Scared! As all heck!

Hello there,

My name is Mel, I’m 24- and just received my preliminary diagnosis of Vestibular Migraine and Ménière’s Disease.

It still doesn’t really feel real- I’ve always been someone who is active, independent, go-getting. But now I feel like I’ve lost every ounce of energy I once had, and am too afraid to drive anywhere. I am so close to finishing my masters degree, but it is so hard to get to campus. Just the anxiety of wondering if I’ll have a vertigo attack while driving either brings on the vertigo or depletes my energy completely before I even arrive.

Because of the meneires, I also have ”moderate” hearing loss in my right ear and was told I will need a hearing aid soon. Not something I was expecting to deal with before age 60.

Just 6 months ago, I was doing everything I could’ve wanted- working, going to school, being a present friend and partner- and now I feel so fragile, like any wrong move like staying up a little later or having too much peanut butter can just send me into a depressive spinny episode.

My doctor, (Dr.Rauch at MEE) sent me here to see if i identify with the symptoms and stories- and boy I do. Which is lovely to find people who experience this as well, but makes it feel real. Everyone just says “but you’re so young for this!” like I’m not already so upset about that portion of it.

I also struggle with OCD and am on Fluvoxamine, would love to know if people have any experience with the interaction of VM and their SSRIs.

I have MRIs, CT scans, and VMP tests in a few months- but doc suggested trying lifestyle and diet changes first. Goodbye coffee, goodbye delicious cocktails, goodbye occasional salty fast foods.

I’m doing PT and seeing a chiro, which seems to help with short term relief. PT feels like it’s getting somewhere. I have mescaline for when attacks happen, but it’s so disorienting and I feel like it knocks me out for a few days after.

Anyways- thanks for reading. It feels nice to finally not feel like Im crazy or making up symptoms or just flat out lazy now.

3 Likes

Welcome Mel!

Yes you are young, but on the plus side that keeps you fit to heal from this!

This is incredibly surprising. Are you sure it is “Menieres” or are they using that term in place of “Hydrops”?

On what technical test results was Meniere’s diagnosed?

Meniere’s is definitely a middle-aged disease and sometimes I do find the use of this name a little odd.

Some hearing loss with other conditions is not unusual (e.g. MAV or Secondary Hydrops).

Do you have any significant and worsening low frequency hearing loss?

I know your doctor has a great reputation but I would definitely get a second opinion (I got five!).

Now one thing you can be sure of: anxiety is your enemy. This is something you need to get under control and use all means necessary. Sometimes just time with symptoms helps. At some point the unpleasant sensations become just that and after you’ve recovered a few times from attacks, you begin to realise it is not ‘damaging’ you, it is just unpleasant.

Also this: anxiety might be contributing to your condition and keeping you from recovering. Have you sought any professional psychotherapy to help you deal with anxiety?

Ensure you aren’t getting into any avoidance behaviour that might worsen your mental state. Make sure you remain social and see friends as much as possible. Make sure you get out the house and walk amongst nature.

3 Likes

Thank you for your reply!

Yes! - I love therapy, been doing it since I was twelve and have a great therapist and an (okay i guess) psychiatrist.

They diagnosed the menieres after my hearing test, discussing my symptoms (tinnitus, muffled hearing, pressure) the sound fork thing, and looking in my ears? Are there further tests specifically for menieres?

And yes! Low frequency hearing loss!

Thankfully I have a dog that gets me outside 3 times a day, and a supportive partner that takes me out to do fun things to cheer me up- even if Im a grumpy spinny mess. But, my overall mood is still down in the dumps and I am by no means doing as much as I used to.

I have a second appointment in two weeks with another Ontologist, should I also be seeing a neurologist?

1 Like

A neuro-otologist/oto-neurologist or ENT is what you need.

A neurologist is not going to be qualified to deal with ear issues.

If this is progressive, it could be Menieres then. However, if this doesn’t deteriorate I think that’s debatable. You ought to take hearing tests periodically.

1 Like

Yes good to know- The hearing tests were pretty freaky ! I could tell I was missing things.

1 Like

Welcome Mel, I great place to be with others with your condition - whatever that is.

I gave up alcohol and caffeine completely. It’s hard yes - but has been super beneficial for me.

Good luck with it all. You seem to be doing all the right things.

1 Like

Hi Mel!
I can definitely identify with the VM. I was healthy, swimming three times a week, full time job, also in school, raising a pre-teen and this hit me out of nowhere. I had scary vertigo attacks for 5 months, two “stroke-like” episodes, terrified to leave the house, couldn’t drive. Used meclazine and Promethazine to help. I’ve been through multiple doctors and physical therapists and it’s taken about 9 months to put together a good team. I’m not having vertigo now, but it caused “eye-brain exhaustion “ problems. I’m also struggling with “classic “ migraines instead of vertigo.

I’m working with my PT on getting back my ability for screen and reading (print) tolerance. I am having “classic” migraines now. But mine is an extreme case.
But my PT said exercise, grounding (things like meditation and yoga), healthy eating (including figuring out triggerS), and lowering stress (easier said than done) will help once i get out of the acute vertigo episodes. And I have come out of that.

The vertigo won’t last forever I promise.

Mel,

I totally relate with you and your issues driving. I also have driving anxiety, and it’s really difficult to tell where my vestibular symptoms end and my driving anxiety begins. I feel kind of floaty when driving and like I’m still moving when stopped at lights. (I have VM and bilateral hydrops.) I’m seeing a psychologist who basically wants me to drive even when I’m feeling off and gradually increase the distance I drive from home. I try to practice driving daily.

Kim