How the Brain Controls your Nerve Reactions

As neuropathy patients, we all know that whatever we suffer from, has a lot to do with the brain as the driving force behind the nervous system. However, very few of us understand what goes on there and how it really works.
Our old friend Dr. Erickson, from the Health and Wellness Centre in Denver, gives us his usual high speed explanation of how something operates: in this case the brain and how what happens there affects our nervous system. He may talk quite quickly and you may need to watch it a couple of times to let it all sink in but nobody explains things quite as clearly as he does. He really knows how to talk to the layman patient and you get the feeling that he really wants to make it as simple as possible for us to understand.

How Friends And Family Can Help Pain Sufferers

Today's post from paincommunity.org (see link below) looks at another aspect of care-giving when it comes to people living with relentless pain. This time it gives tips for family and friends and presents them from the point of view of the sufferer him- or herself. Many people with chronic pain feel misunderstood, disbelieved, unappreciated, ignored even and this is a plea for a little more understanding from those around them. of course, nobody pretends that people in pain are easy to live with but sometimes family and friends are at a loss as to how to help. This article suggests a few ideas.

What Can I Do? Tips for the Families and Friends
Posted by Janice Reynolds | January 14, 2014

The presence of persistent (aka chronic) pain is often “the elephant in the room”. For those of us who have persistent pain, daily living can be a challenge. Though we may not “look” like there is a problem, there is. For some, our pain is well controlled and for others it isn’t. For all of us, pain dictates how we spend our day as well as how we do things. It is very fatiguing even at the best. These are some thoughts and suggestions I wish to pass on to our family and friends. This is a response to the well-meaning comment: “What can I do?” This simple question can be overwhelming.

Tips That Can Make a Difference:
 
1. Don’t avoid me. Be the friend or loved one you have always been. Please visit. Find out or call first to be sure it is a good time for company.

2. Let’s talk together about it. Try not offer advice unless asked. You might start off by asking if I feel like talking about it at that moment or later.

3. Pain isolates; cry with me; laugh with me; let me know my feelings and needs are all right. Be patient and caring. Acknowledge my pain. Validate my feelings good and bad; loss, hope, sadness, anger, acceptance.

4. Remember persistent pain doesn’t mean the same level of pain is present all the time. Even if I have a good pain plan there are times my pain can elevate and spiral out of control. If you notice non-verbal cues, like a change in my mood, becoming very still or more restless or the inability to tolerate noise or light, encourage me to use the familiar techniques I depend on to lessen my pain; this could include taking recommended medications.

5. Don’t be afraid to touch me. Ask first if you have doubts; holding my hand lightly may be okay where squeezing it isn’t.

6. Learn the difference between physical dependence and addiction; I may depend on pain medication but may not have a problem with the misuse or abuse if it. These are very different situations.

7. If there is something you don’t understand, let me know so I can better explain it. Never be judgmental. Do not be afraid to be honest with me either.

8. Help me make a grocery list, if needed. Either offer to go with me or even shop for me.

9. Offer to watch my children or pay for a reliable babysitter for a while so I can have a little alone time with my spouse or by myself. They can probably use a break from me as well.

10. Cook or bring over a meal on occasion. Preparing something for the freezer for a time when I am having a bad day would be a life saver.

11. If you find I have fallen behind with cleaning, gently offer to help—dust, vacuum, wash dishes or clothes.

I know there are others. What would help you the most? Please pass this along to the families and friends of people you know who live with pain (including yourself); maybe we will get the elephant out of the room or at least halfway out the door.

http://paincommunity.org/what-can-i-do-tips-for-the-families-and-friends/

How Drug Companies Need Their Patents

Today's post from burrillreport.com (see link below) is interesting because it shows us how drug companies are dependent on their patents for profits. In this case, the makers of Cymbalta (a common drug for the treatment of neuropathic symptoms), Ely Lilly have just lost their patent-exclusivity for Cymbalta and are therefore preparing for a big drop in revenue as other companies move in with alternatives to the drug. More competition is nearly always good news for the patient as it leads to greater choice and generally cheaper prices but there is another side to the story in that companies then have less revenue to invest in new research for newer drugs. It's how the pharmaceutical market works and considering their profit margins, we must be pleased when patents run out and alternatives become available. That said, neuropathy patients are still looking for the big breakthrough new drugs and that requires huge research funds, which are often generated by sales while current drugs are under patent. 

Eli Lilly Still Plans on Meeting 2014 Goals Company faces challenges, but is banking on new approvals and cost cutting.
DANIEL S. LEVINE The Burrill Report  October 03, 2013

“To reach its goals, Lilly says it is banking on targeted growth initiatives and the late-stage drugs in its pipeline.”

Eli Lilly told investors that despite the loss of revenue due to patent expirations for key drugs, it still plans on meeting its goals of generating at least $20 billion in revenue and $3 billion in profit for next year, returning to revenue growth and improving margins after that.

But to do so will be “challenging,” according to Lilly CFO Derica Rice, who noted that devaluation of the Yen and slower market growth in emerging market countries have diminished the company’s near-term expectations for sales growth. Rice says the company is finding appropriate ways to achieve its goals and will take additional actions to achieve its 2014 net income and operating cash flow targets through cutting expenses.

The comments came during a meeting with the investment community held at the company’s global headquarters in Indianapolis.

To reach its goals, Lilly says it is banking on targeted growth initiatives and the late-stage drugs in its pipeline. The company expects to launch several new drugs in 2014 with seven regulatory submissions for four different drugs made in 2013. This includes two drugs for type 2 diabetes and a drug for gastric cancer. The company also said it will make stock repurchases totaling $5 billion over time.

Lilly’s top-selling product, Cymbalta, for the treatment of major depressive disorder and general anxiety disorder, and pain associated with diabetic neuropathy, fibromyalgia and other chronic pain disorders lost patent exclusivity this year. Global sales of the drug accounted for roughly 25 percent of the company’s revenue in the last quarter, and generic selective serotonin and norepinephrine reuptake inhibitors on the market are predicted to reduce Lilly’s 2014 global revenue by 20 percent.

The company says its strategy to focus on development of innovative medicines has produced the strongest pipeline in its 137-year history, with 13 experimental drugs in late-stage clinical testing or in regulatory review and 26 more in mid-stage trials. That’s five times the number of candidates in mid-to-late-stage development than the company had in 2004.

“We’ve undertaken extensive efforts to transform our company to address the challenge of patent expirations and the demands of patients and payers for greater value from medicine,” says John Lechleiter, CEO of Lilly. “Today, we’re seeing our strategy bear fruit, backed by clinical data that strengthens our confidence in our innovation-based strategy and in our ability to return to growth.”

http://www.burrillreport.com/article-lilly_still_plans_on_meeting_2014_goals.html

How Gut Microbes May Influence Neuropathy

Today's post from podiatrytoday.com (see link below) is an interesting one looking at the relationship between the millions of bacteria in our digestive system, inflammation of the gut and auto-immune diseases like neuropathy. Written in a way that will appeal to most people at all levels of medical understanding, it discusses a subject which neuropathy patients may come to hear much more about in years to come. How much do we know about keeping our intestines healthy? The antibiotics we take, kill both good and bad bacteria indiscriminately and supplementation with pro-biotics seems more and more a good idea but the idea that gut inflammation may also be directly linked to nerve problems is a relatively new one. See what you think and ask yourself if you're looking after your gastrointestinal tract as much as you should be. 
 

Why Studying Microbiomes May Help In The Treatment Of Diabetic Neuropathy
Stephen Barrett DPM FACFAS Friday, 04/17/15

I had finally had made it back from my much delayed next visit to the Super Brain, the Bari Tass. At first, I did not know what to make of what it had told me. I thought my question was very simple and straightforward. But when I got the answer, I was initially disappointed: “Get some guts.”

“Get some guts,” I thought. What the hell was that for an answer to my question about what the next, landmark discipline of study in medicine was going to be? Then it bellowed at me, “It’s all about the microbiome.”

“Microbiome.” I scratched my head, initially thinking about that biosphere that they built north of Tucson, Ariz. a couple of decades ago.

The super computer snorted a couple of times, hard drives churning, RAM burning, and then it bellowed in that digital voice, “Mucus and poop, you idiot.”

“Oh,” I exclaimed. It then dawned on me that the “brain” thinks those little microbes that live inside our gastrointestinal tract may play a bigger part in our human picture than solely being vilified as the source of serious Gram negative infections or a complication of an antibiotic regimen manifesting as a Clostridium difficile colitis nightmare.

No matter how important and independent you think you are, you are nothing more than a symbiote. You are not alone. In fact, you have about 10 times the living microbes in your gut than you have cells in your body. Chew on that stat for a minute. Now, if that does not cause an a-ha moment, think about the fact that the collective DNA of this “organ” that lives inside each and every one of us has a genome more than 150 times that of human DNA. If you want to put a number on it, like Carl Sagan used to do for us on the show Cosmos, there are maybe 100 trillion organisms living inside you right now, not just “billions and billions.”

So I got some guts and started to do some reading. Interestingly, in the March 2015 Scientific American, they have this really cool section on the microbiome. The biggest point to come out of my reading is that I had to shift my paradigm of looking at this type of thing as a positive rather than just a non-talked about daily function of humans. Most of these 100 trillion microbes are actually good for us and if we do not have them, our immune system is severely debilitated. To illustrate this point, the article talks about a gastroenterologist named Harry Sokol, MD, PhD, who discovered almost eight years ago that a missing microbe was present in sections of colon that surgeons resected from patients with Crohn’s disease.1 To be precise, this little poop bug has a name: Faecalibacterium prausnitzii. The article suggested that rather than “bad” microbes prompting disease, could a single “good” microbe prevent disease? Sokol then proved that to be the case in rats.2

So now it turns out that these symbiotic inner partners of ours are indeed very important. Some are dangerous and we still need to do the neighborhood watch on them.

So not all these little guys are bad actors. They are hugely important, regulating our immune system and specifically inflammation. Bad actors like C. difficile cause havoc on the gut, making it a leaking, inflamed and bleeding mass of tissue. On the other hand, close cousins that we refer to as “clostridial clusters” fight inflammation and soothe the immune system. It seems that the good guys promote T regulatory cells, which the gut boys nicknamed “T regs.” Without T regs, we can get overwhelming inflammation. (They didn’t really provide the nickname. Biologists did. However, that didn’t work in the storytelling here. Work with me.)

What Does This Talk About The Gut Have To Do With The Foot?

Now I know the next question the reader is noodling right now if he or she has made it this far. Bless you if you have as we really need to start thinking about how this can translate clinically. “What the hell does this have to do with podiatric medicine?” Fair question, albeit close-minded.

Well who sees a ton of patients with peripheral neuropathy? You. Now, I cannot think of many, if any, neurophysiological diseases that do not have a significant inflammatory component to them. In fact, many neurological diseases are truly autoimmune, are they not? Multiple sclerosis and ALS come to mind fairly quickly. It seems that there is a “gut-brain axis” as these little travel partners can synthesize GABA, serotonin and norepinephrine to name a few neurotransmitters that affect the central nervous system, helping modulate pain and that jacked up microbiome that has been directly associated with anxiety.3 That right there is enough to stand up straight, wake up and wonder how the anxious patient does perioperatively in comparison to the one who has no anxiety?4 Not good. Now think pain modulation.

When you start to really look at the whole patient, how can we ignore the microbiome? You have a patient post-op with a slight cellulitis and guess what you write for him or her? An antibiotic. Yep, you just killed some good guys trying to get rid of the bad.

After eating all yak products for several weeks, I can say that I was really in tune with my microbiome. I am thinking a lot more about it now. There are many ramifications of messing with the gut and maybe we should also be treating our patient’s microbiomes when we put him or her on an antibiotic with a probiotic? The bottom line is you have to have a “gut” feeling when you start diving into this fascinating subject that patients with good GI microbiota just have to heal faster, have fewer diseases, are happier and no doubt eat better.

Financial disclosure: I have no financial interest in probiotics or any gut microbes.

References

1. Velasquez-Manoff M. Among trillions of microbes in the guy, a few are special. Scientific American. 2015; 312(3).

2. Sokol H, Pigneur B, Watterlot L, et al. Faecalibacterium prausnitzii is an anti-inflammatory commensal bacterium identified by gut microbiota of Crohn disease patients. Proc Natl Acad Sci USA. 2008; 105(43):16731-6.

3. Sharma A, Lelic D, Brock C, Paine P, Aziz Q. New technologies to investigate the brain-gut axis. World J Gastroenterol. 2009; 15(2):182-191.

4. Neufeld KA, Foster JA. Effects of gut microbiota on the brain: implications for psychiatry. J Psych Neurosci. 2009; 34(3):230-231.

http://www.podiatrytoday.com/blogged/why-studying-microbiomes-may-help-treatment-diabetic-neuropathy

How The Brain Processes Chronic Pain

Today's post from sciencedaily.com (see link below) is a fascinating look at how the brain processes pain signals. It looks at which signals the nerve cells use to respond to a pain stimulus. Slowly but surely, scientists are building up a map of how nerve cells behave in the brain. It's been a largely unexplored area due to the complexity of brain cells but the more is discovered, the better people with chronic pain will be able to be treated in the future.
 

Brain processes ongoing pain more emotionally
Date: March 11, 2015 Source: Technische Universitaet Muenchen
 
Summary:

A momentary lapse of concentration is all it takes for a finger to become trapped or sprain an ankle -- and it hurts. Pain is the body's protective mechanism and a complex neurological phenomenon. Moreover, ongoing pain in the sense of chronic pain can be a disease, clinicians say. Scientists have now demonstrated that already during a few minutes of ongoing pain, the underlying brain activity changes by shifting from sensory to emotional processes.




The picture shows the EEG results during a short (left) and a long-lasting pain stimulus (right). The brain areas with the strongest activity are depicted in red. Short pain stimuli are processed in sensory brain areas, whereas ongoing pain is processed in frontal brain areas which are related to emotional processes.
Credit: E. Schulz et al., 2015, Prefrontal gamma oscillations encode tonic pain in humans, Cerebral Cortex

In their experiments, Prof. Markus Ploner, Heisenberg Professor for Human Pain Research at the TUM School of Medicine, and his team investigated pain perception: How does the duration of pain or the action of a placebo affect activities in the brain? For their measurements they used electroencephalograms (EEGs). The test subject wore a cap with 64 electrodes that can measure nerve cell activity in the brain throughout the experiment. This method makes it possible to chronologically pinpoint which signals nerve cells use to respond to a pain stimulus.

Pain influences emotion

The scientists used the following arrangement for their experiments: Over a period of ten minutes, 41 participants in the study were given painful heat stimuli to the hand which varied in intensity throughout the duration of the experiment. The participants were asked to continuously assess the level of their pain on a scale of one to a hundred with the other hand using a slider.

"We were absolutely amazed by the results: After just a few minutes, the subjective perception of pain changed -- for example, the subjects felt changes in pain when the objective stimulus remained unchanged. The sensation of pain became detached from the objective stimulus after just a few minutes," says Markus Ploner, describing the results.

Previous studies showed that brief pain stimuli are predominantly processed by sensory areas of the brain that process the signals from the sensory organs such as the skin. However, in their experiment with longer-lasting ongoing pain, the EEGs gave the scientists a different picture: in this case, emotional areas of the brain became active.

"If pain persists over a prolonged period of time, the associated brain activity shows that it changes from a pure perception process to a more emotional process. This realization is extremely interesting for the diagnosis and treatment of chronic pain where pain persists for months and years," explains Markus Ploner, who is also senior physician in the Department of Neurology at the TUM Klinikum rechts der Isar.

Placebos change the perception of pain

A second experiment showed that it is not just the duration, but also the anticipation of a pain stimulus that affects perception. Twenty test subjects were initially given different intensities of painful laser pulses on two areas of the back of the hand. The participants then rated verbally how strong they perceived the pain stimuli. As the experiments progressed, the subjects were once again given the same stimuli, the difference this time being that two creams had previously been applied to both areas. Although neither cream contained an active substance, the subjects were told that one of the creams had a pain-relieving effect.

The result according to Markus Ploner: "The subjects assessed the pain on the skin area with the allegedly pain-relieving cream as significantly lower than on the other area of skin." The scientists were further able to demonstrate how the brain implements this placebo effect: although the subjects were given the same pain stimuli, the nerve cells in the second run triggered a different pattern of brain activity.

"Our results show how differently our brain processes the same pain stimuli. Systematically mapping and better understanding this complex neurological phenomenon of 'pain' in the brain is a big challenge, but is absolutely essential for improving therapeutic options for pain patients," in Ploner's opinion.

Story Source:

The above story is based on materials provided by Technische Universitaet Muenchen. Note: Materials may be edited for content and length.

Journal References:
E. Schulz, E. S. May, M. Postorino, L. Tiemann, M. M. Nickel, V. Witkovsky, P. Schmidt, J. Gross, M. Ploner. Prefrontal Gamma Oscillations Encode Tonic Pain in Humans. Cerebral Cortex, 2015; DOI: 10.1093/cercor/bhv043
Laura Tiemann, Elisabeth S. May, Martina Postorino, Enrico Schulz, Moritz M. Nickel, Ulrike Bingel, Markus Ploner. Differential neurophysiological correlates of bottom-up and top-down modulations of pain. PAIN, 2015; 156 (2): 289 DOI: 10.1097/01.j.pain.0000460309.94442.44

http://www.sciencedaily.com/releases/2015/03/150311124530.htm

How Neuropathy Is Currently Treated

Today's post from thebody.com (see link below) is the third general post about neuropathy from The Body. It was written in January 2012 but very little has changed since then, apart from the rejection of Lyrica (pregabalin) as a treatment for HIV and diabetes-related neuropathy, by it's own makers Pfizer. It just wasn't found to work and the side effects can be very worrying for some people. The drug is still widely prescribed by doctors around the world but if the makers themselves withdraw their promotion, we really should take note.

How Neuropathy Is Currently Treated

By Dave R. January 3, 2012

Internet links shown in this post are designed to provide more detailed information if required.

It is probably best to be brutally honest here: neuropathy is essentially nerve damage and as of November 2011 (the writing of this piece), there is no cure for nerve damage and nerves where the cells are dead cannot be repaired. Anyone who claims to be able to "cure" your neuropathy is exaggerating at best!

That said, many of the worst aspects of neuropathy, and that means the symptoms, can be helped or alleviated, so that life becomes more bearable. Doctors may also tell you that some forms of neuropathycan be cured but that means that the cause of the neuropathy may be curable and if the neuropathy is not very advanced, the nerves can theoretically regenerate as long as the nerve cells themselves are not destroyed. In general though, HIV-related neuropathy can be made to feel better but it can't be taken away.

That's obviously not good news for those who are trying to think positively about their condition and are hoping, if not expecting, that it will eventually be cured. We are so used to taking a pill, or undergoing an operation to cure us of our illnesses, that it almost seems inconceivable that there's a disease that can't be completely cured. Then we remember that we also have to deal with HIV and although it's a cruel truth, neuropathy is just as difficult for the medical researchers to find a cure for. Two incurable diseases then ... no escaping it ... life's a bitch!

Okay, once you've got your head around that, you can move on and explore the many ways that neuropathic problems are currently treated and hope that one or more will work for you. After that, your optimism can kick in and you can evaluate your options with your doctors, and aim for a more comfortable life.

Step one involves finding a home doctor who will listen to your story and symptoms; will believe and sympathise with you and if not a specialist himself, will refer you to a neurologist. That may seem to go without saying but many neuropathy patients have to jump several hurdles and stamp their feet before they are taken seriously and this of course increases stress and causes unnecessary frustration ... not a good start to your treatment.

Let's assume that you've reached a specialist. If he's very experienced, he may listen to your story and make a diagnosis there and then (neuropathic symptoms are pretty much unique to neuropathy) but most will send you for a series of tests because illnesses need to be "officially confirmed" for all sorts of reasons, in order to try to establish the extent of the nerve damage.

At this point you should be aware that a large percentage of neuropathy patients emerge from the testing with inconclusive results, and the cause cannot be established although their suffering from neuropathy is not disputed. The condition is then referred to as idiopathic neuropathy and in the case of HIV-positive people, the cause is often assumed to be either the HIV meds or the virus itself (although it could easily be any of the other well-known causes). Most specialists will not expose you to further forms of testing; it's expensive and intrusive and will frequently also lead to inconclusive results.

Having been given a diagnosis of which sort of neuropathy you have, based on testing, whatever your symptoms are and the details of your experiences so far, the specialists seem to pretty much universally follow a standard series of medication treatments, until one is found which will alleviate your symptoms and these are discussed below. If you're lucky your HIV specialist may well be very experienced in dealing firsthand with HIV-related neuropathy, otherwise you may receive treatment from a neurologist or even your home doctor -- they nearly all follow the accepted sequence, if only because this has already been the way for decades and the disease is not known for innovative "light bulb" moments when it comes to medication.

In principle, any other underlying conditions are treated first, followed by symptomatic treatment for neuropathy.

You can read about the various options in much more detail by following the links at the end of this post. They can give you a much better explanation than I could ever do. What follows is a short summary.

Strange as it may seem, after you have been told to try the common, over-the-counter analgesics, (aspirin, ibuprofen, paracetamol etc.) which have little effect on nerve pain, you may commence treatment with an anti-depressant. (You may well need one at this point!) Amitriptyline is the most common starter drug to try to control the tingling, burning or dull pain most often in the feet and legs; closely followed by Nortriptyline. These are so-called TCAs (tricyclic antidepressants) and the intention is to inhibit painful signals to the brain but they do have side effects (like all anti-depressants).

If these don't work then your doctor may move on to SSRIs (selective serotonin reuptake inhibitors) which are basically another form of anti-depressant. Drugs like, citalopram, fluoxetine, fluvoxamine, paroxetine and sertraline are just some of the options.

If one of these doesn't help then the next step is to move on to try anti-convulsant medication (epilepsy drugs) which for reasons which are poorly understood can have a calming effect on neuronal activity. The most common of these are: carbamazepine and phenytoin, followed by a sort of second generation with fewer side effects such as: pregabalin (Lyrica), gabapentin, lamotrigine, levetiracetam, oxcarbazepine (a metabolite of carbamazepine), tiagibine, topiramate, and zonisamide. Carbamazepine, pregabalin and gabapentin are by far the best known of these but the side effects are still too much for many people.

I realise that lists of drug names and their drug classes have absolutely no meaning for most people but the likelihood is that you will meet one or more of these in the course of your treatment, and knowing what sort of drug they are will help you follow up with your own research later.

Remember, every drug you take may have an effect on your HIV medication -- always check with the doctor for potential clashes. It's a fact of life ... your HIV meds must come first.

It's also possible that at some stage you will be prescribed so-called topical anaesthetic therapies, which are delivered via patches or creams. Lidocaine and capsaicin (chili pepper component) are the commonest to tackle the pain more or less where you feel it, on the feet or wherever it is worst. High-strength capsaicin patches (Qutenza) can bring very promising results, although the treatment is not easy and not without discomfort at first. The benefits are that you're not swallowing chemicals every day and you only need a treatment every few weeks.

For many people, one or more of those drugs will be enough to make their neuropathy bearable but if none of the above have worked for you, or you can't get used to them because of the side effects, or if the pain has reached such a level that they are just ineffective, you may be advised to move on to stronger medications such as opioids. Doctors will begin with relatively low doses of opiates like oxycodone, or tramadol and they may well take the edge off your pain but very often, higher doses are needed to mask the pain completely. The problem is that the body eventually needs more to achieve the same effect and they are potentially very addictive with all the associated side effects that brings. If you're taking opiates, you need a doctor who will keep an eye on your progress and not let you become addicted and believe me, that's easier than you think.

The side effects of neuropathy treatment drugs lead many people to explore other options to help with their pain. Many doctors will advise physical therapy but mainly because they feel they should, especially due to the fact that inactivity through pain can lead to muscle wasting and weakness but many patients find it almost impossible to keep it up -- the discomfort is just too great. Psychological therapy may also help but is often required to treat the side effects of the drugs, or the desperation many people feel when the drugs just aren't working. Many patients may try yoga, acupuncture, biofeedback, relaxation techniques, hypnosis, imagery, or a host of other meditative techniques to help reduce tension and help the mind to deal with the symptoms of neuropathy.

Many clinics and neurology departments also offer techniques involving electrical stimulation, ranging from TENS (transcutaneous electrical nerve stimulation involving applying small amounts of electrical stimulation to the skin) to invasive surgery using spinal cord stimulators and surgery on the nerves themselves. However, with no guarantees of success, these can be expensive and/or last-resort treatments.

Finally, encouraging research is finally being done in the field of nutrients and supplements, especially in the area of B-vitamins, anti-oxidants and co-enzymes such as acetyl L-carnitine and alpha lipoic acid. Again, every patient reacts differently and what works for one is useless for another, but the evidence is mounting that several of these supplements can play an active role in helping with the symptoms.

Every individual is different and responds differently to the various treatments available and many people respond well to a particular drug or therapy. If only it were possible to take one form of neuropathy and apply a standard treatment to it with a reasonable chance of consistent success! Unfortunately, it doesn't work that way; the symptoms may be similar but its effects are pretty much unique to its sufferer, as are the treatments that are applied to it. The absolute minimum we can hope for from our doctors is sympathy, a constructive approach to treatment and on-going support as we move through the various stages of the disease. Without those basic elements, neuropathy can be a very lonely disease and its effects can limit your life more than you ever imagined. Support from your doctors, family and friends, both physical and emotional, can make its worst effects more bearable and give you a positive outlook regarding dealing with the disease but it's not easy for anyone involved.

The specific links which follow provide much more detail regarding the general treatment of neuropathy and many of the other posts on this blog 'Neuropathy and HIV' cover individual drugs, therapies and alternative treatments. It is strongly advised to do as much research into your own neuropathy experience as possible; only then, (after discussions with your medical professionals) can you make informed decisions.

http://www.thebody.com/content/65300/how-neuropathy-is-currently-treated.html

Personal Story Of How Autonomic Neuropathy Can Strike

Today's post from masslive.com (see link below) has no personal link to HIV but shows how devastating a random virus can be when it attacks the nervous system. The case in point here, contracted an unidentified virus which caused her autonomic nervous system (all those involuntary functions we take for granted, like digestion, breathing, blood pressure etc) to fail on several fronts. The general term for this sort of nerve damage is dysautonomia. It sounds like a disease in itself but is actually an umbrella term for this sort of condition, in the same way that neuropathy is a general term for nerve damage.This story shows how alarming it can be, especially when there's no way of knowing how far the disease will progress and what the prognosis will be.

Monson Mom raises awareness of autonomic nervous system disorder
By Kathryn Roy | Special to The Republican on July 16, 2014

Emily Hespeth, a 16-year-old Monson resident, contracted a virus that has caused her autonomic nervous system to malfunction, and interferes with ability to eat.

MONSON -- Sixteen-year-old Emily Hedspeth was a healthy girl, just starting her sophomore year at Monson High School, when she began to show symptoms of an infection. That infection, which hit in September 2012, later resulted in a diagnosis of dysautonomia, an umbrella term for conditions that cause the body's autonomic nervous system to malfunction. The system controls such functions as heart rate, blood pressure and digestion.

Today, Hedspeth needs a feeding tube and struggles with various health problems. Her mother, Mary Hedspeth, is working to raise awareness about dysautonomia,.and its various forms. Emily suffers from Postural Orthostatic Tachycardia Syndrome (POTS), which causes an abnormal heart rate upon standing. There is currently no known cure for dysautonomia.

Hedspeth said doctors were baffled initially because it all started with what appeared to be an everyday virus.

“She had a fever, body aches, a headache, nausea, a sore throat, and she was very lethargic,” Hedspeth said.

More common ailments such as mononucleosis were ruled out. Although doctors never determined specifically which virus Emily contracted, they later determined that it had damaged her autonomic nervous system, her mother said.

“As a consequence of this, Emily also has gastroparesis, in which the nerves in charge of the stomach don’t work,” Hedspeth said. “She has a hard time eating and even maintaining her weight.”

Emily has a feeding tube coming out of one nostril, and she has had a temporary gastric stimulator out of the other nostril. She traveled to Louisville, Kentucky to have a permanent gastric stimulator put in in late June by the doctor who invented the device, to help her stomach function properly. Hedspeth compares it to a cardiac pacemaker, but for the stomach. It's too early to tell how the device will impact her quality of life.

But Hedspeth said Emily has suffered for a long time.

“Whatever she eats, she gets nauseous,” Hedspeth said. “She takes two bites of something and she’s full. She has terrible bloating. Sometimes her belly is so just so bloated, she looks pregnant.”

Hedspeth said her daughter has seen numerous doctors.

“Plenty of them thought she was anorexic,” she said. “Sometimes the doctors don’t listen to you, but I didn’t give up till somebody did.”

POTS causes Emily’s heart rate to change rapidly.

“Lying down, it’s 50 (beats per minute),” Hedspeth said. “When she sits up, it’s 80, and when she stands it’s between 120 and 130. She gets very dizzy and she almost passes out.”

Emily’s condition has forced her to miss out on school and other activities. She attempted to attend two classes at school this year.

“She had to go for Spanish,” her mother said. “She tried to do Spanish and English. She made it to Spanish, but every day is a battle for the poor kid.”

Emily is currently being treated by physicians at Massachusetts General Hospital, who are involved in a dysautonomia research study. She said researchers at Vanderbilt University are also studying the condition, and recently discovered that those affected by it have an unique aspect to their blood.

“Dysautonomia International (an advocacy group) is trying to raise awareness and money to help fund the next part of the research, so they can come up with a blood test which could be run by any pediatrician in the country,” Hedspeth said. “A lot of doctors don’t even know what (dysautonomia) is.”

Hedspeth said for now, it’s all about managing Emily’s symptoms. It’s not clear what the long-term prognosis is.

“They don’t really know how bad it’s going to get,” she said. “I don’t really want to think about it.”

For more information on dysautonomia, visit http://www.dysautonomiainternational.org./welcome.php

http://www.masslive.com/living/index.ssf/2014/07/monson_mom_raises_awareness_of_autonomic_nervous_system_disorder.html#incart_pop_thishour

How Capsaicin Works To Reduce Nerve Pain

Today's post from the-scientist.com (see link below) takes a look at a neuropathy treatment that seems to have both dropped off the neuropathy news vine and lost favour this last year or so and that is, the use of capsaicin to help control neuropathic pain. Capsaicin, extracted from chili peppers, has long been used as a topical treatment for neuropathy patients. However, its relative difficulty of use and potential for burning, means that it's not the most popular treatment for the patients themselves. However, capsaicin (along with marijuana) is actually one of the very few non-drug treatments that has been proved to work. This article helps us understand exactly how capsaicin works in reducing nerve pain - definitely worth a read. Remember, when all else has failed (especially damaging and powerful drugs originally designed for other purposes) it may be worth giving capsaicin a try again. The patches and cream need good advice and sometimes expert help with application but they may give you quite a bit of the relief you need.

How Hot Peppers Can Ease Pain  By Anna Azvolinsky | February 11, 2015

 Researchers uncover one way capsaicin—the spicy compound found in chili peppers—provides pain relief.

Capsaicin—a substance in chili pepper plants that makes them spicy hot—exerts its pain-attenuating effects by triggering a signaling cascade that results in the inactivation of mechano-sensitive transmembrane channels in neurons, according to a study published this week (February 10) in Science Signaling.

Initially causing a burning hot sensation, the compound is used as a topical pain medication because, when applied regularly, results in numbness to local tissue. Despite being widely used, researchers have previously not known how capsaicin exerts its pain-killing effects.

The initial pain-dulling sensation occurs when capsaicin activates heat-sensing transient receptor potential vanilloid 1 (TRPV1) ion channels on sensory neurons. Prolonged stimulation with the compound results in desensitization of these neurons. “This is one of the underlying mechanisms of capsaicin’s numbing effect, but TRPV1 is a heat sensor, so how it affects mechanical pain was not known,” said Tibor Rohacs, an associate professor of pharmacology and physiology at Rutgers New Jersey Medical School, who led the study.

Rohacs and his colleagues uncovered a link between the heat-stimulating function of capsaicin and its ability to relieve mechanical pain including neuralgia (pain from damaged nerves), neuropathy, and muscle and joint pain. Capsaicin’s activation of TRPV1 ion channels in turns inhibits mechanical force-sensing ion channels called Piezo1 and 2 by depleting phospholipid signaling molecules, phosphoinositides, in the cell membrane.

“What is unique in this study is how one kind of channel regulates the activity of another,” said Tamas Balla, a signal transduction researcher at the National Institutes of Health who previously collaborated with Rohacs but was not part of the current study. “I believe that this is the first example of ion channel cross-talk mediated by phospholipids,” Balla added.

“The work is very thorough and cutting-edge,” Mario Rebecchi, an anesthesiology and biophysics researcher at Stony Brook University in New York, told The Scientist in an e-mail.

Dorsal root ganglion (DRG) neurons perceive pain and are often used to study mechanically stimulated ion channels, also found in peripheral neurons of the skin. Using DRG neurons isolated from mice, Rohacs and his colleagues first found capsaicin able to inhibit mechanically activated currents in these cells. The researchers then expressed TRPV1 along with either the mechanically stimulated Piezo 1 or 2 ion channel in human embryonic kidney cells. The expression of TRPV1 was necessary for capsaicin to inhibit the activity of the Piezo channels. “What was really striking was that the inhibition [of the Piezo mechnosensitive channels] was almost 100 percent,” said Rohacs.

TRPV1 activation increases intracellular calcium ion levels, which then activate phospholipase C (PLC) enzymes to break down phosphoinositides. Adding two of the most abundant types of phosphoinositides into the solution of DRG neurons in vitro resulted in less inhibition of Piezo ion channel signaling, suggesting that these lipids are required to relay the signal from TRPV1 to the mechanically stimulated Piezo channels.

To show that the depletion of phosphoinositides inhibits the Piezo ion channels, and that other calcium-signaling dependent pathways are not involved, the team bypassed PLC signaling by expressing a phosphatase that also breaks down the membrane phosphoinositides but does not result in downstream signaling effects. This direct depletion of phosphoinositides also resulted in the block of Piezo channel activity. Further in vitro experiments showed that it is the PLC delta isoform that is necessary to dampen the mechanically stimulated ion channels (rather than the beta version). Typically, PLC beta signals through G protein-coupled receptors while PLC delta signals by activating calcium ions.

“This work links how a chemical stimulus can indirectly influence a mechanical process, at least at the cellular level,” Philip Gottlieb, a biophysics researcher at the University of Buffalo in New York who was not involved in the work, told The Scientist in an e-mail. “The supposition is that mechanically induced pain can be affected by a chemical that is known to activate the TRPV1 [ion channel yet appears] unrelated to the mechanically induced response.”

The capsaicin mechanism likely involves other signaling pathways, but inhibition of Piezo channels makes sense in the context of reducing pain, said Rohacs. Another pain modality modified by capsaicin is thermal pain, Rebecchi noted.

Still, to Rebecchi’s mind, “it is a huge leap to go from channel activities in an artificial heterologous expression model in vitro to sensation of pain.” Gottleib agreed: “There remain many questions including how this will play out in animal models.”

One question is how inflammation is coordinated with pain perception and sensitivity. Balla said he would like to see how this pain-perceiving neuronal pathway interacts with inflammatory signaling molecules like bradykinin, an inflammation-mediating peptide that indirectly activates TRPV1 ion channels. This would help researchers better “understand the key players acting in concert in pain perception,” said Balla.

I. Borbiro et al., “Activation of TRPV1 channels inhibits mechanosensitive Piezo channel activity by depleting membrane phosphoinositides,” Science Signaling, doi: 10.1126/scisignal.2005667, 2015.

http://www.the-scientist.com/?articles.view/articleNo/42153/title/How-Hot-Peppers-Can-Ease-Pain/

How To Identify And Manage Nerve Damage Symptoms

Today's post from littlethings.com (see link below) is yet another list of things to do to identify and help with neuropathy. (Why do we all love lists so much...one of the features of the 21st century!?) Despite the many self-help lists on the internet, this is a very useful one, especially for people new to neuropathy, who have difficulty understanding all the medical science their doctor has thrown at them. It explains simply what neuropathy is and how it can affect you and goes on to provide several ideas for learning to manage the disease. Many experienced neuropathy sufferers will be aware of most of what's said here but equally, many will benefit from the clear description and practical ideas. It's at least a starting point for further research.

Neuropathy: 12 Ways To Identify And Manage This Painful Disease
Laura Caseley 2016

Aches and pains are part of life. Everyone experiences a twinge here and a pang there, but what happens when it becomes all too frequent and severe, to the point where it’s getting in the way of your life?

However, if your aches, pains, and stiffness cause extreme changes in your body — like excess sweating, loss of bladder control, and high blood pressure — you might be suffering from neuropathy, a little-known but complex disease of the nervous system.

Neuropathy comes in many forms and can affect either just one nerve — in which case it’s called mononeuropathy — or several —and then it’s called polyneuropathy.

It can come on slowly over many years, or start all of a sudden. It can also come as a result of treatment for another condition, in which case it’s called peripheral neuropathy.

Anything that affects your nerves is serious business, because your nerves control, well, everything.

Not only to they allow us to experience the world via the sense of touch, but they also control organs and prompt the body to respond involuntarily to temperature and other factors. When a nerve is upset, it can cause pain in everything from your legs to your teeth.

If you’re concerned that something might be amiss with your nerves, check out the symptoms of neuropathy below. And if you think you might have it, see the ways you can soothe it at home.

Typically, people with neuropathy will have to take medical steps with the help of a doctor or specialist, but these at-home tips can be used alongside medical therapies — with a doctor’s permission, of course.

What Is Neuropathy?

Neuropathy is a disease of the nerves that impairs motion, gland or organ function, and sensation. In total, it affects some 24 million Americans.

Common causes include heavy alcohol consumption, immune system diseases, traumatic injury, celiac disease, hypothyroidism, radiation and chemotherapy, and viral infections.

About 30% of cases are also associated with diabetes. Certain classes of antibiotics can also be causes, and sometimes, neuropathy can also be congenital.

Neuropathy can take several forms, but there are some common symptoms.

The best way to determine exactly which nerves are effected is to to talk to a doctor or neurologist.

How Can I Tell If I Have Neuropathy?

Symptom #1: Numbness Of Limbs

Neuropathy, particularly peripheral neuropathy, is often characterized by a feeling of numbness or heaviness in the limbs, making them hard to move.

Numbness may also appear in other parts of the body, but it’s most commonly felt in the arms and legs.

Symptom #2: Muscle Weakness

Lifting things and even moving around becomes increasingly difficult with neuropathy, which makes the muscles feel weak and tired.

Some people also experience tremors.

Symptom #3: Difficulty With Coordination

As the muscles become increasingly numb and weak, it can start to effect motor skills.

Depending on which nerves the neuropathy is affecting, this can make fine motor functions like writing difficult, and can even affect walking and balance.

Symptom #4: Stabbing Or Burning Pain

Tingling, stabbing, burning, or pins-and-needles pain is also very common with neuropathy, as nerves misfire in your body.

Some people also develop allodynia, in which even light touches to the skin result in sharp pains.

Symptom #5: Bowel And Bladder Problems

If the autonomic nervous system is affected, it can also lead to issues with the bowels and bladder, typically constipation and difficulty urinating.

If you suspect you might have neuropathy, be sure to talk to your doctor. He or she can create a management plan to help your symptoms.

How Can I Manage Neuropathy?

Remedy #1: Avoid Gluten, Refined Sugars, And Trans Fats

After speaking to your doctor and getting their professional opinion, you can try managing your symptoms with a few simple life changes.

There’s a correlation between celiac and neuropathy, and many people with neuropathy seem to have some level of gluten sensitivity, so try cutting it out of your diet.

Gluten, along with refined sugars, can cause inflammation in the digestive system and increase blood sugar, which can cause damage to nerves.

This is also especially true for cases in which diabetes is involved.

Alcohol should also be avoided.

Remedy #2: Spice Up Your Meals

Cayenne pepper is a great additive anyway, but even better if you have neuropathy.

It has a high content of capsaicin, the compound that makes things spicy. Capsaicin is also a natural pain reliever and improves circulation throughout the body.

You can add a sprinkle to your meals, and if you don’t like spicy food, you can also take capsaicin as a supplement.

Remedy #3: Take A Hot Shower

Just like the heat from capsaicin helps from the inside, heat from a hot shower will help with pain from the outside.

It feels great, and it also helps improve circulation and to relax muscles. A hot bath works, too.

Remedy #4: Take Care Of Your Feet

Numbness or diminished feeling in the feet can be especially dangerous, because you can injure them without even realizing it.

Neuropathy is very common in the feet, and so if you’re dealing with it, your feet will need extra attention.

Wear comfy socks and shoes and make sure your tootsies are clean and free of any cuts, and keep your toenails short and cut straight across.

Remedy #5: Try Acupuncture Or Chiropractic Care

In addition to a your regular doctor, visiting a chiropractor or acupuncturist can also help soothe the aches and pains.

These treatments can help improve circulation, which gets oxygen and nutrients to the affected nerves, helping them function better.

Remedy #6: Take Your Vitamins

Getting the right vitamins, especially your B vitamins, is very important when it comes to neuropathy.

You can take these as supplements (just don’t take more than 50 mgs of B-6 per day), or stock up on B-rich foods like beans, lean meats, nuts, and fruits and vegetables.

Remember, be sure to speak to your doctor before beginning any new supplement or dietary plan.

Have you ever suffered from nerve issues? What was the remedy that helped you the most?

Let us know in the comments, and SHARE this important information with everyone you know!

http://www.littlethings.com/guide-to-neuropathy/

How To Remember What Causes Neuropathy

Today's video is a sort of visual aide memoire about neuropathy for medical students. The speaker goes over most of the main causes and from this some people may learn something they didn't know. He mentions everything on the I-Pad screen except HIV!
Hallo! HIV...say it...go on...it won't kill you and you can't catch it by saying it. It's amazing and very irritating, how many people are simply embarrassed by the word...even in 2012. Nevertheless, the video shows how difficult neuropathy is to pin down to one sort, or one cause.

How Do You Know If You Have Neuropathy

Today's post from neuropathytreatment.co (see link below) is another one providing basic information for people experiencing nerve problems for the first time. It's short and to the point but sums up the symptoms and problems very well. Useful also for friends or relatives who may not understand what's happening to you.

Tingling, Burning, Numbness in Your Feet, Could It Be Peripheral Neuropathy?
MAY 1, 2013 BY WESLEY MILNE

Recognizing your symptoms

For those who are undergoing the perpetual trauma of feeling tingling, burning, and numbness in the feet must realize that this condition is not a disease but the symptoms of a very vexing and prevalent condition known as peripheral neuropathy. Peripheral neuropathy is usually diagnosed at an advanced stage or after a subsequent period. Majority of peripheral neuropathy sufferers spend years searching for the most superlative treatment plan and seeking the best diagnostics. But most of the doctors order a list of tests with various treatment plans only to have their patient seek elsewhere for better pain relief methods. Peripheral neuropathy is not just a disease. It is a chronic nerve disorder which is extremely challenging to combat and to live life with. The feeling of pins and needles while walking and the creepy numbness that seems to crawl up your limbs and render your legs devoid of sensations is an unpleasant reality. Even the most advanced techniques and treatment plans are accepting defeat to this notorious monster.

What exactly is peripheral neuropathy?

Our body’s mechanism relies on two main important systems: the central nervous system and the peripheral nervous system. The central nervous system houses the brain and the spinal cord, and the peripheral nervous system consists of the peripheral nerves interlining the entire body. The peripheral nervous system again branches into two main functional classifications: somatic nervous system and autonomic nervous system. The somatic nervous system consists of the sensory nerves which send signals to the brain and the spinal cord and the motor nerves which send signals to the muscle nerve fibers. The autonomic nervous system is taxed with the function of sending signals to the muscles of the organs and glands, and controlling our involuntary but most prominent body functions such as digestion, breathing, circulation, excretion, sexual function, etc.

Individuals who are at risk of peripheral neuropathy are:

Cancer patients and those who are undergoing chemotherapy
People who are exposed to toxins and metals like lead, mercury, and arsenic
People who are suffering from malnutrition or nutritional disorders
HIV/AIDS, Hepatitis B and C sufferers
Diabetics
Alcoholics
Autoimmune disease patients
People with inherited neuropathy like Charcot-Marie tooth disease
People who have had shingles
Patients with tumors are also likely to suffer from peripheral neuropathy

What are the main symptoms of peripheral neuropathy?

Apart from burning, tingling, and numbness in the feet and hands, peripheral neuropathy adversely affects other functions too. Mild to moderate and excruciating pain is experienced in the hands and feet depending on the amount of nerve damage. Some people even suffer from sharp pins and needles like sensations which can make walking impossible.

Loss of sensitivity is also quite common in peripheral neuropathy. Increased sensitivity is also a highlighting symptom that can cause discomfort and irritation from someone’s touch, sharp objects, and even the clothes on the body can feel like parched paper. Uneasiness can cause sleeplessness at night and increased fatigue and depression.

If the autonomic nerves have received damage, the patient will feel a general anxiety and serious symptoms will follow such as constipation, diarrhea, urinary incontinence, sexual disorders, high blood pressure, extreme panting even with light exercise, high blood pressure even while at rest, etc.

If the motor nerves are the ones that have received injury, then the patient will be suffering from muscle cramps and weakness, have trouble keeping a firm grasp on things, and have decreased flexibility and coordination.

How do the peripheral nerves receive damage or injury?

Growing scientific research has shed some light in to the growing concern of nerve damage. One contemplated research brought forth the theory of anoxia. Anoxia means oxygen deprivation. When the nerve cells are deprived of their required levels of oxygen, they contract in order to consume less oxygen. This increases the gap between the cells (the cells are naturally a little distance apart from each other) and when nerve impulses or signals are passing through, they cannot cross the bigger void and the nerve messages are lost. This causes nerve malfunction and ultimately leads to peripheral neuropathy.

During an infection, disease or over exposure to dangerous chemicals, the body is consumed with free radicals. These free radicals tend to take up all the oxygen, thus depriving the nerve cells of their nutrition.

Why is peripheral neuropathy pain untreatable?

Peripheral neuropathy can be considerably treated with over the counter and prescription medications, but the pain cannot be treated permanently. The nature of the neuropathy pain renders it as an untreatable disease. There has not been ample research guided in this field which despairs the sufferers of neuropathy. Though the pain can be relieved temporarily with lidocaine patch and opioids, much advancement needs to be made to conquer the peripheral neuropathy pain and restore life and happiness back in to the lives of the neuropathy sufferers.

http://neuropathytreatment.co/tingling-burning-numbness-in-your-feet-could-it-be-peripheral-neuropathy/