Discussion in 'Support' started by Leah, May 23, 2014.
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To tune it out and listen to the T I will scream!!
People tell me to just ignore it all that time and every time I want to slap them in the mouth. It's an insult and just shows the lack of sympathy. I've been told by ENTs, Neurologists, General Physicians, name it.
Amen at doc appt now, almost like it is my fault
I heared already so many stupid suggestions, I cannot count them all.
The best one is: It is just a noise, so what?
Therefore I don't speak with doctors about T anymore.
Only people here understand what we are going through.
Luckily my wife, family and friends give me all support I could think of.
But at the end, I have to go through this myself.
Glad you have lots of support
It's okay. The ENT office I routinely visit has a medical assistant who told me tinnitus is like cancer and they'll be trying to cure it for over a hundred years so I better just deal with it. Her words not mine. I told her that she was not only ill informed, but ignorant and disrespectful and a horrible medical professional.
Oh, good for you!! I know it has been said over and over but I have learned more from this site.
I have been so many good doctors but always the result is the same, don't listen to it, occupy yourself on an on.
Just had neurologist recommend Cymbalta, side effects can be trouble with ears..that frustrates me..
Did you ask about medicines that have implications either positive or negative with regard to tinnitus and any treatments they personally have affiliation with? I'm scheduled to visit UT Dallas at The Callier Center to explore more options. I'm fed up with the lack of answers and am becoming compelled to force the answers out of people.
I live in a suburb of Cleveland and have been going to specialists there.
Seems different doctors like to use different meds. I tried Neurotin and had horrible headaches,
waiting to hear back from the doctor about a different med. Been two days. People with T are not a priority.
What have you done son far? I am taking Potassium and Magnesium as supplements. Thinking of adding
Zinc and B12. Did acupuncture, PT on the neck and hearing aids.whew...
That's insanely unprofessional of her. Is she following the research?
No of course not. I live in Tulsa, Oklahoma where apart from Cancer research, there isn't much going on medically. She's nothing more than a gatekeeper between myself and the Neurotologist I see. He is supposedly some super expert, but he told me "nothing to be done. I have tinnitus and I wish I could help, but I can't." No options, no advice, no anything. I called about the fluttering (distortion) I'm experiencing and I was told that tinnitus is currently without a cure and I replied "that was not even what my questions were directed toward." I was then told "You have to make an appointment if you want to speak with the doctor." I was basically given a big fuck you.
Well, what can I say, some doctors are just ignorant and lazy. Like their title somehow justify to be condemning. They sometimes forget that they are actually working for you not vice versa.
I can almost understand the doctor's frustration. Some place on this board it was said that doctor's like to help and heal. In the case of T they can not. I had an ENT that was like your nurse, I left feeling like a nut job in tears. At least discuss with us
what are some "options". Once me husband heard "learn to live it" it has become his mantra.
You're absolutely right. I am of the opinion that when you stop being invested in what you do and begin to think about stability, it's time to change fields. That rampant stagnation is the professional plague of ENTs.
I feel no remorse towards ENTs. They have shown me no remorse or understanding of my frustration nor do they seem inclined to care. I can feel them eager to get out of the room with me because I am not the typical patient. I won't take things lying down and I am openly emotional. I am also intelligent and bring valid questions to the table and very rarely do I receive any sort of coherent response. I am no expert, but I find myself utterly shocked by the lack of awareness of those who are expected to help me
I refuse to believe there is no cure. In fact, science has encroached on the topic heavily in just a few years. The timeline is not what I desire, so I refuse to settle. The more effort and push into the field and anger and drive to cure it will cure it. This lackluster breath of life these people put into being invested in and understanding the causal markets of tinnitus etc are the very reason no cure exists yet.
I've done oral b-12, Ativan, and intratympanic injections. I am soon to try a specialized form of TRT but I won't have the details until after my appointment with Dr. Shawna Jackson at UT Dallas
Good luck, keep us posted.
Will do appointment is on June 6th. I'm not a religious person, but I am praying for this one.
Yes. Many doctors would like to help. But unfortunately they cannot.
I had several sessions with a doc here in Germany also suffering from T. She accepted it after some months and learned to live with it. But I guess it is not as loud as mine. But who knows? At the end she really tried helping me. Nevertheless, she couldn't take anxiety and depression away from me. I think I am a little bit better than months ago. But still struggling with this bastard in my head.
I hope your husband supports you as much as possible.
All the best for you.
I pray every day for help with my T , I get it!
I appreciate your support. There is a cycle isn't there, panic, anxiety depression. I would be lost without you kind people on this board.
Yes. I never knew panic, anxiety or depression. But T brought it all to me.
People do not understand why I am anxious. Because I have everything, health, family, kids, job, hobbies, money...
They do not understand that I am anxious about loosing my job, loosing my family, living with T until the end of my life.
As I have learned, those are distorted thoughts. So I challenge them with the reality.
Nevertheless if you need to concentrate for your job and you are highly tensed or anxious, it is not so easy.
I even don't know if the T brought the depression or a depression brought the T. So I am going in circles every day trying to find out if I need to change something in my life.
At the end, I hope for habituation and try to get and give all support here as good as possible.
Stay strong and greetings from a sunny Germany today.
I hear you on that one. Just had an appointment with a psychiatrist and wanted him to review the sleep meds I was taking since I only had my family doctor working on this with me. I told him I had T and couldn't sleep without meds, how it all started, etc. He said I don't treat sleep disturbances and who told you to come here. I was put on the defensive immediately. He did not even make eye contact with me and kept looking at the wall behind me. I wanted to turn around and see what was there. His only recommendation was to see a neurologist. I knew he was a useless, uncaring doctor so I just gave general answers and could not wait to leave. I am lucky I was 6 months in and a lot stronger, otherwise I would have just lost it.
Oh and the first doctor I saw at the onset when I said I haven't hardly slept in a month and needed something to sleep said, "Well, you remember Michael Jackson, don't you?"
Could we ALL be wrong? So many of us have had to deal with professionals who treat us so badly.
Best of luck to everyone.
Hi guys, I'm new on the forum but I would like to take this a step further!!!
The very first ENT visit went like this:
I was sitting in his office, crying my eyes out, he looked at me and said: It will never go away and as a matter of fact some people even commit suicide!!!
That line stayed with me ever since and is the main reason I'm still struggling nearly 3 years in.
valeri my mouth dropped open when I read your post. Not only are we dealing with this condition but can't get anyone to take us seriously.
Wow that is seriously really cold! ! All of us on this board have a stong mind it might get a little weak at times but we are survivors.
valeri, You have some really stupid ENTs out there. Jewell is right, we are all survivors and never should think this will last forever because it will not. Look where technology has gone in the past 5 years.. Everything it moving faster.
Yes, I'll also send some good thoughts your way! I've read how much you're suffering. It's ridiculous that tinnitus research does not get the funding it deserves. And with our current congress, who knows how much will be funded for next year.
Please let us know about your UT Dallas meeting.