Appointment with Neuro-Otologist

[LB88]

I have had tinnitus for over 4 months and have seen many doctors...GP, ENTs, neuro, allergist, psych, rheum. I have had no luck at all. I've tried quite a few meds and I'm not sure if they are helping, hurting, or doing nothing at all. I have prescriptions for seroquel and plaquinel but have been scared to try them.

I've had a few medrol packs, and tried vistaril and valium. As of right now, I'm on medrol (4mg) daily (started at higher doses), gabapentin (100mg), Xanax, and ambien as needed. I don't do well with SSRIs in general. In the beginning, medrol seemed to help a little and same with gabapentin. Now, I truly don't think anything helps at all (except the ambien for sleep).

I have noticed some people say klonopin has been helpful - maybe this is worth a try as Xanax does not help me at all? I am on the fence with gabapentin and medrol. In the beginning, I thought both were helping, but now it actually seems worse. If I stop, I feel weird though. I feel stuck!!

I see a neuro-otologist this week and wondered if anyone had any suggestions for the visit? I bring all my scans and x-rays each time and a list of symptoms and treatments I have tried, and every time I leave with nothing and an overwhelming feeling of sadness that I'm out of options. Very sad and depressing. If anyone has any suggestions for a better way to present my case and be heard, I would greatly appreciate the advice. I feel like this is my last hope.

Also, any suggestions for a spike that is in your head too?? A really bad one? I'm just at the end of my rope. Thank you!

Awful spike, hearing cicadas and sirens...

 

[Amber]

I see a neuro-otologist this week and wondered if anyone had any suggestions for the visit?

They probably won't be able to help, we are stuck with this noise

 

[BuzzyBee]

Sorry, but don't be surprised if they can't offer up any real solutions. It's never a bad idea to get your ears checked, though.

 

[ChristopherD]

@LB88 Don't waste your money with doctors, they are officially licensed scam artists. Their drugs will not heal your ears, but only fuck up something else in your body. I already went to three different ENT doctors, and it's the money what they are after, not healing us.

I'm done with them. They sure will exhaust your wallet before any sort of progress, remember my words. I honestly think they really don't even know what they are doing in terms of tinnitus.

Start doing your own research, read everything you can, you will understand the symptom more by that way than what you will find out with them. In the long run, you will be the expert on tinnitus.

I think it's only worth to take their medications within the three day window after the onset of tinnitus. Other than that, keep going with them if your willing to waste your money in false promises.

Not all doctors are bad, it's just that 98 out of 100 doctors shouldn't be doctors.

 

[Kolisar]

cicadas

Wow, that perfectly describes a portion of what I am hearing, thank you!
Perhaps this will help some people better understand what I am experiencing.

 

[LB88]

Are you hearing cicadas and sirens too?

It's so sad that nobody can seem to help or even truly understand. I'm frightened to let go of the doctors entirely. I will let everyone know how it goes but I'm guessing it be will as fruitless as every other appt. I get my hopes up only to be disappointed.

Is anyone taking anything to help get through this? I go back and forth as to whether the meds are even worth it anymore.

Thanks everyone and best of luck dealing with this very frustrating sound!

 

[BuzzyBee]

Awful spike, hearing cicadas and sirens...

Cicadas are my baseline sound, though it sometimes switches to a loud running faucet sound or a hiss that's like a skillet or air being let out of an air mattress. The sirens come and go, but are (thankfully!) less frequent.

Good luck with the doctor appointment, and if it is truly a waste at least you can come back here and vent about it.

On the other hand, maybe you'll be lucky and the doctor will have some good advice.

Another approach (one that was recommended to me) would be to locate a special type of chiropractor who practices neurology. You can use this web page to search your area. I have not yet seen this type of doctor, but it seems to me a doctor who studies the brain might be more helpful, and being a chiropractor that person might take a more creative approach. It will still cost you $$, but you need a doctor who will think outside the box but who is not quack.

https://acnb.org/DoctorLocator.aspx

 

[LB88]

So it was a total bust. Big shock. He didn't tell me one thing I didn't already know. he said mine seems worse than many cases he works with and that I should try CBT and acupuncture.

He did mention topamax and other meds for variant migraines, but I have already been down that road with no luck. He also said to try noratryptaline but that it's not "his area" and he refused to write me a script for it. It's not like I'm trying to take drugs! I just want to feel better, and even with side effects...you never know. It's worth a try. I will probably get to a point where I don't want to try anymore, but I'm not quite there yet.

In any case, he seemed relieved to get out of there. I'm officially done with doctors for awhile. I am supposed to go on a trip with my family next week and I truly feel too out of control to go. I know it should help take my mind off it, but instead it seems to highlight all the things I can't do. I am becoming a "before tinnitus" and "after tinnitus" person and just can't shake how lucky I was before and I didn't even know it. I just can't go on like this and don't want to.

 

[LB88]

Thank you guys for the suggestions. Just feeling in a super dark place...which I knew I would, but it's still hard to fully prepare for it.

 

[Pomme]

@LB88 Most of us here know exactly how you feel. Keep going taking it a day at a time.

 

[Kolisar]

Are you hearing cicadas and sirens too?

Cicadas, absolutely. Fortunately, I do not hear sirens.

Just feeling in a super dark place...which I knew I would, but it's still hard to fully prepare for it.

Hang in there @LB88. I can sympathize with being in a dark place. Tinnitus is debilitating. There is hope. There are a lot of success stories here. Many people have found relief. Everyone's case is different and unique. What works for one person many not work (or work as well) for someone else. But, do not give up. You will find a light that will help lift the darkness. It may be a post, a friend, a poem, a song, or anything, but you will find something. If you have not, @Michael Leigh has a number of great, and highly informative posts that may provide some strategies for you to both approach your tinnitus from a healing perspective, and from a coping perspective; seek them out, they will help.

I wish you well, and hope you find your light and comfort.

 

[LB88]

Thank you. I will look at the posts as I'm struggling to find hope. Mine is really more hissing/screeching and cicadas. Not sure why I used the word sirens. Just very loud! Thanks and best wishes!

 

[Mario martz]

I think you should totally totally go to your appointment,
there a a lot of causes for tinnitus.
so you never know... get your ears/hearing checked

 

[Michael Leigh]

I have had tinnitus for over 4 months and have seen many doctors...GP, ENTs, neuro, allergist, psych, rheum. I have had no luck at all. I've tried quite a few meds and I'm not sure if they are helping, hurting, or doing nothing at all. I have prescriptions for seroquel and plaquinel but have been scared to try them.

HI @LB88
If you have been using headphones regularly or attending places were loud music is played, your tinnitus was most probably caused by loud noise. You haven't said what has caused it so I don't know but exposure to loud noise is the most common cause of this condition. Please click on the links below which you might find helpful. Try to read the posts in full and not skim through them.

All the best
Michael

https://www.tinnitustalk.com/threads/tinnitus-a-personal-view.18668/
https://www.tinnitustalk.com/threads/hyperacusis-as-i-see-it.19174/
https://www.tinnitustalk.com/threads/new-to-tinnitus-what-to-do.12558/
https://www.tinnitustalk.com/threads/can-tinnitus-counselling-help.22366/
https://www.tinnitustalk.com/threads/tinnitus-and-mental-health.21978/

 

[LB88]

At this point, I'm not sure what caused it. I have not had exposure to any loud noises or used headphones or ear buds. I'm trying to determine the cause and cannot seem to find one so far. After 4 ENTs, neuro otologist, neuro and audiologist, they all say ears are fine. The only thing they found is a mild high frequency sensoneural hearing loss. I'm scared that maybe meds have caused it but I'm not sure and nobody in my area seems to know much about tinnitus.

 

[ChristopherD]

@LB88

Medications can and do cause "tinnitus". Like I told you before, the cure for tinnitus won't be resolved with money loving ENTs or the typical doctors doing the job for financial gains.

It will only occur through research from someone that is going through this suffering, probably it will be someone that has a doctorate in something, and his eternal search for the cure, someone like Dr. Josef Rauschecker.

I hope I get to live that day, not to long down the round.