A Little Perspective

Or there is no cure because the doctors don't know anything about tinnitus ? And have been ignorant for so long because it's sth invisible and hard to measure? They would know more if they listened to their patients better.

Well, I guess I was just trying to say for people with really severe condition the perspective is just not an option at all. But I'm sure they still simply hope to be cured one day soon. Hope and optimism are not the same things. And all the others with mild version will obviously very fast come to your conclusion by themselves. I myself try the perspective and it works..for a short while. Then I'm still so selfishly greedy for being healthy and normal and not living in fear of my condition getting worse in time that the perspective somewhat fades..

 

I have T, H, RT, and Chronic pain. 2 years.

Legend <------

 

And that's why we get nowhere. They don't perceive our situation because we don't demonstrate it to them when we still seek to at least present our own dignity. They then assume its not that bad, breathe a sigh of relief, send you out to the desk to pay the full fee while not letting the door hit you on the way out.

 

"A little perspective"... hmmm... reminds me of the "sense of proportion" favoured by Doctors Holmes and Bradshaw in Virginia Woolf's 'Mrs Dalloway' (great novel!).

While recommending this seems a genuine effort to help, it can come across as a bit lacking in empathy. If someone was diagnosed with diabetes you probably would not say "Cheer up, it isn't cancer." Maybe the perception that tinnitus is minor is just a prejudice that is better not perpetuated.

And of course there isn't really an absolute scale of good/bad things when it comes to human beings. We have this weird capacity called subjectivity that messes that up. Getting a phone call from an old friend might make one person as happy as another becomes on winning the lottery. Or losing silence may hit one person as hard as losing both legs hits another. No right or wrong there really, just human beings.

I agree... if it helps use it. But (anger with doctors to one side) suggestions are not just inherently neutral. Like most communications they carry baggage which is often unintended. This thread probably testifies to that. Maybe being able to help means being aware of this possible baggage and how not to let it sabotage an intervention.

Welcome to Tinnitus Talk @Dr. Ancill.

 

Yeah, I might have gone to far and give you a false image of my happy go lucky attitude at the doctor's office. It's not this of course but I mean they don't live with me and have not seen my crying in bed for hours.

 

In grown hairs maybe.

I know there are a lot of uncurable diseases but tinnitus is in a really bad spot now.

Are Crohn's disease patients sent home and are basically told fuck off and that they should work on their ''reaction'' after diagnosis? Are ALS sufferers sent home and told to wait to die since there is no cure?

I don't think so.

 

I was so concerned about what people are saying about the alleged callousness of doctors with regards to tinnitus that I contact 6 GPS and 4 ENTs that I know and asked them what they said to patients who presented with tinnitus for the first time. 3 of the GPs said they would refer to an ENT. The other three said that they would examine the patient, get an audiology consult then refer to a ENT. Two of the GPS said that they would assess the patient's emotional state. Of the ENT specialists, all 4 said that they need an audiology test, would examine the patient for treatable causes, assess (or refer) for emotional problems and all knew about sound retraining therapy and had referred patients for psychological or psychiatric help.

There is never any excuse for a doctor to tell a patient to go home and just suffer....I will now ask my patients with tinnitus (currently about 150) what their experiences were and will report back to this forum. Doctors are getting a bad rap on this forum and we need to establish if this behavior is as common as people say.

 

I was offered as much for my T as anyone would have offered me for other conditions that are without a cure. I have another "incurable" condition. I was given meds to manage the symptoms, but that's the most anyone could do. The same went for my T, I was given meds to help manage the symptoms (sleeplessness, anxiety etc.) I'll admit there was more sympathy from some doctors, but the end result in actual treatment level was the same once I found a good doctor. People with T tend to not want to go to psychiatrists from what I've seen here - but mine helped me to sleep, manage anxiety and was incredibly kind, sympathetic and listened to me. Honestly, he did more than an ENT, because he could do more given the circumstances, that doesn't mean my T is a "psychological condition." ENTs are perhaps not really the right people to see for T once you rule out a cause like a tumor etc.

@Dr. Ancill posted, if you read it again, a very nice post - he was just trying to offer help in his own way. He's new here and answering questions based on his knowledge and experience. Perhaps not everyone here will find his advice helpful, but we also have to remember that doctors are human beings. I think sometimes we hold the doctors here to an unfair standard, especially given they're here to help and learn. From his experience and perspective - having perspective has helped him, he also said he is having a hard time, which no one mentioned. So, as we would say to other non-dr. members, I'm sorry you're having a hard time, Dr. Ancill and we're glad you're here! I can imagine that in the process of actually experiencing and treating patients with other conditions, that's probably a very different experience of "perspective" than for a regular person just thinking about other conditions comparatively.

This is a support forum - Can't we be a little more kind/receptive to the support that people offer, rather than calling things "steaming piles of bullshit," or immediately attacking just because we disagree with someone's perspective. It just puts people on the defensive. We could learn a lot more from one another with respectful discourse and empathy. It seems like every thread around here has gotten more combative lately. Let's be nice even if we disagree, this should be a relatively peaceful place, not somewhere that raises everyone's blood pressure

 

The problem is when you go back to the doctor with audiological results in hand. If results come back normal they'll say sorry I can't do anything I don't know what's causing your tinnitus (hint: it may very well still be hearing damage). If you have hearing loss they'll say sorry you have hearing loss try these hearing aids maybe.

 

awbw8 Agreed . We are all in the same leaky boat

 

No matter how sympathetic a doctor is, tinnitus is incurable and the end result between a good doc and a bad one is the same.

Since everyone here has T and it has impacted us in a major way, we tend to see the world through the lens of our tinnitus. I'd be willing to bet that the majority of us hardly gave it a thought before we had it. So it's not surprise that doctors who don't have it don't think much of it.

It would be nice if docs would be more willing to experiment with drugs. But other than that, I'm not sure what else they could offer.

 

1. There is big difference between bad and good doctor. Bad wont event tell you about TRT, good will tell you where to go and what tests to do and who to contact if you need professional help. Its different to hear you cant do nothing about it and to know that there are some partial relief methods to some.

2. Its ENT job to know and understand tinnitus. I hardly think that good oncologist doesnt care about one specific type of cancer just because its harder to fight through than other he diagnoses and treats. Heck there is even palliative care for "no chance to get rid of cancer" patients.

3. So if you experiment with RTG and then you develop kidney stones or other serious side effects who will pay for your treatment? NHS. They might figure out who gave you rtg and remove doctors privilege to treat others for malpractice. Im not surprised most doctors dont want to risk just because one patient claim that someone on internet claims it helped him. Sorry it just doesnt make sense to them - they have to go through acceptable and reasonable options instead of allowing patient to do harm to himself (even though RTG might have positive effect on T its pretty much nuclear bomb on your body).

 

1. While those are good points, to many on these forums, hearing about habituation protocols would just serve to make them angrier. But even still, the end result is they have tinnitus no matter how compassionate the doctor is.

2. Understood. But when you're at a dead end, you're at a dead end. It's kind of like being stuck on a math problem you just can't figure out. After a while, you just run out of ideas and simply cannot figure out the next step.

3. I completely understand. I've also stated before why I don't necessarily blame doctors for being wary about prescribing it. That said, I am a firm believer that people should be educated about potential hazards and be the one to determine their own risks.

 

My first ENT patted my hand and said, 'There, there now, you'll learn to live with it as there is no cure or even one on the horizon." He went on to add that it is probably something that I am doing that caused my T--along with a very minute HF hearing loss related to aging." Like it was my fault. He prescribed a week's worth of .25 xanax because I was visibly upset and anxious-- but told me he wouldn't be 'my xanax man'. What an idiot! Made me feel like a drug seeker. I have unilateral T and he didn't even tell me I should get an MRI. I spent a month trying to 'bear up' to the T but after a month of almost no sleep, 10 lbs. weight loss and anxiety through the roof, I went to my Primary Care Physician. He did full labs to test me for any disease that could be a cause--diabetes, high blood pressure, etc. He prescibed a week's worth of sleeping meds and a regular prescription for Xanax .50. He also recommended I see another ENT and go to Behavioral Health for CBT. My PCP is a life saver--a very compassionate and empathetic doctor. I see him every four months now as he monitors my medication. Because I have been anxiety prone most of my life, he says I may need to take xanax or something like it for the rest of my life. He also explained that if I stick with the therapeutic low dose that I don't have to worry about addiction. I'm also 63 years old now--so I wasn't really worried. Xanax helps me feel normal and it helped with my habituating my reaction to T. It also helps me sleep 7-8 hours a night--sometimes 9 hours on weekend.

My second ENT had his audiologist do the tests again--explained that the hearing loss in my left ear was very slight. He also said that the stress I was under (almost lost my spouse and did lose our business in a hurricane) could possibly contribute to it. He explained that T is neurological and that stress may cause certain chemicals in our brains to react as they shouldn't, thereby creating the perfect storm with age related hearing loss, for T. He really couldn't help me but he at least explained it all and told me that he has T patients that lead normal lives. He said if I didn't habituate on my own that I could try TRT or some other sound therapy. He ordered an MRI w/ and w/o contrast and put my fears of a tumor to rest.

The CBT helped me enormously--especially the challenging my thinking and exposure parts of treatment. It helped me tame my reaction but that only really helps one's anxiety--not one's T. I may be habituating my reaction but I still hear my T almost over anything. I do have quiet days though, so I am grateful for that. I know some here never get a break and I don't think putting it in perspective helps when one has severe tinnitus.

I work in healthcare--and I know my two ENT experiences are polar--but I could've walked out of the first office and went off and blown my head off. I felt that bad...good thing was that we don't have any guns. The posters here helped me a lot.

 

Don't you think there is a huge difference between the obligation of an average healthy person to wonder about T and of a doctor, namely ENT , to do so? I really couldn't agree less. It's their job, they chose it. They are even paid to wonder about treating patients with T among others, even if we assume they are so unsympathetic for many.

Even if the final result is to be the same, the way we come to it counts a lot for the patient's psyche. I'm convinced one's attitude will be different if he feels he was treated seriously and that whatever could be done, has been done but there's just nothing curable about it from the situation when he just hears there's nothing to be done because he has some hearing loss or because there's no apparent reason for such symptoms. How many of us here haven't even been tested for anything more than hearing loss or MRI ? Or weren't even sent to the specialist ? It's enough to read a little on the net to know there may be so many other reasons and they are often overlooked. I could give examples here but it's a bit off the main topic.

@Dr Ancill, it would take at least a 1000 of doctors to question in order for the study to be representative..And from all over the world as there are people from every continent here. But it's a good iniciative.

 

First ENT said to me:
It will never go away and as a matter of fact some people commit suicide!!!

And he could clearly see my emotional state as I was sitting in his office crying my eyes out.

Not saying all Drs are assholes but this one certainly is

 

I think this is just, like, a terrible idea, man.

(emphasis added)

 

I totally hear what you're saying and you're right, ENTs should take more of an interest. I guess it's just like I was saying before, when you don't know what to do, then you don't know what to do. Remember, we're asking our doctors to cure something that is uncurable. It would be like going up a math professor and asking him to solve a math problem that no one thus far has been able to solve. Eventually some day, hopefully, it will happen. But it just simply hasn't yet. To top it off, even though tinnitus is generally perceived in the ears, it turns out that it might not even be an ear issue at all, so going to an ENT could be like barking up the wrong tree.

 

My ENT gave my some sort of Benzo and added that I needed to promise I would not take all of them and try to kill myself, "that happens" he added. Wanker.
Needless to say I never went and got that poison.

My friend just got T , went to a doctor , he gave him Benzos.

Almost like Dr´s do not know how fatally poisonous that shit is to your ears.

Btw, we all realise that dr´s cannot "do" anything, but being dismissive is just wrong.

 

"Oh there's no treatment for that.....you may have had a stroke....just see the girls at the desk before you go (to pay)"
"Its just the kind of thing that happens at your age"
"You need to see a psychologist to work out why you have good (better) days"
"Its just something we don't do well...(as the Consultant gets up and walks out before I've finished asking questions)"

I gave up after those four. I hope your people did a bit better. I've worked with Doctors all my working life, I've copped the abuse, the high-handedness, had the instruments/gloves thrown at me or on the floor in front of me, been ignored, had my suggestions claimed as their own when it suited, listened while they brag about their wealth, trips, cars etc....I know Doctors, and when I finally needed them to be Doctors for me, well the Emperor was stark naked (X4) and couldn't care less. Most of us here know more about this than the average ENT, including options that just don't get raised, but they hold the power, and we know how Doctors love to share the power don't we.

 

This is what you should have added to original post to avoid misunderstandings. Original post seemed more like a default reponse for every patient.

Although I think that people with trivial T don't even need this obvious statement so I'm not sure where to use this "perspective" but good if you have found some use for it and it actually helps someone.

 

I wasn't classifying, I was generally saying that ppl with mild T don't necessary need the statement. The comment may have been a bit unrelated to the topic if it seemed like I was classifying something.

 

Why would you compare conditions. My uncle is disabled, I've never heard him say ' well it could be worse, I could have cancer' Equally I've never heard my best friend who has weeks to live because of cancer say 'well At leastI'm not disabled'. Saying we should count our blessings it isn't a worse condition is so futile, and totally dismisses the huge impact t has.

 

My two cents for this topic. When I got T, I went to the gates of hell and slowly returned back. I remember thinking that I would gladly choose pain for T. I have now had really bad nerve pain in my leg for a week, for which even strong painkillers don't work. I would now chose T over a chronic pain like this in a heartbeat.

 

Have you tried nortriptyline?

 

^ I tried yesterday Lyrica for the first time. I think it is a similar drug, also used for depression. It didn't take the pain away, but it made it a little bit 'softer' and also made me sleep better. However, I have felt 'slow' and weird today and a bit woozy at times. I hate the side effects of all drugs.

 

Do you know what caused your pain?

 

That is terrible. How on earth a doctor can even mention such thing to patients who are visibly broken mentally, to suggest T never going away and T patients may commit suicide. It is really unprofessional. My ENT is no better. He nailed the T coffin and uttered the 'death sentence' differently but produced the same result. He said the only way he could stop my ringing is to shoot me. That is almost like suggesting you to go home and blow your head off. There are good ENTs and there are bad ones in their capacity to deal with new T patients. These bad ones should be sent back to medical school to be retrained on proper counselling of their T patients and be more informed about other alternative treatment options.

Saying that, we shouldn't take our frustration out on the good doctor @Dr. Ancill as he is here trying to help by emphasizing the mental side of the T battle. Having T in the right perspective is not ruling out the immense sufferings of T nor saying there is no need for treatments. It is simply an approach to hopefully alleviate the mental sufferings by directing the brain to think a bit more positively about the situation. As different from most doctors out there, he and Dr. Nagler as well as Dr. Hubbard have bad T themselves and they know how hard T can be to a new sufferer. So I am sure the good doctor is not putting down the sufferings of severe T. He may be having one himself because even with his knowledge and experience of treating T patients himself, he still finds and admits openly here that it has been hard. He also pre-qualified his post that it is not intended to put down T sufferers.

Thank you Dr. Ancill for the effort to help us here and hope you stay around as we need more doctors like you who has battled with T and is willing to help others here with your precious time. God bless.

 

@MattK Most likely sciatica. I will go to an MRI next week, which will hopefully tell the diagnosis. Nerve pain is truly awful and for some it is chronic.

 

So you haven't tried it? A lot of people said it really helps with the pain.

"I have unexplained nerve pain for about two years..after trying so many pills I was at the end of my hope. All the pills either made me feel like a zombie or I gained weight. I tried 10 mg of Nortriptyline and it has given me back my life! I have been on them for around 3 months now and hardly any pain.

"I have been living with chronic back and hip pain for 12 years. I have had many surgeries with little to no relief of pain. After being in the pain management program at Kaiser for 2 months the doctor prescribed nortriptyline and within days I felt like a new person. Even just sitting doing nothing was painful and now I can do my daily household chores with little pain. Some things are still difficult but my daily life has improved substantially."

You name it I have every back problem known to man. I have been on this medicine for only a month. And I live a pain free life. I do have hyper activities but that's disappearing dry mouth and no appetite, and without eating as much my blood sugar level have been wonderful, (hypoglycemia). I love the way I feel , I have told many people, this is a miracle. "

I have been taking nortriptyline 10mg capsules (6 capsules for 60 mg) every night before I go to bed for over 3 months now. I was involved in a MVA collision by a drunk driver and I now suffer constant head pain. I now have Post Concussive Head Syndrome. I was taking narcotics constantly because of the head pain, I do not have migraines. I was able to be seen by a neurologist and because of the frustration and anger I had against the drunk driver, well the nortriptyline has help considerably in my head pain and also feeling depressed. The only side effect I am experiencing is dry mouth and sleeplessness. I am now taking it 2 to 3 hours before I go to sleep. There was a couple of times I missed the doses and the pain was there again."

"I am 40 year old woman and I was diagnosed with Fibromyalgia and Myofascial pain syndrome around 2 years ago and had symptoms for about 3 years before that. This medication was my doctor's first choice. I am a member of one of leading health care providers in CA, and she said that they have had much success prescribing this medication to patients with nerve pain disorders. This medicine made a considerable difference in my quality of life, improving my sleep, pain, stiffness, and tenderness. I take 30mg every evening before bed and make sure that I get about 8-9 hours sleep. I can always tell the next day if I've forgotten my dose. I plan on taking it for as long as it helps."