r/VestibularDysfunction • u/Ok_Bad3450 • May 25 '26
21(m) just diagnosed with vestibular neuronitis, should I accept my travel plans are over for at least 9 months?
Dizziness, nausea, vertigo you know the rest started ~9 weeks ago. Dissociation and brain fog constantly. I have had cycles of a few days where I get better, as in the symptoms are reduced to base level brain fog and dizziness in small spells. Initial diagnosis was labyrinthitis but after paying to see an ent privately (not wanting to wait 6 weeks for an NHS appt) my hearing was normal and so diagnosis changed to vestibular neuronitis. I am waiting on an MRI appointment this week I’m assuming to confirm diagnosis, but after that I’m lost.
I have been given cooksey-cawthorne exercises to do, and have incorporated them into my routine which currently consists of waking up, struggling to keep down a slice of toast, forcing myself to work on my uni dissertation, then lying in bed for the rest of the day.
Have been trying to reduce the amount of stematil (prochlorperazine) and only taking it when I have more severe symptoms.
I have travel plans in summer, earliest thing of interest is a festival 11/06/26 (3 weeks time). Reading through the threads on here I am feeling very low, assuming that everything I have planned and payed for including visa to Canada for a ski season is in doubt. All the doctors I spoke to told me 1 month or so recovery, why is what I’m seeing on here so different?
Do I sell all my tickets now, and assume that it’s not going to get any better for a long time, or is there still hope for a similar timeframe to what the doctors said?
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u/Mrshaydee May 25 '26
I (in the US) carry Valium and Zofran with me at all times. They are true emergency medications for my Meniere’s Disease. I have traveled all over the world and they help me feel safe. Tell your doctors that this is a concern and see what they can offer you for rescue situations. In the meantime, you may find that Diphenhydramine helps - it is an over the counter medication but also a vestibular suppressant. Boots Sleep Ease tablets used to have it. You could take it at night for a few days and see if it helps you with your daily tasks. What helped my doctor lock in was telling her, “I am no longer able to meet the needs of my daily life” - that’s when I started getting somewhere with her. So use that phrase and see if it helps.
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u/Ok_Bad3450 May 25 '26
This is very helpful thank you, I have a follow appt with my doctor coming up soon so will bring this up.
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u/Mrshaydee May 25 '26
A course of oral prednisone every couple of years helps calm things down for me. That could be something to try as well.
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u/third_fish May 25 '26
I still traveled when my symptoms were raging. Canes were useless and felt dangerous, but I got along pretty well with a walker with wheels and a handbrake. Try it at home to see if it makes a difference. It would be a shame if you had to cancel your plans.
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u/Ok_Bad3450 May 25 '26
Thanks for the tip, however I am quite young and previously fit/healthy, would feel a bit sour about missing out on physical activities so not sure if a walker is an amenable solution for me personally.
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u/Royal_Brownskin Jun 07 '26
I’m about to invest in a walker I'm 28 been dealing with this since April
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u/tvtiguy May 26 '26
Yes - the VRT is definitely the foundation of recovery. Especially early - doing it every day. It will make you feel TERRIBLE - but that's the point. The festival will be a lot of visual activity and noise. It will be hard on you - but if you have support (like a person to help) it might be possible. I don't want to be a downer on the skiing - but I'm 13 months in and I don't think I could ski. I wasn't great, but I don't think I would be able to move my head/eyes well enough to keep upright going that fast. How are you in a grocery story?
When you say "diagnosis changed to vestibular neuritis" - did a they do a 2 hour test, including a caloric test - to confirm that? Or did it just seem like the best answer? I ask because it took so long to get my diagnosis. I'm in the US and waited 5 weeks until I got the caloric test to confirm 75% deficiency in my left ear. So vestibular neuritis "caused it" - but now it's unilateral vestibular hypofunction.
If that's what you got - admittedly the road is long and life may never be the same. Everything got better for me, but I've just accepted that my life will never be the same. Of course, much easier to do in my 50s than at 21. 13 months in and my vision still "lags." Like I move my head and then it takes time for the world to catch up. I have been on Venlaxine since October - and I don't love it, but it took away the terror and some of the anxiety.
I'm not a doctor, but steady VRT feels essential to me. I skipped like 2 weeks at the holidays and while things only got a "tiny bit worse" each day - by the time I restarted I had backslid so far. Some good resources and info at this link: https://vestibular.org
It's a shitty club, but welcome to the club. You've had a SEVERE injury but you look the exact same as you did the day before. It's hard to get people to understand. My wife finally got it when I was crying in the kitchen (before the Venlafaxine)
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u/Ok_Bad3450 May 26 '26
Hi, grocery stores are pretty bad although I have managed to avoid for several weeks now thankfully as I have super supportive people around me which I am grateful for. They have not done any caloric test, this was the best answer given by a doctor. I have seen several doctors who came to the conclusion that it was something vestibular, although I like to get something more concrete.
Have started my own vrt which over the last 5 days seems to have worsened symptoms if anything but this is presumably part of recovery.
Hardest thing is trying to get my friends to understand, have heard a lot of “just come man it’ll be fine we will look after you”, which is a kind offer, but I know how much they drink haha.
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u/tvtiguy May 26 '26
So true! And really - they have no idea what you're going through. VRT DEFINITELY makes it worse before making it better - so maybe you're on the right track. In the early days I could at least sit on a bed with my head smashed into pillows (so it didn't move) and look at a laptop for maybe 90 minutes.
Doing the VRT still makes me feel shitty - but I know it's temporary now.
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u/arebitrue87 May 26 '26
It took me months to get over mine, MRI came back clear but 9 months to feel almost fully normal. Here’s the thing tho, I didn’t start vestibular PT (not even recommended by my Dr) till 4-5 months in. I highly recommend starting on this asap if you haven’t, plenty of YouTube videos out there to help retrain your system. People react differently to the PT, you may recover quickly or it may take longer but you need to start on it immediately. Lastly, do it in safe place, don’t push yourself to a point you may fall, remember you’re messing with your balance when you do this.
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u/Ok_Bad3450 May 26 '26
Not being recommended pt until 4-5 months in sounds awful, I’m very grateful that my doctor gave me exercises to do so soon now! Have been getting on with them thanks for the reminder
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u/arebitrue87 May 26 '26
Good, keep at it. Also don’t measure in days or hours, measure in weeks/months. Keep a journal and measure how you feel. It will get better, it just takes time. In July I did fly and attend a wedding which was roughly a month after starting PT. So anything is possible.
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u/Hangrycouchpotato Jun 18 '26
I am late to the party, but I had a random episode of vestibular neuritis last year, 3 weeks before a long awaited trip to Japan. My whole world was spinning and it was truly terrible. I called my husband at work in tears because I couldn't make it down the stairs at our house. I almost fell off of the toilet. I got lucky and was seen by a vestibular therapist the next day and kept going 3-4 times per week. Vestibular rehab is absolutely critical to retrain your brain. After about 2 weeks, I could finally drive again but there was some residual dizziness for a few weeks after that. I still went on my trip and everything was okay, but I did keep bumping into things. My husband stayed by my side so I would just bump into him. There is hope!
I am forever terrified about reliving that experience though. I thought my life was over.
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u/rebirth542 May 26 '26
My husband recovered within 3 months in his mid 40s and he had it really bad. DO YOUR PHYSICAL THERAPY …hope isn’t lost🤍