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

[Uklawyer]

@IntotheBlue03 - I can't comment too much on most of the above. I hope you get to the bottom of it and that you fully recover.

Just a quick question - your tinnitus is now intermittent and pulsatile, whereas it was neither previously?

 

[Greg Sacramento]

@IntotheBlue03, early within our discussions, I had expected a blow to the head and then you mentioned a TBI.

With this, a need for imaging angiographic variables and measurement ratio of the transverse sinus, sigmoid sinus and internal jugular vein, jugular bulb heigh, division point of the superior sagittal sinus.

However, I thought more presence would have been seen and with more emphasis with occipital sinus, visualization of the mastoid emissary vein; and presence of the suboccipital venous plexus. Reasons is I don't see you having difficulty concentrating and slowness of thoughts.

Mentioned that I thought you had alar ligament concerns before digital motion X-rays and TBI would be reason for this and other cervical mentions.

I think the summary report is well noted including clinical conclusion lines 3) and 5).

Has your vision improved?

Did you have any hoarseness after your stellate ganglion block?

 

[IntotheBlue03]

@IntotheBlue03 - I can't comment too much on most of the above. I hope you get to the bottom of it and that you fully recover.

Just a quick question - your tinnitus is now intermittent and pulsatile, whereas it was neither previously?

Hey @Uklawyer, so we're diving into my health issues before my catastrophic tonal tinnitus but I've always had intermittent pulsatile tinnitus along with very strange symptoms (heartbeat that can be felt all over my body but particularly throughout my head, neck and chest, POTS diagnosis, etc).

I've long suspected that whatever I've been dealing with in the past is driving this current nightmare I am dealing with. I've come across another young lady actually in my state with very similar symptoms and she will be having stent surgery for bilateral venous stenosis next month. I hope I'm not in that camp but, if it resolves all of her symptoms that include similar visual and cognitive symptoms as mine, I will consider a consult.

So to answer your question, my tonal tinnitus is constant but low (a 1) and my pulsatile tinnitus is intermittent and coincides with those other strange symptoms.

 

[IntotheBlue03]

@IntotheBlue03, early within our discussions, I had expected a blow to the head and then you mentioned a TBI.

With this, a need for imaging angiographic variables and measurement ratio of the transverse sinus, sigmoid sinus and internal jugular vein, jugular bulb heigh, division point of the superior sagittal sinus.

However, I thought more presence would have been seen and with more emphasis with occipital sinus, visualization of the mastoid emissary vein; and presence of the suboccipital venous plexus. Reasons is I don't see you having difficulty concentrating and slowness of thoughts.

Mentioned that I thought you had alar ligament concerns before digital motion X-rays and TBI would be reason for this and other cervical mentions.

I think the summary report is well noted including clinical conclusion lines 3) and 5).

Has your vision improved?

Did you have any hoarseness after your stellate ganglion block?

Hi @Greg Sacramento, thank you for always getting back to me so quickly. I apologize that my pathology is so murky, it is the conundrum that I am currently trying to unravel.

I had a concussion 2 decades ago but was never advised of a TBI. My Neurofeedback doctor who prepared the MyNeurva report identified the TBI on the 2 qEEGs he performed during the month of March. His analysis has been spot on in identifying my PTSD and location of my tinnitus, and he even mentioned that my visual problems start in my left eye. He identified all of this without input from me and brain scan only which was very impressive. I have to be honest as I am not sure if the SGB caused me a TBI or exacerbated an underlying health issue, what I can tell you is I've had increasing visual dysfunction since then and cognitive issues (I cannot for example watch television or read without great difficulty and working is increasingly difficult). My visual symptoms include feeling like I am in a fishbowl with tunnel vision and I am unable to focus on anything for more than a few seconds.

Needless to say the visual and cognitive symptoms are very distressing and conventional medicine has been no help. I've been attempting to unravel which came first - longstanding craniocervical instability that has led to further destabilization and IIH/TBI or vice versa. The SGB is now unfortunately a wildcard.

What I can confirm for sure is that these symptoms have been progressing week to week, which leads me to believe my CCI is a current factor.

In addition I feel better when lying down or with less movement. My vision is not improving unfortunately. My voice was not hoarse after the SGB, I appeared to have the standard "success" side effects though with droopy eye, etc.

Is there any doctor you recommend in particular to review my case? I have a consult with a neurosurgeon but have also reached out to a Kenneth Liu, MD, to review my MRI as a second opinion. I've been seeking neuro-radiologists as well. As I've come to find out, neurologists are a bigger disappointment than ENTs.

Here's a prolotherapy video that helps back the CCI theory:

 

[Greg Sacramento]

@IntotheBlue03, I don't see any notation in CT or MRI that would reference to a TBI or IIH. SGB is a wildcard - timing is strange - but I really don't see this as a connection to sight issues. CCI and emotional stress in my opinion does has a place.

Findings not seen in MRI Head or CT:

• No acute intracranial hemorrhage, focal mass nor midline shift is present.
• Opacities of unknown etiology are not noted in the optic canals secondary to traumatic osculation.
• Ventricles and extra-axial caf spaces are not enlarged secondary to parenchymal volume loss.
• No hypodensity in the periventricular and subcortical and white matter has no mention.

So, no chronic microvascular ischemic changes exist.
This stuff is so easy to note and has importance to eyes.

I recently loss left eyesight due to a hypertension crisis (not a stroke) which is a quick and very brief rise in blood pressure. You have to be old for this to happen.

I can remember one of our Interventional Radiologist firing a tech because he wasn't giving proper care to a whiplash patient with CCI, damaged alar ligaments and jaw. The patient experienced a panic emotional situation and temporary loss vision in left eye and then got tunnel vision while in hospital, but with therapy and glasses that problem was solved. Tinnitus resolved. Alar ligaments healed, but a Philadelphia brace was needed to help with healing. Neck will always have some soreness, but hopefully livable. Some jaw pain probably exists to this day. Seen all this many times.

Let me know on second opinions.

I've come to find out, neurologists are a bigger disappointment than ENTs.

Agree.

 

[Ela Stefan]

Adding normal Acoustic Reflex Test and normal Auditory Brain Stem Response Test in my process of elimination and case building for cervical somatic tinnitus.

What does Auditory Brain Stem measure please?

Hi @Jerad, I hope you're doing ok these days. It's Neurofeedback which basically is a retraining/rewiring of the brain similar to neuroplasticity for tinnitus. I did a qEEG and it revealed that my brain is producing the hyperactive/hyper vigilant brain waves in PTSD while suppressing the calming brain waves. It's been great for me because it's done at home remotely and you're guided over Zoom with the doctor and you're basically watching videos while cues are sent to your brain through those videos. I even was able to do the qEEG at home. Could be placebo but I have felt slightly calmer after 2 sessions.

Do you do your Neurofeedback sessions at home? Is that even possible? For all I knew, Neurofeedback implies some electrodes being held on your skull whilst the program records your brain waves and give a sort of feedback, calming the overreacting brain areas.

Am I wrong? It is wonderful that it can be done over Zoom consultation, I never knew that. Thank you!

 

[Ela Stefan]

Hey @Uklawyer -- Great post. Just wanted to mention that I took Clonazepam regularly for about 3 years about 20 years ago. I then went through a somewhat difficult tapering process lasting about 15 months. I've discovered a few things since that time that I wish I'd known about that I feel would have helped me through that tapering process.

One of these was a micro-current device called Alpha-Stim. Another very helpful one was mHBOT, which turned out to be a turning point for me in finally being able to calm my neurological system post tinnitus onset. The third one is one that I just discovered recently, and fortunately, is very inexpensive and easy to try. Namely, poppy seeds. They contain small amounts of a wide variety of opioids, and I read that making a tea out of them can have a calming effect. I tried this 3-4 years ago, and did notice it helped very modestly--at times.

I discovered more recently that mixing 1-2 oz. of poppy seeds in some yogert before going to bed at night helps me sleep much better, and allows me to wake up feeling relaxed in the morning. In fact, when I wake in the morning and first become aware of my tinnitus, my reaction is more one of indifference than anything else. It also feels like my overall tinnitus has gone down a notch since I started this regimen about a month ago. Not only do I think this is safer than using any type of benzo, but is more effective as well.

Hi, Lane! I'm also at the 3-year mark with my Clonazepam. I want to taper off. Could getting an Alpha-Stim device help with this? I also suffer from chronic severe tinnitus. I wanted to try mHBOT a lot but my unknowing doctor back then said after the 2-month mark it will not help. I'm 3 years in so probably using it now wouldn't do much of a difference.

Can I ask how much Clonazepam did you take back then, for you need that much time to taper off please? I take it for sleep only and got used to it I guess. It gave me tinnitus relief for 1 month maybe in the beginning! Thank you!

 

[IntotheBlue03]

What does Auditory Brain Stem measure please?

Do you do your Neurofeedback sessions at home? Is that even possible? For all I knew, Neurofeedback implies some electrodes being held on your skull whilst the program records your brain waves and give a sort of feedback, calming the overreacting brain areas.

Am I wrong? It is wonderful that it can be done over Zoom consultation, I never knew that. Thank you!

Hi Ela,

I believe ABR is supposed to measure any neuro damage to that area.

Yes, I am doing Neurofeedback at home remotely through MyNeurva. They have been fantastic but it is not cheap (cost me $5000 for 20 sessions). I started it for treating severe PTSD which was very helpful because I couldn't leave my house at the time. They send everything you need to perform the sessions at home remotely. I can't say it was helpful for tinnitus because my tinnitus was pretty low when I started the program.

Hope that helps.

 

[Ela Stefan]

Hi Ela,

I believe ABR is supposed to measure any neuro damage to that area.

Yes, I am doing Neurofeedback at home remotely through MyNeurva. They have been fantastic but it is not cheap (cost me $5000 for 20 sessions). I started it for treating severe PTSD which was very helpful because I couldn't leave my house at the time. They send everything you need to perform the sessions at home remotely. I can't say it was helpful for tinnitus because my tinnitus was pretty low when I started the program.

Hope that helps.

Thank you so much for your answer.

May I ask, when doing the neurofeedback sessions, do you have to listen to some kind of music while watching relaxing images?

I'm doing it here with a psychologist and I keep trying to tell her that a specific kind of music, with different frequencies, is bothering me. Or a certain volume. She doesn't seem to understand and keep saying I have to desensitize myself and not being afraid of a specific kind of music that I listen to. On the other hand, I know it is my amygdala at work, because I don't have sensitivity to noise and I measured it with an app, it is around 50 dB. But I do have reactivity to noise and my tinnitus as of now fluctuates on its own. So it is hard to tell when a frequency or volume is bad for me. I learned to go with my gut. Just want to protect myself!

Just can't relax with music anymore, I watch TV at a reasonable volume but avoid music. I think it was an unconscious way of protecting myself and I just can't enjoy it anymore. Also my thinking is that continuous sound can harm oneself, opposite to talking for example, where there is pause between the words.

Anyway, feeling uncomfortable must not be good for the session. I just need a way to make her understand that. She said music, sound, is necessary in a neurofeedback session. I knew you did it and wanted to ask how did you manage it. Thanks again.

Here to better days for us!

 

[IntotheBlue03]

Hi all,

Back with more updates to document my case.

I had a vestibular assessment with an expert in our area who specializes in vestibular therapy. Very important to note because I had been doing vestibular therapy with a local physical therapist who does not specialize in this and I have had minimal direction and zero improvement, nor was my evaluation very comprehensive.

This vestibular therapist had me do eyes open/closed feet together tests on the ground and pillow and I failed those tests miserably. I could not hold the allotted 30 seconds stand still and I'd sway to the right which is where my tinnitus started and remains. It was determined I have vestibular hypofunction and that my visual system is most likely compensating for this.

In reviewing my history I had intermittent tinnitus in my right ear for 2 years prior to the Big Bang event on 12/14/21. I do recall visual symptoms (difficulty scrolling through my phone, eye movements when eyes are closed) as early as last Fall even though they were minimum. It is the vestibular therapist's theory that compensation began as early as then and then fully took over in March 2022 when my debilitating symptoms began. I wanted to note this for other vestibular disorders because even though I've been diagnosed with a Vestibular Ocular Reflex Impairment I also have these symptoms at rest so that I am unable to watch TV or look at screens long. At this point my vestibular therapist is now talking to my ENT and she works regularly with my Vision Therapy Office/Neuro-Optometrist so I am hoping I finally have the multidisciplinary team together to fully address this deficit and restore my visual and vestibular systems as much as possible.

I also must note that my Neurofeedback doctor believes that this pattern of TBI is older than when my debilitating symptoms began on 12/14/21. At this point I do not know the origin of pathology but will be working to identify the root cause as quickly as possible. I suspect still an autoimmune cause or craniocervical instability as the root that could have spiraled into everything else I'm experiencing, even potential IIH/Transverse Venous Sinus Stenosis.

Also interesting to note as I have been MicroDosing for 2 weeks-at which point I was advised I might notice some improvement if any. As of yesterday the severe eye strain I have been experiencing has reduced 75% and I physically felt my eyes focusing together better (in "general" I was diagnosed with Binocular Vision Dysfunction/Post Trauma Vision Syndrome) so it's been identified in FCOVD exams that my eyes are having difficulties focusing and teaming which could explain almost all of my visual difficulties. This resulted in a great reduction of head pressure and cog fog and a reduction in focusing issues.

I will continue to report my experience with all treatment modalities including vision therapy, vestibular therapy, PRP/Prolotherapy Low Dose Naltrexone and MicroDosing Psilocybin.

Also interesting to report Prednisone worked great in reducing my visual symptoms by 75% early on in this condition but obviously that cannot be a longterm treatment. I believe that is because of this being vestibular related.

This condition is still very distressing despite the bit of relief I've experienced this weekend so any thoughts and prayers are appreciated. Hoping the chronicling can help others in the future in complex despairing health situations.

 

[IntotheBlue03]

Are you still interested in Dr. Shore's treatment? Isn't your tinnitus under control now?

You are too kind @Jerad, thank you! That helped a lot. My tinnitus is under control, but it's still present at a "1" so in case it comes roaring back I like to keep tabs. I honestly don't know how much longer I'm going to be around with this eye condition though: Hoping for a heart attack in my sleep.

 

[Jerad]

You are too kind @Jerad, thank you! That helped a lot. My tinnitus is under control, but it's still present at a "1" so in case it comes roaring back I like to keep tabs. I honestly don't know how much longer I'm going to be around with this eye condition though: Hoping for a heart attack in my sleep.

I understand your deep despair, @IntotheBlue03. It's sad that these debilitating conditions make death seem so appealing. But ya, I know exactly what you mean and I feel that way sometimes, too. Hope you improve soon. I'm glad your tinnitus is doing better. Mine is still severe and electrical; feels like currents running through my head with the zaps, too. Desperately trying to find a solution.

 

[Uklawyer]

Hey @IntotheBlue03,

Keep strong. You'll get through this. I might need you to hook me up with your Mushroom connect one of these days.

 

[IntotheBlue03]

Keep strong. You'll get through this.

Hope so. It is killing me daily but if it's truly TBI, it should heal with this protocol.

 

[Cbush]

You are too kind @Jerad, thank you! That helped a lot. My tinnitus is under control, but it's still present at a "1" so in case it comes roaring back I like to keep tabs. I honestly don't know how much longer I'm going to be around with this eye condition though: Hoping for a heart attack in my sleep.

I'm sorry if I missed something. What did you do to get your tinnitus to a "1"?

 

[IntotheBlue03]

I'm sorry if I missed something. What did you do to get your tinnitus to a "1"?

Honestly I don't know but I'd take the severe tinnitus over this disabling horrific eye condition any day. I started Low Dose Naltrexone 2 months ago.

 

[Gb3]

I'm sorry if I missed something. What did you do to get your tinnitus to a "1"?

She has had tinnitus for a couple of months. For a lot of people it goes away.

 

[IntotheBlue03]

She has had tinnitus for a couple of months. For a lot of people it goes away.

Instead of going away, it morphed into a neurological monster that is now destroying my vision in a slow torturous methodical way. I would take the tinnitus back in an instant, believe it or not.

 

[Gb3]

Instead of going away, it morphed into a neurological monster that is now destroying my vision in a slow torturous methodical way. I would take the tinnitus back in an instant, believe it or not.

I'm sorry you're experiencing something else.

Did the doctors tell you the tinnitus changed into the visual symptoms or are they two different things?

 

[TomBradyGOAT]

Instead of going away, it morphed into a neurological monster that is now destroying my vision in a slow torturous methodical way. I would take the tinnitus back in an instant, believe it or not.

Answer it or not, it is up to you. Have you before tinnitus and all these symptoms, had anxiety, maybe sometimes debilitating?

 

[IntotheBlue03]

Answer it or not, it is up to you. Have you before tinnitus and all these symptoms, had anxiety, maybe sometimes debilitating?

Nope, I never knew what a panic attack or severe anxiety was. This has been a mind altering experience, no pun intended.

 

[IntotheBlue03]

I'm sorry you're experiencing something else.

Did the doctors tell you the tinnitus changed into the visual symptoms or are they two different things?

Thank you. Nope, no answers after almost 5 months of evolving torture. I am so tired of the I don't knows, conventional medicine has failed me and this has turned into a long drawn out elimination process. Clean brain MRI and CT scans along with bloodwork and neurological/ENT/neuro-ophthalmology exams. Only clue I have now is a TBI that keeps showing up on multiple qEEGs and confirmation from neuro-ophthalmology exams that this is head trauma related. After dozens of worthless doctors I finally have a few good doctors I am dealing with including an ENT, neurologist, vestibular therapist and 2 neuro-optometrists and they're communicating with each other as well.

I'm having a battery of tests that I've been waiting on at a top notch ENT next week and today I got fitted for prism/progressive glasses as this neuro-optometrist feels I'm suffering from severe accommodative spasm. I hope she's right. It's also possible that my ocular system is compensating for a damaged vestibular system. Either way, this torture has to end.

 

[Mathew Gould]

Thank you. Nope, no answers after almost 5 months of evolving torture. I am so tired of the I don't knows, conventional medicine has failed me and this has turned into a long drawn out elimination process. Clean brain MRI and CT scans along with bloodwork and neurological/ENT/neuro-ophthalmology exams. Only clue I have now is a TBI that keeps showing up on multiple qEEGs and confirmation from neuro-ophthalmology exams that this is head trauma related. After dozens of worthless doctors I finally have a few good doctors I am dealing with including an ENT, neurologist, vestibular therapist and 2 neuro-optometrists and they're communicating with each other as well.

I'm having a battery of tests that I've been waiting on at a top notch ENT next week and today I got fitted for prism/progressive glasses as this neuro-optometrist feels I'm suffering from severe accommodative spasm. I hope she's right. It's also possible that my ocular system is compensating for a damaged vestibular system. Either way, this torture has to end.

Does your neck or jaw feel messed up or jaw? Have you done any physical therapy?

 

[Uklawyer]

@IntotheBlue03, any news? Hope something is helping you out.

Best.

 

[IntotheBlue03]

@IntotheBlue03, any news? Hope something is helping you out.

Best.

Hey @Uklawyer.

So nice to hear from you. Unfortunately, no, I am severely struggling every second of the day and hoping something will bring me relief. Really worried at this point this was all one long neurological event that occurred either because of my upper cervical injuries or something insidious and autoimmune (probably a cross of both). At this point I am doing vision therapy, vestibular therapy, Neurofeedback, syntonics, NUCCA and Prolotherapy/PRP. I've been experiencing blow after blow with each doctor but today I feel a little more confident after having an appt with one of the top neuro optometrists on the East Coast of the US. He seemed to really get my visual issues without me having to explain much so let's hope I get some relief in the next couple weeks. He's in touch with my ENT who is also a top doctor and both of them helped another person with similar issues to mine completely recover and that was 20 years ago! This really looks to be central in nature as far as the vestibular and visual issues go and it's very probable that upper cervical instability caused me brain damage. I'm also still microdosing and have upped that to 200 mg every other day/2days so I will report back on that as well as I have some good sources and know of another TBI survivor who had 3 TBIs (2 whiplash related) who also completely recovered from his visual and cognitive symptoms.

I can say at this point my eye strain has significantly lessened, reading is a little bit easier and cognitive function is better. The gentleman who had the 3 TBIs described it perfectly because when this first happened I felt as if there was a screwdriver behind my eye making everything around me very crooked, that has since been "removed" as of a few weeks ago and things are a little less crooked.

Keep me in your prayers please.

How are you doing?

 

[IntotheBlue03]

Does your neck or jaw feel messed up or jaw? Have you done any physical therapy?

Hi Matt,

I've done TONS of physical therapy over the years. What I need is upper cervical PRP, which has been delayed another 2 months to my dismay because a worthless Neuro Ophthalmologist ran 2 hours behind and cost me my PRP appt just so she could do repeat tests that I had just done at another office the week before. Very frustrating. Nothing physical therapy, Craniosacral or even NUCCA will hold without PRP. I have severe ligament damage there that was diagnosed as a CCI by Regenexx Doc Chris Centeno. I will probably be flying out there as well at some point to have his treatment to stabilize the anterior ligaments if I can just get my visual symptoms more stabilized.

 

[Uklawyer]

Hello @IntotheBlue03,

I am sorry to read that you are still having difficulties. It's good to know that you have found people that you have confidence in and that they are coordinating with one another - and that you know of others that have been successfully treated with symptoms similar to your own. An amelioration of symptoms is also a very positive sign. Hopefully you will get there in the end.

I got COVID-19, which seems to linger a long time - coughing and breathing is a bit laboured. I also got my CPAP machine for my recently-diagnosed severe obstructive sleep apnea. I am trying to get used to using it at night but it's a bit tricky when you are wearing a mask and are connected up to a machine (and have to keep you mouth shut as much as possible and breathe in through your nose - it is a nose mask/pillow that I have). The dream is that the CPAP works, I sleep well, have lots more energy AND tinnitus resolves as a result. For now, at least I have the noise of the CPAP machine to take my mind off the tinnitus noise for now.

Let us pray that one day all is better. I shall do so for you and everyone else on here.

Best wishes and keep us posted.

 

[IntotheBlue03]

Hello All,

Still suffering but for anyone who may find this thread, I just want to re-emphasize the value of having a qEEG done when you are unsure of what is causing your neurological issues.

At this point I know for sure this is brain damage - the question is was it craniocervical instability related or metabolic encephalopathy. It is highly probable that I could have suffered a W.E. and was NEVER screened for this by any worthless doctor. The precious time these incompetent HCPs wasted is a price I will be paying for the rest of my life. I've now had 5 consecutive qEEGs across 2 different clinicians who did not know each other and all have confirmed TBI/M.E. as potential causes of brain damage along with vertical nystagmus. Not one optical or neuro HCP picked this up on their eye exams. Not one other HCP has any diagnosis or path forward for me, just an endless mantra of "we don't know" and the bottomless pit of ruling out other unrelated unlikely conditions. I have once again suffered needlessly due to conventional medicine incompetence.

At this point I have seen over 3 dozen doctors and am hoping a top doctor in the acquired nystagmus field can help with some relief.

 

[Marshall]

Hello All,

Still suffering but for anyone who may find this thread, I just want to re-emphasize the value of having a qEEG done when you are unsure of what is causing your neurological issues.

At this point I know for sure this is brain damage - the question is was it craniocervical instability related or metabolic encephalopathy. It is highly probable that I could have suffered a W.E. and was NEVER screened for this by any worthless doctor. The precious time these incompetent HCPs wasted is a price I will be paying for the rest of my life. I've now had 5 consecutive qEEGs across 2 different clinicians who did not know each other and all have confirmed TBI/M.E. as potential causes of brain damage along with vertical nystagmus. Not one optical or neuro HCP picked this up on their eye exams. Not one other HCP has any diagnosis or path forward for me, just an endless mantra of "we don't know" and the bottomless pit of ruling out other unrelated unlikely conditions. I have once again suffered needlessly due to conventional medicine incompetence.

At this point I have seen over 3 dozen doctors and am hoping a top doctor in the acquired nystagmus field can help with some relief.

I'm so sorry you've been failed...

 

[Uklawyer]

@IntotheBlue03, haven't seen you for a while. How are things?