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A Depressing but Hopeful Introduction.

Hi. I’m a 23 year old male living in the US. So I’ve had a chronic daily 24/7 vestibular migraine for 3+ years now (really close to 6 years but the pain wasn’t as bad then). Benzos are the only things that help. After taking them intermittently for 4 years (and unknowingly treating my illness), I had been completely off them for 2 years. But, I had been only getting so much sicker everyday. Eventually, one morning I took a benzo- lo and behold, I could be somewhat productive. Now, I’ve been on benzos everyday for close to 1 year now. I do not want to be on them for much longer, only until I get this handled.

I believe I’ve been sick ever since I was a kid. I always had nausea, dizziness, and LPR (Silent Reflux). These symptoms slowly progressed into constant noise and light sensitivity, throbbing pain, and complete fatigue/exhaustion, on top of the previous symptoms getting worse. A year ago I had a sleep study done- it came back as Narcolepsy. I couldn’t believe it so I insisted to have the spinal tap done to diagnose Narcolepsy. It came back negative, so I am officially diagnosed Idiopathic Hypersomnia. Which I am still skeptical about.

Anyways, I think I have an inner ear disorder, or maybe the Silent Reflux (maybe from a Hiatal Hernia) is causing vestibular neuritis. Or, I have a chronic infection in my ear or somewhere in my body because my liver AST and ALT are very low. Migraine medications, diet, and Botox have only helped somewhat, so this is why I’m thinking it’s my ears. And, hopefully the vestibular problems are causing my Idiopathic Hypersomnia so curing that will take care of my sleep (as there is nothing I can do for my sleep issues).

I had a tympanometry test come out strange. My ENT said it was in the normal pressure ranges. Though, I found a Doctor from South Korea who has written a handful of papers on something called Alternobaric Vertigo. It’s caused by a pressure difference in the ear (even a small one) because the patient is not able to “pop” one ear. AND Silent Reflux comes alongside it.

So, as I wait back for the doctor in South Korea to respond to my email (it’s already been 2 weeks though…), I’m going to explore other options first. I have a VNG test in 5 days, and then I meet with a new ENT in November. We’ll see what he says. I also want to be evaluated for SCDS because I have somewhat aligning symptoms there. Also, I’m scheduling an appointment with a GI Specialist to see if I have a Hiatal Hernia causing my Silent Reflux. I’m honestly mostly leaning towards the Alternobaric Vertigo. It will be an easy fix with the balloon catheter non-invasive surgery. The tough part will be finding a doctor in the US who is on board with it, so that is why I am narrowing down the options first. My fingers are crossed the doctor in South Korea responds to me too.

Yea, so that’s my plan. It’s quite long. I have been sick my whole life, but it only gets worse and worse with each passing day. The dizziness, the migraine, the sleep problems. A new symptom has popped up 2 weeks ago- true vertigo. It happened 3 different times when I laid in bed on my stomach- I felt like I was spinning and falling through my bed.

I have been in a really dark place this past year. I’m fighting everyday to barely function. I only am at college 2 days out of the week taking 2 classes because it is all I can manage. After graduation, I don’t see myself even being able to hold down even a part time job. These final tests are kind of my “last hurrah.”

Thanks for reading my story :slight_smile: I apologize for how convoluted it is.

2 Likes

@Sheedow very sorry you’ve been suffering but it is also very interesting that you’ve considered the relationship between ears and stomach problems. I have by chance written recently about this exact potential relationship in #research-theories-controversies (which has a trust level barrier, you need to be TL2 which is gained through positive engagement with the forum over time.)

Suffice to say the diet used to treat eg Gastritis is uncannily similar to the 6 C’s MAV diet.

I have also read about alternobaric vertigo, ref: https://mvertigo.org/t/vertigo-due-to-eustachian-tube-dysfunction/15932/3?u=turnitaround (access to TL2)

Hydrops in the inner ear is theorised to be exacerbated by inflammation as the inner ear is thought to be “immune active”. If you get any inflammation in the upper Eustachian Tube perhaps …

You should definitely try to do what you can to improve your GI issues in any case.

Good luck with your appointment and let us know how you get on!

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I see the connection although must admit the actual term ‘Alternobaric’ is new to me. Anything that can affect the ears could certainly have involvement. Since chronic MAV my left ear refused to ‘pop’ for years but recently, since I’ve been less symptomatic, it’s started to do so again. Ears have a strong involvement in Vestibular Migraine for sure.

Anyone get pressure sensitivity as a symptom?

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How interesting. I haven’t been here for a while and been busy experimenting. I’ve had the past 3 weeks off work and finally had time to complain to the doctors again. I mentioned my thoughts about the gut and they agreed to do a gastroscopy (3 days ago) and I have Hiatal Hernia (HH) and gastritis. When I first became sick one of my complaints was what I thought was costochondritis. Always having a feeling of this ball of tension.

I have a CT scan in a few hours and thought I would plug HH into here to see what I find. After reading so much on many chronic conditions the vagus nerve and stomach acid are implicated often and HH affects both of these.

Interesting to hear your results (OP)

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Can you explain ‘Silent Reflux’ please. Not a term I’ve come across before. Hiatal Hernias are common as far as I’m aware. I have known many people (including mother-in-law) who suffered with them for many years. They all appeared to have very active, you could even say ‘noisy’ reflux and long lists of foods they had to avoid to reduce discomfort. However none of these people had vertigo or other VM symptoms. Nor did they suffer migraine. So MAVers must have some additional predisposition towards vestibular issues as well as a digestive disorder.