I started Rapamycin 2 weeks ago, I am taking it for CFS. I started slow with 0.5mg once a week and all was ok, yesterday I upped the dose to 1mg and then about 8 hours later I started with hearing problems, I have tinnitus in one ear already, but it started on my other ear and I can’t hear as well, it’s like it’s all muffled and blocked. I am quite worried as I hope it isn’t permanent! So just asking if anyone has had anything like this. I don’t have a cold or anything by the way.
I don’t know now whether to stop taking the Rapamycin or just take less again, I am a small person and also very sensitive to drugs.
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Best evidence is probably this paper, which is a survey of 333 users:
1777ad05-24e5-5913-0f89-796c2d89198a.pdf (667.1 KB)
In Table 5, “loss of hearing” is listed, with 4.1% of non-users and 2.4% of Rapamycin users reporting it.
Also, in Table 4, “my hearing got better” was supported by 6% of users, disagreed by 13.5% and 80.5% said neither.
So I don’t see any strong signal for hearing loss. Also, there’s a paper (
fncel-15-658972.pdf (904.7 KB) ) showing it reverses hearing loss in mice.
That said, some people do respond to drugs differently. I know Cialis gives some people tinnitus or hearing disturbances, so I suppose it’s possible.
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Thankyou for that information. I saw that hearing loss and ringing in the ears was a side effect on some sites online,but didn’t say whether it was temporary or permanent.
Today it is feeling much better, the ringing has almost gone and my hearing seems less blocked, so I am quite confident it was a side effect for the first day or two and then goes, but I am unsure whether to keep taking it, as don’t want it to damage my hearing over time. Might go back to the lower dose or take it every 2 weeks and see how that goes.
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2 mg of rapamune once a week gave me mild vertigo. I reduced the dose to once a week and I am fine now. Rapamycin dosage is very personal as far as I understand.
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While it may not won’t work for you, I’ll share that I recently started to get mild short random occurrences of tinnitus.
My PT has a long over my head explanation, but the reader’s digest version is if there was no damage (ie loud noise), it’s basically your brain (simplified answer).
He said when it happens, I should dart my eyes back and forth (looking left then right) and it can reset my ‘brain’
Oddly it works most of the time for me. Easy to try … fingers crossed.
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Since it was temporary, I guess you can try again with the next dose and see if it’s repeatable? That feeling of being muffled could be literally anything - a slight immune response to an infection that you didn’t know you had, a mild allergy, a response to the weather or air pressure, maybe you slept funny, maybe you got some water in the ear from showering etc etc
The links between Cialis, Viagra, and tinnitus are mostly anecdotal. I definitely noticed an increase in the volume of my tinnitus. I have tested this. If I stop taking Cialis for a few days, it goes away and returns with the next dose I take. (5mg daily).
More commonly, they are associated with hearing loss. I haven’t noticed any hearing loss, but I have no baseline with which to measure it accurately.
It’s very amusing that ChatGPT exactly cite this thread when asked about rapamycin and tinnitus! 
So I guess now it will read that as a reinforcement of what it has just output.
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Makes you wonder if the end result of internet search AI will be a circular mess of misinformation?
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I guess in a few years we will see various modes of misinformation. Some might concentrate on fixed points while some others could oscillate between several fixed points or even result in chaotic attractors.
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it reminds me a bit or when wikipedia first came about. It was notorious for misinformation but now it often is a pretty reliable source.
Wow that’s pretty crazy that AI has done that!