Discussion in 'Research News' started by jer, Mar 3, 2018.
Separate names with a comma.
I submitted my information but never heard back. Did anyone else?
One board member was accepted but due to hyperacusis was wary (understandably) of the required MRI.
Can this BMS-191011 be found on the market, or something similar to it?
Do you still feel that XEN1101 will benefit hyperacusis sufferers as well? This is one of the potential treatments I'm really hoping will help.
If you really go through the Trobalt User Experiences thread with a fine tooth comb and focus on the users that used Trobalt at c. 900mg (recommended dose) for an extended period you will find that some users experienced a dramatic improvement in hyperacusis. I’m not an expert BUT I have gone through that thread and despite mixed results there are posts there that indicate that Trobalt showed a dramatic improvement in both tinnitus and hyperacusis.
Now XEN1101 is a more potent and better version of Trobalt but more importantly the OLE data suggests usage over 12 months shows increasing efficacy.
I think there is considerable hope for you.
To answer that, you would need to look at how hyperacusis patients responded to Trobalt. Might give clues.
No offence but the user asked the question of me, not you.
On paper, XEN1101 looks like it could be a slam dunk for tinnitus.
The only thing making me apprehensive, there has yet to be one single person who has used XEN1101 and claimed it made their tinnitus better (that I can find). The second I see a few good testimonials from individuals with tinnitus, I’ll be over the moon.
They need to Fast Track these drugs ASAP.
Yes. Compassionate use please.
From your Trobalt User Experiences research, were there people with head tinnitus who were helped? Tinnitus that is a sort of white band noise in parts of the brain, or felt in the whole brain?
Did Trobalt help tonal tinnitus (one or multiple tones) more?
You should have a thorough read but focus on those who tried the correct dose for a longer period. Not the users on small doses or changing doses. Make your own impressions.
It helped head tinnitus and changed tones, reduced them, etc.
It makes for an interesting reading.
I was also accepted into the study. After Korea I don't feel like chasing treatments, and with the cost of it all to stay in California for 3 months, and a 60% chance of the real drug, that people are only speculating in, I don't think I'll do it.
Absolutely your choice my friend, but I’m jealous you have the chance!
I researched but there are no clinical trials in Europe.
Did I miss something?
I'm not in Europe.
No depression trials in Europe but there will be epilepsy ones.
Would it be possible for an EU resident to move over to the US just to partake in the trial? Or would there be some VISA issues there too?
@Padraigh Griffin, I'm still considering it. I would have to take time off work and be away for a while.
What makes you/everyone/@AnthonyMcDonald think that this will work for tinnitus?
If there is enough evidence I may change my mind.
There is really only anecdotal evidence from the Trobalt User Experiences thread.
It is a massive decision for you especially after your brave Korean trip.
I’d suggest you read that thread and make up your own mind. XEN1101 has far safer tolerability and increased efficacy but is essentially Trobalt redesigned.
Maybe I missed it but how were you accepted into the study when they aren’t even testing this drug for tinnitus? Were you accepted on the basis for MDD?
I’m stuck in what has been a two week long permanent spike and really need something to hope for. Seems like a really long road that this drug would need to travel down before we’d even have the option of taking it. Probably years away, assuming Phase 2 and Phase 3 trials went well and then it was brought to market and could be used off-label.
MDD, although I am only depressed due to the tinnitus. But my psychiatrist who caused all of this crap diagnosed me with it, after causing it.
Exactly my story. Useless Psychiatrist. Not a clue.
Now having to revisit SSRIs as depression is crippling.
No. Only the active ingredient.
I thought there was an open extended study also in the MDD, meaning you can continue with the pills after the study ends. Correct me if I'm wrong.
There is plenty of evidence XEN1101 will work for tinnitus. Several papers (including Prof. Tzounopoulos) showed Kv 7.2 potassium channel changers influence tinnitus,we have Xenon Pharmaceuticals themselves acknowledging tinnitus is a potential target of XEN1101, we have the anecdotal evidence of Trobalt (I went through the entire thread recently myself, overall positive, and considering XEN1101 is more tolerable and an upgraded version...)
I thought there were mouse model studies too for Kv 7.2 modulators, but I'm not sure if these were tinnitus or epilepsy studies. Either way, XEN1101 seems far more promising than SPI-1005 in my opinion and is the most promising pharmaceutical intervention in the pipeline.
Double blind. No continued use.
How long till it's available for epilepsy?
Professor Thanos Tzounopoulos conducted a study in which mice were blasted with noise from speakers and given a Kv7.2/7.3 opener a few days after the exposure to see if administration of this drug prevented the induction of tinnitus in these mice (see attached file).
On a side note, people should really read threads and do their research first before asking questions.
Prof. Tzounopoulos briefly addressed XEN1101 in his latest paper (see attachment) as another 'promising' potassium channel opener. The idea of a collaboration between Prof. Tzounopoulos and Xenon Pharmaceuticals seems like a total delusion to me.
By the way I am glad to hear from you, your post history had me a bit worried about your safety to be honest. I hope this summer wasn't too bad for you. Take care.
Probably around 3 years give or take.
This was sent to me freely. I asked for the inclusion/exclusion criteria. In case anyone is near some of their multiple locations for the trials.
You can delete if you think this would compromise the study.