Living with Neuropathy - Welcome to the group

vertigo is different and happens in a different part of the ear, than having the crystals out of alignment -- you can see an ENT, but you may be referred to a vestibular therapist

everyone has crystals in their ears, that help with balance, dizziness, etc -- the crystals, for some reason, migrate out of the canals, and need to be put back in place -- google vestibular or ear crystals --- they probably can explain it much better

this comes from a therapist
When I tell a patient they are dizzy because of loose crystals in their head, many of them are skeptical, to say the least.

But then I tell them I can treat it effectively with no expensive scans or tests. They won’t need surgery or medications. They just need a 30-minute visit in my office. bbThat’s what really turns their heads, so to speak.
Loose crystals in the head

Benign paroxysmal positional vertigo (BPPV) is the most common type of vertigo. And, as strange as it may sound, it is caused by tiny calcium carbonate crystals — otoconia — becoming dislodged from a small organ called the utricle within the chambers of your inner ear.

The body’s balance system — also known as the vestibular system — is, literally, finely balanced. The slightest anomaly can have hugely disproportionate effects.

If fragments of otoconia accumulate in one of your balance canals, they can cause a kind of micro-turbulence of the canal’s fluid, which is normally static if your head is not moving. As a result, your inner ear sends a false signal to the brain that you are moving, and your brain adjusts your eye position to compensate. However, since you’re not really moving, this unnecessary eye movement results in vertigo. Additional contradictory sensory information from vision and other sensors of body position make the experience even worse.

Fortunately, the sensation is brief, and it is only triggered when you put your head in a position such that the dislodged otoconia succumb to the effect of gravity.

This is an example of both the beauty and the delicacy of the human balance system. And it’s also how a skilled caregiver can easily fix BPPV.

There is a proven therapy for most presentations of BPPV. It’s been around for over 20 years. Practically any trained provider can administer the treatment: a primary care physician, a nurse practitioner, a trained physical therapist, or a specialist like an audiologist or an otolaryngologist.

Called the Epley maneuver, its objective is deceptively simple: to cause the otoconia to go back where they belong. The maneuver relocates them from the balance canal back to their gelatin membrane in the utricle, using gravity to nudge them along.

The technique for accomplishing this is to find the position, the movement, or the particular head angle that triggers an attack, in order to identify which ear and balance canal is affected. Once this is determined, a series of head movements can be used to enlist gravity to help the otoconia find their way home.
There are two important things you should know about this approach to curing BPPV:

The Epley maneuver almost never fails. And if the vertigo does recur, we can usually just repeat the procedure and it will almost certainly work again.
Even though BPPV is easy to diagnose and easy to treat with the Epley maneuver, some doctors may be overhasty in ordering expensive imaging scans and blood tests for their vertigo patients, and they may prescribe medications like meclizine that treat the nausea and vomiting caused by motion sickness but do little or nothing to address the root cause of the problem.

Granted, not all vertigo is BPPV, and there are other conditions that resemble BPPV and may require more in-depth evaluation. However, BPPV is the most common type of vertigo, and it can be readily diagnosed by a trained provider. The symptoms are clear, repeatable and predictable. In classic BPPV, the patient feels fine until you put them in the trigger position, and then they get vertigo. It typically lasts for less than a minute, and if you keep repeating the move, the vertigo “fatigues,” meaning it diminishes in both severity and duration.

It bears repeating that we know how to treat BPPV mechanically. Surgical options are only considered in rare circumstances. And yet, some patients undergo unnecessary tests and are prescribed medications which have not been established as effective for use in treating BPPV.

BPPV is not a life-threatening disease. That’s why the first letter—“B”—stands for benign.

But the next letter—“P” for paroxysmal—makes it very serious to the sufferer. The attacks are sudden, intense, and often come with no warning. It’s an alarming, even frightening experience. Some people think they’re having a stroke the first time it happens.

One physical sign, nystagmus, also goes by the name “dancing eyes.” The eyes rotate in the head involuntarily, as the brain adjusts them for a head movement which is not occurring. If you’re not a healthcare professional, having never witnessed it, and you see your loved one lying on the exam table with their eyes rotating slowly in their head, it can be disconcerting.

But again, we can do something about it.

We know how to treat BPPV. Treatment maneuvers for BPPV resolve the symptoms at a rate of 90% or more after one to three treatments. In addition, symptoms may decline spontaneously as the brain finds ways to adjust over time to the abnormal signals received from the balance system.

Thanks for the good info @lois6524 and @jo54 I’ll do some more research!

You ever experience numbness jaw pain or anything like that bless your neuropathy what I mean numbness and mean in my mouth. My head pain experience touchiness and it's hard to lay down and sometimes I'm dizzy and light headed. I was wondering if anybody else has having this hard time like me.

I've been on this group for a few months now, but haven't posted for a while. The reason is that I've been getting treatment, that's been working, for my peripheral neuropathy and wanted to see results before I posted about it. My results are a 90% improvement in symptoms. Do I still have some discomfort? yes Is it a great improvement? YES! I can highly recommend it. There was one lady that was getting treatment told me that she's had PN for 10 years, been to many doctors who couldn't help her. The last doctor told her to stop looking for a cure because there isn't one. When she walked into this place she could hardly walk. Now, her walking has VASTLY improved. I've seen her walk myself.

PLEASE, consider contacting COMPLETE REHAB in Clemmons, NC. The owner is Bret Duffey, a former Marine. Their website is https://crtherapy.com/ . Their phone number is (336) 778-0292. They've treated over 3,000 people and they specialize in all types of neuropathy, and have had patients drive from as far away as West Virginia, a 6 hr one way drive. I personally have been driving a 3 hr. round trip for their treatments. I HIGHLY recommend them to anyone suffering from this condition. If you call them, please tell them that Walter McIntyre told you about it. I'll get nothing for it, but just want Bret, Emily & the team to know that I appreciate their help so much. I truly believe that GOD led me to them through a Google search.

could you tell us what this treatment involves -- we don't need details, just how it works --- THANKS

Yes. What are the treatments that work? What is the cost? I live in Ohio so this would be very difficult to do. But maybe someone around me does the same. Any information you can give would be great.

@waltermc, thank you for sharing an update with us. I'm glad your treatment is helping with your symptoms. I too would like to know specifically what the treatment involves. I went to the website but it doesn't say anything but it does show a photo here that looks much like the stimulation therapy and treatments offered by Realief Neuropathy Center which are expensive with no guarantees. I'm wondering if they have treatments like Myofascial Release Therapy as part of their treatment? Here's a discussion that talks about Myofascial Relief Therapy:

> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
-- https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Thank you so very much for the information you have posted here and congratulations on your health improvement. I have been dealing with serious neuropathy for several years and I generally look to grasp at any straws as my condition seems to worsen.
I have tried many different treatments but none have been successful. I live a very long distance away from their clinic but will travel just about anywhere to find relief.
If you can please provide more information about their treatments before I commit to traveling that distance, it will be very much appreciated.