Tinnitus Newbie Desperate for Answers, Trying to Determine the Cause — From Cervical Injuries?

@Greg Sacramento, thanks. I find the theory interesting. It would mean that there is a "psychosomatic" tinnitus in the sense that the mind is perpetuating this due to limbic system activity (I think) - which would seem to give credence to Jastreboff's theory. I wonder if your former colleagues have witnessed this.

@IntotheBlue03 - sorry for hijacking your thread - had to collar @Greg Sacramento somehow!

 

@IntotheBlue03 - I just saw comments on your page about Gaby Olthuis. I would not look in that direction. We all know tinnitus is hard but those things don't help us much. You are trying to get through the anxiety stage and you have been doing well. Keep going and keep believing. Most go through this phase and it does pass - take it from me with my history.

On a related note, I saw you reference watching TV with subtitles. I wanted to add that I think that is an excellent idea. I saw an article somewhere on the net about a doctor who got tinnitus and said that he realised that he needed to do what he could to distract his mind away from the tinnitus as much as possible. He said that he started to watch TV with subtitles with the sound off in order to train himself not to focus on the noise, whilst getting used to being in silence.

If you can do that, and read it, if possible, I think it might help you in the same way.

Best

 

To lower anxiety when going to bed, I cut a 3/8 to 1/2-inch strip from a surgical sponge and place behind lower front teeth and let the rest of the strip hang over the sides of my mouth. I don't chew in my sleep.

I told this to my dentist, and he now does this. He said I don't need my mouth guard anymore.

 

Are you going to try the TENS?

 

@Greg Sacramento, another poster told me that you were really good with neck issues and I'd like to ask a couple questions if you don't mind.

8 months ago I hurt my neck and immediately had non-stop dull agitating headaches on the right side from base of skull to behind my right eye and also started extreme anxiety from out of nowhere. The anxiety settled on tinnitus a few weeks ago.

I've had CTs and MRIs and they show compression at C2/C3 and 4,5,6 don't look great. My neurosurgeon is 50/50 on surgery because I'm only 41.

I've tried seemingly everything for the head/neck issues but nothing seems to give relief. I've seen the terms PRP and Prolotherapy. Can you speak to those things regarding my situation or is there anything else you could recommend? Thank you for any guidance you can offer.

Ben

 

Hi @Ben Johnson, a 2021 study in Pain Medicine used diagnostic blocks to the synovial joints of the cervical spine to find that in those with headache greater than neck pain, the C2/3 joint was the source in 62%, with C1/2 (7%) and C3/4 (6%). In those with headache less severe than neck pain, C2/3 was the source in 42%, with lower cervical joints in 18% and the C3/4 joint in 7%.

Occipital nerves with neck pain and headache account for most of remaining percentage.

This would likely be C2/3. Occipital nerves may have some input as well.

Before nerve blocks, try these exercises for two-three weeks, but be careful.

Neck Exercises - Key To Pain Relief & Restoration (necksolutions.com)

Apply some warmth, a rung-out washcloth on back of entire neck without applying much pressure. Do this for a minute or two - six times a day. When sitting behind a computer or when neck is sore, slightly bend head forward and then slowly bring head back to align straight with shoulders.

With just compression at C2/C3 and 4,5,6 - the above may help. Warmth, exercises, a physical therapist should be helpful and last if needed nerve blocks.

Consider some Glycinate Magnesium three to six times a day where last use is one hour before sleep. Use only 400 mg total a day. Liquid form is better and with that you won't need to cut pills.

Wishing you the best, stay in touch.

 

Hey @Sentinel, can you share those ACRN YouTube tracks that are working for you? I’m desperate to find sound therapy that works for us and doesn’t backfire.

 

Hey @Uklawyer, yes, thanks for checking on me. I was very shaken up after being blindsided by that euthanasia video. I was on here looking for positive reinforcement and success stories when someone shared that with me and told me it gives him strength. Whatever that means. I should have just checked in with you and @DebInAustralia for all the positivity I need.

Good news is I’ve located half a dozen unofficial “success” stories and still somewhat active users who seem to match my symptom profile (high frequency, reactivity etc) who all were struggling in the beginning but seemed to habituate within 6-12 months so that’s been encouraging.

I also shared with Deb that, despite recent setbacks, I’ve had rare moments (5 minutes or more at a time) where I’ve forgotten about the tinnitus altogether while on my phone or driving. I know it’s early but I want to remind myself of those little wins as much as possible. I still have hope I can find some kind of sound therapy too to give me temporary relief when needed, hopefully some of those users can share what they know.

That’s interesting about the subtitles. I’m still not much of a TV watcher but I’m playing what I can on my phone on low and trying to see if I can get back into podcasts (all I ever listened to while working) because that seems a safer bet than music at this point.

 

@IntotheBlue03, has your tinnitus lowered any?

I got it in 2013 from medication. It was rough the first year and a half, but in the 3rd year I forgot about it.

Now 2 weeks ago I made a mistake and I'm back. But this time around I notice I can function better somewhat.

 

Hi @Hottopic29, no the baseline has stayed the same, I have reactive tinnitus that competes with all external sounds including my voice so it’s been very difficult to deal with and impossible to mask. If it wasn’t for the reactivity I think I’d be dealing with it a lot better. It seems that it has lowered but I think that’s only because I have calmed down somewhat from severe panic and have learned to limit the sounds around me.

It took almost 3 years for you to habituate? No offense but that terrifies me as I’m 2 months in and losing my mind. What is your new tinnitus like and how did you get it?

 

Do not lose your mind @IntotheBlue03. Or lose it and let a new mind take its place.

A little quote I found. "The main lesson from Buddhism and Mindfulness is this: start by accepting that things are as they are."

It's from this page:

http://www.myspiritualquotes.com/illness/

Read the quote again. It's strange, it is a truism in spirituality and therapy... and yet, I still feel that touch of confusion when reading it. When I absorb it, it brings me a measure of relief. I know it is not easy to grasp this at the moment. Try not to fight. Accept. It does not mean you should concede. Accept what is right now. Because it is. Take a moment. And continue on.

Does that mean anything to you?

 

I appreciate all your efforts to keep me grounded, I need it. Yes I’ve always been interested in Buddhism despite the skeptic in me as it always seemed like a practical way to deal with the difficulties and limitations in life. I know acceptance will take time, I just wish I knew more about some of the mistakes I’m probably making at present that could be agitating my tinnitus.

For example today has been interesting, I drove for the first time in my car without the most intrusive unbearable qualities of my tinnitus. The reactivity was lower and the physical sensation (oscillating and zinging), though I could still hear the tinnitus, it was manageable. Due to this I instantly felt myself calming down and returning to a homeostasis. I know it’s early to try and track patterns and cause/effect but I’m wondering if my recent illness (severe cold with double ear infection) affected this because of the medications I started taking as of yesterday.

Just documenting this here for future reference:

Clindamycin 300mg
Tylenol Cold & Flu severe (Dextromethorphan HBr)

Also luckily 9 weeks in I’ve never seemed to be affected by any supplements one way or another outside of medication (Grandaxin and above). The only true variables seem to be external sounds and my anxiety level.

In addition, I have completely stopped being around any constant sounds (white noise, refrigerator, auxiliary fans, traffic outside my bedroom window, etc), and I’ve noticed my tinnitus is lower in the mornings ONLY when I’m not sleeping there.

Interesting enough I was listening to some high frequency white noise when I first got in my car and felt tinnitus oscillating/reactivity increasing, then after 5 minutes accidentally turned on a podcast and felt both decreasing. Maybe there’s a way to somewhat tame this beast just yet!

Logging this as part of my journey in my thread.

 

To IntotheBlue03:

Although most assuredly much easier said than done, consider this as a form of ultimate CBT methodology for arresting any hellish, overwhelmed reaction to tinnitus:

"Everything can be taken from a person but one thing: the last of the human freedoms - to choose one's attitude in any given set of circumstances, to choose one's own way...

For what then matters is to bear witness to the uniquely human potential at its best, which is to transfer a personal tragedy into a triumph, to turn one's predicament into a human achievement."​

Dr. Victor E. Frankl, when asked what psychological frame of reverence he adopted to survive that most extreme of all imaginable situations, namely Auschwitz.

His addendum point was that no matter how threatening a phenomena or set of circumstances are, everyone still has the quite independent capacity (which is also our most human trait) to decide how he/she will interpret this and respond accordingly.

Analyze and write down as many thought processes as you can recall during these two months of tinnitus that have buttressed and protected you from going irremediably insane, attempting suicide, etc.

Refer to them for reassurance if or when your situation suddenly appears to be insurmountable.

 

Thanks @DaveFromChicago. I greatly appreciate this advice for CBT. At this point I’ve signed up with a “Team” who work together (an audiologist trained in TRT and a Psychiatrist trained in CBT who handles her tinnitus patients). Surprisingly they both supposedly have tinnitus so I hope they grasp the severity of my situation. I meet with both of them next week. I have the OTO App too but obviously I don’t think anything can substitute for actual therapy.

To me it seems I may have to live in a smaller box than I thought for now but I’d rather survive in a box than suffer more than I need to. It’s a shame there isn’t a roadmap for tinnitus subtypes yet so we can avoid so many tragic mistakes that increase our suffering, like not listening to white noise for 3 weeks when you have reactive tinnitus like I did and be on the verge of a massive heart attack from severe panic attacks and stress response.

You are right though along with the forum to chronicle my journey, I will be incorporating daily mindfulness to hopefully combat the coming setbacks. So thankful for this place and all of you!

 

@IntotheBlue03, so happy to hear you are finding little moments of peace in the storm. I have also found some of these recently.

Mornings are usually rough for me but I got a call from a long-winded friend this AM and it really took my mind off everything, then I just had a few small (and very low stress) things going on around the house and the tinnitus didn't really annoy me for several hours. I knew it was there but it just wasn't front and center. Of course, it hit with a vengeance early afternoon but I think it's important to hang on to these little victories and learn from them.

It seems that stress is a huge part of this equation. Even simple everyday stressors like traffic, can't find the remote, etc... In the early stages, it's like you need to create your own little bubble to live in for awhile.

 

I am so happy you are already experiencing brief periods of relief. You’re definitely stronger than me. I’m barely functioning at this point and have resigned myself to a quiet controllable section of my house unless it’s absolutely necessary to go out.

Yes, stress is a huge factor, I’m actually not even sure what my true baseline is because while it has appeared to have come down I know that’s due to anxiety calming down and learning how to deal with the reactivity better i.e. today. It’s crazy because as I type this I can walk between 2 rooms, one that’s an internal living room and another that’s a bedroom with a window and my tinnitus spikes as soon as I walk in the bedroom from picking up low level outside traffic. Absolutely ridiculous but good to know.

 

@Greg Sacramento, thank you for the info you provided to me regarding cervical issues. I went to a physical therapist today and he said my right trap is very inflamed and loaded with knots/trigger points. I'm hoping that reducing the inflammation will help with the tinnitus.

One thing I discovered is that when I turn or tilt my head to the left, it makes the tinnitus increase. Also, when I clinch my teeth or open my mouth wide it makes the tinnitus increase. Nothing seems to reduce it except Klonopin, unfortunately.

Does any of this information tell you anything regarding my tinnitus situation? Thank you.

 

@Uklawyer, have you seen the movie Cast Away with Tom Hanks? The movie ending is different from the DVD.

I had once talked with someone who knew one of the script writers of Cast Away. The writers wrote several endings.

In the end, Chuck faces the road which leads to the woman with angel wings’ house, and he smiles. The ending leaves ambiguity about Chuck’s fate. Does he follow the woman, or does he choose some other road? The film hints that the woman is single now when we find only her name on the plate outside her house, which had previously mentioned her husband’s name too. Could she be the one he was supposed to end up with? Was he glad that his plane crashed changing his destiny?

His time on the island has taught him enough to survive the most trying circumstances. He has also learned to follow the signs, all of which have arrived at the most opportune of times and have kept him alive when he thought he was going to die. He receives the sign once again, in the form of the angel wings. Why shouldn’t he follow it now?

The writers want the audience to wonder as to what could happen, but they also wish the audience to believe he goes back to the woman's house.

A person's destiny could change in endless ways every day. That's life.

I once looked very much like Tom in this picture, his expression.

 

I don't agree with this guy on everything, but he's right about this:

Why Does My Tinnitus Change in Volume When I Turn My Neck? (hearinglosshelp.com)

 

@Greg Sacramento, it looks like you are picking me up on my confusion over the act of accepting what is in the present moment. Yes - that's my expression. In fact, that is how I react to most things, as the little cogs in my head start turning and I try to grasp the meaning of life. I find people most confusing of all. Suffering, inequity; that's just part of life. But we might find something to aid us in our experiences and trials in life if we reflect upon them.

I just went to see a healer here in France. She received a message from a friend during our session and she then asked to call her. Turns out the friend is a medium. Whilst driving, many miles away her friend proceeded to tell her and me all about me. She was scarily accurate about a number of things. Her friend suspected I am "HP" (I guess high IQ in English). Apparently there is high intelligence IQ and high emotional IQ and you can test for both. Everyone has told me that I am fine physically, even though I have ME/CFS and the tinnitus on top. I do not know how tinnitus interweaves with that. But apparently these "HPs" suffer because they see the world in a different way. We shall see.

Back to your question, funnily enough, Cast Away in one film I have not seen but that I have always been interested in seeing. I glossed over your remarks about the ending because of that, though some of what you wrote appears to describe principles of quantum physics if I'm not mistaken. I think I might find that film...

@DaveFromChicago, nice quote. Victor Frankl's story and his resilience in the face of unfathomable suffering in the Holocaust is truly inspiring. I believe he also deduced, through his suffering, that the meaning of life is to be found in love and in productive work. That works for me.

@IntotheBlue03, @DaveFromChicago is known as the site's walking dictionary, as he appears to have swallowed one. Generally cynical by nature, he exudes surprising positivity and strength in that post and has clearly endured much suffering on his own journey.

I think that certain frequencies do irritate the ear. I used to have some sound reactivity to flowing water from a sink or the shower and the noise of a hair dryer and fan. I think that is mostly gone, but when I listen to white noise I do sometimes feel a little irritated by it. I guess that it matches the frequencies at which we have some problems. From a hyperacusis angle, I think we need to get used to these noises again and it might be a good idea to reintroduce them slowly.

Hopefully your TRT person can help you with this. It is great that you are seeing someone for CBT and TRT. I really hopes it helps you. I am sort of doing CBT, but my focus is on everything else, in the hope that dealing with that stuff will, ultimately, help with the tinnitus. Oh, and the cold may well have had an effect on your ears. If/when you are better, see how you are then.

 

To Uklawyer:

The Dictionary that I "swallowed" is nothing more than having graduated as an English Major.

In 1976 (when I graduated), about 8% of American College Grads majored in English. Now it is less than 3%, and many Universities are considering not even offering it as a Major.

In fact, it is frankly not possible to get Tenure as a Humanities Instructor anymore. Exponentially rising College costs are compelling students to demand Majors that will guarantee gainful employment, and The Study of Literature is a luxury too dear to be concentrated on.

Incidentally, I heard that in our Ivy League computer programming is the most popular major (with the expectation of becoming one of those hip, wealthy Silicon Valley Notables).

It is very sad that among the numerous, insuperable crises afflicting American Civilization, there is also a rank, philistine dismissal of the value of Literature.

My cynicism is only borne from the cumulative expenditure of about $12,500.00 in an effort to achieve even a modicum of relief from this condition with no success whatsoever.

In fact, everyone I know who has researched this condition has commented on the astounding plethora of placebo, quack junk hyped as legitimate treatments.

Let's see if Dr. Shore's device will to some degree finally be the Eureka Answer.

 

@DaveFromChicago, you can say that again. Just from my high deductible garbage health insurance I will have spent almost $10k once all the bills come in and I’m no closer to confirming the cause, aside from the experts here, or from having an iota of relief outside of antianxiety meds.

My fragile mind is banking on Dr. Shore’s device unfortunately. Seems to fit someone with my symptom and tinnitus profile well.

Further Note: I think it’s the cold medicine reducing the tinnitus further for me unfortunately. It’s either that or the combo of it with Grandaxin which I spaced out as far apart as I could. Not sustainable every day obviously and probably ill advised.

 

Thanks @Uklawyer. You are correct, the cold/double ear infection was definitely causing the ear muffling. 2 days into antibiotics and my hearing is “restored” in that sense. So scary to have all of this at the same time though. I’ve just never had ear problems when sick so I was worried about the worst (sudden hearing loss, etc).

The reactivity is my biggest issue and I pray it’s tied to the hyperacusis and could improve once that does.

I hope the reactivity has mostly gone for you. Looks like you are already on the right track with mindfulness and hopefully some sound therapy.

 

Hey @Uklawyer, @Lane and anyone else interested.

I just got sent these protocols for tinnitus off label for Alpha-Stim and I’m not sure how I feel about pursuing it. Thoughts? I didn’t know they had applied it prior for treating tinnitus.

 

There's not many who have logic, understanding, emotional knowledge, reasoning, planning, and critical thinking, but you are one.

I would really like to have you as a neighbor - a lasting friend.

 

@IntotheBlue03, with respect to treating one ear at a time, I am not too sure about that. I believe that neurostimulation is generally done on both ears at the same time (certainly, in the case of bimodal stimulation, the sound element is played across the two ears simultaneously). See below.

I also would not turn the frequency up as high "as high as comfortable". I believe @Lane has already advocated starting low to see how it feels/works, and, again, I believe that such is frequently touted as the most sensible approach when working with treatment that stimulates the apparatus of the ear.

As for placement of a reference probe in the Concha, whilst using the other electrode to treat the other ear, what are the probes like? They are not clips? Are there different endings you can use? And what is the purpose behind the reference probe? Physics was never my strong point, but there is no explanation of this in the text.

The same applies to moving the electrode(s) around the outer ear. No explanation. You could certainly try different positions though along with keeping in a single spot. Which spot though, I do not know.

The text then implies that silence is achievable after a single use. Or does it mean residual inhibition? Apparently tinnitus is "reduced considerably" after a single cycle (so somewhat contradictory to the aforementioned implication of zero tinnitus after a single use).

So to me, this implies great results using a protocol with no solid explanation behind the method. I would just see this as electrical stimulation that might help. Start low, probably use on both ears at the same time, for a short period, build up a little and see if you notice anything.

You said you are seeing someone for TENS treatment. There you can look at placing electrodes over the DCN.

 

@Greg Sacramento, is that meant for me?

Sorry, I had to ask, because we have not interacted much directly on here. But that seemed to me to be just about the most heartfelt and considerate thing that someone has said to me. I read it back several times and honestly teared up. I was wondering what prompted you to say it. Still am.

You seem to give so much to people on here. Remarkably knowledgeable and generous with it. To me, and to many other here I am sure, you are an amazing and invaluable support. I could only wish for someone like you as a neighbour. A friend, if you are asking me, already done. An honour and a privilege.

As with you @IntotheBlue03.

@Greg Sacramento, you are in Sacramento, right?

 

@IntotheBlue03, I actually just read about a couple people doing cervical exercises. There must be a connection. They heard cracking and clicks in the ear and were finding relief eventually.

CERVICOGENIC TAPPING: FIX NECK PAIN, TINNITUS,...

McKenzie Exercises- Cervical Retraction in Sitting

 

@IntotheBlue03, how are you getting on?

 

Yes.

When I was young, being a non-paid crisis counselor, a little girl's mother called a child a loser and told her to get out of the car. The mother then drove off. The girl was found hungry and confused days later and was placed in a boarding home. We had much discussion and then she got married, had children and a happy life. She and others like her also help to shape my life.

If others insult, argue, use "I' in every thought with strong particular subject matter thoughts and beliefs - will at some point say goodbye. It's useless to have a friendship with people like this, because they're too concerned with self and are pretending that they care for others. These types will often pretend to be nice in public forum but also often have a history of being insulting or cunning if you have different thoughts. They will also say cruel things behind your back in a private setting.

I grew up outside of Boston and at about age 30, moved to Sacramento.

You would be a very close friend. No group of quotes could summarize how special you are.