u/Specialist-Tea6001

Hi Everyone, a beta version of Balance: Vestibular Diary is now available for Android users to test. You can download it at https://play.google.com/apps/test/com.alchemyg.balanceapp/3. 

The full version for iOS is already available on the Apple App Store: https://apps.apple.com/us/app/balance-vestibular-diary/id6761732163

About Balance Vestibular Diary: 

If you struggle with inner ear conditions like Vestibular Migraines or Ménière's Disease, Balance: Vestibular Diary was designed for you — by someone who lives with it too.

Track episodes, symptoms, and triggers with just a few taps. As you log an episode, Balance automatically looks up the barometric pressure at your location — before, during, and after — so you never have to do it manually.

Choose from a list of common symptoms and triggers, or add your own. Over time, charts show you how your episodes relate to pressure changes and which triggers appear most often.

When it's time to see your doctor, export your data as a CSV or a one-page PDF summary — formatted for easy reading, not a spreadsheet dump.

Knowledge is the key to managing difficult vestibular conditions. Balance helps you get there.

To learn more and join the public beta, visit https://alchemyg.com/balance-app/

I've now been taking Ebselen / SPI-1005 for a couple of months as part of the Phase 3 trial, with one interruption: I had a sudden uptick in afib episodes, and the doctor running the study advised me to hold off. After consulting with the manufacturer, and getting the afib back under control with an adjustment to another medication, I resumed. Five days missed.

Those five days didn't seem to make a big difference in the long run, but I did notice a return of some slight balance issues that had not been present. They cleared up within a day of restarting.

All of that is ancillary to the main story, though, which is this: Ebselen is proving to do exactly what it promises. My tinnitus has decreased and my hearing has improved, by a good margin.

A quick refresher on my prior symptoms. I've had high-end tinnitus for decades and have mostly learned to ignore it. In the last couple of years, I developed mid-range tinnitus in the same frequency range as my progressive hearing loss. This comes and goes, as does the hearing in that ear. I also get a general feeling of fullness, and I've had vertigo attacks at various times since my diagnosis about five years ago.

After 60 days on Ebselen, here's where I stand:

High-end tinnitus: Somewhat reduced. This is the symptom I was most skeptical about going in, so any change at all is a real surprise — it's been my constant companion for a very long time.

Hearing: Greatly improved. I commented to my wife this morning that my hearing aid's startup tones in my MD ear were almost equal to the ones in my "good" ear. At its worst, my MD ear heard those tones at about 50% volume. I think the distortion that causes inability to discern words has improved too — I was able to sit next to a friend in a noisy hockey arena the other night, wearing musician's earplugs, and understand everything he said. (Yes, noisy arenas are probably a bad idea. But I love hockey, and did I mention the earplugs?) I feel fairly confident saying Ebselen has been a major factor here, because the change has been so dramatic.

Mid-tone tinnitus: Greatly reduced. I think this goes hand-in-hand with the hearing improvement. I haven't had any of what I call "roaring" episodes — where the tinnitus is so loud I might as well be standing next to a freight train with its horn blaring. Those used to hit roughly every couple of weeks and last for half a day. Fingers crossed that this keeps up.

Vertigo and fullness: Harder to gauge. Sound Pharmaceuticals makes no promises in this area, and I don't blame them — it's hard for even those of us with the disease to pin down. Has my condition actually improved, or am I just in a period of remission? Are outside factors at play? If I have a vertigo attack tomorrow, does that mean the drug isn't working? What I can say today: I haven't had fullness or vertigo of any kind for about a month, aside from that one day after stopping the drug, and that was a 1 out of 10. I'd want to be on it for six months or more before giving it real credit here, and even then I'd be cautious.

Side effects: Haven't noticed any, except maybe some stomach upset when I first started. That subsided. As mentioned, I did have an increase in paroxysmal atrial fibrillation, which is something I've dealt with for years — but since Ebselen is essentially an NSAID for the ear, acting on inflammation in the vestibular system, the likelihood of a connection seems low. Probably a coincidence.

All in all, I think Ebselen is a worthy drug. Once it comes to market, I hope it makes it onto the standard formulary for all insurance carriers quickly, because it will be a game changer for some people. It's not a panacea for Ménière's — far from it. But it has been helpful for me, and I already find myself dreading the day the study ends if final approval hasn't happened yet.