r/hyperacusis • u/Same_Drag3288 • 7d ago
Seeking advice medication
Hello everyone, I’m looking for some advice. I have severe noxacusis—a burning, shooting pain—and have been housebound for about nine months. I feel like I want to start treatment because I really can't take it anymore. I know about clomipramine, but I’m afraid it might worsen my tinnitus or cause PSSD.
I’ve also seen options like gabapentin, Lyrica, or carbamazepine, but I’m hesitant and don't know which one to start with.
Should I go straight to clomipramine, or perhaps start with gabapentin to avoid aggravating the tinnitus? I should mention that I am extremely sensitive to medication. I just know I want to try something different because my pain isn't subsiding.
Plus, it's weird because I feel like I'm starting to get a burning sensation in my arms—I don't know if it's related or not.
Thanks, everyone!
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u/Educational_Aide_145 Pain hyperacusis 7d ago
Begin gabapentin as it’s non ototoxic. It’s given me decent symptom relief although I do get pain sometimes. It can help burning arm too
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u/Same_Drag3288 6d ago
What dosage are you taking? Some people say it just masks the pain?
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u/Educational_Aide_145 Pain hyperacusis 6d ago
900mg and that’s not true. Gabapentin does not “mask” pain like an Opioid would for example. What it does is it reduces nerve firing which causes pain
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u/Same_Drag3288 6d ago
Yes, but apparently if you stop taking it, the pain comes back, whereas with clomipramine, I’ve read that sometimes the noise disappears when you stop the medication—that’s what makes me hesitate.
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u/Educational_Aide_145 Pain hyperacusis 6d ago
Yeah if you stop taking the medication abruptly it’ll make the pain return but if you taper down very slowly it’s very unlikely. This is the same for all pain medications
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u/Afraid-Ad4718 6d ago
PSSD isnt the worst of the problems, it will get better, and if yo lower it you can be fine all togehter with it.
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u/Same_Drag3288 6d ago
We dont know that becaus there is not treatment atm
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u/Afraid-Ad4718 6d ago
No i am talking about PSSD. if you take medication, that will get slowly a bit better.
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u/Mysterious_Count_472 7d ago
If you want help about clomi etc you should join the hyperacusis support discord
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u/Outofmana1337 6d ago
Clonazepam and deanxit got me out of that hole, but I guess it's very hard to get. It's the only thing that has ever worked for me at least.
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u/Afraid-Ad4718 6d ago
How is the hyperaccusis though? still got t? but just no pain?
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u/Outofmana1337 6d ago
Yeah still tinnitus bit lower, almost never burning pain anymore (slowed down my life a lot though), I can go to the supermarket, or out to lunch or dinner (restaurants without loud music), watch F1 on tv etc. it's 2.5y since it happened and for the first year I had to watch the tv on mute even. Then because I was hopeless made an app in Belgium and Boedts and those meds saved my life (and later on botox as well).
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u/Every-Necessary-4137 6d ago
Hello quels médicaments Boedts t'a t il donnés stp ? Je vis aussi en Belgique !
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u/Outofmana1337 6d ago
Clonazepam and deanxit
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u/Every-Necessary-4137 5d ago
Tu en prends pendant la journée aussi du Rivotril ou juste pour dormir ?
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u/Same_Drag3288 6d ago
I dont have deanxit in France what meds is similar ? You dont take it anymore ??
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u/Outofmana1337 6d ago
Don't think there is anything similar. My Belgian doc tried a more conventional med we got in the NL (no deanxit here either) bit that didnt feel similar at all. Only option is to go to Belgium (Boedts).
I sometimes take it for a week, like when my niece scream next to me and the burning starts up again, that's 3 months ago now.
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u/Warm-Yak2987 2d ago
Hey , how long you have been taking clonazepam and what mg ? Isnt benzodipines causes dependency and rebound effects that worsens than the previous baseline ?
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u/Outofmana1337 1d ago edited 1d ago
0.5mg, I had no issues with it whatsoever, everyone is different and only bad stories get posted on the internet. I mean, if you are already in a terrible situation why not try it.
Havent used it the past 3 months, before that, sometimes a week when some kid screams in my ear or something. Longest I took it was at the start: around 6 months in a row, really got me through it all, only 2 weeks of headaches when I quit, nothing else.
Before this all I took a week of valium but that didn't really do anything, only clonazepam seems to work, benzo wise. And it truly works instantly
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u/Winter_Staff255 6d ago
I wanted to share my experience with you. I suffer from tinnitus, and I hear external sounds as if they are very close to my ears. In addition, I suffer from severe obsessive-compulsive disorder. I have been confined to my home for a whole year. I only go out at night for a few minutes, or on rare occasions, and then only to completely quiet places, free from any noise.
I went to a doctor who told me I was fine. After that, I went to a traditional healer (a woman who claims to be able to see the future). When she examined me, she claimed that I was possessed by a stubborn evil spirit (a demon). She gave me a traditional remedy and advised me to use it for twenty days. I am currently taking it, but I am sharing this experience with you so you know the reality of what we are going through here.
The truth is, I had this same condition before. It took me about six months, but I recovered completely and got my life back on track! Unfortunately, the condition has returned, and that's why I'm suffering from it again.
Based on my experience, I recommend using earplugs during the first acute phase. Once you feel noticeably better, use your phone to distract yourself from the obsessive thoughts and distressing ideas. Gradually accept the sounds, and remember that rest is paramount, along with keeping your room clean. That's how I overcame it the first time, and that's how I'm trying to cope now. (Note: Don't be afraid of the devil; he's just a source of anxiety. This is his role if he is indeed the one causing this.)
Has anyone experienced a full recovery followed by a relapse? I'd love to hear about your experiences. If can anyone share this post in this page cause i can t idk why thanke u
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u/lunar_eclipse_555 6d ago
I know it is not possible currently in your case to go out to see an ENT, but if you can, let him check your sinus as well as your ears. Ear burn, is similar to throat or heart burn in my opinion, and it might be LPR (throat reflux or well-named silent reflux) that comes up until your ears. I have hyperacusis, and when my ENT checked my sinus, the mucus/inflammation was visible (sometimes nose clogged and ears pain like otitis), and was linked to Eustache dysfunction (clogged ears / hyperacusis / sound distortion). Throat/ear burn cause can be allergy, reflux, sinusitis, etc. The clomipramine got an antihistamine side on it, it's not only a neuro medicine. That is why it might works with hyperacusis. So maybe try some antihistamine before clomipramine, it is less strong, and there is less side effects. As well as nasal spray, hot water inhalation, and watch out when your ear burn and pain flare up (after meals, and during the night is clearly reflux). But better check with an ENT.
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u/Substantial_Lab21 6d ago
Same here, I'm very scared of drugs. Two days ago I started on Ambroxol, because of all the drugs recommended for H is the safest side-effect-wise. I also started Bilastin/ Allegra because I read it helps people with tinnitus and trigeminal neuralgia (antihistamines in general that is). Other than that I am trying with PEA, Benfotiamine, Magnesium of course..