Hi Everyone,
TL;DR: Skip preface
Note: I want to preface everything here and disclose that I do have clinically-diagnosed anxiety disorders and a depression disorder. I've been a pessimist my entire life, but I want any readers to be aware that this could be playing into the tone of my writing, and that just because this happened to me, does not mean it will happen to you.
I don't usually post or frequent this forum anymore as I don't have much hope for my situation, but I wanted to at least get my update out since I see others have been doing the same. If you are looking for a success story, this unfortunately, is not one, but for those brave souls who can stomach the read, I wanted to update everyone as I just passed the 23 month mark 2 days ago.
Preface (skip this for quicker reading):
On June 18th, 2019, I went through my usual hygiene routine: brush teeth, wash face, all the fun stuff. I had been prescribed Wellbutrin SR 100mg and the first two days of this medication were eventful...in a good way. I had a computer science exam coming up the next day and I was still going through acute withdrawal from chronic SSRI use which I had chosen to discontinue due to severe side effects and diminishing efficacy (in essence, SSRIs did not work anymore for me like they once had), so I had been severely depressed. When I took the Wellbutrin SR pill on the first morning (June 16th), my depressive symptoms went away almost instantly and the newly-found motivation was so profound, I managed to cover the content for the exam in about 6 hours (I don't cram, but I was lagging behind and the day after, I had other plans that conflicted, so this needed to be a big study day). However, things changed on the third day. I took the pill and unfortunately, that is when my adventure with tinnitus began. To describe it, I was experiencing bilateral pulsatile tinnitus that was worse in the evenings.
I'm a person who was extremely cautious growing up. In 2008, I went to a middle school graduation dance which was the last large-scale public event I ever went to without earplugs because this was around the time when I learned that the temporary ringing and muffling was due to alleged cilia cell damage and not just "ear fatigue" as everyone would allude to. At the time and up to the time I went to university, I was an aspiring audiophile and loved headphones, so I knew I had to be careful. Sometimes, I'd listen to music on the bus and would barely hear anything, but I knew a few minutes of music on a loud bus sporting a Cummins engine was not worth the potential damage down the line.
Anyways, I digress. So on June 25th, 2019, I contact my psychiatrist and say that I can't take it anymore. I must come in and change things out. She agreed and we had a conversation. Ultimately, I was put on Wellbutrin XL 150mg. You might be asking, "Are you nuts? Why would you take that AFTER you acquired tinnitus?" at this point. I don't blame you, but there's some nuance here: I had been prescribed this before alongside SSRIs and had zero side effects. No tinnitus, no terrible anxiety, no anything (except for the time when I was on Effexor XR when I went through what I perceive was a hypomanic episode, but I don't really know as there was no clinical diagnosis, but I lost a huge chunk of money buying a car and selling it a week later because it "wasn't good enough" [I have no history of risky and stupid decisions like this in the past]). In short, my suicidal ideations, lingering sexual side effects, and emotional blunting were bad coming off of SSRIs in May 2019 and Wellbutrin XL 150mg was so effective the first time, I named it "The God Pill". I was doing very well on just the Wellbutrin back in November 2018 before I came off antidepressants entirely the first time. This second time, unfortunately, I had made a fatal mistake and on June 26th, 2019, my life was altered forever. The ringing started in my right ear.
Over the next few days, the ringing in my left ear went away 100% after I stopped the Wellbutrin SR 100mg. Three days in, I email the psychiatrist begging to get off of this ASAP, but she told me to stay on it for a month. I usually followed my instincts, but this time, I followed the doctor's advice to be a "good patient" since I had a reputation for coming off things on my own. On July 19th, 2019, I took my last dose of Wellbutrin and consequently, all antidepressants, but the right ear problem is something I battle with to this day.
I'm putting the rest of this in bullet form to make it a quick(er) read, but if anyone wants more information, I'd be more than happy to elaborate
Qualities of Tinnitus:
I have never been able to relate to anyone else: Wellbutrin-induced, medication-induced, or any other folks afflicted with tinnitus.
- Purely unilateral. I have zero tinnitus in my left ear
- Not constant, almost pseudo-pulsatile. I have no category because I go through several tones and "pings" and they fluctuate every few seconds. It is a whooshing sound that is triggered by posture and can range from near silence to a good 70-80 dB. Pings reach 14 kHz but the rest of the sounds are maybe in the 10-12 kHz range (I pitch-matched the ping, but the rest is all estimates).
- Spatially separate from noise-induced tinnitus. In October 2019, I miscalculated and went to a trivia night. There were lots of inebriated people with loud clapping, and I came home with mild noise-induced ringing. From a 3D spatial perspective, it was entirely separate from the Wellbutrin-induced and it felt like my brain mapped the location each sound was coming from. It felt like one was in my ear and the other was outside of it.
- sound intensity is strongly correlated with fullness around ear and neck discomfort
- does not worsen with any psychotropic substances or medication I have taken since. No changes from caffeine, alcohol, or any of the following prescription medications I have taken since: Macrobid, Amoxicillin, Ciprofloxacin, Bactrim, Cefdinir, Tamsulosin, Propofol (strangely enough, after a surgery today, the tinnitus was 99.9% eliminated temporarily. I will see how long this will last)
What have I tried?
- CBT: This has been helpful unless I am going through a depressive episode which strongly correlates with a spike in my anxiety
- ENT first visit: "see audiologist"
- Audiologist visit: low-end hearing loss in right ear. I've had low-end hearing loss before in my left (possible Eustachian Tube Dysfunction due to a deviated septum), but the drop was negligible
- ENT second visit: "nothing I can do for medication-induced tinnitus"
- Chiropractor: weekly to bi-monthly visits starting in February 2020. Sometimes improves tinnitus, sometimes worsens
- Massage therapist: Same as above, but she starting reducing the number of appointments. We essentially tried to massage every possible muscle that could impact the ear
- Massage ball: Would ram this against the base of my skull where the sternocleidomastoid muscle meets the skull. VERY interesting findings: At certain points, all internal sounds went dead silent for about 30 seconds. It was silence as pure as it can possibly be and very eery (quieter than anything I remember hearing as a kid). I stopped doing this because the massage therapist said there are arteries in the area and this could be potentially dangerous
- ENT third visit (different ENT): "muscular-based tinnitus, nothing I can do"
- Cervical traction device: I came across an oft-cited abstract of the Chronic Cervicogenic Tinnitus Rapidly Resolved by Intermittent Use of Cervical Collar (nih.gov) case study and decided to try this. I couldn't get ahold of a semi-hard cervical collar, so I used an inflatable cervical traction device instead. This failed miserably and I stopped immediately after I started seeing flashes in my eyes and an increase in tinnitus symptoms
- ENT fourth visit (first ENT): I had written down all of my findings and finally got them to agree to an MRI and an MRA (both with contrast).
- MRI: came back negative. No abnormalities
- MRA: came back negative. No abnormalities
What I am trying next?
- NUCCA chiropractic
- TMJ Disorder evaluation
- See if I can get involved in clinical trials somehow?
Conclusion:
After the MRA results came back earlier this week, I was so upset, I chucked a pair of my glasses across my house. I am rarely an angry person, but this one got to me because I spent the last year-and-a-half studying anything I could. Because my tinnitus is not constant and has exhibited mildly pulsatile symptoms, I was so sure this was objective tinnitus and am completely devastated. My close relatives told me they have never seen someone react so upset to a negative MRA, but that was a truly awful day.
What happened to the psychiatrist? She completely abandoned me. An ethical doctor and one that would prescribe as little medication as possible when she treated me, she is someone I greatly respect as a diagnostician, but her bedside manners are appalling. I submitted an FDA MedWatch form in early 2020, but there's very little chance that it will make it into their database. I self-filed and as a software developer, I will not be taken seriously in a medical write-up, especially after I was stupid enough to toss the batch number. I'm hesitant to review her because even though my state does have anti-SLAPP laws, I really don't want to go through any legal headaches in the worst-case scenario. Ultimately, I wrote her two emails (one four months after the last appointment and one one year after to document my progress), but received no response.
My ENT has proposed two more options: tinnitus pitch-matching by an audiologist (whatever this means, but it is useless since, as I mentioned before, my tinnitus is not constant and frequently changes tones and intensity) and amitriptyline. I have PSSD/SSRI-induced PAWS, so I will not touch seratonin-reuptaking/blocking/agonistic medication of any kind, including tricyclics, under any circumstances, unless it actually cures tinnitus (and I mean "cures" very literally here).
Unfortunately, I feel very alone and in a David vs. Goliath situation here, especially given my lack of medical or biology background. I don't really know where to go next and am slowly coming to the realization this may be auditory nerve damage and experiencing something loosely akin to phantom limb syndrome for the ear. I think the one thing that has kept me going though is the oddity of my tinnitus symptoms which I have never seen in anyone else's accounts. Of course, this is purely anecdotal and maybe someday, I will visit the success sub-forum to be greeted with a post by someone with identical symptoms and a 100% resolution of symptoms that will work for me.
Special thanks to @dnl and @T_Almost_Gone for inspiring me to write this update as without them, I probably wouldn't have even bothered.
Words of Encouragement for Others
And finally, if you made it this far and you have Wellbutrin/Bupropion-induced tinnitus in its early stages, remember that we are all different and your situation has a good chance of resolving. I suspect I'm in the minority here. I had Ciproflaxin-induced tendinitis and panicked when I saw "floxie" stories where people recorded chronic tendon pain. I stopped taking it and it went away shortly after with no further flareups. Chances are, you'll be fine, so stay strong and keep your chin up as best as you can!
TL;DR: Skip preface
Note: I want to preface everything here and disclose that I do have clinically-diagnosed anxiety disorders and a depression disorder. I've been a pessimist my entire life, but I want any readers to be aware that this could be playing into the tone of my writing, and that just because this happened to me, does not mean it will happen to you.
I don't usually post or frequent this forum anymore as I don't have much hope for my situation, but I wanted to at least get my update out since I see others have been doing the same. If you are looking for a success story, this unfortunately, is not one, but for those brave souls who can stomach the read, I wanted to update everyone as I just passed the 23 month mark 2 days ago.
Preface (skip this for quicker reading):
On June 18th, 2019, I went through my usual hygiene routine: brush teeth, wash face, all the fun stuff. I had been prescribed Wellbutrin SR 100mg and the first two days of this medication were eventful...in a good way. I had a computer science exam coming up the next day and I was still going through acute withdrawal from chronic SSRI use which I had chosen to discontinue due to severe side effects and diminishing efficacy (in essence, SSRIs did not work anymore for me like they once had), so I had been severely depressed. When I took the Wellbutrin SR pill on the first morning (June 16th), my depressive symptoms went away almost instantly and the newly-found motivation was so profound, I managed to cover the content for the exam in about 6 hours (I don't cram, but I was lagging behind and the day after, I had other plans that conflicted, so this needed to be a big study day). However, things changed on the third day. I took the pill and unfortunately, that is when my adventure with tinnitus began. To describe it, I was experiencing bilateral pulsatile tinnitus that was worse in the evenings.
I'm a person who was extremely cautious growing up. In 2008, I went to a middle school graduation dance which was the last large-scale public event I ever went to without earplugs because this was around the time when I learned that the temporary ringing and muffling was due to alleged cilia cell damage and not just "ear fatigue" as everyone would allude to. At the time and up to the time I went to university, I was an aspiring audiophile and loved headphones, so I knew I had to be careful. Sometimes, I'd listen to music on the bus and would barely hear anything, but I knew a few minutes of music on a loud bus sporting a Cummins engine was not worth the potential damage down the line.
Anyways, I digress. So on June 25th, 2019, I contact my psychiatrist and say that I can't take it anymore. I must come in and change things out. She agreed and we had a conversation. Ultimately, I was put on Wellbutrin XL 150mg. You might be asking, "Are you nuts? Why would you take that AFTER you acquired tinnitus?" at this point. I don't blame you, but there's some nuance here: I had been prescribed this before alongside SSRIs and had zero side effects. No tinnitus, no terrible anxiety, no anything (except for the time when I was on Effexor XR when I went through what I perceive was a hypomanic episode, but I don't really know as there was no clinical diagnosis, but I lost a huge chunk of money buying a car and selling it a week later because it "wasn't good enough" [I have no history of risky and stupid decisions like this in the past]). In short, my suicidal ideations, lingering sexual side effects, and emotional blunting were bad coming off of SSRIs in May 2019 and Wellbutrin XL 150mg was so effective the first time, I named it "The God Pill". I was doing very well on just the Wellbutrin back in November 2018 before I came off antidepressants entirely the first time. This second time, unfortunately, I had made a fatal mistake and on June 26th, 2019, my life was altered forever. The ringing started in my right ear.
Over the next few days, the ringing in my left ear went away 100% after I stopped the Wellbutrin SR 100mg. Three days in, I email the psychiatrist begging to get off of this ASAP, but she told me to stay on it for a month. I usually followed my instincts, but this time, I followed the doctor's advice to be a "good patient" since I had a reputation for coming off things on my own. On July 19th, 2019, I took my last dose of Wellbutrin and consequently, all antidepressants, but the right ear problem is something I battle with to this day.
I'm putting the rest of this in bullet form to make it a quick(er) read, but if anyone wants more information, I'd be more than happy to elaborate
Qualities of Tinnitus:
I have never been able to relate to anyone else: Wellbutrin-induced, medication-induced, or any other folks afflicted with tinnitus.
- Purely unilateral. I have zero tinnitus in my left ear
- Not constant, almost pseudo-pulsatile. I have no category because I go through several tones and "pings" and they fluctuate every few seconds. It is a whooshing sound that is triggered by posture and can range from near silence to a good 70-80 dB. Pings reach 14 kHz but the rest of the sounds are maybe in the 10-12 kHz range (I pitch-matched the ping, but the rest is all estimates).
- Spatially separate from noise-induced tinnitus. In October 2019, I miscalculated and went to a trivia night. There were lots of inebriated people with loud clapping, and I came home with mild noise-induced ringing. From a 3D spatial perspective, it was entirely separate from the Wellbutrin-induced and it felt like my brain mapped the location each sound was coming from. It felt like one was in my ear and the other was outside of it.
- sound intensity is strongly correlated with fullness around ear and neck discomfort
- does not worsen with any psychotropic substances or medication I have taken since. No changes from caffeine, alcohol, or any of the following prescription medications I have taken since: Macrobid, Amoxicillin, Ciprofloxacin, Bactrim, Cefdinir, Tamsulosin, Propofol (strangely enough, after a surgery today, the tinnitus was 99.9% eliminated temporarily. I will see how long this will last)
What have I tried?
- CBT: This has been helpful unless I am going through a depressive episode which strongly correlates with a spike in my anxiety
- ENT first visit: "see audiologist"
- Audiologist visit: low-end hearing loss in right ear. I've had low-end hearing loss before in my left (possible Eustachian Tube Dysfunction due to a deviated septum), but the drop was negligible
- ENT second visit: "nothing I can do for medication-induced tinnitus"
- Chiropractor: weekly to bi-monthly visits starting in February 2020. Sometimes improves tinnitus, sometimes worsens
- Massage therapist: Same as above, but she starting reducing the number of appointments. We essentially tried to massage every possible muscle that could impact the ear
- Massage ball: Would ram this against the base of my skull where the sternocleidomastoid muscle meets the skull. VERY interesting findings: At certain points, all internal sounds went dead silent for about 30 seconds. It was silence as pure as it can possibly be and very eery (quieter than anything I remember hearing as a kid). I stopped doing this because the massage therapist said there are arteries in the area and this could be potentially dangerous
- ENT third visit (different ENT): "muscular-based tinnitus, nothing I can do"
- Cervical traction device: I came across an oft-cited abstract of the Chronic Cervicogenic Tinnitus Rapidly Resolved by Intermittent Use of Cervical Collar (nih.gov) case study and decided to try this. I couldn't get ahold of a semi-hard cervical collar, so I used an inflatable cervical traction device instead. This failed miserably and I stopped immediately after I started seeing flashes in my eyes and an increase in tinnitus symptoms
- ENT fourth visit (first ENT): I had written down all of my findings and finally got them to agree to an MRI and an MRA (both with contrast).
- MRI: came back negative. No abnormalities
- MRA: came back negative. No abnormalities
What I am trying next?
- NUCCA chiropractic
- TMJ Disorder evaluation
- See if I can get involved in clinical trials somehow?
Conclusion:
After the MRA results came back earlier this week, I was so upset, I chucked a pair of my glasses across my house. I am rarely an angry person, but this one got to me because I spent the last year-and-a-half studying anything I could. Because my tinnitus is not constant and has exhibited mildly pulsatile symptoms, I was so sure this was objective tinnitus and am completely devastated. My close relatives told me they have never seen someone react so upset to a negative MRA, but that was a truly awful day.
What happened to the psychiatrist? She completely abandoned me. An ethical doctor and one that would prescribe as little medication as possible when she treated me, she is someone I greatly respect as a diagnostician, but her bedside manners are appalling. I submitted an FDA MedWatch form in early 2020, but there's very little chance that it will make it into their database. I self-filed and as a software developer, I will not be taken seriously in a medical write-up, especially after I was stupid enough to toss the batch number. I'm hesitant to review her because even though my state does have anti-SLAPP laws, I really don't want to go through any legal headaches in the worst-case scenario. Ultimately, I wrote her two emails (one four months after the last appointment and one one year after to document my progress), but received no response.
My ENT has proposed two more options: tinnitus pitch-matching by an audiologist (whatever this means, but it is useless since, as I mentioned before, my tinnitus is not constant and frequently changes tones and intensity) and amitriptyline. I have PSSD/SSRI-induced PAWS, so I will not touch seratonin-reuptaking/blocking/agonistic medication of any kind, including tricyclics, under any circumstances, unless it actually cures tinnitus (and I mean "cures" very literally here).
Unfortunately, I feel very alone and in a David vs. Goliath situation here, especially given my lack of medical or biology background. I don't really know where to go next and am slowly coming to the realization this may be auditory nerve damage and experiencing something loosely akin to phantom limb syndrome for the ear. I think the one thing that has kept me going though is the oddity of my tinnitus symptoms which I have never seen in anyone else's accounts. Of course, this is purely anecdotal and maybe someday, I will visit the success sub-forum to be greeted with a post by someone with identical symptoms and a 100% resolution of symptoms that will work for me.
Special thanks to @dnl and @T_Almost_Gone for inspiring me to write this update as without them, I probably wouldn't have even bothered.
Words of Encouragement for Others
And finally, if you made it this far and you have Wellbutrin/Bupropion-induced tinnitus in its early stages, remember that we are all different and your situation has a good chance of resolving. I suspect I'm in the minority here. I had Ciproflaxin-induced tendinitis and panicked when I saw "floxie" stories where people recorded chronic tendon pain. I stopped taking it and it went away shortly after with no further flareups. Chances are, you'll be fine, so stay strong and keep your chin up as best as you can!
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