Second Anniversary: Finally Found Something That Could Be Promising for Me

[hartstreet]

I just passed my second year anniversary with T that started after a nasal and ear infection. My backstory is included in other posts, so I won't repeat it here.

A few weeks ago I discovered the first thing that seemed to have a notable impact on my symptoms. This was visiting a chiropractor, who adjusted my misaligned C1.

The adjustment didn't immediately improve my T but impacted some of the symptoms that started along with it, which include nasal irritation, limited neck mobility, labored swallowing, and jaw tightness. Since that treatment, my neck/head move in a way that they haven't since this started, and my nasal cavities and ears move and make sounds in a way that suggests something is moving in there.

It's given me an opportunity to focus my treatment, after years of trying everything including GI doctors, allergists, neurologists, and far too many disengaged ENTs, all of whom just shrug and say "you look healthy." I'm grateful that I have something on which to focus my pursuit of recovery/improvement. The worst part of this experience has been feeling like there are no answers and no sense of what lies ahead - of course, to some degree, that's just life. But, it's nice to have even an incremental sign of hope. Not necessarily for a miracle cure, but that I'm doing something reasonable to feel like I'm helping myself instead of just suffering through it.

I have more neurologists and MRAs planned, as well as physical therapy lined up in the coming month, and am researching more cervical spine/atlas treatments, which I'll take my time trying out. If something works for me, I'll be sure to share and maybe others can benefit as I've benefited from exploring others' unique experiences.

Even without this development, I will repeat what many others have said, which I too did not believe when it all first started: it does get better. Not in a measurable way that we all would like, but enough that when I think about it I must admit I'm better today than I was two years ago. And that's not nothing.

Keep going, everyone. And may we all be relieved of some of this suffering one day.

 

[Lane]

am researching more cervical spine/atlas treatments

Hi @hartstreet -- You may want to check out the following video:

Tinnitus- why this symptom is so common in patients with cervical instability

 

[hartstreet]

Thanks @Lane - I saw a number of your posts on this topic since my discovery.

I am confident that cervical instability is a factor, if not the cause of, my issues since:
- I've always had bad posture,
- an MRI (and chiro) confirmed the loss of my lordaric curve,
- I have a number of other related issues of tightness/lack mobility in my neck, and
- the single adjustment I had made such an impact on these issues.

From the video you sent, two issues he mentioned that sounded like they could be happening for me:
- Vagus nerve compression, and/or
- Eustachian tube dysfunction.
Ultimately, as is the case with tinnitus, I will likely never pinpoint what specific medical phenomenon is causing my tinnitus, and it's possible it's more than one. But, it's nice to have something to focus on in terms of directing treatment, since they all relate to the cervical instability I experience.

As far as treatment options, it appears there are a few chiro-related approaches:
- The classic high velocity neck manipulation,
- Trigger point therapy and myofascial massage,
- NUCCA adjustments, and
- AtlasPROfilax treatment.
I am now basically going down this list in order. (All of these to be supplemented with specific exercises and lifestyle adjustments to support the treatment.) The first is what lead me confidently to cervical issues, but is too aggressive for my taste (and my doctor has warned of the risk of stroke - a risk that I am happy I took and was worth the gains I've gotten in knowledge), so I'll continue down the list and report back on any effectiveness.

@Lane - I know you've posted a lot on AtlasPROfilax, and my research suggests that - while I'll admit it initially has some of the signs of what I would think of as a gimmicky scam - pretty much 100% of people who have the treatment are dumbfounded by its results. Someone asked you in another thread, but I don't think I found your response to the million-dollar question: did it help your tinnitus?

Thx!

 

[Juan]

- The classic high velocity neck manipulation,

Is that just the physiotherapist moving your neck fast to one side and then it pops and feels better?

 

[Lane]

I know you've posted a lot on AtlasProfilax, and my research suggests that - while I'll admit it initially has some of the signs of what I would think of as a gimmicky scam - pretty much 100% of people who have the treatment are dumbfounded by its results. Someone asked you in another thread, but I don't think I found your response to the million-dollar question: did it help your tinnitus?

Hi @hartstreet -- In the pasted section below the dotted line, there's a description of how I feel I've learned how to give an AtlasPROfilax treatment to myself.

Let me know if there's anything specific I can elaborate on.
..............................................

The thing about getting this done is that it's somewhat expensive (around $250-300), and since there are so few practitioners (in the U.S.), it's often not easily accessible.​

For a long time this did not present a problem. I was told before getting it that it's usually a one-time "repositioning", after which it's relatively rare to need it done again. Fortunately, that was the case for me, and I was able to sustain my initial significant benefits for the next 10 years or so.​

I then had the most unfortunate experience of experiencing many negative "side effects" from being given an anti-nausea medication (Promethazine, aka Phenergen) after going to the ER in February 2018 with extreme abdominal pain. One of those side effects was some extreme contracting and spasming of my muscles and connective tissue. Parts of my body that I'd had relatively minor problems with all of a sudden became major problems. My right knee locked up, as did my left ankle, and right shoulder. My lower back became very fragile, as did my whole neck area.​

A few months later, I was able to see my original AtlasPROfilax practitioner, who told me my atlas had really gotten whacked out of position. He was able to get in back in position, and within a half hour or so, I felt like a different person, physically, emotionally, etc. Unfortunately, this only lasted about 2-3 days, before I was back to not doing nearly as well.​

I was able to see my AP practitioner again about 6 weeks later. Since my initial AP had held about 10 years, I assumed it was still in place after only 6 weeks. Turns out, it wasn't. Apparently, the drug that had convulsed my muscles and tightened my ligaments had left some kind of residual effects in my body, so that my body could no longer sustain the atlas repositioning as it had done 10 years earlier.​

This realization felt pretty devastating to me at the time, but it got me to thinking a little more deeply about the AP technique itself. A big component of it is to use a special kind of massage tool around the edges of the atlas--the boney ridge right behind the ears. This is to loosen the ligaments holding the atlas "out of place", so that the atlas can then "slide" back into place (and be held by two "pins" in the skull that normally give it a great deal of stability).​

I decided to just start massaging those areas with my fingertips and thumbs on a regular basis, and see if I could get things to relax on my own. I was pretty shocked at how incredibly tender and painful those areas were. And how areas I thought had gotten worked out could become painful again after just a short period of time. It seemed like I was working through "layers" of tightness and constriction.​

But after just a few days (4-5 or so), I started to notice a big difference in how I felt when I walked. It was no longer such a struggle to walk through the "normal" pain and "heaviness" in my neck. Which would often make me lean over, and put my hands on my knees until I was able to regain some semblence of functionality. The necessity of taking those kinds of breaks was pretty much gone after about a week.​

I noticed another, almost "peculiar" thing. As things shifted significantly in my neck area, I was also concurrently feeling a notable difference in my pectoral muscles. They felt a little tender at first, but in very short order, felt quite a bit stronger. It was as if they had been "reactivated", and were now able to help hold my neck in place a little better. I also noticed that besides being able to walk more comfortably, I felt I was walking taller as well. Also... I noticed that within about a week, my endurance and resiliency while walking had literally doubled.​

After only about a week or so of "self-massage" along the edges of the atlas, I felt I had gotten similar degrees of improvement to when I had the AtlasPROfilax adjustment done again after 10 years. I again thought I was likely set for a good amount of time, as AP adjustments usually stay in place. But similarly to what happened earlier, I discovered that if I didn't work on those areas behind my ears on a regular basis, I could easily lose my benefits.​

Somewhat disconcertingly, I also discovered that even if I did do those massage techniques every day, I could still slip into a cycle where my neck and cranial stability were being challenged. So I've continued to look for ways to bolster my neck and cranial stability.​

So, it's an ongoing challenge for me to maintain my improved degree of stability in my neck and cranial area(s). One other thing I've discovered is doing doing some thoracic extension exercises regularly helps me a lot. I thought for a while that if I did them 2-3x/week, it was probably all I needed to do. However, I was doing some work on a plumbing project this week that put my body in unusual position(s), and I decided to do those exercises daily to perhaps provide a little insurance for my body.​

Yesterday was the first day in about a week I didn't do them, and I could definitely feel it in my body this morning that something wasn't quite up to snuff. So it appears to me at this time I need to do those thoracic extensions stretches daily, at least for a while yet. -- So many moving parts!​

To wrap up, I feel I've learned a number of good things to help stabilize my neck area(s), but since it's often difficult for our bodies to incorporate even good things, it's probably best to start out slowly with doing just about anything. Starting them one at a time would also probably be a safe route to go. Of all the things I've mentioned, I'd suggest starting out with the self-massage behind the ears that mimics the AP adjustment. It feels very safe, and may give the fastest results.​

Good luck to those who decide to give this a try!​

Another Good Read (it's long)...

 

[hartstreet]

Is that just the physiotherapist moving your neck fast to one side and then it pops and feels better?

That's right @Juan - for me, I was lying on my back and they would turn/tilt my head toward one shoulder then whip it to the other side quickly, cracking my neck (to use very oversimplified language that I know chiros object to). My understanding is this could impact some of the veins in the neck and lead to a stroke. Again, a calculated risk that every individual must decide for themselves whether is worth it. For me, it was, and was invaluable in illuminating this issue. But, now that I know more about these other options I intend to try those instead - mostly because I think the focus on the atlas more specifically.

 

[hartstreet]

Thanks @Lane, and I'm sorry to hear of your additional complications but happy you've found a self-administered maintenance plan that helps.

I feel cautiously optimistic that AtlasPROfilax, or something focusing on the C1, will provide me some relief. Like you noted, I've been very tender at the base of my skull on the back of my neck, so something is up there.

My working theory is that cervical re-alignment will help my muscle tightness and range-of-motion issues in my neck and shoulders, and also have a positive impact on the flow of nerves and blood through my neck, which will hopefully also lead to some improvement in my irritated nasal cavity, and ultimately - the dream - relieve my tinnitus.

That last step remains the biggest leap of faith. The rest seems to make objective sense based on the mechanics of what my body is experiencing, but as we all know too well here, no one can ultimately predict with confidence what will impact tinnitus.

Which brings me back to a hopeful question for you, I'm curious if you were so lucky that it did manage to stop your tinnitus? I'm happy that it's provided all the other relief you've described, and appreciate you sharing your experience and information!

 

[Juan]

That's right @Juan - for me, I was lying on my back and they would turn/tilt my head toward one shoulder then whip it to the other side quickly, cracking my neck (to use very oversimplified language that I know chiros object to). My understanding is this could impact some of the veins in the neck and lead to a stroke. Again, a calculated risk that every individual must decide for themselves whether is worth it. For me, it was, and was invaluable in illuminating this issue. But, now that I know more about these other options I intend to try those instead - mostly because I think the focus on the atlas more specifically.

Yeah, my physiotherapist used to do that to my neck and afterwards it felt great!

Only one physiotherapist I have known did that to my neck. The others, for some reason, were very cautious... but the truth is it provided relief.

My understanding is this could impact some of the veins in the neck and lead to a stroke.

I dated a nurse and she advised me against this practice, this twisting, or whipping of the neck (please excuse my bad English!). That's when I stopped going to that physiotherapist.. but anyway, as I said, it always felt great afterwards, and I never experienced any adverse effects whatsoever.

 

[Lilah]

I just passed my second year anniversary with T that started after a nasal and ear infection. My backstory is included in other posts, so I won't repeat it here.

A few weeks ago I discovered the first thing that seemed to have a notable impact on my symptoms. This was visiting a chiropractor, who adjusted my misaligned C1.

The adjustment didn't immediately improve my T but impacted some of the symptoms that started along with it, which include nasal irritation, limited neck mobility, labored swallowing, and jaw tightness. Since that treatment, my neck/head move in a way that they haven't since this started, and my nasal cavities and ears move and make sounds in a way that suggests something is moving in there.

It's given me an opportunity to focus my treatment, after years of trying everything including GI doctors, allergists, neurologists, and far too many disengaged ENTs, all of whom just shrug and say "you look healthy." I'm grateful that I have something on which to focus my pursuit of recovery/improvement. The worst part of this experience has been feeling like there are no answers and no sense of what lies ahead - of course, to some degree, that's just life. But, it's nice to have even an incremental sign of hope. Not necessarily for a miracle cure, but that I'm doing something reasonable to feel like I'm helping myself instead of just suffering through it.

I have more neurologists and MRAs planned, as well as physical therapy lined up in the coming month, and am researching more cervical spine/atlas treatments, which I'll take my time trying out. If something works for me, I'll be sure to share and maybe others can benefit as I've benefited from exploring others' unique experiences.

Even without this development, I will repeat what many others have said, which I too did not believe when it all first started: it does get better. Not in a measurable way that we all would like, but enough that when I think about it I must admit I'm better today than I was two years ago. And that's not nothing.

Keep going, everyone. And may we all be relieved of some of this suffering one day.

Glad you found some relief. I went to a NUCCA chiro for seven months, but no improvement.

Can you describe your tinnitus? Is it somatic, high-pitch, fluctuating, bilateral, etc?

 

[gorzakus]

Glad you found some relief. I went to a NUCCA chiro for seven months, but no improvement.

Can you describe your tinnitus? Is it somatic, high-pitch, fluctuating, bilateral, etc?

Hi Lila, what's a NUCCA Chiro and when was the last time you went to one?

 

[Lilah]

Hi Lila, what's a NUCCA Chiro and when was the last time you went to one?

I started mine sometime summer of 2019, for about seven months. NUCCA is a specialized chiropractic style, where the chiropractor attempts to adjust your spine through gentle pressure on the neck areas.

 

[hartstreet]

Hi @Lilah - my tinnitus has evolved over time with some of my conditions. It started on my left, and was more of an intense ringing with other layers of sounds underneath, and has moved to both ears but has mellowed into more of a hissing/ringing that moves mostly in line with my heartbeat. I can modulate it with movements or pressure on my head, neck and jaw, which isn't unique.

 

[hartstreet]

I went to a NUCCA chiro for seven months, but no improvement.

@Lilah - did the chiropractic work have any impact on your tinnitus or any other related health issues you may have? I am encouraged that I really felt the effects of my first "regular" chiro treatment. It didn't impact my tinnitus immediately, but clearly moved things in the area of my broad range of symptoms. Of course, I feel like that was undone quickly, as my impression is this type of chiropractic work requires lots of maintenance.

Have you looked into AtlasPROfilax?

 

[Lilah]

@Lilah - did the chiropractic work have any impact on your tinnitus or any other related health issues you may have? I am encouraged that I really felt the effects of my first "regular" chiro treatment. It didn't impact my tinnitus immediately, but clearly moved things in the area of my broad range of symptoms. Of course, I feel like that was undone quickly, as my impression is this type of chiropractic work requires lots of maintenance.

Have you looked into AtlasPROfilax?

No, I don't believe the NUCCA treatment impacted my tinnitus. The treatment is very gentle, basically as a slight push/pressure on the neck areas. I have not looked into AtlasPROfilax.

 

[LilSass]

Hi @hartstreet! I am planning to have my AtlasPROfilax treatment in early January; I could've had it sooner but I wanted to fully research it first. Now that I've done quite a bit of research I cannot wait! I don't want to put unrealistic expectations on it, but the chronic pain and migraines I experience have led me to believe that all of my symptoms are a result of an atlas subluxation.

I have been to a NUCCA chiropractor who maladjusted me, and my current upper cervical chiro whose adjustments have resulted in a roller coaster of symptoms (things get better, then go back, etc). I just want to be free of this pain once and for all. I cannot find much in the way of negative results except a chiro who mentions someone using a copy cat method.

I am fortunate enough to have an AtlasPROfilax pro an hours drive away.

I realized over the Summer when I had two months of minimal pain/migraine that I can live with my tinnitus, but the pain is the worst - I can only hope that it helps with the tinnitus. I really don't know the cause of my tinnitus. It's not from noise trauma, could be from meds, though I have taken the same meds in large doses with no change in tinnitus.

I will certainly report after I've had my treatment.

I hope this finds you well!

 

[InfiniteLoop]

@hartstreet, I don't understand why the chiropractic work should help when the root cause are nasal and ear infection as stated by yourself. How is your hearing? Do you have reliable audiology tests going to 12 kHz?

 

[hartstreet]

Hi @LilSass - I too have done a lot of research before deciding to take the plunge, and am planning on coordinating an AtlasPROfilax treatment in the new year. I haven't tried an upper cervical chiropractor or a trigger point massage yet, two things I'm also interested in exploring, so will probably do those first.

Did your symptoms react positively to the other chiropractic treatment you tried? The neck cracking I got from a regular chiropractor created all sorts of physical sensations in the area that plagues me, which (in additional to all the other unsuccessful treatments I've explored) has led me to believe that my atlas misalignment is at the center of many if not all my symptoms. But, as you note, the results were temporary and I'm back to the place I was before I started. So, I'm very excited for the AtlasPROfilax treatment, though, like you I'm trying to maintain reasonable expectations.

My research showed an incredible amount of positive reviews from people who got the AtlasPROfilax treatment. I looked at pretty much every review of providers throughout the US and Canada. So many and so positive that it almost makes me suspicious. Many talked about the results in terms of it being a miracle, and life changing, and alleviating some of the exact issues I experience around neck tightness and postural issues. I found only a couple websites that had critical information, and they were from chiropractors who were competitive businesses.

Happy to compare notes, and please do let us know more about your experience after you have the treatment. Keeping my fingers crossed for you!

 

[hartstreet]

@hartstreet, I don't understand why the chiropractic work should help when the root cause are nasal and ear infection as stated by yourself. How is your hearing? Do you have reliable audiology tests going to 12 kHz?

Yeah, I don't understand either why there is a connection between your spine and your nasal cavity, but apparently there is. After my first chiropractic adjustment, my nasal cavities started to move again, and I could hear fluid moving in new ways and my soft palate was engaging in a way it hadn't in years. My best working theory is that the atlas misalignment contributes to poor posture and tension in the neck and jaw, which impacts how the nasal cavity works - whether it's about mucus circulation or inflammation/blockages, I don't know. But I've had countless treatments of all sorts to try to figure this out, none of which had any impact and suddenly this chiropractor changed everything. Others have reported specific improvement to their nasal cavities after AtlasPROfilax - but, we'll have to wait and see whether it has an positive effect for me.

I have had one audiologist test my hearing soon after this started, which showed minor hearing loss at high frequencies, though I don't know whether it went up to the kHz you describe. That caused all the ENTs to throw their hands up and say that's that, all done. Of course, hearing loss doesn't explain the wealth of other symptoms that have accompanied my tinnitus, including audiological symptoms like the loss of acoustic reflex. But, the ENTs all but refused to continue to help me treat any of my symptoms - tinnitus is a real conversation killer for ENTs, it turns out. Who knows, maybe my tinnitus is hearing loss related, but came on coincidentally at the same time as all of these other health events and symptoms. I think they are all related and a resolution to all is possible, but only time will tell. So far, all the improvement I've experienced, to the neck, nasal cavities and tinnitus, have all progressed in tandem. I'll certainly be happy to relieve some of these symptoms, whether that includes the tinnitus or not.

 

[InfiniteLoop]

Yeah, I don't understand either why there is a connection between your spine and your nasal cavity, but apparently there is. After my first chiropractic adjustment, my nasal cavities started to move again, and I could hear fluid moving in new ways and my soft palate was engaging in a way it hadn't in years. My best working theory is that the atlas misalignment contributes to poor posture and tension in the neck and jaw, which impacts how the nasal cavity works - whether it's about mucus circulation or inflammation/blockages, I don't know. But I've had countless treatments of all sorts to try to figure this out, none of which had any impact and suddenly this chiropractor changed everything. Others have reported specific improvement to their nasal cavities after AtlasPROfilax - but, we'll have to wait and see whether it has an positive effect for me.

I have had one audiologist test my hearing soon after this started, which showed minor hearing loss at high frequencies, though I don't know whether it went up to the kHz you describe. That caused all the ENTs to throw their hands up and say that's that, all done. Of course, hearing loss doesn't explain the wealth of other symptoms that have accompanied my tinnitus, including audiological symptoms like the loss of acoustic reflex. But, the ENTs all but refused to continue to help me treat any of my symptoms - tinnitus is a real conversation killer for ENTs, it turns out. Who knows, maybe my tinnitus is hearing loss related, but came on coincidentally at the same time as all of these other health events and symptoms. I think they are all related and a resolution to all is possible, but only time will tell. So far, all the improvement I've experienced, to the neck, nasal cavities and tinnitus, have all progressed in tandem. I'll certainly be happy to relieve some of these symptoms, whether that includes the tinnitus or not.

Note that one of the usual tinnitus delusions is the search of a root cause that can be fixed.

We all secretly wish that we have some other health problem that magically will solve the noise in our heads. Just be aware of that thinking bias, and try to objective about when to stop or continue treatments.

I do have high frequency hearing loss as you do, and I have severe tinnitus. I went through periods that I thought that the root cause had to be something else, time proved me wrong.

 

[hartstreet]

Note that one of the usual tinnitus delusions is the search of a root cause that can be fixed.

We all secretly wish that we have some other health problem that magically will solve the noise in our heads. Just be aware of that thinking bias, and try to objective about when to stop or continue treatments.

I do have high frequency hearing loss as you do, and I have severe tinnitus. I went through periods that I thought that the root cause had to be something else, time proved me wrong.

Yes, it's very good advice to make sure you're chasing objective factors. I'm sorry to hear that was your experience and I wish you the best.

 

[LilSass]

Hi again @hartstreet!

I would say that we've both found pretty much everything there is on the AtlasPROfilax treatment. My appointment isn't until January, but I am a bit skeptical as the practitioner who offers it is a Naturopath, not a Chiro, so that concerns me a bit. He also doesn't seem to have much of an online presence, so I'm going to contact the owner of the clinic that he runs out of just to ensure there have been no dissatisfied patients. It seems the only thing we can rely on are testimonials, there's no clear scientific evidence. I'm okay with that, I just need to know the worst case scenario - the risk seems low to non-existent (skeptical) but I'm pretty sure if someone got really f***ed up, there would be evidence on the internet.
I also found a Chiro who uses the Atlas Orthogonal, so I'm going to have a consultation with him next week.

I've been seeing my current UCC for over a year now, and the results have not been long lasting (I did have two really great months before I got the second vax, so I'm not really sure what happened, inflammation? Can't be sure the success is attributable to adjustments). I just really need to know at this point if I'm barking up the wrong tree and stop wasting my time and money.

Lastly, I've made an appointment to obtain a prescription of 10 mg Amitriptyline as a preventative. It's not what I really want, I've been putting it off for so long, but I cannot live with this pain/migraine any longer. Nothing I've done so far has changed my tinnitus, no spikes, just the same pattern of one day quiet, one day moderate, one day loud, etc. (I have variable tinnitus). I know it's my right ear that's messed up, but when it's louder it seems to be bilateral.

Anyway, I'll keep you posted on my journey - I pray that I get some answers/relief.

Best of luck to you!
Sarah