Thank you, I have tried so many things. I'm agonizing now, so it's very hard for me to write a coherent post.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.
You are very coherent - incredibly so for someone that is going through what you are.Thank you, I have tried so many things. I'm agonizing now, so it's very hard for me to write a coherent post.
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..The level of uncertainty, second-guessing, suffering, loneliness and desperation this condition triggers is unreal
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.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..
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.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?
Perhaps the Gabapentin-Clonazepam combination might do something.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.
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.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?
Are all of the audiometry tests here familiar to you?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.
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.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/
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.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 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.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.
What about neuropsychiatrists?You are spot on about neuro-otologists. They have very little training in neurology.
Nothing there was helpful to me... tried a lot of other shit too!Laser
Acamprosate
Kava Kava
LDN
Trileptal
Diets
I hope so, because I won't survive 20 years for sure.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 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.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?
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 itWe 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 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 callI 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?
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.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'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.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
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.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?
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.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.
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.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'll see if I can summarise it at some stage for you.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.
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.)I have to provide for my kids and handle the situation with my wife leaving.
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.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.