Has anyone recovered from a vestibular migraine lasting several weeks?

New here, let me introduce myself 🤝
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Hi everyone,

I’d like to introduce myself, but first I’d like to explain why I’m here.

I’m currently feeling very depressed and quite alone because none of my doctors can really tell me what’s going on, and I don’t know anyone who has been through something like this. My neurologist keeps telling me that my course is “not typical”, but after reading some of your posts, I’m starting to think that maybe I’m not as alone as I thought.

What would really help me right now is hearing from people who have experienced something similar. Has anyone else been stuck in a vestibular migraine for weeks? I just need some hope that this can get better and that I’m not the only person going through this.

A little about me:

I’m from Germany and was diagnosed with vestibular migraine about two years ago. During my migraine attacks I would sometimes have dizziness, sometimes not.

About 1.5 years ago, after a very severe migraine attack, everything suddenly escalated. I developed severe spinning vertigo that lasted for days, along with intense nausea and vomiting. I could barely walk because I was so unsteady and kept stumbling.

My neurologist prescribed three days of steroids, which helped a little, but the symptoms didn’t stop. Eventually I ended up in the hospital. Unfortunately, nobody there really knew much about vestibular migraine. After a week I was discharged without any real answers.

For reasons I still don’t understand, the worst symptoms gradually improved after about 2-3 weeks. However, I was left with mild rocking dizziness and a feeling of imbalance for several months before I eventually recovered.

I honestly thought it had been a one-time event.

Unfortunately, about four weeks ago it happened again.

It started with another severe migraine attack and quickly progressed to days of intense dizziness, imbalance, vomiting, and sitting on my bathroom floor for hours because I simply couldn’t stand up.

My neurologist admitted that vestibular migraine isn’t her area of expertise. I kept hoping it would improve on its own like last time, but after three weeks I was admitted to the hospital again.

The neurologists ruled out other neurological causes, did a brain MRI, and eventually told me that they believed this was related to my vestibular migraine—but that I needed to find a specialized dizziness or headache center.

The problem is that here in Germany the waiting time for those clinics is around six months.

At the moment I am improving, but very slowly.

The spinning vertigo is almost completely gone, but I still struggle with imbalance and a constant feeling of disequilibrium, especially in the mornings when I get out of bed.

Another problem is that lying flat on the floor is still difficult. I normally do yoga and core exercises, but whenever I tried lying flat during the first weeks, I would become so unsteady afterwards that I felt like a drunken sailor for a while.

It’s incredibly frustrating because I really need to return to work soon.

I actually tried going back to work last week for two days. I spent a lot of time in front of a computer, but because I currently have a severe dry eye/corneal irritation my vision is blurry, and the visual strain seemed to trigger another setback. It felt like I was almost back at the beginning again.

One more thing that might be relevant:

I had previously been taking Aimovig for migraine prevention. During this current vestibular migraine episode my neurologist switched me to Qulipta (atogepant) because I can’t take beta blockers or antidepressants.

Unfortunately, I developed significant side effects, especially increased dizziness and brain fog, so in hindsight I’m not sure starting a new preventive medication during such an unstable phase was the best idea…?!

My main questions are:

Has anyone else had a vestibular migraine episode that lasted for weeks rather than days?

Did you have setbacks during recovery that eventually improved?

Did anyone experience worse symptoms in the mornings after getting out of bed?

How long did it take before you finally felt like yourself again?

Thank you so much for reading this. I’m really hoping to hear from people who have experienced something similar, because right now I feel incredibly alone with this.

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@Somni, a very warm welcome to the forum! We’re so glad you’ve found us, and I want to assure you that everyone here is incredibly friendly, supportive, and eager to help you through this challenging time. You’re not alone in this, and many members have gone through similar experiences, so you’ll find understanding and encouragement here.

If you haven’t already, I highly recommend reading the Welcome Topic here: Welcome to mvertigo!. It offers helpful information about the forum and how we can best support each other. Also, please take a moment to review the posting guidelines here: Please read this before posting. It helps ensure that everyone’s experience is respectful and constructive.

Feel free to share your story and ask any questions — we’re here for you!

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Welcome! Sorry you are going through this!

I’ll give you my personal take on your questions.

Yes, my episodes after an initial acute event would normally last about two weeks.

Yes, things got better for a while then I’d have an acute attack and be worse for a couple of weeks.

Yes, I seem to recall things were always worse in the morning but improved as the day went on

This was very gradual but also fluctuating. If by symptom free, years. I was dizzy for 3.5 years. If mostly psychologically in a better place maybe a couple of years?

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First of all, thank you so much for your quick reply.
I know that everyone’s journey with vestibular migraine is different, but it already helps so much to hear that I’m not alone with these exhausting symptoms.
Of course, I don’t mean that I’m happy other people have to go through this too! :blush: I genuinely feel sorry for everyone who has to experience it.
But when you start believing you’re the only one with such a long and difficult recovery, it becomes incredibly hard to believe that you’ll eventually get through it.
Just knowing that other people have been where I am now—and that they eventually improved—gives me hope

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Somni - You’re not alone. Like others here, I’ve had a long, difficult journey – up and down, hopeful and despondent. The key, I think, is to find the right doctor to partner with – not easy I know. Be assertive as you search for competent medical care. You will find answers and get better – maybe not all better but much better. If you need information or opinions or a place to complain, you can come here – it’s a safe place.

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Thank you! Today they’re doing some more tests with me, including positional maneuvers and the caloric test (where they put water into your ear), which I know can cause quite intense dizziness. I’m honestly really scared that it might trigger something that makes my dizziness worse afterwards, especially because my vestibular system is so incredibly sensitive at the moment. :disappointed_face:

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Oh yea! I had those done about 10 years ago? I can’t remember when it was, but I remember the tests. The water in the ear test was quite joyful. My doc saved that one for last. I think by the time my doc was done, my Vestibular system was in such an array that it was beyond reacting. I think it was paralyzed. I took a cane so I could get out without falling down and I brought my wife to drive.

My testing lasted almost four hours.

Good luck, and happy testing.

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Oh, great - that’s really reassuring :see_no_evil_monkey::sweat_smile:

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It’s not pleasant but the fact that they’re doing testing is a good sign - it will provide them with more information going forward. You’ll get through it! Let us know how it goes, ok?

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As I’m still in the middle of this vestibular flare, even the positional testing wasn’t much fun… I honestly couldn’t tell whether it was me swaying, the room swaying, or maybe both. :wink: I naturally have very low blood pressure, and apparently I looked so exhausted after the maneuvers that the doctor decided to skip the caloric test today because she was worried I might pass out. ^^ I didn’t have any nystagmus, though, so she still thinks my vestibular migraine is simply flaring up at the moment.

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Somni, You’re definitely not alone. I’ve been dealing with this since August 2019- when first very troubling symptoms started and no doctor had any clue of what it was. If I walked in the house, went from kitchen sink to the fridge, I’d get motion sick. I had constant nausea. I did not have a single good day. I could barely speak, only tears would come from my eyes- it completely took me like a wave. I was miserable, could not function, did not know what was happening to me.

Little by little time went by, I wrote my main symptoms on a sheet of paper and brought it to different doctors to ask, to seek answers, to seek treatment, to seek any medicine that could help me. 15 months into it, a caring friend, took me to her doctor who was not even a neurologist, and he was the first one to say this was VM/MAV. Doing my own search on the internet, listing my symptoms, brought me to this site several times. Then I finally joined. Here I met a community of people who were going through some very tough days just like me. Here I could put a name to things, I could express my condition, I could learn from reading other’s experiences…as difficult as looking at the screens for me. I’ve just gotten used to being in and out of being sick all day long. Trying to avoid my triggers of motion, sounds, lights, screens, smells…is almost impossible as they are life! Photophobia and phonophobia are very challenging to deal with.

In the beginning I went through a lot of BPPV screening, tests, just like you. I hope you find good doctors who are willing to help you. You may be the lucky one to find the meds that will work for you. Some of my symptoms like rocking, swaying, spinning in head are not there anymore. However sound sensitivity, screens, and driving result in bad dizzy headaches for me and are really challenging.

I will be thinking of you. I think all of us here know how difficult this condition is to diagnose and then difficult to treat as everyone responds differently to the different medications. I pray they find some answers for you and help you get to the right treatment. You are in my thoughts Somni. :heart:

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Somni, I am so sorry to hear how discouraged you are. Every case is different, but I believe that, with the right doctor and the right treatment, you will eventually feel better.

While you are waiting to see the appropriate specialist, you might consider trying a few things that helped me:

  1. Avoid lying on the floor. If you do yoga, try doing exercises that can be performed standing up. In my case, lying down seemed to trigger positional vertigo.

  2. Consider computer glasses and reducing artificial light exposure. See if computer glasses help with blue-light sensitivity. It may also help to work in an environment with softer lighting. At home, I work in the basement, and at the office, I use two lamps with gentle lighting instead of bright overhead lights. Also, ask your doctor whether your eye condition could be contributing to your symptoms or making them worse.

  3. Try wearing sunglasses indoors. Sometimes, imbalance and dizziness can be related to light sensitivity. Blocking some of the light may help you feel more comfortable.

  4. Hydrate with more than just water. Here in the U.S.A, I use Nuun hydration tablets, which contain electrolytes and minerals. They seemed to help me feel more stable, which in turn improved my balance.

These are only temporary suggestions until you can see a good doctor and receive proper medical guidance.

In general, the things that helped me the most were medication (Nortriptyline, which is an antidepressant), no longer having menstrual periods, walking at least 50 minutes every day, and doing strength training exercises (only standing) because it helped me to improve my blood sugar levels, and for some reason, VM is related to insulin resistance.

I hope you find some answers soon and start feeling better. Don’t lose hope. Things can improve once you find the right treatment.

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@Suffering

Thank you so much for your kind and encouraging words! :heart:

I’ve actually been diagnosed with vestibular migraine for about two years now. Until recently, I had learned to manage it reasonably well. Some days were better, some were worse, and I often experienced dizziness before or during a migraine attack. Over time, I more or less accepted that dizziness was simply going to be part of my life.

Unfortunately, I can’t tolerate antidepressants, so for the past year I’ve been using Aimovig. It reduced my migraine attacks quite a bit, and overall I was coping fairly well.

What I just can’t understand is why this current episode has lasted for more than four weeks without settling down.

The doctors have explained that a lot of things are probably happening at the same time: an ongoing heatwave, poor sleep, days of continuous dizziness, the anxiety that naturally comes with it, and the stress of trying to keep up with work while feeling like my colleagues are slowly getting frustrated with me—as if I had chosen this situation.

Right in the middle of this episode, we also changed my preventive medication to 60 mg of Aquipta (atogepant). Even after four weeks, I was still struggling with side effects, so we’ve now reduced the dose to 10 mg. Since then, I’ve been stuck in my third day of a migraine, and now I’m wondering if maybe this medication just isn’t the right one for me.

Unfortunately, my neurologist isn’t very communicative, and the waiting lists for another neurologist here are around six to eight months.

My family and friends don’t really understand how different this is. They keep saying, “But you’ve had migraines for years—why is this suddenly such a big deal?”

The problem is… this isn’t just a normal migraine anymore.

I’ve been stuck in this miserable episode for over four weeks, trying to keep my life as normal as possible, but it’s incredibly exhausting. Every single morning I wake up feeling unsteady on my feet, and my head feels as if someone dropped a fizzy tablet into a bottle of cola.

I’m really trying to stay positive and be brave, but some days it’s simply harder than others.

I’m incredibly grateful to have found such kind and understanding people here. It means more than you know.

Thank you so much. :heart:

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@MariaF

The problem with avoiding exercises on the floor is that I’ve had multiple back surgeries, and I really need my core-strengthening exercises to keep my back stable. Unfortunately, machines at the gym have never worked well for me—we’ve tried that many times.

Most of my rehabilitation consists of bodyweight exercises to strengthen my core, and they’ve worked really well for years. The downside is that many of them are done lying on my back, and after several weeks without training I can already feel how much weaker and less stable my back has become, which certainly isn’t helping my balance.

I’m also very sensitive to noise and bright lights. The problem is that I work for a government office, so my job involves long hours in front of a computer and constant contact with clients. I really need my job and can’t simply change careers. Up until this episode, I had actually been managing it quite well.

Today I have an appointment with my optician to get glasses, and I’m hoping they’ll reduce some of the strain on my eyes. Although I’m already wondering whether getting used to new glasses will probably make my dizziness worse at first. :wink:

During these four weeks I’ve seen my neurologist, an ENT specialist, the hospital doctors, and an ophthalmologist. They all more or less tell me the same thing: “Yes, we can see that something is going on, but you’re already on migraine preventive treatment, so you’ll just have to wait.”

The problem is… life doesn’t stop while you’re waiting.

I have a job, responsibilities, a dog, and my boyfriend. I can’t put my whole life on hold indefinitely and just wait for things to improve.

It’s all been incredibly exhausting and frustrating, but I’m doing my best to pick myself up and keep going, even though it’s really difficult at the moment.

The support I’ve received here has honestly helped me so much mentally.

Thank you all so much for your kindness, encouragement, and advice. :heart:

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Somni,

I could ditto your words. Correctly said: the anxiety this condition causes, the difficulties trying to work with this condition, the friends and family not understanding what you have and are dealing with- you name it you said it

Plus given that I’ve had this for my 7th year now, how it changes, relapses, sometimes lasts longer than it had previously. For me it’s 24/7 and not a day’s break. If I don’t avoid triggers, it’s murder! And how can I avoid triggers? They are everywhere. A friend visits me and I can’t take the headache from the sound sensitivity that I have to premedicate myself with Migrelief or Ibuprofen so I can get through the visit. It is so so so debilitating. We can’t live in a cave right? So how are we supposed to live with this he-l?

So sorry that you have to deal with this. As I said before I’ve just gotten used to being sick each day. I cannot work in a steady job anymore and I have headaches as in pain headaches and then the vertiginous headaches. Yes, many things can happen at the same time. These recurring heatwaves, lack of sleep, the anxiety they are all so frustrating. I hear you about the neurologists, I am on my 4th one! Yes, waiting lists here are the same: many months to see another one. I would say that go ahead and put your name on the waiting lists of the neurologist you wish to see and meanwhile continue to get the testing done and before you know it time will pass and you will have your appointment with the new one. It’s been the same for me. I saw Neuro #3 for 4 years, and he never made any effort with me. Instead he would scold me for my symptoms! I tried Botox, it made my head completely sensitive and crazy- same as the trigger point injections. The meds made my symptoms worse. It made me think maybe this is not a migraine I’m dealing with- if it were, then why wouldn’t migraine meds work on me? It is exasperating @Somni. I hear you and completely understand what you mean about f and f not understanding. Exactly the same for me. I had headaches since my 20s and only after menopause did the dizzy episodes start. I never knew those headaches were migraines. I worked as a teacher and had excruciating headaches every single day. But when dizziness kicks in, that’s when it starts to reallly take a toll on you because you can’t function in the same way anymore. I hope this miserable episode comes to an end soon for you. I know this seems to be this condition that it keeps changing, some symptoms get better, some remain, and new ones appear. Stay strong. We share with you the feelings of frustration, the feeling isolated and we pray that each of us finds a solution that helps us. :heart:

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Yesterday, for the first time in weeks, I actually snapped at my family and friends…
I understand that this situation is difficult for them too, but they’re definitely not making it any easier by asking me several times a day:
“Why aren’t you feeling better yet?” “Why is it taking so long?” “You’re not able to cope with anything anymore…” “Why don’t you see another doctor?”
Honestly, if I knew why I wasn’t getting better, I think I’d already feel a little better just having an explanation. If I knew why it was taking so long, at least I’d have some answers.
And yes, I know I’m not coping as well as I used to—but please don’t keep reminding me of that. :angry:
Living with this illness is already hard enough. You constantly feel like you’re fighting it on your own because nobody around you can really understand what it’s like or take it away from you. The last thing I need is to be made to feel as if this is somehow my fault or that I’m doing something wrong.
That’s not helpful at all.
I’ve already seen every doctor I could get an appointment with. It’s not as if I’m just sitting here waiting for a solution to magically appear. I’m doing everything I can.
It’s just really painful when the people around you respond with misunderstanding instead of support.
I honestly don’t think I’ve ever said to someone with a long-term illness:
“Why are you still sick?” “Why aren’t you back to normal yet?”
If someone I care about is struggling with a long illness, I’d probably say something like:
“Hang in there. It will get better eventually. I’m here for you.”
I really can’t understand why people react the way they do.

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Yes, exactly. I hear you completely there. People will not understand until they have been hit by the exact same situation. Someone recently said to me “I am horrified by your condition”. Gee thanks! How understanding and empathetic of them and what a kind thing for them to say! We exist and it’s a tough existence indeed and we are all desperately trying to find a solution that might work, another med that might reduce some of our nasty symptoms which prevent us from fully functioning. Something, please. It is hard to live this way. I can’t even enjoy a friend’s visit as their visit and talking hits my head so badly, that I end up taking ibuprofen to diffuse the pain that starts in my head due to the sound sensitivity.

I’m in the United States and think maybe in Europe they might have other medications that could work better for this condition, medications that are not available in the US. Or even alternative therapies?

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Well, I live in Germany, and I can honestly say I’ve seen a huge number of doctors myself, desperately looking for medications or treatments. But to be honest, you seem to be further ahead than we are. We don’t even have forums dedicated to vestibular disorders here. I’ve seen four different neurologists, and not a single one of them was familiar with vestibular migraine.

So yes, there may be other treatment options somewhere in the world, but unfortunately not here in Germany. :disappointed_face:

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It really sucks when your family members just don’t get it. I get it from my wife a lot “Well this has happened before”. But we know when it’s just different. I used to get a HORRIBLE spinning sensation once a year in the spring and then it would calm. I have had 3 now in the past few weeks. It is scaring me and it feels like nobody cares. Just know you are not alone. It helps me to read other people’s stories as well. Good lucj :growing_heart: