Yeah, I know the feeling - I am losing the hearing in my only remaining working ear. I am so depressed that I feel tears welling up when I think of it, or when I don't. The hearing aids don't work very well, at least not on the bad days because it is our inner ear that is broken, not the middle as happens in old age. Sorry, getting off topic.
I completely empathize. I'm 46 years old and when this all started two years ago it was tinnitus in my right ear with very, very mild high frequency hearing drop off in both ears (very unlike typical Menieres). Then a year later on August 1, 2022 my left ear crashed and I was diagnosed with sudden sensorineural hearing loss. I knew it wasn't just that though because I had all of the other Meniere's symptoms to go with it. In November, 2022 I could tell that I truly went bilateral because I started to exhibit more symptoms beyond the tinnitus in my right ear. Then in April 2023, my hearing in my right ear started to fluctuate. It hadn't fluctuated again until yesterday - 6 whole months. Perhaps I'm triggered by allergies and seasonal changes. You know, thinking about it, aside from the fluctuating hearing in my right ear, my left ear has been quite stable hearing wise for the past year. I've also improved on all other symptoms which is a positive. It's just that when the right ear fluctuates it's crushing emotionally and a reminder of where this disease can end up. On the topic of SPI-1005 it has been very, very helpful and I thought it was stabilizing all symptoms including my hearing. Now I have the gut punch that my hearing still will fluctuate. Even so, SPI-1005 has still helped significantly with hearing distortion, ear fullness, and my eustachian tube dysfunction. All great things. This disease will make you go mad. I'm tired of fighting it, I'm tired of analyzing it, and I'm tired of being scared of the future.
It's all about quality of life my friend. If I can function at 70% I'll be a happy man at this point, and quite frankly, I have been for the past 3 months. Slowly, today my hearing has been returning. Go figure, 24 hours ago it was partially gone and now it's coming back.
That happens to me all the time Mark, in my "Good" ear. It's very scary and I think, for me, it will come back at a little less healthy each time. I think it is only a matter of time until I go completely deaf
@MrE, Hey buddy, glad to hear the ear is getting back to normal. I've been taking 100 mg of B6 and 125 mg of B5. I think it definitely helps the inner ear. I have had dizziness trying to break through for the past few days. Ear was a bit off making some strange pitches. So far, so good. When I feel it, I jump on the Bosu ball and do some vestibular rehab to check balance. So far, so good We have been going through low pressure system moving in which doesn't help. I would say I'm still maintaining 80% normal. My biggest issue is the PTSD from severe attacks in the past. Driving is great until I get stuck at intersections. Start stressing... Agree that SPI-1005 has definitely improved my life. Good Lord willing, I will be waterfowl hunting on opener next Saturday. Stay strong
Donamo, I know it's tough but nobody knows that will be the case. Remember there will always be more stories about pain and suffering than success. It's human nature.
@Donamo, Have you tried the Benny Hill B5-B6 regimen? I started taking them last week. Definitely think it helps.
I added the B5 and B6 as well 3 days ago, because why not!? Lol. It's cheap, easy and safe. I'd say my hearing is back now. I honestly don't know if it was just a bout of the ear being plugged which is entirely possible because it came back after yawning and stretching my jaw. I was saying to a friend that in the past I would never noticed these changes because I had perfect hearing, but when you're hearing is compromised you will notice these changes regardless of the cause. It's also interesting that it's happened both times in seasonal changes, last time from spring to summer and this time summer to fall. Oh, and one other thing, I just hit 1 year with no vertigo! I have my 3 month checkup on Wednesday, so I'm heading to Florida tomorrow. I'll definitely be asking about the extension beyond 6 months. Enjoy the hunting, I have a feeling you'll be out there!
I would definitely try it, it's one of those things that likely can't hurt. It's cheap too, although to get B5 tablets that I could break I had to order them from the US. Shipping cost more than the pills!
That actually looks pretty decent. It seems most take more B5 than 100mg, but that's pretty close. Can you share a link to that one?
Well everyone my 3 month on the drug visit didn't go as I hoped. I now have a classic Menieres audio curve in my good ear. Compared to the last visit 3 months ago I had very normal hearing in my good ear right up to the higher frequencies which showed mild to moderate loss. I now have mild loss, getting closer to moderate at the lower frequencies as well. 250hz is 35db loss when three months ago I was at 10db. The crazy thing is that I'm feeling the best I've felt in a long time. Ear pressure is low, tinnitus is marginally down, and eustachian tube dysfunction is at a all time low, and sensitivity to sound is dare is say great?. Perhaps I'm going through a cycle, or maybe my ears are reacting to the flight I took and aren't functioning well because of it. I really don't know. I'm pretty disappointed though. Just 3 months ago, I had the best audiogram in a year, when I visited my ENT at home. As you might have read earlier in this thread, about a week ago I noticed a change in my hearing. The next day it seemed pretty normal (as in my normal) It seems normal today despite the audio results. If I had to guess, when I noticed the change I probably had more of a drop in the mid frequencies and those have come back. I wish I had better news, I'm pretty gutted right now. It's going to be a loooong trip home.
Well, that's too bad, but it seems this drug acts pretty slowly. You feel good and there are some positives like the eustachian tube and sound sensitivity. Dwell on those facts. Who told you you could have everything you wished for?? I'm heading to FL myself shortly, but not coming back for 6 months, which is still too soon!
Sounds like you're headed south for the winter -enjoy! I have some positives but never expected to have these results today. It's flies in the face of how I'm feeling.
Sorry to hear, buddy. Hey, I'd get it checked again in a few just to make sure. Maybe the flight tweaked the good ear some with the pressure. Like you, my ear sensitivity in the bad ear is gone for the most part. Prayers for ear improvement