- Apr 29, 2018
- 166
- Tinnitus Since
- March 2018
- Cause of Tinnitus
- Ototoxicity
@RojoNone of the ENTs, audiologists, doctors or psychs I've seen seem to understand hyperacusis at all.
You need to give it time (6-18 months) to calm down...How in the hell can I get my TTTS to calm down?
How in the hell can I get my TTTS to calm down?
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.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?
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.
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.please I don't know what to do, does anyone have any advice?
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
If you knew that a real treatment exists and will be available for Hyperacusis and Tinnitus in 2019, would it help your anxiety?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.
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.Someone please help. Give me something I can do
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.I've tried protecting, not protecting.
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.Will I ever really possibly get better? Should I have hope and stay in there?
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.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. 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.
Would it help if you were to show them posts likeDid 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?
Nice post.If you knew that a real treatment exists and will be available for Hyperacusis and Tinnitus in 2019, would it help your anxiety?
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!I have an appointment there tomorrow morning
master orchestrator" in the body of the parasympathetic nervous system.
@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?@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.
Sounds reasonable!gave me a task of finding a noise that doesn't sound/feel unpleasant and listening to it every day for 5-10 minutes
You can listen to your parents or friends talk (at the loudest volume that doesn't make you uncomfortable).any suggestions?
Sounds reasonable!
You can listen to your parents or friends talk (at the loudest volume that doesn't make you uncomfortable).
You're probably getting used to getting some unconventional suggestions from me . 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.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.