Any news about SPI 1005?

What the name of the medication

 

Ebselen

 

Is it available

 

Just an FYI:
After my last check-up at the clinic, my hearing has improved quite a bit from last 3 month audio tests. Kinda crazy, as the Audiologist interrupted the test at the half way point and asked me if my hearing was significantly better. So, two hearing tests with improvement. This much better than last. Tinnitus has improved and no more hyperacusis. My good ear has made improvements as well. Should be noted that the good ear has always had normal hearing. After visit with doctor, he thinks if the drug is going to work, it may take 6+ months to work on the hearing. Some have results, others not. I have slowed down on the supplements. Honestly, I don't think they do much for me. Keeping the vitamin C, Krill oil and multi vitamin. I eat organic food including whole grains and follow the majority of the Vestibular migraine eating plan. I know for a fact bananas and ripe avocado are triggers for me. Everyone is different! Lysine made everything much worse for me from day one of starting it. As soon asI stopped it, no more vertigo. I have a long line of ear issues from my father's side, as well as Dad had Menieres. Everything that might cause Menieres I have probably encountered at one time or another.
I am getting back to somewhat normal as it can be. Hey, I was shooting at the gun range on Saturday! Any good day we have is a win! I hope and pray that this drug gets approval. I definitely want to keep taking it for years to come!
Take care and God bless

 

This forum needs a 'fingers crossed' and 'prayer hands' emojis.

 

@Mark55 do you know how many db your hearing improved?

 

Yes, last month of the trial. I end it on July 9th.

 

Hi! How are you doing?
Do you think the drug will go on the market?
Thx!

 

I'm doing alright. Not as good as I have been but generally my symptoms are better than they have been without the drug. Will it get approved? I have no idea, that will be based on all of the data.

 

I have no idea. They just tell me it has improved. I have had a bad 3 weeks. Started with ear pressure again, sensitivity and the worst Tumarkin crisis (drop attack) yet. Flying backwards onto the concrete floor. Hit my head pretty good. Since the fall, my M.D. has been worse. Equilibrium trash and it's been a week. Will be looking into Laby surgery in the future. This getting slammed to the ground and not knowing it's coming is dangerous stuff!
The clinic called and scheduled my last appointment for July 9th. I will post up what I hear in regards to the drug after the 9th.

 

But the ebselen/SPI-1005 isn't supposed to help with vertigo?

 

To say that stinks is an understatement. Here’s hoping for better days ahead knowing that symptoms can ebb and flow. It sounds like we both end the trial on the exact same day.

 

Thanks buddy!
Yeah, clinic dude told me the 9th is the last day of the study. So win or lose,it will be over soon. I asked if I could have all the extras, they laughed at me Haha
Now I gotta find some telehealth doc here in the U.S. that will give me a prescription for Betahistine so I can order it out of Canada!

 

Don't we wish we could have the extras! LOL. I priced out Ebselen at one point and for the amount of the drug that we're taking it would cost us $1500/month.

 

Honestly,
I don't think I was getting as much benefit from it as I thought I was. Because this disease bounces from good months to bad, it's hard to tell. I can say that it has improved the hearing a bit. Basically what the drug was designed for I suppose. If it does make it to FDA approval, unless my insurance covers it, I'm out. If I had great results, I'd sell my house. Just not seeing it