Search results for query: *

Unfortunately indeed. Sound Pharma advances pivotal Phase 3 clinical trials in Meniere's Disease Quote from source: “Additionally, SPI-1005 treatment reduced tinnitus perception or tinnitus loudness (TL) by a statistically significant difference (p-value <0.05 using Fisher's Exact test) when...

I don't want to be a big party pooper. But I did the same as you. Asking for compassionate use. Emailed them 3 times. Called 5 times. Let my doctor email 2 times. I never ever received one single response. So don't get your hopes up. "Boosting up the habutation :wacky: o_O"

Thanks for the support. I think so too. Nothing I can change now. Just deal with it. It just shit. It has been going very well lately.

So how does it work?

Thanks guys for the support. Needed that. I hope and think so too.

Flying to Finland to meet my girlfriend's family. 2th time flying. No biggie with good protection. It's all smooth. For the next part I couldn't be prepared for. I went out of the airplane. We had to go outside, old school no tube to walk back into the airport. The engine from the airplane was...

A lot of respect for your perseverance. That's my goal as well. Hopefully a cure will come and make our lives better. I hope you'll find this cure in your lifetime.

F....ing sport whistles. Asked two times if he could use the thing normally during the match. T feels weird or is it just anxiousness.

So where can we find the link to this clinical trial?

My bad then! Apologies. On google it said july 2020.

Not sure if this has been posted here already. I think it's from July this year. Nothing new, but it's some info. https://www.ata.org/news/news/tune-atas-brand-new-podcast-dr-susan-shore

So much research is going on. In time will have something. Only reducing our symptoms would already be a blessing. We can hold on!

Always appreciate your comments @Danad.

Totally agree with your statement, it's more a hint of what can happen in humans.

Stupid waiting game. We can start recounting.

Just read this article about Hidden Hearing Loss and all will make sense: https://leader.pubs.asha.org/doi/10.1044/leader.FTR1.22072017.48 Just some quotes from this article: “You can lose 50 percent of your synapses in minutes after a noise exposure, but it might take you a full lifetime to...

I've lost track of which research is going on. There is a lot going on. I can remember somoene made a nice overview of all the type of research (modulation, regeneration, etc). Do we have thread for this? Like a research track thread overview?

Nevermind my former post, at 1:00:45 during the Tinnitus Talk Podcast interview you can hear Carl LeBel stating the possible two additional patient testing groups. Mystery solved. Age-related hearing loss, younger than 65 with no evidence of extensive noise exposure Ototoxicity group, common...

So Frequency Therapeutics is stating the following: "Later this year the Company plans to commence a safety study of FX-322 in patients with age-related hearing loss, and also is evaluating other potential studies." "Planning for near-term studies in additional patient populations." What...

From my understanding, FX-322 does generate inner hair cells, right?

I had a good holiday, still shit moments. But better than normal. Now having a low point again, can't be motivated to work. Sick of this.

I have been to Amersfoort as well. The waiting list was about 1 month and they still have one machine for an extended audiogram. So you should call them up. Best of luck! Cheers, Fellow Dutch Sufferer.

I have had a telephone call 2 months ago with the Medical Director of Astellas in The Netherlands. She has confirmed to me that there will be a clinical trial in Europe. Nothing more, nothing less. I have no clue when and where (probably not The Netherlands, because we have shit rules for...

Why are we not so postive about these studies? I mean this study shows a lot of promise (see link, below)? Or do I miss something? This study was the first attempt to optimize the settings of tDCS for DLPFC stimulation to modulate tinnitus, especially to optimize the number of sessions needed...

Thanks, but Pfff.

So recruiting is finally done?

Fighting to stay sane and productive, but it's hard to keep a good outlook on life.

Same here @ruud1boy. When I was sixteen and went out, I always had it. It went away always. Like you, I had never heard about tinnitus and the consequences of it. My friends never had it but I got stuck with it at age 18. From then on I always went out with earplugs, while they didn't. Fast...

I have emailed two times and called them once leaving a message. No reaction so far. No answer yet, ofcourse. But don't you worry I'm going to stalk them until I get an answer. I don't really give a S...

Exactly. That is only true for mild/low tinnitus.

You are not really spamming, it's good info! So thanks a lot :)

I dearly hope all of you are wrong! But all what you are saying is making too much sense, damn it.

Yes, I'm well aware of it and their policy has been shared as well: https://www.frequencytx.com/expanded-access-policy/ Right-to-try laws are U.S. state laws and a federal law that were created with the intent of allowing terminally ill patients access to experimental therapies (drugs...

Is there no way to legally demand "expanded access" use under the Right to Try act?

For me it's simple. At this very moment in time only FX-322 (not mentioning other things because they still take 5-10 years) seem to have a possibility of lowering tinnitus. So why wait 3 years for maybe compassionate use? It's not like anything else is going to solve anything for us in the near...

For whom it may be interesting. I took some steps to find out their stance on Expanded Access/Compassionate Use possibilities. I can update if anyone is interested. See the email down below: Dear to whom it may concern, myTomorrows is a company that helps patients with an unmet medical need...

Nope unfortunately not.

Oeff sketchy indeed, they need some brave clinical trial participants for that o_O

There is a lot going on. My tinnitus worsened 10 years too early.

But why wait? I can't find anywhere if they are open for expanded access.

I was thinking that as well, but I can't find anything about the possible side-effects. I (or anyone in that matter) don't want to ruin any changes for FX-322. If it depletes supportings cells like you mentioned audion's drug did then it's better to wait. I saw this statement "No serious...

So let me use my brain. It says: -sudden hearing loss -noise-induced hearing loss -age-related loss where sensorineural hearing loss and tinnitus are prominent features So this would mean that it's not only for acute stages :angelic:?

"These improvements in auditory function further support the use of SPI-1005 to treat sudden hearing loss, noise-induced hearing loss, and age-related loss where sensorineural hearing loss and tinnitus are prominent features." So is this only for Meniere's disease related tinnitus? Or can this...

The funny part is that it is a research from 2009, you thought they would have catched up by now.

Oh wow! That is crazy. I had a similar encounter yesterday. I planned to remove my earwax. This time not my usual ENT (who is really good and understanding) removed it, but a different one. We discussed tinnitus briefly. I told him my hearing looks fairly normal on a 8kHz audiogram. He then...

I found this pretty interesting. Just like to share it. To compare tinnitus patients who have normal hearing between 250 Hz and 8 kHz with normal controls with regard to the ability of each group to hear extended high-frequency pure tone thresholds...

I know it is freaking cruel, but if it's done for a greater good for mankind and the animals don't suffer to much. I'm fine with it.

Is anybody here friends with Bill Gates?

It makes sense what you are saying, but I hope you are wrong.

I'm sick of waiting for a cure or just a relief.

FX-322 restores the OHC, IHC and the underlying/attached synapses as I have understood. It won't restore a broken synapse if the OHC, IHC are still intact. But do we have an idea if broken synapses or damaged OHC/IHC cause tinnitus? Or what damage would make sense for causing tinnitus?

True. Hopefully end of September we know more.

I think we have better chance of FX-322 getting Compassionate Use (Expanded Access) in the meantime.

@Diesel I agree!

End of 2021 wow. That is disappointing. Sort of knew it, but still.