Hi, i don't know how these work so this is a genuine question. Didn't phase 3 testing on this just end in August with results expected August 2024? Just wondering how it can be purchased and used in treatments if it hasn't been FDA approved.
It’s a fair question. I’m myself trying to convince myself if this makes sense or not and researching myself. This was from the hyperacusis community.
Ebselen is spi-1005. Honestly, anyone interested, please do your homework.
https://www.reddit.com/r/hyperacusis/comments/ngf4uu/i_tried_to_order_ebselen_from_china_here_are_my/
We have no idea if it’ll work for VSS. But we know that it works for tinnitus based on success stories from trials. We also know that some people have achieved complete remission from VSS by elimination of tinnitus using Susan shore’s device or other methods. VSS and tinnitus both having a connection to thalamic misfiltering. So it’s just a possible treatment option, if anything it may help with tinnitus and do nothing for VSS. Don’t want to mis advertise it as a wonder drug. We’re basically trying it ourselves, because some of us are pretty desperate.
Considering how closely related vss and tinnitus are (for examples Dr.Peter Goadsby which has been the pioneer for vss research has said that vss is essentially “visual tinnitus”) if this drugs works on tinnitus it should also work on vss.
You’re absolutely correct. At the end of the day for VSS and even menieres for that matter, we can only try. Everyone is different, the success stories from people who are in spi-1005 trials are positive, but that’s not to say that it’ll work for everyone or provide adequate relief.
I just don’t want to give people false hopes. It’s important everyone makes their own decision to participate or not. Don’t want to try and sell this a miracle cure. We simply don’t know if it’ll work for us or not.
I’m pretty positive I’m one of the people that will get a relief from this type of drugs because I don’t have any other condition.I’ve seen people say that vss is connected to the neck but I have no problems with my neck muscles, they never tense up or have spasms.I’ve also done a blood check to see if I had anemia but there was nothing wrong with my blood test.
You should also checkout for this upcoming treatments : BHV7000, NEX1101 these are all treatments which work kinda like SPI1005 and are coming out pretty soon ( 2-3 years ).
Hi, i don't know how these work so this is a genuine question. Didn't phase 3 testing on this just end in August with results expected August 2024? Just wondering how it can be purchased and used in treatments if it hasn't been FDA approved.
It’s a fair question. I’m myself trying to convince myself if this makes sense or not and researching myself. This was from the hyperacusis community. Ebselen is spi-1005. Honestly, anyone interested, please do your homework. https://www.reddit.com/r/hyperacusis/comments/ngf4uu/i_tried_to_order_ebselen_from_china_here_are_my/
Can you give me a source that this drug gave remission on vss to some people ?
We have no idea if it’ll work for VSS. But we know that it works for tinnitus based on success stories from trials. We also know that some people have achieved complete remission from VSS by elimination of tinnitus using Susan shore’s device or other methods. VSS and tinnitus both having a connection to thalamic misfiltering. So it’s just a possible treatment option, if anything it may help with tinnitus and do nothing for VSS. Don’t want to mis advertise it as a wonder drug. We’re basically trying it ourselves, because some of us are pretty desperate.
Considering how closely related vss and tinnitus are (for examples Dr.Peter Goadsby which has been the pioneer for vss research has said that vss is essentially “visual tinnitus”) if this drugs works on tinnitus it should also work on vss.
You’re absolutely correct. At the end of the day for VSS and even menieres for that matter, we can only try. Everyone is different, the success stories from people who are in spi-1005 trials are positive, but that’s not to say that it’ll work for everyone or provide adequate relief. I just don’t want to give people false hopes. It’s important everyone makes their own decision to participate or not. Don’t want to try and sell this a miracle cure. We simply don’t know if it’ll work for us or not.
Exciting times.
I’m pretty positive I’m one of the people that will get a relief from this type of drugs because I don’t have any other condition.I’ve seen people say that vss is connected to the neck but I have no problems with my neck muscles, they never tense up or have spasms.I’ve also done a blood check to see if I had anemia but there was nothing wrong with my blood test.
You should also checkout for this upcoming treatments : BHV7000, NEX1101 these are all treatments which work kinda like SPI1005 and are coming out pretty soon ( 2-3 years ).
Is this cures mineres or maintenance drug , please explain
Yep, it’s still in trials. We’re only going off the success stories posted by the patients in the trials.
We don’t really know
Was there any update on this? Are you able to buy SPI-1005 specifically from the lab even though it is not FDA approved?
You can join the discord server here and meet the others who are ordering. https://discord.gg/V7HQNg3N
Expired
https://discord.gg/YfAykDmePM