Vertigo, My Newest Companion

Vertigo, My Newest Companion

Okay…so, companion is not the best characterization. I should say Vertigo, my new nauseating, clingy associate. Yes…that sounds a bit more true. I am sad to say that, unfortunately, I’ve recently developed experiences of vertigo with migraine, and in this article I am going to discuss my first, intense experience with it.

Unpredictability of migraine

As many of us know, migraine can be really unpredictable and confusing. While each individual migraine sufferer knows that certain situations, environments, instances, and objects can act as triggers, we oftentimes struggle to pinpoint exactly what those triggers are and can devote a lot of time just trying to find out what might trigger a migraine in order to avoid casually running into or inviting those things into our daily lives.

Same for symptoms: many of us spend a lot of time honing in on and defining our symptoms in an effort to find some relief. Some folks try elimination diets to narrow down their food triggers, others experiment with dampening and filtering out light to help with their light sensitivities with glasses such as Theraspecs. With triggers, symptoms, and relief methodology varying from one migraine sufferer to the next, there seem to be endless approaches to manage experiences of migraine.

The power of sharing

Variation is why communities like the ones at Migraine.com are so invaluable. The structure of sites like Migraine.com allow community members to explore all of those different triggers– coffee, headlights, loud construction, the off-smell coming from the office kitchen– and a lot of those symptoms–nausea, vertigo, slurring, weakness, forgetfulness–together. These spaces also allow many migraine sufferers to see what others are doing to tackle those triggers, and to see what has worked and not worked for others.

While each individual is different, we also tend to see similarities, too, among many patients. For example, many community members here at Migraine.com gave feedback in the comments to an article about eating while migraining, and reported that a good ol’ Coke and Saltine crackers helped them out after or during a particularly nauseating migraine. It is always super interesting to see what many people who are dealing with similar pain are doing similarly, as well as what is different with this unpredictable disease.

Learning more about myself through community

It was actually on Migraine.com that I learned more about, and got a better glimpse into the experience of vertigo for migraineurs. Up until very recently, vertigo was a symptom that I knew to be likely for migraineurs, at about 30 percent of folks having them,  and I had read about many experiences with it from others in the community. I always wondered whether it would happen to me. As a chronic migraine sufferer, I tend to anticipate symptoms and triggers that may happen, even if they’ve never happened before, because I know that migraine can change its mind and habits out of nowhere…and that is exactly what happened. After many years of chronic migraine with relative consistency—BAM, a big, jarring experience of vertigo hit me like a truck.

From 0-100 in 60 seconds…literally

I was watching The Great British Bake-Off with my caretaker, on a relatively relaxed and sunny day. Not much was happening in the way of anything at all. I didn’t feel stressed, I didn’t feel as though my eyes were overexerted, and I actually had migraine relief enough to watch television without feeling strain. I felt almost…average I suppose, it was all around a low-pain day. When suddenly, it felt like a twenty foot wave was pushing me backwards and the room began spinning rapidly though I was completely still. Then… nausea like none I’d ever experienced followed. I mean, like a case of the spins to rule them all. I was floored.

Knowing, but still fearful

Even though I’d read numerous accounts from migraineurs with vertigo, and even though I knew I should expect to feel just awful, when it actually hit me I felt full of fear. This new terrifying experience halted me, and I lost days to it. I couldn’t sit up for hours, and when I finally did, I fell back down. I tried to stand and fell down. I couldn’t get to the doctor for an entire day, because I couldn’t’ make it to my car. My caretaker and I managed to finally get to my car and I couldn’t make it out of the driveway, we had to go back in the house and wait some more…and that took forever. I wasn’t able to drive for days. Making it to the restroom was an ordeal. It was a lot like what I’d read the experience could be like…but experiencing it was like a painful, awful light bulb.

Per usual, shooting into the dark

During my first really intense vertigo attack, it was really all up to my caretaker, as I was in no condition to find out more about what was going on, especially in the first few hours. This was a pretty intense case of vertigo, and one that both of us had to navigate a bit blindly. When we finally made it to the doctor days later, they kind of rolled their eyes at us it seemed, saying it wasn’t too serious, telling me it was a tear in my ear when it wasn’t, giving me some weak nausea medicine after I ‘passed’ a sobriety test (of course)—and I thought well you should have seen it.

It seemed as though the real help, once again, would come from the community. Once I was well enough, I dug into the questions and articles from patients and migraine sufferers to compare my experience to others, and I found and confirmed that a lot of what I experienced and felt had been experienced and felt by other migraineurs–a relief because I knew I could now reach out to folks about what happened and what might help me avoid losing days again.

A new and unusual typical ordinary migraine

Most of us know well that migraine can just totally change on us one day, and our migraine can go from episodic to chronic or vice versa, we can get symptoms we haven’t had in ten years come back, or develop new ones after ten years, some things can suddenly become triggers, and if you’re like me, you can begin to experience vertigo out of nowhere it seems. Since then, I have had experiences of vertigo a handful of times during a migraine attack, and sometimes on its own. I think this is now just a part of my migraine experience and am now in talks about how to address it. Migraine kind of keeps us on our toes in a way, because it is so ever-changing.

Have you experienced a new symptom or trigger out of nowhere that completely caught you off guard? How did you cope? Let’s discuss in the comments!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (39)
  • 8 months ago

    I was thrown back into this migraine world (i had them in my teen years, they went away mostly till recently – my 50s) gradually returning while dealing with chronic pain for years after cervical neck surgeries and all levels degenerative spine. Vertigo with migraine came on suddenly one day, total balance problems, headache became an ongoing daily two year battle that never went away. Vertigo became my aura- signaling headache would become a migraine. At first it was difficult to tell where chronic pain symptoms left off and where migraine symptoms took over. It took a long time to figure out what was going on. Finally, a change in my medication schedule broke the case and allowed us to understand what was happening. By this time I had advanced to migraine with allodynia. I had treaded into territory that let things go too far. I have vertigo, migraines, allodynia to the point my brain feels like it is tingling on fire and my hair even hurts. I just had occipital blocks and they were successful so we plan to move on to botox- I need to read on user experiences on that. This site has helped me so much. I am grateful for the shared stories- thank you!

  • Ann
    8 months ago

    In answer to MPip6 about describing my abdominal migraines: My abdominal migraines were diagnosed by my gynecologist after I passed through menopause. I complained about still suffering from cramps and other stomach ailments that I usually suffered monthly and was told there was no way it was menstrual connected and was in fact an abdominal migraine. He said abdominal migraines were said to be only manifested in children but he didn’t find that to be true because he treated adult women with abdominal migraines all the time. In other circles stomach issues in adults were diagnosed as stomach connected, IBS or some other stomach aliment but never abdominal migraine. Not to say IBS and other stomach ailments are not part of the medical landscape but abdominal migraines are usually never considered in making a diagnosis in adults. As far as my symtoms go my abdominal migraine is located in the middle of my abdomen and is more dull and feels sore. I may or may not have nausea, don’t have an appetite and always suffer from diarrhea. This usually starts in the middle of the night and I start to feel better in the early afternoon. I was told the vagus nerve connects the brain with the stomach and that’s a huge component of the abdominal migraine. I keep a log and I suffer from abdominal migraines the least of all my migraines. That also was an indication that it wasn’t IBS or some other stomach ailment. I hope this helps.

  • undefeatedbella
    8 months ago

    The first time I experienced Vertigo I thought I was having a stroke! I had no idea that it could accompany migraine! I honestly was very scared because I couldn’t stand up and my son was about 6 years old and I couldn’t even get him to school. Someone had to come over to do that but I called my migraine specialist and informed that yes this can happen. The scary thing for me is that it has been unpredictable and it’s a helpless feeling because I live alone with my son who is now 15 but is on the ASD spectrum. I also found out that I can not have my neck adjusted at all! About 5 hours after I would get a vertigo aura before the migraine. I thank you for sharing because it really is hurtful that many do not understand because one day they can see me a few hours before a attack and I look okay. One thing I can say about the vertigo aura is that I do need to be prepared. It has come on a little more often and I also can’t talk clearly or stand and have to get right to my bed. I feel really sad because I lost so much. But I refuse to say this is the way it will always be. When other people share it helps me so much. If anyone gives idea’s I will try them and then I also know that there is hope and I am not alone. Thanks for sharing.

  • Kyky Knight moderator author
    6 months ago

    undefeatedbella,

    You are so right! The first time was incredibly frightening. Even knowing that it could happen with migraine didn’t make it less scary for me! So sorry you had this alarming experience, especially while taking care of your son. You definitely are not alone in the feeling of having lost so much from migraine, know that we are here to listen, understand, and uplift you. I hope you are feeling well this week! Have a wonderful evening.

  • Ann
    8 months ago

    This site has been a great help to me. Migraine does keep us on our toes and it helps to learn about it from other sufferers. My new symptom is toothache. It signals a migraine is ready to attack as I’ve been back and forth to the dentist, endodontist, oral surgeon and no one can find anything to signify a tooth problem. I just wanted to add that I suffer from vestibular migraine, abdominal migraine and ocular migraine. I do not have head pain. My attacks either start with an ocular event or a vestibular one. Some attacks are strictly abdominal. I don’t refer to my migraine as a headache. I suffer from a neurological disorder that there is no cure for. Headache is just another symptom of this disorder like nausea, dizziness, toothaches and the myriad of symptoms that accompany this neurological disorder.

  • MPip6
    8 months ago

    Hi Ann, I’m sorry that you experience those types of migraines. They’re awful aren’t they? I, too, suffer from vestibular and ocular migraines as well as about 6 other types. I have often wondered if I suffer from abdominal migraines. Would you mind telling me what your symptoms are with them? The research I have found references mainly children and does not provide me much information. I suffer from many gastrointestinal problems and am just trying to put some pieces of the puzzle together. Any information you have is greatly appreciated! Wishing you pain free days – Mara

  • drboone
    8 months ago

    Vertigo, My Newest Companion is a great article. This is similar to the road I was on before educating myself that I have vertigo migraines.

  • Kyky Knight moderator author
    8 months ago

    drboone,

    Really glad the article resonated with you. Glad you learned more about your vertigo and migraines, and I hope that you are continuing to find relief. Thanks for sharing, and have a nice rest of your weekend.

  • MMS1956
    8 months ago

    I’ve had vertigo more than once. Usually a few episodes will happen over a few weeks or months after your initial. I was hospitalized overnight the first occurrence when I was diagnosed. I then went to the ear nose and throat specialist for him to “manipulate “ my head in ways to get the crystals back in proper place. I used to travel a lot for business so I purchased a product called
    “ The Dizzy Fix” which is a hat with apparatus attached to help you mimic the movements the doctor performs. It works.

  • Kyky Knight moderator author
    8 months ago

    MMS1956,

    Oy, ‘manipulate’ sounds scary, but it seems to have worked on your end! So glad you’ve found treatment that works for you, that’s awesome! Thank you for sharing, and for being a part of the community. Take good care.

  • mina08
    9 months ago

    I also suffered with vertigo on several occasions. I went to the ENT and they did many tests on me. I went to the Nuerologist and again many tests. My next visit to the Nuerologist I was seen by the Physician Assistant and I have to be honest I was very bothered that I had to retell my story once again. He had me lie down on the table and did some positional maneuvers. To my surprise the vertigo went away. I couldn’t believe it.. he was my savior. Vertigo is caused by the crystals dislodging from an organ within the chambers of your inner ear. There are videos online that show you how to do the “Epley maneuver”. When it happened to me again I had a friend do the movements on me and it worked. Hope this may work for those of you still suffering. Wishing all the best!

  • Kyky Knight moderator author
    8 months ago

    Mina08,

    Thank you so much for your well wishes to me and to the community! So glad you were listened to and aided by a doctor who knew what was going on! Hoping you continue to experience relief! Thank you for sharing what worked for you, and have a great rest of your weekend.

  • Cocodog
    9 months ago

    Good article! My migraines started with vertigo. It took awhile to get the correct diagnosis from a balance therapist. The neurotologist and ENT did not know what I had. I was basically in bed for 4-5 years. The vertigo went away for 4 years, then it was back. My neurologist started me on phenegan suppositories with 800mg Ibuprofen during vertigo episodes. Plus a long acting triptan, then another one in 4 hours. This new regime is making a difference. But I have to take the meds at the first sign of trouble. And Meclizine is my friend for flying and driving.

  • Kyky Knight moderator author
    8 months ago

    Cocodog,

    Sounds so familiar! So many trips to the doctor, tests, bills, and stress just to be told they don’t know. It can be so frustrating. It is awesome to hear however that your new regime is helping, I hope it continues to help! Thank you so much for sharing, and take great care.

  • shughes
    9 months ago

    Cocodog: Isn’t it amazing that ENT’s and Neurologists don’t know what it is? It would think at this point, all ENT’s/Neurologists should be able to diagnose vertigo as a symtom of a migrane.
    It is amazing too, how there are so many medicines and it is trial and error trying to figure out what will work and what won’t, but since the good doctors have a month or two wait time for an appointment, the discovery of the “right” medicine that works can be a long process. There has to be a way to take a blood test or something and see what medicine would work best to make the healing happen sooner.
    I worked as a teacher through my dizziness. I sat down most of the time, bumped into kids in the hallway, and bribe them to have them stay quiet. Thank goodness for holidays and summer break!

  • shughes
    9 months ago

    I have had month long constant bouts of dizziness since high school. All of the doctors throught I was depressed and my mother eventually bought me a dog. lol. Later in life, an ENT said it was sinus issues and that was the diagnosis I believed it was until at age 4. When my month long dizziness turned into months .. and MANY doctors later, a neurologist diagnosed me with a vestibular migrane. Instead of a headache, my inner ear swells and causes dizziness. This “migrane” will not turn “off”. I just started taking Cymbalta after a constant dizziness of 1.5 years, has finally helped me. No one believes me when I tell them. Most people think of a migrane and think of intense head pain. I have other symtoms too… light sensitivity and noise sensitivity…. I want to go back to that doctor from 30 years ago and say… “See… I wasn’t crazy!”.

  • Kyky Knight moderator author
    8 months ago

    shughes,

    Wow! So sorry to hear that you had these experiences of vertigo, and so frequently. Though I hope the dog brought you joy, and that is was a very sweet companion. I so relate to the feeling of wanting to go back to all the ones who were dismissive or tried to write the pain off as something else, all too common for sufferers of chronic pain! Know you are not alone. Thank you for sharing, and take good care.

  • RemoteControl
    8 months ago

    Yep… I have had six month long vertigo incidents as well supplemented by acute events. Numerous tests, diagnostics and tests for a problem that seems to be able only to be resolved by time. I had an ENT that effectively told me to go away, as the Epley maneuvers and other treatments simply do not work. Where I have found some relief is physical therapy, basically training the body to compensate for the vertigo symptoms (it is not fun and outside the normal prescribing practice of my neurology provider). Meclazine helps a bit too, mostly taking the edge off.

  • Kyky Knight moderator author
    8 months ago

    Remotecontrol,

    Oh goodness, I am so sorry you were dismissed by the ENT, and that it had been so difficult to find effective treatment. I have done a bit of physical therapy, and my experience concurs with yours, expensive and not fun. I hope you are able to find more relief soon, and that you have a wonderful rest of your weekend. Thank you for sharing, and take good care.

  • shughes
    9 months ago

    I believed until the age of 48… not 4. 🙂

  • KOKOMOBEACH
    9 months ago

    I have suffered with migraines for as long as I can remember. As a child they thought I had the 24 hour flu all the time. I have had almost every type of migraine. In 2000 I had severe benign positional vertigo. The first round was 7 weeks. The second round 10 weeks. I couldn’t walk through a doorway in my house without having severe anxiety and spinning. I had a wonderful neurologist that would work me in immediately. She would do a maneuver to put the crystals in my inner ear back in place. Between bouts of vertigo and migraine life was miserable. Four years ago I had my first vestibular migraine. Walking out of a store on to the street Blindness, nausea, head exploding and severe vertigo. I almost fell. Finally made it to my car. I sat there for almost an hour. Finally it subsided enough to drive home. This became my new reality. Neurologist diagnosed vestibular migraine. Last year I lost so many days. I was in an elevator going to my doctor. When I stepped out I had another attack. I talked to my Doctor and he asked if I had ever seen a vestibular therapist. I said yes, but it didn’t help. He sent me to another therapist and 8 months later I am controlling my life. I do the exercises at the slightest hint of vertigo or migraine. Don’t give up! I still get very anxious, but I have another tool. Today my eye Doctor said my eyes weren’t twitching anymore. I smiled and said yes. I am much better!

  • Kyky Knight moderator author
    8 months ago

    Kokomobeach,

    Thank you for sharing your experience with the community. I am so sorry to hear of your experiences with migraine and vertigo, and that you have the experiences so often. It sounds like you are very strong, and that you had a truly caring and patient neurologist! That is always awesome to hear. I hope you are able to find more daily relief soon, and that you have a wonderful rest of your weekend.

  • Corinne Schultz
    9 months ago

    I experience vertigo with and without migraine. But regardless how it comes, I always end up with migraine. I’ve experienced many episodes of vertigo that have lasted months. I think I’m okay and boom it hits me again. It is extremely debilitating. Meclizine was my friend for a long time until it stopped working. I would take 50 mg every 2 or 3 hours when I feel the first sign, but it doesn’t work if it has gone full blown.

    The thing about Vertigo is it lasts for along time. You think it’s gone but then you move or walk or start to drive and a new wave hits. My experience is I have to sleep it off by pretty much not moving for a week for it to stop. Otherwise it keeps getting “triggered”. Each episode is different, but I know I have to be cautious and respectful of the process to let it settle down.

    Ps: doggy poop bags make excellent barf bags. I keep them in my car at all times.

  • Kyky Knight moderator author
    8 months ago

    Corrine Schultz,

    I am so terribly sorry to hear that you experience vertigo that lasts so long, and that you are not getting as much relief now as you had in the past. You are so very strong. Have you found anything that helps a bit since the Meclizine stopped working? I hope you are able to find relief soon. Thank you for sharing, and have a wonderful weekend.

  • deedueck
    9 months ago

    I thought that having daily chronic migraines was debilitating, until the vertigo started 9 months ago- it adds a whole new dimension to everyday activities that is for sure!!so sorry you are experiencing this, it’s nice to know I am not alone

  • Kyky Knight moderator author
    8 months ago

    deedueck,

    I can so relate — vertigo is an entirely other world of debilitation, and when it takes you by surprise it can be really difficult to navigate. To you, likewise, I am so glad I am not alone. Thanks for the reminder, and for being a part of the community and sharing your experience. Take good care.

  • lightweaver
    9 months ago

    I never know if it is my migraine or my MS making me so dizzy. Always wondered how Jimmy Stewart did the stairs in Vertigo.

  • Kyky Knight moderator author
    8 months ago

    lightweaver,

    oh my gosh, those stairs would not go over very well for me at all! Such a wild film! So sorry you have to experience this debilitating disease along with vertigo. Thanks so much for sharing, and take good care.

  • KatherineO
    9 months ago

    P.S. I also think part of might be somehow related to anxiety, because when I get anxious, I get sick to my stomach. Does anyone else experience this?

  • KatherineO
    9 months ago

    I developed this about two years ago. It comes on very quickly with no warning at all. One time I was in the middle of teaching a class. The most recent time I was actually in my therapist’s office. Sometimes it’s motion sickness related. Sometimes it’s before or after the migraine. It’s also completely debilitating. At first I thought it might be an inner ear infection. Then my ENT said it was vestibular migraine and that I should go to a vestibular specialist. I decided not to do that because I knew that the “testing” was going to make me feel suicidal. My headache doc told me that almost half of people who suffer from migraine get related vertigo. My rescue is half a xanax, half a dramamine, and if that doesn’t help, zofran. It’s been the zofran that’s saved me. The feeling of the world spinning is, for me, as bad as the pain from the migraine.

  • Kyky Knight moderator author
    8 months ago

    KatherineO,

    I so relate to your post. Sometimes the process of getting a diagnosis can be excruciating, and so taxing, that its easier not to go through all the testing, hoops, and financial burden of doing so. I am so glad to hear that you found something that works for you to at least help to relieve the vertigo some. Always wonderful to hear that our community members are finding relief. Thanks so much for being a part of the community and for sharing. Also, I do get nauseous as well when I feel anxious. Have a wonderful weekend.

  • Sportsfan
    9 months ago

    I am sorry that you have experienced vertigo. As a migraine sufferer I too experience migraine related vertigo and it can happen with and without a migraine headache. A neurologist and ENT doctor diagnosed it as migraine related. I know it is scary and can happen within seconds. Ask a neurologist who is familiar with vertigo related to migraine about a low dose of valium. A neurologist prescribed this and it does help if you can take it at the onset of the vertigo. It is a neurological condition for people with migraines. I hope you feel better and thank you for your articles.

  • Kyky Knight moderator author
    8 months ago

    Sportsfan,

    Thanks so much for sharing your kind words of encouragement, and for sharing advice about treatments that are out there for the migraine related vertigo, as well as what has worked for you. While everyone experiences the disease differently, it is always so great to hear when someone finds relief. I hope you have a wonderful weekend, take good care!

  • DATZMYDREAM
    9 months ago

    I get vertigo with all it’s lovely friends like nausea, usually when I have no pain. When I told my doctor, he said I was having silent migraines with vertigo. Just great, that makes 5 different types of migraine that I suffer from and sometimes I have more than 1 kind at once. Sometimes you Judy ant catch a break

  • Kyky Knight moderator author
    8 months ago

    Datszmydream,

    I hear ya! It really does feel like we can’t catch a break sometimes when living with chronic pain, especially when it compounds! Know you certainly aren’t alone in experiencing more than one type of migraine at once! There are seriously so many, and we all have such varied experiences of each. So sorry you have to experience any of it. Thank you for being a part of the community, and for sharing your experience. Take good care.

  • imdawoman
    9 months ago

    Sobriety test?? What’s up with that?? I would be livid. I also have vertigo. It has been crippling as well. No real help, either.

  • Kyky Knight moderator author
    8 months ago

    Imdawoman,

    I was, indeed, very upset and taken aback. All too similar to the feeling I know many of us experience when seeking our life saving medications at the pharmacy, believing patients and their experiences could go a long way! Thank you for contributing, and take good care.

  • Drea99
    9 months ago

    My migraines started in my 20’s as some visual disturbances and headaches. In my mid-thirties, I had the surprise vertigo out of nowhere (that resulted in lots of testing and I officially learned I had migraines). Now I get nerve pain in my hand, left eye pain, neck pain, nausea and more! After a family funeral (high stress), my left leg would get pins and needles and feel numb. That also resulted in lots of test! Yucky, unpredictable migraines!

  • Kyky Knight moderator author
    8 months ago

    Drea99,

    Wow, I am so terribly sorry to hear of the way migraines affected you, particularly with the onset of vertigo and the stress and nerve pain that came along with it. You are incredibly strong. Thank you for being a part of the community, and take good care.

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