Since they have not responded to me about the study and it is not possible to know when the drug will be able to be purchased with certainty (I estimate that in Europe 12-18 months is very fast after that in the US). I have decided that since Ebselen is a kind of "synthetic glutathione enzyme" I am going to take one of those famous supplements that help to generate it naturally (NAC, Selenium and Vitamin C), surely it will not have as strong an effect as this medication, but if it can help while I wait, I'd rather try. I have also seen that eating helps with these compounds and is not a great difficulty: broccoli, garlic, shellfish, etc. And anything high in protein. I found comments from a woman who in 2013 said she had recovered her hearing after about 5 years taking NAC on the recommendation of her ENT doctor. There is also a 2003 study indicating improvements when taking NAC for Meniere.
https://www.researchgate.net/public...failure_of_conventional_therapy_A_pilot_study N-Acetylcysteine Combined With Dexamethasone Treatment Improves Sudden Sensorineural Hearing Loss and Attenuates Hair Cell Death Caused by ROS Stress https://www.inspire.com/groups/autoimmune-disease/discussion/living-with-menieres-for-15-years/
I hadn't considered that aspect of MD, @IvanNew. I think my hearing is done fluctuating, so improvement would be nothing short of miraculous. I'm glad you've noted a decent increase in your hearing test score. I hope that improvement holds steady for a long time!
Yesterday was my 60th day on the drug, no improvement yet, my tinnitus which seems to have worsened since I started the drug has leveled off.
@yellowboy - The good news is that your tinnitus isn't continuing to get worse. Perhaps this is the beginning of improvement!
SPI-1005 day 5 with the real drug: Definitely a test this week. I have been under huge stress and grief with having to put both my pups down on Wednesday. No kids, so our pups have always filled that void. I have been having MD attacks daily it seems for many months. Had one the morning of departure for the long ride to Sacramento for exams and pick up drugs. Nice huh? Now for the info you want to hear. After 2 doses of the drug, no debilitating dizziness and no vertigo. On day two I dug the grave for my pups in the 94 degree sun. I didn't care due to my sad mental state at the time. Day 2, stressed and kind of dizzy but not bad. Jump ahead to day 5, still no vertigo or dizzy attacks. Back of neck still a bit tight and sore late afternoons. Can I tell M.D. is still here. Yes, My head still has some discomfort when moving it too fast. Not dizzy or debilitating, but 80% better than 5 days ago. Hearing: when I had my audiology test/exam Monday, ear same as last month, not good last 2 tests. That said, sensitivity to sound slightly improving. I can bang pots and pans and not suffer ear pain. Bad ear has made some weird toned sounds yesterday. Tinnitis still there of course. If this stuff works, I'm sure it's gonna take some time for significant ear improvement. Some will say, maybe placebo effect? I think not as my mind has not been focused on this drug with all the distractions of stress. So, I remain optimistic and pray for a positive outcome for not only myself, but all that suffer with this terrible disease. I will give another update on day 10. Have a Blessed day!
Sorry to hear about your pups. That would stress a normal person out more than anything. I am day 72 on the actual drug, the only thing I have to show for it is increased tinnitus. I am sticking it out - other than hoping things will get better all I have is my buddy at the left.
Mark, sorry to hear about your pups, I know the feeling of losing a pup - they're a member of the family. I have just started day 4 of the drug, so early days. I had been making positive progress with regards to my eustachian tube dysfunction that came with my bilateral Meniere's so it's tough to tell what might be making a difference, however, today, I physically worked hard for about 3 hours and I didn't feel like my bad ear was going to explode. I haven't been able to do that for a while, and I have been going through elevated aural fullness for the past month off and on. I'm hoping that this is due to the drug having an impact. I can't speak to vertigo as I haven't had an attack since early Oct. 2022 - it's about the only symptom that I haven't experienced recently. So my current regimen is as follows: Antiviral - to suppress the virus. I've been on that for 5 months now. Famciclovir 500mg 2x daily LDN - to regulate my immune/inflammatory response. 4.5mg once daily SPI-1005 I'll update my progress here at monthly milestones and as anything significant happens. Whether SPI-1005 works for me or not, I do believe that this drug is the real deal and can help people with this dreadful disease improve their quality of life. And let's face it, isn't that what most of us truly want?
Yellowboy, I heard of a few folks that didn't see much till the 90 day mark. Hang in there, friend. Like you, I'm in it for the duration. MrE, I'm glad your taking the antivirals, as I cannot. Always interested to see how folks do on them. Nice that you been vertigo free for a while now. Hey, thank you both for the condolences on the pups. Been a rough one!
While some see quick results on their treatments, we have to remember most do not. Ears are very sensitive organs and it takes time to halt whatever is happening to us and then for us to see whatever recovery is possible. I keep telling myself that, reminding myself that even on antivirals there are people that didn't experience positive results until 6+ months.
Hi, I haven't been writing much lately, but I read you every week. I am sorry for the loss of the puppies, I had to bury mine about 6 months after starting my Meniere, the combination of both things was horrible. much encouragement. I also encourage those of you who continue to endure this drug even if you still do not notice improvement. As the fellow said, many people need 90 days (remember that the JOH regimen could even need 180 days or more). I don't know whether to mention it here because it's not directly the medication, but I've been taking Glutathione, NAC, Selenium and Vitamin C supplements for almost a month. Without major changes that I can notice myself, maybe with an audiometry I'll notice changes. In September I will go to the ENT and I will have another exam and I will know. But I can say two things that I notice: 1- The bad one, the healthy ear continues to whistle, sometimes a lot and sometimes a little. If this supplement really did something, I guess the first thing would be to improve this. 2- The good news, my mood and energy is much better. I started playing paddle tennis this year and my legs couldn't support more than two games a week, this month that doesn't happen to me anymore, in fact I've started going 3 days a week without tiredness problems or sore muscles. Greetings
I've also been out for a bit & am terribly sorry to hear bout your loss @Mark55. I can say from experience that even w/ kids, the loss of our dogs is like losing a child. We had to put ours down a few years ago exactly one year apart at Christmas time. For a year after they were gone, I'd expect them to greet me at the front door when I'd come home & was always shaken awake when they weren't there. It's tough. Our kids flew the nest about the same time (off to college then life) which made it a double whammy. My heart goes out to you!! Thank you for your updates, re: "the real drug" @yellowboy. @IvanNew & @MrE. I'm following w/ intense interest.
Just wanted to jump back in here. I've been on the JOH regimen since last July; my last major attack was in November. Nothing since (knocks on wood). But to add to that, this morning was my first dose of the real deal drug. I started the trial a few months back, and the day is finally here. I'm pretty sure I had the placebo initially, so this should be interesting. In addition to that, I feel like the JOH regimen has really gotten my symptoms under control—no vertigo attacks since November. But tinnitus and aural fullness are still present every day. Just wanted to ask the folks who ARE taking the real drug. WHEN do you take it? I know the doses are supposed to 12 hours apart, so I'm trying to get into a routine so I don't forget.
I take mine when I get up and about 12 hours later, when possible. I don't worry about the 12 hour rule, it's not always possible. Also I don't wait 1-2 hours to eat, that's not practical, especially in the morning. Who is going to sit around 1-2 hours before eating- especially if you have to go out ? If it's going to work it will, and so far for me it has not -after about 80 days on it.
I take my doses at 9am and 9pm. That seems to work best for me because I'm always awake at those times.
I wanted to provide a quick update as I start day 9 on the drug. I have two positives to report. With my condition, I developed bilateral eustachian tube dysfunction shortly after the onset of my major symptoms - basically, every time I swallow, my ears clunk, hurt, click. It's very annoying and causes a great deal of discomfort. Within a week on SPI-1005 I'm able to swallow without any of this drama 90% of the time. In addition, some very specific sounds are less distorted to me. One thing that really bothered me are the road noises - the friction between the tires and the road. This has decreased as well and sounds much more normal. Not anywhere near perfect, but notably better. My tinnitus remains the same and overall hearing is likely the same as well. As for vertigo, I haven't had an attack since October, so that remains the same. Onwards!
So sorry things have not gotten better for you yet Yellowboy. That's a bummer. We have all gone through disappointments with MD "fixes" but this one would be especially hard. Wishing good things for ya. don