Hyperacusis Cured/Reduced by Clomipramine

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.

 

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).

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?

 

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!

 

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.

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.

 

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.

 

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.

 

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.

 

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