Member50% reduction. I have no idea if it's permanent, as I don't have a placebo clone of myself.
Why was his video distressing? Was it the 25-minute one where he discusses the three pathways?
Antidepressants (SSRIs, SNRIs, MAOs, TCAs, TeCAs)
- Thread starter Pat
- Start date
Why was his video distressing? Was it the 25-minute one where he discusses the three pathways?
Yeah, it was the 25-minute one.
It was distressing for two specific reasons:
I already knew beforehand it was a network disorder. Still, Dr. Dirk De Ridder says if you attack it with a selective drug and hit one part of the network, the signal travels around and finds other ways to transmit itself, so it is still perceived by your brain after a while. That's why a cocktail is recommended to abolish the entire network. Perhaps this is also why Retigabine lost effectiveness in many users after a while.
The second reason is specific to the kind of tinnitus I have; he mentions neuroinflammation, the neurological changes it brings, and specific epigenetic changes brought on by drugs or other stuff, and details potential treatments like taking antioxidants. The same things are discussed on withdrawal and visual snow syndrome forums. Hence, I'm not a stranger to these concepts, but with visual snow syndrome and tinnitus, those suggested treatments have limited to no efficacy based on the users who tried them.
There's much more I could say on this subject alone, but I don't want to hijack the thread.
Pretty sure that the HCN2 drug won't be for me because it does not cross the blood-brain barrier, and the Kv7 drug (my last hope...) will have limited efficacy, if it has any.
My tinnitus these days is heavily somatic and can be influenced by jaw and neck movements. It gets loud when I press on my chin, but it is not tonal at all. It sounds like an electrical hiss and feels like it is coming from the back of my neck. It is close to the left ear but can be heard in both ears. It likes to travel around depending on which ear I sleep on.
The way our brains work has been altered. Nothing is coming out to reverse these changes, and the upcoming drugs will have limited efficacy (perhaps none), which is why I'm distressed.
My taken-as-needed cocktail:
- 1 Deanxit or 5 mg Prochlorperazine
- 300 mg Gabapentin
- 0.75 mg Clonazepam
- 8 mg Betahistine
- 22.5 mg Mirtazapine
- 300-600 mg Gabapentin
- 600 mg Alpha-Lipoic Acid
- 0.5 mg-1 mg Clonazepam
- 1 Deanxit
- 2 mg Aripiprazole
- +/- Cyclobenzaprine
- +/- 5 mg LDN
Dr. Hamid Djalilian's daily cocktail:
- 10 mg - 50 mg Nortriptyline
- Topiramate
- 400 mg Magnesium BID
- Vitamin B2
- +/- Gabapentin
- CBT + Sound Therapy
- Clonazepam
- Gabapentin
Have hope. Retigabine probably worked for some because it was a cocktail in itself. This is part of why I think selective Kv7.2/3 channel openers will fall flat. I know some people have tried them to no effect and had the same side effects as Retigabine.
Flupentixol is the most important part of Deanxit. Dopamine is involved in perception, and Prof. Rauschecker says it is involved in the gating.
I think future drug treatments will involve a cocktail anyway, like for many diseases, unless HCN2 drugs are highly effective.
In fact, most diseases are treated with several interventions anyway.
I'd take it with a pinch of salt. He makes unfounded comments about Dr. Shore's device that aren't accurate or fair, in my opinion, and almost dismisses her idea of bi-modal stimulation as a treatment. Yet he and his buddy from another university are putting together something that looks like it was made for a sixth form electronics project based on the same principle.
I wouldn't even call the War on Tinnitus a mind map of ideas, more a brain fart.
Aripiprazole is a dopamine antagonist, and Prof. Rauschecker stated that dopamine is responsible for gating. So, is it the case of too much dopamine, then? Or is it a case-by-case experiment trying both agonists and antagonists to see what happens? Mucuna is a proven natural supplement (studies done) for increasing dopamine.
Did they get any of the visual symptoms? Was the product official or compounded?
I can't do cocktails that act on the serotonin, dopamine or noradrenaline. I'm kindled. I get paradoxical rections on most drugs now.
I was banking on the NKCC1 and Kv7 stuff, but the later papers and developments suggest they are dead ducks.
It seems like there is no way out for me.
Update on the Amitriptyline 10 mg per day:
After five days, I can report no change in tinnitus; side effects appear to be a disrupted gut and a left-sided headache with some minor irritation in my left ear, similar to after receiving the COVID-19 vaccine. Hopefully, it is a good sign that there is irritation, which will lead to healing.
After five days, I can report no change in tinnitus; side effects appear to be a disrupted gut and a left-sided headache with some minor irritation in my left ear, similar to after receiving the COVID-19 vaccine. Hopefully, it is a good sign that there is irritation, which will lead to healing.
- Oct 18, 2023
- 24
- Tinnitus Since
- 09/2023
- Cause of Tinnitus
- Club visit/loud music
Do you think there are risks in taking Deanxit alone without Clonazepam? I also got it prescribed by Dr. De Ridder but I am a bit scared about the drug given the number of countries that have decided not to market it. What do you think helps you the most between the two?
Most people are fine on Deanxit alone. The cocktail just works better, I guess. Many diseases have a combination treatment. Dr. De Ridder prescribed Aripiprazole, too, but I don't have any of that. It was the lowest dose, like 2 mg. Try it for a month and see.
You could take 0.25 mg of Clonazepam at night if you are worried about side effects.
I am a very severe case. Tinnitus is only a fraction of my problems. SSRIs caused encephalopathy for me, I'm sure. I will try to get a qEEG or SPECT soon.
SSRIs are a scam.
RunningMan
Member
- May 8, 2023
- 557
- Tinnitus Since
- HiFrq ~2000, Increased 2022, LoFrq ~2020
- Cause of Tinnitus
- Loud noise - clubs, stereos, cycles, headphones, engines,etc
I took SSRIs for eight weeks for anxiety, not for tinnitus! All they did was cause me permanent stomach pain, starting from the first pill and continuing over seven months since weaning off. I don't know if that's covered in the video - I didn't watch it. Also, they never helped with anxiety through two weeks of taking them.
Alternatives to SSRIs are SNRIs, TCAs, and Mirtazapine.
Alternatives to SSRIs are SNRIs, TCAs, and Mirtazapine.
- Oct 31, 2020
- 1,244
- Tinnitus Since
- 9-17-2020
- Cause of Tinnitus
- turning everything up to 11
- Jul 25, 2023
- 120
- Tinnitus Since
- 02/2023
- Cause of Tinnitus
- Night club in Feb ‘23, MRI in Feb '24, drummer since age 15
Are you still on a regiment of Mirtazapine and Gabapentin that's helping? What dosages?
I'm on Nortriptyline and Gabapentin now per Dr. Hamid Djalilian's protocol. My hyperacusis is improving a bit, but my tinnitus is about the same. I took Gabapentin instead of Topiramate or Lamictal, which were the other options given to me.
Trust me when I say this:
SNRIs are worse. They are more activating and they touch more receptors.
TCAs are bad as well.
You don't want to mess around with your serotonin receptors in any way, shape, or form. There's no difference between SSRIs and SNRIs in the damage they cause.
As for Mirtazapine, it has directly resulted in the deaths of many known members on the forums. If you get an adverse reaction from Mirtazapine and get insomnia, akathisia, etc, it is going to take six years to get around 5-6 hours of sleep. I'm sure I'm next to die from it; it is the worst drug you can put yourself on, other than antipsychotics.
Mirtazapine and Paroxetine cause the most damage because of their indirect action on dopamine. These pills cause the problems they were supposedly made to fix.
Yes. Mirtazapine 22.5 mg/day and Gabapentin ~600 mg/day. When my tinnitus is bad, I combine Clonazepam, Betahistine, and Deanxit - or Prochlorperazine.
What doses are you on, and what type of hyperacusis symptoms did you have? Are you taking any supplements?
I aim to taper down the Mirtazapine to 15 mg at night and add 10 mg of Nortriptyline in the morning.
- Jul 25, 2023
- 120
- Tinnitus Since
- 02/2023
- Cause of Tinnitus
- Night club in Feb ‘23, MRI in Feb '24, drummer since age 15
In February 2023, after a night out at a club, I developed unilateral hyperacusis in my right ear. Over time, my tinnitus would fade, but the hyperacusis has persisted. I experience mild burning and occasional stabbing sensations if I am exposed to excessive noise. Otherwise, it is mostly loudness hyperacusis. In July 2023, my hyperacusis worsened after taking three doses of Auvelity (one pill), a compound drug containing Wellbutrin. In August 2023, I started taking Mirtazapine and Fluvoxamine. These medications helped with sleep, but my brain tinnitus returned and has been severe since starting that combination.
I discontinued Fluvoxamine but continued taking a low dose of 7.5 mg Mirtazapine for sleep, along with 100-200 mg of Gabapentin as needed until May 2024.
In June 2024, I stopped taking Mirtazapine and started on Nortriptyline, beginning at 60 mg and increasing to 75 mg. The side effects were not too bad, starting at 60 mg, but included some sexual side effects. I also increased my Gabapentin to 900 mg in divided doses. I am not sure if I am feeling any benefits for my tinnitus and hyperacusis. I thought I might have experienced some improvement in my hyperacusis, but good days are rare. My tinnitus is still severe, and my hyperacusis is very apparent most days. My mood has deteriorated because I have become a hermit due to the hyperacusis.
I am considering trying Topiramate, as recommended by Dr. Djalilian, instead of Gabapentin, although I know it is a difficult drug to tolerate. Lyrica and Lamictal were also options provided to me, in addition to Gabapentin and Topiramate. I may stop taking Nortriptyline if the sexual side effects do not ease up and if I do not see any real benefit for my hyperacusis and reactive tinnitus. However, I might need to go higher than the recommended 75 mg to realize any benefit. Clomipramine works for hyperacusis for some people at high dosages, and the same logic might apply to Nortriptyline.
- Nov 6, 2014
- 516
- 41
- Tinnitus Since
- 10/2014, worsened 5/2024
- Cause of Tinnitus
- Ear infection / Long-term Noise ; Acoustic Trauma
FWIW, I was on Sertraline (Zoloft) from 2017 until 2021 and did not have major adverse effects. I did go off when I felt like I wanted to regain a bit of my "spark," which felt cozy but flat when I was on it. My original tinnitus was getting better then, and by the time I got off in 2021, my tinnitus became very mild. I have no idea if the two are related, but by 2017, it had become something that had rarely hindered me at all. I'm hoping I can get back there sooner rather than later...
I have heard of a few case reports about Lamictal that it can offer benefits to some people. Lyrica is basically just an extended-release type of Gabapentin. Maybe you should keep the Nortriptyline where it is dose-wise and add Lamictal?
- Jul 25, 2023
- 120
- Tinnitus Since
- 02/2023
- Cause of Tinnitus
- Night club in Feb ‘23, MRI in Feb '24, drummer since age 15
Where are you at on the Dr. Djalilian protocol? What's the principal issue you're trying to address now? Tinnitus or hyperacusis? Bilateral or unilateral?
I'll ask his nurse practitioner about it (or I may email him directly). The real issue here is the hyperacusis. It just feels like something is wrong in that right ear. I had an SPG block (AKA trigeminal nerve block) this morning with a pain management physician to see how that goes for hyperacusis. So far, there is not much to report, but I took 0.25 mg of Clonazepam for the procedure and have had little to no hyperacusis this morning coming off my Gabapentin dosage last night + this morning's Clonazepam.
It sucks I can't take Clonazepam regularly. Is there any condition in the drug's history where it was appropriate to take it daily? Would noxacusis/hyperacusis be one of them? I can feel it wearing off and the hyperacusis creeping back up.
- Nov 6, 2014
- 516
- 41
- Tinnitus Since
- 10/2014, worsened 5/2024
- Cause of Tinnitus
- Ear infection / Long-term Noise ; Acoustic Trauma
My tinnitus is unilateral. My biggest issue initially was how my tinnitus sound would react to external stimuli. After about three months and about a month of the nutriceutical protocol, the reactivity issue seems to be getting better. It is not resolved by any means, but it is more manageable. I think my case may be unique to most here because, except for a few spikes, my tinnitus has basically been located only in my left ear.
I also admit the hardest / least followed part of the protocol for me is the migraine diet, partially because I am not totally sure food affects my tinnitus one way or another. Also, I really love coffee, lol. I have gone down to one cup per day, though, which probably has other benefits.
At any rate, I am learning more about supplements and what they could do for me holistically.
RunningMan
Member
- May 8, 2023
- 557
- Tinnitus Since
- HiFrq ~2000, Increased 2022, LoFrq ~2020
- Cause of Tinnitus
- Loud noise - clubs, stereos, cycles, headphones, engines,etc
I'm not recommending anyone jump on them if they can get by without them, but those are some alternatives to SSRIs.
I was on Nortriptyline for months at 50 mg and didn't have as much of a problem with it compared to when I took SSRIs.
I hadn't mentioned Wellbutrin, but it doesn't have much of an impact on the serotonin you mentioned.
We have discussed Mirtazapine before:
→ Remeron (Mirtazapine) — Anything Safer for Sleep & Depression?
→ Bupropion-associated movement disorders
Not only is Bupropion ototoxic (a member has been posting his recovery experience on Tinnitus Talk for the past four years), but it might give you things like akathisia and other stuff.
I don't understand why people still want to gamble with these chemicals.
Check out the antipsychiatry and akathisia subreddits for more info.
I had another sleepless night with full-blown akathisia. I know I'm nearing the end of my life.
RunningMan
Member
- May 8, 2023
- 557
- Tinnitus Since
- HiFrq ~2000, Increased 2022, LoFrq ~2020
- Cause of Tinnitus
- Loud noise - clubs, stereos, cycles, headphones, engines,etc
Like I said, I'm not recommending it or any of the others if you can get by without it. Every medication I ever look up shows a long list of possible side effects, but sometimes medications are unavoidable. You said you don't know why they still want to gamble with these medications. Still, I can understand why someone would take a chance with antidepressants if they are experiencing debilitating anxiety or depression. Also, some of them are used for other issues like insomnia, neuropathic pain, and migraine. Some people have positive experiences with them, including on Tinnitus Talk.
Some alternatives for anxiety, which aren't antidepressants, include benzodiazepines (like Clonazepam & Lorazepam), Buspirone, Gabapentin, and Pregabalin. But there are risks with those, too.
I am sorry to hear what you are going through. There are different levels of suffering here. I have had nights with no sleep, as well. I'm using two medications now and still don't get enough sleep.
I haven't read those particular subreddits, but I have seen some of the horror stories about antidepressants and benzodiazepines elsewhere.
- Oct 31, 2020
- 1,244
- Tinnitus Since
- 9-17-2020
- Cause of Tinnitus
- turning everything up to 11
Cymbalta can be a tough drug to start for a lot of people. It has a higher reported rate of initial side effects. I have tried it in the past, pre-tinnitus, and I could not get over the initial side effect hump.
Whether it affects your tinnitus or not is really an individual thing. Some people take these medications with no effect on their tinnitus, while others aren't so fortunate. You'll only know if you try, but the stakes can be quite high.
Anecdotally, I have tried a few antidepressants, and while they spiked my tinnitus initially, everything went back to baseline once I discontinued the medication. I do always follow a few simple rules, though:
- Always start at the lowest possible dosage. I will cut the tablet into even smaller doses if the tablet can be cut.
- Always slowly taper up.
- Always taper down at the first sign of increased tinnitus - I never discontinue cold turkey unless I'm already at the lowest possible dosage.
Nortriptyline raised my resting heart rate and gave me awful dry mouth, but it did get me through a suicidal phase of my tinnitus. When I discontinued it, my tinnitus somehow felt a little quieter.
When I tried to go back on it a second time it reactivated my PVCs and PACs (premature ventricular and atrial contractions) that I had suffered from in the past, so now it's not an option for me.
