How Much Would It Cost to See Dirk De Ridder?

[DebInAustralia]

I had a consult with Dirk just now. Lovely man. Easy to speak to.

He feels it is worth a trial of LDN. He recommended I add in NAC, and return to Quercetin (in spite of the link I read about it being possibly ototoxic).

If this doesn't work, he said a drug regime he uses quite successfully in some is:

1-2 mg Abilify, 0.5 mg Flupentixol, and 0.5 mg Clonazepam daily (=/- LDN). These he suggested because of my OCD/GAD.

We also discussed the use of a TENS machine on C2, which interacts with the DCN. If I get suppression from this, I could consider having the TENS surgically implanted. He said they have tested at 6, 10, 12, 18, 40, and 200 Hz - continuous stimulation mode till the skin goes 'prickly'. He mentioned in trials they have done, that some experienced complete suppression of their tinnitus, so the TENS is worth trialling. He also mentioned that trying the TENS with a clip on the tragus to stimulate the Vagus nerve might be worth trying, but I would be nervous about causing a bradycardia.

His Ketamine/brain stimulation trial is ongoing.

 

[IntotheBlue03]

I had a consult with Dirk just now. Lovely man. Easy to speak to.

He feels it is worth a trial of LDN. He recommended I add in NAC, and return to Quercetin (in spite of the link I read about it being possibly ototoxic).

If this doesn't work, he said a drug regime he uses quite successfully in some is:

1-2 mg Abilify, 0.5 mg Flupentixol, and 0.5 mg Clonazepam daily (=/- LDN). These he suggested because of my OCD/GAD.

We also discussed the use of a TENS machine on C2, which interacts with the DCN. If I get suppression from this, I could consider having the TENS surgically implanted. He said they have tested at 6, 10, 12, 18, 40, and 200 Hz - continuous stimulation mode till the skin goes 'prickly'. He mentioned in trials they have done, that some experienced complete suppression of their tinnitus, so the TENS is worth trialling. He also mentioned that trying the TENS with a clip on the tragus to stimulate the Vagus nerve might be worth trying, but I would be nervous about causing a bradycardia.

His Ketamine/brain stimulation trial is ongoing.

Hey @DebInAustralia, this is fascinating and extremely helpful. Just curious if you are seeking out any particular HCP for the TENS protocol? When I was in severe pain with my cervical I literally shaved the back of my head to be able to apply a TENS to the base of my skull for pain relief. This was long before it was in fashion and before I had tinnitus. Very curious how this works out for you.

I wish psychedelics weren't part of future research, I don't know how I will be able to bring myself to sit through mind altering treatments but I guess anything is better than the noise if proven to work?

 

[Uklawyer]

@DebInAustralia, thanks for this - there is quite a bit to digest there.

I guess you might take a bit of time to consider which path to take.

 

[IntotheBlue03]

@DebInAustralia, thanks for this - there is quite a bit to digest there.

I guess you might take a bit of time to consider which path to take.

Already in touch with my somatic physical therapist and getting an undershave to try the TENS unit on C2. Wonder what I can dig up on the forum in regards to this.

 

[Uklawyer]

@IntotheBlue03, well done. Is C2 that high?! I thought you had the Alpha-Stim?? You are getting a TENS unit as well?

From a quick look on here:

Transcutaneous electrical nerve stimulation (TENS) of upper cervical nerve (C2) for the treatment of somatic tinnitus

Resolution of long Standing tinnitus following radiofrequency ablation of C2-C3 medial branches - A case report

 

[IntotheBlue03]

@IntotheBlue03, well done. Is C2 that high?! I thought you had the Alpha-Stim?? You are getting a TENS unit as well?

From a quick look on here:

Transcutaneous electrical nerve stimulation (TENS) of upper cervical nerve (C2) for the treatment of somatic tinnitus

Resolution of long Standing tinnitus following radiofrequency ablation of C2-C3 medial branches - A case report

Fantastic, thanks @Uklawyer! Hoping PRP can help me avoid radio frequency ablation. All those procedures were on the table before I found regenerative medicine.

 

[Uklawyer]

@IntotheBlue03, Alpha-Stim & TENS unit?

 

[IntotheBlue03]

@IntotheBlue03, Alpha-Stim & TENS unit?

Yes sir, I'm honestly losing a little confidence in the Alpha-Stim, which is just for anxiety, as I really haven't experienced any effect, not even placebo effect from it yet. We will see. I'm doing 3 sessions daily, and am on day 4. They advised anxiety should respond quicker than any other condition.

The TENS would exclusively be for testing tinnitus in C2. That I won't be doing until end of next week separate from Alpha-Stim.

 

[DebInAustralia]

just checking in to report I've had no spikes since starting LDN 2 weeks ago and I quickly ramped up to 5 mg in days.

Hey, are you still taking the LDN? If so, what dose? Maybe this is why your tinnitus is now a lower volume?

 

[EDDTEKK]

Hi @DebInAustralia, are you taking the Abilify already? Dr. De Ridder also suggested it to me.

 

[IntotheBlue03]

Hey, are you still taking the LDN? If so, what dose? Maybe this is why your tinnitus is now a lower volume?

Hi @DebInAustralia, yes been on it for 2 months @ 4.5 mg and I agree at this point I do think it is what has lowered the tinnitus. It's just becoming more clear to me especially with these other issues that I have something autoimmune going on. I talked to an expert in SGB yesterday who advised while my case is rare that if I had something else neurological/autoimmune going on (say MS for example) that could have resulted in the adverse effects I'm experiencing. Wish I never got it either way at this point. My eyes just don't follow my movements so it's like walking around in a funhouse.

I highly recommend the LDN for you, Deb.

 

[DebInAustralia]

Hi @DebInAustralia, are you taking the Abilify already? Dr. De Ridder also suggested it to me.

No I'm not.

Are you taking it yet?

 

[EDDTEKK]

Are you taking it yet?

I will visit my GP in 3 weeks and then try it. I don't expect much but let's see...

 

[Hottopic29]

Anyone try TENS and find it helps?

 

[Christiaan]

I had my appointment with Dr. De Ridder today and here are some notes that I'd like to share with all of you:

- Concerning the HD-tPNS/Ketamine trial, Dr. De Ridder is somewhat disappointed in the results. Some people mentioned that they noticed a reduction or habituated more easily to their tinnitus, but generally the results are not what the doctor had hoped for. He's planning to adjust the intervention and he hopes that he can continue with this new project at the end of the year.

- Concerning his involvement in the Neurosoft Bioelectronics projects, he mentioned he played a part in the conceptual development of the implantable electrode device. He also added that the people at Neurosoft are still debating whether or not to continue with soft implantable electrodes or something else. Another thing worth mentioning is that Dr. De Ridder doesn't know when the trial for this device will start.

- Concerning the new bimodal device of TU Delft, Dr. De Ridder is working on a readjustment of the device. He expects/hopes that the device is ready in May for a future trial.

- Dr. De Ridder mentioned that he is also collaborating with other scientists on a new neuromodulation device that is based on the principles of the Bayesian model. Neuroelectronics (the developer of Starstim devices) is responsible for the technical development of this new device. Dr. De Ridder expects to receive an update from Neuroelectronics in May about the current developments. For a bit more info about the device, see: → Talk to the brain in a language it understands: multifocal network neuromodulation

 

[TomBradyGOAT]

I had a consult with Dirk just now. Lovely man. Easy to speak to.

He feels it is worth a trial of LDN. He recommended I add in NAC, and return to Quercetin (in spite of the link I read about it being possibly ototoxic).

If this doesn't work, he said a drug regime he uses quite successfully in some is:

1-2 mg Abilify, 0.5 mg Flupentixol, and 0.5 mg Clonazepam daily (=/- LDN). These he suggested because of my OCD/GAD.

We also discussed the use of a TENS machine on C2, which interacts with the DCN. If I get suppression from this, I could consider having the TENS surgically implanted. He said they have tested at 6, 10, 12, 18, 40, and 200 Hz - continuous stimulation mode till the skin goes 'prickly'. He mentioned in trials they have done, that some experienced complete suppression of their tinnitus, so the TENS is worth trialling. He also mentioned that trying the TENS with a clip on the tragus to stimulate the Vagus nerve might be worth trying, but I would be nervous about causing a bradycardia.

His Ketamine/brain stimulation trial is ongoing.

For some reason I could tell you have OCD. I do too. One sign is how well researched the person is. I will mention that I tried Abilify. Go real slow or start at the smallest amount. It didn't work for me and I got uncontrollable intense blinking. It was so hard to explain. Not Akathasia but some movement disorder. It went away after I stopped. Klonopin does have anti-OCD properties that are hard to explain for a benzo. But again here I am at 12 mg Valium now trying to get off benzos.

OCD is a tough one to get help with. SSRIs are awful for me, Anafranil has too many side effects. I just have a huge problem with psychiatrists peddling Serotonin good/dopamine bad for OCD. It is untrue. There would be a better success rate if it was that simple. Of course Ketamine was great but very addictive and worsened tinnitus in higher doses. It is as close to a "cure" as I could feel for my thoughts.

 

[Ela Stefan]

For some reason I could tell you have OCD. I do too. One sign is how well researched the person is. I will mention that I tried Abilify. Go real slow or start at the smallest amount. It didn't work for me and I got uncontrollable intense blinking. It was so hard to explain. Not Akathasia but some movement disorder. It went away after I stopped. Klonopin does have anti-OCD properties that are hard to explain for a benzo. But again here I am at 12 mg Valium now trying to get off benzos.

OCD is a tough one to get help with. SSRIs are awful for me, Anafranil has too many side effects. I just have a huge problem with psychiatrists peddling Serotonin good/dopamine bad for OCD. It is untrue. There would be a better success rate if it was that simple. Of course Ketamine was great but very addictive and worsened tinnitus in higher doses. It is as close to a "cure" as I could feel for my thoughts.

How can you say you have OCD? Can't trust psychiatrists.

Can Ketamine truly lower tinnitus? Can it be used as a maintenance medicine to keep tinnitus down?

My tinnitus most likely came from a very bad neuropathy in the middle ear and dry inflammation. It's just a sort of electrical fizzing in the whole head, which can go down to the ears at times or go full blast roaring all over. And it's very reactive.

I was thinking if Ketamine would work for a long time or maybe even make it softer from more doses.

Have you ever tried Keppra?

Thanks so much!

 

[Roger79]

I had a consult with Dirk just now. Lovely man. Easy to speak to.

He feels it is worth a trial of LDN. He recommended I add in NAC, and return to Quercetin (in spite of the link I read about it being possibly ototoxic).

If this doesn't work, he said a drug regime he uses quite successfully in some is:

1-2 mg Abilify, 0.5 mg Flupentixol, and 0.5 mg Clonazepam daily (=/- LDN). These he suggested because of my OCD/GAD.

We also discussed the use of a TENS machine on C2, which interacts with the DCN. If I get suppression from this, I could consider having the TENS surgically implanted. He said they have tested at 6, 10, 12, 18, 40, and 200 Hz - continuous stimulation mode till the skin goes 'prickly'. He mentioned in trials they have done, that some experienced complete suppression of their tinnitus, so the TENS is worth trialling. He also mentioned that trying the TENS with a clip on the tragus to stimulate the Vagus nerve might be worth trying, but I would be nervous about causing a bradycardia.

His Ketamine/brain stimulation trial is ongoing.

Hello, how are you now? On the medication combo? If so, how do you feel? Does it lower the tinnitus?

I am also searching for something for my severe tinnitus. I am on 7.5 mg Mirtazapine in the evening and that helps with sleep. But at daytime it is sometimes a hell on earth.

 

[TomBradyGOAT]

How can you say you have OCD? Can't trust psychiatrists.

Can Ketamine truly lower tinnitus? Can it be used as a maintenance medicine to keep tinnitus down?

My tinnitus most likely came from a very bad neuropathy in the middle ear and dry inflammation. It's just a sort of electrical fizzing in the whole head, which can go down to the ears at times or go full blast roaring all over. And it's very reactive.

I was thinking if Ketamine would work for a long time or maybe even make it softer from more doses.

Have you ever tried Keppra?

Thanks so much!

How do I know I have OCD? How about everyday before tinnitus, having intrusive thoughts about hurting your family or having relationship questions, then spending endless hours trying to look for reassurance.

I have tried Keppra, but for other reasons. It didn't do anything.

Ketamine at lower doses didn't raise my tinnitus. When I started getting into a daily habit of about 400-600 mg troches, it made it worse. Ketamine addiction/tolerance is really tricky.

 

[Ela Stefan]

How do I know I have OCD? How about everyday before tinnitus, having intrusive thoughts about hurting your family or having relationship questions, then spending endless hours trying to look for reassurance.

I have tried Keppra, but for other reasons. It didn't do anything.

Ketamine at lower doses didn't raise my tinnitus. When I started getting into a daily habit of about 400-600 mg troches, it made it worse. Ketamine addiction/tolerance is really tricky.

OCD can only be overthinking about something... still so many people can have OCD and no tinnitus!

 

[TomBradyGOAT]

OCD can only be overthinking about something... still so many people can have OCD and no tinnitus!

I think I was speaking to Deb at the beginning. Really so lost on what point you are trying to make. Sorry I think there is a translation issue going on or something.

 

[Christiaan]

New article by Dr. De Ridder. Interesting stuff about the possible interaction of three brain networks in the manifestation of tinnitus. It's an elaboration of his earlier works on the Bayesian Brain Model.

Tinnitus and the triple network model: a perspective (De Ridder et al., 2022)

Abstract

Tinnitus is defined as the conscious awareness of a sound without an identifiable external sound source and tinnitus disorder as tinnitus plus associated suffering. Chronic tinnitus has been anatomically and phenomenologically separated into three pathways: a lateral "sound" pathway, a medial "suffering" pathway, and a descending noise-canceling pathway.

Here, the triple network model is proposed as a unifying framework common to neuropsychiatric disorders. It proposes that abnormal interactions among three cardinal networks, the selfrepresentational default mode network (DMN), the behavioural relevance-encoding salience network (SN) and the goal-oriented central executive network (CEN), underlie brain disorders. Tinnitus commonly leads to negative cognitive, emotional, and autonomic responses, phenomenologically expressed as tinnitus-related suffering, processed by the medial pathway. This anatomically overlaps with the SN, encoding the behavioral relevance of the sound stimulus. Also, chronic tinnitus can become associated with the self-representing DMN and becomes an intrinsic part of the self-percept. This is likely an energy-saving evolutionary adaptation, by detaching tinnitus from sympathetic energy-consuming activity. Eventually, this can lead to functional disability by interfering with the CEN.

In conclusion the three pathways can be extended to the triple network model explaining all tinnitus associated co-morbidities. This paves the way for the development of individualized treatment modalities.

 

[Ela Stefan]

Yes sir, I'm honestly losing a little confidence in the Alpha-Stim, which is just for anxiety ,as I really haven't experienced any effect, not even placebo effect from it yet. We will see. I'm doing 3 sessions daily, and am on day 4. They advised anxiety should respond quicker than any other condition.

The TENS would exclusively be for testing tinnitus in C2. That I won't be doing until end of next week separate from Alpha-Stim.

Can you buy Alpha-Stim on your own and just use it by yourself? Or do you need a doctor to guide you?

Where can it be ordered? Thank you!

 

[Nick47]

3 weeks back, I paid €85 for a 40-minute consultation with Dr. Ridder. I didn't learn anything new and apart from the usual medications in a cocktail, he suggested Cyclobenzaprine for my somatic component.

I felt a bit underwhelmed really as he was late and not prepared (I had sent an audiogram and an MRI a week prior to Brai3n). He kind of repeated what we've seen in interviews with him.

I'm beginning to think he's become too philosophical and theory-driven and less research focused. Compare that to getting down and dirty in the Shore Lab; animal studies and some hard graft early on understanding the physiology.

I feel he is dreaming up ideas that come from very loose findings. He clearly has a great knowledge of the brain but seems resigned to the fact we need better technology to advance the pathophysiology.

 

[Nick47]

Concerning his involvement in the Neurosoft Bioelectronics projects, he mentioned he played a part in the conceptual development of the implantable electrode device. He also added that the people at Neurosoft are still debating whether or not to continue with soft implantable electrodes or something else. Another thing worth mentioning is that Dr. De Ridder doesn't know when the trial for this device will start.

- Concerning the new bimodal device of TU Delft, Dr. De Ridder is working on a readjustment of the device. He expects/hopes that the device is ready in May for a future trial.

- Dr. De Ridder mentioned that he is also collaborating with other scientists on a new neuromodulation device that is based on the principles of the Bayesian model. Neuroelectronics (the developer of Starstim devices) is responsible for the technical development of this new device. Dr. De Ridder expects to receive an update from Neuroelectronics in May about the current developments.

Well it's May 2023, where are we now with Neurosoft and TU Delft?

 

[Christiaan]

Well it's May 2023, where are we now with Neurosoft and TU Delft?

Sadly, I haven't received any news about Neurosoft as of late.

However, I've heard from a source that there's some news about the TU Delft device. Brai3n is currently conducting tests with the new device. 20 patients are involved in this study. They started the clinical trial in March or April, if I'm not mistaken.

 

[Nick47]

Sadly, I haven't received any news about Neurosoft as of late.

However, I've heard from a source that there's some news about the TU Delft device. Brai3n is currently conducting tests with the new device. 20 patients are involved in this study. They started the clinical trial in March or April, if I'm not mistaken.

Hey @Christiaan, thanks for the prompt reply. From what I gather, Neurosoft are a long way off. I suspect they have not developed the device yet.

With TU Delft, they received a small grant of a few thousand, presumably to top up existing funding to run this small trial. My understanding is that Prof. De Ridder has built something along the lines of Auricle and is building off the research conducted over the years at the Shore Lab. Perhaps a rival to Auricle?

 

[Christiaan]

Hey @Christiaan, thanks for the prompt reply. From what I gather, Neurosoft are a long way off. I suspect they have not developed the device yet.

With TU Delft, they received a small grant of a few thousand, presumably to top up existing funding to run this small trial. My understanding is that Prof. De Ridder has built something along the lines of Auricle and is building off the research conducted over the years at the Shore Lab. Perhaps a rival to Auricle?

I think you're right about Neurosoft. I remember a discussion with Dr. De Ridder from about a year ago that Neurosoft wasn't entirely sure to use soft implantable electrodes or something else for a potential tinnitus treatment. A clinical trial could seem way off if they're still discussing the design of the new device.

I have received an article from TinnitusHouse (an organisation that works closely with Brai3n and universities concerning tinnitus research) a few days ago about the TU Delft device. In this article, it is mentioned that they use headphones and stick-on electrodes. In a way, that seems similar to Susan Shore's Auricle. Hopefully we'll know soon enough if it is effective in treating tinnitus.

Here's the Dutch article about the TU Delft device in case you're interested:

https://tinnitushouse.nl/nl/bimodale-stimulatie/

 

[Christiaan]

However, I've heard from a source that there's some news about the TU Delft device. Brai3n is currently conducting tests with the new device. 20 patients are involved in this study. They started the clinical trial in March or April, if I'm not mistaken.

Regarding my earlier post about Brai3n/TU Delft currently conducting a trial for the new device: sorry for the miscommunication. Brai3n and TU Delft are still in talks about the approval & development of the device for clinical trials. I clearly made an error in assuming that a friend of someone I know is involved in a trial that did not take place.

 

[StoneInFocus]

How easygoing is De Ridder in prescribing medication? Is he open to patients' suggestions in that regard? Anyone with noxacusis had a consult with him?

Curious to know what he would think about that new study on HCN2 channels and tinnitus.

Maybe a small trial with Ivabradine, like he did with Flupirtine, would be something he'd consider.