HNPP · Medication · Physical Health

What to avoid with HNPP

Taxol
Rotation of the model of the Paclitaxel molecule – Andrew Ryzhkov

An interesting discussion emerged on one of the HNPP groups about how certain products can actually have a reverse effect on the nerves. While there are hundreds of results when it comes to what to eat or how to help neuropathic symptoms, it’s rather a different situation when you attempt to search foods, supplements or drugs to be cautious about. So what should we keep an eye on?

Disclaimer: Please ask your medical practitioner or occupational therapist for more information. This article is based on various research, journals and testimonies.

Vitamin C

This a hot topic of debate with some saying that high doses of vitamin C can actually reduce the amount of PMP22 produced, while others saying they have seen some benefits through increased energy. So what’s the deal?

While there is little research to show the effects of vitamin C on HNPP specifically, there has been studies revealing how it affects the inherited condition Charcot Marie-tooth syndrome.

blossom-plant-fruit-sweet-flower-bloom-1199888-pxhere.com

In the 2004 study Ascorbic Acid Treatment Corrects the Phenotype of a Mouse Model of Charcot-Marie-Tooth Disease, the authors claimed to see an improvement from ascorbic acid (vitamin C). They say: “Ascorbic acid treatment resulted in substantial amelioration of the CMT-1A phenotype, and reduced the expression of PMP22 to a level below what is necessary to induce the disease phenotype.

“As ascorbic acid has already been approved by the FDA [Federal Drug Administration] for other clinical indications, it offers an immediate therapeutic possibility for patients with the disease.”

While the authors saw benefits by reducing the expression of PMP22, it may be difficult to say whether this will have a reverse effect for those with HNPP, which consists of already having a deletion or defection of one of two of these genes.

On the other hand, a study of 277 persons with CMT1A found no significant effect of a daily 1.5-g dose of ascorbic acid after two years. The researchers of the 2011 study Ascorbic Acid in Charcot–Marie–Tooth disease type 1A states: “With respect to the size of the effect of ascorbic acid, if the effect is so small that only a biomarker can detect it, it would be unlikely to be clinically significant in a short-term study but might be important in the long term.

“Findings of this study suggest that ascorbic acid is not efficacious in adults with CMT1A.”

As with any supplements, it’s important not to take an excessive amount. As Thomas Bird, MD, writing for GeneReviews, a genetic resource page for clinicians, states: “No specific treatment for the underlying genetic or biochemical defect exists and no special diet or vitamin regimen is known to alter the natural course of HNPP.”

Always check with your medical practitioner about possible effects and let them know about your condition.

Vincristine 

Vincristine is a known chemotherapy drug used to treat several types of cancer including acute leukaemia, malignant lymphomas and carcinomas. If you’re suffering from multiple illnesses, this is where it gets complicated.

Vincristine_3D
Vincristine 3D structure

The medication is said to be potentially “toxic” to those with peripheral neuropathy due to its side effects that resemble the same symptoms. These can include numbness, pin prick or a tingling sensation to full-blown motor difficulties and neuritic pain.

In one study, 61 per cent of the 23 patients treated for lymphoma developed neuropathy, while only 14 per cent of the 37 patients with other malignant diseases developed these symptoms.

There has also been a case report of a patient with a familial variant of Charcot-Marie-Tooth syndrome. After receiving two 2mg dosages, his weakness secondary to peripheral neuropathy rapidly progressed to complete paraplegia. Acute acoustic nerve palsy has also been reported.

Hence letting your medical team know about the condition that you have and how you are affected can help avert a crisis such as this.

Taxol

Paclitaxel, sold under the brand name Taxol among others, is a chemotherapy medication used to treat a number of types of cancer. This includes ovarian cancer, breast cancer, lung cancer, Kaposi sarcoma, cervical cancer, and pancreatic cancer.

toxic
“Toxic Neuropathies” – Kelley’s Essentials of Internal Medicine, H. David Humes, 2001

Drugs and medications such as taxol that are known to cause nerve damage should be avoided, says Vinay Chaudry, MD, in a 2003 study Toxic Neuropathy in Patients With Pre-Existing Neuropathy. Chaudry says that six patients with pre-existing neuropathy, who received “non-toxic” dosages of known neurotoxic agents including taxol, had significantly worsened. He concludes: “functionally disabling toxic neuropathy can occur in patients with pre-existing neuropathy at standard doses.”

The Charcot-Marie-Tooth Association has maintained a “Medical Alert” list of potentially neurotoxic medications. They define taxol as a “definite high risk” to those with the condition even if the individual may not present any symptoms.

Fluoroquinolones

The fluoroquinolones are a family of broad spectrum, systemic antibacterial agents that have been used widely as therapy of respiratory and urinary tract infections. It is an antibiotic used to treat some infectious or even common diseases.

However, in 2016, the U.S. Food and Drug Administration advised that the serious side effects associated with fluoroquinolone antibacterial drugs generally outweigh the benefits for patients with neuropathic issues.

“The peripheral neuropathy reported with fluoroquinolone administration can be severe, debilitating, and permanent.”

A Case Report on a Rare but Serious Debilitating Side-Effect of Fluoroquinolone Administration – Jacquelyn K. Francis and Elizabeth Higgins, MD, 2014.

In a statement, the FDA said: “An FDA safety review has shown that fluoroquinolones when used systemically (i.e. tablets, capsules, and injectable) are associated with disabling and potentially permanent serious side effects that can occur together. These side effects can involve the tendons, muscles, joints, nerves, and central nervous system.”

In one 2014 case report for the Journal of Investigative Medicine, a 57-year-old woman was treated for a urinary tract infection with a ciprofloxacin, an antibiotic under the fluoroquinolones umbrella. She had already been in remission for 12 years after suffering from trigeminal neuralgia. Two years after the initial onset of symptoms, she continued to suffer from polyneuropathies chronologically related to ciprofloxacin use.

As the report concludes: “the peripheral neuropathy reported with fluoroquinolone administration can be severe, debilitating, and permanent. It is for this reason that physicians need to practice due diligence when prescribing not only antibiotics, but any drug.”

While it’s important to understand how the wrong drugs can interact with hereditary neuropathy, it’s even more essential to talk about it with the right people. Letting health professionals know about your current situation will allow them to prescribe the right medication. As one HNPP’er says because there’s an assumption that something is safe, doesn’t mean it’s safe for us.

HNPP · Medication · Physical Health

Coping with multiple conditions including HNPP

multiple chronic multimorbidity hnpp hereditary neuropathy

Many people living with HNPP have the arduous task of coping with more than one condition on top of the neuropathic symptoms. From dystonia and asthma to peripheral oedema, or mental health conditions, those with HNPP battle a range of conditions. So how do you deal with multiple diagnoses?

Coping with multiple issues can be a bit overwhelming, and it adds a layer of challenge that might not be present for the friend of a friend who has one of your illnesses in common, but runs 5k races.

“In people with multiple chronic conditions, physical and emotional symptoms can compound and build off of each other, resulting in a larger negative effect on their daily lives.”

“Challenges of self-management when living with multiple chronic conditions”, Clare Liddy, 2014

More than one in four Americans have multiple (two or more) concurrent chronic conditions (MCC), according to the U.S. Department of Health & Human Services. As a result, people with several different illnesses tend to have poorer day-to-day functioning. In England, UK, the figure is said to be about 2.9 million people with multiple long-term conditions and the number is thought to be rising.

A 2012 study in the British Medical Journal says that doctors are still unprepared with dealing with ‘multimorbidity’ – that is, the coexistence of multiple chronic diseases and medical conditions in one individual. The authors say: “Despite the increasing numbers of patients with multimorbidity, evidence on the effectiveness of interventions to improve outcomes in such patients is limited.

“The clinical care of these patients is complex and the evidence base for managing chronic conditions is based largely on trials of interventions for single conditions, which too often exclude patients with multimorbidity.”

The impact of multimorbidity

And research shows that multimorbidity has an additional impact on those individuals including emotional challenges of dealing with a group of chronic conditions. Clare Liddy, MD, an Associate Professor in the Department of Family Medicine at the University of Ottawa in Ontario, says “In people with multiple chronic conditions, physical and emotional symptoms can compound and build off of each other, resulting in a larger negative effect on their daily lives.

“These symptoms are interdependent and symptoms of one condition can be aggravated by the symptoms, treatment, or medications of another condition. Some symptoms might overshadow others and reduce the patient’s ability to manage his or her care.”

Liddy suggests ‘re-prioritising’ to learn to cope with the negative effects of the various illnesses.

  • Changing cognitive approaches – patients with multiple conditions found that changing their thinking or conscious mental processes had a positive effect on them. Living with multiple chronic conditions became a way of life for some people, who reported fluctuating between “living a life and living an illness.” Liddy notes the current changes in those with multimorbidity:
    • reframing and regulating the amount of attention given to their situation
    • engaging in life and body listening
    • relinquishing control to another source – faith and doctors seem to be heavily relied upon
    • changing their beliefs (for example assigning new meanings to daily chores or activities)
    • self-monitoring – keeping an eye for any changes
    • self-advocacy – approaching and asking for help whenever necessary.

Other important tasks to note include:

  • Social support – an important part of dealing with comorbidity is to have a support network of some sort. However, if you have the incorrect kind of support, friends and family may become a barrier to self-management, and they may end up interfering where unnecessary. The key is to create clear-cut boundaries and let them know how and when they can help you. Group activities such as walking have been shown to help with psychological issues, such as loneliness and depression. Joining a support group can also help.
  • Read about your condition extensively – the better equipped you will be when approaching your healthcare providers if you know what to expect. At times, you may find practitioners giving you contradictory information. Note it down, and then approach them carefully with what you have observed.
  • Multiple care approach – you may detect that some medical practitioners are still not completely skilled at dealing with multiple conditions, they may prioritise one condition over the other, so it’s important to keep that in mind and see that they can also deal with the other issue(s) in a similar manner. The best chance of this is to have a multidisciplinary team working with your needs.
  • Organise your medication – if you have lots of medicines to take, it can be hard to keep track. Some people find a dosette box or pill organiser (a plastic box which is separated into different compartments for each day and each time of day) helpful. You can get these from pharmacies or buy them online. Usually you would fill these once a week – ask someone to help you if necessary. Or you could try making a daily chart to show when you should take each medication. Or you could label your medication containers with the time you should take them, or keep medication where you are likely to take it at the time – for example, put breakfast tablets in the kitchen, and bed time pills on your bedside table. If you can’t manage with taking 18 tablets a day, it may be worth revisiting your doctor and being honest about it.
  • Take it day-to-day – this means prioritising your needs on any given day, for example, if you feel more tired due to one of your illnesses, then rest, or if you’re feeling depressed more so than usual, then address those needs first.

It’s unbelievably difficult to cope with one let alone several chronic illnesses. And it’s exacerbated by the fact that doctors are only just coming to see how big an impact this is having on society as a whole. However, thinking of it as a list of things to keep crossing off, over time with good care, more coping skills, better management of medication changes, surgeries and therapies, it will seem that tiny bit easier.

HNPP · Medication

Side effects of medication for HNPP

medication HNPP hereditary neuropathy

After discovering that suffering from a fever and chronic fatigue for the past two weeks was down to my medication left me feeling alarmed. So is it a case of the drugs don’t work – they just make you worse?

It is common for people with peripheral neuropathy to experience different degrees of pain. Hence it’s important to identify the type of pain medication that will work best for managing painful peripheral neuropathy symptoms, that also works with your body chemistry, and compliments other treatments.

Disclaimer: Please check with your doctor or practitioner before taking new medicines. Make sure you’re not allergic.

Differences between pain

Acute pain usually comes on suddenly and is caused by something specific. It is sharp in quality. Acute pain usually does not last longer than six months. It goes away when there is no longer an underlying cause for the pain.

Chronic pain is pain that is ongoing and usually lasts longer than six months. This type of pain can continue even after the injury or illness that caused it has healed or gone away. Pain signals remain active in the nervous system for weeks, months, or years. Some people suffer chronic pain even when there is no past injury or apparent body damage.

The following are the main types of medication that HNPP sufferers tend to use.

Amitriptyline

Amitriptyline is used for headaches and depression, as well as neuropathic pain. It reportedly provides pain relief in about 1 in 4 (25%) more people than does a placebo, and about 1 in 4 (25%) more people than placebo report having at least one adverse event, which may be troublesome, but probably not serious. The most common side effects, experienced by 5-15 per cent of people, include dizziness, drowsiness, dry mouth, nausea, sometimes insomnia and constipation. Apparently it is slow-acting so it can take around six to eight weeks to show any effect.

Duloxetine

Otherwise known as Cymbalta, is commonly used to treat bladder problems, depression as well as neuropathic pain. According to a study for the Cochrane Database of Systematic Reviews, most people taking duloxetine  however will have at least one side effect. These are mostly minor and the most common are feeling sick, being too awake or too sleepy, headache, dry mouth, constipation or dizziness. About one in six people stop duloxetine because of side effects. Serious problems caused by duloxetine are very rare though some HNPP sufferers have reported muscle spasms with this medication.

Pregabalin

Branded under the name Lyrica is among the most commonly used to treat peripheral neuropathy and specifically HNPP.  It can be used to treat epilepsy, headaches or anxiety. It is said to slow nerve impulses that may cause seizures and blocks nerve related pain. While most can take it with it no problems, some of the side effects include dizziness, extreme drowsiness, headache, dry mouth, peripheral oedema (accumulation of fluid causing swelling), weight gain, blurred vision, motor in coordination and ataxia (tremor or lack of muscle control) occurring in 1-10 per cent patients at lower doses.

Gabapentin 

Commonly known by its brand name Neurontin, it falls into a class of drugs known as anti-convulsants – or drugs used to treat epileptic seizures as well as relieve nerve pain. Only 14 per cent of patients taking gabapentin for chronic neuropathic pain report meaningful relief, according to another report by the Cochrane Database of Systematic Reviews. In a recent study by an independent organisation looking at the effectiveness of gabapentin and other drugs for treatment of nerve pain, as few as one in ten patients experienced a reduction in pain.

Two of the most common side effects of gabapentin are fatigue and weight gain. Many report excessive sleepiness and difficulty functioning while taking gabapentin. Significant weight gain has also been reported among some taking the drug – although the risk is generally low.

A study by the University of Miami Department of Neurology found that weight gain is more common among high dose users. In their study of 28 patients taking over 3000 mg/day, 10 patients experienced weight gain of 10 per cent of their baseline weight. That being said, some HNPP’ers have found relief from it, so it’s important not to knock anything until you try it.

When dealing with pain, it is worth giving whatever you can a chance and working with your doctor to try different approaches so that you find the particular approach that is right for you, which brings you the benefits of pain relief, allows you to do more, and gives you the quality of life that you want.

HNPP · Medication · Physical Health

Patient-doctor relations and HNPP

Doctor Patient HNPP hereditary neuropathy

One of the most important parts of your journey with any kind of peripheral neuropathy is to establish good relations with your doctor. Having recently had a bad experience with a locum GP, only reiterates the need for clear communication and real understanding, especially with a condition that seems to relatively unknown.

A strong emotional fit between how a patient ideally seeks to feel and their doctor makes it more likely that the patient follows the doctor’s health advice, according to a study by Stanford psychology Associate Professor Jeanne Tsai and Tamara Sims.

Sims said that by learning how patients want to feel and tailoring treatments accordingly, physicians can enhance their patients’ trust in them. Finding out what matters to a patient in terms of goals and values is important, she noted.

“This may open the lines of communication so that not only do patients listen more, but they open up and disclose more information to their provider,” she said in an interview.

Finding a specialist:

Finding a doctor who has the clinical training to diagnose and treat neuropathy is not an easy task, however. As Russell L. Chin, M.D. Associate Professor of Clinical Neurology at Weill Medical College of Cornell University states, “there is insufficient training even in medical school in the clinical aspects of neuropathy”.

Disclaimer: Everything written is based on personal and other’s testimonies, available journals and research.

Then there is the fact that there is no one test to diagnose neuropathy and 99 per cent of what the doctor must use is subjective and you have a cocktail for a major patient-doctor problem. So what can you do?

Dr Norman Latov, who specialises in neurology at Weill Cornell Medicine in New York, and author of Peripheral Neuropathy: When the Numbness, Weakness and Pain Won’t Stop, states early diagnosis and if possible treatment is critical to preventing severe disability. So where to begin?

  • First understand that peripheral neuropathy is a neuromuscular disease.  You need to find a Board Certified Neuromuscular Neurologist as this increases the odds of finding one who is able to diagnose and treat neuropathy. In this case, I found the name of a hospital and doctor through a similar hereditary neuropathy based organisation (CMT UK) and they were able to give more details.
  • For those in the US, you may want to visit a neuropathy centre and the NSN website has a list of doctors and centres. It is worth reading  LtCol Eugene B Richardson’s experience on finding a doctor, in which he had to try out several before settling on someone more suitable.
  • Ask a nurse at the local hospital or doctor’s office. Ask a support group leader or even ask another patient in a support group. Everyone has different pieces of the jigsaw in regards to information, so it’s worth searching around for it.
  • Avoid centres and doctors who claim to cure all neuropathies and offer over-stated claims. This again is mostly for US-based sufferers, as there are more private consultants that offer this kind of treatment.

Once you have found someone suitable, it is important to establish a rapport and relationship in moving forward. According to John A. Senneff  in Numb Toes And Other Woes, you need to be as specific as possible in describing your symptoms and health concerns, including when the symptoms started, what they feel like, and lifestyle changes you made when they started, anything in particular that triggers them or anything that relieves your symptoms. [1]

What should you do once you have found a doctor?

In terms of working with your doctor, following are some of the suggestions given:

  • Educate yourself – Your doctor should not be your only source of information. For example, pharmacists and patient support groups can provide useful information.
  • Ask questions – If you have not call from a newspaper or magazine you would like to discuss with your doctor, don’t be reluctant to take the material with you to your appointment. If you disagree with what your doctor is prescribing do it in a way not to put him or her on the defensive. You may need to be tactful when asking.
  • Disclose symptoms and medication – For your initial session remember to mention all of your medications including prescription as well as over the counter. Also be prepared to discuss your symptoms in detail.
  • Discuss your medical history in depth – Don’t be afraid to divulge information that might be relevant. Your doctor will be much more effective in dealing with your problem if he or she knows as much about the surrounding circumstances as you do.
  • Be honest – even if it’s uncomfortable with meeting to unhealthy behaviour. It is necessary to tell your doctor the truth.
  • Take notes – if the explanation is complex have your doctor write it down for you.
  • Get a second opinion – if your doctor advises an invasive test or therapy that carries risk.[2]

Room for improvement definitely exists in the patient-doctor relationship. As Tsai and Sims note, physicians should recognise that their patients have “effective ideals” that might influence how they respond to physicians. In looking at how doctors can improve, the authors add:

  • Physicians could evaluate their patients’ ideal affect in light of whether there are more effective health care providers or treatments consistent with those ideals.
  • If none exist, physicians might discuss with patients how their ideal affect might help or hinder specific health care recommendations and treatments.
  • More effective interventions aimed at educating clinicians about the importance of ideal affect in health care should be developed.

No matter how difficult it may seem sometimes, there are physicians out there who understands the value of the doctor patient-partnership for patients with hereditary neuropathy.

  • 1. Page 237-238, “Numb Toes And Other Woes”, Senneff, John A., 2001.
  • 2. Page 236, “Numb Toes And Other Woes”, Senneff, John A., 2001.
HNPP · Medication · Physical Health

Can medical marijuana help pain from HNPP?

cannabis marijuana hnpp hereditary neuropathy

This is a super controversial subject, especially since it’s part of a wider global debate on whether to legalise marijuana for those with chronic illnesses. I say this as some medical professionals I’ve spoken to have recommended it to ease nerve pain from HNPP. It isn’t for everyone for a variety of personal reasons and it is obviously still illegal in most countries.

With marijuana, or cannabis, the advantages include the fact that there has been a long history of use and some evidence of benefits – many patients swear by the herb to relieve their pain, and physicians see it helping those who have few other options. To others, medical marijuana – which lacks both standardised formulations and rigorous clinical testing – represents a challenging deviation from the ideal of evidence-based medicine.

The issue is that one can generalise that medical cannabis has a higher level of testing standards required to meeting the medical standards for dispensing in areas where it has been legalised. These standards do not always apply to recreational use. But this may differ from country to country, from state to state.

This is more of a hypothetical situation for many.

Disclaimer: Everything written is based on personal and other’s testimonies, available journals and research. Please check with your doctor or practitioner before taking new medicines, and do not break your country’s laws. 

So is it helpful?

According to Medical Marijuna Inc, a pro-marijuana think-tank, two major cannabinoids found in cannabis, tetrahydrocannabinol (THC) and cannabidiol (CBD), activate the two main cannabinoid receptors (CB1 and CB2) of the endocannabinoid system within the body.

These receptors regulate the release of neurotransmitter and central nervous system immune cells to manage pain levels.

Mark Ware, a pain clinician at McGill University, Montreal, Canada, explained that the CBDs act as modulators, “circuit breakers,” on numerous nervous pathways. Within these pathways, CB receptors are located at many key sensory intersections.

neuropathy

Once the nerve is stimulated by an action potential (normal nerve conduction) endocannabinoids such as anandamide flow retrograde up to the presynaptic terminal to dampen the forward flow of nervous information. This leads to less pain impulses being generated and perceived. This decrease is interpreted as pain relief.

Dr Rosemary Mazanet has done some extensive research on the use of medical marijuana on neuropathic pain. Writing for the Foundation for Peripheral Neuropathy, she said: “Although CBD and THC act differently in the body, they seem to have many of the same medical benefits.  Unfortunately, most of this evidence comes from animals, since very few studies on cannabis have been carried out in human patients.”

She adds: “Patients should treat marijuana for medical use like they would any prescription and avoid operating a motor vehicle or heavy machinery, performing child or elder care, and making important decisions while under treatment.”

Unlike opioids, marijuana cannot cause someone to stop breathing, no matter how much they ingest.

What are the side effects?

  • Increased heart rate
  • Dry mouth
  • Reddening of the eyes
  • Muscle relaxation
  • Sensation of cold or hot
  • Anxiety and paranoia are the most commonly reported side effect of smoking marijuana with a high THC content
  • Alteration of conscious perception
  • Feelings of well-being, relaxation or stress reduction, increased sensuality, increased awareness of sensation, increased libido, and creativity
  • With very high doses, THC can induce auditory and visual hallucinations. THC should be used only under the care of a physician by anyone with a mental health history.

Effects of cannabis

Peak levels of cannabis-associated intoxication occur approximately 30 minutes after smoking.  The total short-term duration of cannabis effects when smoked is based on the potency, method of smoking (vape) and how much is smoked.  Any acute effects that accompany cannabis use usually abate after 6 hours.

When taken orally (in the form of capsules, food or drink), the effects take longer to manifest initially, and generally last longer, typically for 4–10 hours after consumption.  Taking marijuana in the form of edibles can have unpredictable effects, since they are delayed and thus harder to predict.

Where is it legal for medicinal use?

Smoking weed is legal to some extent in 30 states in the USA, though the majority only allow consumption for medicinal purposes. So where has medicinal marijuana been legalised?

Countries where medicinal use is legal  Information on how it is used
Argentina Decriminalised for personal use. Medical cannabis is legal in Chubut since September 2016, and in Santa Fe since November 2016.
Australia Legal for medicinal and scientific purposes. Decriminalised for personal use in the Northern Territory, South Australia and the Australian Capital Territory.
Bosnia & Herzogovina In 2016 it was announced that the Ministry of Civil Affairs had formed a task force to explore the legalising of cannabis and cannabinoids for medical purposes.
Canada Legal with government issued licence for medical or industrial purposes. In April 2016, Health Minister Jane Philpott announced that new legislation would be introduced in spring 2017 to legalise and regulate cannabis in Canada.
Chile Since 2014, Chile allows the cultivation of cannabis for medical purposes with the authorisation of The Chilean Agriculture Service (SAG). Sale of marijuana-derived medication is allowed on prescription in pharmacies, from December 2015.
Colombia Legal for up to 22 grams for personal use. No limit for medical or scientific purpose, and if licensed by the “National Anti-narcotics Council”
Croatia In 2015, the Ministry of Health officially legalised the use of cannabis-based drugs for medical purposes for patients with illnesses such as cancer, multiple sclerosis, or AIDS.
Czech Republic Medical use of cannabis on prescription has been legal and regulated since 2013
Finland Since 2006, use of medical cannabis has been possible under a special license. In 2014, 223 licenses were issued.
France Legislation permitting the sale of medications containing cannabis derivatives was enacted in June 2013.
Germany On May 4, 2016 the Cabinet of Germany decided to approve the measure for legal cannabis for seriously ill patients who have consulted with a doctor and “have no therapeutic alternative”. German Health Minister, Hermann Gröhe, presented the legal draft on the legalisation of medical cannabis to the cabinet, which took effect in early 2017.
India Legal or tolerated in several states such as West Bengal, Gujarat, Bihar, Odisha and the North East.
Israel Illegal for recreational use, but limited medical uses have been permitted since the 1990s
Italy Licensed cultivation for medical and industrial use is strictly regulated.
Jamaica On 25 February 2015, the Jamaican House of Representatives passed a law decriminalising possession of up to two ounces of cannabis.
Macedonia Medical cannabis legalised in 2016.
Mexico In December 2016, Mexico’s Senate voted to legalise marijuana for medicinal and scientific purposes – this was approved by the Chamber of Deputies in April 2017.
Netherlands Personal possession has been decriminalised since 1976, and cannabis products are only sold openly in certain local “coffeeshops”
Philippines Congress introduced House Bill No. 4477 in 2016, known as the Compassionate Use of Medical Cannabis Act, which would legalise the use of medical marijuana.
Poland Legal for medicinal use only
Portugal In 2001, Portugal became the first country in the world to decriminalise the use of all drugs
Puerto Rico In 2015 the Governor of Puerto Rico signed a executive order to legalise cannabis for medicinal use only
Romania Medical cannabis legalised in 2013.
Slovenia Cannabis-based drugs are legal for medical use, but not cannabis itself.
Turkey The cultivation of marijuana is legal in nineteen provinces in Turkey for medicincal and scientific purposes. However, with permission this can also be conducted in other provinces too.
USA Illegal at the federal level but legal at the state level in Alaska, California, Colorado, Maine, Massachusetts, Nevada, Oregon and Washington, and in Washington, D.C.; decriminalised in eighteen states, medicinal legal in 25 states and Guam. All Indian Reservations are allowed to regulate cannabis laws; laws vary by reservation.
Uruguay José Mujica has fully legalised any use of Cannabis in Uruguay; law does not specify quantity for “personal amount”

According to the study Medicinal Cannabis and Painful Sensory Neuropathy in the American Medical Association Journal of Ethics, Dr Igor Grant said: “Our society should be able to find ways to separate the medical benefits of making a treatment available to improve lives when indicated from broader social policy on recreational use, marijuana legalization, and unsubstantiated fears that medicinal cannabis will lead to widespread cannabis addiction.”

Nothing is 100 per cent safe, but when you weigh the benefits against the risks, and if you suffer from chronic neuropathic pain, you may find a worthwhile benefit from using medical marijuana, as long as you use it responsibly and you do it legally.

HNPP · Medication · Physical Health

HNPP and Alternative Supplements

Fruits

It sounds like there are a lot of good tidbits of information as well as conflicting messages in terms of taking supplements, and other foodstuffs that are said to have wonderful healing properties.

From supporting nerve regrowth to reducing inflammation, there is a whole host of additional organic as well as synthetic tablets and herbs that can be taken with regular medication.

I personally take a selection of Vitamin B tablets and Folic Acid, which was recommended to me by a neurologist, but everyone’s body is different and reacts in different ways.

So is it necessary to take supplements? 

Regardless of the cause of your peripheral neuropathy, boosting the health of your nerves through proper diet and supplementation can help slow the spread of your symptoms. However, the sooner you and your doctor can pinpoint a cause, the quicker you can identify and begin the most effective treatment for your symptoms.

While this is by no means a comprehensive list, these medicinal and herbal suggestions have definitely gotten a lot of praise.

Disclaimer: Please check with your doctor or practitioner before taking new medicines. Make sure you’re not allergic.

Magnesium 

Spinach magnesium intake for HNPP hereditary neuropathy

Magnesium is said to help maintain nerve function, mostly by reducing pain, calming overactive nerves and relaxing your muscles. This calming effect on nerves and muscles helps reduce pain and improve mobility. According to a 2010 study, a major mechanism of pain is the excessive stimulation of a brain chemical called “NMDA.” Magnesium seems to settle down this pain-carrying neurotransmitter without the toxins of other medications.

Low levels magnesium may result in fatigue, cramping and weakness – among other symptoms.

Alternatives to supplements: 

So from where else can you get your magnesium intake?

  • Spinach
  • Pumpkin seeds
  • Beans and peas
  • Fresh fruits
  • Quinoa

Vitamin B

Salmon for Vitamin B12 intake HNPP neuropathy

One common cause of peripheral neuropathy is a deficiency of B vitamins, particularly B12. If a B12 deficiency isn’t treated in a timely fashion, the nerve damage can become permanent. It is the most important link in the chain of the various B vitamins.

However, without vitamin B2 and B6, your body’s ability to properly absorb and make use of these vitamins for the benefit of your nerves becomes significantly handicapped.

Alternatives to supplements:

The NHS website has laid out some of the foods that are high in B12:

  • Meat
  • Salmon
  • Cod
  • Milk
  • Cheese
  • Eggs
  • Some fortified breakfast cereals

Folic Acid

Folic acid, known as folate in its natural form, helps the body form healthy red blood cells and reduce the risk of central neural tube defects. Folic acid is needed to activate the B12. B6, B9 (folic acid) and B2 are needed for B1 to be absorbed.

If you’re taking folic acid supplements, it’s important not to take too much, as this could be harmful.  Folic acid can actually be absorbed by having a healthy diet. Adults need 200mcg of folic acid a day. It can’t be stored in the body, so you need it in your diet every day.

Alternative for supplements:

Folate is found in small amounts in many foods:

  • Broccoli
  • Brussel sprouts
  • Liver (but avoid this during pregnancy)
  • Spinach
  • Asparagus
  • Peas
  • Chickpeas
  • Fortified breakfast cereals

Potassium

Banana potassium hereditary neuropathy HNPP

Potassium helps generate energy so that the nerves can transmit messages. The way it does this is called the sodium-potassium pump. Essentially, there is more potassium inside your cells and more sodium outside. When the gate that allows one or the other to leave or enter the cell opens, potassium leaves and sodium enters. This “pump” generates the energy for your nerves to transmit messages.

Alternatives to supplements:

  • Sweet potato
  • White and kidney beans
  • Dark leafy greens such as spinach
  • Avocado
  • Bananas
  • Certain fish – Wild salmon, tuna, halibut, flounder, and Pacific cod
  • Milk
  • Tomato sauces
  • Dried fruits -Apricots, peaches and figs

Acetyl-L-Carnitine

Acetyl-L-carnitine (ALC) is a naturally occurring amino acid and is potentially effective at preventing peripheral neuropathy as well as lessening neuropathic symptoms once they have developed. ALC has been shown to influence neurotransmitters (NTs), including acetylcholine (organic chemical that works as a neurotransmitter) and dopamine.

Disclaimer: Please check with your doctor or practitioner before taking new medicines. Make sure you’re not allergic and it doesn’t interact with other medications.

Turmeric

Turmeric for hereditary neuropathy HNPP

Turmeric is an ancient spice commonly used in Ayurvedic and Chinese medicines to treat digestive issues, inflammation, skin conditions, and wounds. Turmeric is also known as an anti-ischemic agent, which helps in regulating blood supply to peripheral nerves. Lack of blood supply to nerves is of the key reason for these nerves not working properly.

Although there is not currently much research to support its standing as an effective anti-inflammatory or that it can benefit nerve issues, there is much anecdotal evidence that it has its advantages.

For more information on how to consume it, visit TheKitchn.com.

Hemp Oil

A slightly more controversial product is Hemp Oil or Cannabidiol (CBD). For many HNPP sufferers, this is harder to come by depending on the laws of your country. However, it is said to benefit users. Two major cannabinoids found in cannabis, activate the two main cannabinoid receptors, which is said to regulate the release of neurotransmitter and central nervous system immune cells to manage pain levels. There are foods and liquids containing hemp that can also be consumed.

Some of the most popular forms of hemp foods include:
  • Whole hemp seeds
  • Shelled hemp seed (hemp hearts)
  • Hemp oil
  • Hemp protein
  • Hemp milk

Omega 3 Oils

Walnuts omega 3 peripheral neuropathyResearch from Queen Mary, University of London suggests that omega-3 fatty acids, which are found in fish oil, have the potential to protect nerves from injury and help them to regenerate.

Omega-3 fatty acids are vital for the body’s normal growth and development because the body cannot manufacture omega-3 fatty acids. Therefore it has to be consumed in foods such as oily fish.

Foods that include Omega 3 include:

  • Flaxseeds
  • Fatty / oily fish – wild salmon, halibut, mackerel, tuna
  • Walnuts

Coq 10

CoQ10 (CoEnzyme Q10) is an antioxidant naturally produced by your body. As it relates to your nerves, CoQ10 plays a role in correction mitochondrial dysfunction, a condition that can lead to a decline in nerve health and cause nerve related problems or pain. Long-term low dose CoQ-10 inhibited neuropathy induced pain, according to a study.

Coq10 can be found in:

  • Fish- Sardines, Mackerel, salmon, tuna, herring
  • Beef, Lamb, Pork- organs like heart, liver, kidneys
  • Eggs
  • Spinach
  • Broccoli
  • Cauliflower
  • Wheat-germ
  • Peanuts, Pistachio, sesame seeds
  • Soyabean oil, Canola oil

Zinc

Dark chocolate for zinc neuropathy HNPP

Don’t go crazy with zinc supplementation because it can cause a secondary copper metabolic problem, however, there are plenty of foods that are naturally high in zinc.

Why do you need zinc for peripheral neuropathy? It turns out that zinc plays a part in modulating the brain and body’s response to stress all along the way. The highest amount of zinc in the body is found in our brains, particularly in a part of our brains called the hippocampus, and it is critical to cell signalling. But you don’t need a huge amount to fulfil your daily quota which can be done quite simply.

Foods that are high in zinc:

  • Oysters
  • Crab and lobster
  • Meat and poultry as well as eggs
  • Legumes – hummus, chickpeas, lentils, edamame, and black beans
  • Vegetables – mushrooms, spinach, broccoli, kale, and garlic
  • Nuts and seeds
  • Whole grains
  • Fortified breakfast cereals
  • Milk and dairy foods
  • Dark chocolate

If there are any more supplements you would like to add, please feel free to comment below! Do these particular products work for you?

Dark chocolate as a medical aid makes me very happy indeed.

UPDATE: Since writing the initial post, a few other supplements including Coq 10 and Omega 3 Oils has been suggested and added above.