Please, I Need Help and Encouragement. Can't See Any Hope and Don't Know What to Do.

If you're 4 months in then HBOT will probably not do much. For the laser to work there needs to be damage to the cochlea, otherwise they won't do anything. I thing Greg gave you good advice and I think he's probably right.
 
None of the ENTs, audiologists, doctors or psychs I've seen seem to understand hyperacusis at all.
@Rojo
So very sorry to hear you're struggling so badly with this. It truly is an infliction for sure and such a sad state of affairs when at least ENTs or Audiologists don't understand a condition they're supposedly trained in :(
 
I feel like when I take magnesium (glycinate) last night it made me feel sleepy and sedated but made the T and H, which were already spiking, worse. Isn't magnesium supposed to help? I'm worried I'm deficient but maybe that's not my problem; last I checked my blood levels were right at 2.5 being the max of "normal" so even if blood levels don't necessarily reflect tissue levels I'm probably fine?

I really just need to somehow calm the TTTS down, it seems worse by the day and has since the first day of antibiotics just over a month ago. It feels like it's the reason my ears ache and burn, if it wasn't for that growing sensation and the other TTTS symptoms I would almost feel like the H in terms of at least sound itself was no worse than before or even a little better. I feel like I have some weird TTTS, pain, discomfort, seizure-like hyperacusis rather than anything being too loud; I have way increased startle and my brain feels hyperfocused on every sound it hears. The benzos barely take the edge off and then when they wear off it's almost unbearable :( please I don't know what to do, does anyone have any advice? There's a chiropractor nearby that can look at Gregs stuff and takes my insurance and just needs a doctors referal from a primary that I'm still waiting to get through my new state medical, but like everything else it's taking time and I feel like I'm spiraling.

How in the hell can I get my TTTS to calm down?
 
Does anyone else feel like they get headaches and like, body sensations of anxiety on hearing sound? Have I just between my anxiety and possibly benzos gotten my bodies emotional/limbic system wound up and/or kindled? How do you even go about addressing or reversing that phenomenon? It feels like I couldn't get better unless it's reversed but it just seems to keep getting worse in a vicious cycle?

Idk what medications I could possibly even try since antidepressants seem to cause a bad reaction and almost everything seems to spike/exacerbate/damage the T and H. Anticonvulsants seem like they would be the go to to try and stop the CNS kindling with the hyperacusis, but those are some heavy duty meds especially considering my current precarious and complicated state, and how poorly I've reacted to medications so far.
 
Everyone tells me I'm on such a tiny dose for such a short amount of time, I shouldn't have problems or addiction or withdrawal issues. Am I crazy for heavily disagreeing considering what I'm going through and what I've read?
Hi @Rojo -- I'm truly sorry to hear what a difficult time you're going through. I can relate to virtually everything you've written, as my health profile is remarkably similar to yours. Lyme diagnosis; serious upper cervical/neck issues from head injury/whiplash; major gut issues (which I believe was caused by my neck issues); extreme MCS (multiple chemical sensitivity) including to most drugs; difficulty calming my system; Orthostatic Intolerance; and many other issues, including a severe case of ME/CFS to boot.

It's taken me decades to figure out a lot of my health "stuff" to the point where I could understand why certain things work well for me, and others make me worse [BTW, I believe 90%+ of my health issues originated in my neck]. One of the first things I realized--and had to come to terms with--was that most doctors had little to offer me. So I had to learn to find ones that were actually understanding of my unusual (and overwhelming) set of health symptoms, and then do what they could to assist me.

But for the most part, I was on my own. And one of the most imporant things I learned was that most of what works for me falls in the "alternative", "low-risk", "long-cost" "foundational-building" categories. In short, my general approach to improving my health is for the most part completely antithetical to most modern, conventional way of thinking.
Please, if there's anything I should try or any hope at all, tell me.
I don't want to die. Please someone tell me I still have a chance, give me some hope, anything.
please I don't know what to do, does anyone have any advice?
All I can do is offer what's worked for me. I believe it takes a flexible and determined individual (perhaps desperate as well) to go off the beaten path of allopathic conventional medicine to explore what might actually work, even though it may seem quite bizarre to do so at times. If you're open to hearing about various unconventional approaches to health like intermittent fasting, DMSO, coffee enemas, castor oil packs, polarity/energy/spiritual balancing exercises, mHBOT, nutritional considerations, specialized neck treatments, and more, I could expound on some of them.

From your profile, I'll just mention that I think mHBOT (mild HBOT) may be the best thing for you to consider at this time. It has the potential to begin lowering your Lyme bacteria levels (without more antibiotics). This would likely allow your body to reduce a great deal of neurological stress you're currently dealing with. It would also more than likely allow you to start sleeping better, which would go a long way toward reducing your various sensitivities.

From what I can gather, you seem to have--like myself as well--some kind of vagus nerve dysfunction [which can stem from upper neck issues and/or Lyme]. This critical nerve extends to both ears, and it's important it be supported in whatever way possible, as it's the "master orchestrator" of the body's parasympathic nervous system (the part that calms things down). -- Supporting it is especially critical at your current juncture of being shortly after your tinnitus/hyperacusis onset. Addressing the body's "stress response" is important as well.

BTW, I used benzodiazapines for a long time, and successfully withdrew from them over an 18-month period. I feel that if I had had a home mHBOT chamber during this time, I could have likely completed that withdrawal in a 1/4 or less of the time. Also BTW, mHBOT chambers can be leased by the month in some areas, and generally cost around $600 per month. Compared to some of the things you're considering, that price almost seems like a relative bargain.

All the Best...

@Arseny
@humptydumpty69
@Bam
@lymebite
 
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Nice post. I did HBOT. I was in a real dark place at the time. I also got off of five years of benzo addiction. Adipose stem cell therapy in Phoenix, AZ for $6500.00 did it. It was like a huge B-12 shot that lasted for a long time. I agree a home HBOT system would be the way to go...
c-60 I'm looking it up...
 
Hi @Rojo -- I'm truly sorry to hear what a difficult time you're going through. I can relate to virtually everything you've written, as my health profile is remarkably similar to yours. Lyme diagnosis; serious upper cervical/neck issues from head injury/whiplash; major gut issues (which I believe was caused by my neck issues); extreme MCS (multiple chemical sensitivity) including to most drugs; difficulty calming my system; Orthostatic Intolerance; and many other issues, including a severe case of ME/CFS to boot.

It's taken me decades to figure out a lot of my health "stuff" to the point where I could understand why certain things work well for me, and others make me worse [BTW, I believe 90%+ of my health issues originated in my neck]. One of the first things I realized--and had to come to terms with--was that most doctors had little to offer me. So I had to learn to find ones that were actually understanding of my unusual (and overwhelming) set of health symptoms, and then do what they could to assist me.

But for the most part, I was on my own. And one of the most imporant things I learned was that most of what works for me falls in the "alternative", "low-risk", "long-cost" "foundational-building" categories. In short, my general approach to improving my health is for the most part completely antithetical to most modern, conventional way of thinking.



All I can do is offer what's worked for me. I believe it takes a flexible and determined individual (perhaps desperate as well) to go off the beaten path of allopathic conventional medicine to explore what might actually work, even though it may seem quite bizarre to do so at times. If you're open to hearing about various unconventional approaches to health like intermittent fasting, DMSO, coffee enemas, castor oil packs, polarity/energy/spiritual balancing exercises, mHBOT, nutritional considerations, specialized neck treatments, and more, I could expound on some of them.

From your profile, I'll just mention that I think mHBOT (mild HBOT) may be the best thing for you to consider at this time. It has the potential to begin lowering your Lyme bacteria levels (without more antibiotics). This would likely allow your body to reduce a great deal of neurological stress you're currently dealing with. It would also more than likely allow you to start sleeping better, which would go a long way toward reducing your various sensitivities.

From what I can gather, you seem to have--like myself as well--some kind of vagus nerve dysfunction [which can stem from upper neck issues and/or Lyme]. This critical nerve extends to both ears, and it's important it be supported in whatever way possible, as it's the "master orchestrator" of the body's parasympathic nervous system (the part that calms things down). -- Supporting it is especially critical at your current juncture of being shortly after your tinnitus/hyperacusis onset. Addressing the body's "stress response" is important as well.

BTW, I used benzodiazapines for a long time, and successfully withdrew from them over an 18-month period. I feel that if I had had a home mHBOT chamber during this time, I could have likely completed that withdrawal in a 1/4 or less of the time. Also BTW, mHBOT chambers can be leased by the month in some areas, and generally cost around $600 per month. Compared to some of the things you're considering, that price almost seems like a relative bargain.

All the Best...

@Arseny
@humptydumpty69
@Bam
@lymebite

Please, give me everything you got. I'm desperate. Each day since I was in the last psych ward and on the antidepressant is worse than the last, I'm afraid I'm going to kill myself soon. I tried just a little bit of 5htp and L-Theanine last night, thinking maybe I could get the "good" feeling from SSRIs without the huge crash afterward and that I could make myself relax without using the benzos, which seem to give me a few hours of lucidity and ability to function slightly before also crashing and making it worse every time (but I can't stop them because I'm addicted??? I DON'T KNOW WHAT TO DO). Big mistake. I did feel good for a few hours, then the migraine and what feels like fucking seizing in my brain, brainstem and spine from sound came on stronger - I literally couldn't stand the sound of the tv on at the other end of the house this morning while my mother got ready for work. It even seems to be affecting me visually as well (I get a lot of visual sensations when I wake up at night/in the morning. blurriness, shaking, black spots and swirling lines, floaters, I can't take fast or alarming motions/movements (I think I've made myself sicker trying to play my Switch from christmas even on silent, with earplugs, and the joycons in my hands under 6 blankets) etc.). Today I've only been able to take my ativan and lay in bed trying to rest, except I can't sleep but still feel like I'm having dreams while awake (seeing/hearing things in my brain if that makes sense).

This feels like it's beyond hyperacusis and my experience has been to expect zero knowledge, understanding or help from doctors or hospitals and ESPECIALLY psych wards, and trying an antidepressant is literally all my parents and crisis worker want me to do. I feel alone and spiraling right now. I wanted so badly to get better. I wanted to live god damnit. But I can't survive like this. If I don't feel better than this somehow, I'm going to kill myself. My life is over, I can do literally NOTHING except sit here and suffer.

Someone please help. Give me something I can do, someone I can see, somewhere I can go where they understand and can help me. For the love of god, please. There has to be help somewhere. A doctor or a hospital. Some sort of treatment or testing to figure out whats wrong. PLEASE I DONT WANT TO DIE THERES SO MUCH I STILL WANT IN LIFE PLEASE PLEASE.
 
Please, give me everything you got. I'm desperate. Each day since I was in the last psych ward and on the antidepressant is worse than the last, I'm afraid I'm going to kill myself soon. I tried just a little bit of 5htp and L-Theanine last night, thinking maybe I could get the "good" feeling from SSRIs without the huge crash afterward and that I could make myself relax without using the benzos, which seem to give me a few hours of lucidity and ability to function slightly before also crashing and making it worse every time (but I can't stop them because I'm addicted??? I DON'T KNOW WHAT TO DO). Big mistake. I did feel good for a few hours, then the migraine and what feels like fucking seizing in my brain, brainstem and spine from sound came on stronger - I literally couldn't stand the sound of the tv on at the other end of the house this morning while my mother got ready for work. It even seems to be affecting me visually as well (I get a lot of visual sensations when I wake up at night/in the morning. blurriness, shaking, black spots and swirling lines, floaters, I can't take fast or alarming motions/movements (I think I've made myself sicker trying to play my Switch from christmas even on silent, with earplugs, and the joycons in my hands under 6 blankets) etc.). Today I've only been able to take my ativan and lay in bed trying to rest, except I can't sleep but still feel like I'm having dreams while awake (seeing/hearing things in my brain if that makes sense).

This feels like it's beyond hyperacusis and my experience has been to expect zero knowledge, understanding or help from doctors or hospitals and ESPECIALLY psych wards, and trying an antidepressant is literally all my parents and crisis worker want me to do. I feel alone and spiraling right now. I wanted so badly to get better. I wanted to live god damnit. But I can't survive like this. If I don't feel better than this somehow, I'm going to kill myself. My life is over, I can do literally NOTHING except sit here and suffer.

Someone please help. Give me something I can do, someone I can see, somewhere I can go where they understand and can help me. For the love of god, please. There has to be help somewhere. A doctor or a hospital. Some sort of treatment or testing to figure out whats wrong. PLEASE I DONT WANT TO DIE THERES SO MUCH I STILL WANT IN LIFE PLEASE PLEASE.
If you knew that a real treatment exists and will be available for Hyperacusis and Tinnitus in 2019, would it help your anxiety?
 
Someone please help. Give me something I can do
I think the only thing you can do is to stop taking all of the drugs (including Ativan) and just stay home for a while. In this case, time is the best healer. Eventually you should be able to sleep.
I've tried protecting, not protecting.
Ears take forever to heal, so unless you tried protecting for 6-12 months, you can't really say that you had gaven it a chance.
Will I ever really possibly get better? Should I have hope and stay in there?
In one or two years, your T will hopefully fade, and if it doesn't your emotional reaction to it will likely not be as strong.
 
seizing in my brain, brainstem and spine from sound came on stronger - I literally couldn't stand the sound of the tv on at the other end of the house this morning while my mother got ready for work. It even seems to be affecting me visually as well (I get a lot of visual sensations when I wake up at night/in the morning. blurriness, shaking, black spots and swirling lines, floaters, I can't take fast or alarming motions/movements
As I mentioned in my earlier post, your profile sounds pretty similar to mine. I believe a lot of my hypersensitivity is originating from my upper spine, neck, and brainstem areas. When you mention shaking, I experience that as well, though I generally think of it in terms of trembling. I think I'll share a recent experience I had, if for no other reason than to let you know that I've somehow managed to overcome various crisies I've experienced.

About two weeks ago, my wife and I were settling in to do our regular evening time of reading to each other. But my ears were going through more turmoil than usual, and I wasn't even able to listen to her soft voice without it causing various kinds of sensations relating to over-stimulation. So I just decided to lay there and rest, and let her do some reading on her own. A couple minutes later or so, she turned a page in the book, and it hit my ear in such a way that it sent a shiver through my body.

I crawled into another room, and curled up in a fetal position. Shortly afterwards, a deep trembling started rolling through my system, and it took everything I had over the next 1-2 hours to keep from letting it consume me. The deep trembling started to taper down after about 2-3 days, but continued at a lower level for several more days. What helped me weather this "storm" was practicing a spiritual technique I've used for over the past 30 years now. It involves singing (silently or out loud) an ancient spritual mantra of HU (somewhat similar to OM). It's sung in sort of a long, drawn manner, and is described on this short 3-MIN. VIDEO. It never fails to take the edge off of things I experience to at least some degree, whether it's trembling, tinnitus, etc.

@Rojo, you said you were interested in everything I've got to offer. I've only got so much energy, but will do my best to share what's worked for me. And try to do it in an order that would be the most beneficial to you. I think learning about the HU Song could be important for your situation. so I started with that first. You may not have any interest in it at all, which is an individual choice of course. -- In my next post, I'll try to fill you in a bit more on how castor oil packs and coffee enemas could be extremely helpful in calming down your over-reactive system.
 
They say not to overprotect for hyperacusis, but even not wearing ear muffs around the house seems to be too much for me because my tolerance continues to collapse further and has been doing so for 4 months. Should I go with heavy overprotection instead then? Unless it's the nexium, or the benzos, or the lymes, or whatever is fucking damaged/wrong with my brain or nerves that was making me feel sick for 5 years and made my digestion basically stop working and made me hemorrhage all this weight with huge inflammatory bags under my eyes since 1.5 years ago, none of which I feel like I can do anything about?

Did I mention I live with parents who have no fucking clue about any of this, refuse to believe me because I have "a disorder" aka anxiety, and will never ever have a chance in hell of just letting me "rest" for months and years to try and get better?

I feel scared and totally fucked. Do you think noise therapy will even be able to help me? I'm worried I'm a category 4 and/or there's an underlying cause that I'm not able to get under control causing my continued collapse; I'm so so much worse than when this all first started. To be clear, it's 100% the H that is my enemy right now. I would kill to have "just" T, even loud or intrusive at this point.
 
As I mentioned in my earlier post, your profile sounds pretty similar to mine. I believe a lot of my hypersensitivity is originating from my upper spine, neck, and brainstem areas. When you mention shaking, I experience that as well, though I generally think of it in terms of trembling. I think I'll share a recent experience I had, if for no other reason than to let you know that I've somehow managed to overcome various crisies I've experienced.

About two weeks ago, my wife and I were settling in to do our regular evening time of reading to each other. But my ears were going through more turmoil than usual, and I wasn't even able to listen to her soft voice without it causing various kinds of sensations relating to over-stimulation. So I just decided to lay there and rest, and let her do some reading on her own. A couple minutes later or so, she turned a page in the book, and it hit my ear in such a way that it sent a shiver through my body.

I crawled into another room, and curled up in a fetal position. Shortly afterwards, a deep trembling started rolling through my system, and it took everything I had over the next 1-2 hours to keep from letting it consume me. The deep trembling started to taper down after about 2-3 days, but continued at a lower level for several more days. What helped me weather this "storm" was practicing a spiritual technique I've used for over the past 30 years now. It involves singing (silently or out loud) an ancient spritual mantra of HU. It's sung in sort of a long, drawn manner, and is described on this short 3-MIN. VIDEO. It never fails to take the edge off of things I experience to at least some degree, whether it's trembling, tinnitus, etc.

@Rojo, you said you were interested in everything I've got to offer. I've only got so much energy, but will do my best to share what's worked for me. And try to do it in an order that would be the most beneficial to you. I think learning about the HU Song could be important for your situation. so I started with that first. You may not have any interest in it at all, which is an individual choice of course. -- In my next post, I'll try to fill you in a bit more on how castor oil packs and coffee enemas could be extremely helpful in calming down your over-reactive system.

Yes, please do. I hope the video is captioned because I cannot seem to tolerate electronic noises like tv, videos, music, games, etc. though I don't really know why. I can't go outside, can't drive, can't fucking do anything and haven't been able to for a month or two now. This honestly sounds like my regular experience with sound these days, practically everything seems to hint at starting off that brainstem tremoring/seizing and the spasming. I fear the benzos have been giving me a barrier against it all without actually fixing anything and in fact making it worse, while I exposed myself too much thinking it was fine when it was just ativan numbing my bodies reactions.

That or it's been my only lifeline and it's crapped out on me, I can't stay on it anyway as the county psych workers don't prescribe benzos as a policy so when I see mine I will be forced to start a taper.
 
You are young. You really going through the shit right now but you'll figure it out. There is so much coming in the near future as well. Find a med that works and settle it for the long run... Mirtazapine ans Seroquel combo for sleep might be the ticket.

Don't do antibiotics as well.
 
If you knew that a real treatment exists and will be available for Hyperacusis and Tinnitus in 2019, would it help your anxiety?
Nice post.

I do believe things will turn around in the very near future. To the young ones out there you will get by this and be a better person for it. I believe people who go through this become more loving and giving. We know and live with empathy, and though peace may be currently hard to find we know about its greatness first hand. Enjoy the ride it will get better. In this near future the question wont be so much about what is there for us, it will be more about how much does it cost.

love,
ruiz
the old man film maker, song writer, father, lover of the earth.
 
Has anyone ever been to the tinnitus and hyperacusis clinic at UMMC in baltimore MD? I have an appointment there tomorrow morning and wondering just good of a specialist I should be expecting to see, if I should get my hopes up at all of them knowing how to help.
 
I have an appointment there tomorrow morning
Hey @Rojo -- I'm happy to hear you're at least getting in to see somebody who might be able to help your situation. Sometimes, all we can do it just take things one step at a time until things begin to start falling in place a little better. -- Best of luck with your appointment!

As I think about your situation, it seems to me the most important immediate goal is for you is to find a way to calm down your over-reactive system--on all levels. One way I've learned to do that for myself is to stimulate the vagus nerve, which as I mentioned earlier, is the "master orchestrator" in the body of the parasympathetic nervous system.

Here's an excellent 10-minute video on the function of the vagus nerve, and 3 powerful ways to stimulate it. He talks about: 1) Cold, 2) Bitters, 3) Coffee Enemas (which he says is the most powerful of all). Whenever I watch it, I again think VN stimulation would likely be very good for treating some of the underlying dynamics of tinnitus. It often takes the edge off for me, and more importantly, helps me calm down to a much greater degree.
 
I am in the exact same boat as you. For me it has been 6 months since I've left my home. My parents also do not understand at all. I've cut off contact with my sister.


Save your energy on arguing with them. I don't have any advice on how to make them understand besides just choose your battles. I found I kept getting even more sick each time I engaged in an argument with my mom. It destroyed me that they're so deep in denial and ignorance.


I'm scared all the time too. If it's any consolation, 4 months ago paper bags hurt me. Now voices don't burn my ears anymore . Now I go on daily walks. I still don't leave to go anywhere public. But it's a first step. And I'm just as confused as you are on my next steps.

I overprotected my ears and then slowly weaned myself off. But I don't plan on ever going into a restaurant again.

People who have read my earlier posts might understand why.

Anyway, you're in thought vortex. "What if?" "What are the next steps?" "What if I fuck up?".

You need to get out of those thoughts. It'll improve your symptoms a little. I'm still in the thought vortex but it's not as bad as before.


I'm sorry I don't have advice. I'm only 2 more months "older" than you in the Hyperacusis world. I'm also still very much in despair.
 
master orchestrator" in the body of the parasympathetic nervous system.

@Lane I like the new nervous system research conclusions that have been coming out in the last few months on what causes physical tinnitus, but I know that this isn't the total thesis.

Lots of research conclusions points to blood flow where distraught arteries from injury and/or hyperextension of head bending/lifting from injuries to joints, nerves and muscles. Often an unbalance spine is present.

Improper blood flow from an artery from maybe a narrowed artery, twisted artery or artery near any of the atlanto joints not inline or a condition/disease anywhere within the spine.

This can cause any of thousands of other problems from causing high cholesterol to thyroid and sinus problems. A group of arteries in the neck that include the vertebral and superior cervical ganglion arteries can cause disfunction to other cranial arteries and thousands of processes that we have with physical tinnitus.

Finding the right arteries to remove the outer layer or to inject is a guessing game unless large amounts of dye is given with testing.

http://www.mccc.edu/~behrensb/documents/documents/2011NervousSystemPathologyw6.pdf

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2881998/
 
@Rojo Not knowing what your taper schedule was makes it different to comment about that. With that as Bill said, give that some time. As one doctor once posted here and another doctor from a tapering site, among others elsewhere, tapering requires twice as long with tinnitus.

Your tinnitus increases while laying on back probably because of twisting jaw during sleep. From the twisting, pressure is being placed on many muscles in mouth, neck and face, but more so on your C1 C2 and nerves on the backside of neck and lower head. Sleep on your sides.

For jaw twisting, a soft full pillow. Sleep with head straight over shoulders, but with a very slight downward head tilt. Try to gently keep one hand under jaw without pressure until you fall asleep. Try to keep lips together and lower jaw in a slight frontward position. A super thin soft flexible mouth guard that won't cover wisdom teeth. If damage happens to teeth then a mouth guard isn't going to help as much. So it's better to get a guard now.

For hyperacusis get an old CD player or boom box that has a replay setting. Play a pink CD of a running stream at 25-30 decibels 10 feet to 12 feet from head while sleeping. Listen to it during the day off and on.

Panic attacks understandably are difficult, so you should try safe mode when you lay down. Keep a small light on from a distance such as a plug in like a Christmas bulb where it doesn't shine in your face. After lying down think about something that you like with imagination. Some think about their favorite football team in action against another team.

Most that I have mentioned in this post has to do with preparation to sleep. By doing these thing your brain will thank you as just a simple comment. The best therapy to start with is making your bed upon entry your friend.
@Greg Sacramento my mouth guard I wear at night for 8 hours and another 5 hours throughout the day is rock solid for my TMJ/TMD. It also doesn't keep my jaw in a natural resting position. My teeth are probably a 1/4 inch from touching, they don't overlap like normal when the mouth guard is in (My jaw is more open). It feels comfortable, but is this normal? The jaw not being in a natural resting position when wearing a mouth guard? Could the TMJ doctor just not be experienced with tinnitus and just gave me the wrong or too bulky of a guard?

Also do these small soft night guard like you have stop the teeth from shifting back out of place?
 
I also just read that the night splint should be hard, because if it's soft when you're sleeping you tend to chew on it and muscles won't rest.
 
If you are wearing this as a lower guard for shifting then it's fine if your thorax doesn't become sore.
If it's an upper guard it would also be fine as you have off balance of your C1 axial.
Some need a less thick guard - a 2mm which is 5/64 inches if they have tight neck muscles or in having some TMJ joint problems.

Also important with relation to your C1 is to not form a habit of placing your lower jaw back which sometimes happens with a axial joint - C1 problem.
 
The audiologist assessed my LDLs (roughly 50-55) and my hearing (notch down to 20-25 around 2k and 30 around 16k, otherwise normal/good) and gave me a task of finding a noise that doesn't sound/feel unpleasant and listening to it every day for 5-10 minutes, says I'm not ready for sound generators/broadband noise yet. We work on that, the anxiety with non-medication methods (CBT breathing meditation exercise yoga), and moving forward with seeing doctors for other somatic issues, and follow-up in a month for the next step forward. Didn't really address a lot of what I'm worried about in terms of underlying/comorbid health conditions other than the anxiety in relation to miso/phonophobia. I'm worried this isn't "enough" therapy considering my condition is worsening but I guess they're the "expert" right? I'm not sure what to use since sound from electronic sources always feels "grating" for some reason, whether its my computer speakers. laptop, sound generator, phone, Switch, anything... any suggestions?

On a side note, does anyone else feel that when they leave their safe quiet comfort space and go out into the world for challenging/potentially aggravating things and sounds like driving and stuff, their ears seem to adjust and feel "better" for the day or two before going back down (usually feeling worse, at least seems to me). Sometimes I wonder if this means I'm overprotecting and staying in silence too much, and that I would maintain/improve my LDLs and sound tolerance better if I went out and exposed more, even with plugs/headphones on. Or does it just mean that my ear is aggravated but "numbs up" and then I feel the force of the setback delayed by a few days?
 
Sounds reasonable!

You can listen to your parents or friends talk (at the loudest volume that doesn't make you uncomfortable).

I mean, this sounds like less than what I already do every day? There's random household noises and I talk with my parents some each day. There's generally a limit to what I can tolerate and then my ears start complaining more and more... I don't understand how my brain works anymore. Something changed fundamentally when this all started... the "panic disorder" which really just feels like anything that feels good and gets, I don't know my serotonin or dopamine or whatever going, just crashes after awhile into feeling even worse than before. It feels like it's at the root of all of this. Could it be a problem with the vagus nerve? Is it a psyche thing, some imbalance or shortage of brain chemistry? Am I just damaged in some way now with no real way of knowing or fixing it?

Maybe this is my problem, but I still feel really hopeless. I don't see the way in which anything is going to reverse how I keep feeling worse into feeling better. Maybe it's Lyme, maybe I have something autoimmune like MS. My body, brain and ears still all just feel broken. I'm still strongly considering taking my life soon if things continue to get worse.
 
Hey @Rojo -- Thanks for the report on your visit with the audiologist. Sounds like he had some tips for you to consider, albeit rather limited for your very challenging circumstances.
Could it be a problem with the vagus nerve? Is it a psyche thing, some imbalance or shortage of brain chemistry? Am I just damaged in some way now with no real way of knowing or fixing it? -- My body, brain and ears still all just feel broken.
You're probably getting used to getting some unconventional suggestions from me :rolleyes:. Soooo, thought I'd share some links to a brain hemispheres (cortices) energy balancing technique. I do it 1x-2x/daily feel it significantly helps me and my own brain function. -- The videos are relatively short.

Balancing the Cortices Technique

How to "Tap Out" your Cortices

Also, you may want to check out a story by a woman who's skull was crushed at birth, and struggled mightily to make it through life. She eventually found another "tapping" technique (EFT) that helped turn things around for her in some miraculous ways. Her story is a bit long, but you may find it inspirational, and give you some hope your own situation can be significantly improved. -- All the Best...

Story -- EFT for Sensory Overload and More
 
Thanks, I will try and watch these videos the next time I feel capable of tolerating electronic sound; I wasted the hour or two of post-traumatic-venture-into-world numbness on playing a little bit of my Switch because I miss actually playing games with sound. Sadly it seems I've already reached my limit of tolerating input - it's like my brain has an extreme version of sensory overload/stimulation disorder with a particular emphasis on the ears. Did anyone else ever feel this way or is this somehow related to me/my health issues uniquely?

I just want to feel normal again. My mom says its literally all anxiety but there doesn't feel like any way it could be that profound. A lot of the dysfunction feels related to eating, my gut and I'm assuming the vagus nerve as the mediator of the gut-brain axis. I find I am able to give myself head sensations/migrainous feelings by flexing my pelvic floor muscles. There really feels like some sort of damage or something to my gut, the nerves and how they work that heavily influence the problems on the other end with my brain/senses/emotions. Some serious gut-brain-axis shit going on idk.
 

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