Most people consider migraine to be a terrible headache that lasts a couple of hours and then the person recovers and feels better. But, that’s far from the reality of what it’s like living with migraine disease. Migraine is actually a neurological condition that along with intense head pain causes the brain to have an inappropriate response to stimuli also called triggers. Stimuli include lights, sounds, scents, hormones, weather, sleep disturbances, stress, dehydration, chemicals in foods and in the environment and so much more. These factors are easily ignored by those without migraine, but for those with migraine, it can feel like an assault to our senses and create debilitating symptoms. Migraine brains love consistency, so basically any change can trigger an attack in a hyper-responsive migraine brain. Stay with me as I take you through a bit more about vestibular migraine and then share with you the detailed plan I follow for vestibular migraine recovery.
** This is not medical advice or a substitute for medical advice. The purpose of this article is to share information and my personal experience. Consult your doctor before making any changes to your own treatment plan.
What is Vestibular Migraine?
Vestibular migraine (VM) is a variant and less common form of migraine that adds inappropriate processing of movement to the list of triggers above. Some experience head pain but others with vestibular migraine experience no pain at all. Instead, our movement sensitivity causes vestibular symptoms such as disorientation, visual disturbances, nausea, loss of balance, vertigo and vomiting.
Sensitivity to movement in vestibular migraine includes visual movement like seeing trees swaying, water rippling, cars passing by, busy crowded rooms and movement seen on screens like tablets and phones. It also includes sensitivity to physical movement like walking, riding a bike or riding in a vehicle. Many with VM are so sensitive to movement that even the movement of our own bodies such as shifting your eye gaze to scan a room, bending down to pick something up off the floor or turning your head can cause dizziness. So both movement we see and movement we feel can create symptoms.
#AD
Early Hints of Vestibular Migraine
As stated earlier, when it comes to this variant form of migraine, dizziness and balance symptoms can occur with or without head pain. Because often there is no headache, many people with vestibular migraine have difficulty believing their diagnosis is migraine. However, many with VM have a history of motion sensitivity such as car sickness since childhood which is an early hint about our movement sensitive brains. That was definitely true for me. I had terrible car sickness as a child and it’s lasted into adulthood.
Looking back, my brain has always hinted its sensitivity to movement. In my 20’s I also had a visual vertigo attack, although I didn’t know it was called that. My guy and I were scrolling through websites looking to purchase a new house and a few minutes into it I experienced my first vertigo attack that lasted a few hours. When my doctor was reviewing my history he almost giggled when I told him as if I just made his diagnosis really easy. I had no history of head pain, but I do have a history of sensitivity to movement and so do many others with VM.
Textbooks often define VM attacks as occurring for hours to days and then resolving. That description has not been my experience. When my dizziness hit, it was like a switch flipped. I was dizzy 24 hours a day 7 days a week for months with no break until I received proper treatment. I’ve helped moderate the Facebook group Migraine Strong, for more than three years and have talked with countless people diagnosed with VM over that time. Nearly all of them experienced the same relentless, never-ending dizziness that lasted weeks, months and for some even years before they had any sense of vestibular migraine recovery.
There is good news! Are you ready for it? You CAN recover from relentless dizziness with an effective vestibular migraine treatment plan. Once effective treatment is in place, dizziness begins to fade. Then disease looks more like how it’s outlined in books with dizziness occurring only alongside attacks (with or without pain) that last hours to a few days. There really is so much hope for control over symptoms.
#AD
What are the Common Symptoms of Vestibular Migraine?
People with vestibular migraine may have any combination of the following list of common symptoms. They may or may not have headache pain as a symptom:
- Anxiety
- Ataxia (balance problems and unsteadiness like walking on a boat or floor of marshmallows)
- Blurry vision, bright or blacked out areas of vision
- Brain Fog
- Difficulty turning or tipping head
- Difficulty visually tracking objects
- Dizziness
- Depersonalization or Derealization also called Alice in Wonderland syndrome (which makes it hard to determine where you are in space)
- Extreme sensitivity to movement
- Imbalance
- Lightheadedness or disorientation
- Motion Sickness
- Nausea and vomiting
- Noise sensitivity
- Fluctuating ear pressure or ear fullness changes (with or without hearing loss in your ears)
- Rocking, dropping, tilting and floating sensations
- Sensitivity to light
- Sensitivity to sound
- Sensitivity to scents and fragrance
- Tinnitus (ringing in the ears)
- Vertigo (spinning or whirling sensation) or a sense of movement when you’re not moving at all.
I experienced every symptom above. Many of you know that I was housebound for many months, too dizzy to leave the house. I fought my way out of those daily symptoms and now I work full time and live a full, active life. I get so many questions about what I did to get better that I thought I’d write out my vestibular migraine recovery plan for anyone who’s interested.
My Vestibular Migraine Recovery Goal
The main goal of my treatment plan is to calm down my hyper-responsive, over sensitive and dizzy migraine brain so I can live a normal, active life without having to constantly manage and think about triggers. I firmly believe if you are new to VM your goal in life should be to calm your brain down. I accomplished that through a three-part migraine recovery treatment plan that includes (1) preventive, (2) abortive and (3) rescue strategies. There are MANY pieces to each part. You will see some overlap as some fit into more than one category.
1. My Preventive Plan
Preventive strategies help to fend-off attacks before they start. I use a variety of preventives including diet, supplements and medication. I’m a huge fan of natural treatments so you will see many listed in my plan, but I’m not anti-medication. I need medications as well to help keep my symptoms under control.
I completely understand how frightening it can be to start a preventive medication. No one wants to have to take medication every day and honestly, I didn’t either. But, I needed it to get better. And remember that hyper-responsive brain I mentioned? Those with migraine are often very sensitive to medication and experience many of the possible side effects. So I understand the thought of starting one can be hard. If you’ve tried natural treatments and are still suffering, I encourage you to try a preventive medication in spite of your fear. Many experience no side effects at all while finding something that helps them end their daily symptoms and get their life back.
The Details of My Migraine Recovery Plan for Prevention
Nortriptyline 20mg – I started at 10mg and stayed there for two weeks before bumping to 20mg. I felt NO side effects at 10mg, but the bump from 10-20mg was tough. I had dry mouth and extreme fatigue. My doctor and I decided to stay put there until I completely adjusted to the dose. I’m so happy I waited because after four weeks at 20 mg it started to work! My dizziness began to fade and side effects fell away. I take it at 7 p.m. instead of bedtime to feel less groggy in the morning. Full recovery was very slow, but eventually my daily dizziness was gone.
The Heal Your Headache Diet – There are other migraine diet options to choose from. The Heal Your Headache diet is the one I chose and it helps me. I’m now four years into it so I have added back many foods, but I still follow a personalized version of it today.
Movement – Moving your body is so hard when you’re dizzy, but moving is what helped my brain learn to compensate. I started with short walks and slowly progressed toward long walks. I also swim & do balance strengthening exercise and I strongly encourage you to plan to move everyday. Just be sure you return to baseline within a few minutes of moving. If it takes longer than a few minutes, you’re pushing too hard and doing too much. Be slow and gentle in your recovery.
Hydration – Hydrate, hydrate, hydrate! Your brain needs to be properly hydrated to recover. I am ALWAYS working on this. Why is drinking a daily adequate amount of water so hard?
Regulate Sleep – This is such an underrated vestibular migraine treatment strategy. I make my best effort to go to bed and wake up at the same time every day. Even on the weekends.
Engage in intentional calm down activities – This one sounds silly, but it’s a must. Remember your goal in life is to calm down your hypersensitive brain. So engage in activities that help you feel calm…on purpose! I like spending time in nature, deep breathing exercises, painting, listening to music, yoga and mantras! Avoid getting angry or rushing around…master calmness!
Supplements – Every supplement I take is for a very specific reason to help minimize and manage symptoms. I’ve discussed every supplement I take with my doctor before I take it and you should too.
- Magnesium Glycinate– Is very calming and helps calm down hyper-responsive migraine brains. It also calms the excited pain pathway in the brain. I take Pure Encapsulations brand. In the beginning I took 5 capsules a day, but i’ve been able to lower my dose to 3x a day. Johns Hopkins recommends 800mg of magnesium per day for those with migraine so that gives you lots of room to find the dosage that works best for you.
- Magnesium Threonate– For me, this helps eliminate brain fog and it relieved most of my allodynia. I take Pure Encapsulations brand 1-2 capsules per day.
- Lysine– I work as an Early Intervention Specialist so I walk into preschools daily. Because I still experience ear symptoms and don’t want to aggravate them, I do my best to avoid colds and the flu. I use lysine as an anti-viral. I use Pure Encapsulations brand and take one capsule AM and PM per day.
- Ester C– I take vitamin C to help keep my immune system strong and to help prevent viral infections as well. I use Pure Encapsulations brand and take one capsule per day. Their Ester C is currently out of stock due to covid-19. Here’s a substitute i’m using until it returns.
- Ginger– This helps reduce inflammation & eliminate pain. There is a tiny study showing it’s effectiveness as an abortive as well. I also have a lot of success with turmeric which also helps eliminate pain. I take one Ginger or Turmeric capsule per day.
- Lemon BioFlavonoids– This is such a wonderful supplement that helps turn down the volume of my tinnitus. I take one tablet per day to help reduce tinnitus. If you try it, it MUST be this brand. I’ve only been able to find it online.
- B Complex Plus– Is energizing so be sure to take it in the morning. I take it to ward off fatigue that comes not only with VM, but also with taking nortriptyline. I use Pure Encapsulations brand and take one capsule per day.
2. The Details of My Migraine Recovery Plan for Acute Relief
My biggest advice here is to keep your strategies in a place you can easily grab and use. When we are feeling our worst it’s easy to feel helpless and brain fog can make us forget what we should be reaching for. I keep my abortive strategies in one little bag so I can see what my choices are. The other thing that works for me is hitting it hard from the beginning. I tend to start with my more natural treatments and work up to my big guns, but aborting an attack is most effective when you reach for the hard hitters first.
Abortive strategies eliminate symptoms and attacks after they’ve begun. The following treatments reliably work for me to abort attacks:
Ginger – A natural pain reliever. Sometimes, if I take it at the very first sign of an attack, ginger is all I need to keep it from escalating. I take one capsule every day as a preventative and another at the first sign of an attack.
Magnesium – A natural pain reliever magnesium helps to calm down the excited pain pathway in the brain. I take extra magnesium during attacks to calm down cranky neurons.
Naproxen – This is the prescription medication I reach for most often. Just one 500mg tablet is usually enough to kick out painful attacks. You can also purchase lower dose naproxen as Aleve over the counter.
Reglan – This prescription anti-nausea medication also helps to abort my attacks and relieve the nausea and vomiting that comes with them.
Timolol – Just one drop in each eye can help relieve intense head pressure that sometimes comes along with my attacks.
Zolmitriptan – When I just can’t keep oral medication down, this nasal spray is the medication I reach for to end and abort attacks.
Life Flo Magnesium Chloride Flakes – If you are still dizzy, I cannot stress trying these magnesium flakes hard enough! I bought a bubbly foot spa from Amazon and threw a handful of these flakes into the warm water and soaked my feet for about an hour before bed every evening. This practice always helped to kick out lingering dizziness and it’s so calming. I no longer have to soak my feet every night. But I do still use these flakes during dizzy attacks to help abort them.
3. The Details of My Rescue plan
In Migraine Strong we define rescue medications as any treatment that will not necessarily help prevent or abort an attack, but will make you more comfortable as you move through one. Migraine messes with our bodies and our brains so badly. It can cause a high level of anxiety along with the physical pain and dizziness. Learning comfort measures to use during attacks is crucial. Use whatever it takes to help you cope while you’re waiting for your treatments to work. Here are the things I reach for most often.
Valium – I’ve seen many warnings in Facebook support groups against using benzos. The theory is because it’s a vestibular suppressant your brain won’t learn to compensate. “Dizzy doctor,” Dr. Timothy Hain, states he hasn’t had that experience in his practice. Remember your goal in life is to calm down your dizzy brain. For me, Valium gave it a kick start. A very tiny dose worked. I cut a 2 mg pill into quarters and in the beginning, while I was waiting for my preventative medication to work I took about 2-3 ¼ pills a day for a couple of months. Yet, my brain still learned to compensate. Once I was no longer dizzy, I stopped taking them daily. Now I use Valium solely as a rescue drug to kick out dizzy attacks just a few times a year. This low dose played an important role in my vestibular migraine recovery.
Huggaroo Neck Wrap – If you get tight shoulders and pain in your neck the Huggaroo weighted neck wrap is a must have. It’s weighted to help push your shoulders down so you can relax and the heat feels amazing. I always reach for this one!
Ice – During attacks I need heat on my neck and shoulders, but ice on my head and face. I experience allodynia (painful spots) along with nausea. Ice rollers and wraps like Huggaroo’s cooling face mask save me! Are you getting an image of how cute I look with my head and neck all under wraps during attacks? Ha!
Essential oil – I’m obsessed with essential oil roller balls. This one made for Migraine from Forces of Nature is my favorite (Get 20% off with code: NATUREMS19). I also love Migrasoothe and Migraine stick and use them on my temples and the back of my neck.
Topical Pain Relief – Tiger Balm, Green Goo Pain Relief and Bio Freeze are awesome topical pain relievers as well. I keep J.R. Watkins Pain Relieving Liniment Spray on my desk at work.
CBD – I’ve been using Lord Jones CBD lotion regularly for many months and love the calming and pain relief it provides. Last month I decided to purchase their Royal Oil. It can be used both orally and topically. I prefer to mix it with my favorite moisturizer and use it topically.
Peppermint or Ginger tea – Lately I’ve been getting SO much nausea with attacks. Keeping ginger and peppermint tea on hand helps ease my way through it.
Quease Ease – Also for nausea, this lip balm by Erbaviva is made for pregnant women, but I love it and use it often during attacks. I also like QueaseEASE aromatherapy by Soothing Scents. I wrote a blog about managing nausea as well so check it out if you’d like to learn more tips.
Migraine Glasses – I use Theraspecs outdoor glasses and Migraine Shields glasses to turn down the brightness and soothe light sensitivity.
Massage rollers – Remember that allodynia I mentioned earlier? I am obsessed with massage rollers to help soothe the painful spots and to keep muscles from tightening up.
Earplugs – My favorite are Flare Audio Isolates because they’re comfortable and effective at protecting my ears when they’re noise sensitive. I use the mini size.
Please understand that this is not medical advice or my opinion on what you should be doing or taking to treat your vestibular migraine. Your vestibular migraine recovery plan may look very different from mine. Vestibular migraine treatment is not a one size fits all approach. Underlying medical conditions may prevent you from trying some of the treatments I’ve tried. In addition to that, your doctor may have had success with different treatments he wants you to try. Your doctors 100% know more than I do about what’s best for YOU. Listen to their advice and be open to trying their suggestions.
My treatment is also ever-changing. I am constantly tweaking things to get my best symptom control. So understand, this is just what’s working for me right now, in this moment. I’ve changed it many times over the last four years and I’m sure I’ll update it many more times over the coming years. My wish is that it fills you with confidence that you’re going to get better too. I hope it gives you some new ideas to talk to your doctor about and to help you get control over your own symptoms.
Am I missing a strategy that you can’t imagine living without? Drop me a comment and let me know.
** This is not medical advice or a substitute for medical advice. The purpose of this article is to share information and my personal experience. Consult your doctor before making any changes to your own treatment plan.
Cover photo credit Late Flower Photography.
Hi – great blog. Vestibular sufferer here. Did you have issues working on a laptop or smartphone? That’s my last remaining symptom. Just wondering what helped you the most with that symptom.
Hi Patrick,
I had a LOT of trouble in the beginning with screens. It’s hard to pinpoint what helped the most with my visual symptoms. For me, they were the first to go. Nortriptyline, VERY low dose Valium, HYH diet, magnesium and movement were the top strategies I relied on most in the beginning. I hope that helps and you kick your visual symptoms soon!
Hi Jennifer wow everything you went through is exactly what’s happening to me! Unfortunately I have chronic pain as well so I’m on a lot of meds! I exercise, vestibular exercises, walk, cook, etc but still can’t get rid of this dizziness! I’ve never felt so awful in my whole life but reading that you’re ok gives me hope , thank you so much 🙏😊
Thank you for this very informative article. I want to have my family and friends read it so they can better understand what I go through. I often thought in the beginning that some figured it was all in my head and that I could control it somehow. I too went through a process of discovering what worked best for me, but I’d like to add that my faith in God got me through some of the worst days/nights of my life and I am grateful for His promises in His Word, promises that comforted me and gave me hope and faith that I would see the light at the end of this torturous dark tunnel. I was reading the scripture in James that says we should ask God for wisdom and so I did, many times and He lead me to many of the same discoveries for healing that recount so well in your article. Thank you again for putting down on paper this comprehensive account. I’m sure it will help so many people who suffer in the dark.
Hi Patricia,
Thanks so much for your thoughtful response. I hope you continue to improve.
😘
Wondered if B2 and CoQ10 were ever a part of your routine?
Hi! I did try B2 a couple of times and for some reason it increased my symptoms of rocking and swaying so I ended up letting it go both times I tried. I take BComplex plus with no issue so I’m not sure why I react to straight B2. That said it has good research behind it supporting its use for migraine prevention. So even though it didn’t work for me, I do think everyone should try it to see if it helps. I have CoQ10 and take it occasionally. I’ve just never worked it in as a permanent part of my treatment plan. Xo!
Great post, we have similar bags of tricks, but looking forward to trying some of your recommendations that I have not yet incorporated. I also love muscle rubs and the one that works for me most is Po Sum On oil: https://www.amazon.com/PO-SUM-Medicated-Oil-Milliliter/dp/B00EP6S37M it even lists headache and dizziness from motion sickness as an indication on the container. I have been really surprised by how good it is. I use on shoulders/neck. I learned about it from my acupuncturist (another thing that really helps me: acupuncture). Thanks again for your good and helpful work!
Hi Mylie,
Thanks SO much for your recommendation. I’ll definitely give it a try.
Xo!
Excellent post! Was vestibular/physical therapy part of your recovery?
Hi, By the time I was diagnosed, I was very near the end of my covered FMLA leave. Even though I was still really sick, I wasn’t ready to give up my job and I desperately wanted to get back to work. I discussed vestibular therapy with my doctor. He stated it helps recovery, but would likely make me dizzier as I moved through it. In the end I chose not to go because getting back to work was a priority and I didn’t want to risk increasing dizziness. My doctor is also located an hour from my home so I didn’t have a reliable referral in my area. That said, I did do some on my own. I worked with a physical therapist who taught me core and balance strengthening exercises. I also did a little bit of visual exercises like taking short walks and slowly shifting my eye gaze from left to right…and some scrolling through patterns on the computer. I’ll plan an upcoming post on the balance strengthening exercises I do. Hope you’re feeling well!
That would be good if you could suggest some core and balance strengthening exercises. X
I am grateful for the info. I just started taking Magnesium diluted in water, and sip it throughout the day. After a year of two vertigo “attacks” and constant dizziness, a feeling of disorientation, I feel like I’m on solid ground again! I have felt so very sick, and had brain fog, and fatigue after doing just simple things, that this feels almost too good to be true. I think screens still are a trigger though. Do you have any thoughts about exercise? Just short walks are exhausting.
Hi Cathy, Magnesium is AMAZING! It has helped me so much in my recovery and it’s likely the one supplement i’ll never let go of. I’m so happy it’s giving you relief too! I completely understand how hard just walking can be. In the beginning, I could barely walk to the end of my driveway, but I did it anyway. Eventually I walked one house down…then three houses down…to the end of the street etc. It was exhausting and increased my head pressure terribly while I was doing it, but is definitely one of the things that helped my brain learn to compensate. Our reaction is to be still when we’re dizzy, but moving is so important. Go very slow and don’t be hard on yourself if you can’t go far. That will come with time.
I really appreciate the reply! I tried Vestibular Therapy, but it didn’t seem to help much. What helped was the PT’s giving me words to use about how I was feeling. I still have the feeling of movement at times, even when I’m just sitting, but so much better with the magnesium. I think being on my Ipad too much can be a trigger for me. Again, thanks for your help!!
Hello I’m just 2 weeks into having my first vestibular migraine attack triggered by a chiropractic adjustment and I feel completely lost. I have a 3 year old and just don’t know how I’m even going to do my day to day activities with her. How long do your attacks last? I’m just so afraid this is going to last long. They sent me meclizine but it doesn’t seem to be working.
Meclizine didn’t work for me either. My symptoms were 24/7 for many months. Now they last just a day (sometimes two). I needed the multi-modal treatment plan described here before I started to improve.
Hope that helps, Hang in there. It gets better!
Best, Jenn
Thank you for your helpful article! I have tried so many prevention medicine but didn’t do well with them. Are you still on noritryptaline? I recently tried Botox, I think it helps with head pressure, emgality was not good. I started with noritryptaline but tried at 10 mg for about 2 months. This has been an incredibly tough journey and it’s comforting to know I am not alone though I would not anyone to suffer. I have tried some of the supplements, I have over 100 supply and just feel overwhelmed. I am not able to work arm. Thank you for a little hope that maybe can get this under control. I don’t remember what it feels like to be well
Hi Amber,
Yes, I’m still on nortriptyline. It’s working for me so I have no plans to change that. I hope you also find your right treatment fit. I understand how bad it feels to experience daily symptoms. Hang in there and keep trying new treatments until you find what works for you. 😘
I have vestibular migraines but my symptoms are very different than you’re, I tried most of things you mentioned in but nothing has helped me so except that massage rollers and earplugs. I am still trying different medicine to see which work for me. I have tried different diets and I could not notice it differently, but I am trying to control my triggers and trying to live normal life.
I’m newly diagnosed with VM and have the dizziness at times to even without a headache. I’m looking into all the support groups and info I can find too. I’m on Noretrpline 10mg, so far a week now and supposed to increase to 20 mg. I slept good when I first started taking them and now I wake up several times a night and sweating too. 🙁 I’m also on Fioricet but trying not to take them unless Tylenol won’t work. Been hearing about rebound headaches and I had them for days so trying not to use it unless I have to. I was imitrex at first but my dr said I was taking too much and my ENT switched me. 🙁 just want to feel normal again and not scared to drive or go anywhere alone 😢praying and asking God to heal me.
Hi,
Thanks so much for the info and tips/tricks. Some of them sound very interesting and I need to look into them more – like the lip balm to help the nausea! I never knew there was such a product.
One thing that has worked for me for VM to combat vertigo, or even just when I feel off and gross is to lay face down on a massage table with my face in the cradle. It’s my go to remedy when I feel an attack coming on. The trigeminal nerve in your face/head has been known to be related to migraines. I spend 10-15 minutes twice a day on the massage table as a preventative. When I don’t feel great, I’ll stay there for up to an hour and sometimes even fall asleep. I feel so much better afterward and don’t have to resort to any rescue meds or even take a long time to recover. Getting a massage table may not be practical for a lot of people. I found a product on Amazon recently that is meant to be used at the pool, but it has the exact same effect as my masage table. It’s lightweight, so traveling with it will be perfect, and it adjusts to many different heights/angles so it can work for anyone. https://pronerest.com/
Thank you again for the great info.
Cindy
I was just diagnosed with vestibular migraines. Do you often feel nauseous? Mine is terrible and daily.
Yes,
I was nauseous pretty much all the time. I wrote a blog with tips for that here… https://www.migrainestrong.com/?s=nausea
Hope your begin feeling better soon.
Thank you so very much for your information. I find it the most informative of all articles I read on VM. I give it an A plus👍👍👍
Thanks so much Donna. I hope you’re on the road to recovery!
Best,
Jenn
My husband has such suffered for years with vertigo. He was diagnosed with Ménière’s disease, benign positional vertigo but after reading all of this I think that he has vestibular migraines. He was diagnosed with ankylosing spondylitis about 5 years ago. Has anyone been diagnosed with this?
Hi Alane,
Many people with Meniere’s disease also have vestibular migraine so it’s quite possible. I haven’t heard of ankylosing spondylitis, but I will look into the connection. Search the site for my Drowning in Symptoms blog to see if it sounds similar to your husband’s symptoms. Have your husband seen a neuro-tologist? They’re so great at deciphering between the very similar vestibular conditions. I wish you the best in finding your answers. With answers comes better treatment and control over symptoms. Reach out anytime. Feel free to visit us with any questions you have in our facebook group called migraine strong as well.
Best,
Jenn
Hi Alane,
I have AS and vestibular migraines. No starch diet has helped with pain and stiffness. There’s a Facebook group for people with AS on this diet.
Thank you the information you provided is very interesting and helpful. He has not seen neuro-tologist.
A neurotologist is definitely a specialist to consider. I credit mine for setting up the treatment plan that gave me my life back. I wish him the very best in his recovery.
Xo,
Jenn
Thank you so much for writing this article. I have found it immensely helpful. I was diagnosed this past March with VM and I’ve been at such a loss when an attack hits. I’m a positive person but it is so hard to stay positive when I cant function. I’m starting the food changes today. I stumbled upon the movement portion on accident. I swear the more I walk the better I feel. Thanks again and best wishes to you on your VM management.
Hi Jen,
I 100% agree, the more I walk the better I feel too so there is definitely something to that. Keep working your treatment plan, your brain will calm down, the daily dizziness will go and you will recover. Hang in there. Wishing you well.
Best,
Jenn
Hi there, I am currently going through testing with a Neurologist to determine if this is what I have. Looking into it more online I started to think this didn’t sound like me because the literature says the vertigo lasts up to a few days and I have felt constant symptoms for over a month now. It is reassuring to hear that others have had constant dizziness and vertigo like I am. It is frustrating to deal with and I was worried how it would impact the rest of my life (I am only 23), but after reading your article I am really hopeful that I will be able to manage my symptoms for the rest of my life!
I’m so happy to hear that it fills you with hope. You can and WILL recover too! Fight for accurate diagnosis and work your treatment plan. Hang in there!
Best, Jenn
I am currently being seen by a neurologist for what we think may be VM. I have been dizzy and nauseated daily since early June. I had a migraine with visual aura in early June as well, but only a few minor headaches since. My only differing symptom is periodic limb tingling/numbness in my hands & arms. The feeling tends to worsen as my dizziness worsens, which is worst when I drive and when I do computer work. I also had an MRI completed that presented with a small brain lesion. Curious if you ever experienced the limb issue? And/or if you’ve ever had an MRI completed? I am on week 2 of Nortriptyline (first week at 10 MG, but second week at 20 MG) and haven’t seen improvement in the dizziness yet…hoping to see even the slightest bit of relief in the coming weeks. This was a wonderful article – thank you for sharing!
Hi Lindsay,
I did have all kinds of ticks and twitches in my hands & limbs and I did have an MRI with normal results. Nortriptyline gave me my life back. I hope it does the same for you, just give it a little more time.
Best,
Jenn
I am seven weeks into a really bad VM attack, and I definitely have had tingling in my hands and feet’s, along with significant pain in my left arm. My MRI showed Cerebellar Tonsillar Ectopia, which sounds like VM is a side dish with that. I don’t see my neurotologist until next week….hoping for more answers and a plan soon, because this attack has been debilitating. This site has been very helpful and encouraging!
Great article, very informative. THanks for taking the time to write it and share it. I am very grateful.
Reading your article gives me hope. My ENT thinks I may have VM, but getting an appointment with a neurologist at the moment is hard with covid. I’ve had constant dizziness, like my brain is slow to catch up with my eyes, for around 18 months, I don’t get actual vertigo or get nauseous. I do have ear fullness and at night my eyes are sensitive to lights. Driving or being a passenger in a car also aggravates my dizziness. I’ve had MRI and balance testing with no outcome. I’ve started taking magnesium threonate only a week or so ago. ENT suggested migraine preventative medication, so back to my gp i go.
Thanks for giving all of us dizzy heads hope.
Hi Cheryl. I have the exact same symptoms as you. I had it 3 years ago and now it’s back since a July. Previously o did PT with a functional neurologist. Lots of eye movement exercises to help my vestibular system adapt.
Acute stress and time in the water seems to affect me
I am Also trying to get in with a neurologist and an ENT (ear fullness). I take supplements regularly but will up the magnesium. I also have a prescription for Imitrex but haven’t tried yet. I’m curious to know what your doctors are thinking….
Reading your article gives me hope. I was just diagnosed today by my ENT. I had Covid and I think Covid is what caused my VM. It has been disheartening not knowing what I was going through or had, but I am determined to have a plan and get better. Did you go to both a holistic and primary care doctor for your treatment plan? Thanks so much for your article.
Hi Tiffany. Having a solid plan is so important to figuring out what helps as well as mindset. I’m glad you have a diagnosis even though it’s not a good one. I only went to traditional doctors for my care but I have done lots and lots of my own research to support all the other things needed to beat back the beast of migraine. I was disappointed to not get more support for non-medical ways of getting better, but many doctors focus on what they know best – diagnostics and meds. I’m ok with that now. I hope you get better quickly and encourage you to read all of Jenn Bragdon’s blogs. Thanks for writing! – Danielle
Tears…..just tears that there might be some relief, something that can help me get my life back outside of my home where I feel safe and most at ease. I used to be out and about, doing stuff and not taking time to think about it. My body is telling me to slow down, to quieten down and take time. I started magnesium a few weeks ago but maybe I need to take more than 250g a day to see any difference. When I read your plan, I will admit to feeling overwhelmed and anxious about all the medication and supplements. I get the walking and I’m so reassured to find out about the fatigue. I find I’m so fatigued that I can’t even talk to people once it hits. I feel so tired, exhausted trying to think and respond. I spent three days visiting my kids and four grandchildren. On normal occasion s I could have played, read, sing and do so much with them but I noticed about two years ago how tired I was beginning to feel and that was a year before the symptoms really hit me. I have spent so much time trying to find out why I am feeling so low. Worried myself sick, tortured my GP to no avail, went private with still no answers. This is the first time that I can relate to what’s presented, the first time I can feel less alone and that maybe I can beat this beast too.
I have an appointment with my GP and I’m not leaving without a referral to a good neurologist.
Thank you so much.
Ita
Hi! Thank you SO much for writing this. I hadn’t had a VM attack since 2016 and it recently returned in full swing after some serious stressors. I was put on a small dose of Effexor but the nausea was too much for me and the doctor took me off it. After 3 days of being on no medication, I was actually 75% better. But the doctor then wanted me on Nortriptyline at a very small dose (5 mg) since I am so sensitive to medications. My dizziness has worsened so far as it’s only been 5 days – I’m wondering if it’s due to neurotransmitter changes and wanted to see if anyone has experienced something similar? Will this improve as my body adjusts to the medication? I am even taking more klonopin to combat the effects of the worsened dizziness. I’m pretty bummed as I am having to take FMLA from work. I’m only in my early 30’s and want to have my life back. Has anyone else experienced something similar or heard of something similar?
Hi S,
Hope you’re doing better since you posted on here! I started taking nortriptyline for my VM in October and it seems to help with my daily headaches but not much change in my dizziness/off-balance symptoms. I do know that when I up my dose it sometimes makes the symptoms worse for a few days. I recently went up to 40mg two weeks ago and just yesterday I started feeling VERY dizzy. Dizzier than I’ve felt in years which is very unnerving. I also hope this is just a re-adjustment of neuro chemistry happening in my brain.
Wondering if you’ve had any relief since your post.
Kelsey
It was so encouraging to read your blog. I have had vestibular migraines for 2 years. I started 10mg of Amitriptyline last week, really hoping it will give me some relief. It’s nice to know there is hope and there are people out there that understand the condition.
Thanks Jennifer for your post,it’s very informative since the doctors put a name on it and tell you to go on your way,almost everything you said,I have,it’s very debilitating, mine started July 24th 2020,I turned my head in the kitchen and the world looked like it turned on it’s side,next-cold sweats,vomiting,loss of balance,weakness,can’t walk,I call it worst hangover times 10,is the only way to explain it to people who haven’t had it,I’ve had about 20 attacks and go to a Dizziness and Balance Institute they saw abnormal nystagmus,and I do eye exercises, I also see a chiropractor cause my neck seems sore with this,my ENT said its VM,I’ve never had anything last this long,constant nausea, dizziness and headaches, I know there’s hope now that I’ve read your article…peace.
Hi all, a VM sufferer here. It’s so reassuring reading the symptoms listed. I was diagnosed with VM 2 years ago and went through a year of a strict neuro physio exercises but decided against taking pills. The neuro physio helped but never completely got rid of it. I’ve been suffering the last few years but it’s hard to explain to my friends what I’m going through. This just gives me hope that there is light at the end of the tunnel. VM has got to me so much i’ve made myself believe it’s something else and had more MRI scans yesterday. Sometimes I feel so depressed as leading a normal life is a struggle. I pray for everyone and hope this will
Go away soon x
My ‘dizzy’ expert doctor insists I have vestibular migraines but I too have resisted being the diagnosis. This all came about after my 2nd child was born and I had a weird persistent adult ear infection (but oddly wasn’t dizzy during infection and the dizziness started a few months later). The weird thing it’s never been all the time but only happens instantly in certain situations, especially highway driving and driving up bridges/inclines/ramps. Never down them. It’s never classic dizziness but a few away, zoned out feeling. Initially I had a lot of tinnitus and falling dreams also but those have gone away 97% of the time. I also had the same feelings when driving on side roads but that has gone away mostly also- I think out of necessity? I can avoid highway driving but had to relearn side roads. I also took klonopin for a couple months, I had to be able to drive to get my kids to school but since being able to drive on side roads again I haven’t really needed klonopin. What’s weird is being on a boat or bike riding is fine! I’ve had so many tests. I am going to try your protocol especially your supplements. I do take magnesium but a smaller dose, and I have found curcumin to help also (tumeric). As a forum moderator have you ever heard of someone with symptoms similar to mine, so situational, and have you heard of anyone being helped by taking everything except the prescription daily meds? I have to get back to my doctors again, have just been avoiding doctors and highways since covid began.
Hi John I had same neck problem. My neck and head was hurting 24×7. Later I found about myofacial trigger point by googling my symptoms and reading about experience of people with migraine that get trigger points. I started working on my body and found that I had trigger points in my trapezius and splenius capitis. I worked on my trigger points using a free ebook on internet (from pthnomegroup). It took me more than 2 month but slowly I got rid of the neck pain. Although I still get the migraine that cause dizziness and headache but my neck pain is very minimal to absent. I hope it help you.
I have had migraine associated vestibular disorder since I was 18 and I am 33 now although my consultant thinks i had it as a small child too as I apparently used to cry and say l was starving (dizzy). I was told there was nothing wrong with me other than anxiety. I finally got formally diagnosed 5 years ago and although much better after medication I still struggle and am have been coming to terms with the fact that because of this disorder I cannot have children. It has made me extremely sad but I got a puppy this year which has eased that sadness. I am really looking forward to trying your suggestions as when I first used to Google my disorder there was nothing about it and I am so happy these days that it is more and more recognised and I come across incredible stories and advice like this. Really looking forward to my huggaroo arriving my neck has been excruciating for years!
Sending you lots of hope and best wishes
Joanna
Hello Patricia, I am also getting comfort, peace and strength from the Lord and His promises while I work through the debilitating vestibular migrane symptoms and this crazy time on earth. I am blessed to have amazing support from my family & friends.while I work toward healing with loads to strategies to manage and implement. I have gleaned more ideas from Jennifer’s story. We shall be healed! Georgia
Tiffany, Covid caused mine too 🙁 How were your doctors? It took me 9 months to get a diagnosis because for months every doctor was telling me I was just anxious. However I imagine that unfortunately is common..
Have you found relief? I have suffered from migraines but not dizziness or spatial issues or eye issues or any of that until covid recently. Looking for some hope and help! Thank you!
So sorry to hear you are struggling after covid. Many of us have had similar issues. This is the article that details out my recovery plan. I hope it helps!! The Vestibular Migraine Recovery Plan that Ended My Daily Dizziness
Very interested in the Lemon Bioflavonoids for my VM related tinnitus but the link is broken?
Thanks for letting us know!! I updated the link. Here it is.
https://www.nutritionexpress.com/bioflavonoids/lemon-bioflavonoid-complex-700-mg-250-quick-release-capsules-21230
Ten years since diagnosis of VM by neurologist. Tried all pharm meds – most did not help. On Mediterranean diet. Four years ago Integrative med Dr suggested trying low dose medical marijuana. It helps with balance problems, sleep and exercise. My headaches are ‘in remission’. Imbalance can still be triggered by long car rides, visual triggers – lights, movement, noise, etc. I avoid too much shopping – use trolley for support. Walking on beach & quiet roads, & cycling is best activity for me.
Hi,
Is there anyone completely recovered from VM? It has been almost a year since I am suffering from this problem. And only a month ago , we diagnosed this is the problem. Earlier me and my family thought it is due to cervical spondylosis.
I am on Flunariine 10 mg (once) , cinnazarine, dimenyhydrinate, meclizine (twice a day) and clonazepam (sos)
One month has passed and i have only felt symptomatic relief. I have also put on weight despite doing regular yoga and walking.
Can someone help if i am on the right track?
Is there a way out of this problem, will these rocking feeling(24/7) , imbalance , pulsating sensations while lying down ever end?
Hi. I am recently diagnosed with Meniere’s disease and VM. I am not doing well and struggling every day. I am so happy I found this website! I am determined to help myself. You mentioned in one of your replies to read Jenn Bragdons articles too. I searched her name but nothing came up. How do I use the website to search for all your articles and Jenn”s? Thank you so much
If you click the About Us button on the website, it will take you to our list of writers page. Scroll down and click on Jennifer’s name and it will bring up a list of her blogs. You can also click the search button and type in a topic you want to cover, vestibular migraine or Meniere’s and it will bring up that article. Good luck!! -eileen
Wow! Such great information thank you so much. I’ve been diagnosed in the past with labyrinthitis and then vestibular migraine, but find it so hard to explain to others just how debilitating and depressing it feels! Now I can get them to read this as I experience many of the same symptoms. It’s given me a bit of much needed strength during a particular difficult episode! 🥰
So happy this article has been helpful! Good luck in your recovery!
Thank you so much for sharing this! You have given me much inspiration and hope. I’ve been dealing with almost the same symptoms for 6 weeks. I’ve reached out to your doctor and hope to feel better soon. Can you share which brand of timolol eye drops you use? Also, it helps me when my husband pushes on my tigger points or knots in my back. Have you experienced this? Have you tried PT or medical massage?
Oh! I’m so happy you reached out to Dr. Danner. He’s wonderful. It takes time, but you definitely will feel better. Timolol is a prescription eyedrop medication. Ask Dr. Danner about them. I did have to see an eye doctor first, but he does prescribe them for me. Hang in there. xo Jenn
How many pills of NORTRIPTYLINe do you take?
I take 20mg (two 10mg capsules) one time daily. xo! Jenn
Hi Jen,
I am a teacher as well and the most heartbreaking thing I am finding is that I can’t be around all the movement, visual stimulation and sound without feeling brain fog, rocking or just all round rubbish. I adored my job before this but haven’t been able to go back for 5 weeks now. How did you deal with the anxiety of going back to work? Did you just slowly get used to it? I’m finding it so hard to see myself working at the moment and it makes me feel so horrible. Any advice?
Hi Rebecca, I’m going to be honest and say going back to work was HARD. So, SO hard! It took me so long to get diagnosed, I had JUST began implementing my treatment plan when my FMLA time ran out. I was still very sick and very dizzy. My ED did allow me to work from home part time for an additional month, but my treatment plan really didn’t begin to work until the 6-8 week mark. So I returned to work sick and it was very hard in the beginning. The good news is it DOES get easier. And I believe going back to work helped me compensate faster. Just be easy on yourself. Pack your meals, bring your medication and supplements to work. Cover your florescent lighting. Bring ear plugs for when it’s too noisy, take ice packs to avoid heat trigger if you have to be outdoors. Get rid of fragrant dry erase markers. Bring peppermint oil to swipe under your nose to avoid fragrance triggers. Invest in a allay lamp for your desk etc. keep me posted on how you make out. Are you on IG or in our Facebook group? Xo, Jenn
In TEARS reading this. How did I stumble upon this blog after 6 years of nearly constant imbalance? I think this is what I have, and I feel like my life is about to change. <3
Fingers crossed for you Michelle. An effective treatment plan is everything! Check out this blog too! https://www.migrainestrong.com/drowning-in-symptoms-how-i-overcame-chronic-vestibular-migraine/
This diagnosis has me really stressed out. Is it possible to get pregnant and have kids with this illness?
Absolutely. The real key is to find a team of doctors (headache specialist and OBGYN) that will work together to help manage your symptoms. Also read http://www.thedizzycook.com blog for her journey of vestibular migraine and trying to conceive and pregnancy. Have hope!! It’s possible to have good control and children as well. <3
Hi there!!! I am in Nortriptyline just moved up to 20mg. Are you considering weaning off medication? Do you have VM attacks anymore?
Really good information! I have chronic migraines with a typical facial pain 24/7 ,post gamma knife for benign brain stem tumor. I plan to try some of your treatment. At prent I do botox and depakote, I have better days but still pain 24/7. Thanks for the info.
Oh goodness, I had a family member go through that surgery and it’s not easy. Hope relief comes soon. Hang in there.
Best, Jenn
Hi
i do have verstibular migraine , have pomegranate juice for chronic migraine and vertigo . Try Gingko Biloba , and medicine called SERC. they work by blood supply to inner ear. Try Vit D , calcium or Goat Bone broth food might help. Also there is homeopathy medicines ( Wheezal Wl 41 vertigo drops ) works excellently for migrane and vertigo. Check in ebay or amazon . Take enough water , good sleep and meditate. Avoid using ear buds , loud music , bright lights and Coffee or liquor. Can be due to inflation or water in ears .
https://www.researchgate.net/publication/331219962_Successful_Treatment_of_Chronic_Vertigo_with_Pomegranate_Concentrated_Juice_A_Report_of_Two_Cases
I had a 3 year chronic migraine back starting in 2012 then after trying everything (including botox) it seemed to go away on it’s own with some help from excedrin. I haven’t had too many issues (I have had a concussion but luckily it didn’t trigger migraines again). This allergy season I seem to have several symptoms of VM and am doing my best to combat- I think the initial attack was a couple of weeks ago and symptoms have been off and on. Mostly bad sudden eye blurriness and a dizziness that I think is vertigo plus bouts of nausea. I bought some vitamins (calcium, magnesium, zinc and some vitamin c chewables) to try to help and I hope that works. Today feels especially bad and excedrin didn’t seem to help. I am trying to stay optimistic about the vitamin plan before I try an eye doctor first. I always think all of my symptoms are all in my head.
Have you tried any of the other migraine meds out there – like emgality?
Can I ask why Nortriptyline and not Amytriptyline? Wondering if much difference? Have just bern started on amytriptyline 10 mg with option to increase to 20 mg. Been 5 days and dampened down VM symptoms but not 100% and wonder if ever will. Take supplements as recommended except B2 and B12 inj and not a B complex. Been unable to find Lemon flavonoids in NZ.
This has been such useful information I suffer badly with vm and have the off balance feeling most days I’ve been given betahistine and now trying cystizine will definitely be trying g some of the remedies you have featured thank you.x
Thank you for taking the time to comment. We all hope that you will be feeling like yourself again soon.
Thank you for writing this, I’m going to try all of the above supplements. It really gives me hope that you have recovered, I have been suffering for just over 2 years, its so miserable I feel like my life has been taken away. Please could you tell me how long it took for you to recover and return to work. Thank you so much.
Hi Denise. I began my recovery about 8 weeks after starting treatment. I was very easily triggered back into dizziness though. That slooooowly began to get better and better. I felt fully recovered around the year mark. I know that sounds long, but it creeps in the direction of improvement rather than erosion so it’s manageable. The brain is truly amazing in it’s ability to compensate. It just takes time. Hang in there. You WILL recover too.
The reason why many of you are in limbo with clear blood tests, MRIs, etc. is because your doctors not equipped with the knowledge and research regarding the cause of this issue and your body specifically. The cause of Vestibular Migraines are a Mayo Clinic or John Hopkins caliber. Your local neurologists most likely will slap the VM label on your and send you on your way, but there is often a mechanical cause. For example if you have cervical instability between C1-C3 caused by EDS/Rheumatoid Arthritis/Trauma, this will not show up on a regular MRI. You need a dynamic MRI that takes images of your neck in flexion or extension or even certain angles. Same with your vertebral artery: you need dynamic MRA (magnetic imaging of arteries and veins) to see if your arteries are being compressed during certain angles of your neck or shoulders.