Having my VNS tomorrow.

Still no improvement. Had VNS on Sept 20, '17. About 3 1/2 months ago.

Saw Migraine specialist at ear clinic about 10 days ago. He put me on Migraine diet. I'd already been on it for a few weeks. Still on it now about a month now. Has not changed anything about my dizziness. I do not think I have migraine related MM (MAV). I probably have a virus and I'm continuing to take anti-virals and Lysine. I'm prolly a month into them now. No change, but I hear it takes months. (Every freaking thing seems to take months.)

He put me on Effexor. I am to open up the capsule and take a few grains of it. I'm not exactly sure why Effexor. I think, basically, he said something about calming my nerves/suppressing the vestibular system. I guess like Xanax or vodka.

If anyone knows about Effexor vs. Meniere's please chime in. I saw one post here, where I think it helped the person.

Starting Effexor today. Hoping 2018 brings relief.

 

Good point and I agree. Which is why, yes, I do keep a daily journal. I use a number system and divide the day up into seven sectors. Each sector is about 3 hours. The daily totals haven't improved in 2 years.

To be specific. The major 12 hour spinning attacks seemed to have burnt out.

But I still get slow, non-nausea spinning attacks. About one every 2 months so far. Which shouldn't happen after a successful VNS.

The head-movement dizziness from having the nerve cut, slowly gets better. Extremely slowly. This is the kind of dizzy that can be helped with therapy/activity.

But, my internal dizziness remains unchanged. By "internal" I mean a constant dizziness that you feel when your not even moving your head or body.

I am always dizzy. Often functionally. But mostly distractingly/upsettingly dizzy.

My hope lies in two things.

1. The surgeons didn't cut the nerve completely. Which means they can go back in and cut it correctly. (My girlfriend hates this idea. But I tell her it would mean a real...knowable...fixable...solution. I could care less about the pain of surgery and difficult recovery. My God, if a follow-up VNS could still fix this thing then let's do it tomorrow! I hope my balance test/ENG in late January shows the bad nerve is is still alive...so we can kill it...again.)

2. I have a virus and my anti virals will help significantly.

 

Interesting thing. The migraine specialist at the clinic advised me to get off the antivirals, since after 3 weeks "they haven't been helping you anyway." I didn't bother to tell him that the literature says antivirals can take up to 3 months or more.

I don't even feel like seeing him for the follow up he scheduled. I'm thinking about just making an appointment with the clinic's allergy specialist. Dr. D. My thinking being that she has a better understanding of antivirals than he does.

 

Just to be clear. The major, 12 hour, fast spinning, attacks stopped about a year before my VNS surgery.

 

Scott, he didn't give any reason why I should get off the antivirals other than they weren't working so far, 3 weeks in. He said with a shrug that I could keep taking them if I want.

He thinks I may have PPPD. Persistent Postural-Perceptual Dizziness.

From what I can tell from my research, it's basically Meniere's but made worse by anxiety/depression/visual stimulus. It used to be called phobic postural vertigo PPV. Hense he prescribed small amounts of Effexor for me.

PPPD can co-exist with other vestibular disorders, such as Meniere's. So again, everything's complicated. And there are no tests for it.

Here are some symptoms of PPPD:

"Symptoms are typically worse with:
--Upright posture (standing or sitting upright)
--Head or body motion
--Exposure to complex or motion-rich environments"

So, no different than Meniere's then.

Again, to me, it just means your Meniere's/dizziness symptoms are made worse by stress/movement/busy visuals. We already knew that.

I'll keep taking the Effexor. I'll try anything.

Here's an article on PPPD

https://vestibular.org/pppd

 

Scott. Suggesting a laby over a VNS is quite a statement. I do have about half of my hearing left in my MM ear, so I think it's too early for a laby. Perhaps you didn't know I still have a good amount of hearing left in the bad ear.

If my MM dizziness is viral related, would a laby solve the dizzy?

MPG. I hate what stores do to my dizziness. Can't imagine you actually work in one. Can they give you an office job? Do you take a Xanax before work? Maybe try taking just quarter of one.

June. That's good to know about Dr. D. Thanks.

 

Three cops showed up on my doorstep this morning. I had a slow rotation attack yesterday. My veterinarian called during attack to tell me my dog was ready for pickup. I told her "can't, dizzy" and hung up. She called again I didn't answer. Too hard reaching for my phone etc. So this morning I guess they called the cops. They parked two squad cars in front of my neighbor's house for about 15 min. Wondering if I should call neighbor and let her know I'm not a murder suspect or haven't beaten my girlfriend.