How Do You Deal with Your Progress with Medical Advice and Treatment?

Hello there! Feel free to skip to the bottom if you want to look at the questions.

I've developed T approximately 2 months ago, and right now I would describe its characteristics as the ultra high pitched dentist drill noise that changes between many different pitches/frequencies and does not remain a constant noise. I do experience nausea with this when it gets intense, not really any dizziness or loss of balance or something meniere's related. I do experience headaches occasionally but this may not be related. I have been told my tinnitus may be due to an infection, but I also believe it could have been ototoxic in nature.

Over the past 2 months I have been to the ENT where he prescribed me a course of 60mg a day for 1 week prednisone, then a week taper. The prednisone I think maybe did more harm than good, and under it I had severe reactions that felt like I was on methamphetamine or something of the sort - I went to the ER for a what they told me was a panic attack as well near the end of the taper. Very scary experience but I powered through it.
The blessing of prednisone was that for about 2 days after the course my T switched to the outside ears and became one tone (very loud) but it was such incredible relief from the inner head drill changing noises that I would trade my legs to have this type of T for the rest of my life. It was possible to focus and function so much better with a constant noise of T. Unfortunately it went back to that damn multifrequency high pitch drill noise.


I also took an MRI of the Inner auditory canals and Posterior Fossa on my ENTs order. Test came back with nothing that he found wrong, everything within normal variation. I am awaiting my neurologist's opinion on this MRI. ENT has referred me to the Tinnitus Clinic here locally and that was essentially him being done with me.

I also went to a neurologist where he ordered an EEG based on other symptoms I have been having (that were described by me in another thread, but thank goodness these have gone away). EEG results came back fine as usual, I did not much expect anything unusual from an EEG.


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How do you deal with professional interaction, and the results of what follows? As I understand from reading this board, many people if not all people receive absolutely no consolation from ENTs or neurologists and the tests they can provide. This is due to not just to the collective lack of understanding of T, but also the types of any type of treatment and observation available beyond habituation and therapies.

When is enough enough? Did you continue to push for additional testing? Did you stop at this point and say that your problem is with you until the end, better focus solely on habituation?

My issue is that when at both my neurologist and ENT although I felt that they listened to me, they seemed incredibly dismissive of my description of symptoms. I think most if not all people can probably relate with this. I am considering trying different neurologists although I may stick with the same ENT as I assume essentially all would order an MRI that I received and looking at the results of this one would recommend the same course of action as the problem appears neurological at this point.

I know I am new to this and many people have gone decades in their journey with tinnitus. My heart goes out to everyone here.

I was just wondering - what makes people persist in following up with other doctors and tests, and maybe even beyond that what would be available to me? I have read very few things about additional testing (fMRI, EMG, PET) and understand most of the time these are research environment only and it would be essentially impossible to get further testing.

I am incredibly fortunate to live in a place (USA) where I was able to have an EEG and MRI done within 2 months of the onset of this, and want to take a moment to say that regardless of the information they have provided I am appreciative and grateful I have opportunities like this. I know others here may have longer times or even no access at all to this type of help.


How did you react at first? Did you keep pushing on with doctors/different doctors? Did other tests give you any satisfaction? Did they yield any results?

 

@DanielMac ,
It's Audiology you need to see regarding a hearing test and maybe white noise generators and counselling .
They will be more caring to your needs with tinnitus.
Glad to hear your tests are ok.
Love glynis

 

Hello Glynis!

I have received a hearing test before my ENT, only minor hearing loss in the upper frequencies but nothing significant. I am scheduled to start with the tinnitus clinic in a group therapy session a month from now. Thanks for the recommendations though!

 

You have to be your own advocate all my docs said deal with it. This site is were I learned the most you have to go on with life. Anxiety is a big factor to get under control. My T is unknown and I had no priors. Hope your therapies are going well.
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