My Dilemma — How Do I Stop This Vicious Cycle, Issues with Medications

I'm in a heck of bad catch 22 dilemma, that I could sure use some advice on. I had an ototoxic reaction a few weeks ago after taking 1 zantac 75.

It's not listed as ototoxic but for some reason it really spiked up my tinnitus right after I took 1 of them. I stopped taking them of course. That was 6 weeks ago, and I don't know if I got used to it, or that the spike and tinnitus increase did go away. Since then I just had what I think is another ototoxic reaction after taking medications for sleep that I have been taking for over 20 years with no negative effect on my ears or tinnitus at all. They are clonazepam .5 once at bed time, and seroquel 125 mil at bed time.

Even though both of these are not listed as ototoxic they seem to be to me, I have no idea why ? I would just stop taking them, but I have been on then so long, that I would guess I can't just stop taking them, I would need to taper off of them slowly. But here is the dilemma I don't have time to taper off of the slowly, every day that I take these medications that still seem to be ototoxic to me and are still most likely still doing more damage every day to my ears and causing a spike an increase in my tinnitus.

How do I stop this vicious cycle, and the damage to my ears and tinnitus? It's getting impossible to go on like this, I can't get any sleep, this just can't go on I have to do something. I know that a lot of this makes no sense not even to me but it is happening nevertheless. These medications none of them are supposed to even be ototoxic.

Plus I have been on them for almost 25 years with no problems.

Why a change now? why are these medications all the sudden a threat to my ears and my tinnitus? Was it that 1 zantac? that started the trouble? Did that somehow weaken my ears, to the point that now these other medications that never were a problem before are now a threat to my ears? that's the best explanation that I could come up with.

I just don't understand this at all, none of it logical.



Any advice would be greatly appreciated


Thank You


Louie

Quietatnight

 

Hi there. I don’t really have an answer for you but I can tell you that my own T has massively got worse since November. I don’t know if it was amoxicillin or restarting setraline. I’ve had T since 1992 and had got used to it after the initial thoughts of S.
I can understand how frightening this is for you Louie and T doesn’t do logic. Can you think of anything else that might have happened? Are you more stressed than usual?
Try not to panic, sending hugs.
Eve

 

@Nanny chocolate


Thank You for getting back to me on this. I was racking my brain when it first started asking myself the same questions, could it be something else ? I gave that a lot of thought yes I have been under a lot of stress, but I'm almost always under a lot of stress in my life. I guess it could be a factor. May I ask it sounds like you were exposed to a couple medications, are they listed or considered ototoxic ? When your tinnitus got worse in November what changes did you notice,,,for me, I can now hear my tinnitus over running water in my sink, and over my TV were as I could not before. I can also now hear it a bit over the shower is that the case with you if i may ask ?
One more question if you remember, after these medications that you were on that caused your tinnitus spikes, once they were out of your system did your tinnitus go back down even some ?

Any info or advice is appreciated


Thank You for getting back to me Hugs back


Louie

Quietatnight

 

Hi, no the antibiotic is supposedly not. Setraline can cause or make T worse. I didn’t know that and now I’m having awful effects from the AD too. Life doesn’t seem worth living just now. I can hear the T over everything including the shower. Miserable doesn’t cover it. Mine hasn’t gone down yet. I live alone so I don’t have a lot to distract me from it. Yours might settle Louie, give it some time. Hugs Eve

 

@Nanny chocolate


I feel so bad for you I feel the same way myself. and live alone also. I fee like I have lost everything since this happened and very concerned about the future if there is any. Here it is 4:00 AM and I'm wide awake I have been trying to sleep since 9:00 PM last night and I still only got in about 3 hours of scattered weak sleep. It was more like a twilight not sleep. I just don't know how long I can keep this up. The days are just as bad as the nights now. I have never had this happen to me in my entire tinnitus life. I always get better after a good night sleep my my tinnitus has always reset it's self to my baseline. I'm thinking about taking my serquel tonight in hopes of getting in a good long sleep maybe that will help if it doesn't do more damage, I'm scared to death of that I could not stand that. I did not take it last night, but I guess if i don't get back on it that I could end up with some serious withdraw side effects because I have been on it for so many years. At lease that's what I have heard and read, so maybe i don't have a choice.


Thank You for your kindness Eve

PS: I just noticed that your tinnitus was caused by an audiologist ? That's how I got hyperacusis from an audiologist doing an LDL test on me big mistake. I regret that ever since damn doctors do more harm then good it's very sad. I truly believe that I would not be in the spot I am right now if I would have never took that 1 zantac that my GI doctors assistant told me to take for my acid reflux. I regret that also.

 

Well aren’t we a miserable pair. I’ve had T for a very long time and have hearing loss. I habituated and have worked, Counselling Therapist, with it alongside. I pretty much can’t do anything just now. I don’t understand why T is now so dreadful and hard to cope with.
I have children and small grandchildren and they try to understand why I’m not coping. When I say ‘I can’t’ to something they don’t really get it.
Take something to help you sleep tonight so you have some respite.
I sense you are not in the UK like myself? I’m so fed up with not being able to live my normal life. Hug Eve

 

Yes we are a miserable pair that's for sure, and I'm so sorry that we both have to endure such a horrible health challenge. I don't know how we got here ? I'm in a very dark place right now that I have never been at before. And I have no idea what to do at this point. I know that I can not continue like this, it's now impossible for me to go on living like this, I just can't it's too hard.


I'm sorry for the very sad letter I'm just in shock at this point.

What a horrible way to start off 2018

Louie

Hugs back

 

I am sorry to hear that your T has gotten so much worse @quietatnight

My T also changed drastically last year after 20 years of coping I found myself in deep trouble getting through the days and nights. I have very severe T in both ears that changes several times through the day and consists of 4-5 different tones and I hear it over absolutely everything. I should also mention I have severe hearing loss on both ears and I wear hearing aids to be able to communicate.

The only thing I can think of that made my T so much worse, was that I suffered from major anxiety due to stress and now later depression. It has now been 6 months since it started, and I am doing my best to adjust to my "new" T.
It is hard after so many years of coping, suddenly you are not able to cope.

I just want you to know that you are not alone, and I urge you to try to relax, get sleep, eat well and give it some time.


I wish you all the best!

 

@Makrohn

Thank You for your kind and understanding words if ever I need it them more it's now, and I appropriate them very much...

I'm so sorry for you too, that you are suffering like me, I can't even imagine what you have been going through with the hearing loss on top of the increase tinnitus, It has be horrible for you.

I do find it interesting that you feel your cause was because of "major anxiety due to stress and now later depression" I would not think that could do that to a person.

And your right, like you I have been copying ok for all these years, It's hard for me to understand how it could all change with the drop of a hat, or in my case by taking one zantac, or my sleeping medications that I have been taking for all these years, I was even on a taper getting off of them for the past month when this happened.


Anyway,,, I wish You all the best too


Good luck

 

@quietatnight,
It could be your tapering off meds before this all started for you.
Any medication that works on the brain can cause tinnitus spikes and mood changes .
Have a chat with your doctor on the best course of action to take with meds and low mood.
Love glynis x

 

Ok, I will it's a great idea.

I have tappered off of medications before with no problems Xanax was the hardest one for me, but I did get off of it after a long time. Ativan was easy for me to get off of. I have been on a mission too be totally drug free by 2018 that was my New Year resolution.

Thank You

Louie

 

@quietatnight

Yes, it has indeed been the worst periode of my life, no question about it.
I have no other explanation that my anxiety and depression caused this new type of T. It came at the same time, and my anxiety almost was extreme. It led me into depression, and my T kept changing and fluctuating like never before. I have been recovering since that, but still my T is very hard to cope with, and I believe my body is still influenced by the stress all that anxiety caused me. At least.. that is my hope in all of this.

I hope we both will find some relief shortly... stay strong my friend!

 

Hi @quietatnight, sorry to hear you're in a rough spot again. None of these things sound "ototoxic" to me. That word means "chemical damage to the ear", and I do not believe any of these medications have that documented. Klonopin is the most worrying; benzos definitely have tinnitus as a side effect and withdrawal effect, but even though the vestibular impact is well documented, no one has ever found a "smoking gun" that would imply benzos are actually ototoxic -- if anything, they're toxic to the larger nervous system.

There's not much rhyme or reason to any of this, and you may never really know what triggered your change in physiological and psychological function, but it's incredibly unlikely to be related to one Zantac tablet.

I don't want to unduly alarm you, but -- you've been taking benzos and antipsychotics for 20 years. 0.5mg of Klonopin isn't a huge dose, but it's not a small one, either, and Klonopin doesn't leave the body fully for more than 30 days, so if you take it every day over a long period of time, it gradually accumulates, leading to constantly high levels in blood, causing tolerance and eventually dependence and possibly tolerance withdrawal.

So, if we're looking at drugs as a cause of your current problems -- as I've said before I'd bet on it being the benzo or the antipsychotic, one thousand to one over the Zantac. I know a lot about benzos and have over the last couple decades communicated with a couple hundred people who were withdrawing or had withdrawn from them and were still dealing with the fallout months/years later. If you haven't read this, you should, as should anyone contemplating long-term benzo use.
https://www.benzo.org.uk/manual/

The ability of benzo and withdrawal to cause or worsen (long term or permanently) tinnitus and other weird body problems is unfortunately well documented. Of course, our bodies and brains naturally degrade in function and structure over time, so it's certainly possible things got "randomly" worse. You're in a complex medical situation that needs good support and management by qualified doctors; I don't know that anyone online is gonna have too much insight into what's really going on.

I have at least one friend who had tinnitus show up as a side effect of benzo use (not withdrawal), but not until she'd been using them with some regularity (though not daily) for a number of years. She said that one day she just noticed that whenever she'd take a benzo her ears would ring, and I think she stopped taking benzos as a result.

 

Hi, we’re all trying to support each other. Glynis sounds to be a darling, I think she is part of the UK T advice service?
I have an appt next month at Hospital to talk to T specialist audiologist. So many people tell me they have T but, like pain, it’s hard to compare. I wonder if it’s more difficult when our T frightens us when it changes, both ears and multiple noises. If we’re already stressed and struggling then our resources are down. My son is completely fed up with me and says I’ve been miserable forever. Thanks, I think it’s because no one knows how to make it better, including ourselves.
Bedtime has now become something to dread instead of a safe place. Louie take something to help you sleep tonight. Hugs Eve

 

@linearb


I read your post it sounds like you have did a lot of research and talked to a lot od people about ototoxic medications ans seems very factual. If I'm understanding it correctly you are saying that none of the medications that I took the zantac, clonazepam or seroquel would not have had an ototoxic effect on me because they are NOT ototoxic medications. I have heard the same thing from my doctors and pharmacist they all agree. I had forgot 1 last medication that I do take every day was well, like most people that have acid reflux is prilosec OTC. Like the other medications that we talked about I have been taking those for many years as well. Do you know if that medication falls under the same category as the other medications ? I was just wondering.

I did have one more question this friend that had a side effect of tinnitus that said "whenever she'd take a benzo her ears would ring, and I think she stopped taking benzos as a result."

May I ask did her increased tinnitus or ringing lower back down after she stopped taking benzos ? I was just wondering if you know.

I did not quiet understand about what the withdraw effects are for people when they get off of the medications ? Are you saying that it could cause tinnitus or increase people who have tinnitus if they don't tapper off them too fast ?



Thank You for taking the time to post on my thread, it was very informative and educational, I never knew most of it.


Louie

Quietatnight

 

thanks, but do be a little careful, I have no medical background and I am not as clever as my vocabulary might imply

Right, none of these drugs are known to directly cause damage to hair cells or to the auditory nerve, so they're not properly "ototoxic". Benzos, and especially benzo withdrawal, are certainly associated with tinnitus -- so we have to, I guess, suspect a "non-ototoxic" reason for that. The most compelling idea I've seen comes from some data showing overall lower densities of BDZ, the receptor that these drugs bind to, in specific brain regions in tinnitus patients. Additionally it is well known that benzo use, especially long-term benzo use, causes the number and function of BDZ receptors to change. So it may be that benzos, or benzo withdrawal, "turn on tinnitus" by basically breaking the brain's filtering mechanism, allowing too much information to cascade around.

I have also seen some suggestions of direct vestibular damage as a result of benzo withdrawal (but not use); benzo withdrawal is notoriously hard on the nervous system and can lead to all sorts of weird problems.

I don't think she ever took them more than once in a while (her husband takes them regularly and has for years). She would take them to relax or focus on stuff, but I think that once she started to notice tinnitus from them she just stopped taking them.

Yes, 100%, especially with benzos though I would not be surprised if seroquel withdrawal could cause the same problems since it also acts on the GABA system to some degree.

Slow, slow reduction can help to some extent, but it is no guarantee that it's going to prevent tinnitus or other problems.

Some people think that when someone has been taking benzos for a really long time, the body can become tolerant to its effects, to the extent that you can start to get withdrawal symptoms while you're still taking the drug. In many cases, people who think that has happened to them who have slowly withdrawn, eventually decide that they were right and that they feel a lot better off the drug. On the other hand, some people have problems withdrawing and never feel that they completely recover, and some people withdraw and decide that their original problems that led them to take the drug in the first place are still a problem, and go back on.

There's no one size fits all thing. Based on my own experience I am generally pretty dismal about the idea of long-term benzo use, but I have a sibling (who must therefore on average share a lot of genes with me) who has taken Klonopin for a decade and a half and has no plans of stopping. These days I limit my use to a few times a month at most, but when I struggle with tinnitus or anxiety for long periods of time, sometimes I still consider just going back on it. I believe one of my siblings had a father in law who took Valium daily from the age of 35 until he died at 70, never had problems with it, never had to increase his dose.

Whatever is causing your current discomfort, I hope it is short lived, and that you find some peace and comfort in the new year!

 

@linearb

Well I ended up taking 1 clonazepam about 1 hour before around 11:00 PM before I tried to go to sleep at 12:00 . I could not fall asleep until 12:45. I did sleep until 3:45 so II got in 3 hours of sleep, I guess it's better then nothing. But now it's 4:00 and I'm wide awake and feel like crap. But I habve not had any decent sleep in 3 nights and hve missed 3 night doses of my seroquel so I would think i should feel like crap. I'm tired, I have a headache , I feel spacey and out of it and mentally and physically exhausted. I'm sure if i looked it up these are all signs of withdral from the sequel and sleep deprivation that I'm sure I'm suffering from. I'm going to have to take my chances and take my sequel dose tonight and hope that it does not do to me what happened last time, what ever it was an ototoxic reaction issue I sure hope not or I don't know ? maybe I just imagined it ? and make my tinnitus worse, that would be a disaster I'm terrified to take it, but I know that I have to, to get out of this mess. I'm sure not going to take the clonazepam and seroquel at the same time again that's for sure maybe that was the problem last time.


Thank You for getting back to me I appreciate it, I wish I would have met and talked with you a long time ago. Maybe things would be different. I sure would have got off these medications a lot sooner. Who knows maybe they have nothing to do with what I'm going through now anyway. Could me My OCD messing with me, blowing things way out of portion that has happen to me so many times before in my life I have lost count, it tends to magnify the tiniest symptoms into something that they are not really at all.

 

@linearb

I was wondering if there if it's possible for us to have a short telephone conversation I seer that your on the east coast, I'm only in IL maybe we could I could give you my phone number in an email, let me know if that's ok with you and I'm including my direct Email address. I just have a couple of questions that I would like to ask and I just think it would be faster and clearer that way. I understand if you don't want to due to privacy issues.


Please let me know, I would appreciate it. It would really help me out.



Thank You


Louie

compex73@aol.com