Why did you try antibiotics? I thought it was ototoxic for the ears! Strange that your doc gave you antibiotic, I think that prednisolone helped you the most. When I was on prednisolone (alas 3 weeks after the onset of my T which was far too late to save some of my precious hair cells ) I woke up 3 times in silence end december, but it was alas temporary. If only I could have had the drug within the 24/48h, I'm sure it would have saved me a lot of damaged hair cell, and I'm conviced I wouldn't have developed permanent T, maybe I would have had a temporary one It's a shame that nobody warned me the day of my accident to check my ears immediately, anger is still there after 4 months....
I'm having my open label shots this next Monday. I'll keep you updated. It's curious how even not having been a major issue for me to go through the first round, I feel really scared about this open label round.Curious if the open label has ever helped anyone, seeing as how I'm pretty damn sure I got the placebo I'm praying it can provide some relief.
As far as habituating, I was more or less habituated by week 2 since I got T, when it was permanent, hissing pretty loud and relentless. But honestly, there really is no way to truly habituate, when you go from intermittent silence to T, even low T, and some days returning as a hissing 2/10 which is far more annoying after a day of silence, then when it's a constant 3/10. It's easier to habituate, at least for me it was, when it's permanent. It's there, you're stuck with it, so you begin the process of habituation. This is different. I go to bed in total silence, and then I wake up and it's back. Even if low and not a bother, it's not something you can ignore. I still feel there is something wrong with me and that I have a disease lurking in the background.
Hey everyone,
I've been lurking for quite some time on this forum & I've read all the 60 pages before making a remark.
First of all, thank u all for posting aobut your experiences.
I also have been participating in the AM-101 trials in Belgium. My T back then was actually compared to now lower in loudness. But I don't believe the increase in loudness has anything to do with the AM-101 trials. Since it spiked permanently on march 14.
At the moment I have the option to go for the ampact (round 2) injections next week monday untill wednesday.
For me this is a very hard decission, even after reading all your stories.
If I would take the second round of injections next week then my T will be allmost at the 7 month mark from onset.
Therefore the decission is even harder to go for it.
Is there anyone who can give some more info related to how exactly doing these follow up injections (with 100% sure the real drug) can have a positive effect on the levels of extra-cellular glutamate. And therefore be beneficial to avoid or maybe avoid more increase in the near future?
@Joe Bananas how are you doing Joe? Curious about your open label experience with AM 101.
Well, just back home after the three days receiving the open label round. It has been a real pleasure to be attended by the Dr Juan Manuel Espinosa who is a real professional, being comunicative and really nice at every moment. The whole experience has been smooth as silk and now I am experiencing the normal stiffness, deafness and muffled sensation which fades in a few days. Will post the evolution along the upcoming weeks.
Well, just back home after the three days receiving the open label round. It has been a real pleasure to be attended by the Dr Juan Manuel Espinosa who is a real professional, being comunicative and really nice at every moment. The whole experience has been smooth as silk and now I am experiencing the normal stiffness, deafness and muffled sensation which fades in a few days. Will post the evolution along the upcoming weeks.
Hey everyone,
I've been lurking for quite some time on this forum & I've read all the 60 pages before making a remark.
First of all, thank u all for posting aobut your experiences.
I also have been participating in the AM-101 trials in Belgium. My T back then was actually compared to now lower in loudness. But I don't believe the increase in loudness has anything to do with the AM-101 trials. Since it spiked permanently on march 14.
At the moment I have the option to go for the ampact (round 2) injections next week monday untill wednesday.
For me this is a very hard decission, even after reading all your stories.
If I would take the second round of injections next week then my T will be allmost at the 7 month mark from onset.
Therefore the decission is even harder to go for it.
Is there anyone who can give some more info related to how exactly doing these follow up injections (with 100% sure the real drug) can have a positive effect on the levels of extra-cellular glutamate. And therefore be beneficial to avoid or maybe avoid more increase in the near future?
Anyone got some tips on not swallowing for 30 minutes?
@Joe Bananas
How're you doing buddy? We wanna hear some kickass T news from you like "Guys, I woke up this morning, searched for it but couldn't find it, WTF!".
May god bless you!
Exactly one week after my first open label shot. No improvement to report so far. I am dealing with an horrid diarrhea since last Saturday and it helps me have my mind out of my T, which is the same as before shots. Also, having eaten no food since Saturday and having been beholding this since then have kind of helped:
http://www.freerangela.com/
Hope so. Will keep you guys updated. All I want now is eating a tempura chicken + colesaw + cheddar + sriracha sandwich!!! Then I could go back quietly to my tinnitus hell.Hmm shit. Get well soon!
Hope and pray that AM-101 has an effect for you in the long run (within 90 days after the injections).
Hahaha I'll keep that in mind broWatch a 30 minute horror movie on your smartphone
Hope so. Will keep you guys updated. All I want now is eating a tempura chicken + colesaw + cheddar + sriracha sandwich!!! Then I could go back quietly to my tinnitus hell.
how did u manage the non swallowing policy ?
By the way, in this open label round I felt something I hadn't in the first double blind round. The tip of my tongue felt kind of numb and the spicy tabouli, the king prawns salad, the russian crab and the cold pasta salad I ate tasted like cardboard.
Hopefully there's nothing with your gustatory nerve (chorda tympani) which runs above your eardrum right behind the eardrum. If this nerve is damaged the sense of taste of your front tongue half can get lost. Usually an ENT uses the lower part of your eardrum for an intratympanic injection so the gustatory nerve cannot be hit by the needle.
So the sense of taste experience you are talking about is strange. The AM-101 substance itself cannot damage the chorda tympani nerve (0.87 mg/mL esketamine cannot anesthetize the nerve and even if the anesthesia fades after an hour). Maybe the needle of the AM-101 syringe has touched your chorda tympani nerve for whatever reason.
Would check into a hospital (neurology) immediately if I were you!
Everything is fine with my taste. That feeling lasted just for that dinner. Next morning I could taste the crappy breakfast at the Hospital in all its repugnant and mediocre glory. Thanks, guys!!WTF, I didn't even know this was a risk. Hope you're okay Joe!
Cool! keep us posted,Second injection today // things went smooth
*Allmost no pain
*Slight T spike
*Bit of headache & nausea
For those who are still wondering or for those who have additional questions about the AM-101 u can allways ask me.
Cool! keep us posted,
hope you are T free, soon
3th injection
*Lil pain
*Moderate spikes in T loudness
*Headache
We'll see the result in 1-2 weeks Fingers crossed