Amitriptyline Drastically Worsened My Tinnitus & Visual Snow Syndrome

[DoesItStop]

Hi all - just created an account. I was diagnosed with Visual Snow Syndrome last September and just recently was prescribed Amitriptyline.

I had very mild tinnitus before and now, after taking the Amitriptyline for 10 days, it's a blood curdling scream and piercing my ears. It's been over two weeks since this drastic change. I also have a strong metallic taste in my mouth at all times, in addition to worsening of all my other VSS symptoms.

Is there any hope of this lessening? I sleep 1-2 hours per night. My tinnitus volume and frequency only getting higher. My brain was already unable to filter out excess 'noise' so now it seems I'm in big trouble.

Any thoughts? At this point thinking I'd try rTMS or stem cell therapy as it feels like this could be a life or death issue. Never sleep anymore, totally debilitated.

 

[RadioKid722]

Two years ago, I was only getting 2 hours of sleep per night for a period of 8 months, due to suffering from undiagnosed bipolar mania and auditory hallucinations from undiagnosed schizoaffective disorder.

I tried to kill myself because I was so sleep deprived.

After I wound up in the hospital from my suicide attempt, they diagnosed my issues and prescribed me Seroquel. I now get a full 8-10 hours a night of sleep.

Please see a doctor (a neurologist or a psychiatrist) about your sleep issues. 2 hours of sleep per night is not enough. Tinnitus may make it harder to fall asleep but you should get sufficient sleep once you have fallen asleep.

 

[JimmyR]

I'm sorry to hear this, DoesItStop. I suggest you get a hold of Dr. Chris Winter (Charlottesville Neurology and Sleep Medicine): neurologist and sleep doctor. He's in Virginia but can do a remote appointment via internet. I thought a lot of my tinnitus might be due to a sleep disorder and had an appointment with him last fall. It was very informative. He is interested, listens, and figures things out, which is so nice to have in a doctor. He may be able to point you in the direction of a doctor in your area to follow up with.

By the way, Winter recommended I read his book before the appointment, which I did. One tidbit from the book is that insomniacs (which I'm not) are likely sleeping a lot more per night than they realize.

I have been using Diphenhydramine for about six months with considerable success. I take about 1/4 of a dose ("dose": 50 mg, so I'm taking about 12 mg) of the red or purple syrup marketed as a sleep aid that you see in bottles in the drug store. I take it right before bed. About 80% of the time I have considerably less tinnitus the next day. Winter recommends avoiding it as much as possible because it is now being linked to dementia. (Stands to reason: it's an anticholinergic, shutting down this neurotransmitter might not be a great idea.) I'm going to try to get off of the Diphenhydramine if I can, but I don't know how at the moment. It works.

 

[DoesItStop]

Yes, I used Unisom sleep tabs for many years, so I won't use any anticholinergic drugs for sleep for that reason. I was even hesitant to try Elavil for that reason, with no thought about ototoxicity of course.

I will reach out to Dr. Winter, sounds like he was really able to help you. Did he help with the tinnitus at all or just the sleep?

Taking Diphenhydramine is really not much of a solution, and that is actually how I think I got visual snow (I was taking Doxylamine Succinate half a tablet for years nightly).

I'm particularly interested to know if you've found anything to help with the tinnitus, as mine is screaming all the time. Hard to imagine being able to sleep like a regular person given the volume.

 

[JimmyR]

I will reach out to Dr. Winter, sounds like he was really able to help you. Did he help with the tinnitus at all or just the sleep?

No, he only helped me understand what my problem was in just one visit. He talked me through it and helped me understand that tinnitus is the cause of my problem (bad mood, feeling as though I slept poorly), rather than a symptom. I told him, "No, I don't mind that sound. I ignore it. It's just that when its loud I'm in a bad mood and when it goes away I feel great. So, something is causing both the bad mood and the tinnitus." I believed this for ten years! He said, "No. It's the tinnitus causing the bad mood. It's like a noisy machine. When someone turns it off everyone in the room feels relieved and no one realizes it's driving them crazy until someone turns it off." This was a revelation to me.

He said I likely don't have a sleep disorder (after listening to my description of my sleep habits). He also made an astute recommendation, which unfortunately didn't pan out. Given that I have tinnitus almost entirely (99.9%) in my left ear only, that my hearing loss (upper register left ear) occurred after the onset of tinnitus, not before, and that the tinnitus comes and goes, he suggested an MRI to check for an acoustic neuroma. The ENT didn't think of that.

The MRI showed nothing, unfortunately. But it was worth a shot. So, no substantive help from Dr. Winter other than after ten years I now understand what's wrong with me. He listens and is sharp as a tack. He is a neurologist as well as a sleep doctor, so I thought he might be able to help you. If you tell him visual snow, tinnitus, sleep and the rest of your story, his brain will start working and, I hope, point you in a good direction.

I found that Doxylamine Succinate doesn't knock my tinnitus down nearly as much as Diphenhydramine. Over the last two weeks, I've been using Amitriptyline (10 mg and as of a few days ago only 5 mg) plus 12 mg Diphenhydramine (syrup) at bed time. I think the Diphenhydramine is doing most of the work, but the Amitriptyline seems to help it do so. They seem to keep my tinnitus below a 4 on a scale of 0 (no tinnitus) to 10. Below 4 my mood is not much affected. It just sounds like crickets or a faint whistle. When my tinnitus is 4, 5 or 6, it is very difficult to go through my day. 6 is horrible. I'm assuming 7-10 is what people who have it even worse experience.

My ENT says the goal would be to keep the tinnitus low for several months and then try to go off the anticholinergics.

These anticholinergics are my last shot at a final solution before I give up and just accept that I need to meditate a lot every day. Meditation helps a lot for me, but it requires three times a day, 20 minutes/time, which is very hard for me to keep up with. It will have me feeling well, and then of course I stop doing it and the tinnitus worsens. It's very frustrating.

 

[Bruce NH USA]

Hi all - just created an account. I was diagnosed with Visual Snow Syndrome last September and just recently was prescribed Amitriptyline.

I had very mild tinnitus before and now, after taking the Amitriptyline for 10 days, it's a blood curdling scream and piercing my ears. It's been over two weeks since this drastic change. I also have a strong metallic taste in my mouth at all times, in addition to worsening of all my other VSS symptoms.

Is there any hope of this lessening? I sleep 1-2 hours per night. My tinnitus volume and frequency only getting higher. My brain was already unable to filter out excess 'noise' so now it seems I'm in big trouble.

Any thoughts? At this point thinking I'd try rTMS or stem cell therapy as it feels like this could be a life or death issue. Never sleep anymore, totally debilitated.

Interesting experience with Amitriptyline, DoesItStop. I'll share my experience with the drug.

I have had chronic fatigue syndrome for 32 years (I'm 59), and for most of that time, my CFS was in remission. I also have had very low level tinnitus, I would say it was about a one or two on a 10-point scale.

All of that changed with COVID-19. My stress levels went through the roof, and my CFS came back with a vengeance. To top it off, in mid-November of last year, I got a Moderna COVID-19 booster shot, and 3 days later my tinnitus went up to about a 6 or 7.

I was on Amitriptyline to treat the CFS for about 24 years, from 1991 to 2015, finally ending at about 10 mg per night. I was feeling so good that I finally just got off of it with no problem.

When COVID-19 hit, I went back on it to get myself some sleep. I eventually got up to 20 mg per night, and slept like a baby. I had no issues with tinnitus, either at that time, or the previous 24 years of using the drug.

Once I had this terrible bump in tinnitus in November, I was having a terrible time sleeping. I tried Amitriptyline on a couple of occasions in December and early January of this year, and I felt like it spiked my tinnitus, a bit. However, I thought that might just be in my head.

So my doctor convinced me to go back onto the Amitriptyline at the end of January. I started with 10 mg, and worked my way up to 15 mg. It was having very little effect until about 2 weeks ago, when after 4 weeks on the drug, I was finally starting to sleep pretty well. I thought things were going great! But about 10 days ago, I found my tinnitus was a lot louder, more high pitched and piercing, and constant. Previously, if I was really relaxed, I could get the tinnitus to calm down to a level that was acceptable. Now it is very rarely that way, and it is freaking me out.

I sent an email to my doctor, and he recommended I stay on the Amitriptyline, that he did not think that was the cause of the spike. I do suffer from anxiety and depression, and I know there is a psychosomatic component to tinnitus, so I don't know what to think.

My solution is to give this another day or two at the current 15 mg, and if that doesn't eventually resolve, I think I'm going to very slowly get off the drug, and hope that the spike goes away.

I will add that I took the Amitriptyline from April of 2020 to June of 2021, and when I got off it, that time, I had a very slight spike in tinnitus for about a day, and then it went away. So my guess would be that if you get off the Amitriptyline totally, within a relatively short period of time it should resolve.

Best of luck to you!

Bruce

 

[DoesItStop]

Hi Bruce - I've been off Amitriptyline since the original 10 days I took it. I'm still at about a 9 or 10 on the scale of how loud it is, and also incredibly high pitched and energy behind it throughout my head. So it's been 6 weeks, and definitely no better despite the fact I'm sleeping a little more. Everyone's reaction is different, and I went off it at the same time I quit taking Xanax which I'd been taking for 7 weeks. So perhaps the combo got me. Either way, my quality of life has drastically reduced as you can imagine.

 

[Tasty]

I have heard bad stuff about Amitriptyline, especially for Visual Snow Syndrome.


How are you @DoesItStop?

 

[lymebite]

I have tried Amitriptyline a few times. Each time, after a few days taking it (at 25 mg per day), my tinnitus spiked, so I have discontinued it each time. The tinnitus spikes subsided and went back to baseline each time.

Interestingly, after the very first dose, my tinnitus would almost become silent the following day. But then 2 or 3 days later, it would spike. So something happened to cause the silence for one day, and then another something happened that spiked it a couple days later. So complicated, these meds are.

 

[DoesItStop]

How are you @DoesItStop?

Whatever the Amitriptyline did, it's has been permanent so far. I have a constant high pitched screaming ring centrally in my brain. The only thing that seems to help is working outside and outside noises - indoor speakers are completely ineffective at masking. Most of the time outdoors I can hear my tinnitus over everything, but sometimes when it's loud or I'm at the beach or really engaged in something my tinnitus fades in with all the other sounds. It's forced me to be somewhere where I can be outdoors as much as possible, as that is the ONLY thing that has provided any relief (albeit minor relief). The days when I'm stuck indoors or have to use a lot of screens are the absolute worst. And I haven't worked in 5 months; am basically on extended leave.

So yes, you could say that 10 days on Amitriptyline had a dramatic worsening effect on both my tinnitus and visual snow.

 

[Tasty]

Whatever the Amitriptyline did, it's has been permanent so far. I have a constant high pitched screaming ring centrally in my brain. The only thing that seems to help is working outside and outside noises - indoor speakers are completely ineffective at masking. Most of the time outdoors I can hear my tinnitus over everything, but sometimes when it's loud or I'm at the beach or really engaged in something my tinnitus fades in with all the other sounds. It's forced me to be somewhere where I can be outdoors as much as possible, as that is the ONLY thing that has provided any relief (albeit minor relief). The days when I'm stuck indoors or have to use a lot of screens are the absolute worst. And I haven't worked in 5 months; am basically on extended leave.

So yes, you could say that 10 days on Amitriptyline had a dramatic worsening effect on both my tinnitus and visual snow.

That's so ridiculous. Why is there medication that makes tinnitus worse instead of better? Like there are tons of medications but so few seem to have even a tiny effect.

I don't know mate, what are you looking forward to?

Feels like tinnitus isn't taken seriously enough, it's so rude.

Example, we have Deep Brain Stimulation for Parkinson's disease that can massively reduce symptoms. Well, it can also do that in tinnitus (different spot/stimulation) like studies suggest, but it isn't even approved for tinnitus yet because it's in Phase 1/2.

 

[kmiki]

I have tried Amitriptyline a few times. Each time, after a few days taking it (at 25 mg per day), my tinnitus spiked, so I have discontinued it each time. The tinnitus spikes subsided and went back to baseline each time.

Interestingly, after the very first dose, my tinnitus would almost become silent the following day. But then 2 or 3 days later, it would spike. So something happened to cause the silence for one day, and then another something happened that spiked it a couple days later. So complicated, these meds are.

@lymebite, can I ask, how soon after stopping Amitriptyline did your spikes go back to baseline?

 

[lymebite]

how soon after stopping Amitriptyline did your spikes go back to baseline?

Within a few days.

 

[Uklawyer]

I have just been given Amitriptyline to try. These stories don't help to encourage me to take it.

 

[sweetlolo]

I have just been given Amitriptyline to try. These stories don't help to encourage me to take it.

Have you tried Amitriptyline yet?

 

[Uklawyer]

@sweetlolo, not yet, no. I had a call with my psychiatrist yesterday and he suggested I try again to take it. Still don't know what to do.

What's your situation?

 

[sweetlolo]

@sweetlolo, not yet, no. I had a call with my psychiatrist yesterday and he suggested I try again to take it. Still don't know what to do.

What's your situation?

Very similar to yours with some extra mental health issues and chronic pain from hell. I am considering starting with 10 mg Amitriptyline tomorrow but I am so terrified of it causing a permanent spike. But it was either that or Cymbalta that was offered.

 

[Uklawyer]

Very similar to yours with some extra mental health issues and chronic pain from hell. I am considering starting with 10 mg Amitriptyline tomorrow but I am so terrified of it causing a permanent spike. But it was either that or Cymbalta that was offered.

I am sorry to hear that. It is really hard to know what to try and then to resolve to go ahead and try it. I am on Venlafaxine at the moment. I don't like taking it, but I don't believe it has impacted the tinnitus. My psych recommended starting at 5 mg I think and I am still hesitating. I would be concerned about taking higher, therapeutic doses (50 or 100+ mg) because of the stories you read about it, but you already know that.

I think that it does get better, but you have to be patient. Are you taking any benzos? I don't know if you have read my background, but Valium was a life saver for me when it first got intrusive.

 

[sweetlolo]

I am sorry to hear that. It is really hard to know what to try and then to resolve to go ahead and try it. I am on Venlafaxine at the moment. I don't like taking it, but I don't believe it has impacted the tinnitus. My psych recommended starting at 5 mg I think and I am still hesitating. I would be concerned about taking higher, therapeutic doses (50 or 100+ mg) because of the stories you read about it, but you already know that.

I think that it does get better, but you have to be patient. Are you taking any benzos? I don't know if you have read my background, but Valium was a life saver for me when it first got intrusive.

Dito. I was on 150 mg Venlafaxine for 2.5 years before switching to Fluoxetine and then Wellbutrin. What dosage are you on? I never had any issues with intrusive tinnitus until Wellbutrin. My doctor is starting me on 10 mg and wants me to titrate up to 50 mg in three weeks. I am having so much anxiety because of it but I am also in desperate need of relief from my other issues.

I have read your background! Unfortunately there is a restricted use of benzos in my part of the world, so it is really difficult to get it prescribed.

 

[Mister Muso]

It's very odd how Amitriptyline seems to make some people's tinnitus better, but for others it gets worse.

For those who had it get worse, I wonder is there some common factor, like sensitivity to drugs in general, or was your tinnitus originally caused by drugs or an infection?

My tinnitus was noise-induced and Amitriptyline was the main treatment that got me through the difficult early months, and it particularly helped ease my hyperacusis. I do recognise some people may not want to take the risk after hearing these negative reports.

 

[Uklawyer]

It is very strange, yes. And very annoying. How do you decide whether to take something like this or not? Ultimately I think it depends on how desperate you are. If you are, you may just go ahead and gamble on the toss of a dice.

@sweetlolo, I am on 75mg Venlafaxine right now. I went up to 150mg, but I wasn't seeing the results for the tinnitus and felt generally a bit uncomfortable taking it this time. It was the best of all the ADs I had taken for anxiety when I took it years ago at university, but it was also the worst in terms of side effects, and sat alongside Paroxetine for withdrawing. So I don't like upping the dose, even though I probably need to. I also don't know exactly what it does to the tinnitus (if anything).

Are you supposed to take Amitriptyline for neuropathic pain? I guess Gabapentin is another option, but hard to know which is best. Pregabalin seems a bit scary. I tried it before tinnitus got worse and it caused lots of dizziness.

Where are you that you can't get benzos for pain?

 

[Uklawyer]

@sweetlolo - how are things now?

 

[Tkenupp]

Sorry to bring this thread back, but I was prescribed Amitriptyline (25 mg) for migraines 1.5 months ago. Long story short, the last 3 months I've been on and off the E.R., specialists and so on trying to figure out other problems (chronic back/neck pain, fevers, paresthesia etc).

Two days ago I decided to start Amitriptyline as prescribed, seemed that the tinnitus got lower, however, today I got a massive spike for a few seconds on my left ear (high pitch), that was scary. What to do? @DoesItStop, did you get back to your baseline?

 

[DimLeb]

He said, "No. It's the tinnitus causing the bad mood. It's like a noisy machine. When someone turns it off everyone in the room feels relieved and no one realizes it's driving them crazy until someone turns it off." This was a revelation to me.

No shit, Sherlock. How is that a revelation? Doesn't it ring a bell (pun not intended) that so many people come here to seek help for a sound that is in their head and ruins their lives? And generally tinnitus is such a shitty condition, because you can't turn it off like that? Wow, what a genius doctor... he cures headaches by telling people to bang their heads onto the walls?

 

[Nick47]

Some studies show Amitriptyline helps tinnitus. It is, however, a potassium channel BLOCKER. That put me right off it!

 

[Tomas80]

Some studies show Amitriptyline helps tinnitus. It is, however, a potassium channel BLOCKER. That put me right off it!

What does that mean? Is Amitriptyline being a potassium channel blocker good or bad for tinnitus?

 

[Nick47]

What does that mean? Is Amitriptyline being a potassium channel blocker good or bad for tinnitus?

It depends what channels I suppose. This is only my research.

Amitriptyline is a non-selective blocker of multiple ion channels, in particular, voltage-gated sodium channels Nav1.3, Nav1.5, Nav1.6, Nav1.7, and Nav1.8, voltage-gated potassium channels Kv7.2/ Kv7.3, Kv7.1, Kv7.1/KCNE1, and hERG.

Wikipedia: Amitriptyline

There's LOTS of discussion on here about potassium channels. Surely you have seen some of it?

Amitriptyline does help some people and makes others worse, so go figure?

 

[Tomas80]

It depends what channels I suppose. This is only my research.

Wikipedia: Amitriptyline

There's LOTS of discussion on here about potassium channels. Surely you have seen some of it?

Amitriptyline does help some people and makes others worse, so go figure?

I'm not familiar with potassium channels at all, but I understand in layman's terms that one is looking for a channel opener, not a blocker. Even the reformulated Trobalt should be a channel opener. So, if the solution is to open the channels, Amitriptyline as a blocker is very unsuitable for tinnitus. Am I wrong?

 

[lymebite]

I have tried Amitryptyline several times.

Each time, the day after the first dose (25 mg) I would get almost complete silence from tinnitus.

The several days after that day of silence, my tinnitus increased from baseline. I got worried so I discontinued each time.

I have always wondered if I tried to "power through" and give it say a month, what would happen. But I never dared to do that.

I have no explanation for getting the one day of silence. And no explanation for the louder tinnitus in the days after.

 

[Nick47]

Amitriptyline as a blocker is very unsuitable for tinnitus. Am I wrong?

@Tomas80, yes, but it acts on lots of other receptors too.