Hyperacusis Cured/Reduced by Clomipramine

[RunningMan]

Ah okay! I'm taking it some nights. My sleep doctor said 50 mg; giving it two weeks is an adequate trial. Have you ever had a sleep study done? Most these days are at home with a little ring on your finger, or you can get a more accurate in-lab one done.

On nights when I get more deep sleep (confirmed by my Apple Watch), my tinnitus is reduced the following morning and day. Quviviq seems to help with that. But so does Gabapentin/Mirtazapine.

My doctor didn't know anything about Quviviq. I had done my own research on it and told him about it. Some people have better results after a few weeks of taking it every day, and it seems almost everyone starts at or bumps up to 50 mg, including me, very soon. And then some people say it stops working for them after days or a couple of weeks, or that it doesn't work at all, or they complain about sleep paralysis, nausea, headache, or drop in mood.

So, I'll just see how it goes once I'm on 50 mg. I'll only have about nine nights on 50 mg before I need to order another month because of the delay with the physician prescribing and the additional time for the pharmacy to order the drug that they don't stock. As long as I don't have a bad reaction, that additional refill will give me over a month on 50 mg to see if it's going to work for me.

I have a Fitbit, that I bought because it was supposedly more accurate for sleep tracking and oxygen variation. My oxygen variability looks good, but I don't trust any of the sleep stage info, even if it says I'm asleep. Most mornings, when I'm lying wide awake in bed, it will say I'm in light or REM sleep much of that time because I'm lying still. I haven't found any correlation between my sleep and tinnitus. Tinnitus seems to have its own variable cycle.

My doctor wouldn't consider Gabapentin. He probably wouldn't prescribe Mirtazapine, either, but I'm trying to avoid it due to the likely weight gain and other potential lasting serious side effects and withdrawal effects.

 

[A84]

I only had this whistle. My tinnitus used to get a lot louder with everyday sounds, but luckily, this is rarely the case now. I'd say it varies, but it's much more stable.

I don't have meaningful hearing loss up to 8 kHz; there are a few dips of 10 dB, and that's all.

Clomipramine gave me a few episodes of sweet teeth. But I kind of managed. I don't think I gained any significant amount of weight as I was also always working out 3-4x/week. I did not experience heartburn, but I did experience some weird constipation that slowly improved over many months.

If I remember well, I started sometime around July last year? Maybe June? I started with 25 mg, and my maximum dose was 100 mg for two months, then 75 mg extended release until I started to wean off.

My psychiatrist was reluctant to give me Clomipramine; he only did it after I showed him the anecdotes. My psychologist was the angel I mentioned before. Her name is Elke Müller-Soukoup; she has a website you can easily find on Google. She treats about 10-20 cases of hyperacusis per year, on top of being known for therapy for tinnitus in my city.

I'm very sorry to hear about your tinnitus getting worse after 20 years. It's a very difficult condition.

I hope your tinnitus stabilizes so you can try to push for a normal life again. When my tinnitus started, not even 80 dB sounds would mask it. Yet, I habituated with the help of antidepressants somehow.

The key is to turn off your emotional response to it. When I was doing my psychological therapy for hyperacusis, I'd often do exercises to stimulate my other senses. For instance, I had a few exercises where I'd have to close my eyes and touch an unknown object she would place in my hands.

I had about 10 minutes to figure it out. I never got it right, but at the end of the exercise, I was asked if I thought about tinnitus during that moment. The funny thing is that I managed to ignore it completely while touching and feeling the object.

That's when the whole "I can habituate" thing kicked in a bit. I'd normally not do such things, but getting that help (psychiatrist and psychologist) took me out of that hole. It doesn't work for everyone, but it worked for me.

Ah, also, getting out of Tinnitus Talk was somewhat harder than habituation. I lurked here every single day, and I fed my brain and body with a lot of negative emotional responses, and you only realize what kind of damage that does later on.

I think one can put tinnitus in the same mental space as an obsession in an OCD-prone brain. The more you stimulate that obsession, the worse it gets. And to me, coming here to read all the stuff was precisely that.

Hey, @wiektor, thanks for the update! I'm curious: how long did you have hyperacusis before starting on Clomipramine? And did you have both loudness and pain hyperacusis (noxacusis)? Lastly, how did/do you know when it's the right time to start weaning off it? It sounds like you're planning to wean off completely sometime this month (May).

Heya guys!

Just an update about Clomipramine. I had successfully tapered it and eventually stopped taking it. But I had a major setback in late January, worsened by either COVID-19 or the flu. Burning pain in both ears, to the point I remembered what I read somewhere on the Internet about having melting lava poured into the ears... yeah, it did feel like that.

I was reluctant to start Clomipramine again, as stopping it was hard (headaches, fatigue, brain zaps, mood changes), but the burning pain was too much, and I decided to give it a (new) try.

I started at 10 mg a day, then increased to 20 mg, 30 mg, 40 mg. After a month, I reached 100 mg a day, and I've stayed there since. The pain is gone by 80-90% and during bad days, it's mostly a tingling; definitely uncomfortable but not that painful.

The side effects are mostly dry mouth, heavy sweating, constipation, urinary retention, and being often sleepy. On the other hand, there was no tinnitus spike, which is quite appreciable.

As far as I'm concerned, Clomipramine still proves to be the most efficient medication for neuropathic pain (burning type), and I wish ENTs were more aware of it. I did talk about the pain when I first went to one right after the trauma, and he said (and did) nothing to help me with the pain.

Hey, @Morgoth51, forgive me if you've already shared your full story somewhere at some point, but when did you taper off completely the first time around? Or rather how much time elapsed between stopping Clomipramine the first time and this setback/starting back on it in January? And was your loudness/pain hyperacusis worse this time around than it ever was at its worst when you originally first developed hyperacusis?

 

[wiektor]

Hey, @wiektor, thanks for the update! I'm curious: how long did you have hyperacusis before starting on Clomipramine? And did you have both loudness and pain hyperacusis (noxacusis)? Lastly, how did/do you know when it's the right time to start weaning off it? It sounds like you're planning to wean off completely sometime this month (May).

I had hyperacusis for about three months before deciding to try Clomipramine. I did not experience any pain with sounds, so it was loudness hyperacusis. It was catastrophic, and I was at my wits' end.

I wanted to wean off because I was completely healed from hyperacusis and depression, so my doctor thought it was wise to start weaning off very slowly. I could live with Clomipramine for the rest of my life; the side effects were very minimal as my body got used to it.

But they were still there, and there was an issue that probably not everyone has: I was way too happy (emotionally speaking) with it. I started with some hypomanic tendencies to "catch up with lost time" after living with this demonic disease. I was living life too intensely and not being wise about a few decisions. Don't get me wrong, that sounds good. It also made me extremely productive at work, but I was too intense on going out often, spending too much money (stopped saving), not sleeping more than 6 hours, etc. Also, there are a few other things I don't feel comfortable sharing in such a public forum, hehe.

The doctor said hypomanic episodes happen with life-changing events (diseases, death of family, etc) and that maybe Clomipramine made this whole thing a tad more intense. I do not have bipolar disorder, nor does anyone in my family, so that possible link to a more severe type of hypomania was discarded early on.

I successfully stopped taking Clomipramine about two weeks ago. The third day after not taking it anymore (I was taking about 7 mg a day in that last phase), I got some brain/body zaps/spasms that were funny and weird at the same time. I also had a few minor/moderate mood swings for five days.

Today, I am 100% back to normal, and I don't have zaps or mood swings anymore! I also feel like I'm myself again! I can cry with silly stuff again (happy or sad tears, haha — antidepressants always make it easier not to feel sad) and enjoy my time in the present without any anxiety about the future of my ears.

I swear my life is 100% back to normal, and I am so grateful for that. I still protect myself with the best foam earplugs at parties/nightclubs/concerts, and I guess that's the only permanent change I had to make. When queuing for those events, I wear them and don't take them out for a second until the party's over. I have also been using headphones for 5+ months, and that has never worsened me nor made hyperacusis return (AirPods Max, capped at 75 dB).

I barely think about my ears anymore... Tinnitus has also become a static/white noise most of the time (especially waking up) rather than metallic/high frequency, and I'm super happy about it. So, FOR ME, Clomipramine did not affect my healing or my ears.

It may be worth noting, but I still take Taurine (1 g), Magnesium (400 mg), Ginkgo Biloba (120 mg equivalent), and Vitamin B1 (100 mg) daily. I've been taking these for almost a year now. I don't think that ever helped much. But maybe it did. Vitamin B1 helps with my digestion (I had gastroparesis in the past), so I was always a fan of that.

I hope that helps!

 

[RunningMan]

I was thinking of Cymbalta since it's used for central sensitization disorders, and hyperacusis supposedly falls into that category. I

Did you ever try Cymbalta (SNRI antidepressant)? I had a gastroenterologist say I might need a TCA (tricyclic antidepressant - 20 mg Nortriptyline, I think, rather than Clomipramine) because of stomach pain with no issues found via endoscopy and random biopsies. I've taken Nortriptyline before at 50 mg, which didn't do anything for me anxiety-wise, and had side effects even at 25 mg, like dry mouth, elevated heart rate, and horrible lasting heartburn-like pain after taking the medication too close to eating. I think Cymbalta might be a better option to address the pain along with a chance of helping my anxiety while avoiding some of those side effects from the TCA - although I never know what's an option since the doctor has to prescribe it. Ironically, my PCP doctor was anti-TCA, so something has to give. But again, the PCP was more wanting to prescribe Effexor when it came to SNRIs. The gastroenterologist is talking about TCA. He's having me trial a PPI first.

Ah okay! I'm taking it some nights. My sleep doctor said 50 mg; giving it two weeks is an adequate trial. Have you ever had a sleep study done? Most these days are at home with a little ring on your finger, or you can get a more accurate in-lab one done.

On nights when I get more deep sleep (confirmed by my Apple Watch), my tinnitus is reduced the following morning and day. Quviviq seems to help with that. But so does Gabapentin/Mirtazapine.

I might ask about the sleep study. I think it's a long shot of amounting to anything, though. My doctor brushed it off when I brought it up before But I've been on 50 mg Quviviq for over three weeks straight now after first taking 25 mg for ten days, and I'm still not getting good sleep on it. There is no improvement to speak of. I was awake within 2 hours last night and often struggle to get back to sleep after 4 hours. I'm not sure how much longer to stick with it before pulling the plug on the medication.

 

[BuzzyBee]

Did you ever try Cymbalta (SNRI antidepressant)? I had a gastroenterologist say I might need a TCA (tricyclic antidepressant - 20 mg Nortriptyline, I think, rather than Clomipramine) because of stomach pain with no issues found via endoscopy and random biopsies. I've taken Nortriptyline before at 50 mg, which didn't do anything for me anxiety-wise, and had side effects even at 25 mg, like dry mouth, elevated heart rate, and horrible lasting heartburn-like pain after taking the medication too close to eating. I think Cymbalta might be a better option to address the pain along with a chance of helping my anxiety while avoiding some of those side effects from the TCA -

I haven't personally tried Cymbalta, but I met someone with severe tinnitus who uses it and has not experienced an increase in their tinnitus. It did help their mood. If I were to try a medication, it would probably be that one.

 

[Sonic17]

Benzos helped a little; antidepressants didn't help at all and made things worse.

Which benzos? And did you use them mainly for sleep?

 

[RunningMan]

Which benzos? And did you use them mainly for sleep?

The benzo I have is Lorazepam (Ativan). I take it only occasionally, primarily for anxiety. However, I sometimes take it around 5 AM to ward off morning anxiety and may sleep a little, but sleeping is not a primary use of the benzo for me. Zolpidem works better for me when it comes to sleep. I'm still taking Quviviq for sleep and am not convinced it's working that well, but I haven't tried skipping it to see if I sleep worse without it. I'm still waking up too early and needing Zolpidem.

 

[Sonic17]

The benzo I have is Lorazepam (Ativan). I take it only occasionally, primarily for anxiety. However, I sometimes take it around 5 AM to ward off morning anxiety and may sleep a little, but sleeping is not a primary use of the benzo for me. Zolpidem works better for me when it comes to sleep. I'm still taking Quviviq for sleep and am not convinced it's working that well, but I haven't tried skipping it to see if I sleep worse without it. I'm still waking up too early and needing Zolpidem.

Yes, I take a benzo (1 mg of Ativan) to sleep at night. I wish I could find something else that is not a benzo to help me sleep. The thought of sleep paralysis scares me, but maybe I should try Quviviq.

 

[RunningMan]

Yes, I take a benzo (1 mg of Ativan) to sleep at night. I wish I could find something else that is not a benzo to help me sleep. The thought of sleep paralysis scares me, but maybe I should try Quviviq.

This morning was one of those times. I took Ativan at about 5 AM along with a Zolpidem, a bit sublingual, and slept some more. I've been on Quviviq for over nine weeks at a maximum dose.

I've had two instances where I might have experienced sleep paralysis momentarily. Still, I might have been dreaming because I remember seeing or sensing other beings near my bed or in bed, and then I was awake very soon after. I would have thought I was dreaming of paralysis, but I don't recall having a dream about being paralyzed in bed prior to taking Quviviq. So maybe that was just as I was waking and couldn't yet move, very briefly. Anyway, it was just seconds and pretty much a nothing burger.

I still don't sleep long enough, so I'm considering asking my doctor about switching to Dayvigo, which is in the same class of sleep meds (DORA). It might last longer than Quviviq because it has a longer half-life, although daytime grogginess could be a factor.

 

[Sonic17]

This morning was one of those times. I took Ativan at about 5 AM along with a Zolpidem, a bit sublingual, and slept some more. I've been on Quviviq for over nine weeks at a maximum dose.

I've had two instances where I might have experienced sleep paralysis momentarily. Still, I might have been dreaming because I remember seeing or sensing other beings near my bed or in bed, and then I was awake very soon after. I would have thought I was dreaming of paralysis, but I don't recall having a dream about being paralyzed in bed prior to taking Quviviq. So maybe that was just as I was waking and couldn't yet move, very briefly. Anyway, it was just seconds and pretty much a nothing burger.

I still don't sleep long enough, so I'm considering asking my doctor about switching to Dayvigo, which is in the same class of sleep meds (DORA). It might last longer than Quviviq because it has a longer half-life, although daytime grogginess could be a factor.

Yup, sleep paralysis would freak me out. It almost sounds like hallucinating.

 

[haha ear go eeee]

@Trafalgar D, this is a really informative post, well done. I was wondering how I could find those two German forums on hyperacusis, the links aren't loading for me. I'm also not sure if I'm at the right place to access the Tinnitus-Liga Forums.

Thank you.

 

[Trafalgar D]

@Trafalgar D, this is a really informative post, well done. I was wondering how I could find those two German forums on hyperacusis, the links aren't loading for me. I'm also not sure if I'm at the right place to access the Tinnitus-Liga Forums.

Thank you.

Hey, this link should work:

https://forum.tinnitus-liga.de/cms/index.php

You need to create an account first. They also announced that they will be shutting down the forum on 12/31/2024.

The second link is:

https://forum.mytinnitus.de/de/viewtopic.php?id=949

 

[KDMG]

I'm currently at 100 mg of Clomipramine, with a target of 150 mg. Here are some things I've noticed:

• Sustained release is significantly more tolerable than regular clomipramine. The difference was astounding for me. Regular Clomipramine gives me heartburn and some other issues, but none of that is present with the sustained release. Since the sustained release is only available in 75 mg, I had to use the regular 10 mg/25 mg to work up gradually. I have very few complaints when I use only the sustained release version. I jumped from 50 mg regular to 75 mg sustained, and it was much more tolerable, even though it's a 50% higher dose.
  
  
• Drinking half a liter of water with regular clomipramine seems to alleviate some of the negative effects. However, with sustained release, this is not necessary.
  
  
• The first week or two on clomipramine is pretty rough. Honestly, regular Clomipramine is difficult to tolerate overall. I'd recommend everyone try the sustained release before deciding whether they can handle it.
  
  
• Clomipramine affects your sleep when you first start taking it. I experienced a mix of insomnia and lighter sleep in general. Fortunately, this resolves over time.

 

[yeezysqueezy]

I'm currently at 100 mg of Clomipramine, with a target of 150 mg. Here are some things I've noticed:

• Sustained release is significantly more tolerable than regular clomipramine. The difference was astounding for me. Regular Clomipramine gives me heartburn and some other issues, but none of that is present with the sustained release. Since the sustained release is only available in 75 mg, I had to use the regular 10 mg/25 mg to work up gradually. I have very few complaints when I use only the sustained release version. I jumped from 50 mg regular to 75 mg sustained, and it was much more tolerable, even though it's a 50% higher dose.
  
  
• Drinking half a liter of water with regular clomipramine seems to alleviate some of the negative effects. However, with sustained release, this is not necessary.
  
  
• The first week or two on clomipramine is pretty rough. Honestly, regular Clomipramine is difficult to tolerate overall. I'd recommend everyone try the sustained release before deciding whether they can handle it.
  
  
• Clomipramine affects your sleep when you first start taking it. I experienced a mix of insomnia and lighter sleep in general. Fortunately, this resolves over time.

This is super helpful to everyone. Thanks for posting. Great advice.