vertigo” diagnosis.

    1. johanna Post author

      Sharon, I’m delighted you found this helpful. As a chocoholic, I do not have to eliminate chocolate forever, but I do eat much less than before. It’s funny you said the thing about caffeine. I am at a workshop (listening today, teaching tomorrow) and I had my saccades just a little this morning. I bet the coffee they said was decaf was not.

      I am not surprised your taste is “off.” For me, when I have a vertigo attack or problems, I find that everything is just a little wrong. My taste, my vision are all a little off. I am sure there is a reason, but I don’t know what it is.

      Best wishes for learning a diagnosis. The closer you get to a diagnosis, the easier it will be for you to learn what to do for yourself.

  22. Corin hall

    I’m not sure what type of vertigo I have I do know my head spins when i move my head mine just stared so I’m really trying to adjust to it. It happens every day I’m afraid to go for a walk or run in fear of falling down when the spinning starts.I also love coffee I try to drink decaf instead. Any advice

    1. johanna Post author

      Hi Corin, get thee to an ENT asap! Seriously, you can’t diagnose your own vertigo. It could be as simple as BPPV. (Simple to diagnose, and you can learn to manage it.) You might have labyrinthitis, which is a (relatively) short-lived infection. It could be any number of things. Head movement will trigger many kinds of vertigo. An ENT will help you learn what causes your vertigo. Good idea to try decaf. The caffeine will not help. Best wishes.

  23. Raj

    Hi Johanna, Thank you for the great article. It’s been 3 weeks since i had my first dizziness experience and an ambulance ride to the ER. I have had many until now in these 3 weeks. But if i try to recollect, i have had a coffee every time i have had the dizziness and i was almost sure about that and avoiding coffee in the last few days. But since i haven’t had dizziness in the last few days and i had to rush to the office this morning, i could not take my usual energy drink today, so i went and got a coffee but with in a few sips i found something different and threw away the coffee. But the feeling continued for an hour and then i got the dizziness back when i reached my office. Thank god it did not come while i was driving. But my primary says as we have already see the CT (brain) and other tests related to heart, this looks like vertigo and do not need to see an ENT as yet. He prescribed me Meclizine and some other sleeping pills to get enough rest as i get so scared every time it hits me. But i am not satisfied as it is not diagnosed properly yet. I am definitely concerned as i am 36 years old with a 3 yr old kid and just came today to my office after 2 and half weeks of rest due to this issue. So, i am planning on seeing an ENT directly sometime next week and get some clarification about whether it is vertigo and what type it is. I haven’t told you about my symptoms, first day i had dizziness like i am going unconscious, it stayed for 15 mins and then it kept coming for about 3 hours and my heart beat just went up rapidly (due to the panic i guess). Then after 5 days i got another one but this time i had slight numbness on the left side of my face and lips. Felt nausea every time i had this coming. The numbness lasted for one day and went away next day but the nausea kept coming back every time i was hit. Slowly the dizziness have changed and it is like tingling all over from the bottom back of my head to the top of my head, or tingling on the edge of my nose or ears or cheek some times. But my primary doctor keeps saying there is nothing to worry and it would go away. He has not done anything to diagnose it except looking into my left ear and said it looks like you have some wax built up and gave me some ear drops to get it out. I have read some where that if you have dizziness along with numbness or tingling you should go check with your doctor as it could be serious. Please advise what i can do. I also have bad taste in my mouth sometimes when i get the symptoms and also it gets blurry rarely. I am also going for an MRI (of the brain) next week just to make sure that there is nothing on the brain. My primary only asked me to do the Brandt-Daroff exercise for a month along with the pills he gave. Is that enough? Should i be worried?

    1. johanna Post author

      Hi Raj, To *me*, your symptoms are a little wacko. Your primary doc might be a nice person, but he is not an ENT. Go to an ENT.

      Wax in your outer ear does not cause vertigo. (Even if it presses enough on the middle ear via the eardrum, it’s not possible for it to cause vertigo. I don’t know about the unconscious part. I have been awake for all of my vertigo attacks. You’ve had a couple of episodes already, right? What data does your doc have that this will resolve?

      Here’s something one of my neurologists told me: Do not search on the internet to diagnose yourself. You will terrify yourself. Instead, see an ENT. Maybe even an oto-neurologist or a regular neurologist to understand your nausea/vision/tingling.

      Get a diagnosis. Then decide if you want to worry (:-). And yes, mind the caffeine.

      If you do have an ongoing case of vertigo, ask for vestibular therapy. There are many more exercises than the Brandt-Daroff (or the Epley). You need a diagnosis to know which exercises to try. Best wishes to you.

  24. StephSpillz

    Hello everyone, I was reading through these comments and felt compelled to add my story and background.
    I think my issues with vertigo started a couple years ago. I would be at work (a desk job) and suddenly feel like I would fall through the floor. Like a fall in a dream. It would jolt me, and make me feel dizzy for a minute and then go back to normal. They were few and far between and I never thought much of it. Then in march this year. I had a real spinning vertigo attack! I felt like I had drank a bunch of alcohol visually. I had been sitting down in a recliner watching a movie, and turned my head and felt it. It took about 30 minutes to resolve fully.

    Then the big one happened a month later. Woke me from dead sleep. I had never been so sick in my life. The spinning was horrible, and balance was bad too. I thew up several times. It took about 3 hours to calm down enough to sleep.
    I slept for several hours. and still felt dizzy but no longer sick. I went to the emergency room. They said it was BPPV and gave me medicine, antivert and something for nausea. They said it should resolve in a few days.

    When a week went by, and I still felt like I was on a boat all day I went to my PCP. She also said BPPV and had me go next door to physical therapist. To see if I would benefit from eplay. He says he did not know what was causing it, but he saw no rapid eye movements and did not think it was BPPV. He gave me some stretches to do and sent me home.

    Things did get better. I actually felt 100% myself. for about a month or so. but one day I nodded in a yes motion and felt it come back. Not full blown vertigo like the first two. But the wavy boat feeling. Visually I feel like things are moving, or that I am moving when it is not the case. I do not feel like I have balance issues but I do feel popping and some fullness in my ears. After suffering for a couple more months. I went to ENT. She says that it was either vestibular nuritis. Or possible Miniere’s. I was given prednisone which I think helped the first few days.

    I will feel mostly myself for a couple of days, and then feel terrible for a week. No hearing loss. The ENT basically told me I have to wait it out to see if I have another really bad episode. Which I have not since April. Just ongoing sometimes barely manageable symptoms. It has been a month since I saw her. And I called back to have another visit to maybe try a prescription for diuretic.

    The things that have kept me mostly sane, are meclizine, motions sickness bands or sea bands, and peppermint essential oils. I am watching what I eat. But hard to tell if it is helping. I had pizza last night, and feel horrible today. Which could be due to the heavy salty food.

    I have not had the drop sensations anymore. If they were truly related, I may never know. Just constant floating, wavy motion feelings all the time. Sensory overload like a big store makes it way worse. Walking down a street or hallway also makes me feel off balance badly. I am hoping for some answers as my bad days very much out number the good ones.

    1. johanna Post author

      Steph, it’s good that you have no hearing loss. That pretty much rules out Meniere’s. Did you have an MRI? If there is anything to see, the MRI should pick it up.

      It almost sounds like labyrinthitis. (The link describes the difference between labyrinthitis and neuritis. I am out of my depth here.)

      Yes, sensory overload will overload your brain. Your brain is trying to manage your balance and vision because everything is compromised with vertigo. Expect challenges. I started with a cane about 6 months after my first vertigo attack after a very bad fall. I should have used a cane earlier. If you have “mal de mer” (wavy boat feeling), I wonder if you should see a different ENT, one who specializes in vestibular function. Good luck.

  25. Monica

    Thank you for these insights, they do help to notice I am not alone on the fight to live a normal life with vertigo. Mine looks like is related to meners disease. It is triggered by stress, lack of sleep and a not following a healthy diet. I am in a low salt diet and indeed was recommended to drink a lot of water. I am a single mom of a two year old daughter, so sleeping a good 8 hours is not something I currently do.

  26. Kari

    As with many others here I experience recurring bouts of vertigo. Always when I wake up and move, or a couple of times it wakes me up with pitching boat sensation. I have always been very dizzy with certain head movements like tilting back wards so avoid that. Rapid movement as well so I always stand up slowly. My husband has successfully used the Eply maneuver on me four times in four years, but with this latest episode it didn’t seem to work as effectively. It triggered the eye movements and definitely ended the acute vertigo but not the dizziness and head pressure which has lasted a week so far.

    A few people here note a heavy feeling or pressure in the head. This is one of my most debilitating symptoms. Following a vertigo episode this pressure or heaviness will last sometimes for up to three weeks. It makes me feel extremely drowsy and I have a kind of brain fog. I am wondering is this is common?

    For years I have that I just had allergies and seemed to find some relief from Allegra D. Anyone else use Suda fed or other decongestant to help?

    1. johanna Post author

      Hi Kari, I did use sudafed and Allegra to manage my post-nasal drip at the beginning. I now use Zyrtec when I need. However, the cause of my vertigo is often not my nose. If it is your nose, the decongestants will work. The real question is what causes your vertigo? An ENT who understands vestibular problems can help.

      As to the brain fog—yes, when I have a vertigo attack it takes me several days to recover all my thinking capacity.

  27. Pamela

    Oh WOW! It was comforting to read this blog. I have had VN symptoms for a year and a half. I had almost fully recovered, then had a mild whiplash in the car and it started up again, the rocking boat sensation all day long when I walk, sit, stand, etc. It’s calming down a bit now, but oh dear, I’ve been suffering again. Mine started with severe vertigo and I fell to the side and was caught by my husband. I had gotten out of bed in the middle of the night and there it was. We thought I was having a stroke–then the severe symptoms stopped but the dizziness in varying degrees, sometimes debilitating, sometimes more mild continued for months. At first, my body pulled to the left, and I had to be careful not to hit things as I walked. I had to nap everyday, and that would help, and I have to sleep eight hours each night to stay stable. It’s so scary and depressing. I had panic and anxiety attacks every day at first. I was prescribed Xanax for that and to sleep the first few weeks. I have been a trooper, but one day I just broke down and cried, at which point my ear screeched and popped and I improved a little. I didn’t have the MRI because I was improving pretty good at that point, when I saw the ENT and not my primary again. The ENT said it was vestibular neuritis–she tested my hearing to rule out Meniere’s. I didn’t have the MRI because I was improving pretty good at that point. I had not heard of the hydration focus and for two days I have tried that and voila, I have improved some again. Also, I drink coffee and I have noticed as others here, that it makes it worse, but I thought that might be psychological. From reading the posts, caffeine is certainly a culprit. I will need to wean myself from my 3-4 cups a day!! This is a horrible illness, one I wouldn’t wish on even my worst enemy. It has been debilitating for me and I had to retire from college teaching early. Oh yes, I taught online and couldn’t even look at the screen after my first episode without severe dizziness. And big box stores–terrible, and I couldn’t close my eyes in the shower either or I would fall over, and too, dark rooms bring it on. . . . still . . . more mild but noticeable . . . As I say, I was improving very well until the whiplash. Now, I feel like I have to climb back again to a more steady state. Thank you so much for this forum. I have learned so much and am heartened by what I am reading. Johanna, you are amazing! That is my gggrandmother’s name!

    1. johanna Post author

      Pamela, thank you. I am so happy you are finding other avenues to pursue with your science-experiment hat. Yes, I would certainly move to decaf at the minimum. Decaf coffee still has caffeine, which is why I drink one (very large) cup of green tea.

      If you don’t improve, I would ask for (demand!) an MRI. An MRI won’t tell you if it’s labyrinthitis or vestibular neuritis. (I think.) It will rule out other possibilities. If the whiplash made it worse, that might be a clue of some sort. I have no idea.

      I have trouble scrolling down a screen too fast, especially if there are jumping images. I have adapted somewhat, and I still have some trouble. While our symptoms are similar, our causes are not. You need to determine the cause of your vertigo.

      Thanks, re my name. It was my great-grandmother’s. I sort-of look like her, too. I feel quite blessed to have her name.

  28. Pamela

    Johanna,

    Thank you so much! for the detailed reply. Yes, decaf will be on my list now. And yes, too, I need to have the MRI if I don’t improve considerably very soon! I still have problems with images that scroll too fast, etc. I can relate . . . On a good day, it’s not so bad, but once, scrolling images started an episode. This is such a strange illness.

    I will keep you posted, and thank you so much for your response and for your blog. It is so valuable for all of us.

    Yes, I love your name and nearly named one daughter Jessica Johanna but she is Jessica Ruth Ann after two grandmothers. I’m hoping another daughter will use Johanna . . . .

    My very best to you . . . Pamela

  29. Jeff

    Great post. September 5th I had my first attack, went to ER diagnosed with BVVP. 1 month later, no spinning attacks just a fog over me, it’s gotten alot better but still is a nuisance. My ENT doesn’t believe it’s bvvp since I still have this residual fog over my head, no pains, no spins , not dizzy. It does not help with my stress and anxiety :) And you’re right, do not Google your symptoms or such, it’ll only freak you out! Anyone else have the residual feeling? Btw, 37 year old male, and yes I drink too much coffee and coke, looks like I need to quit or cut back and see what happens. Thanks again for the great information! Jeff

    1. johanna Post author

      Jeff, I was playing with site infrastructure last week and I fear I lost my reply to you. Sorry.

      Good luck with figuring out what works for your vertigo. I do find that low carb (reduce all insulin spikes) and very little caffeine works for me. I wish you the best with your discoveries for what works for you.

  30. sandy

    I have had this vertigo nightmare over 4 years now and it seems like an eternity , I too am a “medical mystery ” It started out of the blue while shopping and never left , it varies between dizziness and off balance EVERY day , vertigo attacks vary from severe to mild and migraine headaches everyday . Was initially diagnosed as meniers but with no hearing loss they say migraines , I am currently getting botox but hasn’t really helped , the only thing that calms the dizziness is valium. Wish I could see light at the tunnel of this horrible illness .

    1. johanna Post author

      Sandy, I am on a (low dose) muscle relaxant, baclofen. Here is my theory: the baclofen relaxes my eye muscles, which calms my oscillopsia. (At one time, I thought my middle ear muscles might be spasming, but I no longer think that.) My docs do not know why this appears to work for me. (I see several different neurologists. What a life!) One of my neuros, a guy who specialized in tinnitus, prescribed valium for me, but I never took it. I was already too tired all the time.

      Consider seeing an otoneurologist, or a neuromuscular neurologist. Because you a medical mystery, you may have to experiment to find the right doc. Oh, you might need to go to a good educational institution to find the right docs. Good luck.

  31. Pillai

    Amazing article! I am going through my second bout of dizziness and vertigo. First one was in March and it lasted till July. I had light sensitivity, tension headaches and severe nausea during the initial days. First diagnosis was BPPV and the last ENT said it is vestibular migraine. I saw three ENTs and the last one was the one to recommend neck physiotherapy and it helped
    immensely. Because for me, the epley would cure the vertigo and in 2 days it would come back. He also told me to watch the triggers and I followed that. From July till now, I did not even have a single episode. So there is hope :) My second bout started just today after I had my first cup of strong coffee after 4 months. I thought I was going to faint. So people with these symptoms, just eliminate coffee. I enjoy two cups of black tea daily and I never feel dizzy.

    1. johanna Post author

      HI Pillai, I don’t know anything about vestibular migraines. Maybe someone else here does? I’m glad you found neck physiotherapy and that it has helped.

      Wow, just one cup of coffee. Well, good to know and I hope you are feeling better now. I just found this page on the vestibular disorders site, about a vestibular diet. I used trial and error :-)

      I just discovered this caffeine comparison database. When we brew coffee in our homes, the caffeine is about 160 mg/8 oz cup. The caffeine content has a large range, so take a look at the table and see where you are. In contrast, black tea has about 40 mg/8 oz cup. Green tea (my tea of choice) is about 25 mg. What a difference.

      Thanks for prompting me to look this up…

      1. Pillai

        Thank you for the detailed reply Johanna. Yes I am better now, just have some head pressure from the attack.
        Whoa what a difference indeed. I decided not to drink coffee ever in my life :(

          1. Pillai

            I keep coming back to this post when I get dizzy. Now someone brought homemade chocolate at work and I had a piece. And it made me dizzy:(

          2. johanna Post author

            Pillai, I’m delighted you return, although I’m not delighted you are dizzy. I have found two problems with chocolate: the caffeine and the sugar. I eat sugar-free (dark) chocolate. I still eat chocolate. I don’t think I can stay off it permanently. However, I eat sugar-free because otherwise I get dizzy. I use Lily’s (sweetened with Stevia) and Ross Chocolates. For the Ross, I eat the milk chocolate regular or mint. Those are normal links, no affiliate links.

  32. Carmel Baird

    I am very grateful I found this post this morning. Yesterday was my first major vertigo attack of 2017. I have had vertigo off and on throughout my life since my early 20’s. I’m 44 now. The vertigo I had in my 20’s feels much different though then what’s been happening since spring of 2015.
    March 2015 I was putting my Mom into palliative care. I was learning over her bed and filling out the T.V card when it felt like my brain spun so fast inside my head I couldn’t focus or see anything and I slid to the ground beside her bed. It’s not like passing out, it’s like you can’t catch up to the sprinning of your brain. The duration of the attack lasted about 5-8 seconds and then I just sat on the ground and got my barings. My husband got me a wheelchair. Shortly after the attack a migraine set in. (I’d been having migraines worse the previous year before but no vertigo with them)

    Because I’d had vertigo before I told my husband that I had just had a “small vertigo attack” but that I’d be fine. (even though this felt nothing like the vertigo I had experienced before) Yes it was different then normal and scared the heck out of me..but I assumed that’s all it was and had gone away. Three days later while teaching a class I had another one. I remember I was looking down at a paper and it came on. Everything went black because my eyes can’t keep up with their focus and I began to spin like crazy.
    I slid down to the floor trying to grip onto anything I could. The whole episode lasted for about 5-10 seconds. I gave myself sometime to get my wits about me and then had my daughter escort me out of the class and back home. (embarrassed and feeling defeated) I had known vertigo before but not like this.
    Before the vertigo would be there when I woke up. It would happen when I would sit in a chair and feel off balance or like the world was on a tilt. I get vertigo around my time of the month, but I’m so use to it now that I just adapt and manage and I would know this week isn’t the time to go to restaurant or visit friends. I have minor vertigo/balance issues that I guess I’ve just learned to live with.

    These two attacks where worse, different. I paid myself and got my own MRI and then went to my GP doctor who passed me onto a neurologist. When I went to see him he said my scans where normal but showed I had aura migraines. He said this is what caused those vertigo attacks and prescribed me Topomax. I don’t know if you’d read the side effects from this drug, but I felt my vertigo sounded better this what the drug was offering. The drug also takes 30 days to get into your system and 30 days to get out! What if I couldn’t work!? (I own my own business and see clients regularly) I felt defeated and at my wits end.

    I decided I would begin to exercise and eat better. I began bio-identical hormone therapy which helped with other things but not much for vertigo.I lived that year 2015 with a lot of migraines and balance issues, but those major attacks never came back…until May 2016. I had grown accustom to going to the malls in a wheelchair. Always fearful of another attack this was my way of getting out to do things with my older girls and they had fun pushing me and I always felt safer in case something happened. Well it did.
    I was in a store in my wheel chair (Thank god) and was looking down at a shirt when I looked up and the attack began. Everything started to spin around and I had nothing I could do but hold onto the chair as tight as I could. My daughter said my eyes where rolling all over the place ( I couldn’t focus on anything and as best I can describe it I felt like my brain was spinning a mile a minute inside my head) I had a migraine before I went into the mall and all I could think of was ..here we go again.
    They wheeled me out to the car. Me hanging onto the chair for dear life. I couldn’t move my eyes or my head without feeling vertigo and I had no depth perception. None. I couldn’t reach out in front of me and know where the ground was or were my foot would land.
    They got me into the car and we headed to the hospital. When we got there they said ” oh vertigo ..yup it’ll be awhile. Find a seat over there.” To sit up straight in the chair was the most uncomfortable thing. All I wanted to do was lay down on the ground but looking at the hospital floor didn’t seem to be the safest either.
    I asked my friend to take me back to our lake lot where we had been staying and didn’t see a doctor. I rested in bed for a few days and the vertigo slowly got better. Another attack I thought and dreaded the possibility of another one.

    In October 2016 I heard that food with lectins can make vertigo worse. I stopped eating peppers, potatoes and tomatoes. Honestly it made a big difference. The vertigo seemed to leave. I had some other stomach problems, tired, etc…but no vertigo. I kept saying that to my husband. I may have a migraine ..but I don’t have any vertigo! Thats the most important thing!
    Until…yesterday that is.
    I just got over a stomach flu I’d had all weekend. On Monday my husband and I where out dropping off a horse and I’d barley eating anything in 3 days. Keep in mind since my vertigo attack in May ..I stopped eating gluten and dairy and lectins so my diet was already limited.

    I stopped and got a chicken pho soup. I’d never eaten there before. The women who worked there swore it was gluten free. I didn’t think about the MSG at the time or sodium. When I got home the soup tasted amazing! Although it did taste really salty to me.I said that to my husband. I just can’t get the taste of salt out of my mouth. Within about an hour I noticed I was feeling some vertigo/balance issues. You know the day to day stuff I’d be feeling before. I just thought hmmmm I must be getting my time of the month soon.

    The next morning I woke up feeling pretty good. No vertigo. No migraine. No stomach problems. Hey ..I may put on makeup today I thought.
    I sat down to answer some emails and do some work and suddenly ..the spinning vertigo attack that I dread came on! It lasted 11 seconds and I know that cause I happened to be recording something at that time and got it recorded this time.
    I hold onto my desk and my chair and just try and get through the spinning. I can’t focus on anything or see anything and at first I try and grasp what is happening to me ..and then I realize ..oh it’s one of these! I do everything I can not to panic but I am panicking. It’s the WORST feeling in the world!

    In about 11 seconds I manage to stop thing I was recording and get my wits back, but I can’t move my eyes or my head. All I can do is sit completely still. I manage to text my daughter off the computer to go and get my husband. He comes and sits with me. Asks me what should we do. I can’t move my head at all and have no idea how I can walk. I wait about 15mins and decide lets go to the hospital. He helps me up and off we go. By the time I get there I am starting to feel less vertigo but it’s still there if I turn my head to much. (Today my head feels very heavy and off balance is the best word I can describe it)

    He wheels me in ..same response from the nurse in intake as the May before. Vertigo ..oh ya go sit there, it’ll be awhile. Sitting in the wheelchair amongst dozens of people is maddening. I can’t move my head, the lights, the noise all makes it worse. I wait for about 10-15mins and say ..I am not dying. Take me home. My poor husband takes me home. On the way I book an appointment to see my doctor today and after reading all your comments I’m going to ask to see an ENT doctor and the neurologist again. I don’t want to take Topamax, but I don’t want to live like this either.
    I don’t drive. I don’t go out into public. My business is suffering from cancelled clients and I feel like I had no quality of life as I’m living in fear 24/7.

    Was it the salt/MSG in the pho soup?
    These big attacks happen in the spring or fall. Was in the weather. Last week it was minus 20 and yesterday it was plus 6?
    Does anyone else get migraines after or before their vertigo?
    Do I have aura migraines or is this something else?
    Will they ever stop?
    Is there not some natural way to cure this?

    Thank you for taking the time to read all this. It help to not feel so alone.

    C.B

    1. johanna Post author

      Hi C.B, well, you certainly have a ton of stuff going on. Topomax is for seizures and calming the brain reactions. I am not a neurologist, so I have no idea if it would work for you. I did take topomax for 3+ years. It was better than my oscillopsia. I now take baclofen, a muscle relaxant. For me, that calms my eye muscles. I don’t know if it’s a cause or effect, but calming my eye muscles appears to manage my vertigo.

      I know of the Epley maneuver and the other possible maneuvers to manage the crystals in your inner ear. I don’t know of other “natural” approaches, because I am not sure your vertigo is BPPV, which does respond to repositioning.

      If I were you, I would find an ENT or a neurologist who specializes in vestibular disorders. You have some sort of vestibular problem. I would want a diagnosis. If you know what causes your vertigo, you can decide what is a better medication approach, aside from diet.

      Some other people have taken Clonazepam and that works for their dizziness. It really depends on whether you have a vestibular problem (alone) or a neurological problem (something is haywire in your brain), or a combination of both. I don’t see how a GP or an ER doc can understand that. In fact, they don’t understand. I strongly recommend you see a neuro, or an otoneurologist or some sort of vestibular specialist.

      You are not alone. We are all here with you…

    2. Pillai

      Hi, Hope you are fine. Everything feels so familiar. I have had only mild episodes. But I had problems at super market, triggers from caffeine, chocolate, msg, lack of sleep etc . I had to see three ENTs before I got a definitive diagnosis. The first two ENTs just sent me home saying that it would go away. I missed weeks of work. You should definitely see a Otolaryngologist ENT. There are ENTs specializing in dizziness. The violent episodes are usually BPPV especially since your eyes show nystagmus. If you see a ENT get a prescription to see a good vestibular physiotherapist. I am in my 30s but I have been in a similar condition for 4 months with constant vertigo, brain fog, head tightness, nausea and lack of appetite. I was not able to sleep on my right side for about 6 months. Exercise is a bug factor and watching your triggers. The last ENT I saw was from Cleaveland Clinic, he diagnosed me with vestibular migraine. You are not alone and this thing can be cured. Good luck!

  33. dee parks

    Hi… I found your post while perusing the net for some answers about this darn vertigo. Thanks for sharing your story.

    I’ve had vertigo for 35 days now..can’t work, cook, shower, drive..nothing. I woke up at 2am one night vomiting and my eyes were moving from side to side very quickly. Had to call 911 and be transported via ambulance to the hospital. They gave me Valium and mezicline (sp). The Valium calmed my eyes down enough for me to see but the dizziness was still there and my eyes were moving nonstop…I could barely focus on anything.

    Fast forward to today. I have seen 9 doctors total. General Dr’s in emergency rooms which I’ve been to several times now, my primary Dr, ENT, Neurologist, chiropractor and opthalmologist. Every single doctor has told me that they cannot help me. Can’t figure out what’s wrong with me.

    My main symptom is my eyes are constantly moving. After researching, I am realizing that this is probably nystagmus that hasn’t stopped. It isn’t as bad as the first day but still… The vestibular rehab therapist says my eyes are moving rapidly to my left, which is why everything is shaky to me.

    WILL THIS EVER END??? Im so scared. These doctors send me home, saying it has to leave on its own. Yet it hasn’t gotten any better. I’ve been on all the meds…nothing works. Mezcline, Valium, prednisone, antibiotics, Dramamine, etc etc I have 12 different meds I’ve taken and none work. I haven’t had relief one day. They can’t tell me why this happened…the ENT said she didn’t see fluid on my ear so she doesn’t think its that. Meanwhile she originally said she couldn’t TELL if I had fluid on my ear because the ear canal is so small…so how the heck she could tell I didn’t have fluid after 2 weeks of seeing her is being me. And yes I’ve had an MRI, cat scan, balance and hearing tests…everything :-( and all were clear.

    I’m just very scared, stressed, defeated.

    1. johanna Post author

      Dee, you need to see a vestibular doc to manage the nystagmus. (They might be saccades, I don’t know enough.) A regular ENT is insufficient. Most neurologists don’t know about vestibular function. You need an otoneurologist or some sort of vestibular ENT. Even an ENT who deals with Meniere’s is probably not knowledgeable enough for you.

      Meclizine is the medication of first resort. One of my docs gave me a script for clonazepam. I didn’t fill it, so I don’t know if it will work.

      You need to get those spasms under control. I take baclofen, which is a muscle relaxant. It manages my spasms, including the ones in my eyes. You will need a neuro to prescribe it for you. The ENTs have no clue about baclofen. (Even the neuros might not realize this is what is going on.)

      One of my neurologists told me I would adjust after 6 weeks—the brain accommodates what your eyes see. That was not my experience. I would ask whomever gave you a script for vestibular rehab to refer you to an otoneurologist. You need highly specialized care (and information). If you live near a major medical teaching hospital, see if you can find someone there, with the help of your neurologist. I had to ask my neuro for a referral to Mass Eye and Ear, and Brigham and Women’s and MGH. I finally found answers at MGH. Good luck.

  34. Ck from LA

    None of you are talking about allergies or neck problems/injuries being related to Vertigo.. I live in Southern California and we have a huge problem, yes the weather is beautiful, but the downside is, the quick change in the weather, causes havoc for many of us re our allergies. Every time the Santa Ana winds start to blow, my allergies kick up and I get bad headaches/migraines and allergies, compounded with neck injuries and degenerative neck problems, it’s a nightmare.

    I did not for see this a few years back. I’ve always been active to say the least, a former Pilates instructor. I’ve worked out all my adult life and lived a healthy life style.Then a car accident exasperated some degenerative neck issues and I’ve always had allergies. In the last month I was diagnosed with Fibromiaglia.

    I have had two bad vertigo episodes. One a little over a year ago and one yesterday! The first time I didn’t know what was happening to me and I seriously thought I was having a heart attack or stroke. Nope, it was vertigo. It lasted a month or so with a trip to the ER an MRI of my, brain a lot of meds- Phenergin shot, Benydrl shot, Antivert, Benydrl, Singular, Claritan, nasal sprays and I continued the allergy and nasal sprays for months.

    It finally went away. I really thought it wouldn’t return and then yesterday during Physical Therapy for my back and neck it did. For about a week I had been feeling a little dizzy and I just thought it was because I forgot to take my Thyroid meds a couple days. Then during some various moves I started to spin. It was the therapist who suspected it was Vertigo. Maybe my eyes were fluttering.
    They sure did when she did the manuuver. Now Saturday and after a lot of the above meds and a good nights sleep.. I still feel wiped. Eyes tired, unsteady and sick to my stomach. I’m so afraid its going to return. Any thoughts?

    CK from LA

    1. johanna Post author

      Hi CK, It sounds as if you had nystagmus or saccades. ER docs might recognize nystagmus or saccades, but they don’t know what causes them. I have had times when moving my head in a certain way caused saccades. I don’t know why, and neither did my docs.

      I can’t tell you if your vertigo will return. Here is what I do know: if you don’t see a vestibular doc, you won’t know either. Vestibular neurologists or otoneurologists are the only docs who can tell you what’s going on. It’s possible a vestibular ENT will know something, but I don’t think so.

      Clearing your nasal passages puts less pressure on your inner ear, which is why the docs suggest that. If you have allergies, you are likely to be inflamed and that puts pressure on your inner ear. I take Zyrtec and flonase during allergy season. (I’m in Boston, so we get fewer months of allergies.) I take several days to recover from a vertigo attack. I don’t know how long it takes other people.

      My suggestion: find a vestibular doc in LA, preferably in a teaching hospital. I suspect you’ll have to go through several layers of either regular ENTs or neurologists to get into see a vestibular neuro of some sort. There are something like 40 otoneurologists in the US. I think there are slightly more vestibular neurologists. I discovered a lot when I went in for vestibular testing, especially about ways I could manage my vertigo. Best wishes.

    2. Ck from LA

      Thank you so much. I saw my neuro surgeon on Thursday on an unrelated issue, my spinal stenosis, which is in my neck area. He ordered a brain MRI. I had one a year ago and it was fine. I really believe it is allergy/ sinus related and the MRI is not needed, but he doesn’t listen.

      It’s been a week now and my inner ear is hurting at this moment. I feel a bit nauseous and unsteady, but the bad Vertigo has not returned. My young PT also suffers from Vertigo and has seen someone, an ENT. I’ll start searching for the type you suggest. I’m off the benydryl and antivert- she said it make it worse. Still taking claritan, singular and using flonase. I weather flip flops so much it sometimes catches me by surprise that I need to be on it.

      Again many thanks.

      CK

      ps. a family member is an ENT at USC specializing in something else, he may know someone as well. I always forget about him. Brain fog so much worse this time!

      1. johanna Post author

        I always figure a head MRI can’t hurt. It just takes time. I often sleep through them. (I know, loud and I still sleep!) Sounds like you are making progress. Good luck.

  35. Meg

    Hey everyone,

    Johanna, I’m glad I found your article. It was just what I needed to eliminate caffeine again once and for all.

    I am writing this in case it helps someone out there. 24 years old, female, and have had chronic, debilitating vertigo for about 5 years (although I used to get nausea and visual distortions most of my life since about age 9 or so?).. I’m glad you keep reiterating the fact that maintaining your vertigo symptoms means different things for different people.. especially when our diagnosis’ may be unclear. I have seen numerous ENTs, vestibular physio therapists, eye doctors, neurologists, etc., and MRI and ENG tests come back normal. My diagnosis seems to be migraine (brain stem type aura migraine, or basilar migraine, to be exact). The symptoms may also be made worse by a few mild concussions (brain trauma) over the years? “Binocular occlusion” (literally tape on the inside of my glasses, which block out some of the visual “information”) helps my balance tremendously.. I think this is an indicator of head trauma? I could be wrong. Either way, without the occlusion, I can’t walk or stand for long without triggering a vertigo attack. I’ve also had huuge pupils for as long as I can remember. (I have 20/20 vision by the way). I am on a few medications including Propranalol, amitriptyline, and Zoloft. If I miss a dose of either, a vertigo attack will definitely follow. I’ve never had a problem with seasonal allergies or sinus issues. There are, however, inner ear issues/balance issues in my family, either undiagnosed or diagnosed as Ménière’s disease. I have been told I do not have Meniere’s.

    I’m getting an optical nerve ultrasound today from a new eye doctor, and she is going to let me know about “prism glasses”.. has anyone heard of these? I’ve slowly started to get back into a cup of coffee again daily, and my vertigo and other symptoms have definitely worsened (worse balance, tinnitus/hearing distortion, visual distortions/rotations/tremors upon awakening). Oh I also want to mention that I am not allergic to soy, but basically every single time I eat something with soy ingredients (watch out for those “natural ingredients”, too!), I get violent vertigo, lose my balance, and wake up with tremours.

    I would love to hear any feedback for my sake, as well as hopefully my post has helped someone out there.

    Meg

    1. johanna Post author

      Meg, wow, what a journey you have. I have been stable for a couple of years now that I am on baclofen, a muscle relaxant. My new theory, *for me*, is that my eye muscles spasmed. That was one cause of my vertigo attacks. The fact that you are trying the different glasses and are working on visual stimuli says to me that our eyes are definitely involved.

      It’s good that you know about caffeine and soy. You and I don’t have to be happy about our diet restrictions, but knowing makes all the difference. Good luck, and I’m glad you don’t have Meniere’s.

  36. Meg

    OH also, if there’s a sudden change in the weather, especially a grey and humid day, I’m often bed-ridden. Vertigo is some fun stuff lol..

    1. johanna Post author

      I’m more stable with meteorological mercury lows now. I used to get dizzy. Now, I’m much less subject to the weather.

  37. Ck from LA

    Oh my gosh. I started spinning during the MRI last Thursday and when I sat up at the end of it I had a full blown Vertigo attack. I did the Epley Maneuver as best as I could, I think the tech though I was nuts. The nausea was bad afterwards and the next morning my Vertigo was the worst it’s been in three weeks since this second episode and the nausea too. Not sure why. Added Benadryl back add bedtime, seems to be helping a bit, drinking Ginger tea too. This sucks. Haven’t driven since Wednesday. I basically live alone. Adult children in and out…

    It gets very scary, lonely, depressing….

    1. johanna Post author

      CK, that’s terrible. I hope you are seeing an otoneurologist or a vestibular neurologist. Do you need to see someone about your eyes for the nystagmus/saccades? I wonder if those of us who have undiagnosed/undiagnosable vertigo have problems that start with rapid eye movements. Those movements don’t help and certainly exacerbate vertigo. (It’s the vestibular ocular reflex at risk.) I’m not a doc, so I don’t know. That’s today’s supposition. Good luck.

  38. Jane Sherwin

    Here’s my story re Meniere’s management: I was first diagnosed in about 2004, symptoms very occasional, gradually more frequent so that i really need to find ways to manage. Love what the Mass Eye and Ear Infirmary says on their website: Meniere’s is a case of unsettled inner ear, and the way to manage your inner ear is to pamper it. So, after a couple of weeks of a bad cold and unpleasant vertigo, i’m doing these things: low salt diet, low caffeine and alcohol as much as temptation will permit (especially no Chinese takeout food!); manage mild to moderate anxiety with breathing meditation and with aerobic exercise; drink plenty of water, stay healthy in both body and mind; use Ativan, not Meclizine, if episode occurs (Mec. more for nausea according to the physician); and acupuncture. The physician said she would not use acupuncture for herself since there is no evidence for its value, but that she is a very facts-based person, whereas i might be more comfortable with the uncertainty. Since i love acupuncture, i’m happy to give it a run. So far, i’m pretty sure it’s the low salt diet that makes the biggest difference.

    1. johanna Post author

      Jane, I love that. Low salt and low caffeine make a huge difference for me too. Interesting that Ativan works for you. I have not tried it. Good for you for trying acupuncture. Best wishes to you.

  39. April B

    Hi Johanna, I had a very severe vertigo episode this past March when I was in a yoga class doing an inverted pose- maybe it was standing split or 3-legged dog. I’m in my mid-40s, and had a very mild episode of vertigo about 10 years ago when I was at work and got up quickly from my chair to run after someone. Back then this lasted only a few seconds of feeling off balance and needed to hold onto the wall. I had my period at that time.

    Fast forward to about two months ago, March 2017- I went to an early morning yoga class and didn’t have any breakfast first, had my period and felt exhausted. It was a stressful time with family issues in the days before this happened. I was regularly practicing yoga about 3 times a week for almost two years. So when I came up from the inverted pose, the room was spinning really badly. I needed to hold onto the wall and sat upright on the floor for about 30 minutes for the rest of the class. My teacher got me some coconut water and a scone. The scone probably set off the nausea from the dairy- butter. Then someone offered a table for me to lie down and that was a mistake. After I did that I quickly became very nauseous and after sitting upright the spinning resumed and I vomited right there at the studio. It’s a long story. I got a ride home and the vertigo continued with me vomiting off and on and feeling off balance. Went to the emergency room the next day. The doctor did the Epley maneuver. This helped somewhat and gave me meclizine. That medicine made me feel so out of it! Went to work for the week and saw an ENT about four days after my ER visit. He showed me the Dix-Hallpike. Then I found the Foster Half-Somersault maneuver on YouTube. This was very helpful since I could do it alone.

    I had some mild spinning in bed about a month ago after waking up and turning my head towards the affected side. Lately I’m sleeping with 2 pillows and might get a wedge. I’m basically feeling okay. I’m afraid to go back to yoga now. It’s sad since this was something that I loved and gave me a sense of relaxation.

    From the comments, I think I will give up caffeine. However, I only drink one cup of black tea, either earl grey or Irish breakfast, in the morning. I do love a little dark chocolate everyday. Don’t really want to give this up. I am wondering why this even happened to me. ENT confirmed it was BPPV. I’m afraid to do yoga again because this is where this happened and maybe it would trigger another episode.

    Thanks for your blog and tips.

    1. johanna Post author

      HI April, well, it seems as if you have seen the right people, which is great. Too many people don’t get enough vestibular help. And, it’s great that you found maneuvers that work for you. I find it so strange that One Size Does NOT Fit All :-). As for no yoga, I wonder if you could do enough yoga positions that keep your ear “up” in some sense. BPPV is about the crystals. We need to keep them in our ears, not out. If you can keep the crystals where they belong, you don’t get the whirlies and you don’t vomit.

      Once it’s been a few months without spinning in bed, I might experiment, assuming I was well-hydrated and not too sugared or caffeinated. Both of those appear to be triggers (for me) for a vertigo attack. Maybe for you, it’s just the sufficient hydration? I wish I knew. Good luck to you.

  40. Marie

    Thank you so much for this forum.

    I was diagnosed with an inner ear imbalance since the 1990s.

    I was wondering if anyone has a suggestion for me. I have been lightheaded since January of this year. Walking is difficult at times. When I sit, stand or lie down, I’m fine. My problem is the walking.

    Also, I’m able to drive without a problem because I’m in a sitting position.
    However, when I stop for a red light or stop behind a car because of gridlock, I feel my head is a bit ‘spacey’. As long as I’m driving I have no problem. But, it’s when I stop for a short period, is when I get a bit anxious and feel a slight reeling. Then, when I start moving again, I’m fine.

    I don’t know if anyone has this problem. It’s just a weird thing.

    I just purchased something called ‘Vertigo X’ on Amazon. Someone told me that it’s really helpful for stopping the feeling of imbalance when walking. I haven’t tried it yet. I pray that it will help.

    I read that a lot of you have given up caffeine. I don’t drink a lot of coffee, but I do have to have a gulp or two every morning. Maybe I need to give that up and see if my balance improved.

    I remember years ago, my ENT specialist told me that i should not drink too much water. However, I’m reading that everyone is saying that we need to drink lots of water.

    I DON”T KNOW WHAT TO DO!! HELP!

    1. johanna Post author

      Marie, I’m not sure what “too much water” means! I would check to make sure your ENT specializes in dizziness/imbalance problems. If your ENT is a normal ENT, that doc does not have enough information to help you. Since it’s been since the 90s, I hope you have seen an otoneurologist. (I find I am better when I drink more water. If I get close to dehydrated, I get much dizzier. As with all vertigo issues, YMMV.)

      Walking requires some kind of vestibular capability. I use a rollator now (used to use a cane) all the time, except when I’m cooking or walking short distances. I don’t have enough balance to walk unassisted. (Well, I can, but I fall over.)

      I wonder if the stopping is your inner ear fluid washing forward/back. Or, I wonder if it’s about the horizon. That sometimes happens to me, but not very often. I do find that when my husband drives and he jerks the car to a stop or does a jackrabbit start from a light, I feel dizzy.

      If you don’t have a diagnosis, I urge you to find someone who can help you. I would at least get a 2nd opinion re the causes of your dizziness from an ENT who focuses on vestibular problems.

  41. Greta Earthly

    I just got out if the hospital with vertigo. It was a real bad case. I was at work when it occurred.bi feel real bad still. It’s not going away too quick. I can’t afford to miss work any more days. But I’m taking my meds and praying. Hope everyone that has this illness I wish them the best. My name is Greta

    1. johanna Post author

      Greta, I do hope you saw an ENT or an otoneurologist who specializes in vestibular issues. *My* experience is that getting a diagnosis is key. I have oscillopsia which means I need to calm down my eyes, so I don’t get saccades. I use baclofen, a muscle relaxant. That is not what you use for BPPV. Please do get a diagnosis.

  42. Lupe Evans

    Thank you for sharing. I have Mennier’s and I am now having to accept that I am losing my hearING aside from dealing with all of these other annoying symptoms. I take your suggestions to heart and hope that you will remain strong and well!

    1. johanna Post author

      Lupe, I’m sorry you have Meniere’s. I don’t have it, so I don’t know enough about it to comment. My best wishes to you.

  43. Kristin

    After reading this full thread, I too feel compelled to provide my story (which I am still trying to figure out!). I believe I have always had some sort of vertigo and can remember getting off a roller coaster in high school and being completely off balance and dizzy. I knew not to get on those kind of rides again (with loops and spins) avoided those so I managed just fine in life with no major issues.

    Fast forward to 47 years old. Earlier this year I had a significant dizzy spell getting out of bed. So much so, that I asked my husband not leave for work until after I finished my shower. I had to prop myself up by the shower wall and hoped I did not pass out. Pushed through this, finished getting ready, getting the kids ready for school and went to work.

    In May had another significant dizzy spell when getting up from my desk to quickly to meet a co-worker. Thought my brain hit the side of my head and could not find my balance. A week or so later developed a migraine. Hurt to keep my eyes open, light/sound sensitive, and Tylenol/Motrin only worked so much. I never (yes, never) had migraines before. I had heard about them so I knew this was more than a headache. Went to see my GM who suggested a CT Scan and prescribed me Butalbital (which is brutal) and referred me to a Neurologist. CT Scan was Normal.

    In early June at Neurologist apt he recommended an MRI as apparently CT Scans are not that accurate and put me on a steroid. Headaches went away after 5 days on the steroid.

    In late June and before MRI, had another severe dizzy spell and was in bed all day Saturday and part of Sunday until I had to get on a Sunday flight for work. Called Neurologist as I was concerned about my dizziness and needed to get it under control before I got on a plane. He prescribed another series of Steroid and Meclizine. I ended up not taking the meclizine as I was concerned about trying something new and getting on a plane. So I again pushed through with the 2nd Steroid series and Tylenol. All got better again.

    Late July went to a 2nd Neurologist who also recommended an MRI but was concerned as dizzy was before migraine and that I did not have a history of migraines and the two never happened at the same time. Had the MRI one week later, results the following week and a call from the N saying it was most likely Benign Multiple Sclerous as I had white spots on my brain. He requested I schedule another apt in a few months since I was not showing any major symptoms of MS.

    Obviously researched and discovered that many MS patient symptoms were not like mine. What about the ringing in my ears, dizziness, etc. Found a Dizziness and Balance Clinic with a N who has a certification in Vascular Neurology in my area and is affiliated with a teaching hospital. My GM sent over the CT and MRI results and physician referral in late August. Getting the apt has not been easy, but hoping to hear back from them next week.

    Since then have had a 3rd episode of dizziness on this holiday weekend (not able to walk or get out of the tub) and in bed all day yesterday and feeling pretty off today.

    Never really liked Cokes, coffee, sweets etc. so Caffeine has not been an issue for me. However, in the past 2 years I started having 1 cup of green tea every morning. My diet is pretty good, low blood pressure, healthy weight, but exercising is almost non-existent due to my schedule.

    These episodes can’t happen to me! I have three kids, a full time job, and mother I just moved into a nursing home. Now I feel like I am complaining – so sorry. Will try to keep this thread updated and thank you to all for your previous posts – super helpful.

    1. johanna Post author

      Hi Kristin, wow. I do hope that the neuro who specializes in dizziness and balance can help. I don’t know anything about vascular neurology. (Never heard of that before!) I’m not surprised that if you have had 3 episodes of dizziness you are still feeling off! I drink green tea, which does not have a lot of caffeine. I wish I could be more helpful. Maybe someone in this community has an idea. Good luck to you. If you desire, please do reply and let us know what happens with your new neuro appt.

    2. Lupe

      Kristin, my heart goes out to you. Your symptoms are so similar to mine. I am on Tecfidera for MS and I have Menniere’s disease so I am on Meclizine for that and Niacin has also proved helpful. It had been 12 years since the last time I had Menniere’s attack of Vertigo and nausea but it’s back. I hope you are doing well and hanging in there.

    3. Melanie

      Hi Kristin
      Sorry to hear of all this happening to you. I wanted to thank you for sharing and ask if you would please follow up after seeing this new doc.
      I’ve been having memory problems for quite a while, then had some urological issues, and this is my second bout of vertigo in about 1.5 years or so. Mri showed two lesions, one at front right, one on the cerebellum. I’m waiting to see a neurologist who is preemptively sending me for a more in depth mri and an angio of head and neck. I suspect ms.
      Much love to you going through this. Keep your chin up.
      This is an excellent thread (sorry, have forgotten your name). Thank you for posting/moderating/maintaining.

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