Valdoxan (Agomelatine) Worsened My Tinnitus

And have you tried anything else since then? Anything of use.

I (and many others on here, I am sure) greatly appreciate your contributions here.

 

Thank you, I have tried so many things. I'm agonizing now, so it's very hard for me to write a coherent post.

In short, I tried so many supplements and medications in different classes like vasodilators, antivirals, antibiotics, antidepressants, antipsychotics, anxiolytics, but nothing stopped the progressive worsening of my tinnitus except for the GABA drugs that, however, lost efficacy quite quickly. I have always been on GABAergic drugs since inception, I was taking them for other problems. When the ear infection triggered the tinnitus it was in retrospective quite mild, but it kept worsening and in 2 years and 8 months it has become something horrible, super-loud at an unreal high pitch. I came off a first GABA drug and was put on a second one, but even under this second one I kept worsening at a stable dose.

I suspect the medications have played a role in my constant worsening but I have no certainty, doctors can't tell, it could also be an autoimmune disorder (but unlikely, I don't have the other signs of autoimmune disease), it could be a dormant virus (and they have no clear way to detect it they say if it is that, but they don't believe it is), it could be a spiral of stress (this is their favourite when they don't know what to do next), I don't know what has happened to me to destroy my life, the ear infection tinnitus was tolerable but this monster I have now is impossible.

I have tried several medications, when I have a little bit of peace if ever I will try to write a list, but really this beast does not yield to anything, that's why I suspect the medications. It is also at a level of distress that seems impossible for a natural ear illness, it is like an Akathisia of the auditory system, so I suspect the medications. I can only try to get off and see if in time I improve, but I'm so ill that I don't know if I'll make it to taper off, I'll lose the little sleep I have and the tinnitus could become completely unbearable. The evidence we have is purely anecdotal, some people stabilize on relatively large doses of Clonazepam plus in some cases Gabapentin and are able to live, needing to updose a few times possibly, others get bad reactions and have to wean off and then their tinnitus spikes and later subsides, others wean off without problems, others wean off but their tinnitus sticks. It's a giant crapshoot and again doctors don't help.

The level of uncertainty, second-guessing, suffering, loneliness and desperation this condition triggers is unreal.

 

You are very coherent - incredibly so for someone that is going through what you are.

What are you taking at the moment, if you don't mind me asking?

I presume you have had Pregabalin and Gabapentin and have tried those antidepressants mentioned here as helping in some cases: Mirtazapine, Amitriptyline...

What about benzos? Do you take any of them right now? And have you ever taken larger doses of them and seen any improvement?

You are spot on there. Second-guessing, thinking back over the past, self-doubting, blaming. It's hard to try to move on in any meaningful way with so many questions and suffering. As mentioned, you are a huge help on here and a source of inspiration for fellow sufferers. We are with you..

 

Indeed I was on Pregabalin, discontinuing it was hell. Later I was put on Clonazepam, and I'm still stuck with that, worsening at constant dose. I could increase the dose in the hope to stabilize because a taper seems impossible in this agony.

I tried SSRI (but I react poorly and serotonergic drugs are risky), Valdoxan, Quetiapine, Mirtazapine (it makes me sleep but leaves me very depressed in the morning), Amitriptyline (doesn't help), a ton of supplements, Lenire, vagus nerve stimulation/Parasym, tinnitus osteopathy, tinnitus acupuncture, oral steroids, intratympanic steroids, Betahistine, antiviral medication, hearing aids, mindfulness for tinnitus, hypnosis... nothing worked. Not sure what I'm left with but I don't have the strength to pursue anything else. I'm out of gas and suffering too much.

 

You certainly have tried a lot of different things. Did you try Gabapentin (with or without the Clonazepam)?

Melatonin to help with sleep (I am guessing the trade off was not worth it with the Mirtazapine)?

What about high doses of Benzos to shock/interfere with it for short-ish term? I think taking Valium helped me in the psych clinic. Was frequent at first - 4 times per day - 25-30 mg (2.5-3 mg Clonazepam?). And Alprazolam?

 

I didn't try Gabapentin as it is a weaker version of Pregabalin but given the desperation I could try to add it to Clonazepam. I do use Melatonin to sleep, it helps a little.

I haven't tried that dose of benzos, I would need a doctor to approve them and it's not easy to find such doctors. Did you do that in a hospital only or were you allowed also later?

I haven't tried Alprazolam but doctors recommend Clonazepam for the longer half life.

 

Perhaps the Gabapentin-Clonazepam combination might do something.

The Valium I started in hospital and brought it down to 2 mg before leaving BUT the psych told me after that my anxiety levels/burden were so high/heavy that I should be taking 10 mg at night and when needed. I got to know another patient with bipolar disorder and they started her on 10 mg at night when she left, and, eventually put it up to 20 mg 3x per day when she wasn't well.

Where are you Chinmoku? I am wondering about certain hospitals or clinics where you could possibly try a different approach. And how are your anxiety levels at present?

 

Interesting that they allow for some discretion in deciding the dosage. I'm in London, my anxiety would be ok if not for the tinnitus, it's the unbearable electric Akathisia-like noise that triggers a cascade of problems and reactions in my nervous system, including anxiety. Eye floaters and visual snow don't help but I can live with those, it's the tinnitus that is impossible. This manifests physically as tremors, sometimes stomach pain (rarely so far) and occasionally tachycardia.
I have been to a number of private and public hospitals, really I have talked to ENT/Vestibular specialists/neuro-otologists and neurologists who are at the top of their game in the UK, very good publications and track record, they are also good people, except they are powerless on tinnitus, or at least on the type of tinnitus I have. At some point they give up on you and they send you to a psychiatrist, which is when you know you are toasted. Also, none of them want to admit that medications might trigger or worsen tinnitus. I kind of stopped seeing doctors, I know I shouldn't but I don't have the energy to look for specialists anymore. Once a lady who cleaned my ears very carefully and who has been in the game a long time told me to give up on finding a doctor who can help me, because there are none. I have been told that, basically, beyond what I already did there is nothing they can do except wait and hope for a reversion at some point. My last chance to survive is to go on a massive dose of Benzos plus Gabapentin and see what happens, to see if this crazy trend reverts, but it's something I don't like. On the other hand I'm seeing no alternatives.

Do you have doctors or specialists who you would recommend, @Uklawyer? What I would need is a facility that thinks at 360 degrees and tried to finally find out the cause for my continued worsening. They would need to test for presence of dormant viruses, test for autoimmune conditions, inflammation, investigate the medication impact, and more generally try to find out what's going on. MRIs and CT scans by the best specialists showed nothing, my working hypothesis is phantom cochlea started by a cold+virus and then worsening brought about by meds that I cannot stop, but I'm not a doctor and this is by exclusion.

I wish there were a medication that _clearly_ helped. Valdoxan/Agomelatine was useless to me, Benzos I'm not sure, they calm me down but don't lower the volume at all, so it might even be that if I could come off and stay off the tinnitus would calm down in time, but I don't know how to do that, I'm suffering too much. Probably it's time to try a more substantial dose and see what happens, I can't go on otherwise.

Things I haven't tried yet include (some medications are risky):

rTMS
rTCS
Laser
Acamprosate
Keppra
Kava Kava
LDN
Acamprosate
Memantine
Nemerexane
Tegretol
Trileptal
Stem cells
Long fasts (I tried a 3 days water fast and intermittent fasting for 3 months but with no benefit)
Diets (except for a hydrops diet which I tried for 3 weeks without results)

But at this point I'm not even sure I want to try, nothing I tried helped, nothing. Probably I should get off Benzos to try that but who knows if that will ever happen.

Let me know what you have tried and if you have any doctors or hospitals you could recommend. Unfortunately I have to say that the private "Tinnitus Clinic" in London is pretty useless for complicated cases. If your tinnitus is a single tone and can be bounded clearly on both sides they can try acoustic neuromodulation, that worked for some of their patients. If not, they try to sell you hearing aids or habituation therapies, which in my case don't work. So it's not really a tinnitus clinic, it's more like a glorified audiologist place, a true tinnitus clinic should be open to all venues of investigations and have all types of doctors who talk to each other. I don't know if there exists a place like that in the world, probably not. The closest could be Brai3n in Belgium, where they approach the problem with pharmacology and neuromodulation, TMS, TCS, brain scans, neurofeedback, but is still partial compared to an ideal tinnitus clinic.

What a mess of a condition. Really, one of the worst when severe.

 

Are all of the audiometry tests here familiar to you?

https://vestibular.org/article/diagnosis-treatment/diagnosis/

I was recommended by a doctor who had had tinnitus to speak with Dr Saeed at this place:

http://www.londonearclinic.co.uk/about/

I had a video appointment with him. I mentioned ANC headphones, SSRIs and stress with noise (plus existing anxiety and ME/CFS) - and he said that nothing I said jumped out at him as a cause for tinnitus/worsening thereof. He ordered an MRI - which I have still not done. The meeting did not inspire me.

He did mention sending me to another doctor in London. I vaguely remember the name "Laurence" and UCL - so have just had a look on Google - but found a psychologist:

https://www.uclh.nhs.uk/our-services/find-consultant/dr-laurence-mckenna

I am not certain if this is the person he mentioned. The guy looks interesting, but from a psychology perspective.

Have you looked at Jastreboff at UCL or the Tinnitus and Hyperacusis Centre?

https://www.tinnitus-pjj.com/

http://www.tinnitus.org/

 

Professor Saeed is a very respected and leading neuro-otologist, I think he was the president of the British Society of Neuro-Otology or something of sorts. He came recommended to me by a forum member.

However, the appointment was rather uneventful, and he confirmed what most previous doctors had told me. He discounted the role of medication in this, and basically he explained that after the initial trauma the tinnitus moved to the brain, so it was a neurology/psychology problem now. Professor Saeed is a very experienced top surgeon and a good person, he really wants to help, but when it comes to tinnitus the science is what it is, so he doesn't do anything much different than other specialists.

I think you are referring to Dr. Lawrence McKenna. Every single ENT/vestibular specialist/neurologist/otologist whom I saw for this condition eventually referred me to Dr McKenna. This means they don't know how to help you except for referring you to a mental health professional, so they are basically giving up on you from a medical point of view. That is a very bad signal. Dr McKenna is again at the top of his field, i.e. psychology of tinnitus, he co-authored papers on clinical trials for mindfulness applied to tinnitus, he is a psychologist (PhD in psychology of tinnitus) with a lot of years of experience, but what he will offer is psychotherapy and mindfulness oriented to tinnitus. He has tinnitus himself, although I suspect not of the severe variety. He is very kind and understanding, again a good and well-meaning person, but again I think it's mostly the mild/moderate cases who benefit from his approaches, except for the rare severe exception.

Jastrebroff I haven't consulted but I had tried TRT with hearing aids incorporating white noise generators from a top London hospital, but this ended up worsening my tinnitus. So I'm not keen on trying him. He must also have retired by now? I don't think TRT works for everyone and it definitely didn't work for me.

There are many other specialists I consulted, some authored papers and books on tinnitus, but no one could help me and all they would do in the end was referring me to a psychiatrist.

Finally one comment: tinnitus is partly a neurology problem. Most neuro-otologist are actually otologists with a little neurology training thrown in. I think we would be better off with some proper neurologist who is specialized in ears and vestibular system. There are only a few in London and in the UK more generally but again, giving that the science is missing, they may end up giving you again the same comments and recommendations.

 

I can't believe my tinnitus has been with me for 20 years and nothing has changed. It is so bloody depressing to think people are still referring people to psychiatrists for tinnitus treatment.

You are spot on about neuro-otologists. They have very little training in neurology. Having said that though, I have seen several neurologists that have been clueless when it comes to tinnitus.

Let's hope somebody out there has the answers and that it does not take another 20 years!

 

I was referring to the London Tinnitus and Hyperacusis Centre in London which he was involved in setting up I believe (see the links above) - but it is TRT that they do in any event.

What about neuropsychiatrists?

 

We have some similarities, as I think you have mentioned in the past.

I edited the list you gave to only include things I DID try with no success before retreating into my current drug stack:

Nothing there was helpful to me... tried a lot of other shit too!

 

I hope so, because I won't survive 20 years for sure.

How are you, Star? Please tell me your tinnitus has improved since coming off Clonazepam. I really hope so. It has been a while now.

 

I visited the London Tinnitus and Hyperacusis centre when I had balance problems, they also do vestibular therapy. The resident ENT there used to be Don McFerran, another type of ENT along the line of those I described above. Well-meaning, with a lot of experience in tinnitus, worked with McKenna, but again powerless against this madness. They do offer TRT but it does not work for me. However you could try it, perhaps it works for you. Note that you could be able to access TRT through the NHS and you could save a lot of funds that you could try with other therapies. I think any audiology department in the UK in a good hospital might give you hearing aids (especially if you also have hearing loss) to help with your tinnitus.

Another name you may hear is David Baguley. He is considered the main authority on tinnitus in the UK. He worked with McFerran and McKenna, and other authors. He is based in Nottingham. Unfortunately, he has nothing to offer either apart from the usual palliative therapies. In fact Baguley and McFerran co-authored a paper entitled Why is there no cure for tinnitus?.

I think that tells you a lot of what these well meaning doctors can actually do for severe cases. I was thinking of consulting them but I stopped when I realized they could do nothing different than the specialists I had already seen.

I'm sorry if this all sounds so negative, man. I tried so many things. I feel defeated. The science simply isn't there for my type of tinnitus and I don't know how I'll go on. But this does not have to be the case for you. Perhaps one of these interventions will work in your case, I really hope so.

P.S. Neuropsychiatrists, I know a couple and they didn't help much beyond what a normal psychiatrist would do. Again, tinnitus is so elusive and mysterious that they go with the usual trial and error prescription process if you are lucky, otherwise they refer you directly for CBT or mindfulness, not necessarily a bad thing but it didn't help me.

 

I have some tiny spark of hope in the fact that Dr. Shore's device helped you. I tried Lenire but it did nothing, or slightly worsened my symptoms (hard to tell given my naturally worsening pattern). If only Susan Shore didn't take forever. I had a very good feeling for Minnesota, but Dr. Lim joined Neuromod and that was the end of it

 

Thank you very much for the insight and suggestions, Chinmoku. You still work, don't you? Amazing. You are truly helpful and deserve to find your peace within all this madness - I sincerely hope you do.

I saw something recently on a French study of sound therapy on tinnitus with positive results. Something to do with proteins - based on a theory that dates back a while. Does that sound familiar to you at all?

 

I worked several years ago with a couple of very good neuropsychiatrists, but once again they understood very little about tinnitus. Their clinical expertise was in Dementia though. If I can remember and get that condition at least I will know who to call

 

I am nearly 19 months off Clonazepam and I am still having windows and waves. The tinnitus does lower for about 15 days of every month and that gives me a break to recharge before the onslaught returns.

I have improved from the acute stage but I was expecting to feel much better than where I am at right now, especially after all this time off. I am aware though that it can take many years to heal from benzo damage

I am sorry to hear you are still going through a rough time

 

I'm sorry it hasn't improved more, but I'm glad some improvement has come. Your experience seems similar to that of @My T Sucks, I wonder how he is doing these days. I thinks that the windows should get slowly wider and it will take time but you will heal in the end. Ears heal quite slowly.

P.S. What is the level of tinnitus on the good days?

 

Some days I can forget about my tinnitus for several hours as it goes not only to a lower level, but to a tone I seem to be able to cope with better.

Some days it is still much louder and I cope ok because the tone is not a shriek. Then for at least 10 days a month it is pure torture. The ringing is so loud, I can only describe it as a high pitched noise that does not let up. Then I get repeated ear clicking in my left ear at the same time.

On my good days I have travelled by plane interstate for short breaks and have managed to enjoy myself. So I am grateful things have improved compared to the last twelve month period.

However, when the noise ramps up, it is a totally different story, survival mode is switched back on real fast.

 

I'm in survival mode 24/7, except when I sleep. I think it's disappointing for you that after 19 months you are still having weeks of survival mode, but it's definitely progress, if slow. You are on the right path and knowing this is of enormous importance with this condition. If you could fly and have normal time with family that is a huge progress. I am only worsening, and I'm already in survival mode, so I don't know what will happen to me, I never get a break. God.

 

No, I haven't seen this French study. I should check it but the agony is so bad that I struggle to do anything these days. Even posting here has become so hard.

I'm hanging to my job by a thread but I'm not employed in full capacity, I'm in partial disability. I have to provide for my kids and handle the situation with my wife leaving. I'm holding up despite the 24/7 torture for now but I don't know how much longer.

Thank you for your kind words, I really hope you find a way out of this mess.

 

I'll see if I can summarise it at some stage for you.

You are a real man. Honourable. Are you saying that your wife has recently left you because of this? And does she work/support your kids? (Hope you don't mind me asking.)

 

Hi @Chinmoku -- I've been researching akathisia, so have been running across some of your posts where you mentioned it. Since you've tried so many things, and seem to be open to just about anything that might help your situation, I thought I'd post a link to one of the best YouTube videos I've run across.

How I Reversed Chronic Constipation Using Coffee Enemas! | SIBO IBS-C Gallstones

After watching it, I've come to look at coffee beans as a medicinal treatment. The video explains how when it travels up the hepatic portal vein system from the colon to the liver, it cleanses the liver, stimulates the vagus nerve, and also stimulates large increases in glutathione. Glutathione is the body's master antioxidant, which detoxifies the body.

But it apparently also has an amazing ability to balance all the neurotransmitters in the body, I think especially dopamine.

@Jazzer, I do coffee enemas regularly, and am so glad I was able to get past my initial extreme hesitancy. In my opinion, it's one of the most effective therapies a person can do, and has done wonders for me in helping me keep a sense of equanimity during times of hardship or crisis.

BTW, an article in the 1922 New England Journal of Medicine showed that coffee enemas were very effective in treating depression. Over a hundred years ago! Also, IMHO, if people knew how to do a coffee enema in times of health crises, COVID-19 would become much less of a concern. So much of the problem with COVID-19 is the huge amount of toxicity it generates. Coffee enemas dramatically increase the body's most important detoxifying antioxidant.

Take care...