Keep monitoring these forums. I will definitely post up if I hear anything in regards to approval. Take care and have a blessed day.
I just received this link for a device that helps "retrain the brain" so it defocuses on tinnitus which supposedly gives relief from the effects of constant tinnitus. Has anyone heard of this before? https://www.washingtonpost.com/well...modulation-duo/?itid=hp_most-read_p009_f001_1 How Can Neuromodulation Treat Tinnitus: The Science of Lenire
Nothing new to report here. I have spent the last two months battling a bacterial infection during which time my symptoms have been all over the place. Aside from that I would say I've been steady. The drug continues to help me with hyperacuity and ear discomfort. The clinic I am with was the last clinic to come on board with the trial and I joined the trial two weeks before they met their enrollment quota. Given that I've been extended 6 months until early July, we know that the trial ends sometime this summer so we'll know the results soon!
About 2 months after the onset of my hearing loss and other typical Meniere's symptoms, I developed a not so typical symptom - eustachian tube dysfunction in both ears. At it's worst, it's like my ears clunk every time I swallow, yawn etc. The intensity varies but in early days after the onset it hurt - I literally couldn't swallow without being in pain 90% of the time. I became afraid to swallow and often found myself going to bed early just because I couldn't take it anymore. Some meds such as LDN and prednisone (not a long term solution) helped get me to the point where the dysfunction occurred maybe 70% of the time. Within 1 week of taking SPI-1005 I got to the point that I can swallow 90% of the time without dysfunction and when it does happen it's much less intense and not painful at all. My theory is that SPI-1005 has helped to manage inflammation. Drugs aside, I'm now embarking on treating my TMJD, something that has plagued me for as long as I can remember. I used to work an extremely stressful job and developed the condition while grinding my teeth at night. These days I can feel the tension in my jaw muscles and wonder if the root cause of my Meniere's is in fact TMJD. I don't know, but I've done everything else so I'm going to tackle this problem, not just because of Meniere's but because I should for quality of life.
Hi everyone does anyone have any migraine type symptoms and if so can you tell me if the SPI-1005 helps with these symptoms? Thanks
My update: Like MrE, I was extended to the full 12 months. I was also one of the last at my clinic in N. Cal. That said, I will be done in July as well. It makes me a bit nervous as this drug has helped me quite a bit. I had a vertigo episode late last night. It lasted maybe 15 seconds and was done. Stayed up too late and body stressed from sickness in the house. It's been a few since I had any type of spin. Compared to what I used to go through, I'll take it! What has it done for me? Big help with knocking down vertigo. Has helped with the hyperacusis ear sensitivity and according to tests the hearing has improved in good and bad ear. I also take Lysine 3000 mg daily along with a handful of vitamins. I spoke to a ENT that is quite familiar with SPI-1005. He told me that this drug is currently the best thing out there in regards to new treatments. I hope this gets approval soon after trial is over. If it does, I will be taking it for sure. Y'all have a Blessed day and stay strong!
I guess I should qualify my disappointment with his drug that I posted on the other page. I was already on Betahistine before I joined the trial. My vertigo was virtually gone thanks to the betahistine. I was hoping for some relief from my maddening Tinnitus but unfortunately I got none. I am still in the trial and have one more in person visit. I may cancel it and drop out rather than make another trip which for me is about an hour and a half .
Sorry it didn't help yellowboy. I hear ya on the travel. About the same for us over the mountain. My tinnitus is there, but not as debilitating as yours. I may try the Betahistine next. Just had a bad tumbling vertigo. Super short but if I would have been standing up, might have ended up on the ground. Thought this short duration stuff was from the starting of Lysine back in November. I will stick out the Lysine for 3 more months just to see. After that, Betahistine to try. Argh....
Mark, curious why you haven't tried Betahistine yet ? My ENT put me on it as soon as I was diagnosed. My vertigo went from very bad episodes 3 times a week to a mild one every 3-4 months. BTW no improvement on the Lenire after 6 weeks. I just got it back from the audiologist who re tuned it. She wanted me to drive up to do it- I said no way it's a 9 hour drive for me. I'm not putting anymore money into this (other that postage !) . I will give it another 6 weeks and then it's going up for resale on the internet !
Good question! I have been on a drug for 24 years that contradicts everything I want to try for Menieres. Finally found a phenomenal Neurologist that is getting me off the old drug and on a new gen drug. Will take a few to get done. Anti convulsant so it's tricky. Look forward to the Serc. That is rough in regards to the Lenire device. Argh!! We had high hopes that would help your crazy Tinnitus. Maybe it's a late bloomer and will come through for ya! Will keep praying for a successful outcome!
I've got two months to go before my in-person check-in. Honestly, I'm not sure what it's done for me. As I've said before, I started the JOH regimen in July of '22, nine months before I started the drug. The JOH seemed to work. I didn't have any symptoms by the time I started the drug in April of '23. Fast forward to now, and I'm still taking it. Still on the JOH regimen, and still have no symptoms. I will say this. The audiologist never has much good news for me when she tests. I always ask, and she always says there's a little improvement, but not outside the range. However, this last time, she compared my results to my baseline results from April of '23. And there was a marked improvement. My hearing is getting better in my bad ear. So I take it back. I guess the drug is doing SOMETHING.
Last 3 months for trial. I can say that my bad ear has improved quite a a bit. Go to clinic on Thursday for hearing tests, etc. I am surprised as the last bad drop wiped my hearing out. I got off the Lysine that same day and started Vestibular migraine diet friendly foods. It has helped. I am excited to see how the ear is doing. I also do not have the hyperacusis issue anymore. Dog barks next to me and all good. Maybe trial drug took awhile to help bad ear. We shall know in July when I'm off the trial. Regardless of why, I take every good day as a win. I will post up results after Thursday. Have a Blessed day!
What a journey it's been, I start my last 3 months on April 16th. I echo the same sentiments that I think it's helped with hyperacuity, especially over the past 3 months. Normal noises that bothered my don't bother me that much at all anymore. I think it's the drug, but maybe I'm just adjusting. I doubt the latter though. Hearing in my bad ear on a pure tone average isn't much better, maybe 5db improvement at most. But I do better on the words in noise test than I did a year ago and I recently did a general word recognition audio test about a month ago and I hit 92% in my bad ear. For ad long as I could remember I would score around 70% on that one.
Are good news. I hope it continues like this or even better. We hope for your good results after Thursday. all the best