The Night That Changed My Life
On a 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.
What is Benign Paroxysmal Positional Vertigo BPPV
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 where they don’t belong and send false signals of movement to your brain resulting in spinning. I was unable to get in quickly to see my primary care physician so I made an appointment with a nearby ENT.
Does the Epley maneuver help vestibular migraine?
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 Vestibular Migraine 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.
Visual vertigo
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. I had what’s called, visual vertigo.
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.
Ear pressure and tinnitus
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 and pain from natural light and from noise. Normal volume sounds felt excruciating. Hearing loud sounds would trigger that startling dropping sensation.
My neurological system felt like it was going haywire. I had constant ticks and twitches in my head, eyes, lips, face, hands and legs. And 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 that even talking felt like an effort.
Migraine positional vertigo
Even though I did not have BPPV, 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 motion I was feeling.
I tried SO hard to hide the extent of how bad I was feeling from my friends, family and my fiance’ 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. I needed an answer. What I would have done for a cure for vestibular migraine, even though I didn’t even know yet that I had it!
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 test results confirming vestibular dysfunction, they still 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 strategy or passed me on to the next specialist, I had no effective treatment and I continued to suffer with no vestibular migraine cure.
How long does it take to get a vestibular migraine diagnosis?
It took 3 months, 5 doctors, 4 faulty diagnoses and a load of uncomfortable procedures to finally receive an accurate diagnosis and effective treatment plan.
Due to constant nausea, I lost 17 lbs. while I waited for diagnosis. At 100 lbs. on a good day before diagnosis, that was nearly 20% of my body weight!
FMLA job protection runs out after 3 months. My vestibular migraine diagnosis took so long, I nearly lost my job. Doctors said scary things during that 3 months of waiting. 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.
What kind of doctor diagnoses vestibular migraine?
Finally, after a round of antiviral medication didn’t help me an ENT 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.
What is vestibular 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 like 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 Vestibular Migraine Treatment Plan
My treatment plan includes three well outlined strategies: a preventative plan, an abortive plan and a rescue plan. Most detailed is my preventative plan & 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 , turmeric and B complex. Each one is taken with purpose to help suppress a specific symptom. For example ginger and turmeric help with pain, magnesium glycinate calms the neurological system and B complex & magnesium threonate help to minimize fatigue & brain fog caused by my preventative medication. Prescribing magnesium for migraine is very common among headache specialists as it’s often very helpful.
My abortive plan includes a nasal spray triptan and an anti-nausea medication just like an abortive plan for more typical migraine might include.
My rescue plan includes soothing products and a low dose benzodiazepine that I used short term, in the beginning, as a vestibular suppressant to dampen dizziness. These days I use it only occasionally 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 6 years. I work full time as an Early Intervention Specialist and I live an active life with my sweet guy and our two 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.
Symptoms today include 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 but I have effective treatment for it.
I have overcome debilitating vestibular migraine. If you are reading this, you likely want to know how to cured vestibular migraine. I hope you now have some solid, actionable things you can talk to your doctor about. You can put things in place to calm your migraine brain and take your life back.
Where can I find vestibular migraine support?
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 two of them. I’ve learned that vestibular migraine is a fairly new diagnosis and because of it doctors are not swift in reaching a 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. If I can help you, let me know how. Xo
This article has been refreshed and updated from it’s original published date in 2019.
Photo credit: Late Flower Photography
This post contains affiliate links.
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.
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
Wow! I’ve had VM for 4 years now with tons of the same symptoms- dizziness, ibs, numbness and tingling, neck and chest pain/tightness, ear pressure and pain in cold weather, heat intolerance BUT I also have the generalized muscle twitching on and off which is so scary because I’ve NEVER heard of this as a VM symptom! I need to relax a bit because it’s ramping up my anxiety to the max! Thank you for sharing:)
I suffered for 11 years. I also have MS which doesn’t help. Only last year after the dizziness did not stop after its usual bout of 6 weeks did my wonderful Dr take charge of my problem and diagnose me with Vestibular Migraine. Can I treat it with diet? Exercise is difficult because of MS but not impossible. I’m open to advise. Books?
I’m so sorry Linda. That sounds really tough. You can certainly try to treat with diet and supplements (search my recovery plan on this site), but for me that wasn’t enough to control symptoms. I needed medication as well. It certainly might be enough for you though. Wishing you all the best. Jenn
Thank you so much for posting, you have no idea how relieved I was to hear someone else say they have experienced these same things. I exhibit almost all your same symptoms but with no ‘history’ of migraines. Can I ask you if you found out what the dropping sensation out of nowhere was and WHY it happened? I experience this exact thing and it’s scary as hell to say the least. Would love to know if you have any further info on it. I hope I can find a diagnosis and treatment plan for myself soon. 🙏
Hi Tara, You know I’m not exactly sure why but my treatment plan has helped. I haven’t had that symptom in SO long. I hope you’re on your way to feeling better. <3 Best, Jenn
Thank you so much for posting this Jennifer. I have suffered for the last 4 years with all of these symptoms. Just lately they have severely worsened and my GP has started me on a course of amitryptyline. I have only taken the one, last night before bed but I feel truly dreadful today. I feel wiped out, have a severe headache and just want to go back to sleep. I hope these side effects ease over the coming days. I have an ENT appt 15th September to hopefully rule out meniere’s disease. I will most definitely look at your diet plan and start taking some supplements ASAP. I need all the help I can get because I hate feeling this way. I work full time as a civil servant but I am currently off sick until I get used to the meds. Not for long I hope. I need to start feeling better and get back to work. My GP has said that I may have to try different meds before we get the right combination. I am not looking forward to it as I hate putting chemicals in my body. However, I am hoping that your diet plan and supplements help with these debilitating symptoms. It is comforting to know I am not on my own. I rarely use Facebook and I am not a social media fan but I will try and pluck up the courage to check out your Facebook group. Many thanks once again. Kindest regards Melissa
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!
Thank you for sharing all this information. I continue to be grateful that my VM is a mild form. I say that because my symptoms are not as severe as most of those I read about. Although they are just as debilitating to me.
It took 4 years of progressive suffering before my dizziness got to the point that I couldn’t walk more than a few feet without holding on. I had to beg my doctors to do SOMETHING to help me stop the dizziness before I was referred to a neurotolologist who diagnosed VM exactly 48 hours after I had my first disorientation experience while driving a car. At the time it happened I couldn’t figure out what had happened or why, which confused and scared me even more.
I am very strictly following HYH diet, plus eliminating trigger foods as they occur. I also eat gluten free, low sodium, dairy free, low sugar, no red meat as I have Thallasemia which causes my Ferritin levels to get high and put me at stroke risk.
Finding and reading Victory Over Vestibular Migraines by Dr. Shin C Beh helped me accept my condition and instead of resisting it, learning to work with it. Also, Migraine Strong FB page and Dizzy Cook’s FB page and those who post in those pages have helped me immensely. The key which unlocked the headache portion and some of the dizziness for me came from a post by a gentleman on FB about tannins which I had never heard of. I did extensive research into what they were and what they caused. After discovering what foods had tannins in them and giving all of the unopened food and seasonings in my freezer, refrigerator and pantry to a neighbor. I had given away 7 bags of groceries and looked around and realized I had very little left in the house to eat. So my research then included and still includes what can be substituted for what has been eliminated nutritionally and still have a good taste and texture. I’ve gone from having various symptoms 24/7 to having one month with 21 days symptom free and 3 months prior with 18 days symptom free. So every now and then I try a little stretching as exercise has been out of the question. Each time I do the stretches it sets off a dizzy spell which stops me again. Typical “avoidance behavior” which I read about the first time today. I now realize it’s because the stretches include movements of my head. They help my neck feel more flexible, but I didn’t realize they set off the dizziness. I’m going to have force myself to do the VOR exercises which I hate because they also cause dizziness. Now I realize they are my only hope for relief from the dizziness while they will cause them for a while. Thank you for giving me another answer to work on, even though it is the hardest one for me.
Hi,
Thank you for all the helpful info.
May I ask what preventative medication you are taking? Struggling to find the right one for me.
Thanks.
Hello, I’m on nortriptyline 20mg. Hope you find your right fit soon.
Best, Jenn
Good luck Chris! Sounds like it’s time for a new doctor. It took a year and a half and three neurologists to finally get a (correct) diagnosis of vestibular migraines. Just keep fighting u til you get the care you need. There are no magic bullets but having a neurologist that you trust can make a huge difference
Did you find that you had leg pains too, maybe from deconditioning?
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. 😀
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
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.
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. 😘
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.
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.
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.
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
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
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.
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
Thank you for this information I’ve been going through this for about ten plus years and for some reason don’t know why I’ve been sick with it for about a year non stop. Now years ago it would come and go but now it goes away for maybe a day or two or maybe a week and then right back again non stop dizziness, headache pain can’t see or get out of bed sometimes can barely go to work, weight dropping like I don’t know what, pounds on pounds just lossing weight and Dr don’t know what’s going on. Embarrassed to go around family and friends due to weight loss don’t want the looks of people. I have heart issues I’m only 51 yrs old and I’m scared to really try and take anything without asking my Dr but I just want this to go away or at least ease up some. I’m glad I know I’m not alone cause I’ve tried googling different ways to find if anyone else out in the world was dealing with this and how or if I could find a Dr or ways to help me with it. Thank you a lot for your story if you can see my email address could you please email me so I can talk for more information to share with my Dr to receive the proper help or send me information to the Facebook link to join. Thank you,
now I don’t feel alone or crazy.
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.
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!
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?
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
We are all connected in such an amazing intricate way it took me 30 years you get the right diagnosis. Dr. Beh has many utube discussions Xllnt! Also Dr. Texido has a discussion on Vestibular Migraines. Hopefully more of us can find support and that we’re not going crazy every time I ever said to my medical provider I feel “off” and crawling sensations they’d think I’m a hypochondriac! Dark chocolate and air pressure changes disable me worst windy weather. I live in Southern California we get Santa Anna‘s. The only thing I found that truly supported during the dizzy to vertigo was a benzodiazepine low-dose but they aren’t dispensing them anymore here so I’m on amitriptyline 25 mg which gives me beautiful sleep. The anxiety is always a huge component I have to remind myself I know what I have it sure took a long time finding the right diagnosis often a dual diagnosis. For 30 years I was diagnosed with menieres but I saw a neurologist/EMT he confirmed Vestibular migraine it is indeed like being Alice in wonderland which I was told is a complex part of this apparently the man who wrote the movie was describing his vestibular migraines that says a lot. Dr. Texido Explains particularly women as they get older have fewer headache days and more dizziness which is so true in my case ….this is the best group I found. And Hope together we cope with the facts regarding this most mysterious illness
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!
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
Hi Peggy,
How has the Topamax helped with your chronic vestibular migraine and Meniere’s disease? Has it helped with reducing the attacks?I have been prescribed Topamax just yesterday and was also wondering if you suffered any side effects from Topamax?
Thank you
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.
Hi. How do I get the recipes for the meals
Hi Carole,
If you are referring to the Heal Your Headache diet, the recipes can be found on http://www.thedizzycook.com. All the recipes are migraine safe.
You can also join our closed Facebook group – Migraine Strong for guidance following the diet and join others on their journey.
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
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.
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.
Hi Melissa,
How has the Topamax helped with your chronic vestibular migraine and Meniere’s disease? Has it helped with reducing the attacks?I have been prescribed Topamax just yesterday and was also wondering if you suffered any side effects from Topamax?
Thank you
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!
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.
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
Hi Pauline
I know this is an old post but did you ever find something that worked? I have the same symptoms 🙂
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!
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.
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.
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!
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
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!
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!😎
Hi Sandra I too have just been diagnosed with vestibular migraine and I see you live in the UK and I would love yo talk to you. I live in Oxford. ,Michelle my email address is [email protected]
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.
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! 💪🏻😘
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?
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?
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
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!
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
Hi, my symptoms are exactly the same as yours! Was wondering if you have found relief now and how you’re doing? Truly hope so x.
This is Jenn’s recovery plan that she wrote about. The Vestibular Migraine Recovery Plan that Ended My Daily Dizziness
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!
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! 😘
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 👍
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
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.
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
Thank you. I just had one more question: Did you have muscle jerks at night while going to sleep
Is this symptom improving for you?
Best, Jenn
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.
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!
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.
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.
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
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
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.
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!!
Oh yay Jen! You’re going to love him! Please let me know how you make out. xo Jenn
Hi Admin, I was diagnosed by my neurologist last year with chronic vestibular migraine. I was looking for any help? Richard
Hi Richard. This linked article is a great place to start. https://www.migrainestrong.com/the-vestibular-migraine-recovery-plan-that-ended-my-daily-dizziness/ Also, joining our private facebook group where there are so many others in the same boat can be so helpful. So many great ideas and support are exchanged there!! You can find us here – https://www.facebook.com/groups/MigraineStrong
I’ve had the same symptoms for over 10yrs now I just gotta live with ..stopped meds as was taking way to many …would love to try the diet but if I did I wouldn’t eat as every thing on the list I love …
I understand how you feel. What I do is I just limit the quantities. For example I will have one cup of coffee in the morning and if I have coffee I will not have the other trigger foods during the day. If I want more coffee I would opt for a decaf later. i’m not a drinker so that is really not an issue. I may have an occasional glass of wine maybe once a month if that
Hi All,
Here is my Journey with VM and how I managed it.
It started on April 6th while I was eating my dinner. With first bite my world started spinning around me. While laying i thought to myself that it’s something bad as I never had any other health issue. I’m 29 years old, athletic build with regular exercise routine and I always thought that I can be healthy if I took care of my body until I had my fist vertigo attack. After the attack on April 6, i had dizziness without headache for a week and I thought it’s BPPV. After a week I was normal for two week but the second time it came with dizziness, facial pain and brain fog. That lasted for two week during that time my doctor told me that it’s due to seasonal allergies. I was good for 10 days and came back gain. This time I had unbearable pain in my head and neck, heavey brain fog that made day to day job impossible for me. During this time my doctor transferred me to vestibular physiotherapist, who signed it to VM. Later my neurologist made the same diagnosis. Since May end I had constant dizziness, intense head and neck pain and blurry vision in one eye. My doctor got me on 10 mg amitriptyline. I thought that I will overcome it without medication but I failed and started Amitriptyline on June 18th. I had bad experience with 10 mg so I cut it to 5mg after talking to doctor. In last six month I have managed to come out of it and start to have normal life since last 2 week (hope i stays that way). Following are the things that helped me.
Amitriptyline 5 mg in evening
Magnesium L Threonate (magnetin)- started with 2 capsules but after 2 month I take 1 capsule in morning.
Butterburr and Feverfew – one capsule each, an hour apart after lunch.
Trigger point massage until neck pain went away in september. I had a lot of trigger points in my trapezius. I spent 30 minutes each day for months to get rid of them. To understand the trigger points, there is an e-book of trigger points available free on google. Just Google trigger point massage e book.
I also use hot tub and meditation each day.
I hope it help someone in need.
*Also, talk to your doctor before using any medication”.
A year and 3 month later my VM is in remission. I was diagnosed with VM and prescribed Amitriptyline and Magnetin. Although these medicines worked, I reached remission using a simple $20 device from Amazon called – “Neck and Shoulder Relaxer with Magnetic Therapy Pillowcase”. I wish I had known about it before but I’m thankful that I used it. I’m not sure about the mechanism of action but it got my life back. Hope it help you guys too.
Thank you for your story! I’m struggling with much of the same things you have. I haven’t seen a neurologist yet, but am supposed to see ENT next Monday. She is a little bit familiar with these symptoms being associated with migraines. I have been struggling since August and mine seems to be triggered by barometric pressure changes, but I never really have a normal day any more, nice weather or not. I first went to the ENT because I had dizziness and sinus swelling with my ear feeling like it had water in it and felt like I was being pulled to the right. We had been to the beach a week or so before and thought that was what happened. They looked at my ears and didn’t see any issues as far as vertigo or swimmers ear. I told the doctor it seemed worse when barometric pressure dropped and she immediately related it to migraine problems. I rarely get head aches, but struggle with fullness and pressure in my ears and popping and the dizziness with feeling like I’m always on a boat moving with the waves. She suggested minimum 800mg magnesium daily, vitamin B2, feverfew and butterbur. I’ve been doing a strict regime of these for about month and 1/2 now, may be it’s helping a little, just trying to give it time. I just started a product called migravent, which had a lot of good reviews. I’m praying I can get a good doctor to help me as soon as possible. Can you provide me the meds that have helped you? I want to be prepared when I finally see the neurologist. Also, what exercises do you do for your balance? I have always been active and healthy, rarely get sick and to go from that to feeing very debilitated and unable to do the things I’ve always loved doing is very, very hard and it is a struggle! Any help you can provide would be appreciated.
Hi Todd. I’m so sorry you’re struggling right now. It takes time but it does get better. I am going to attach my treatment plan that I wrote out in detail. Please let me know if you have any questions. As far as exercise. Try not to push yourself too hard right now. Just move every day. Take a walk around the block. Try to shift your gaze back and forth a bit. This can help your brain learn to compensate for the dizziness. As I said just don’t push too much. If you feel dizzier stop. If you haven’t already started look into the Heal Your Headache diet and give that a go too. Here’s my plan. Hope it helps. Reach out with any further questions.
Best, Jenn
https://www.migrainestrong.com/the-vestibular-migraine-recovery-plan-that-ended-my-daily-dizziness/
Hello Author,
In What basis the doctor has diagnosed the Meneiers Disease? Will you have some Hearing Loss?
Does your tinnitus has gone away after starting the Migraine Medication?
Can you have vertigo attacks now, too?
Check out this article that was also written by Jennifer Bragdon. It talks about the connection between vestibular migraine and Meniere’s disease. -eileen
Hi Alexis ! Did you get the results ? I’m going through the same thing . Thanks.
And how are you now?!
I’m doing pretty great! Like I said I am not cured, so I do get occasional attacks…usually around my period or with big weather systems moving through, but I work full time and live my life without thinking about VM constantly. I also have fewer food triggers now that my symptoms are controlled. I have control over it rather than it having control over me like the early days.
Hope you are well too!
Best,
Jenn
Thank you for sharing. About a year and a half ago, I got a headache that was brutal and lasted around ten days. I ended up getting an MRI. My Dr. thought it sounded like a migrant affiliated headache. He gave me sumatriptan. I only took it a few times when the headache started coming back, and it seemed to help it not get worse, but didn’t get rid of it fully. I cut out caffeinated, stopped drinking any alcohol and limited sugar and didn’t have a reoccurrence. Fast forward to about a month ago. All the sudden I got horrible vertigo and couldn’t stand and could barely sit. Only lasted a few minutes but then felt mildly dizzy after….. happened again a few days later followed by mild dizziness. Well, for the next two weeks, I felt OK (minor stuff neck on and off) but no headache at all…. however, constantly dizzy…. mild, could walk but felt like I had drank 2-3 beers…. just a little dizzy/ light headed all the time. Felt best when I could just sleep, but dizzy still. Then, two weeks in, I started getting headaches, nauseous, pressure in head, stiff neck on one side, ears ringing louder, trouble focusing, and even more dizzy. That has lasted two weeks now….. so going on month total. Getting another MRI in 2 days. That said, I found the sumatriptan this evening and took it. Two my surprise, it actually helped somewhat. Still minor w and minor dizziness, but not as bad. I really hadn’t considered I could have migraines without a bad headache an just dizziness but wonder if that could be the issue. Been a challenging month. Hopefully MRI looks good and Dr can point me in right direction. Thanks again for sharing.
I’ve been trying to get a diagnoses for my vertigo as well. Dr thought bpv at first and has me going to physio for it. I won’t say it didn’t help but the vertigo, while less, is still there. Now my main symptoms are visual aura/haziness, fatigué, trouble concentrating, pressure in the head, ears popping and tinnitus as you described, and neck pain. My symptoms have also been ongoing for 3 months now which is why I was skeptical that it could be migraines. I too rarely got migraines before.
I hope you get your answers soon. Treatment is key to feeling better.
Hang in there,
Jenn
How long did you take the benzodiazepines til the dizziness went away, or did it not fully go away. My husbands been dizzy for 6 months and not finding relief or support from his doctors.
My benzo dampened my dizziness but never took it fully away. So for me my benzo was just a crutch I used until my treatment plan kicked in. It took a multi-strategy approach to calm my brain down and fully kick out dizziness that included nortriptyline, diet, supplements, movement, sleep routine etc. Use the search feature on migraine strong to search recovery plan to see my complete treatment plan. Wishing your husband the best of luck. He can improve and recover from this! xo Jenn
Hi, I’ve been dealing with what was initially diagnosed as Vestibular Neuritis or potentially Meneires, has now been classified as Vestibular Migraine since November 2019, 15 plus months as of right now. I experience 24/7 dizziness, swaying feelings, vibrating like a motor, right ear fullness (all of the time) that burns, extreme fatigue and the nightmare of symptoms go on and on. Prior, I’ve taken a gambit of medications, Clonazepam, Nortriptyline being the main two that I was on for a long time, also tried multiple others. Supplements galore too, B12, Magnesium, etc.
Currently, I’ve been taking a monthly injection of Emgality for the actual migraine (which I’ve experienced headaches all of my life and since the dizziness started, once the headache kicked in on top of it, I couldn’t function). I’ve been taking since December, so only 3 injections so far, and I will say it has pretty much reduced my headaches to about 2, maybe 3 a month. But, it has not helped the dizziness. I just visited Mayo Clinic for the first time in the Neurology dept, previously seen 1 other Neurologist and 3 or 4 ENTs… and I am now on 250 mg of Depakote nightly for 8 days now. Nurtec also has been provided as an abortive plan, which I took once during a bad headache and real dizzy day (they are all real dizzy, but some way more than others), didn’t help the dizziness though.
I have hopes the new medication will relieve me soon, but as you can imagine, 15 months in, it’s the worst thing I’ve ever been through and I haven’t seen the light at the end of the tunnel yet, not even a glimpse. My life has changed so much for the worst, I have a family, wife and children, I should be enjoying every day, I’m 33 years old, I hope one day I wake up and it’s just gone. Your story gives me hope!
Nick, I am so sorry to hear that you’ve been suffering for so long. I know how hard it is. Know that you can recover too! I know many who have had great success with depakote. Give it a good chance and work your lifestyle changes alongside it. Go all in on the diet, supplements, movement, hydration, sleep routine and intentional calm down activities etc. Lifestyle changes are not forever. Once your brain calms down many things can return as they were before VM. Hang in there. Join Migraine Strong and Vestibular Migraine Community for support as you go. Best, Jenn
I found your story interesting. Particularly that the constant dizziness started directly after the Epley and you felt fine before it. This is the same for me and others I have read about. What is it about the Epley I wonder that might trigger this never ending dizzy cycle in some of us. I’m scared to do it again.
That’s a great question to chat with our doctors about. My doctor did mention that it’s possible for crystals to get caught in an ear canal. That said they say VM dizziness comes from the brain and not the ears & if that’s so the Epley will not work for us as it’s purpose is to reset dislodged crystals. I also have an aversion to it now and don’t think it’s safe for anyone to do without a medical professional present. I hope you start feeling better soon. Best, Jenn
I ended up in the hospital this weekend due to my first episode of vestibular migraine, with symptoms so much like what you describe. I’ve had traditional migraines for 30 years, but this was new and scary in that it came on instantly and was completely debilitating. I couldn’t even get off the floor.
I’m so sorry! I hope our articles help you implement an effective treatment plan and that you get through this quickly! Gentle hugs. <3 Jenn
has anyone been diagnosed with ankylosing spondylitis along with their vm diagnosis?
We have at least one person in our private facebook group with both.
I have migraine headaches and no Dr. seems to help your article was great reading and I want to know how to access the Migraine Strong group in Facebook. When I typed in Migraine Strong it couldn’t find it
Hi Joyce! Here is a direct link for you. https://www.facebook.com/groups/1292105544152830
xo, Jenn
I am mid diagnosis and VM has been suggested. Just read your brilliant blog. I live in the UK and the NHS here has been brilliant- I couldn’t believe it was VM because it’s lasted for a month – but your story has helped me see it can. I have been in bed all this time. Taking a beta-blocker called propranolol which seems to be helping. Have asked to join the FB group. Thank you so much for your sharing your story – it’s been a huge help. God bless you. Rach
Hi Rachel, Thank you so much for reaching out. Hang in there and keep working your treatment plan. It’s gets so much better…I promise. You’ve got this! xo, Jenn
Hi , what neck exercises did you do? I think I have the same issue
Hi Jen, I went to physical therapy where they taught me gentle neck stretches. A lot of neck work is actually arm and shoulder work so I warmed up by using a pully that hangs over a door. Then a series of resistance work with lightweight bands, wall push ups, taking pegs on and off a peg board (hanging on a wall over your head) etc. If you google neck physical therapy exercises you’ll see lots of ideas. If you’re on IG follow the vertigo doctor as well. She’s a great resource. Good luck, Jenn
I have this for about 2 years and getting worse. I have been to my doctors , ent , eye doctors and no one can find a solution . I lost my hearing as well, and just so fed up that I can’t enjoy life as a normal person
I’m so sorry you’re struggling. Know that once you receive proper treatment it gets SO much better. Don’t give up! Have you tried a neurotologist in your area? Or maybe a Telehealth visit with Dr Beh? Hang in there. Join our group for more support. Xo, Jenn
I was diagnosed with VM about 4 years ago….. not as sever as many of you! But still difficult for me. I now have an new strange symptom, no Idea if it has anything to do with VM…… Since getting my first Covid vaccine, I now have internal vibrations! Yup… feels like I’ve been on a vibrating machine . Not external shaking, but internal. I don’t want to scare anyone from gettin the vaccine. No idea if it has anything to do with it…..! But now I’m wondering if it has something to do with VM? It intensifies after any exercise, or even walking around.
My primary doc did bunch of lab work. He says it’s all within normal range.
Any thoughts?
I know just what you mean and have heard many others with VM describe that same internal vibration. I’d keep working on calming your neurological system with daily deep breathing exercises (or any other activity that helps you feel calm) and adding a calming magnesium (like glycinate). Hoping you’re with a doctor knowledgeable in VM who can help you implement an effective treatment plan. xo Jenn
Oh Jennifer what a great find your site is! I had my first attach exactly three weeks ago today, like you I went to bed feeling normal, and after a normal night including some comfort breaks that were perfectly fine it all changed at at 6am when I got up to let the cat out and fell straight back on the bed which was spinning, or was it the room spinning or was it me spinning or was it all of us spinning was my world completely out of control. That’s certainly how it felt. I knew I needed to get to the bathroom urgently, else I’d be the one cleaning the mess, so I crawled almost on my belly, and dragged myself there. I was by then sweating profusely, rivers of it. And I stayed in the bathroom for quite some time before being able to get myself upright by holding onto the wall. I managed to go to work that day. I got a Doctors appointment and was diagnosed with BPPV, and also had the Eplay manoeuvre, and given exercises to do. Three mornings later I had my second attack, it was far worse. But I felt I knew what was going to happen this time. I tried the Doctor again for anti sickness medication and got 5 days worth. I had to spend three days in bed and missed work. Not a happy bunny, I couldn’t tolerate light, noise or many smells, my sense of smell was definitely heightened, flowers smelt like rubbish. After two days of not feeling too bad I had a light meal, just an omelette. The following day I had my third attack. I decided that food must be my trigger, so stopped eating, the only thing that stayed in was melon, but too much melon has another side effect. After my fourth attack I got to see a Doctor, I was determined to be well enough to see a Doctor. I had made a list of attacks, symptoms, food I’d eaten and the time it had taken to recover, I was literally bed bound for four days after my fourth attack. I listed all the things that were different. From this list the Doctor was able to diagnose VM. I was immediately put onto a very low antidepressant and had anti sickness medication as well, I was taken seriously at long last, although for me that’s only been three weeks, but in that time I’d lost just over 18 lbs. I asked about vitamin B & magnesium supplements, my Doctor didn’t think they’d make any difference so I’ve ordered them anyway. I also wear sea bands to help with the dizziness, they really do help. I’m looking forward to exploring your meals advice, it’ll be great to know what I can eat now that chocolate is definitely out! Im a gluten intolerant fungi intolerant pescatarian, so food is tricky at the best of times, eating out is always a nightmare, cheese was always my go to, as is tofu, I’ve seen those in lists of banned food! Argh! Thanks for your great website.
I’m in tears reading this. I’m so debilitated. I don’t know what to do. They just told me yesterday I have VM. It’s been 2 years of suffering. I hope this is right and My life can improve.
Oh my god! This is what just happened to me! Landed in the hospital with violent nystagmus, vomiting, etc.
Had MRI last week.
Neurologist has vestibular migraine on the list of potential suspects
Sounds like I need to get to an ENT as soon as possible
This is all very familiar. I had Meniere’s when I was in my twenties and it has never really left me. I also had regular migraines. I don’t always get the intense dizziness/vertigo now but I am suffering with feeling woozy and off balance at times with nausea. I get visual migraine sometimes and occasional head migraines but not as bad as they used to be. I feel very faint at times and have vasovagal syncope which adds to my woes. Currently waiting for an ENT appointment ! Does this sound like vestibular migraine? Thanks
It does sound very similar to the symptoms I experience. Best of luck at your appointment! -Jenn
Thank you for this information. I was diagnosed with Meniere’s one year ago. I couldn’t tolerate the meds, but have been on the low salt diet (I do about 800 mg/day) for a year. This has stabilized the drop attacks of vertigo, which is great. But I am still dizzy 24/7. Now my ENT says I may also have vestibular migraine and I think he is right. I’m following the HYH diet and read the book – very helpful – and read Dr. Hain’s website. My question is, do you also follow both the low salt diet and the migraine diet? If so, do you have any advice about how to do both? Thanks so much! Lisa
I used to follow HYH VERY closely. Since it really cuts out most processed foods, it will naturally lower your salt intake as well. Now that my VM symptoms are much more controlled and my brain has calmed down, I don’t really have to follow HYH any more. If you can’t take meds do everything in your power to calm your brain down naturally. It should be your goal in life right now. Reduce stimulation, diet, deep breathing, spending time in nature, calming magnesium, hydration etc.
xo Jenn
Hi Jennifer,
Oh my goodness, thank you for sharing you story and your success battling Migraine. Your story is almost identical to mine except my worst vertigo episode happened to me January 3, 2020 on the 101 Freeway in LA at 5:00 am; not the place to be when your world starts spinning uncontrollably! Thankfully I got to the side of the freeway without an accident. it took six months and several doctors (Covid hit in March so seeking treatment and a diagnosis was further delayed and anxiety mounted). But I finally was referred to Dr. Cho at the House Clinic; he was a life saver and diagnosed me with Vestibular Migraine and PPPD. As I look back, I had a history of painful migraines that went undiagnosed for years and I do recall symptoms that were clues that I also had Vestibular Migraine. Almost three years later and thanks to Dr. Cho, two wonderful Vestibular PT, the Dizzy Cook, the Vestibular Dr. and YOU; I am feeling so much better and able to enjoy life again. Baby steps of course. I still can’t drive but working on it. Sleeping on my Left Side is also something I may never do again as that triggers vertigo for me. Thank you again for all you do and for being such a wonderful support to other VM Warriors! God bless you.
Thank you for your posting your essay! It was so fortuitous that it appeared on-line. I came down with vestibular migraine sudden onset in March 2019, and your essay was coincidentally first posted I think a couple weeks before. A lot of what you wrote resonated with me. I was misdiagnosed a lot early. One neurologist said he was “100% confident it wasn’t vestibular migraine.” Noticing the similarities of my symptoms with yours helped me to continue to seek out a diagnosis for my atypical case of 24/7 dizziness. (I came across your essay in a google search the second month of my dizziness and highlighted the many symptoms that matched mine.)
Once I was able to define the scope of the problem I was on the start towards recovery.
Three and a half years later, I am still left with extreme sensitivity to fluorescent lighting all the time. It’s the one condition that can still trigger my dizziness. Is there any narrative you’ve heard of why the brain could suddenly be altered in a way to suddenly have more pronounced photophobia? (I had lifelong regular migraines and motion sickness though no particular issues with fluorescent lighting before. Do neurologists have any hypothesis on what could cause sudden onset of the condition (often around the age of 40)? And a lingering photophobia?
I know fluorescent lighting is a general migraine sensitivity, but it’s like something in my brain changed particularly in March 2019.
Thanks!
Hi John, I’m so happy to hear it’s helped you. It’s tough to put all your private suffering out for others to read, but you are the reason I did it! I truly believe the diagnosis criteria for VM needs to change as MANY of us struggle with 24/7 symptoms at disease onset and unfortunately this throws a lot of doctors off. Anyway, to get back to your question, my own theory (so this is not meant as medical advice) is that our brains learn to compensate by placing more weight on information received from our eyes. I’m sure you’re aware our brains determine where we are in space from the information received from our vision (what we see), proprioception (what we feel and our vestibular system (our inner ear). Because (when we’re dizzy) the brain cannot accurately depend on information received from the inner ear it begins to depend more on what we see and feel. This is amazing, but can make our eyes more sensitive to stimulus. Talking with a vestibular rehab therapist to help desensitize may help. Also continue working your treatment plan as the calmer your brain is and the more symptoms are controlled the less sensitive you should be on a daily basis. Wishing you the best of luck. Jenn
Thanks for your very thought provoking reply!
That makes a lot of sense to think about photophobia / chronic dizziness like that and is helping me to conceptualize it. Framing it like that could make exposure therapy potentially more effective. Day to day I weigh how much energy to devote to symptom management versus rehabilitation for the longer term.
The fluorescent lighting in an office environment is extremely difficult for me. Fl-41 glasses like theraspecs help, but I’m left wondering if it slows my adjustment over time to the lighting. I inquired with the manufacturers of Avulux recently and am not convinced about the evidence based support that wearing these types of glasses won’t interfere with my brain’s rehabilitation. (I take at face value that sun glasses may be much worse. Not to mention they don’t help me at all with the flourescent lighting.)
Someone at Avulux wrote me: “…Based on customer feedback, we have not noticed increases in photophobia. Typically, customers who spend too much time in a dark room or wearing dark sunglasses could be chronically dark adapting themselves (therefore making themselves more light sensitive). Wearing glasses like Avulux allows for a fair balance of the least harmful light through, so you’d avoid becoming chronically dark adapted. Since we began selling Avulux in late 2017, we haven’t had any reports of chronic dark adaptation (increased sensitivity to light by wearing the glasses continuously)…”
Anyway, I wonder if there’s something to be said for exposure therapy and trying to increase my tolerance over time and if the Fl-41 glasses or Avulux interfere with that (even if they don’t as much as sun glasses do.) I’ve adopted a routine of always wearing blue light blocking glasses but have been reducing my use of Fl-41 glasses.
Hello,
I have recently been diagnosed with Vestibular Migraine by my neurologist and I am struggling.
First started getting symptoms in September 2019 and have been on a rollercoaster since.
I would do anything to have some support from people that actually understands and are readily available to talk about what I am going through.
VM is miserable and yes, it’s hard to find people that understand. If you are Facebook or Instagram, consider finding us there. You will find lots of support there. It’s not the same as having people in real life to support you, but you will likely find that there are people you can identify with AND perhaps you find some good tools to help you manage your symptoms better. I hope you find relief soon.
Hi Jennifer.
Really glad that I found your page. I have for all most 4 years search for the reason for my ear fullness and the last treatment I tried, was having the ear doctor put in a drain, which only make everything worse. I now understand that it is probably my VM that have triggered it. The ear fullness that I experience is not painfull or do anything to my hearing – just make me feel really dizze and can concentrate until I have them unplugged – can you relate to that? Also what medicine are you getting for VM? I’m getting the same as effexor.
Hope you have the time to answer 🙂
Best regards
Gudi