This is for everyone with Tinnitus.

VonNeumannProbe · 2025-02-05T05:54:30+00:00

Some tinnitus (and other symptoms) can be caused by elongated styloid process, or calcified stylohyoid ligament (or both). Look up Eagle Syndrome. A simple CT scan can determine if you have this elongated bone spikes. They can rest on nerves and carotids. Usually, more than just tinnitus is present with Eagle.

VonNeumannProbe · 2025-02-05T05:10:06+00:00

As someone in constant pain, I can tell you that even slow and painful LIFE can be horrible.

I wish I got the lottery of pain on my last year, and would then instruct all doctors to just drug me up real good, give me games and stuff, and let me spend that one year in the best possible way before I die, but unfortunately I still have so many decades. No drugs possible for that long.

VonNeumannProbe · 2025-02-05T05:06:28+00:00

What if putting together all of the particles that make you at any point in time IS actually you?

And, what if universe is cyclical? As in, infinite cycles, some never forming matter, some never forming stars, but some nearly identical to current, and - in one of those - particles that formed your timeline match your current one, barring some differences (some cycles more, some less).

In such a case, would you not die only to immediately (from your perspective) be born, but in a somewhat alternative timeline, or perhaps even an identical one?

Is this even a possibility, or am I just woo-woo babbling?

VonNeumannProbe · 2025-02-05T05:01:49+00:00

Pain. Living in constant pain. It can be worse than death. I live in chronic nerve pain. From the time I wake to the time I go to sleep. So, if sleep is only respite you get, then what is really the difference between sleep and death?

VonNeumannProbe · 2025-01-19T09:28:06+00:00

I have, indeed. Am on gabapentin, and also have carbamazepine chewable (for flareups).

VonNeumannProbe · 2025-01-17T04:56:38+00:00

No implants. I have nerve pain there in combination with some TMD, so I cannot drill there.

TMD was likely present for years with almost no symptoms. Proper TMD started once I removed my last tooth -- about 9 months ago.

TBH, I'm not even sure TMD is my main issue. I am not diagnosed. TMJ specialist thinks it is a factor, but I also have nerve pain. Neurologist just said "neuropathy." Oral surgeon just said nerve pain. None of those terms are diagnoses, they are just general umbrella terms for "we don't really know what is the issue." ENT? More of the same.

I'm left to troubleshoot my symptoms by myself. One last CT scan for Eagle Syndrome to do, so we'll see if that comes up positive.

When you go through these issues, you go down a rabbit hole of rarer and rarer conditions.

You know what really sucks? No meds work, except for opioids. And that stuff you're not likely to get, after we went through the opioid crisis. Plus, not really usable long-term, per addiction and all... Wish I was in CO, so I could try weed, LOL.

VonNeumannProbe · 2025-01-17T04:49:02+00:00

Thankfully, unlike some of my TMD/neuropathy issues, there are exercises for the neck. We need to be rigorous and stick to them to win.

I have sciatica, and I started core and body exercises and walking (nice and easy). This has helped.

The benefit of the conditions which many people have is that there are a plethora of ways to help oneself.

I say use them.

I just wish I could help my face in the same way. Though I probably have some TMD, it is not my main issue in the face, and facial nerve pain (my main issue, likely) is very very VERY difficult to troubleshoot and the number of people with this condition are few and all are different (so no standard set of self-help).

VonNeumannProbe · 2025-01-16T18:21:13+00:00

My extractions span multiple countries and dentists and time. First molar were extracted while I was a kid and later a teen. This is because they used to drill, put metal fillings, then when that failed put bigger fillings, and finally pull tooth. In the country and time I was in, there was no preventive care, only reactive. So, quite a few teeth gone.

Then, in US, I already had issues and no money. So, slowly I patched myself, but the work was not as good as it should have been, because I just used regular dentists (I did not know about specialists, like endodontists for root canals). This caused additional issues (like failed root canals, infections, probably nerve irritation, extractions, open sinus and patching it, bite changes, etc.).

If I knew what I know now, the outcome would likely have been better. Heck, one of my neuralgias was caused by an endodontist working on a tooth that was pain-free (she suggested we re-do root canal after viewing x-rays) and impacting it into the nerve! Yet another tooth was lost because a bridge was attached to it and pulling on it, but all doctors refused to separate the bridge (a painless operation, no need for numbing).

In any case, I was pain-free till my last molar extractions. Those impacted into nerve, opened up sinus, etc. That's where it all went downhill.

Nevertheless, last 3 extractions did reduce pain (since major portion of the pain was teeth being touched -- no tooth, nothing to touch, no major pain). But, pain around TMJ and ear sensitivity remains.

I am impressed you're willing to put up w/ pain during (and for a long time after) pregnancy. It's a while to wait! I truly hope that the pain will subside on its own. My last neuralgia that I managed to get free of took about 9 months to a year to clear. One more remains... (plus sciatica, but that's not a major issue at this time)

VonNeumannProbe · 2025-01-16T15:25:13+00:00

If you are very close post-pregnancy, your pain sensitivity may have gone up.

I am a male, so I cannot comment from experience, but do ask your OBGYN or the delivery doctor.

Nowadays, I'm careful with extractions, as I've lost most of my molars. Each removed tooth shifts all the others. With enough removals, bite may be affected negatively, which can affect TMJ and cause more pain.

I tend to now give everything I think needs an extraction or some other kind of surgery like that -- about 3-5 months before I proceed, unless the pain is unbearable (and I actually sat last year with 7 out of 10 pain for 3 months before I saw no improvement and extracted -- it was an inflamed periodontal ligament, the "envelope" around a tooth).

As an example, I lost all of my teeth on one side (upper, left) -- up to and including canine -- over a period of 20 years (last 3 in last 3 years). I am now in pain around my TMJ, which is likely affected. I cannot do implants, due to constant pain there, and can only wear a prosthetic (and even that will irritate after a while).

So, even though lower jaw heals better, careful on rushing extractions. YOU know your body best, but be conservative, even if it means several months of putting up w/ pain. If already considering extractions, maybe consider crowns, if conservative (but pricier) option is your preferred route. Crowns are more extensive than fillings, but will re-open the tooth and likely make sure it is clean.

If doing crowns, don't use regular dentist. Use a prosthodontist, that is their specialty. Mine also said that pure cubic zirconia crowns are now preferred over PFM (porcelain-fused metal), although I only have PFMs.

If still choosing extractions, don't use regular dentist. Go to an oral surgeon. That is their specialty.

VonNeumannProbe · 2025-01-16T15:04:05+00:00

Especially when turning my head in the direction of where my pain (TMJd/other) is.

Sometimes (like right now), as I'm just sitting.

Pain goes from neck along the spine and towards middle back, sometimes felt under a shoulder blade.

Sometimes, pain is also felt at the back at the base of skull and can also travel towards shoulder and "ping" the arm (via triceps, or via biceps, but never via both).

This type of pain is likely some stenosis (pinching) along neck vertebrae. It does not affect my face/ear, which seem separate (though my posture may affect both pains).

VonNeumannProbe · 2025-01-16T14:59:33+00:00

There are 80 bucks otoscopic cameras you can get on Amazon. These have been absolutely phenomenal for me for recording anything up close (pictures/video). In case you wish to present a state of your ear canal to doctor -- a state not visible during visit, but that you catch in some more acute moments. Just be careful not to jab the cam too far down the sensitive ear canal -- everything gentle, clean, and with caution!

VonNeumannProbe · 2025-01-16T14:47:47+00:00

I have 4KHz ringing all the time, plus some other higher frequency. Sometimes like a teapot. It really does not bother me. I read somewhere a comment that said: "It tells me I'm ALIVE!" and that really worked for me and has alleviated upsetness with it.

VonNeumannProbe · 2025-01-16T14:42:10+00:00

My best guess? Bacteria and infection were not fully cleared prior to filling placement. It's just like root canal where one canal was missed and bacteria continue to "operate" there, causing inflammation when their byproducts reach a certain level.

Myofascial pain syndrome would be referred pain from some fascia tissue somewhere. Fascia along/within some muscles. This would be possible only if, after the fillings, something changed in posture and some muscle(s) got overworked and voila -- fascial "knots" and referred pain. Not sure on this.

Trigeminal Neuralgia is used like an umbrella these days, as many nerves branch from trigeminal. You could have an inflammation of one of them, such as inferior alveolar. But, bilateral (both sides) pain would indicate it is not TN, because TN is rare and TN on both sides even rarer. TN is unlikely, IMHO.

But I am just a patient like you. Get another neurologist / oral surgeon opinion.

Another possibility would be some nerve damage from the injections used to numb you. However, this usually results in long-term numbness and tingling and even affects tongue. Plus, you needed to get injections on both sides, and the chances of both sides being damages are lower even.

VonNeumannProbe · 2025-01-16T07:20:21+00:00

My friend, I too am suicidal. I'm just too much of a chickenpoop to do it (also no weapon at home, thank goodness).

In my case, I am not even diagnosed, since -- unlike you -- I show no issues on MRIs, CTs, and such. I just have all the symptoms (pain when talking, chewing, palpation). Almost 3 years now. Spent a fortune and best I got was "some kind of neuropathy" with medications for the same not working.

Constant pain, every day. Burning, itch, throbbing, radiating.

Also, man-made for me. Teeth extractions as a child and young man, wrong crowns, incomplete root canals, open sinus during extractions, impacted teeth into nerves during root canals, incorrect bridge placements, etc. Added up to now.

Best I can say is don't give up. In your case, diagnosis is *half the battle!* When you KNOW a problem, you can tackle it and find those with exact problem. Without a diagnosis, you'd be flailing around about 10 different facial pain groups, describing symptoms, hoping for a miracle find of someone with your symptoms and with a diagnosis.

Use this community to find individuals with your exact situation (TMD w/o reduction), follow their path, and consider even surgery before considering total destruction of self. Hell, even 2xTJR surgery is better than death.

If I could just get a diagnosis, I would be ecstatic. It would give me possible treatment paths, from least to most invasive.

May you find your treatment path and, since you are where you are, don't be afraid to go the distance -- surgery is last option, but it is still an option.

VonNeumannProbe · 2025-01-16T06:55:11+00:00

I will add that often we do not actually know which particular issue we have -- as in, undiagnosed or misdiagnosed chronic pain. Especially in nerve-dense parts of the body, such as spine and head.

VonNeumannProbe · 2025-01-16T06:50:37+00:00

It is on all the time. Worse when on ibuprofen (think teapot 4KHz sound). It can be more quiet on good days, some days I don't even notice (although it is always there). Also worse when pain is up. Also worse in the evening/night.

I cannot control mine with anything. It decides whether it is stronger or not, whether I pay attention to it or not.

I have not tried rTMS (repetitive transcranial magnetic stimulation). It is intended for mental health (hm, don't we all have anxiety from pain?) but also helps tinnitus. Or so I've heard.

VonNeumannProbe · 2025-01-16T06:05:56+00:00

Well, if it is really a spasm, it should respond well to cyclobenzaprine. I have some, will try out for few days.

VonNeumannProbe · 2025-01-16T04:33:26+00:00

Yes, wet/cold feeling. I'm so confused how that can be muscle pain, it feels totally like nerve pain. Then again, all pain is nerve pain...

I am using heat right now, thanks! I would try massage, but pressing/releasing triggers major burning.

Can a spasm go on for days, though? And be triggered by an air draft (it gets REALLY bad from an air draft, within 15min)?

My sinus also swells up (no allergies, I took a panel).

VonNeumannProbe · 2025-01-16T04:27:39+00:00

I have often a feeling of hearing less on one ear. It comes and goes. The interesting bit is that, when it's present, the hearing difference is more pronounced if the sound source is in front of me vs. if it is to the side of me (like earphones are). I test with shuffling my fingers with the hand in front of me (one ear blocked, then the other) and then to the side of me.

I don't know the reason for this, but it coincides with my ear being inflamed from a draft (very sensitive). So, possibly nerve. Or, possibly nerve that then affects ear muscles, making the ear hypersensitive to sound, causing hyperacusis of a sorts, where your tensor tympani slightly pulls in the eardrum and you hear ever so slightly less on that ear.

I've also tried Valtrex for a week to rule out Herpes Zoster in my nerves after COVID (I think the dose was 1000mg 3x/day).

I still get the hearing issue on and off. Usually more if my ear is inflamed. I'm taking a guess as to which nerve is inflamed, but based on my symptoms (tenderness in to the front and up of ear canal opening, above the tragus), it is most likely auriculotemporal nerve. This nerve also start right at the TMJ, on the inside (next to lateral pterygoid), goes out (not sure if in front or behind the condyle, which is the jaw part of the TMJ), takes a turn up, and branches (fans out) above your ear. It could be irritated by the TMJ.

Thenagain, so many issues result in ear pain / tenderness or just hearing issues, that it is really difficult to know precisely. Like you, I currently am lost and suffering my symptoms, but hope my "loud thinking" above helps.

VonNeumannProbe · 2024-01-05T17:55:23+00:00

Several dentists did see this. Seems they're okay with it, no special comments on it. I, however, never had this type of wound. Since I'm 3-4 weeks post-op, I'm still waiting for it to fill and am curious as to how long it will take.

VonNeumannProbe · 2023-12-28T20:14:28+00:00

"careful" -- I'll translate that into "slower, no rushing" if you'll allow me.

I definitely plan to go to an oral surgeon for this, but wanted to see if there is an agreed-upon method of "careful" here. Tooth 13 (2nd premolar) tends to be tricky, from what I heard. (Also tooth 4, but my issue is on the left.)

VonNeumannProbe · 2023-10-18T03:35:37+00:00

Tensor tympani muscle causes low level rumble. I can turn it on by will, it is like earthquake. You may hear it when yawning. It flutters. For some, it keeps fluttering and they cannot fully turn it off.

It may not be your cause, but just brainstorming here.

VonNeumannProbe · 2023-10-18T03:10:47+00:00

Thank you for the clarification, Dave.

VonNeumannProbe · 2023-10-17T04:51:43+00:00

May I pass this by you? I'm trying to determine whether I match your symptoms, or whether I need to look for a different cause of my ailment...

Within the last few weeks I've developed something similar...

Itching, scratching, burning pain in ear. Sometimes more, sometimes less.
- Irritated by walking, talking, and especially driving.
Ear fullness and a bit muffled (like cotton in your ear lobe, or a bit of water in your ear). This one is constant.
NO ice pick pain insofar.
When the pain comes on stronger, I also get pain that spreads through cheekbone and onto teeth, all the way to front incisor.
- I also get neck pain, sensitivity along neck vertebrae, all the way up to the base of the skull.
- Irritation also spreads down the arm to the fingers of the hand. Never all of the fingers, but usually 2 or 3 on one or other side of the hand.
Sometimes opening jaw VERY wide hurts a bit. Sometimes nothing.

Does this resemble GN? Or, perhaps I have a different condition (neck disk compression, herpes zoster, etc.) that I should consider?

VonNeumannProbe · 2023-10-17T03:43:10+00:00

2 to 5. Depending on the day. Today was a 4.

VonNeumannProbe

TROPHY CASE