Feeling despondent and frightened.

[Setsuka]

Hello, I’ve read a few stories here and it seems to be a reoccurring theme that doctors dismiss this as anxiety induced after you’ve had an MRI.

My story begins abruptly 5 months ago when I got into bed that night, closed my eyes, and I started feeling like I was swaying and rocking on a boat. The next day I got up and the floor felt like walking on a trampoline! Worst still, I was seeing inanimate objects like the TV or window handle ‘moving.’ Sometimes stretching or shifting side to side.

The symptoms did not abate after a week so I went to the doctors and I was sent to a neurologist who tested me and thought it was anxiety but ordered an MRI just in case.

It came back 10 weeks later clear and I was discharged. So I go back to the doctor and ask to see an ENT, I’ve had genetic hearing loss since I was 17 and I’m now 31 so the meniere’s diagnosis doesn’t fit. I don’t have violent spinning attacks, my rocking and seeing things move is 24/7.

For the past 5 months, I’ve had to fight to get sent to the vestibular clinic to be tested and I’m waiting for that appointment but I’m at my wits end with anxiety and no compassion from my family. I’ve had every eye test, including an OCT and dilation, and they’re fine.

My symptoms are constant and not attacks:

Rocking on a boat feeling, worse with my eyes closed.

Ground feels soft or walking on cottonwood.

Objects moving or shifting when I focus on them. Words and reading is difficult due to words moving.

When I stop walking, the floor zooms out if I look at it like zooming out of your camera.

I feel constant anxiety.

My eyes feel like they’re moving side to side slowly sometimes that’s perhaps nystagmus. I see it more in my periphery vision.

I feel like my head is heavy and disconnected from my body sometimes.

A fullness in my right ear and like it’s trying to turn my head.

They’re the most difficult symptoms but it’s the visual objects moving and floor or wall ‘breathing’ that frightens me the most.

I cannot find anyone with my exact symptoms but it’s obvious from reading the forum that vestibular disorders have a wide variety of symptoms.

I hope I can get into rehabilitation soon but it’s the NHS so god knows how long the wait is.

[sfnative]

Welcome to the club you never wanted to join, Setsuka. Many of us here have been on long journeys seeking competent medical care before finding help. I’m no expert by any means but it was only after finding a neurotologist who specialized in vestibular disorders that I finally began to stabilize. Perhaps if you post where you are located others here can give you some ideas.

Another suggestion is to familiarize yourself with VEDA (the Vestibular Disorders Association. They have a lot of information on their website and you can contact them for advice. They are wonderful.

[KWil87]

Sorry to hear how much you’re struggling.

After a not great experience with the hospital and the GP I took myself off to a Vestibular Physio Therapist which I paid for myself, I don’t know if that’s possible for you but it definitely sped up my diagnosis and gave my GP confidence to start treatment with meds.

I still think I will have more appointments and changes in medication etc in my future but the peace of mind knowing what was going on reduced the stress and anxiety about my symptoms a great deal.

[turnitaround]

I’ve said this before but paying privately initially might eventually pay off as you may get your life back quicker and end up losing less income overall.

You do not want to be sitting around suffering terribly for 6 months unable to work before you even see someone for the first time.

[Setsuka]

You were absolutely right. I went to see a private neurologist who immediately said this sounds like VM and started me off on Amitriptyline and we’re seeing if this helps.

He was totally candid and said this isn’t likely to a miracle cure but I appreciated the honesty. So far, I’m not feeling worse and he did say the medication takes awhile to be effective.

I’ve booked myself in to see a vestibular therapist too so I can learn the brain to compensate better.

[turnitaround]

Great! The other good tip is fight the discomfort and get out of the house as much as possible: especially if you are anxious as going for a walk can really help eliminate anxiety.

(not always possible of course because sometimes you are in the middle of a really bad attack but for many these are intermittent and rare, especially once you are on medication).

[DizzyandConfused]

I’m lucky enough to have 6 weekly phone consultations with an NHS vestibular physio and she prescribes a daily walk as part of my rehab. When my symptoms were at their worst all I wanted to do was sit on the sofa as standing or walking made me feel so unbalanced. I could feel I was on the brink of avoidant behaviour.

However withdrawing from the world is really not helpful and I forced myself to do things that really aggravated my MAV, like cooking, gardening, going to the gym. Its really hard, I’'m not going to lie,but it does help in the long run. This illness takes such a lot away from you,dont let it take away everything.

[stilldizzy]

I relate to almost all of these symptoms at one point or another and have made a lot of progress. I’m really sorry you don’t feel support from your family. This condition can be so incredibly isolating and it’s really hard to feel stuck and alone. You’re doing the right thing to seek out treatment and get started quickly. “Don’t let your work get smaller” and “small victories accumulate” are a couple phrases that keep me patient with this thing. Meditation and medication helped me calm down a lot. I hope the same for you. I’m on ami and it got me back to working full time! Good luck, stay strong, you are not alone, there is something to gain from all this, remind yourself what centers you and gives you balance.

[Setsuka]

Thought I’d do a little update.

So far on Ami, I’m back working. I now can walk around without the trampoline sensation! Which is a small victory I’m celebrating.

I’m still experiencing rocking sensations when I’m lying down or sitting still and my vision is still ‘off.’

Still, I’m up and functional now so hopefully my vision will settle. It’s so odd to see false motion and seeing objects shift or move but I’m kind of bored by it now?