Jennifer discusses how she overcame chronic vestibular migraine, from diagnosis to healing and how she made it through and leads a normal life. #vestibularmigraine #vestibulardisorder #chronicillness
Diet,  Exercise,  Supplements,  The Treatment Pie,  Vestibular Migraine

Drowning in Symptoms: How I Overcame Chronic Vestibular Migraine

The Night That Changed My Life

One perfectly normal night in April 2016 I went to bed feeling healthy. I turned over in my sleep in the middle of the night and felt hard, room spinning vertigo. I was instantly nauseous and vomited for the next few hours but, by late morning the next day, I felt mostly recovered. As long as I was upright I felt normal, but if I laid back I felt hard room spinning vertigo again. I had what seemed like textbook Benign Paroxysmal Positional Vertigo (BPPV). BPPV happens when calcium carbonate crystals located deep in the inner ear get knocked out of position. These crystals usually float in a gel like substance and are there to let your brain know where you are in space. When they become dislodged they can travel into an ear canal and send false signals of movement to your brain resulting in spinning. I was unable to get in to see my primary care physician so I made an appointment with a nearby ENT. The ENT confirmed BPPV and completed an epley maneuver (where they roll you across a table to reset the crystals in your ears). This usually immediately corrects BPPV, but when I sat up, I felt dizzy. Not hard room spinning vertigo but, overall dizzy.  This scared me because I felt normal when I was upright before the epley. The ENT decided to send me to a dizzy clinic where they completed a series of vestibular and balance tests and concluded that crystals got caught in my posterior ear canal during the epley maneuver. They said it happens sometimes and that they could fix it. I saw them three days a week for the next three weeks for a variety of epley type procedures in an attempt to reset the crystals but, their procedures didn’t work. In fact, the more procedures they did, the dizzier I felt and the more symptoms began to appear. 

Let’s Talk About My Symptoms

The worst symptom for me was that I felt too much motion every time I moved. That sounds like no big deal but I can’t begin to explain how terrible it feels. Walking felt like whirling and the ground felt unsteady below me, like walking on a boat or on a floor made of marshmallows. It was so uncomfortable I mostly stayed as still as possible but, even that didn’t relieve my dizziness. While sitting perfectly still, I had the feeling I was rocking and swaying. While standing perfectly still I’d suddenly feel a dropping sensation. You know the feeling you sometimes get right as you’re falling asleep where you feel like you’re falling? That’s the dropping sensation that would continually come out of nowhere. 

Have you ever been sitting in a row of buses and one bus begins to move and for a moment your brain cannot distinguish if your bus is moving or if it’s the bus next to you? I was in that constant state of confusion when I moved and when I saw something moving.  My brain couldn’t determine if I was moving or if it was the object I was looking at. Feeling like I was moving while I was sitting still made me have to constantly react and have to brace myself from falling when it wasn’t really happening at all. I had difficulty focusing on and visually tracking objects and had increased dizziness from seeing moving objects like ceiling fans, trees swaying, water rippling, computer scrolling and tv screens. Moving objects appeared to have a stop start, glitchy, robotic motion.

Along with the dizziness, feeling too much motion & confusion I had pain at the base of my skull. I had sensations of temple squeezing, brain zaps, head tingling and crawling (like bugs crawling under my scalp). I had head pressure, neck pain and jaw pain. Sometimes the jaw pain hindered my ability to talk and to chew. I had ear pressure, ear popping and ear ringing that fluctuated in volume. Sometimes it was quiet, other times it was screaming loud. I had heat intolerance and almost constant nausea. I felt physical pain from the scent of fragrance, cleansers and candles. I had pain from natural light and from noise. Hearing loud sounds would trigger that startling dropping sensation. I had constant ticks and twitches in my head, eyes, lips, face, hands and legs. I had painful spots (called allodynia) that felt like bruising all around my face and head. I had foggy vision with areas of my visual field blacked out. I was weak, so weak talking felt like an effort. I had positional vertigo. I couldn’t lay flat, tip my head back or down without hard room spinning so I held my head ridged every day, all day… for months!

Except to go to the doctor and to attend a family birthday brunch, I didn’t leave my house for 3 months. Because when walking feels like whirling, it’s SO hard to function. I was too dizzy to drive. Just walking to the end of the driveway to get the mail made me nauseous because of the exaggerated movement I was feeling. I tried SO hard to hide the extent of how bad I was feeling from my friends, family and my partner fearing it would be too much for him. But, by the end of the third month I was drowning in symptoms. I was drowning in depression and anxiety and I was losing hope. I wasn’t dying but I was so miserable that, for the first time in my life, I wished I was. 

How I Got Diagnosed

I feel so lucky to have landed with doctors who heard and believed me, doctors who could see my symptoms because explaining some of them sounded strange even to me. But, they could see the ticks and twitches and the rapid weight loss. They could see nystagmus (eye rotation that happens when you’re spinning & when your brain thinks you’re spinning even when you’re not) and they could see test results that verified my complaints, for that, I am thankful.  But, even with the test results, they had difficulty accurately diagnosing me. Here’s what’s important about that… doctors can’t successfully treat you without a diagnosis. So while they pondered or had me try a treatment or passed me on to the next specialist, I continued to suffer. 

It took 3 months, 5 doctors, 4 faulty diagnoses and a load of uncomfortable procedures to finally receive an accurate diagnosis and treatment plan. I lost 17 lbs. while I waited for diagnosis. At 100 lbs. on a good day, that’s nearly 20% of my body weight!  I nearly lost my job. Doctors said scary things during that 3 months, things like “We’re going to look for a brain tumor,” “maybe it’s viral,” and “I think you have early onset MS.”  I didn’t have any of those things. Finally, after a round of antiviral medication didn’t help me a doctor said “I want you to see a guy in Tampa.” That’s when I drove an hour from my home to meet my 5th doctor, a neuro-otologist & skull base surgeon who I have the deepest admiration for. Doctor Danner at Tampa Bay Hearing and Balance in Tampa, FL finally diagnosed me with Vestibular Migraine. Vestibular Migraine!  I mean seriously…what!? I had SO MANY symptoms…really weird & debilitating symptoms but never a headache. In fact, at that moment, I’d never really had a headache ever in my life and I have migraine. A rare and variant form of migraine. My symptoms were not episodic and they were not dizzy spells. I didn’t “get migraines” with dizziness. I had 24/7 dizzy torture…every day, all day for months. Like somehow a migraine switch turned on in my brain and I couldn’t turn it off. If you take nothing else from my story understand this, migraine is not a headache… a headache is just one symptom of the neurological condition called Migraine.

There are many different types of migraine and seemingly endless ways to suffer from them. Migraine needs to be rebranded. It is not just the worst headache ever. Migraine is a debilitating neurological condition for which there is no cure. Migraine disrupts normal neuronal activity. Think of it as an electrical storm in the brain. Symptoms vary depending on where these storms of abnormal activity occur in the brain. My migraine disrupts communication between my brain & vestibular system & makes all of my senses feel amplified and like they’re not working simultaneously together ever. When the system is disrupted, balance, control of eye movements and sense of orientation in space are all adversely affected. It has made my brain hyper responsive to movement, light, noise, chemicals and scents. Even now, with my symptoms under control, the world feels brighter, louder, more fragrant and busier. On the evening of my diagnosis, 3 months after my 24/7 symptoms onset, I got my first “migraine” (the worst headache ever that lasted about 4 days start to finish) just to add to the fun.

My Treatment Plan

My treatment plan includes three well outlined strategies: a preventative plan, an abortive plan and a rescue plan. My preventative plan is the most detailed & includes supplements, diet restrictions, exercise to restore balance, adequate hydration, a regular sleep schedule and a preventative medication. I follow a liberated Heal Your Headache diet and I was strict with it until I determined my food triggers. My everyday supplements include magnesium glycinate and threonate, ginger and turmeric and B complex. Each one is taken with purpose to help suppress a specific symptom. For example ginger and turmeric help with pain and B Complex & magnesium threonate help to minimize fatigue caused by my preventative medication as well as brain fog. My abortive plan includes a triptan and an anti-nausea medication just like an abortive plan for more typical migraine would. My rescue plan includes a low dose benzodiazepine. I used it short term in the beginning as a vestibular suppressant, to dampen dizziness. Now I use it to kick out dizziness that occasionally creeps back in. After 3 months of being so dizzy that I was unable to leave the house and another two months of implementing my treatment plan, it slowly began to work and I found relief… finally! Dr. Danner saved me and I will forever be grateful to him for it. 

My Life Today

I have had Vestibular Migraine now for more than 2 years. I work full time as an Early Intervention Specialist and I live an active life with my sweet guy and our three dogs. Walking no longer feels like whirling, my weight has stabilized and my symptoms are less severe, but I’m not cured. I still struggle to suppress symptoms every day. I still have daily ear ringing, ear pressure changes and popping sensations. A year after symptoms began my ear symptoms moved bilateral from only my right ear to my left ear as well. As a result, in 2018 my neuro added Meniere’s disease to my VM diagnosis. Both are very closely related (but, that’s another post). I still can’t tip my head back or upside down (to blow-dry my hair) without dizziness & nystagmus and I still get vertigo if I lay on my right side but, I’m working on it. I have dizzy moments usually in busy, noisy, fragrant or hot places or after eating hidden triggers but, I am no longer dizzy all the time. Yay! The head pain part of my VM is episodic and comes about one to three times a month.

I found support and people just like me on Facebook. That’s also the place where I met some of the most amazing and strong men and women fighting their own migraine battles that I now call my friends. I share this blog with four of them. I’ve learned that vestibular migraine is a fairly new diagnosis and because of it doctors are not swift in reaching diagnosis. Most vestibular migraine patients wait months for diagnosis even though it’s the second leading cause of dizziness. Let that sink in. Vestibular Migraine is the second leading cause of dizziness yet we… wait… months! Let me be clear in saying I’m in no way bad mouthing doctors. Doctors saved me and honestly, they can’t know everything but, because of my personal experience, I am passionate about raising Vestibular Migraine awareness and helping others who are still drowning in symptoms to minimize the days they spend suffering. 

If you have migraine or vestibular migraine, please feel free to follow Migraine Strong on Instagram & Pinterest or join the group Migraine Strong over on Facebook where you can talk with me (and the rest of the Migraine Strong team) directly or message us right here anytime. You can also find me guest posting on The Dizzy Cook blog once a month baking up yummy head safe treats.  If I can help you, let me know how.  Xo

Photo credit: Late Flower Photography

This post contains affiliate links.

I was diagnosed with Vestibular Migraine in 2016 and my neurotologist added a Ménière’s Disease mild diagnosis in 2018. I went from being housebound for months to working full time and living an active full life by following the Migraine Strong treatment pie. Preventive medications, the Heal Your Headache Diet and supplements do a lot of the heavy lifting in relieving my symptoms. You can also find me over on The Dizzy Cook blog baking yummy head safe goodies on a guest post each month.

61 Comments

  • Chris Hannum

    Wow. Those are my symptoms EXACTLY, right down to the pain at the base of my skull, the temple squeezing, and the head tingling. In a way, those are the scariest for me, ‘cuz my neurologist isn’t an expert in VM and when I mention stuff like that she says, “I’ve never heard of that”. Not very reassuring. Thanks for posting this, Jennifer. I’m still hoping to get where you are in my recovery.

    • admin

      You’ll get there Chris. Know it with all the hope and fight you can muster. You’re making progress. Thanks for your comment. I’m sorry you’re going through it. Xo

    • Lynn Tucker

      I loved reading all of this information,
      And it gave me a lot of insight. Ironically,
      I am going to the same doctor’s office for my
      Testing! I think that my final dx will be vestibular migraines. I have had “regular”
      Migraines for years, but they have been controlled with a preventative medication. My vestibular symptoms have just recently surfaced as I’ve gotten older. Dr. Danner’s Office is very thorough and I’m confident I too
      will get the answers I need. Thank you for sharing your story!

  • Jeremy

    Thanks for a great article. Recommended to me by Dizzy Cookbook on Facebook. I’ve just been diagnosed with VM but know nothing about it. Been struggling with symptoms (luckily not a severe as mentioned in article) for 2.5 years now. Happy to have a diagnosis but looking for all the info I can get to get better. 😀

    • Jennifer

      Hi Jeremy, we’re so happy you found us! Let us know if we can help you with anything specific. If you haven’t already, come on over to our Facebook page where we post and interact with members daily. xo

  • Lisa Bonevento

    Wow. These are all my symptoms as well. With the exception of losing weight in the beginning. My writing skills have gone down the tube so please for give me LOL. But otherwise things are a little better. There is one medication I did add into my life it is called Trokendi XR.

    My story starts 19 years ago. I gave birth to my handsome son on September 7, 1999. I woke up September 14, 1999 and could not see the room. And that’s where my story begins. I was diagnosed with vestibular migraines.
    I love all of these blogs it always gives me hope for a cure one day. But I do believe in eating healthy, Exercising to help your balance and to stay strong.

    • Jennifer

      Hi Lisa, Thanks so much for your comment. I just saw you pop up on my IG. Keep your eye out for a DM from me later this evening after work. 😘

  • Evang

    I am currently going through exactly what you wrote and it has cause me so much stress and anxiety. Which triptan are you on and how many mg? My doctor put me on amitriptyline 20 mg for now. I will look into the other thiings you mentioned and hopefully they will help as well.

    Thanks for sharing.

    • Migraine Strong

      Thank you for your comment. I’m so sorry you’re going through this too. When I have head pain, I use ginger, magnesium and naproxen 500mg to abort it. That usually works for me but, if I’m having a baddie, I add zomig (zolmitriptan) nasal spray 2.5 mg and Reglan for nausea. When I have a dizzy attack without pain I take ginger, magnesium and very low dose Valium. I cut a 2mg tablet into quarters and take one quarter every couple hours until the dizziness is kicked out.

  • Kathleen Stevenson

    The medical profession has a lot of catching up to do! My doctor said he had no idea how to deal with my symptoms. Jennifer, our symptoms are simiIar except I have no hearing issues and I had a headache or a migraine every day for 14 months straight. One neurologist said BPPV the second said it was a vestibular migraine but was only interested in treating the headache not the dizziness, brainfog or vertigo. Thank goodness for google and support goups. I did the Headache diet and had to make a couple of minor adjustments to what I eat, word of mouth for migraine relief lead me to magnesium a month ago and I have been headache free for three weeks! I also replaced the florescent lights in my office with LED ones. I had several adverse reactions to migraine medications so I am still searching for a good fit. Bright lights, loud noise and open spaces are external triggers. Regular VRT has saved my sanity. I have to travel to a different city for it but to hear that my symptoms are normal for my condition and that I am not crazy or imagining things has helped my mental health immensely plus the exercises are helping! We need to share our stories and our successes so that others know there is hope and may find a solution in our comments. I am making progress and every day is a different adventure.

    • Migraine Strong

      You are not crazy and you are not imagining it. Vestibular Migraine is a neurological condition not a psychological one. The vestibular part of your VM needs treatment. My doctor believes it’s cruel to not address the dizziness and vertigo that comes along with VM and I agree with him. I’m so sorry that’s not happening for you. Please come on over to our Facebook group. I’m happy to help there anytime. In the meantime keep advocating for yourself. You are so strong dealing with this without the proper treatment plan. Xo Jenn

      • April

        Hi Jennifer! I just got diagnosed with VM today after months and months of symptoms similar to yours. Can I ask what medication you took? My Neurologist is wanting to prescribe a tryptyline.

        Thanks!
        A

  • Gemma

    Hi Jennifer, just wanted to say thanks for the great article. It’s reassuring to hear other people’s stories and know that there are other sufferers out there, this illness can make you feel very alone!!

    I can completely sympathise with your symptoms. I was diagnosed back in 2012 after suffering for a few months, it’s been quite the rollercoaster ride since then (quite literally).

    It’s been so reassuring to read everybody’s stories and how they’ve managed to learn to live with this illness. It really does give me hope. So thanks for the continued work you do.

    • Migraine Strong

      Thank you so much for your kind comments Gemma. It was really hard to put myself out there in such a vulnerable way but, my drive to raise awareness won out over my fear. Your sweet words mean more than you know. I’m also comforted to know I’m not alone. Wishing you continued strides in suppressing your VM symptoms. Xo Jenn

  • Karen Mizrach

    I have a similar story and am beyond grateful for all the support and information from people on FB. It has saved me to know there are others with this condition and to share ideas/frustrations/hope. This condition is often described as “rare”, but from the many who seem to share the symptoms, I believe the only thing that’s rare is finding doctors who understand and learn about it.

  • Barb

    Oh, it is nice to know I am not alone in this. One day I bent over to put my dog on a leash, and some invisible force knocked me over. I stood up with ears ringing loudly, blurred vision and such dizziness, I could barely get into the house. It sounded like BBVP but it wasn’t. I was diagnosed with Meniere’s and then later with Vestibular Migraines. I will be horrible for many months and then it will get a bit better with just mild dizziness, until the next time it gets worse. Lights (LED LIGHTS!), certain sounds (dishes or silverware clanking together), perfume, or motion can trigger it to get so much worse. LED lights are everywhere, computers, TV, phones, most light sources, ugh. What misery. Thanks for the tip on the supplements, I think I will try it. I haven’t heard of the Headache diet, but I’ll search for info about it. Thanks again!

  • Ava Johnson

    Thank you for sharing. I was recently diagnosed w a vestibular migraine but did not have headaches or pain, just severe dizziness, lightheadedness and spatial disorientation, light sensitivity.

    Question – you mentioned taking a preventative medication. What do you take?

    • Migraine Strong

      Hi Ava, Come on over to our closed Facebook group Migraine Strong. I’m still shy about sharing medication details publicly but, I’m happy to talk to you in detail there. Xo Jenn

  • Peggy

    Thank you so much for this write up. I also have chronic vestibular migraine and Meniere’s disease. I started Botox with Topamax in December and it has helped quite a bit, but I still am very disabled by all of it. Can you tell me if you take the ginger and turmeric every day, or just when suffering from symptoms? I also take the B complex and magnesium, as you do. I’m not sure it helps, but I take them anyway!

    • Migraine Strong

      Hi Peggy, I take Gaia Herbs Ginger Supreme and Turmeric Supreme Pain everyday as a preventative and I take a second capsule at the first sign of an attack. There is good research behind magnesium and B2 for migraine prevention so if you’re not having any adverse reactions I’d keep at it. Xo Jenn

  • ME

    It only took you three months and five doctors?

    When mine started in 1990 they would just shrug and tell me I’m dizzy and it may go away. They would laugh out loud when I told them about it being related to my periods. Women should keep calendars of the headaches and periods. It’s amazing how much hormones play into migraines. I was told it was just panic attacks and anxiety or I was imagining it. I didn’t get a diagnosis until a Complex Migraine temporarly paralyzed me five years ago. The things they learned in the 25 years since mine started is a huge improvement and I’m glad they know more for people like you.

  • Elvira Rice

    My daughter has VM and also has Superior Semicircular canal dehiscence which she just had surgery on, but still has another one on the other side. We don’t know if the Migraines are causing all the dizziness, or the Superior Semicircular canal dehiscence is ? and the dizziness, brain fog , sounds bother her and her eyes feel unfocused a lot of the time this is 24/7 for almost a year now 😩 it breaks my heart! She’s been on a migraine diet which doesn’t seem to be helping at all , she’s lost 50 pounds and she’s giving up 😢 I don’t know how to help her besides just being here for her . If anyone has any information that would help us Please I’m desperate

  • Arianna Jones

    It’s great that you talked about the many ways on how to be able to identify vertigo–and then how one can be able to treat it. Going over to a doctor is one of the best ways to be able to determine what kind of vertigo one is suffering from, as well as getting the advice on how to treat it. If I had the chance to learn more about what exact kind of vertigo was bothering me then I would have a better understanding of how to avoid it and how to treat it should I get caught in it.

  • Melissa

    After suffering from chronic migraine for over 20 years, I suspect that I just endured my first vestibular migraine episode. I am already on a restricted diet, 150 mg of Topiramate, and regular Botox injections. Not sure what is left to add to my treatment plan if (and I guess when) this escalates. I just turned 41, which seems to be a common age for onset. I’m so discouraged.

  • Tabitha Franks

    Thank you so much Jennifer for sharing your story. I appreciate your ability to so clearly articulate the symptoms and the way they make/made you feel. I have your same diagnosis and have been trying so hard to articulate. Luckily for me, I now have 2 neurologists – a migraine specialist and allergist/meniere’s specialist that work in tandem. But it almost makes me cry to read in such clear detail what I have been feeling and what so many don’t understand or minimize. Happy life to you! And LOVE the Dizzy Cook!

  • Hope

    I was dx’d with Vestibular Migraines and didn’t believe it. I too had pain in the base of my skull, dizziness, vertigo, pain behind both eyes, nausea to noise and light, busy rooms, etc. I recently went to a physical therapist that specializes in vestibular issues, she dx’d me with neck issues and inner ear damage from antibiotics. Neck exercises is helping to alleviate almost all my symptoms. I hope this info can help others that may be suffering from neck issues that are mimicking the symptoms of vestibular migraines.

  • Pauline

    Hi Jennifer, I just read your post, I had almost the exact same thing happen to me last year! I was suffering from neck pain already, then I had an episode of bppv, felt ok at first after the Epley but continued to have strange dizzy spells (sudden dropping feeling) as well as pressure in my head and tightness in my neck. Eventually developed a constant rocking sensation and walking felt like walking on a dock going up and down, as well as the inability to look at anything moving or bright patterns withouts feeling dizzy.
    This has been going on a year straight now, I feel a bit better while driving myself in a car (no rocking feeling really) which lead to my diagnosis of Mal de Debarquement Syndrome (MdDS). But I still get quite motion sick while riding as a passenger or on a plane, so I was never really sure if I truly had that. Most people with classic MdDS feel much better while back in motion.

    I’m very interested in if you drove at all during you dizziness and how it felt? Did your doctors ever mention MdDS to you? Also what medication as a preventative do you take?

    Thanks! Gonna check out more of your website now

  • Ana

    Thanks for sharing! My husband was diagnosed with a vestibular problem recently, but he has symptoms of head pressure, zaps, and tingling that does not seem to “correlate” with a vestibular problem. The neurologist told him he seems ok, and to do physical therapy and see if that takes care of it. We are scared of what could happen if we don’t treat it… I think your symptoms are the closest we have found to his! he has not been able to work for over a month. His anxiety has increased as time passes. Thank you for sharing a story of hope! Tips and experiences that help us feel understood… was your problem triggered by something in specific? How long did it take you to feel “normal” after you changed your diet?
    Is there any other tips you have to decrease the uncomfortableness? He has been seeping on the couch as it is the only place he finds comfort sleeping almost seating 🙁 thank you for your help!

  • Carolyn

    Thank you so much for your descriptions! Your symptoms are incredibly similar to my own, although your symptoms seem to be much more severe than mine. I have been on this journey for over a year now, and I do not yet have a diagnosis of Vestibular Migraine, but it’s what I believe I am suffering from. This will be helpful when I talk with my neurologist. Again thank you, and my hope is that you continue doing well.

  • Pat Long

    Jennifer, thank you so much for shedding light on this condition! I bet I’m not alone in feeling like I’ll scream if one more well-meaning person describes some variation of the Epley maneuver they know will solve all my problems with vertigo if I will only try it… my problem began 6 years ago when a flu-like virus attacked my ears. I eventually learned I had lost 30% of the function of the vestibular nerve in my left ear. Eventually I found a wonderful headache specialist who made sense of all my crazy symptoms and diagnosed vestibular migraine and some related neurological issues…he also describes it as a “storm in the brain”. I appreciate your positive attitude! Thanks again.

  • Lisa B

    Thanks for sharing your story. I’m pregant with this and it is absolutely awful. I’m very limited to medication and don’t want to harm my baby. I know you said you had head sensations. I am having those exact ones everyday. Is it possible to relieve those without medication ? Do those ever go away? Any suggestions ? And how to help the constant floaty feeling without medication ? Can the magnesium help? I’m so desperate. This has taken over my pregnancy and I am depressed because of it. I would appreciate any feedback. Thank you so much!

  • Helen

    The post is so helpful, i am experiencing constant dizziness and feel so uncomfortable when seeing things moving, like children running around or watching cars moving on the road. My life has been so miserable that sometimes I feel hopeless. I did MRI, all of the tests and they are all clear. The last doctor I saw said it is Migraine. I never experienced headache. I am still on low dose of anti depressant. I am still not sure if I am on the right track. Thank you

  • Laura

    Most of what you said is exactly me! It took me a year to get a diagnosis of chronic migraine and then almost another year to get a diagnosis (no name for it) that my brain is ignoring my eyes. I was in daily vestibular migraine with tons of pain for 18 months straight. 2 years and 25 doctors to get my “diagnosis.” Starting my treatment plan which is VRBT early next month. Thanks for being an advocate!

  • Sandra Black

    Me, too! It all sounds so familiar. So many drugs my neurologist ( St Thomas’s hospital London) and vestibular otologist (Guy’s hospital London) have tried with me. Now waiting to trial either Pregamalin or Duluxatine…. Had Gammacore, Botox, TMS machine. But the whirling and nausea continues almost daily. I go from feeling alone and isolated, to wishing to be left alone and isolated…! Yes, even talking is hard and exhausting. Some of the new USA drugs can’t be used on over 65’s so no help to me. Often feel my life is over but am helped by sharing of others’ improvement. Grateful for this site!😎

  • Belva

    I was glad to come across your article when I was searching for information on vestibular migraine. It helps to know there are other people out there who understand what I am going through. It took me a while to find any answers after about 9 months, lots of tests, and several doctors I was finally diagnosed with vestibular migraine. The one doctor I seen was a neurologist at a University Hospital who told me he didn’t know what it was and basically said I just had to live with it. I finally got some help from a physical therapist I went to for the neck pain he did some testing of vestibular eye movements and noted I didn’t do well with them and my family doctor then referred me to another doctor for vestibular testing and that doctor immediately said after reading through all of my symptoms she was sure I had vestibular migraine. So at least I finally have a diagnosis now we are trying to find the right combination of medications to control my symptoms.
    It was interesting to read your article and the comments that followed. I sometimes feel like I’m going crazy with all of these symptoms that I have, especially when people tell me it’s just stress causing my problems.
    My symptoms just started abruptly, I woke up with most of them one morning, and then about 3 months later I started with the headaches. I have almost continuous blurry vision, to the point that I do very little driving. The blurry vision makes it difficult to do my bookkeeping job for our family business.

    • Migraine Strong

      It was exactly the same for me Belva. I just woke up with it one day and three months later head pain started for me too. Please join our Facebook group migraine strong for support. It’s not just stress or all in your head. You have a neurological condition. I promise you things get so much better. It’s slow but it happens! Try calming magnesium glycinate, try to keep your brain as calm as possible while you’re healing…no rushing around or getting angry. I hope you find your right combination of meds. Valium helped me in the beginning and nortriptyline gave me my life back. Hang in there! 💪🏻😘

  • Victoria

    Hello Jennifer I was reading your article and that is an amazing story. I’m glad I came across your story. I’ve been dealing with my symptoms 2yrs this yr will make 3yrs. And like you I’ve been dr to dr and every1 says nothing is wrong. But now the current ENT i went to is wanting to refer me to a neurologist but they’re thinking I may be having vestibular headaches. So with your dizziness did you get the spinning sensation to or just felt dizzy in the head?

  • Jennifer

    Hi Jennifer, it’s been 7 months now since I was diagnosed. I am struggling and getting frustrated. it seems that not many physicians know much about how how to treat VM. My neuro doc is super patient but not really sure how to treat the disorder. I was started on Trokendi (extended release Topamax) and it’s not working. I need to switch and I’m not sure what is better a beta blocker or SSRI. I do not have anxiety or high BP. I’ve heard people not have success with noritrptyline and heard it can make you more dizzy. I know everyone is different. I am curious, did you have anxiety as well with your VM? What made your doctor choose your medications? Did you get dizzy with it?

    • Migraine Strong

      Hi Jennifer,
      I’m so sorry to hear you haven’t found relief yet. 7 months is too long! I was REALLY sick when I finally received diagnosis. I’m small and weighed 103lbs pre-VM. I lost nearly 20lbs from being so nauseous for so long. My doctor chose nortriptyline because a side effect is weight gain and I desperately need to put weight back on. I’ve been on it 4 years and have returned to me pre-VM weight. I’m now 105lbs so I wouldn’t worry too much about weight gain if that’s an issue for you. I also took very low dose Valium (1/4 of a 2mg pill) in the beginning to help calm my dizzy brain down and to help the nortriptyline work. Nortriptyline never made me dizzier. Keep in mind MANY with VM are med sensitive and are terrified to start new meds. That alone will increase dizziness and patients often attribute it to the med. Listen in groups, but don’t let the experience of others determine what you and your doctor decide. Hope that helps.
      Xo Jenn

  • Jennifer

    Thanks Jennifer,
    I’m so thankful to find your blog and Alicia’s blog. It’s helping me a lot! I sat in tears this morning just so frustrated that I feel like I’m moving backwards on some days and the last few days have been bad dizzy days. I actually live in Sarasota so I decided to call this morning and I made an appointment with Dr Danner … I see him next month. I didn’t realize there was someone who specializes in VM until reading more of your blog! I now feel a little empowered. I like my neuro but I just feel he doesn’t quiet know enough on how to manage this. I’ve always said I feel like my brain needs something to calm it. The Trokendi doesn’t seem to be working and it’s a high dose. I’ve done Botox twice and it just makes my ears burn. The dizziness is ramping up and the ear pain is returning. My left temporal artery just pulses constantly. That side of my head is tender. Lights drive me crazy. I feel like I’m walking on marshmallows and I’m just constantly dizzy unless I’m sitting with my head against something. It’s time for a second opinion. I’ve not even been advised by my neuro to do the diet or supplements… I started that myself through finding you guys. I appreciate you responding as I try to learn more about the medication options. Thank you for everything you’re doing to help others!

    • Migraine Strong

      It definitely sounds like vestibular migraine is still running rampant. I’m so happy you’re trying diet and supplements and I’m so excited you are going to see Dr Danner. He’s such a wonderful doctor, I just know he can help you. Are you in the Migraine Strong facebook group? Please let me know how you make out. I’m always interested to hear other people’s experiences.
      Best,
      Jenn

  • Tat

    Hi there, thanks for posting this! Are you on a preventative daily medication? I found this is the only thing that has remotely helped as I couldn’t work out what my food triggers are!

    • Migraine Strong

      Hey There,
      Yes! I’m on 20mg nortriptyline. I agree finding triggers would be nearly impossible without getting 24/7 symptoms calmed down. I recently posted my entire treatment plan. Search our site for “treatment plan” and you’ll find it. Be well! 😘

  • Merc Shelly

    Thank you so much for taking the time to write such a detailed account of your journey from symptoms to diagnosis . I have many but not all of the above , enough to know that I too was told I had BPPV but I have always felt it’s Migraine ( Vestibular )
    After reading your information I realise we all have to keep on doing all the good clean living we can to get the better of it affecting our daily lives which is not always easy ( love my cuppa and a glass of white ) but it can make a huge difference the more you try . I’m also terrible at getting to bed early .
    Really appreciate you sharing . Worth staying on the dimly lit screen read and bilateral ringing ears 😏🤣. Well done 👍

    • Migraine Strong

      Thank you so much Shelly, You’re definitely right, clean living is the way to go, but I love my morning cup of coffee too so I understand how hard it can be. I will say now that my symptoms are well controlled I often get away with it so there’s hope!
      Best,
      Jenn

  • Sean

    Hi, Jennifer. I am pretty relieved to read your article, because for the past 4 months I have been plagued with nystagmus and dizziness. Rarely ever have headaches, but I’ve been freaking out that maybe I have MS or something worse, but I think I have nearly all the symptoms you mentioned. I was diagnosed last week with vestibular migraines and I hope that’s what it actually is and not something worse. My mouth, tongue and teeth on one side hurt when I eat sometimes and it can be very painful for hours sometimes. I thought it was TMJ but now I’m thinking it might be related to the migraines. I was curious about the ticks and twitches you mentioned. When you say twitches, do you mean muscle twitches? Because I’ve had a few of those lately.

    • Migraine Strong

      Hi Sean,
      Yes, exactly…muscle twitches. I also get occasional one sided jaw, tongue and teeth pain. Sometimes so bad it’s difficult to talk and to eat. The good news is once you begin to treat migraine, it goes away. Progress to recover is slow, but it 100% happens. Work your treatment plan set up by your doctor and make the necessary lifestyle changes like diet, supplements, sleep and movement and you will begin to improve. You can review my treatment plan by searching the migraine strong site for recovery plan. Hang in there and stay positive. You WILL feel better!
      I wish you the best,
      Jenn

  • Stacey Grehan

    Hi i suffered this two years ago was diagnose with labyrinths had 24 7 dizzines for two years it eventually died down and we decided to have a 2nd baby everything was going great untill she turned four months and boom i am back to square one 24 7 dizziness in hell again. I am so bad i cant function. Terrified it will take two years to go again.

  • Alexis

    I’m so thankful to have found your post. I’ve suffered from dizziness for years; however, the past six or so months, it’s gotten so much worse. I have the rocking feeling when sitting still, body jolts, pressure in my temples. I went to the ENT and had the test done for my inner ear. It came back normal, however, something with the way my eyes reacted came back abnormal. Sent me to a neurologist for vestibular migraines. He said my symptoms didn’t sound like vestibular migraines. Sent me to get an MRI yesterday to look for lesions (MS) and tumors. I’ve been so upset. I’ll get the results on Monday. Praying they come back normal, and if they do, I’m going to find a new doctor to ask about the vestibular migraines!

  • Geoffrey Sebold

    Hey Jennifer:
    This was amazing to read. Your symptoms have been my life for the last six years. Every description is almost exactly what I’ve been telling my wife And doctors all of this time. In particular how mine were not episodic but would last for months.. every day the same thing. After multiple MRI’s and CAT scans not one of the 6 doctors I met with had any idea what I had. So I just kept dealing with it.
    I Will tell you I was involved with a Mayo Clinic/UCLA study keeping a dairy of symptoms and events for two years. In the end the main Dr. seemed only to be interested in if a pill they had given me alleviated my symptoms or not. He told me my results were not helpful because I did not take the pill immediately after an”episode”. He just didn’t get it.

    I will pass on that in March of this year I began doing yoga after lots of encouragement from my wife. I don’t know if it’s all of the twisting and upside down positions but it has had a tremendously positive effect on my daily life. I’m a sports guy and did this as a last resort not expecting to get VM relief. Curious to hear if anybody else has tried this.
    Hang in there everyone.

  • Danielle

    Hello,

    I am so glad to find this! I have been dealing with these symptoms, but with a lot of head and jaw pain, since December of 2013, and so far all that’s been done is I’ve been put on Topamax and I have Botox done every 12 weeks for the headaches. I am so sick of these symptoms I could freak out. It’s completely interrupted my life (and is on top of a cancer diagnosis I’ve been dealing with since 1994) and I don’t know how much longer I can live like this. But it’s really nice to know that I’m not the only one dealing with this, so thank you. I’m seeing a naturopath in a month, but I’m not sure she can do anything for the VM. There aren’t really any other neurologists in my town, as this is the second office I’ve been to. I have Botox in a few days, I think I’ll schedule a time to talk to the doctor and ask him for more treatment options. I just can’t live like this, especially not with chemotherapy side effects on top of it.

    • Migraine Strong

      Hi Danielle,
      I’m so sorry that you’re still struggling. There is so much more that can be done! Search our site for my vestibular migraine recovery plan to get an idea about the wide range of treatment options I use. Your naturopath should be able to help you with diet and supplements which are so important for VMers. Hang in there. You are definitely not alone.
      XO Jenn

  • ANGELA ADAMS

    Hi – it’s refreshing to find other sufferers going through the same thing. I was diagnosed 7 years ago when, completely out of the blue, everything started spinning and I fell to the floor and started vomiting for 2.5 hours – no headache, no warning, nothing – scared me to death and, like many people, initially I asked my Doctor if I could have a brain tumour – not a clue what was going on inside my head as I had never had a classic migraine and was not a headache person – still aren’t as I very rarely get a headache when I have an “episode”. Hate how it takes over my life – didn’t have anything for 2 years but now they’re back with a vengeance – I get about 10 seconds warning then, bang – dizziness and – if I’m very unlucky – vomiting – life is on hold again. I take Topiramate and also Maxalt Melt 10mg oral lyophilisate which are worth asking your Doc about as, if you know you’ve got an imminent attack coming on, you can take and they often stop it in its tracks – they literally melt on your tongue in 10 seconds and act immediately. However you’re only allowed one pack per month (6 per pack) but better than nothing. I’ve just recently also been given Prochlorperazine to try and stop the vomiting – any other suggestions will be gratefully received. I wish it would go away as quickly as it came but guess that’s just wishful thinking! Ange

  • Karina

    Wow I have many of theses symptoms. When I think about it I missed some throughout the years. I had my first vertigo attack in a November and now I’m 6 months pregnant and the migraines are weekly and last 3-4 days long. I’m miserable and it’s difficult to work! I seen a neurologists and he diagnosed me with migraines and vertigo symptoms without aura. I can’t take the good medications due to pregnancy so it’s been real tough.

  • Jennifer

    Thank you so much for sharing your story! This is exactly what I am going through! I have horrible dizzy spells, nausea, vomiting and migraines. Everyday since it has started 3 weeks ago, I have been dizzy and it has started to impact my vision. I spent a night in the ER while they ran countless neurological tests, and of course all of my MRIs came back fine. I was recommended to follow up with an ENT and that is when vestibular migraines were mentioned. I haven’t officially been diagnosed yet because I have to have one more test run in mid November to rule out an inner ear infection. I’m in the Tampa Bay Area and my husband and I immediately started looking up Doctor Danner. Thank you so much for sharing, I can’t wait to meet with him and start getting the right help!!

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