I can’t take it anymore — has anyone recovered from this? (Visual-vestibular overload + migraine)

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Hi everyone,

I’m a 33-year-old mom from the Netherlands, and I’m reaching out because I feel like I’ve hit rock bottom. Since September 2024, three months after giving birth to my daughter, I’ve been suffering from extreme vestibular symptoms that started with migraines but evolved into something I can barely explain anymore.

I’ve been diagnosed with vestibular migraine, and I’m also under investigation for a possible AICA compression, but so far there are no clear answers. I experience intense, lingering vertigo symptoms (sometimes lasting up to 3 days) after even the smallest visual or motion trigger.

Here are some examples of what causes symptoms:
• Watching a moving object, like a swing — I feel dizzy for days.
• Doing the VOR exercise (following a letter on a page with head movement) — even 1 minute leaves me non-functional for a full day.
• Looking down into a pan and stirring — I feel like I’m moving with the spoon.
• Following cleaning movements (wiping or mopping).
• Being a passenger in a car — dizziness starts during the ride and lasts for 3 days.
• Even watching someone jump, or changing my baby’s diaper while standing, can trigger it.
• I cannot look at my phone while lying on my right side.
• I’ve become extremely sensitive to any visual-motor combination (e.g. watching TV and typing at the same time — which I try as an exercise).

At this point, I’m basically housebound. I only go outside to walk my daughter for 30 minutes along a rural bike path. I haven’t been to a public indoor space in almost a year. I can’t drive, I can’t take my daughter to the petting zoo or the pool. I’m beyond exhausted.

What I’ve tried:
• Flunarizine — this has helped reduce the constant baseline symptoms somewhat, but I still can’t tolerate any movement or visual load. For example, one short car ride will still cause 3 full days of rotational vertigo.
• Nortriptyline — didn’t help.
• Estrogen therapy for hormonal migraine — slight improvement.
• VOR exercises — much too triggering. One minute = one full day of dizziness.
• Visual-motor exposure (TV + typing) — I’m doing this daily in tiny doses, but progress is extremely slow.
• Walking outdoors daily in low-stimulus surroundings.
• Haven’t tried scopolamine (Scopoderm) yet — but open to it.

Vestibular rehabilitation is currently too intense. Even gentle graded exercises trigger days of setback. I need a more tolerable approach, and I’m looking for advice on medication that can help reduce the sensitivity and allow me to function.

I have an appointment with a neurologist soon (Dr. Ding, MUMC), and I want to ask for help — but I feel like I’m drowning.

Please…
• Has anyone had this extreme level of visual-vestibular hypersensitivity?
• Did any medication help?
• Did anything else make a difference?

I’m a mom trying to care for my little girl while disappearing from the world.
I’d be deeply grateful for your tips, encouragement, or story.

Thank you for reading.

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Hello and a very warm welcome to the forum! :blush: You’re in the right place, and I want to assure you that everyone here is really friendly, supportive, and eager to help. Many members have gone through similar struggles and are here to share tips, encouragement, and understanding.

If you haven’t already, I highly recommend reading the Welcome Topic here: Welcome to mvertigo!. It’s a great starting point to get familiar with the community and what to expect. Also, please check out the posting guidelines here: Please read this before posting to help you navigate the forum smoothly.

You’re not alone in this, and many have found hope and new strategies through sharing their stories and experiences. We’re all in this together, and I hope you find some comfort and useful advice here.

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Welcome @Ano

To your main question: people who have recovered sufficiently don’t tend to hang around the forum in order to respond but have a look at Success Stories & Positivity :dove:.

The medications definitely help. Lots of experiences here in Medication :pill:. Unfortunately it’s a real game of trial & error to find the one that works for you best.

The site is really useful. Hope it helps you! Hang in there. There is loads of hope! :dove:

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Yes, I’ve been there – I’ve gone from disabled to nearly normal. With proper medical care you will too, although it can take a lot of time to find the right combination of medications, therapies and lifestyle changes to get there.

I found vestibular therapy helpful but like you couldn’t tolerate it until my symptoms were under better control with medication. I eventually went through vision therapy, too, after I had new lenses with prisms prescribed.

For me it was a long journey but with a strong medical team I slowly got my life back. I’m glad you have an appointment with a neurologist which will hopefully begin your healing journey. Ideally this provider specializes in vestibular disorders – not all neurologists do. If you’re not satisfied keep looking for someone who understands the challenges of treating VM. Before your appointment spend a few minutes looking at Dr.Timothy Hain’s webpage on VM, which includes medications he recommends – he’s considered a top researcher and practitioner internationally. Vestibular Migraine

Let us know how it goes and don’t give up hope. It WILL get better, my friend.

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Thank you so much. What kind of medicine did help for you? I tried already so much. I dont believe that it gets better anymore. I did VOR exercise, but when i did it for 1 min. I already where sick :smiling_face_with_tear:

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Topiramate, an anti-seizure medication, works for me. I also started Venlaxafine (Effexor) recently but I’m not sure it’s doing much. I’ve tried several other meds but Topiramate is the one that keeps the extreme vertigo under control. I also take a triptan, Nurtec and clonazepam as rescue meds. Everyone is different - unfortunately it’s a trial-and-error situation. I also have to keep a regular sleep and meal schedule, avoid loud, brightly lit environments and walk daily. I no longer drink alcohol because it aggravates my symptoms. No caffeine either. Many people benefit from migraine diets and supplements like magnesium - worth a try. Once you get your worst symptoms under control you can gradually try adding other treatments and see what works best for you. Come back here anytime – we’ve all been through it and understand how miserable it can be.

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Hi Ano, I’m not a doctor, but what you’re experiencing sounds hormonal to me. Having a child brings about profound changes to our bodies—it’s almost like going through a kind of shock. I became a mother at 39, and my issues began immediately after delivery with episodes of vertigo. At the time, doctors diagnosed it as anxiety, but I still wonder if it might have been vestibular migraine from the start. I was diagnosed with VM at 49, and now that I am in peri menopause I feel much better.

I’d suggest discussing estrogen therapy with your neurologist. It’s possible that your body is especially sensitive to hormonal treatments. I tried estrogen for three months, and it triggered terrible headaches for me.

Nortriptyline has worked well in my case, but I know it hasn’t been the right fit for you. It’s so important to find a medication that helps regulate your nervous system. That really is the key. Once the nervous system begins to stabilize, everything else tends to improve.

I truly believe your neurologist will help guide you through this. You’re still very young, and with time, your hormones will likely find more balance.

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I will come back to your post, but for now all I can say is study this site, and don’t give up. You will find relief and answers!!

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Effexor 37.5 titrated up 1/3 pill capsule at a time. I take 2/3rds a capsul with some effectiveness. I cannot tolerate any higher. This is the main starter med for Dr. Hain. I also take .5mg klonopin /day as a vestibular suppressant. You will find doctors maybe reluctant to prescribe it early on in your journey to find meds that work. I tried 20+ meds before a doc prescribed it, which finally gave me a higher floor and reduced my “bad days” substantially. I would definitely try other meds first before reaching to the benzo though. My path to them was very extensive.

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I had this happen to me at onset of menopause. The month after my last period, Boom I woke up and my world completely turned upside down. It’s been 5+ years I am suffering. Tried 8 different meds- made symptoms worse. I seem to keep reverting to the TCAs (Nortriptyline/Ami) as that helps. But when it comes to triggers, I am a complete mess. Hang in there. If Nort did not work for you, there is another one- Just try-
Huge connection to hormones!