Hyperacusis Cured/Reduced by Clomipramine

I just took my Nortriptyline now again to hopefully help this current setback. I might go to the doctor soon to get Clomipramine but driving hurts for now.

How much sound do you expose yourself to every day now? Do you wear earplugs every time you leave the house? Have you been to the cinema or restaurant/bar?

I do have hope for some regen medicine for our ailment though. It seems there is a lot of work going into it currently and all the early research does look very promising.

 

Those things are not on my list yet. I haven’t been to bars/restaurants since August 2021. I could barely tolerate two people talking back in May, so I don´t want to imagine what a full bar with music would do to my ears now. I'm not ready to risk a setback yet.

I try to expose my ears to sounds every day, and I haven’t used noise cancelling headphones/earplugs since about the end of June. Driving has been a problem for me as well. Last week I did a test drive on the highway (for the first time since August 2021). My hyperacusis seemed to be fine, but my tinnitus seemed to spike afterwards. Overall a great result as I was quite anxious.

Grocery shopping used to be pure torture for me. Now I can do that without hearing protection, and my ears feel fine even around refrigerators and freezers.

I try to walk or jog every day, and expose my ears to traffic. Most of the time my ears feel fairly comfortable, but I still cover my ears when I hear motorbikes/trucks. Also birds were a huge problem for me, but they are very quiet now.

Does Nortriptyline also help you with your tinnitus?

 

I went to a bar about a month ago and was ok the days after but it might have contributed to the current setback I'm in, even though I think it was because of my dog barking, and then adding in driving too.

My pain was mostly gone for a good while but it's worse than ever now. Going to just slowly recover again I guess. I have pain in my second ear now too, previously I had pain only in one ear.

I sit in a room with my fridge most of the day and I think the noise from it is causing me pain. I will probably need to move it to another room or just wear earmuffs all day, not sure.

Nortriptyline done nothing at all for my tinnitus. It did make me less anxious though so in that sense, it probably did help my tinnitus. I was still getting pain in my ear while taking it too but it was mostly mild pain.

I'm starting to think maybe I'm having this setback now just because I stopped taking the Nortriptyline. But that's probably not the case since I have ear fullness now too plus new pain in my other ear.

I am slightly better today. The burning pain wasn't there when I woke up so that's an improvement.

 

Good find. Any plans on giving Flomax a try? It's been two years since Jesse made the discovery and only @grate_biff and @Marin have seemed to try it, unfortunately with little results. On the positive side, improvements of their hyperacusis came about within a couple days of trying the stuff. Might be worth risking the side effects for a couple of days to see if it has any effect. What do you think?

 

I am desperate to get on Clomipramine. At 56, I have addressed my health problems, Type II diabetes and hypertension, but hyperacusis is going to drive me to suicide if something doesn't change soon. I'm not sure how much longer I can keep going with this demonic shrieking in my head (it's not quiet by any measure) and all sound is extremely painful.

Somehow I still work part-time at a library but I can no longer enjoy music at any volume unless I'm drinking. But then I wake up with even louder tinnitus. I am starting to think all I can do is find a way to exit. If Clomipramine works, maybe it will be the thing that saves me.

I feel like I am not done yet and am not suicidal. I want to keep living. I still actually enjoy some aspects of life, in spite of everything. I made a September 21 appointment with a neurologist back in May. I am going to beg and plead for this drug. If Clomipramine helps me, I will send @Trafalgar D a case of the best wine I can afford.

 

I know these feelings and that pain too well.

I keep my fingers crossed for you!

 

There are a lot of things we can try before we really start contemplating suicide tbh. Even if you might get some side effects from some drug, or need to take out a loan to get stem cell treatment, it's better than ending it all. Plus, even the worst cases usually improve over time.

Since you are already going to a neurologist, it might be worth your time asking him/her about peptides. Specifically, BPC-157 which some people have seen great results with their tinnitus. It's anti-inflammatory and stimulates repair of tissue and organs.

It is a new drug though and some people reported some bad side effects but it's something to have a conversation about at least. One person in another thread here reported some long lasting affects to mood and motivation and another had increased visual snow.

It's just that Clomipramine also has side effects and you would most likely need to continue using it forever whereas BPC-157 would probably only need a short course.

If you do ask you neurologist about this, please do let us know. I need to go see a neurologist myself, seems like they are the best specialist for most of us.

 

These hyperacusis patients in Germany are discontinuing Clomipramine after 1 to 3 years without relapse. So maybe it does not have to be forever. However, if I had to take a drug daily forever to improve things, I'm okay with that. I already feel like I'm on borrowed time, so what does it matter?

I intend to have an ongoing doctor-patient relationship with a neurologist. I should have initiated one years ago before things got so bad. I've had worsening tinnitus / hyperacusis for decades. I just have had no health insurance, and unfortunately, I live in America.

Thank you for mentioning BPC-157. I am looking into it.

 

I'm also almost at a point currently where I wouldn't mind taking any drug daily forever. I need to meet a neurologist too. I'm taking Nortriptyline right now but might as well swap to Clomipramine since they are very similar.

BPC-157 might have a lot of side effects though, it's still a research drug I think but some people reported great success with their tinnitus, while others worsened, so yeah.

 

Just wondering when you say they increased your tinnitus; when you stopped taking them, did your tinnitus revert back to its former state or has the heightened state become the new norm? Thanks.

 

It returned to the previous level after I stopped them.

 

It's on my list of things to try, but I'm currently exhausting a few other avenues first. I'd definitely be more inclined to try Flomax though than a tricyclic antidepressant. Clomipramine is one of the last things I'd try short of offing myself - it's a dirty drug and seems to have a plethora of effects, but I'm glad some people are getting relief from it.

 

The side effects really do put me off too. In the long run it can have a lot of mental effects and I don't like feeling artificially happy. Flomax does sound good too. Worth a shot at least.

I haven't heard of anyone with bad noxacusis ever trying stem cells. I might be the first to report on it. It's hard to know if it works too since it can recover naturally in many cases.

 

@Trafalgar D, how are you getting on with Clomipramine?

Are you still improving?

What about the side effects?

Would be nice to hear an update.

 

Hey, it’s been going well. I´ve basically achieved all of my goals that I set back in June/July. Last goal was driving on highways without earplugs which I have been practicing for a few weeks now.

My hyperacusis does not seem to cause any issues.

Pretty much everything sounds “normally” loud – so loudness hyperacusis seems to be gone. I write “seems to be” because I haven’t exposed my ears to loud events yet, and I have no idea how my ears will react.

I have not experienced pain hyperacusis since June.

I haven’t used hearing protection outside since June because I feel fine around traffic most of the time, but I do cover my ears when I hear motorcycles, ambulances etc.

Last week I got quite unlucky, as a car honked near me. My tinnitus has been louder since then, but it seems like my hyperacusis was not affected. So far, no setbacks.

I still use earplugs regularly when I cook, mostly because I´m worried about my tinnitus.

The biggest side effect of Clomipramine seems to be that it stops hyperacusis. I must say I don’t mind that. I still have the same minor side effects that I mentioned in the end of my very first post (dry mouth when working out, no insomnia, lower sex drive). They are insignificant in my opinion, and the only time I think about them is when people ask me about the side effects.

And I still have TTTS (I was hoping it would be gone by now).

 

I've now started on 20 mg of Clomipramine.

At 20 mg, I'm not expecting much to happen but I will slowly work my way up. Perhaps increase the dose by 20 mg every 2 weeks or something.

My GP said that Clomipramine can go up to 250 mg per day. However, I expect I will know way before then whether this is doing anything for me.

I will post updates as to how I get on.

 

Good luck! I’m continually reaching a ceiling of about 75% recovery that I can’t seem to overcome no matter what before I inevitably have a setback over and over.

I’m giving myself one more year to break through and if I’m still in the same place I’ll be trying Clomipramine as well. And if I have another major setback at any point, I’ll just start it immediately.

 

Do you have pain hyperacusis? And do you have tinnitus, too?

 

@chinup, have you tried incorporating Curable into your recovery program?

I feel like it has helped me a lot.

At a minimum, if it doesn't improve your symptoms, it makes you understand the nature of hyperacusis and what is going on with your nervous system. Furthermore, it provides you with tools to reduce anxiety and change your relationship to your symptoms. Perhaps Curable could help you break your 75% plateau.

@Jerad, the answer is yes to both of your questions. Pain hyperacusis and reactive tinnitus.

First day on Clomipramine. I started on 20 mg and took it during the day. I felt spaced out for a few hours and had dry mouth. Overall, not a great experience, but not a terrible experience considering the first few days will be the worst. Doctor advised me to start on 10 mg but I decided to jump the gun a bit and start with 20 mg since Clomipramine is in the same family as Amitriptyline and I have never had any side effects with that. Clomipramine definitely appears to hit me a lot harder than Amitriptyline. Will see how I get on.

 

Thanks for the tip. I’ll do some research on Curable. I believe there is a strong mental component to whatever is happening to me. For example, I am no longer able to imagine the sound of electric guitars without imagining the hyperacusis pain that would accompany it...

 

@chinup, an element of your hyperacusis is definitely 'psychosomatic' then, although I prefer the term 'mind-body syndrome' which comes from Curable.

I have learned some interesting things from Curable. For instance, the reason some people recover from hyperacusis and others get worse could be due to personality type. Turns out, chronic pain itself can make chronic pain worse. Imagine that, haha. Chronic pain literally feeds off itself and if you have a certain personality, you have a higher chance of your chronic pain making itself worse. Also, turns out fear and pain both come from the amygdala. Experiencing anxiety increases your pain, and experiencing pain increases anxiety. This is why breaking the brain hypervigilance state early on in hyperacusis is so important. I have made progress in breaking the hypervigilance state recently but it will take time after being on edge for 2 years.

Curable is definitely helping.

 

Day 5 update on Clomipramine

Experiencing quite bad heartburn. This is quite normal on these types of medications but if it doesn't subside, I'll have to stop taking the medication. If the heartburn goes away, I will definitely be able to continue as the other side effects are not that bad.

Other minor side effects:

• Dry mouth - only really notice it when working out.
• Delayed ejaculation - For some people, it improves after some time on the medication. For others, it doesn't improve until they stop the medication.

I am currently taking the medication a couple of hours before bed which is the recommended method of consumption.

I tried taking it during the day on day 1 and that was not a good experience. Felt very spaced out and found it difficult to focus. Almost like I was very, very stoned. I went for a walk outside and was looking at the sky in amazement lol.

If the heartburn doesn't subside and I stop the medication, I think I will try out Duloxetine next.

I only went up to 30 mg on Amitriptyline and regret doing so. I didn't think it was doing much for me which is why I stopped. However, after stopping I think it was actually helping a bit. I've also learned that realistically, you will need to get to 70 mg - 100 mg for this medication to do anything substantial. So stopping at 30 mg was probably not a good idea.

 

@KDMG - how bad is your pain hyperacusis? What kind of sounds bother you? And did Clomipramine affect your tinnitus at all?

 

@Jerad, I have moderate pain hyperacusis where a range of sounds bothers me.

No, Clomipramine did not affect my tinnitus. From what I understand, it seems that antidepressants worsening tinnitus might actually be anxiety-induced, kind of like a nocebo effect. I was never really concerned with my tinnitus worsening and it hasn't worsened.

I am in the right place with my tinnitus as I have never established the hypervigilance link with it. Therefore, I almost don't notice it most of the time and it isn't affected by things like medication.

However, I did establish the hypervigilance link with hyperacusis which I am making progress in disestablishing.

Anxiety clearly worsens hyperacusis, and after 2 years of being hypervigilant it will take a while to unlearn but I am making good progress.

 

Day 7 update on Clomipramine

I went to the doctor as I have been experiencing regular pain/burning in my heart area since starting Clomipramine. The doctor took my blood pressure, checked my heartbeat, and all looks fine. They advised me to stop taking the medication to see if the pain stops which I'm sure it will. If the pain stops, they advised that I don't take Clomipramine any longer and switch to Duloxetine instead.

I was only on 20 mg for 1 week which isn't a high enough dosage to have any real impact on hyperacusis so I cannot comment on the efficacy. If it were not for the heart pain/burn, I would continue taking Clomipramine as the overall side effects did not seem that bad.

 

I just started 25 mg of Clomipramine for mild to moderate noxacusis.

Today is day 4. No negative or positive results to report so far.

I generally have a high tolerance towards drugs. I'm guessing that I'll start seeing results, either negative or positive, once I get up to 75 mg or so, which I plan on doing within 30 days. I'm pretty active and eat healthy (only home cooked foods). So I don't foresee the side effects affecting me that much. If you're eating seed oils, sugar, processed foods, and don't exercise, you will presumably be more vulnerable toward side effects.

I believe that my noxacusis is being caused by inflammation and central nervous sensitization. Inflammation could be stemming from my middle ear/neck/poor posture/food/a lot of things.

Sound causes inflammation. Nervous system freaks out and overreacts. Endless cycle of inflammation/fear/pain, which worsens the noxacusis over time.

I recently went to the hospital over a stomach problem and they sedated me. My tinnitus and noxacusis were 80 percent better for 24 hours. Also, most people report that benzos help their tinnitus and hyperacusis.

My guess is that the side effects of Clomipramine is what helps hyperacusis. Loss of libido, drowsiness... these are indications that the CNS is being depressed. Once sound causes less pain, your ear is able to heal over time. Then you can come off the drug at some point.

I'll let you guys know if it's helping me in the coming weeks/months.

 

I agree that Central Sensitization is a strong candidate for what is happening. Certain objectively loud sounds (my dog barking, listening to my favorite songs) are more tolerable than softer sounds from my phone. Makes no sense...

 

Any updates from people taking Clomipramine for hyperacusis? I'm still giving myself a few months to try and improve naturally but if my situation stagnates or worsens I'm considering trying it out.

 

Hey, so in my case, there's not much new to report. I’m doing great hyperacusis wise. Everything sounds normally loud and I haven’t had any pain since June. Last weekend I went to a restaurant for the first time since last year (without earplugs) - my tinnitus is spiking now, however, hyperacusis seems to be unaffected. No setbacks so far.

I’m also trying to figure out if there is a possibility to organize a clinical study. I called Novartis (the company that originally developed Clomipramine) a few weeks ago. I was told that Novartis stopped producing Clomipramine in 2004, and therefore they would probably not be interested in a study.

My Clomipramine is produced by Alfasigma (an Italian company with subsidiary companies in several countries). I emailed Alfasigma Switzerland, and received the following answer:

“I will forward your idea on the treatment of hyperacusis to our parent company.

However, I would like to restrictively note that a study program would be necessary for the authorities to recognize the indication of hyperacusis. The questions that the authorities ask in such a situation cannot be answered with a single study. It would be a matter of a whole study program and a project over years. Here we can see what costs would arise and the question remains whether the authorities would finally give their approval.”​

So if anyone has any other ideas, shoot.

 

I'm on 100 mg of Clomipramine already. It's day 21. I've been on 100 mg for about 5 days.

I haven't experienced any improvement or worsening. Also I have not experienced any side effects at all, aside from maybe a little constipation. My tinnitus has been somewhat quieter at times but I can't tell if it's from the Clomipramine or not.

I think it's a bit strange that I have not seen any side effects. You'd think I'd have dry mouth or something at least.

100 mg is kind of a high dose, especially considering that people can OD and die from this drug (TCAs in general).

But like I said in my last post, I generally have a high tolerance towards drugs. I used to do a lot of pills like Xanax recreationally. But I'm not sure if that tolerance will apply to a drug like an antidepressant.

I'm guessing that maybe a high dose like 100 mg will eventually build up enough in my system to have me start experiencing some sort of effect.

In my opinion, if you have zero side effects, then the drug isn't working at all. So I'm actually looking forward to the side effects. I would literally let you amputate a finger if it meant no more noxacusis (and my noxacusis isn't even that bad, but still bad enough that I quit my job cuz it was getting worse).

I personally think that if you are relatively healthy, are eating well, and exercise a bit, to give Clomipramine a try. That may be one of the reasons I have no side effects. I only eat from home (no processed foods, added sugar or seed oils) and work out almost every day.

The only thing is... be aware that people have OD'd and died on this drug. If you read OP's post again, you'll see that many of the German success stories slowly ramped up their dosages over months. Their doctors were probably super careful, knowing that people have OD'd before. I think if you start at 25 mg, and are having side effects, then you shouldn't increase your dose until the side effects die down a bit. Like I said above, side effects are an indication the drug is working. But also an indication that your body is being upended somehow, so be careful.

OP and myself went to 100 mg pretty damn quick, which is probably not advised.

But yeah... so far I'm nowhere near OP's experience. I wish I could say that certain sounds like running water were a little less aggressive. I'll give another update once I notice at least some sort of effect.