Hello Mathilda,
Thank you for your feedback. Did you receive any additional information from the UZ team?
Also, if you don't mind, could you keep me/us updated on how things progress for you in the coming days and weeks?
Thank you very much!
tRNS, The Next Neuromodulation Method
- Thread starter daedalus
- Start date
Thank you for your feedback. Did you receive any additional information from the UZ team?
Also, if you don't mind, could you keep me/us updated on how things progress for you in the coming days and weeks?
Thank you very much!
Hello Arnaud,
I spoke with the professor, and she answered some of my questions. For others, she referred me to her assistant.
The treatment will start on Wednesday, and I made sure I can stop at any time if needed.
Hello @Mathilda,
I hope you are doing well!
May I ask you how it has been going so far with the treatment? Thanks!
Hello @Arnaudswiss,
I'm currently in the middle of my first cycle—whether it's the placebo or the actual treatment, I'm not sure, though I have my suspicions.
I completely understand your curiosity to know more. However, I've decided not to share any updates until I've completed the study and can confirm when I received the treatment versus the placebo.
Assessing any changes in my tinnitus has proven challenging, especially as participating in the study naturally brings more focus to the noise. The only thing I can say with certainty (so far) is that I haven't experienced any worsening of my symptoms.
One positive note: the schedule for appointments is well-organized—this is Switzerland, after all! ;-)
I'm sorry that I can't share more at this time, but I wish you all the best in whatever you decide.
Best,
Mathilda
Thanks for answering me.
I'm glad you haven't experienced any worsening! I wish you the best for the rest of the treatment.Kindly,
Arnaud
Hello @HighFreq,
How have you been feeling lately? Has your tinnitus calmed down again?
Regarding the study, may I ask—did you notice any differences between the two cycles (placebo versus actual treatment)? Was there a difference in the noise presented, or did you feel the electric stimulation in one cycle but not the other?
Another question: did they inform you afterward which group you were in?
Hello @Arnaudswiss,Thanks for answering me.
I've changed my mind. I'll go ahead and provide an update next week after I've completed the first cycle. It will be highly subjective, but then again, tinnitus is all about subjectivity in the end, right? ;-)
Great! The sooner, the better, as far as I'm concerned.
@HighFreq hasn't been online since 24.09. It's a pity we can't hear from him.
Hello there,Hello! I hope you are well? Are you done with your first cycle? How did it go?
I'll try to summarize my experience as a participant in the study after finishing the first cycle last week.
First of all, for you to know: I have had severe multitonal tinnitus for seven months.
When I started participating in the study, I discussed with the assistant which tone of my tinnitus was the most bothersome to target during treatment.
I suspect I was in the group that received the actual treatment because I experienced changes in my tinnitus after the very first session. The most bothersome tone was sometimes nearly quiet when I was in a very silent room, which had never happened before in the seven months since the onset. It is difficult to say for sure, but my impression was that the tone would get louder again about 24 hours after the sessions. At first, I thought the loudness had returned to baseline, but now, six days after the last session, I feel like it is still somewhat less intrusive.
I still have the most bothersome tone, and it is still bothersome, but in certain situations, it does not seem as bad as before. Especially in a completely quiet room, I no longer feel like I am going to freak out immediately (the tinnitus is still strong, but I no longer feel the tone as a vibration in my head). I would estimate that this tone has improved by about 20%, which definitely takes the edge off and makes it more manageable.
One of the other tones I have became louder more frequently during the study. Usually, this tone is super loud (and not maskable) only once or twice a week, but during treatment, it was that loud every second day. However, this has seemed to fade again over the last couple of days.
Please keep in mind that this is my very subjective experience. I might be wrong about receiving the actual treatment, and the changes I noticed could be due to the placebo effect or simply the passage of time. Since I have only had tinnitus for a few months, I don't have years of stable experience with it to compare to. I had also experienced some improvement in the weeks leading up to the study (I think the tinnitus stayed the same, but I worked hard on my mental strength and started feeling better).
That's all for now. I'm really curious about your experience. Will you report on that?
Good luck with your participation!
Hello Mathilda,
Thank you for your thorough feedback!
I'm starting today, and I will report back here at the end of the first cycle.
Have you noticed any other side effects not related to tinnitus?
Thanks!
Hello @Arnaudswiss, good luck with your participation! I am really looking forward to your report.Hello Mathilda,
Thank you for your thorough feedback!
I'm starting today, and I will report back here at the end of the first cycle.
Have you noticed any other side effects not related to tinnitus?
Thanks!
There were no side effects at all, except for the change in the tinnitus.
Hello @Arnaudswiss,Hello Mathilda,
Thank you for your thorough feedback!
I'm starting today, and I will report back here at the end of the first cycle.
Have you noticed any other side effects not related to tinnitus?
Thanks!
How are you? How was the first cycle?
I can't wait to hear about your experience!
My second cycle starts next week already.
Cheers,
Mathilda
Hello, @Mathilda!Hello @Arnaudswiss,
How are you? How was the first cycle?
I can't wait to hear about your experience!
My second cycle starts next week already.
Cheers,
Mathilda
I'm doing okay overall, thank you! I hope you're well too.
It's a bit difficult to put the situation into words. In short, my tinnitus tones are still there and still bothersome, but maybe about 10% softer. The sound itself has changed slightly in character, but it's definitely not a game-changer, unfortunately.
I don't think it was just the placebo effect; almost every time, I could feel some tingling, heat, or even a slight burning sensation during the sessions. Right after each session, my tinnitus would be about 50% quieter, though only for a few minutes.
Toward the end of my sessions, I felt like the tinnitus was starting to soften a bit more, so I think the treatment was just beginning to work when we stopped.
How about you? Have you noticed any changes since you finished the sessions?
Wishing you all the best.
Hello @Arnaudswiss,
Thank you for sharing your experience!
I wish you had seen more improvement and am sorry to hear that the tinnitus still bothers you. It's such a strange condition!
It would be interesting to see what would happen if you had more sessions—whether your tinnitus would fade a little more or even significantly.
May I ask what kind of sound was used in your sessions? I also experienced a slight tingling during mine and wondered if they added a bit of extra sensation just to simulate the actual treatment.
So, I'm very curious to see what I will feel (and hear!) in my upcoming second cycle.Since stopping the treatment, I haven't noticed any additional changes. Most days, though, I have the impression that the most bothersome tone is a bit quieter (around 20%) compared to before I started the study. It's not a game changer, but on the other hand, I am coping better than before. Maybe it's just due to habituation, who knows?
Hello @Mathilda,Hello @Arnaudswiss,
Thank you for sharing your experience!
I wish you had seen more improvement and am sorry to hear that the tinnitus still bothers you. It's such a strange condition!
It would be interesting to see what would happen if you had more sessions—whether your tinnitus would fade a little more or even significantly.
May I ask what kind of sound was used in your sessions? I also experienced a slight tingling during mine and wondered if they added a bit of extra sensation just to simulate the actual treatment.
Since stopping the treatment, I haven't noticed any additional changes. Most days, though, I have the impression that the most bothersome tone is a bit quieter (around 20%) compared to before I started the study. It's not a game changer, but on the other hand, I am coping better than before. Maybe it's just due to habituation, who knows?
No sounds were used, or at least none that I could consciously perceive (this is what they told me when I asked about it). What kind of sounds did you experience?
Could I ask you to share your experience with the second phase to see if there have been any changes?
Thanks!
Thank you for your response.Hello @Mathilda,
No sounds were used, or at least none that I could consciously perceive (this is what they told me when I asked about it). What kind of sounds did you experience?
Could I ask you to share your experience with the second phase to see if there have been any changes?
Thanks!
No sound at all? That's interesting.
My experience has been a bit different. During the first cycle, I noticed a sound resembling white noise. I still suspect that this was the cycle where the actual treatment occurred.
Now, I am hearing "beeps" at different frequencies.
I will let you know how things turn out once the second cycle is completed.
MemberSystematic review:
pubmed.ncbi.nlm.nih.gov
The efficacy of transcranial random noise stimulation in treating tinnitus: a systematic review - PubMed
The evidence for the effects of tRNS on people with chronic non-pulsatile tinnitus is promising. Administering tRNS with an intensity of 1-2 mA, high-frequency (101-650 Hz), using a 35 cm² electrode size over the auditory cortex and DLPFC, for 20 min with eight sessions may demonstrate the...
pubmed.ncbi.nlm.nih.gov
Hello @Arnaudswiss,Hello @Mathilda,
No sounds were used, or at least none that I could consciously perceive (this is what they told me when I asked about it). What kind of sounds did you experience?
Could I ask you to share your experience with the second phase to see if there have been any changes?
Thanks!
My second cycle is complete.
As expected, I did not experience any improvement in my tinnitus. It feels like my tinnitus is back to baseline, with the same loudness as before my participation in the study.
At the end of December, I will find out during which cycle I received the actual treatment.
How are you doing? Have you started round two? If so, what kind of sound are you being presented with?
Hello @Mathilda,
I'm sorry to hear that you didn't experience any improvement.
I won't report here again, as I've decided not to participate in the second cycle. I live very far from Zurich, and I'm quite certain that I received the actual treatment during the first cycle.
By the way, have you ever considered Neurofeedback? There have been some promising studies, and that's what I'm trying now (I just started).
Wishing you all the best.
Kindly.
I urge you to reconsider. Hundreds of millions of people with tinnitus rely on the integrity of researchers and participants. Without this integrity, progress toward new treatments will not be possible.
In a clinical trial, it is essential that you cannot distinguish between the placebo and intervention arms.
That said, I respect your free will.
I'm not sure I get your point 100%. I made an assumption. I can be right, I can be wrong. Of course, I haven't been told anything by the research team. So, I don't see how I'm going against any integrity standards here.
Kindly.
Clinical trials require both placebo and intervention groups to succeed. When participants drop out, it becomes more challenging for researchers to gather meaningful results. This can lead to potentially effective treatments not reaching the market. While it is your right to withdraw, doing so for reasons that may seem self-centered could undermine the trial. For example, you were aware of the travel requirements when you applied. Similarly, withdrawing before the second phase of the trial because you believe you received the treatment arm first can appear questionable.
However, withdrawing due to significant and unforeseen circumstances, such as negative side effects, a major life event, or another serious reason, is completely understandable.
There are reasons I can openly share here and other reasons, primarily related to my health condition, that I discussed directly with the research team. I believe we should avoid making quick judgments about people's decisions. That being said, I understand your point and mostly agree with it.
@Arnaudswiss, I completely understand. I just wanted to clarify so that people reading this conversation don't get the impression that they can join a trial with the sole goal of receiving treatment, only to withdraw later if it doesn't seem effective. In some trials, participants may end up in the placebo group, and there is no crossover to the intervention group.
I recently applied for such a trial, fully aware that there was a 50/50 chance I would be assigned to the placebo group. I was prepared to continue either way because the placebo group is just as important as the intervention group.
I don't understand the rationale behind testing treatments on people who have had tinnitus for only a few weeks or months. At first, tinnitus is often very mild. In many cases, it either disappears on its own or becomes so faint that people adapt to it within a few months. If someone undergoing treatment experiences this natural adjustment, it can lead to misleading results. They might believe the treatment worked, when in reality, the tinnitus either resolved on its own or they simply acclimated to it.
Testing should focus on individuals who have had tinnitus for several years. These people are more likely to recognize a genuine reduction in tinnitus, and their condition is often more pronounced. Over time, tinnitus tends to worsen for various reasons. Someone who has had tinnitus for 10 or 15 years will rarely experience it at the same intensity as when it first began.
Testing should focus on individuals who have had tinnitus for several years. These people are more likely to recognize a genuine reduction in tinnitus, and their condition is often more pronounced. Over time, tinnitus tends to worsen for various reasons. Someone who has had tinnitus for 10 or 15 years will rarely experience it at the same intensity as when it first began.
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