MemberHello everyone.
Here's my story:
I believe I have had pulsatile tinnitus (heartbeat synchronous) in my left ear for quite some time, but it's never been loud or intrusive enough to have really seriously bothered me for any length of time. Things started to change about a month ago.
I've also been struggling with incapacitatingly severe abdominal nerve pain for several years now. Most typical pain killing medications are not effective on nerve pain; Oxycodone helps me a bit and I've never had any side effects from it, so that's what I use and I try to take minimal amounts but it only helps so much.
A doctor recently recommended trying Nortriptyline since it was supposed to be effective for nerve pain. I took 20 mg per day for 4 days (one month ago). The pain seemed to decrease about 20 to 30% but the side effects were horrible - painful urination and a complete inability to sleep at all - I didn't sleep a wink for 5 days in a row, so I gave up on it.
There was at least one other side effect that I didn't notice at first - I started hearing a sequence of repeating tones in my left ear - a set of anywhere from 2 to 6 tones that would occasionally change to a different set for whatever reason. At first I thought someone was playing music in another room, but then I realized it was being triggered by the noisy fan of a heater I had in my room. Sometimes the tones sound like a violin and other times like a French police car siren, as well as other tones too. At no time is it a familiar melody that I recognize from before.
Fast forward a few weeks. Now, when watching TV for 10 minutes or more, the tinnitus in my left ear increases dramatically and it suddenly starts to also appear at a loud level in my right ear. After one evening of watching a few TV shows, the increased loudness made it impossible to get to sleep for more than half the night even after taking Benadryl.
In the meantime, the repeating tones in my left ear continue. Over the weeks, they have been repeating and I recognize them from the prior week. They seem to be independent of the tinnitus. Sometimes, I can get them to go away for a few minutes or change to another sequence by listening to a short stream of music. I've noted that listening to white noise has no effect on it. Thus, it seems to have something to do with whether my mind is active in certain ways, especially verbally, since it mainly starts up as soon as things are quiet and I'm alone and not when I'm speaking to someone or watching TV or listening to music.
Lately, when I wake up in the mornings, my tinnitus is reasonably quiet and mostly stays quiet until I am exposed to relatively normal levels of sound, such as a TV or someone speaking to me and then it ramps up. It then gets to be a bit painful to continue at what was previously a normal volume for me. On the other hand, the repeating tones can start at any time and don't appear to be triggered by anything that I have noticed so far.
A data point - when my tinnitus got loud, I tried that trick of pressing down hard with my palms on the area behind my ears and my hissing tinnitus noise drops quite a bit but returns immediately when I stop pressing down (no effect on the repeating tones). Not sure of the relevance of that?
Also, it's always been the case that if I tilt my head backwards with my left ear towards my left shoulder, the loudness of my tinnitus increases in my left ear. It also increases to a lesser extent if I move my lower jaw forward.
Due to my nerve pain being quite incapacitating and with COVID-19 still running rampant, I won't be able to get in to see an audiologist for quite a while.
I'm now getting concerned that this might be permanent, since it's been 4 weeks since I stopped the Nortriptyline and I'm not seeing any improvement and my tinnitus is worse than immediately after taking the drug.
Right now I try to keep my surroundings as quiet as possible to prolong my time with minimal tinnitus, as I imagine most forum members can appreciate. Otherwise, I am faced with several hours of tinnitus and repeating tones after only a short exposure to normal sound levels. However, this will not be sustainable in the long term as I will need to communicate with others. Is this sound isolation a good idea for now, in case I am in a healing mode?
Based on my newfound sensitivity to a normal volume level of sound, do I now have reactive tinnitus or hyperacusis? Can it really happen that quickly with just a few days on a medication?
What about the repeating tones that start as soon as it is quiet (lately they have been starting just 10 seconds after I stop listening to music)? Are they related to the tinnitus? Is it strange that I only hear them in my left ear? Has anyone else experienced this? Any way to rid myself of those tones in my brain since they're driving me a little crazy?
What has this drug done to me??
Thanks to anyone who might have some insight or be able to help.
Here's my story:
I believe I have had pulsatile tinnitus (heartbeat synchronous) in my left ear for quite some time, but it's never been loud or intrusive enough to have really seriously bothered me for any length of time. Things started to change about a month ago.
I've also been struggling with incapacitatingly severe abdominal nerve pain for several years now. Most typical pain killing medications are not effective on nerve pain; Oxycodone helps me a bit and I've never had any side effects from it, so that's what I use and I try to take minimal amounts but it only helps so much.
A doctor recently recommended trying Nortriptyline since it was supposed to be effective for nerve pain. I took 20 mg per day for 4 days (one month ago). The pain seemed to decrease about 20 to 30% but the side effects were horrible - painful urination and a complete inability to sleep at all - I didn't sleep a wink for 5 days in a row, so I gave up on it.
There was at least one other side effect that I didn't notice at first - I started hearing a sequence of repeating tones in my left ear - a set of anywhere from 2 to 6 tones that would occasionally change to a different set for whatever reason. At first I thought someone was playing music in another room, but then I realized it was being triggered by the noisy fan of a heater I had in my room. Sometimes the tones sound like a violin and other times like a French police car siren, as well as other tones too. At no time is it a familiar melody that I recognize from before.
Fast forward a few weeks. Now, when watching TV for 10 minutes or more, the tinnitus in my left ear increases dramatically and it suddenly starts to also appear at a loud level in my right ear. After one evening of watching a few TV shows, the increased loudness made it impossible to get to sleep for more than half the night even after taking Benadryl.
In the meantime, the repeating tones in my left ear continue. Over the weeks, they have been repeating and I recognize them from the prior week. They seem to be independent of the tinnitus. Sometimes, I can get them to go away for a few minutes or change to another sequence by listening to a short stream of music. I've noted that listening to white noise has no effect on it. Thus, it seems to have something to do with whether my mind is active in certain ways, especially verbally, since it mainly starts up as soon as things are quiet and I'm alone and not when I'm speaking to someone or watching TV or listening to music.
Lately, when I wake up in the mornings, my tinnitus is reasonably quiet and mostly stays quiet until I am exposed to relatively normal levels of sound, such as a TV or someone speaking to me and then it ramps up. It then gets to be a bit painful to continue at what was previously a normal volume for me. On the other hand, the repeating tones can start at any time and don't appear to be triggered by anything that I have noticed so far.
A data point - when my tinnitus got loud, I tried that trick of pressing down hard with my palms on the area behind my ears and my hissing tinnitus noise drops quite a bit but returns immediately when I stop pressing down (no effect on the repeating tones). Not sure of the relevance of that?
Also, it's always been the case that if I tilt my head backwards with my left ear towards my left shoulder, the loudness of my tinnitus increases in my left ear. It also increases to a lesser extent if I move my lower jaw forward.
Due to my nerve pain being quite incapacitating and with COVID-19 still running rampant, I won't be able to get in to see an audiologist for quite a while.
I'm now getting concerned that this might be permanent, since it's been 4 weeks since I stopped the Nortriptyline and I'm not seeing any improvement and my tinnitus is worse than immediately after taking the drug.
Right now I try to keep my surroundings as quiet as possible to prolong my time with minimal tinnitus, as I imagine most forum members can appreciate. Otherwise, I am faced with several hours of tinnitus and repeating tones after only a short exposure to normal sound levels. However, this will not be sustainable in the long term as I will need to communicate with others. Is this sound isolation a good idea for now, in case I am in a healing mode?
Based on my newfound sensitivity to a normal volume level of sound, do I now have reactive tinnitus or hyperacusis? Can it really happen that quickly with just a few days on a medication?
What about the repeating tones that start as soon as it is quiet (lately they have been starting just 10 seconds after I stop listening to music)? Are they related to the tinnitus? Is it strange that I only hear them in my left ear? Has anyone else experienced this? Any way to rid myself of those tones in my brain since they're driving me a little crazy?
What has this drug done to me??
Thanks to anyone who might have some insight or be able to help.
