Hello, VM & PPPD 2yrs and completely lost/confused

New here, let me introduce myself 🤝
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Hello all,

I’m Lotte and 27 years old. I’m so glad to have come across this website, it’s so relieving to have a space to speak and hear from others going through similar times.

I’ll try to explain the last almost two years of my life. At the moment, I’m in a terrible place and really in need of any advice or thoughts as I feel as though everything is worsening. I’m not working again due to all of this.

Sorry for any spelling issues as I use text to speech software

In June 2022, I had a cold and after that a constant “off” feeling of unsteadiness.

By July 2022, I had difficulties with my vision and worse issues with moving, which were all 24/7, if I tried to push through I would either feel too dizzy or unwell with headache/nausea/body aches.

Couldnt read on a screen/computer or physical book, as each time I moved my eyes from word to word, it felt as though I was moving.

Looking at trees swaying, the TV, water running, chopping vegetables or in conversation made me feel more dizzy. If I had a nap, opening my eyes again would make me feel very dizzy and I felt dizzy before I even opened my eyes in the morning.

I had a constant rocking sensation. Moving, walking or turning my head made me feel like I was moving more than I was. Daily “ pushes” where it felt like I was being pushed from the inside of my head and made worse when walking or bending or moving my eyes.

I took g10mg Nortriptyline and Overnight this got rid of the dizziness feeling before I’d opened my eyes.

I started the migraine diet and supplements. I gradually had more normal moments, and went back to work in 2023.

I saw great improvements. Moving around became easier, and I could watch some tv. I still had daily dizziness as a sense of floatiness and not grounded. This was there daily, but the intensity varied throughout the day. I would also sometimes get the “heaviness/uncomfortable” sensation in my eyes if trying to concentrate for too long or too hard. I would feel dizzy after stopping working, but go back to normal after a few hours.

My symptoms always increase before, during and after each menstrual period and ovulation.

I caught Covid in December 2023, and noticed worse dizziness whilst unwell. Since that time, my visual symptoms have flared to the worst ever.

When I try to focus (reading, writing, conversation, or looking at phone) I have an awful heaviness sensation in my eyes and it intensifies and I feel unwell with a light headache/temple pain, nausea.

I have motion sensitivity with either my eyes moving to look at something or something moving in front of me.

At its worst, I cannot focus on anything in the distance or close up, it’s as if my eyes do not let me look there and instantly I look away. Moving around became a bit more difficult.

The past three days, I have had another menstrual period and moving around is very hard. The past few nights when sleeping I have had the dizziness feeling again, which I have not had since starting Nortriptyline.

This is so scary for me, and im terrified that due to the sleeping dizziness returning, it’s all coming back or getting worse.

I feel I had just got some level of normality back and it has been taken away just as quickly. I have a neurologist who thinks it’s VM but mainly PPPD. I’m really confused by all of it and how PPPD can differ to VM with constant symptoms. I’m thinking about increasing the Nortriptyline.

Sorry that this post might be on the long side and if you have made this far thank you.

Lotte

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:robot: Warm Welcome :star2:

Welcome, @Lotte! It’s great to have you here on the forum. Everyone is really friendly and eager to help, so don’t hesitate to reach out with any questions or to share your experiences. If you haven’t already, take a moment to read the Welcome Topic here: Welcome to mvertigo! and the posting guidelines here: Posting Guidelines. We’re here to support you on your journey to feeling better!

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Hi Lotte,
I also like the positive tone of this website. For some reason my symptoms also worsened after Covid. I don’t think Covid was the reason, but it accelerated the condition. And I also have relapses after colds. And similarly to you, I have relapses during my menstrual period. The good news is that I am in peri-menopause, and my menstrual periods are not regular anymore (mostly every 50+ days). I notice that I am much better when I am not in my menstrual period. I have the hope I will be better after menopause. I asked my doctor and he said many of his patients indeed improve after menopause. Crossing fingers that there is hope! I know menopause will bring other challenges, though.

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Hi Maria! Thanks so much for your comment. Sorry to hear you’re also suffering, but glad that it seems to be improving! Have you found anything that helps around your menstrual cycle?

I think I have a long way to go until I reach peri-menopause! :frowning:

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Not really. I use ibuprofen as needed during my menstrual period. We both have the same medicine (10 mg). It increases my resting heart rate so I don’t want to increase the dose. Along with the medicine I walk at least twice a day, I never have alcohol or chocolate, I try to reduce gluten and sugar (the insuline peaks are related to VM). I hydrate with Nuun hydration (water is not enough). After 2 months of hydrating properly I noticed a difference in my standing posture.
And when I am dizzy I use a pencil and follow the direction of the pencil with my eyes (up and down, right and left, far and close to my nose). For some reason this simple exercise helps. That said, I am never 100% but probably 90% which is quite good as my new normal. And sometimes I have relapses for all the things you mentioned above.

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Tim Hain considers hormonal birth control an option for women with persistent VM – if you’re already on it, it can also be a culprit, but thats an avenue worth exploring

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That’s so helpful thank you! I’ve been struggling so much the past few months with this relapse (both symptom wise and mentally), but reassuring to hear that your new normal is 90% - that’s amazing!!

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Thank you, I really appreciate your response! I’m not on any birth control so it could be an option! I wish I could see Tim Hain but I’m in the UK :frowning:

I noticed in your profile that you’re on venlafaxine, if you don’t mind me asking, how are you getting on with it? I think if nortriptyline doesn’t work for this relapse that might be my next option

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venlafaxine works great for me. its not a cure, but i would say has taken me from a daily sufferer to a few times a month, and when i do experience attacks, they are much milder and brief.

I’m not in love with the medication though, it does have some side effects and makes me feel a tad less energetic than I’m used to but its better than daily migraines.

I did have to go up to a dose thats a lot higher than a lot of people use for VM – I’m on 150 mg, which is getting into the therapeutic range for psychiatric disorders. Indeed the efficacy of venlafaxine for all disorders its prescribed for seems to be genetic – some people have a gene mutation that prevents it from being cleared from the brain as fast and for these people it works much better. I assume I am not in that camp because 37.5-75 is what’s normally used for VM and I’m on 150, but it works

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Really appreciate the detailed response and hearing your experience, thank you!!

Totally agree on the role of genetics and medication - this made me think of a video that I listened to by Michael Teixido actually, where he mentions that there’s research into the different symptoms of VM (which are so wide-ranging), and how they might indicate which part of the brain/inner ear is being affected, and therefore enable more targeted therapy with medication. Can only hope that more research will help bring (not only awareness) but also a greater understanding of VM itself

Very glad that you’re doing much better - gives me some hope!! :smiley:

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Michael Teixido is actually my doctor haha

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Oh no way haha! Very lucky, he seems to really care

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Lotte, I found this interview to neurologists in this site. I found it helpful: FAQs answered by Neurologists - #7 by scott I will post it for everyone. Sometimes I google here to find information about specific symptoms and this was very helpful. Check the paragraph below, or read the full Q&A if you have time.

– If a drug is reducing symptoms by 50%, stay with it, give it time and work on lifestyle to knock out the rest. Do not work under the notion that by just finding the right medicine that this will suddenly all vanish. Sometimes switching to a different drug in the same class can give more benefit (SSRI for example). It’s remarkable that even though all of the SSRIs work by the same principle, the results can vary markedly between individual SSRIs. Again, if we hit the 50% mark in symptom reduction then we’ve hit on a good drug. If there’s no effect or very little then we do a lot of switching between meds. The problem remains that there isn’t good data on treatment and it’s mostly empirical (observation, experience, or experiment) and that’s why many doctors have differing opinions and a different experience. It’s dangerous for a doctor to base his treatment based on his experience alone because any single doctor will have limited experience and is usually biased (confirmation bias). What we need are a large series of controlled studies which unfortunately just don’t exist.

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Thank you, @MariaF! That’s so helpful. :blush: