Living with Neuropathy - Welcome to the group

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

@elained

I developed myoclonus and syncope as a side effect of Cymbalta (duloxetine). It is a rare side effect, and I didn't develop it until after I had taken Cymbalta for SIX YEARS. It took 18 months before we figured out the culprit was Cymbalta.

The key is to check your meds for RARE SIDE EFFECTS on webmd or a similar site.

I had every test in the book, and saw a specialist in epilepsy (ruled out immediately), I even insisted on an MRI of my brain.

But it was the Cymbalta and then it turned out I couldn't take ANY SSRI or SNRI without myoclonus and syncope.

And I had taken Prozac beginning in 1988, and other similar drugs for almost 30 years before the problem began in 2016.

Best wishes in finding out what causing your syncope, elizabj.

Regards, ElaineD

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Thank you for relplying. I am not taking any medications at all. So dizziness not from medications. That is one of the reasons I am reluctant to take the medications for pain cause I already feel crappy. So in pain everyday

don't rule out that your crystals in your ear/s are out of alignment — it can cause a lot of dizziness — seems strange, but please don't discount that possibility

Is stem cell injection good for foot neuropathy.

@commworks

Is stem cell injection good for foot neuropathy.

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Hi @commworks, welcome to Connect. There is another discussion on Connect that you may want to read and join in the discussion.

> Groups > Neuropathy > Stem Cell Therapy for Neuropathy
https://connect.mayoclinic.org/discussion/stem-cell-therapy-for-neuropahy/

I have idiopathic small fiber peripheral neuropathy with only numbness in the feet and ankles and was also trying to find out if stem cell therapy really helps. I have no medical training or background but I can find no evidence that it works and there are a lot of FDA warnings about it which you can find in the posts in the above discussion.

Have you looked into getting stem cell injections for your neuropathy?

@johnbishop

Hi @commworks, welcome to Connect. There is another discussion on Connect that you may want to read and join in the discussion.

> Groups > Neuropathy > Stem Cell Therapy for Neuropathy
https://connect.mayoclinic.org/discussion/stem-cell-therapy-for-neuropahy/

I have idiopathic small fiber peripheral neuropathy with only numbness in the feet and ankles and was also trying to find out if stem cell therapy really helps. I have no medical training or background but I can find no evidence that it works and there are a lot of FDA warnings about it which you can find in the posts in the above discussion.

Have you looked into getting stem cell injections for your neuropathy?

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I have attended a sales lectures by a chiropractor on stem cells for Neuropathy of feet, but I don't plan to pursue this path. I have also seen a chiropractor for electrical stimulation of feet, but didn't buy into that one either.

@commworks If like to add my welcome as John did I have back and leg problems not neuropathy but do have a Tens unit but I'd be keary about putting it on my feet as you Just my 2cents

be very cautious of stem cells therapy — there is no study that has proved the effectiveness of stem cell for neuropathy — there are however some persons who have used electrical stimulation with success. It does not eliminate the neuropathy, but creates blood flow to the legs/feet and it may give some relief. Be very cautious if the chiropractor is talking about hundreds of dollars for each treatment

@elained

I developed myoclonus and syncope as a side effect of Cymbalta (duloxetine). It is a rare side effect, and I didn't develop it until after I had taken Cymbalta for SIX YEARS. It took 18 months before we figured out the culprit was Cymbalta.

The key is to check your meds for RARE SIDE EFFECTS on webmd or a similar site.

I had every test in the book, and saw a specialist in epilepsy (ruled out immediately), I even insisted on an MRI of my brain.

But it was the Cymbalta and then it turned out I couldn't take ANY SSRI or SNRI without myoclonus and syncope.

And I had taken Prozac beginning in 1988, and other similar drugs for almost 30 years before the problem began in 2016.

Best wishes in finding out what causing your syncope, elizabj.

Regards, ElaineD

Jump to this post

Great info @elained – the culprit in my case could be sertraline. Did you end up discontinuing all SSRIs? Not sure I can manage that…

@lois6524

don't rule out that your crystals in your ear/s are out of alignment — it can cause a lot of dizziness — seems strange, but please don't discount that possibility

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@lois6524 I’m not sure what you mean by crystals in ears being out of alignment… can you elaborate and is there a solution?

If the crystals inside your ear are out of alignment you can have vertigo. You need to see an ENT if you have this problem

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

@jo54

If the crystals inside your ear are out of alignment you can have vertigo. You need to see an ENT if you have this problem

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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

@lois6524

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

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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.

@lois6524

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.

Jump to this post

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.

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