Suggestions Chapter 3: Visiting the Doctor

Suggestions for Chapter 3: Visiting the Doctor

Put all of your suggestions, comments and ideas in here and we'll update the guide as we go.

The guide can be found here Tinnitus Help: The Guide

The content that goes in the guide will be for everyone. Please consider that this is for people from many different cultures and belief systems - don't be offended if there are certain things that don't make it in

 

Going to see your doctor when you can hear sounds in your ears can be distressing as well as anxiety about what is happening to you.

Your doctor will talk to you about your sound and check your ears for wax or infection and talk to you how you are coping.

Your doctor will support you and keeping your doctor informed on how you are coping with tinnitus will help him or her decide what he can do for you.
Medication and counselling might be offered.
Together a plan of action can be taken and time given to see if your tinnitus will settle over time.

The main support your doctor can give is understanding and medication and by keeping him in the loop helps him decide what plan of action is needed.

 

I think knowing what the various levels of medical practice are capable of providing, and learning to tailor your expectations to that is important. A GP can only do so much, but is usually the first Port-of-Call (and really, they are a triage not an end-provider). Where I am most GPs know less than nothing, most have never heard the word Hyperacusis, and its not unusual for the patient to be the teacher (which in a way is how it should be in Medical practice generally). Don't be afraid to ask them to do some research of their own and to help be guides through the process. Don't accept "I don't know" as an answer unless its followed by "I'll find out". This goes double for expensive Specialists.

 

A list of the top five questions each new tinnitus person needs help with.

1. Severe Anxiety
2. Insomnia
3. Lack of cognitive thinking ability because of the screeching noise in the brain
4. Lack of energy both mentally and physical
5. Inability to concentrate

We walk into the doctor office. We are scared and look horrible. Shaking. Bags under the eyes. Feeling isolated and alone. We explain the noise in our brain. And the usual response is the deer in the headlight look from the doctor. Then we are given quick stupid replies. You will get used to it. And the doctor is in a rush to exit the room. Further giving the patient more isolation and feeling even less self-worth or more importantly - hope.

There are medications to help with anxiety. There should be no shame attached to this. There should be no horror stories of abuse that travel the internet. Medical supervision is necessary.

There are cognitive behavior therapists to help with dealing with anxiety.

One or both are needed before any further "therapies" can have any effect.

 

I live with tinnitus because of sudden sensorineural hearing loss. This suggestion has more to do with SSHL than tinnitus but it is a message that I strive to get across to people. I foolishly sought help from my GP for my hearing loss and my doctor misdiagnosed the loss as conductive instead of sensorineural. I asked her about seeing an ENT but she persuaded me to try Claritan and antihistamines for a month before she made the referral. I learned from the ENT that the standard treatment for SSHL is steroids and they need to be administered very soon after the hearing loss has occurred. Even when the steroid treatment is received right away, it is not guaranteed to help. The chances for effective steroid treatment a month later is too late.

 

Document everything! As best as you can remember, jot down the date, time, and context of what you did in the days leading up to and after the onset of T. Note down any other symptoms and/or conditions you have or have been experiencing with dates as you remember. Perhaps it was something you ate, a drug you took, or a loud venue you frequented.

In other words, tell a story to the doctor, don't just tell him/her what is wrong with you. The story will help your doctor determine the likely cause of your T. If your doctor interrupts you then you must insist that you finish the story. I would recommend condensing the story to about a minute as to not annoy the doctor into thinking that you're just rambling.

Practically, I would recommended the following separate documents:

1. Symptoms
   1. List your symptoms and when they started
   2. Be somewhat descriptive in what exactly the sensation/feeling is and where it is
2. Timeline of Events
   1. This is a detailed "story"
      
   2. If you can remember what happened on which day, use bullet points and indents to document what happened, how you were feeling, how you reacted, etc.
      
   3. Bold any event that you find to be critical (e.g. On May 3, I went out to a concert with friends and my ears were ringing when I went to sleep. However in the morning the ringing was still there). This will allow you to craft your 1 min. elevator speech later
3. Tests/Procedures Done So Far
   1. Ex: MRI (date) - came out normal
   2. Ex: Blood test (date) - all normal levels
      
   3. Ex: Lyme test (date) - negative
      
   4. Just bullet them
4. Suspicions as to Cause
   1. Here list your suspicions along with a sub-bullet for why you think it could be a cause (e.g. ototoxicity because I took 10 days of a known ototoxic antibiotic?, TMJ?, vestibular neuritis?, Meneire's?, etc.).
   2. This can be based on your own independent research, which you can take to the doc and have him/her confirm or deny.
5. Future Tests
   1. List tests that you think you might need and why (e.g. MRI to rule out acoustic neuroma, CT scan to test for any ossicle malformations, etc.)
6. Courses of Action
   1. Here you can speculate on what to do (e.g. wait it out for a week or so, continue on with certain medication, etc.)

I have found #1 and #3 to be particularly helpful with doctors because they can look over it before they come in and talk to you, giving you more time to go over your story (and detailed timeline if you have the time). From there the doc will examine you and give you a potential diagnosis. Finally, you can take out documents 4-5 and the doc can eliminate any other suspicions or refer you to another specialist if a suspicion is outside the doctor's expertise.

Finally, remember that YOU KNOW YOUR OWN BODY BETTER THAN ANYONE ELSE! Don't ever forget this. If you know that something is wrong, then don't take any statement from a medical professional to the tune of "there's nothing wrong with you, you're fine." Tell them that you know your body and that something just isn't right.

 

Important note on anxiety:
A doctor may offer you anti anxiety medications such as oxazepam. Since most of these are benzodiazepine's it would be best Not to take them as they may only help in the short term, but be detrimental in the long term.

@The Red Viper , that last post was so good I think it deserves special praise.

 

@Cityjohn, as was yours in the "What is Tinnitus" section: https://www.tinnitustalk.com/threads/chapter-2-what-is-tinnitus.15681/#post-185476

 

I have found doctors no help at all; one even seemed to find it amusing. Most just say there is nothing to be done. But I haven't really pushed them yet to see if there are any drug or other treatments available.

 

I did all of that Red Viper. Hyperacusis was worse for me than any tinnitus. It got me nowhere, in fact I was cut-off mid talk and told that unless my hearing was dropping in and out they weren't even interested in seeing me. This was at an establishment known as the "eye and ear" hospital which I drove 3000 km to attend. I'm not detracting from your Post, which is good, and its how I thought at the time I could clarify my situation and make it easier for them to assess me. They just simply didn't care and they focused completely on the tinnitus. If I could offer any advice too hyperacusics on this basis it would come down to one word. Lie. Deny you have tinnitus. Its a trigger word for medical practitioners and it shuts the door on you.

 

This is so true. I read this on this forum before my 3rd Dr visit. And I totally tried it, and I got further with him than the first two. I was like oh just a little hum doesn't bother me.

The 2nd ENT which I was all a mess in front of. He was like "I Deal With Ppl in Explosions".

 

Exactly my experience too. I went to great lengths and did what @The Red Viper did, printing out all my symptoms, putting all my scans on to memory sticks. Nobody was interested. As soon as they see Tinnitus their minds are made up.

 

Thanks, I am trying to visit an Tinnitus Clinic in Cleveland clinic. Struggling to set up an appointment. They have only one such clinic per month....whereby all specialists look at you... I feel there shoudl be more clinics like this.

TILL SO FAR I HAVE FOUND ONLY TWO DOCTORS WHO ARE INTERESTED IN HEARING WHAT HAS HAPPENED TO ME AND AGREED TO MY CASE-

(1) SUSAN SHORE, MICHIGAN UNIVERSITY She is researching on Tinnitus...and I wrote to her and she had provided her opinion on it for which I am thankful to her....I do think there is some weight in her opinion. But I did not find a good neurologist to help me with it.

(2) DR. ROY HAKALA Based out of Minnesota he treats TMJ and is an authority on it. He agreed most Tinnitus might have a TMJ connection. But I will need to travel and stay there for a week for them to evaluate me. I am planning to do this maybe next year if things dont seem to improve by then.

But yes, most doctors dont have any idea of whats happening and how to help.

Thanks for the post. Mita

 

Most docs have'nt a clue about tinnitus. They will give you antidepressants and sleeping pills which are useful to some extent but they and the rest of the medical profession are at a loss to deal with the causes. Many here have spent large sums of money and are no further on in their search for relief. In the end I believe given time the body can heal but getting through to that point will be a living hell.

 

@Paromita, I got my TMJD appliance or splint from Dr. Hakala in St. Paul.