Opinions Anyone?? What Should My Next Move Be?

This is going to be long. Sorry!

I’ve had tinnitus since the beginning of April. I woke up one morning with it in my left ear and had excruciating pain. Three weeks in my left ear changed to 3 tones (a doorbell sound, musical sound, and what sounds like a tornado siren) that I hear all the time and I have a sound in my right ear that I only hear in complete silence.

I originally thought it was caused by overuse of earbuds over a few months. There was 2 1/2 weeks between not using earbuds anymore and tinnitus starting. I could tell something was up with my hearing after it started though. I’ve been protecting my ears like crazy since.

A couple weeks ago I was taken to the psych ward at a local hospital by the police for a week because I was just done. They ran a bunch of blood tests that showed that my vitamin d and iron levels were bottomed out. The doctor said he’s never seen levels so low in his career. They put me on an iron pill 3 times a day for anemia and a vitamin d pill (50,000 IU) once a week. I also had an MRI and said they’d call if something showed up. Never heard from them.

They also had an audiologist and ENT come to see me. The ENT didn’t do much except look in my ears, check my throat, and teeth. He seemed to be concerned that I had frequent ear infections as a child until I was 14. He said it was unusual. The audiologist did a hearing test in my hospital room (the AC was on, roommate was in the room, and the tv outside of my room was loud) and it showed a slight loss in low frequencies in both ears. I believe it though because mufflers and air conditioners sound distorted to me. I also couldn’t understand the last couple words when she did the test with words with the background noise. She checked pressure and said it was perfect. We both noticed I didn’t have a dip at 4,000 like it would normally show if the music had caused it. She said she doesn’t believe mine was caused by music because of that. She said she doesn’t think it’s Meniere’s because I don’t have any other symptoms.

My problem is the doctors I saw think they can cure it. I kept telling them the hearing loss has to be the cause and they kept pulling the whole “we’re the doctors, not you” thing and kept saying I don’t know if it can be cured and I need to stop my “catastrophic thinking”

They seem to think that maybe my severe vitamin deficiencies or other issues could be the cause and I don’t believe them. They also thought Prozac and Nortriptyline might get rid of it. Wrong. They have since made it worse, so now I have to figure out how to come off of them without doing more damage.

They also mentioned ECT for my severe depression because they read case studies of 2 people that didn’t have tinnitus anymore after ECT. I think it sounds crazy.

Does anyone have any ideas? What should my next move be, if anything? I know no one here is a doctor, but a lot of you are very knowledgeable.

Sorry again for the long post and thanks in advance!

 

Hi Ash. Why do you think they made it worse? How, I mean.

 

All of the tones in my left ear have been twice as loud since I started taking them and my right ear gets a little louder sometimes. Really I guess it could be a coincidence, but I just assume it is the meds because I haven’t changed anything else or been exposed to any loud noise.

 

I also want to add that the MRI they basically forced me to have made my tinnitus worse as well, which I told them would happen. I took prednisone afterwards, but didn’t notice a difference. All it did was cause me to have pulsatile tinnitus while taking taking it.

 

Yeah that’s what I kept telling them and they just laughed. I don’t know why they think they can cure it.

 

Your tinnitus was caused by hearing loss, modern medicine cannot treat you yet. Keep checking he research threads in hope that within atleast 5-15 years when cochlear hair cell regeneration becomes possible. (hopefully 5 years and assuming curing hearing loss will solve tinnitus) in the mean time enjoy your stay on Tinnitus Talk Support Forum

I don't know if low blood pressure would play a role in tinnitus, and out of curosity because you have low freq hearing loss do you also have low pitch tinnitus?

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4208401/
Show them this paper or video

Roland Schaette talks about tinnitus research...

 

@Ash04 I am not sure why you are questioning the vitamin deficiency stuff. It's really something that is easily addressed and is good to do even if you don't have T. Really no downside in taking care to have the proper balance of vitamins. Everyone should do this.

If you don't trust your doctors in general or they aren't empathetic I would suggest shopping for another one. You are the customer and need to advocate for yourself. This is not to say that the most helpful doctors have the best bed side manner though.

 

Has anybody mentioned endolymphatic hydrops to you? It is a common diagnosis when you have Meniere's symptoms without vertigo.

Do you have an audiogram to show? Are your losses sensorineural? conductive? mixed?

Getting vit D + iron levels back to normal is a reasonable thing to do regardless, so I wouldn't skip that.

 

I’m not sure of exact frequencies. The musical tone is a higher pitch. The other 2 aren't really. Sometimes the one that sounds like a tornado siren makes me think the siren is actually going off in the distance in my town. I have to go outside to make sure it’s just my ears.

 

I wasn’t questioning the vitamin deficiencies. I’m still taking the supplements they started me on in the hospital. I was questioning the fact that they think the supplements will cure my tinnitus even though I have hearing loss. I don’t agree with them.

 

They didn’t discuss any of that with me. The audiologist just said my hearing loss doesn’t match up with what she normally sees from noise induced loss and that they could give me hearing aids. The ENT didn’t say much of anything. I was really upset about the hearing loss and in a bad state mentally, so I didn’t think to ask any questions.

The audiologist and ENT were people the hospital brought in to see me. I guess I should see others to find out the answers to those questions.

I’m still taking the supplements for my deficiencies.

 

That's because not all hearing loss is permanent.

 

side note; if you are taking Prozac and Nortriptyline they both can modulate your T in the short term like the first 2-3 weeks. That would not indicate that the ADs are ineffective of treating depression. I would , however, caution that some the ADs or off label meds used to potentially treat T are not fully vetted and it's a toss up if they will work.

 

Good point. I have only been taking them for 3 weeks. Hopefully it’s just an adjustment period.

 

Sadly this stuff sometimes takes time and it really frigin stinks . Trust me , I get it .

 

Quit letting doctors force you into doing things that you intuitively feel are not right. That would be a good place to start. It seems their input so far has only made matters worse. Which is understandable, because their practical knowledge of tinnitus is SO limited.
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I'd start tapering off those drugs immediately, since you seem to be pretty certain they're making your tinnitus worse. -- I wouldn't discount the role of vitamin deficiencies. I've read that zinc and Vit. A are especially important for the ears, and supplementation has helped others with deficiencies.

To reiterate my above point: Become much more assertive with your doctors--and with your OWN health care. You seem to know what's better for you than they do. Remember, they're "advisers", and any authoritative manner they present should be interpreted as dysfunctional.

All the Best!
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That’s where I ran into a problem. I spent 2 days telling the treatment team over and over again that I didn’t want to have an MRI and didn’t want to take any meds because I was afraid of making tinnitus worse. I told them I would be the one that had to live with the consequences. Because I kept saying no they started threatening to go to probate (go to court and have a judge sign a 90 day involuntary stay) and I felt since I was in the psych ward because of suicidal thoughts that the judge would certainly side with the doctors. I have 2 young kids and can’t be away from home for that long. Sadly, I really didn’t have a choice but to give in at that point.

They had already pink slipped me and made me stay 3 extra days before the above happened.

 

Wow @Ash04, what a horrible story, so sorry you had to go through that. I think one thing we should all keep in mind when dealing with the extreme difficulties of tinnitus, is to NEVER tell a doctor or ER personnel that we are having thoughts of suicide--even if it is the case.

That immediately gives them ENORMOUS discretion on how to deal with us (in your case they could have forced you into a 90-day stay). And many of them will almost assuredly start looking at us through the lens of a "revenue stream" (think VERY expensive MRI). I'm hoping to see a thread on this forum at some point that would discuss these issues in detail.

For instance, I just learned recently that anxiety and chronic lack of sleep can lead to symptoms of schizophrenia. Makes me wonder where that leaves us, with so many of us having gone through that very cycle. Is there a possibility we could be misdiagnosed with schizophrenia, and committed to some kind of mental institution, where they would start loading us up on all kinds of extremely ototoxic anti-psychotic drugs?

 

Why do you think 5-15 years?