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:

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Hi, how are you doing these days? I too was diagnosed with VM and pppd. Initially I was given verapamil and I was practically back to normal within a few days. But after 10 months it stopped working all of a sudden. How long did your medication work before stopping?
I’m currently on amitriptyline pristiq verapamil, I continued with it cuz it did seem to have a small effect. Also gabapentin.
Yes it is definitely worse around my period.

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Hi! Sorry to hear you’re struggling. I think Covid caused me medication to no longer be effective. I’ll be posting a longer update now!

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Hello there!

I thought I would update on here again, as it’s been a little while.

I couldn’t cope with the 50mg increase in Effexor - had some side effects that I won’t say but couldn’t handle. So I went back down to 37.5mg.

I started Qulipta not that long ago and have been on 60mg for 5 weeks now. I haven’t noticed any side effects which is good.

I’ve also returned to work gradually and seem to be coping, but part time for now. I have been able to do more, which has been great. I went out for dinner last night, and ate some food.

I’ve woken up this morning feeling the worst in a little while, lots of unsteadiness moving around which is scary. I’m mentally telling myself that it’s due to either my menstrual cycle ending, new food, tiredness or all of those.

The usual thoughts are creeping back in of:

  1. Why does this happen to me/other people like me? It’s unfair. I try to counter this with “that’s life”, have to make the most of it.

  2. What happens if my uptick/feeling better was only temporary? I try to tackle this one by reminding myself to take it day by day.

Argghhh, I just want to live a normal life aged 29 please.

Sending everyone lots of extra love.

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I completely understand your thoughts of why me? I think that whenever I feel bad. I feel like the universe hates me sometimes. But we have to try to make the most of what we’ve got. I’m 36 and have had VM for 14 years now. It’s stolen most of my youth and limited my life inexplicably. I’m truly tired of it and wonder when I will eventually ever feel well enough to live life the way I want to.

Hope you feel better soon. X

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Hi all,

I thought I would update here.

I’ve stayed with the medication I mentioned of low dose Venlafaxine and Atogepant. I actually have had a good couple of months, working, being active.

Anyway, I woke up this morning and the whole world was spinning. I’ve never had this symptom before - if anything, it’s been me spinning rather than the world, if that makes sense.

I tried standing and couldn’t manage it so sat back on the bed. I did have after (what I think is) a panic attack, sweating, nausea etc. which has calmed. I’m feeling not great now, and noticing some moments of the world spinning with certain movements.

I really thought I had cracked my code. I haven’t had this symptom before, and so it doesn’t make sense why it’s come up. Does it mean I’m reverting back? The world spinning feeling can be so intense.

I really thought I was doing better.

Spirits are low.

Sending love.

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There’s a finite set of symptoms. Eventually you will have had them all and they will not be so disturbing as you will become used to them.

Remember they are little more than uncomfortable sensations.

(But can be very disruptive if they prevent you working or enjoying things)

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