Please Help — Rapidly Progressing Hearing Loss — Considering Suicide

So, this is what happened to my ears in just 2 months. Not sure what the cause was but it's either a middle ear muscle problem or a vascular one. The low frequency loss in the left is believed to be conductive, but again, nobody knows, as usual:


That being said...I need help to heal my ears, and referral to stem cell treatments or laser therapy...whatever has worked for people on here who have lost their hearing and had it restored effectively, as soon as possible, and preferably if I can access the treatment within the western U.S. (I can't fly anymore, so...).
I cannot take steroids because of their interaction with my chronic health conditions, and HBOT is out because the pressure changes would wreck me. Hearing aids would also not work because of my tulilo vertigo and hyperacusis; I don't want to lose my hearing faster anyway.

Reason being for needing prompt help is that I have autism, and having sensory degradation is literally destroying my life and my mind; this is all coming from my mild hearing loss. My visual processing is not working right (how bout going part blind while going deaf too!), and so is my balance and spatial awareness, because my sensory integration is caput. I fear my my memory may be suffering as well, either from the sensory problems, my meds, or one of my co-occurring health conditions. There are all kinds of other health problems going on that I can link to the autism-hearing loss relationship, and not my other health conditions.
I've also been struggling with emotional chaos and severe depression nonstop for 2 years because of my hearing problems, because of how important sound is to my differently wired brain. It feels like having one of my family members shot dead every week or twice, or my town being nuked, because that is how it feels to lose sound around me. I'm losing the ability to tolerate the pain and isolation from not being able to hear things very dear to me in my world, not having my music to evoke my spirit, having dreams destroyed, etc. It's led me to pursue an AS, because I cannot stand the torture any longer and it is only getting more severe over time.
I really don't want to go down this route, but this kind of torture, along with my other disabilities, has destroyed my spiritual health, my ability to pursue nearly all of my passions, work and school, and my social life, and my limited ability to leave the house at times. That's not where one wants to be in their early 20's.

That being said, any help regarding effective treatments for my inner ears will be greatly appreciated.

Please don't tell me to get psychiatric help to cope right now; I've gone down that road and there has only been pain, and very little gain. My counselors have all been demeaning and unconcerned with understanding my POV, and medications contributed to this whole mess in the first place and have ruined my health in some way or another; and they never helped with the depression, btw. I don't want to be imprisoned in a psych hospital, force fed literal poison, and listen to people who don't understand autism and will degrade me for living how I live and needing what I need.

 

These issues could be caused by liver or kidneys not working as they should since it seems your other senses are being impacted. You could try doing a blood test to see if anything is off and if something is found to be off then it might be fixed. Might as well try right?

Could also be caused by a brain tumor and that's fixable as well in most cases. Was an MRI scan done?

You need a doctor/specialist to try and find out why you're going blind and why you're losing your hearing. I would make sure to mention all symptoms even if minor such as headache, pain, unable to sleep, waking up during sleep, etc...

 

I don't know what to say other than I also have autism, and my hearing symptoms are absolutely destroying me as well. I really empathize with you.

 

@Coyotesheaven There is a Lumomed clinic in Florida for LLLT. http://lumomed.com/florida/

 

I was thinking of suggesting LLLT to the thread creator as well, but was unsure if it would help their condition as the cause of their condition's progression seems unclear. The clinics are quite expensive too, so it may be out of the question for them (as it has been for me). Could always check out the DIY LLLT thread... hope the thread creator is managing alright.

 

My hopes/prayers are with you! Be strong and don't give up.....

 

@Coyotesheaven

Do you have an audiogram from before all of this started? I have found that if you are within one standard deviation from one test to the next they will not note any change in your hearing. I had to go through all of my audiograms myself to show them that it was fluctuating. Looking at these 2 audiograms, this isn't enough of a change to warrant their concern. They are looking for big huge fluctuations between audiograms. If they don't see what they are looking for, they will dismiss it. Doesn't mean that they should. I would suggest that you go through all of your audiograms and note where you see fluctuations of 15db or more. Don't point out anything smaller to them, because that will also cause them to dismiss you.

Trust me. I have spent time looking for stem cells too. They could be of use to both of us at some point. But, right now you need to figure out what is wrong with you. You won't know if stem cells could be helpful until you do. My guess is that we both have some sort of smaller problem which is leading to the problems in our inner ears. So far, I haven't found anyone willing to think too long about what that might be. That isn't going to stop me from continuing to try to get to the bottom of this. You shouldn't give up either.

 

@Jkph75

It is a really dumb tactic when they dismiss losses at or greater than 10 db in a short amount of time; that's what I call being lazy, because ignorance is not an excuse for me. That practice absolutely needs to change and I know it has led to negligence on your end too. I had an audiogram performed May 2014 which needs to be retrieved, as well as one from 2012 which is when I used to have my dog ears (every threshold was like at -10!!!).
In the 5 year timespan I have lost about 30% of my useable hearing, but around 40% of that was due to loud noise exposure in the past (from Feb. 2012-about Aug.2015).

The oldest one I do have is from April 2015. It shows some loss from the original acoustic trauma. But according to the last one it has gotten much worse in just 2 years. It actually was remaining relatively the same just a year ago with slight fluctuations.


Also, I should note that the 125 hz loss in the left ear from 2 weeks ago was indeed conductive and due to a bad E. tube from a cold. That did get better temporarily...

 

@Coyotesheaven

Maybe if you could find the one where every threshold was -10, then....

I thought you might be interested in seeing my latest audiograms. I had one 3 months ago which showed hearing at 15db in every frequency except 2 of the middle ones I believe which were at 20db. This was slightly lower than the previous one. Now the first one I have here is from Wed. The next one is from Fri.
Conclusion? I have some eustachian tube problem. Nothing to worry about. It's almost funny at this point.

 

@Jkph75

You sure you have a eustachian tube problem exclusively? If you can clear your ears and don't feel fullness, it's probably not a eustachian tube problem.
I have seen low frequency changes before from when my E. tube cannot open on its own, including from a recent event. But the low hearing loss did not resolve once my eustachian tubes were working properly again. Mine is still a vascular issue.

Did they perform a tympanogram on you to verify that it was a eustachian tube problem along with the bone condition results? If the peak on those falls a certain number of standard deviations away from the expected peak, then you do have some eustachian tube component.
But if they did not show that, I would be skeptical of what they told you. Could be a different kind of middle or middle and inner ear problem.

 

I'm sorry. I was being sarcastic. What I meant to say was that to me these audiograms suggest that I have a pretty big problem. My Otologist looked at them and said that my nerve hearing is normal and stable and that I have a fluctuating conductive loss. He said that the conductive loss is from a eustachian tube problem and/or sinus inflammation. I had a slight negative pressure in my ear. The first test here was close to -1. The second was -.5. Sometimes, I can't open my eustachian tube.

I am very skeptical. I guess I have to laugh about it, because I don't really know what to do anymore. My point in showing you was so that you could see that you are not alone in not having your fluctuations taken seriously. I really thought that these tests would warrant some concern, but I guess not.

 

Did they give you betahistine?

 

Me? No. I live in the US. They don't give that out here. Plus, they wouldn't give it to me considering they are saying that my hearing loss is only conductive, though I think that I have more than that going on.

 

I was asking @Coyotesheaven, but your name was tagged in the quote which I didn't realise.

 

No problem

 

if you want it, it's pretty easy to get online, legally (and safely, from licensed normal pharmacies).

In the US there is no law against importing medication of any kind for personal use, provided that the medication in question is not something which is in any way controlled here. That is, stuff which is available by Rx in the US can't be imported without a prescription, but stuff like Betahistine which is both unavailable here and not listed in any of the DEA controlled substances lists, can just be ordered no problem.

 

@Ed209

Yes, I was on betahistine for a month and I saw no difference unfortunately. The good news is was that it was mostly side effect free.

@Jkph75

Odd that they will not give you betahistine. I got mine just for asking about it even when they thought the problem with my ears was minimal. Perhaps see if you can get it prescribed by your GP or someone else; they should give it out.

 

Did you get it filled at a pharmacy here?

 

Some similarities we face. No idea whats going on for me. https://www.tinnitustalk.com/threads/sudden-low-frequency-hearing-loss.21082/#post-243412

you doing any better?

 

@SilverSpiral

Unfortunately I'm not. Ears are still deteriorating in the highs and lows.

I'm really sorry you are facing the same situation. I hope they found something via tests.

I'm currently under suspicion for mechanical inner ear injuries (vascular problem, intra-cochlear pressure problem, something related to potential mild neck sprains) and autoimmune diseases. And once again I've been told I could have an infection in my nervous system.
But I just don't know anymore; I'm sick of the medical system treating me terribly, ignoring my needs, and calling my psychotic....sometimes I think of going in with a gun to get what I want out of those lizards...but not to rant on that anymore. At this point I'm not expecting to be helped in time before I really do lose everything sound-wise.

 

I don't know if you've considered this or its been said before but have you been to an immunologist? I went to one a few months ago for my Tinnitus and he specifically said if I have rapid hearing loss it could be an autoimmune issue. .

 

I thought that @Coyotesheaven has Lyme.

Lyme is immune killer and screws everything in yiur body for real.

He needs to kill Lyme if was tested poaitive. Not juat Lyme but Babesia and Bart that come along with it for the most part (in US).

 

No he thought he had lyme but tested negative several times iirc

 

My understanding is there is other conditions you can get which could lead to hearing loss and tinnitus as a result from an autoimmune issue. Food for thought anyway

 

@Jkph75
I have had tinnitus for a month now due to standing next to a speaker at a concert for less than an hour. I also developed mild Eustachian tube dysfunction in which my doctor says is due to my previous cold. I still have blocked ears though. My hearing test is normal and so is my tympanogram. I was prescribed prednisone over the phone (no doctor saw me) but haven't taken them as I was scared that it might be ototoxic. Although, I have a 24 hour flight to South Africa in less than a month and I am desperate for relief from this pressure in my ears! It's bad enough that I have to fly with tinnitus as the plane is very loud. Since you have Eustachian tube problems, what is your advise? When my ent saw my results, he recommended to not take prednisone as my tubes should eventually get back to normal, but I don't want to suffer on this flight or cause this blocked feeling to get worse. Also, I used a neti pot which only made my ears worse and caused a bit of pain in my ears. @Coyotesheaven, my situation is no where close to yours, but I wish you luck and my prayers go out to you. I am 14 years old and have developed great anxiety from my situation. I cannot imagine how this must be for you. Good luck my friend

 

@Michelle G at your age your chances of complete recovery are VERY high. Just wait it out 6-18 months and be safe.

@Coyotesheaven - your hearing test is still not that bad. Give it some time and I have a feeling you'll notice it stabilizes.

 

@Pleasure_Paulie

I am considering an autoimmune condition or some kind of infection restricted to my brain. The one woman doctor that I saw raised the concern of autoimmune encephalitis. I will be getting blood work done as well as a spinal tap in June to rule this out.

But what I really think is going on is mechanical in nature, however. Specifically, some kind of neck injury, or a number of (very) minor neck injuries combining into something like whiplash. I was carrying a lot of heavy things or doing extreme exertion activities in the weeks before most of my chronic health problems started. While I don't remember anything happening to my neck, each of these events was followed by a migraine and hearing damage. Then I had a fall almost exactly a year ago and remember hearing a crack in my neck, despite only falling on my hand. That was followed by what could have been a TIA in my (brainstem?) a few days later, and the immediate development of forward head posture. I thought I was having a stroke! Since then so many things beyond loud noise trigger the hearing damage to start up again.
So many triggers for my hearing loss involve things that put strain on the neck. Like yesterday I blew out even more low frequency hearing just from jerking my head and jumping back after a chicken got too close to me and scared me. I often also get hearing loss from straining, bending over, walking on hills or stairs, anything that puts sudden or sustained stress on my neck or neck muscles will do it.
Problem is that the stupid doctors I have seen do not understand that small subluxations in the C-spine and soft tissue injuries from minor accidents are possible, can lead to widespread problems, and that there can be blood vessel and nerve involvement in these injuries.
I have so much evidence for cerebrovascular dysfunction and nerve problems (in my vagus and trigeminal nerves), that not taking this possibility seriously presents a serious risk. Those so-specialists dismiss everything I say, and now I feel like I am paying the price for their ignorance. All they really want to do is place the psychotic label on me because I have female anatomy, and then have me locked up and away from their practice, so long as I hand them money for worthless appointments. So if this thing kills me or permanently disables me, I know who to blame!

 

Well if you think you have spine related issu - go see dr. John Bergman (he is in California though). Chiro + you is the only formula that would work

 

Prednisone is not ototoxic. Your eustachian tubes may clear up before your flight. If you are worried about the Prednisone, you could ask your doctor if you could try Flonase. Of course, you should really discuss all of this with your parents. I wouldn't put too much stock into what you read on the internet. Best to go with what your doctors and parents say. I think that there is a very good chance that all of this will clear up for you. Good luck