Living to a ripe old age with MS

Today is Bedford MS Therapy Centre member,  Maurice, ‘s 88th birthday. ( He’s happy for me to post his picture!) Living proof that you can get to a ripe old age, living a full life, with MS. Maurice is fully mobile with two crutches, and lives independently.

He’s not the only octogenarian patient of mine; last week I saw a lovely lady, always elegant and well groomed, and moving quite fast with one stick, who has passed her 89th birthday. She attributes her wellness to carrying out a daily exercise program she was given by a physiotherapist at diagnosis, over 35 years ago.

We all know that there are many factors, including lots of luck, to how well you keep with MS, but I couldn’t resist asking Maurice what his ‘secret’ was… and it’s a piece of wisdom imparted by his teacher, Mrs Bennet, when he was 10 years old. ” She took us outside,” he said, “into the fresh air, and got us to breathe in really deep, and hold it – and then breathe out, really deep, and hold it. She said do that, at least ten times, every day – and I always have!” He also credits playing football, and gardening.

Very interesting… it’s worth exploring the benefits of deep breathing and oxygenation, and will look into for a future post. In the meantime, Happy birthday, Maurice, and wishing a long and fruitful life to all!

Pain in MS – treatment and managment options

From paracetomol to transcranial magnetic stimulation, everything I know so far about pain in MS.

I’m not going to pretend to know everything about this huge topic, but here is my best shot at present! I started putting the info together for a presentation for MS specialists, with anaesthetist Dr. Sharmila Khot, and then I carried on, to try to compile all I’ve learned into a blogpost. Referenced version available on request.

miranda olding pain lecture

Pain affects around 63% of people with MS. In a 2012 article about the types of pain in MS, the authors state ‘We can think of no other disease that can result in so manyk different types of pain.’

They list 9 types of pain in MS, as:

  • Muscle spasm – (like cramp)
  • Spasticity – (tight / stiff)
  • Musculo-skeletal – (back or joint problems, often from walking difficulties, or sitting)
  • Optic neuritis – (pain in the eye due to inflammation of the optic nerve)
  • Migraine – (in fact, unless linked to beta interferon or fingolimod, MS does not cause migraine, but headaches are more common in people with MS than in the general population)
  • Treatment related pain – (injectable DMTs/ side effects)
  • Neuropathic pain & ongoing extremity pain – (prickling, tingling or shooting stabbing pains, and pins & needles, burning/freezing, often worst in the feet)
  • Trigeminal neuralgia – (agonising bouts of facial pain)
  • L’Hermittes sign – (like an electric shock when bending the head forwards)

I’d like to add to the list, the pain of fatigued muscles.

In  nursing, we have a process, whose acronym is ADPIE.

woman in pink white floral apron smiling while holding a white creme food during daytime

Photo by Pixabay on Pexels.com

It stands for

  • Assess
  • Diagnose
  • Plan
  • Implement
  • Evaluate

This process needs to go on continually, when assessing and treating pain. The first two steps, assessment and diagnosis, are essential to plan and implement the right treatment, and for this, your description of how the pain feels and when it occurs are essential.

The two broadest categories are ‘nociceptive’ (or normal type pain, which is often musculoskeletal), and ‘neuropathic’, (or nerve pain). Many people with MS have a mixture of different types of pain.

pain face

NOCICEPTIVE PAIN

Nociceptive, or normal type pain, is most likely to be described as gnawing, throbbing, aching, cramping, or dull, and in the joints, or muscles.

This includes the pain cause by muscle spasm, stiffness, or spasticity, which needs to be addressed by treating that problem; see mstrust.org.uk/a-z/spasticity-and-spasms 

and Natural options for MS spasms are discussed here

Key interventions are muscle relaxants and physiotherapy.

Musculoskeletal pain is not caused by MS primarily, but it can be a secondary effect of effortful walking, using a stick, sitting for long periods, or becoming deconditioned, and cause, for instance, low back pain, shoulder pain, hip pain. Having high tone or stiffness in the muscles can contribute to this pain, so seeing one of your MS health professionals to work out how much this is contributing, and work out a treatment plan, can be helpful.

For musculoskeletal (MSK) pain, standard medical practice is exercise, physiotherapy, and painkillers.

physio therapy

A physiotherapist can both treat you, and advise on the best form of exercise. A good physiotherapist will also be able to detect specific painful problems that may have specific treatments. For example, Piriformis syndrome can happen to runners, but also to people who have to sit for long periods of time, so can affect wheelchair users. In Piriformis syndrome, the sciatic nerve is pinched by the small piriformis muscle in the buttock, causing horrible pain and discomfort in the buttock when sitting, and specific stretches  are recommended to release it.( Post to follow)

Exercise is a cornerstone in treating musculoskeletal pain, and the most recent findings in pain science suggest that in chronic pain, doing exercise, even when it is painful to do so, can reduce pain in the long term, by reducing ‘fear avoidance’ of movement and further worsening and de-conditioning; by de-sensitising chronic pain areas which have become over sensitised; and also by stimulating the circulation of lymph and oxygen, lowering inflammation. If you have physical barriers to exercise, consider adaptive equipment – electric bikes, power assisted exercise bikes, swimming with disabled access, GP exercise referral, or MS exercise classes.

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Photo by Roman Davayposmotrim on Pexels.com

Painkillers vary in different conditions, but generally follow the World Health Organisation ladder of analgesia.

This ladder was initially put together to help cancer pain, and there is now lot of debate about how useful, or harmful, it really is to use opioids in chronic pain.

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Using Opioids

There are concerns about the prescription of opioids for long term pain, due to the problems of side-effects, tolerance ( the body needing a higher and higher dose to be effective), dependence ( when the body only functions normally with the drug, and trying to cut down or withdraw from it causes unpleasant symptoms)  and risk of addiction. Guidance for healthcare professionals is here: https://www.rcoa.ac.uk/faculty-of-pain-medicine/opioids-aware.

In summary,

  • opioids are most useful for acute pain, and end of life ( cancer type) pain
  • For best results in chronic/persistent pain, they should be low dose, and used only intermittently, to prevent tolerance
  • Above a dose of 120mg a day of morphine, or equlivalent, there is no increased pain relief, but increased risks
  • If pain does not respond to opioids there is no benefit to taking them, and they should be stopped, but all tapering down and withdrawing needs close monitoring and support.

Gels and creams

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Photo by Linda Prebreza on Pexels.com

Anti-inflammatories gels are also available, but remember that the doses count towards your daily allowance of the drug. The evidence for these is good in acute pain, but only minimal in long term pain.

Some people also find that over the counter heat rubs help; these work in a different way, as Counterirritants. Ingredients such as menthol, methylsalicylate (oil of evergreen), and camphor create a burning or cooling sensation that distracts your mind from the pain.

Salicylates. These same ingredients that give aspirin its pain-relieving quality are found in some creams. When absorbed into the skin, they may help with pain, particularly in joints.

There is less robust evidence for the above 2 topical applications.

Capsaicin cream  has good evidence to support its use, and can be prescribed for both joint and neuropathic pain. It’s made from chilli peppers, and burns when it goes on, but if persisted with over weeks, can provide relief by desensitising the nerves, and I’ve occasionally seen it work when other treatments have failed!


Complementary therapies

therapy

As well as standard treatments, many people with MSK pain benefit from complementary therapies, including, but not limited to, Acupuncture, Massage, Reflexology, Craniosacral, Osteopathy, Chiropractic, Bowen technique, Shiatsu and massage. The practice with the most published evidence, showing moderate but sustained benefit in one review of research, is acupuncture.

It’s worth knowing that there is a great deal of difference in the amount of training done by a traditional Chinese acupuncturist, who will have trained for many years, and the acupuncture you might receive as part of standard medical treatment, which may have been a very short course for doctors or physios.

Reflexology and acupressure work on the same principles, and acupressure is a technique you can do  on yourself at home.

point massage

Electrotherapies are also often used successfully, and include many types of device, either as part of physiotherapy treatment or privately bought home use machines, and there are varying degrees of evidence for efficacy of the different types. See Electrotherapies

Also see ‘For all types of persistent pain

NEUROPATHIC PAIN

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Photo by Killian Eon on Pexels.com

 

Neuropathic, or nerve pain is caused by ‘a lesion or disease affecting the somatosensory system.’ It is commonly described as burning, hot, icy cold, tingling, pins and needles, electric shocks, shooting or stabbing.

Neuropathic pain is a difficult pain to manage, especially as it can be worse with exercise, and normal painkillers aren’t effective.

Trigeminal neuralgia is a type of neuropathic pain that is treated differently from others.

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It’s is an agonizing facial pain which come in bouts, but can develop into permanent pain. This requires Carbamazepine as a firstline, but with a specialist, other medications can be tried, and there are both non-invasive and surgical procedures available. See https://www.nhs.uk/conditions/trigeminal-neuralgia/

For the other neuropathic pains,

Firstline medications

that can be prescribed in primary care ( ie by/via your GP) are in the following table. NB. Side effects are only potential side effects. ‘Common’ means between 1 in 10 and 1 in 100 people are affected.

Medication & example brand name

Description, Dose, Side effects 

Only  the most common side effects are listed; before recommendation or prescription, read full list of possible side effects at https://bnf.nice.org.uk/

Gabapentin (Neurontin)

Description: Antiepileptic Dose: Initially 300 mg once daily on day 1, then 300 mg twice daily on day 2, then 300 mg 3 times a day on day 3, alternatively initially 300 mg 3 times a day on day 1, then increased in steps of 300 mg every 2–3 days in 3 divided doses, adjusted according to response; maximum 3.6 g per day.

Common side effects: Anxiety; appetite abnormal; arthralgia; asthenia; behaviour abnormal; confusion; constipation; cough; depression; diarrhoea;     dizziness; drowsiness; dry mouth; dysarthria; dyspnoea; emotional lability; flatulence; gait abnormal; gastrointestinal discomfort; headache; hypertension; increased risk of infection; insomnia; leucopenia; malaise; movement disorders; muscle complaints; nausea; nystagmus; oedema; pain; reflexes abnormal; seizure (in children); sensation abnormal; sexual dysfunction; skin reactions; thinking abnormal; tooth disorder; tremor; vasodilation; vertigo; visual impairment; vomiting

Pregabalin (Lyrica)

Description: Antiepileptic Dose: Initially 150 mg daily in 2–3 divided doses, then increased if necessary to 300 mg daily in 2–3 divided doses, dose to be increased after 3–7 days, then increased if necessary up to 600 mg daily in 2–3 divided doses, dose to be increased after 7 days.

Common side effects: Abdominal distension; appetite abnormal; asthenia; cervical spasm; concentration impaired; confusion; constipation; diarrhoea; dizziness; drowsiness;dry mouth; feeling abnormal; gait abnormal; gastrointestinal disorders; headache; increased risk of infection; joint disorders; memory loss; mood altered; movement disorders; muscle complaints; nausea; oedema; pain; sensation abnormal; sexual dysfunction; sleep disorders; speech impairment; vertigo; vision disorders; vomiting; weight changes

Amitriptyline ( Elavil)

Description: Anticholinergic Dose: Initially 10–25 mg daily, dose to be taken in the evening, then increased, if tolerated, in steps of 10–25 mg every 3–7 days in 1–2 divided doses; usual dose 25–75 mg daily, dose to be taken in the evening, doses above 100 mg should be used with caution (doses above 75 mg should be used with caution in the elderly and in patients with cardiovascular disease); maximum per dose 75 mg.

Common side effects: Anticholinergic syndrome; (agitated (hyperactive) delirium – typically including confusion, restlessness and picking at imaginary objects) drowsiness; QT interval prolongation ( heart rhythm)

Caution in: chronic constipation, urinary retention

Frequency not known includes: visual disorders, confusion, constipation, dizziness, impaired concentration, peripheral neuropathy, urinary retention, altered sensation and depression, all of which can be confused with symptoms of MS; anticholinergics are also associated with dementia in long term use ( over 2 years)

Duloxetine ( Cymbalta)

Description: serotonin and noradrenaline re-uptake inhibitors (SNRI)

Dose: Initially 30 mg once daily, increased if necessary to 60 mg once daily; maximum 120 mg per day.

Common side effects: Anxiety; appetite decreased; constipation; diarrhoea; dizziness; drowsiness; dry mouth; fall; fatigue; flushing; gastrointestinal discomfort; gastrointestinal disorders; headache; muscle complaints; nausea; pain; palpitations; paraesthesia; sexual dysfunction; skin reactions; sleep disorders; sweat changes; tinnitus; tremor; urinary disorders; vision disorders; vomiting; weight changes; yawning

 Capsaicin cream ( Axsain)

Description: plant alkaloids Dose: Apply 3–4 times a day for 8 weeks then review, dose to be applied sparingly, not more often than every 4 hours.

Common side effects: abnormal sensation.

Caution: avoid contact with eyes; avoid hot shower or bath just before or after application (burning sensation enhanced); avoid inhalation of vapours; not to be used under tight bandages

Tramadol (Zydol)

Description: Opioid Dose: For use as short term ‘rescue therapy ‘ only

Initially 50 mg, then, adjusted according to response; Usual maximum 400 mg/24 hours, or use modified release over 12 or 24 hours preparations

Common side effects: Arrhythmias; confusion; constipation; dizziness; drowsiness; dry mouth; euphoric mood; flushing; hallucination; headache; hyperhidrosis; hypotension (with high doses); miosis; nausea (more common on initiation); palpitations; respiratory depression (with high doses); skin reactions; urinary retention; vertigo; visual impairment; vomiting (more common on initiation); withdrawal syndrome

 

Secondline medications

Medication & Example brand name

Description, Dose, Side effects

Only  the most common side effects are listed; before recommendation or prescription, read full list of possible side effects at https://bnf.nice.org.uk/

High strength capsaicin patch (Qutenza)

Description: plant class alkaloids Dose 179mg patch

Common Side effects: sensation abnormal

Cautions: avoid contact with the face, scalp or in proximity to mucous membranes; avoid holding near eyes or mucous membranes; recent cardiovascular events; uncontrolled hypertension

Lidocaine patch (Versatis)

Description: local anaethetic Dose: Apply once daily for up to 12 hours, followed by a 12-hour plaster-free period; discontinue if no response after 4 weeks, to be applied to intact, dry, non-hairy, non-irritated skin, up to 3 plasters may be used to cover large areas; plasters may be cut.

Common side effects in intravenous use – as systemic absorption can follow topical administration, should be borne in mind:

anxiety; arrhythmias; atrioventricular block; cardiac arrest; circulatory collapse; confusion; dizziness; drowsiness; euphoric mood; headache; hypotension (may lead to cardiac arrest); loss of consciousness; methaemoglobinaemia; muscle twitching; myocardial contractility decreased; nausea; neurological effects; nystagmus; pain; psychosis; respiratory disorders; seizure; sensation abnormal; temperature sensation altered; tinnitus; tremor; vision blurred; vomiting

 

Venlafaxine (Effexor)

Description: SNRI Dose: initially 75 mg daily in 2 divided doses, then increased if necessary up to 375 mg daily, dose to be increased if necessary at intervals of at least 2 weeks, faster dose titration may be necessary in some patients; maximum 375 mg per day. Common Side effects: Anxiety; appetite decreased; arrhythmias; asthenia; chills; confusion; constipation; depersonalisation; diarrhoea; dizziness; dry mouth; dyspnoea; headache; hot flush; hypertension; menstrual cycle irregularities; movement disorders; muscle tone increased; mydriasis; nausea; palpitations; paraesthesia; sedation; sexual dysfunction; skin reactions; sleep disorders; sweat changes; taste altered; tinnitus; tremor; urinary disorders; vision disorders; vomiting; weight changes; yawning

Tapentadol (Palexia, Nucynta)

Description: Opioid with SNRI: Dose: Modified release:Initially 50 mg every 12 hours, adjusted according to response; maximum 500 mg per day Side effects: Anxiety; appetite decreased; asthenia; diarrhoea; feeling of body temperature change; gastrointestinal discomfort; muscle spasms; sleep disorders; tremor; for all opioids: Arrhythmias; confusion; constipation; dizziness; drowsiness; dry mouth; euphoric mood; flushing; hallucination; headache; hyperhidrosis;  hypotension (with high doses); miosis; nausea (more common on initiation); palpitations; respiratory depression (with high doses); skin reactions; urinary retention; vertigo; visual impairment; vomiting (more common on initiation); withdrawal syndrome

A non – opioid medication that can sometimes help persistent pain which does not respond to other medications, is Nefopam hydrochloride. Possible side effects include nausea, dizziness, lightheaded, nervousness, confusion, dry mouth, urinary retention.

Other medications that may be offered include stronger opioids, eg morphine, oxycodone, buprenorphine.  See using opioids for more information.

NHS guidelines state that these should only be prescribed in specialist centres, such as a pain clinic or neurology clinic. This is not necessarily because they are stronger, but generally because they are not licensed for the treatment of pain, but for other uses, and have less evidence for use in pain.

Secondline medications for neuropathic pain that can be prescribed via specialist clinic include, but are not limited to:

For pain that does not respond to standard treatment, ask to be referred to a pain clinic. These vary greatly around the country in terms of what they offer, but may offer acupuncture, psychological therapies, electrotherapies as well as medications and injections.

Pain clinics, also offer various types of injections for different pains, the ones most likely to be suitable in MS are

  • Nerve block injections for neuralgias

 

Thirdline interventions

  • Intravenous lidocaine (relief only tended to last for up to 28 days)
  • Intravenous ketamine

The evidence for these two treatments is not robust, and there are only a few centres that offer them, but I have met people for whom it has been the only thing that has helped them.

  • Deep Brain Stimulation. This invasive procedure involves stimulating a precise area of the brain using an electrode to modulate the central processing of pain signals.

This procedure is carried out on the NHS, but as there are serious and well-known risks, it is reserved for the most difficult pain conditions.

  • Spinal cord stimulation (SCS) SCS is an invasive procedure where a small electrical stimulator is placed on the spinal cord, to modify the perception of neuropathic and ischaemic pain.
spinal cord stimulation

picture: Boston Scientific

SCS is also available as a treatment for chronic neuropathic pain, both on the NHS and privately, but as it has a cost of around £10,000 per patient and a life of around 3-4 years, it is usually considered after standard treatments have failed. It works in the same way as a TENS machine, so ‘accommodation’, or the body becoming used to the current and needing a stronger stimulus, can be a problem over time.

Implanting of devices to relieve pain is known as neuromodulation, and techniques are evolving. Newer techniques include Dorsal root ganglion stimulation, dorsal root ganglion paddle stimulation, and high frequency spinal stimulation.

  • Transcranial Magnetic Stimulation (TMS)

TMS

Also known as repetitive, or rTMS, is a new, non-invasive treatment that involves having a magnetic pulse sent to the brain from a plastic-coated magnetic coil held against the head. At present it has only been licensed o the NHS for treatment of depression, but there is also evidence for its use in neuropathic pain. At present it is only available for pain on the NHS as part of research at one centre in the UK; the Walton centre in Liverpool

  • Transcranial direct current stimulation ( tDCS)

TdCStDCS is a non-invasive method of electrical stimulation of the brain using a weak direct current applied to the scalp through electrodes, using a portable, battery operated device. At present it is only available on the NHS for treatment of depression. However, there has been one study in 19 people with MS, which found a 37% decrease in pain over around 4 weeks. tDCS is available privately, and hand held devices are available for purchase. People have been excitedly using privately bought units to make themselves smarter, more alert, or game faster, but there is a possiblity that units could be used for pain control.

 

Safe non-pharmaceutical options for home use

Some people find that cooling strategies give temporary relief, including wearing ‘freezer socks’ ( socks that have been put in the freezer!) cooling garments, and cooling gels

For allodynia, (pain from something that does not normally cause pain, such as shoes, clothing or bedclothes touching the skin) wearing things that provide a continuous stimulus, such as gloves, tight lycra clothing, or lycra splinting /dynamic movement orthoses may help. A bed cradle  can be used to keep duvet/bedclothes off the feet, and sheepskin booties can relieve the weight of  feet rubbing on the mattress.

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dynamic movement orthoses


Electrotherapies are the only non-pharmaceutical options with published evidence of effectiveness in neuropathic MS pain. There is ‘very low quality’ evidence (small studies, lack of comparative data) for use of TENS in neuropathic pain in MS, and this definitely helps some people. A TENS device can be worn for long periods, with the unit clipped to a belt. There is as yet unpublished data on a micro-current electrotherapy, Action Potential Simulation, or APS Therapy. We have had a lot of success with this in the MS Therapy centre where I work, and it is now offered by 11 other MS centres around the UK, or can be used at home.

Although evidence is limited due to the lack of randomised controlled trials, there are many other mind-body therapies that are used by people with MS; the two that have been studied in most detail are acupuncture and mindfulness. See complementary therapies,  and ‘For all types of persistent pain’

Controversial / less safe / possibly pharmaceutical

Cannabis and cannabinoids

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Photo by Michael Fischer on Pexels.com

Cannabis is a naturally occurring drug made from parts of the cannabis plant. It contains many different compounds which are known as cannabinoids, the most widely studies are THC ( the part that makes people ‘high’) and CBD.

 

 

 

In the UK, cannabis is a controlled drug, Class B under the Misuse of Drugs Act 1971,  and currently assigned to Schedule 1, so it cannot be prescribed or held legally with a prescription. Changes to the law are expected, see https://www.mstrust.org.uk/news/views-and-comments/medicinal-cannabis-%E2%80%93-a-potted-guide

In the meantime, many people with MS do find cannabis useful, and use it in various ways, including growing it, making tinctures, vapes, and using it in foodstuffs. There are certain risks to mental and physical health, specifically for those who are younger than 25 years of age, might be pregnant, have cardiovascular disease, respiratory disease, a history of psychosis, or a substance use disorder.

Cannabinoid medication: Sativex is an under the tongue spray, which contains both THC and CBD and has been licensed for spasticity in the UK, but not pain. This information, updated November 2019, is from the MS Trust:

Sativex is a licensed treatment and can be prescribed legally in the UK, but NHS prescribing remains limited and varies across the country.

In England, NICE guidance recommends that, providing the local NHS health authority is willing to pay for continued treatment, a 4-week trial of Sativex can be offered to people with moderate to severe MS-related spasticity which has not improved while taking other treatments. At the end of the trial, if their spasticity-related symptoms have improved by at least 20%, they can continue taking Sativex.

In Wales,  it can be prescribed for moderate to severe spasticity in people with MS who haven’t responded to other anti-spasticity medication.

In Scotland and Northern Ireland, Sativex is currently not considered a cost effective treatment.

Limited access to Sativex on the NHS means that some people decide to obtain a private prescription and pay for the cost of the drug themselves. This can be an expensive option and it’s therefore not feasible for everyone.

 ​It can only be prescribed by a specialist doctor with experience of treating MS spasticity – consultant neurologists, consultant rehabilitation specialists and consultant pain specialists.

Use of Sativex is currently limited to those people who respond to the first four weeks of treatment. If there is no clear improvement in spasticity-related symptoms, treatment is stopped.  

CBD oilCBD oil, which is available from health food stores and online retailers, is made from cannabis but has had the THC removed. In research, only cannabis preparations with a high level of THC have been found to be effective for neuropathic pain in MS in clinical trials. However, people’s anecdotal experience suggests that for some, good quality/high strength CBD oil preparations can be helpful; possibly because for some it relaxes, reducing anxiety and making people feel more distanced from the pain.

There is a thoughtful post about this on the chronic pain blog site, Healthskills, here: 

People sourcing CBD oil should be aware of possible interactions with other drugs.


For all types of persistent pain

Modulating pain

Pain is a sensory and emotional experience, not always related to damage in any physical structure. It occurs in the brain, and not in the part of the body that hurts.

All pain can be ‘modulated’ – turned up or turned down, at different places along the path of the nerve, and emotions have been found to affect how strong the pain feels at different times. Your brain is only able to cope with a certain amount of information at one time, and this includes pain.

pain modulatedFactors that ‘wind up’ or heighten the pain response include ;

˜Hyper-vigilance – focussing on the pain

˜Fear

˜Anxiety

˜Stress

˜Previous negative experience

˜Beliefs about meaning of pain

˜Criticism – being criticised!

˜Boredom

˜Depression

Factors that ‘wind down’ or de-escalate the pain response include:

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○ Relaxation

○ Distraction, enjoyment

○ Meditation/ Mindfulness

○ Meaning

○ Social bonding/ interaction

In chronic / persistent pain, the pain is no longer a warning about damage, and as such does not serve any useful purpose. In many types of persistent pain, the most useful approach is to focus on living a fulfilling life with pain, without giving up on seeking out things that help.

Free Resources

The best free resource that I have found to learn about managing chronic/persistent pain is ‘Retrain Pain’  at https://www.retrainpain.org/

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The Pain Toolkit can also be useful, but it’s more geared towards musculoskeletal pain:

These blogs contain a lot of insight about living with persistent pain; the first aimed at people with pain

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and the second for healthcare professionals

It may also possible to be referred to locally taught pain management / supportive courses such as:

  • Self management programmes (SMPs)
  • NHS pain management programmes (PMPs)

And for exercise, ‘Exercise on referral/prescription’ courses at a local gym.

You can also access online NHS exercise studio videos at https://www.nhs.uk/conditions/nhs-fitness-studio/

Privately bought pain management resources include

  • Book and CD set: Mindfulness for Health: A practical guide to relieving pain, reducing stress and restoring wellbeing, by Danny Penman
  • The ‘Headspace’ app pain management pack is introduced here:

https://www.headspace.com/blog/2017/03/31/headspace-for-pain-management/

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and the day 1 meditation is here:  https://my.headspace.com/packs/36

  • I have always found HeartMath biofeedback to be the most effective system for creating resilience to stress, and use in in my MS clinic, where I did a small piece of research some years ago. There are also some published studies showing reduction in chronic pain when using this system. This is a simple technique that can be taught using biofeedback software by a licensed trainer, or used with a privately bought app and biofeedback sensor.

heartmath wavesheartmath inner balance

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I hope that by reading through this you will find something that helps on your journey with pain.

-Please let me know about anything that you think I’ve missed out; or mistakes – the topic is so vast! Also your experiences with things that do help you, so that I can continue to increase my knowledge and understanding, and pass on useful information to the people that I see, both in my MS Nursing clinic, and in my business life with Action Potential Simulation therapy.

Thanks, and

All the very best!

Miranda

APS Therapy and MS pain

As an MS specialist nurse, I have always been aware of how much pain can be a problem in MS.  The big one is ‘neuropathic’, or unpleasant burning, tingling or shooting pains that are the result of inflammation, or scarring in the nervous system. ‘Normal’, or ‘nociceptive’ type pain in MS can typically include cramping muscle spasm, pain in stiff or very tired muscles, or the sorts of back or joint pains that can be caused by by being less mobile, or putting a strain on certain joints. Because the medications used, especially for neuropathic pain, can cause very problematic side-effects, including increased fatigue, weight gain, cognitive impairment, co-ordination problems and mood problems, I have always been on the lookout for new, natural, or left-field treatments.

I heard about APS Therapy when my friend, and lead for the NHS pain management team in Hull, called to say that I might be interested in a training they were having.

They had heard about some work being done in a hospice outpatient setting, by a palliative care consultant, ( Dr. Lia Van der Plaat, second from the right) which had managed to alleviate pain in some people, including some people with MS, with otherwise intractable pain.

This led to the team applying for and winning a commissioning prize to run a pilot study in people with MS, and people with rheumatoid arthritis.

header-grunenthal-aps-980x360-980x360

 

And now Maurice ( on the left) was coming to the UK to teach the team how to use their new machines. Did I want to attend? Of course I did!

 

Having had our training from Maurice, I was all fired up to get going; Dr Lia kindly agreed to present her findings to my team at the Beds and Northants MS Therapy centre, my boss proactively responded and got funding for our first APS Therapy machine, and off we went with our first users! We meticulously kept data on pain levels before and after a course of treatment, and quite soon the clinic was very popular, running at full capacity and needing  second machine.

It actually took a year before the Hull team were able to start their study, and by this time, we were able to share a lot of information in order to help them design their study. We had noticed that APS Therapy users often reported other benefits as well as pain relief, most commonly, improvements to energy, sleep and wellbeing, and recommended that they also keep outcomes for these.

Our clinic has now been running for  5 years, now using 4 APS Therapy clinic machines, and one home-use rental machine, and is very busy every weekday, with lots of really happy stories of improved pain and symptoms, and less use of medication.

 

 

Given that the APS has:
  • reduced my fatigue
  • Allowed me to reduce my intake of pregabalin
  • allowed me to come off the voltarol altogether,

I think it is a no-brainer that I should continue!    – Meryl Lovatt, Northamptonshire.

 

What is an APS Therapy machine?

mk4apparaat

APS stands for action potential simulation. An APS Therapy machine sends a copies of the action potential, or nerve signal, through the body, in between two sets of electrodes on the skin.

What are action potentials?

Action potentials are the tiny waves of electricity that pass down nerves and other cells, conducting the nerve signal and stimulating cellular functions.  Action potential simulation therapy machines send a copy of this wave, or ‘wave form’ , and also stimulate the body’s own action potentials, between electrodes on to the skin. This results in better communication between cells, improved removal of the waste products of inflammation, and increased production of the hormone melatonin, pain releiving neuro-transmitter leukine encephalin and the energy carrying molecule, adensoine triphosphate, or ATP.

 

What are the benefits?

The results to the user can include:

  • reduction in, or sometimes complete relief of pain,
  • enhanced energy/reduced fatigue,
  • enhanced recovery from injury,
  • faster recovery from exercise, and in many cases,
  • improvement to sleep quality and quantity.

 

 

 

So what were the results with our patients?

In Bedford, we have been running our clinic now for over 5 years, but at the 2 year point, we compiled and analysed the outcome measurements, and were able to show a statistically significant reduction in pain in our users, in a paper and also clinical posters, which were exhibited at a number of international MS conferences in 2016.

Poster Action Potential Simulation Therapy for pain in people with MS, report on a two year pilot study (3) (1) (1)

 

 

In the first 2 years we treated 60 people with a 6 week course of APS Therapy 2-3 x a week, for pain.

(We planned for 3 x a week, but in reality this was often 2) We found that 78% of those people had a reduction in pain; 23% to pain free.

The average reduction in pain was 3.22 for ‘usual’ pain, and 4.78 for ‘worst’ pain on the

10 point ‘Visual Analogue Scale’  (VAS)

In practice, there was a great variety, from no change, to dramatic drops from high pain levels to pain free, as you can see on the following charts. This is joint pain and injury at ‘usual level’ ( dark is before a course of treatment, light is after)

Joint pain and injury treated with APS Therapy

And here at ‘worst level’

Joint pain and injury, worst, treated with APS Therapy

Our biggest group was ‘neuropathic pain in feet and legs’:

Average VAS (0-10 scale) pre: 6.06                 Average post: 2.65

 

And here is the same pain at ‘worst’ levels:

 

Average VAS Pre: 8.3                                                 Post: 3.6

 

The other pain groups were ‘other neuropathic pain’, ‘joint pain or injury’, ‘back pain’ , ‘headaches’ and ‘other nociceptive pains’; all of these groups had an overall reduction in pain; the greatest was for ‘joint pain and injury’.

We found that whilst joint pain, musculoskeletal pain and injury sometimes needed only a short course of treatment to be resolved, neuropathic pain in MS is very often helped, but if it is long term, is likely to need maintenance after the first 6 weeks, of once a week treatment, which for most people, is enough.

In general, people were extremely happy with the treatment. 33 of these first 60 people reduced or discontinued medication as a direct result, which also added to their wellbeing.

We haven’t stopped keeping data, just haven’t stopped recently to collate it! One of the most enjoyable things about being involved in running an APS Therapy clinic at work, is hearing about people with MS  reporting not just pain relief, but many other benefits, and the positive impact this has had on their quality of life.

We’ve had reports of reduction in spasms, elevation in mood, improvement to sleep quality, cessation of recurrent UTIs when on 3 x week, disappearance of fatty/benign lumps, improvements to constipation, hormonal balance, and have just had some really big breakthroughs with trigeminal neuralgia.

The most common of the ‘other benefits’ have been energy improvement/fatigue reduction, and because of this, our clinic is now open for people who want to try APS for these reasons, or to help after relapse, when recovery seems to have hit a plateau.

APS Therapy is not a cure for, nor does it have an effect on the course of MS, however, it is a very exciting treatment for some of the invisible, but also potentially disabling symptoms of the condition, especially as there is no risk, and is generally free of side-effects.

We are lucky to have had a wonderful team of volunteers in our APS Therapy clinic, led by our clinic manager, Heather, to teach and assist people, and in my private business I hire, sell and allow people to trial APS Therapy, teaching them how to use it over Skype, Facetime or Whatsapp videocalling.

Action Potential Simulation could be thought of as a ‘natural pain treatment’. It’s not just for people with MS, but it makes sense that people with MS respond particularly well to it, as the problems in MS are due to the inability of the body to conduct its action potentials down damaged nerves.

At www.painfreepotential.co.uk there are lots of words from people with MS, who have successfully used an APS Therapy machine to reduce pain, reduce spasms, come off medication in order to start families, boost themselves back after relapse and improve energy levels.

As well as MS, I also Suffer with Anklosing Spondylitis which gives me quite a lot of back pain. The MS itself was making me feel exceptionally tired & I was struggling with bad head aches & a recurring sinus issue.

A treatment plan was put together for me & within 2 weeks of starting the treatment I was no longer waking up every morning with bad headaches. My energy levels were greatly improved & my backache was reduced.

… using this machine in addition to leading a healthy lifestyle has helped me to stay active & continue to enjoy an active lifestyle. – Kat Miller, Bedfordshire.

 

A recent one that made me smile was from Nina Pearce, from Chelmsford, who said:

Alongside my role as clinical nurse specialist in MS,  I have now also taken on the training and distributorship for APS Therapy in the UK, calling my company ‘Painfree Potential’.  In this way I’ve been able to train 11 other MS Therapy centres around the country, who now also offer APS Therapy:  Leicestershire, Berkshire, Hertfordshire, Kent, Hampshire, Cardigan, Exeter, Manchester, Sutton and Croydon, Suffolk and the MS-UK Wellness centre in Colchester.

centres that use APS Therapy

 

It’s my aim to attract researchers to conduct large scale clinical research so that we can explore the possibilities of APS Therapy and make it more widely known about; in the meantime, this year, with supervision from the University of Bedfordshire, as part of an MSc by research, I aim to carry out a clinical trial on the effects of APS Therapy in people with MS, with MS Nurse colleagues in the NHS.

 

 

You can learn more about APS Therapy at http://www.painfreepotential.co.uk
email miranda@painfreepotential.co.uk,
or call 01908 799870 and I will endeavour to call you back within a few days.

 

 

 

 

 

MS bowel problems and what to do about them!

Now I have your attention with this picture of Fake poo – Bowels! Trouble with the bowel can be the bane of your life, so here we’re going to have a look at what can go wrong and what you can do to prevent or rectify things!

For the bowel to work perfectly, there must be intact nerve pathways from the inner and outer anal sphincters, all the way up the spinal cord, and down again. Any interruption to these messages can cause problems.

picture from Aliexpress.com

Let’s start with constipation. As well as changes to the nervous system, reduced ability to exercise, difficulty getting into a good position, reducing fluid intake because of urinary urgency, and medication, can all contribute to this problem.

Of course we always start by looking at diet and fluids, adding plant-based fibre, fruit, vegetables, pulses and seeds. Some old school wisdom that can be very effective include: 1 ripe pear daily, figs, prunes, and adding linseeds to cereal or porridge. Cold pressed flax-seed oil can have a 2 fold role as it’s the highest source of omega 3s, strongly anti-inflammatory, and for some, has a loosening effect.

 

 

 

 

 

However, in MS, sometimes, you can be doing everything just perfectly re diet and fluids, and still have a serious problem with constipation.  If you need to use laxatives, it’s important to understand how they work. The longer the stool stays in the bowel, the more your body draws water out, causing a hard, dry stool.

There are four types of laxative; bulk-forming, osmotic, stimulant, and stool softening. If you have enough dietary fibre, bulk-forming shouldn’t be necessary, and we hope to prevent the hard dry stools that stool-softeners treat.

In my experience, an osmotic, ‘macrogol ‘ product, like Movicol or Laxido, which contains indigestible plastic molecules to stop your body from absorbing water from the stool, is often helpful, but do find the daily dose that works, rather than first getting constipated and then taking it, as this can cause the opposite problem.

Senna or Bisacodyl are stimulant laxatives, increasing the luscular action of the bowel, and can also be used to add ‘oomph’, but if taken on their own, may just give you cramps. Try taking them at night, with the aim to catch the time that the bowel is most active naturally; after the first hot drink in the morning…

Some people find suppositories helpful; these can be glycerin, a simple oily substance that can loosen dry stool, or bisacodyl, to stimulate the bowel.

Constipation that has not responded to these measures may be treated with mini-enemas, (eg Fleet) which can reach a little higher.

 

Did you know that the natural position for humans to poop is in squatting? There’s a brilliant demonstration in this video, https://youtu.be/YbYWhdLO43Q advertising the ‘Squatty Potty’, a peice of bathroom furniture that helps get you more in that sort of position. Of course you can make your own position support system, and there is more than position at play in bowel problems in MS; however, it’s a good start.

For intractable constipation, one of the irrigation systems, discussed below, may help.

 

 

 

Bowel urgency and accidents

Sometimes, the nerve damage in MS can mean that it’s not possible to ‘hold on’, and for some people, constipation alternates with bowel urgency or incontinence. Sometimes, just solving constipation and getting into a routine can be enough to prevent accidents, but sometimes it’s not enough. Nothing can be more upsetting than having a bowel accident, but luckily, there are now very effective products available on prescription, which can help to prevent this happening.

For occasional looseness, Loperamide ( Immodium) can be used, either in tablet or liquid form. However, it’s not advisable for long term, especially if you also get constipation.

For longer term problems, trans-anal irrigation systems provide some people with MS with a life-changing solution. These are basically kits for pumping some body-temperature tap water into your lower bowel, using a soft, disposable rectal catheter or cone, whilst you sit on the toilet.

 

Once you remove the catheter or cone, the water is also released, and any stool that was sitting in the descending colon, is washed out. The action of the water can also stimulate a bowel movement within the next 10-15 minutes.

Once you’ve used the irrigation system, you know that the descending colon is clear, and that it would be very unlikely to need to go for the next 8 hours, unless you have a problem with diarrhoea or loose stools.

Peristeen:  https://www.coloplast.co.uk/peristeen-anal-irrigation-system-en-gb.aspx

Qufora: http://www.macgregorhealthcare.com/index.html

For people who would find hand-pumping impossible, there are motorised systems, including the ‘Navina’ by Wellspect, and the Irypump by B-Braun.

Speak to your continence nurse or MS Nurse to discuss your problems and be referred.

Qufora also has a bed system, that can be used for people who can’t sit on a toilet,

and a mini pump, which is very handy for people who just cannot get started, or can’t seem to finish off properly.

Posterior tibial nerve stimulation (PTNS)

PTNS is a drug-free electrical treatment for both bowel and bladder urgency and incontinence, which involves having several weeks of weekly, tapering down to less frequent, sessions, sitting with a tiny, ( hairs breadth ) needle attached to an electrical current, inserted at the back of your ankle.  From here the current travels to the sacral nerve plexus. It has about an 80% success rate. I recently had the chance to experience this and me and my colleague Emma, got to stick needles in each other, as Alison from Cogentix ‘Urgent-pc’ came to demonstrate. It didn’t hurt… very much at all! – and many people, ( including Emma)  don’t even feel it! It’s not currently available in our area on the NHS at present, although Bedford, Luton and Northmampton hospitals all have business plans to introduce it. It is available in some NHS hospitals, and also in many private clinics, and I have previously had someone referred for it for bowel incontinence, who did very well.

See http://www.cogentixmedical.com/patients/products/urgent-pc

 

 

 

 

 

 

 

 

Bowel accidents due to loose stools, is a different type of problem. Medical problems need to be excluded by seeing your GP, and you may also need to explore whether items in your diet are upsetting your digestion. The sugar Lactose in milk is a common suspect, and some people have a problem with almost all the simple sugars in foods, and have to follow a very strict diet which eliminates ‘FODMAP’s; see:

https://www.nhs.uk/Conditions/Irritable-bowel-syndrome/Pages/Treatment.aspx,

If absolutely nothing else works, and you are still being plagued with problems, then there are surgical options, including elective colostomy.

There are now so many options to help with bowel problems in MS , so ask for help,  and if you’re not getting anywhere, ask to be referred to a specialist bowel clinic.

 

 

 

 

Urine infections in MS – an integrated approach to prevention & treatment.

I always discuss the need to stay one step ahead of the bladder in MS with my patients, as having a urinary tract infection (UTI) can mimic a relapse and cause real setbacks.

Explain this to your GP, request they prescribe antibiotics at the first sign of infection, and that NICE guidelines recommend a longer (5–10-day) course for these ‘neurogenic’ UTIs.  It’s also worth taking at least a prescription away with you on holiday to prevent losing days trying to see a doctor.

Check! Whenever you experience new or worse symptoms of MS, always check for a silent UTI. Aswell as  visiting your surgery or MS nurse, you can also buy urinalysis dipsticks for home use. A change of colour to Leukocytes or Nitrites may indicate infection, which should be treated.

dipsticks

If you take antibiotics, top up with probiotics (good bacteria), during and afterwards, to prevent digestive problems and thrush, and boost your health and resistance to future UTIs. Lactose-free capsules or powder are better than sweet probiotic drinks. In fact looking after the good bacteria in your gut is a huge and important topic for all of us, and particularly if you have an auto-immune condition, and there’s lots of ways you can do this.

bacteria (1)

Also drink plenty of water, pee frequently, and cut out sugar to help your immune system fight back.

Causes.

One cause of UTIs with MS is the bladder not emptying fully, because the muscles involved are not working together properly. Struggling to start passing urine, feeling there’s some left, urgency, and UTIs can all be signs of incomplete emptying. This needs to be identified by ultrasound scan, generally with the continence service.

bladder ultrasound

Try peeing twice every time, but if a residual (left over) volume of 100mls or more is found, you may need to learn how to use intermittent self-catheterisation with small, lubricated, disposable catheters, to empty fully.

ISC can be liberating, but also potentially cause infection; technique and catheter type are important, so stay in touch with your advisor.

ISC

Prevention and natural treatments

If you seem to keep getting urine infections one after the other, it’s quite likely that you are just not completely throwing off one infection.

It’s a very dispiriting situation, However –  there are lots of things you can do to shake off and help prevent recurrent UTIs.

The most common bacteria causing UTIs is E coli, which can cause recurrent UTIs, as it can burrow into the bladder wall, and release spores after antibiotics are finished. However, it’s important that your urine goes to the lab, as rarer bugs are also possible, including from candida, which we’re not covering here today. GPs are recommended not to prescribe low dose daily antibiotics, but they sometimes help as a last resort.

e-coli bacteria

Sometimes antibiotic treatment no longer seems to work, or some people prefer to try herbal remedies with antibiotic properties. Stopping the bacteria from sticking to the bladder wall and flushing it out when it does is the aim of these natural agents. There are many, with varying degrees of research to back them, but the ones that I have seen most success with are: (Nb I don’t get any benefit from these companies!)

For prevention:

  • Concentrated cranberry tablets,  eg Cysticlean

http://www.cysticlean.co.uk/main/index.phpcysticlean 2

For prevention ( low dose) and/or treatment ( full dose)

  • D-Mannose; a simple sugar that e-coli latches on to and can be flushed out on, and is now being tried by consultants at the national hospital for neurology and neurosurgery.  https://www.waterfall-d-mannose.com/dmannose-options.html

d-mannose

  • SOS advance; a colloidal solution of antibiotic herbs that can be used preventatively or at times of infection.

http://www.sosessentials.com/s/

sos-advance

For recurrent UTIs with an indwelling catheter

If after a catheter changes, with symptoms, ask District Nurses to test from the port after 48 hours, and have an antibiotic at the ready; test again 48 hours after completion.

The ‘Bardex IC’ ( infection control) silver tipped catheter has been shown to reduce UTIs, (reports infections 3.7 x more common in those catheterised with a normal catheter vs a sliver tipped one) as it prevents a biofilm forming. It becomes effective after around 3 months ( and has to be changed regularly like all indwelling catheters), so don’t give up too soon.

Uro.13.BardexIC2way.0165SI (1)

If all else fails, ask for a referral to urology, to check for bladder stones, and possibly for bladder washout, and to discuss possible treatments.

See a doctor if you have a fever, chills, pain in the flank area, nausea or vomiting, and always check any natural/herbal remedies are safe to take with your condition and medications.

UPDATE: – I thought this comment from Jenny was important enough to update the blog with:

“I thought I’d let you know about some other treatments for UTIs that are being tried on me that no-one seems to know about (not even doctors in Oxford, nor the MS specialist nurses – I’m keeping them posted too)..

So one is Uromune, supposedly a vaccination against four strains of UTI including e-coli. It’s inactivated bacteria taken in pineapple juice under the tongue once a day for 3 or 6 months. They’re doing a trial in Reading and there are details here http://www.readingurologypartnership.com/uti-vaccine/4594063839 – you can’t get on the trial if you self-catheterise but can pay privately for it (not cheap – including seeing the consultant it was about £600 for me).

And the other is iAluRil, a GAG layer replacement, which you stick inside directly with a catheter, to replenish the non-stick lining of the bladder, and keep in for as long as poss (I do it at night and sleep with it in – it’s only 50mls). There are apparently two places in the UK which don’t do this and Oxford is one, so I go to the Royal Berks for that, on the NHS. Info here http://ialuril.co.uk/

Apologies if you knew all this and that just took up time that you’ll never get back! But I thought, if you don’t know about it, you’re the sort of person who will be interested and use the info to help people. (btw I have no financial links to any of the organisations – am just a person with MS and RUTIs who’s trying everything!). And also I should let you know that I’ve been on the Uromune for nearly 3 months now and just had an e-coli infection… hey ho.”

–Dear Jenny – this is fab; I’m going to post it up as an update so everyone can see, thankyou. I do have a patient who was on the immunisation trial but unfortunately it did not work for her. The aAlUril I have never heard of and am going to look into. Thanks again for your most useful comments!
all the best, Miranda

 

 

Trials you can take part in: Statins in progressive MS, and Biotin in progressive MS

biotin 2

There’s a lot to think about if you’re considering being part of a clinical trial.

Some trials are more risky than others. These two are probably less risky, but you still need to ask:

What are the potential risks?

How many people/ what percentage have these risks

What are the potential side-effects?

How many people /what percentage get these?

What can be done if I do have a side effect or risk? Is it reversible?

What are the potential benefits?

What percentage have had these benefits?

How much of these had similar condition at a similar stage to me?

How long do they last?

Is more treatment necessary?

How much does it cost?

Will you give information either to me or to my doctor about what therapy I have undergone?

How will I be monitored? Eg scans, bloodtests etc

How often will I have to return for follow up? Is there a charge?

Will they pay my travel expenses?

How will I know if it’s worked? What’s the timescale for improvement?

Is there a placebo ( dummy drug) group? If I’m in the placebo group, and the real treatment group benefit, will I have the chance to change to the treatment group?

If I have the treatment during the trial, and benefit from it, will I be able to carry on with it long term?

Biotin

I’ve posted before about biotin in MS. A medical preparation of it has been given the name MD1003, and it is now being trialled to see its effect on people with progressive MS.  If you’re interested, here are the contacts. Don’t forget to ask those questions!

Trial Location(s)
Southern General Hospital
Glasgow
Scotland
G51 4TF
Musculoskeletal Department; Freeman Hospital
Newcastle upon Tyne
NE7 7DN
Clinical Trials Unit; Main Hospital; Salford Rooyal NHS Foundation Trust
Salford
M6 8HD
Barts and The London Hospital
London
E1 2AT
University College of London, Institute of Neurology
London
WC1N 3BG
Edinburgh
EH16 4SB
Trial Contact(s)
Primary Trial Contact
abdelkarim Bendarraz

Statins

statins

UPDATE November 2018:

  1. Researcher believe that benefits are NOT all just about the lower cholesterol in the blood, but that there are other effects on the cells and the immune system
  2. The next phase of Statins research is recruiting, and to get involved, visit http://www.ms-stat2.info

It may be that this becomes the treatment for progressive MS of the future.

 

 

I’ve also posted a long time ago about statins.

My personal suspicion is that the beneficial effects are from lowering the bad fats in the blood, and that a safer and more healthy way to do this would be to adjust lifestyle factors; primarily diet, along the lines of the advice at http://www.overcomingms.org…. However, there may be some other mode of action, or radical lifestyle change may not be possible for you, in which case, you can register your interest for the trials, so that somebody will contact you when they start recruiting, which should be very soon ( summer of 2017), here:

https://www.mssociety.org.uk/forms/ms-stat2-information

Its’ been a long gap –  hope to post again much sooner this time,

all the best

Miranda

 

Lipoic acid for MS

Hi! Hoping all had a merry Christmas and will have a wonderful New Year, full of everything good, and the strength to do everything possible for vibrant and glowing health and happiness. !

Been asked by lots of people to elaborate on the short report about an easy to get hold of supplement, Lipoic acid, in MS, that was part of this blog post; most importantly, where to get supplies of the dose that was used in the study ( 1,200mg daily).

antioxidant

“Lipoic acid for neuroprotection in secondary progressive multiple sclerosis: results of a randomised placebo-controlled pilot trial,1” was reported on by Dr. Rebecca Spain, MD, MSPH, a neurologist in the Oregon Health & Science University Multiple Sclerosis Center, also working with the VA Portland Health Care System, at ECTRIMS 2016.

Pic source:   http://www.desimd.com

Patients in the study had secondary progressive MS, were, on average, 58.5 years old, and had an average Expanded Disability Status Scale (EDSS) score of 6. ( walking with 1 stick)

The trial was randomised; around half (27) took 1,200 mg of lipoic acid, around half (24) took a placebo for 96 weeks, and neither the patients nor the clinicians knew who was taking which. They measured brain atrophy ( shrinkage), which is a way of showing loss of neurones in the central nervous system, and also neurodegeneration in the spinal cord and eye,  neurological functions, cognition, walking, fatigue, and quality of life.

Five participants in the lipoic acid group, equaling 9.8 percent, quit the study early, but the remaining patients took about 80 percent of their daily lipoic acid doses.

Researchers found that the annualized rate of whole brain tissue loss was significantly lower in patients receiving lipoic acid. After two years, treated patients had lost about 0.4 percent of their total brain volume, while those in the control group lost 1.3 percent during the same time; brain atrophy was reduced by 66%, almost to within normal limits. Those receiving lipoic acid were also found to walk faster, and had half the number of falls.

The treatment did not increase the occurrence of adverse events, but researchers noted that lipoic acid was linked to more stomach problems.

The author, Rebecca Spain when interviewed by Multiple Sclerosis News Today, said,

“The slowing of whole brain atrophy was remarkable. We can use this pilot study as the basis for designing a multisite clinical trial, which will help us answer questions about how lipoic acid works and whether it can indeed improve clinical outcomes for people,”

So; what is the mode of action of Lipoic acid?

Why might it be working so well in MS, and where can you get hold of higher doses?

Lipoic acid is an anti-oxidant, meaning that it helps to protect cells, including those in the brain, against damage from ‘oxidants’, or ‘free radicals’ which are unstable, oxygen-containing molecules, that damage other cells to protect themselves. Free radicals are both produced in the body as a result of metabolism, energy creation and, importantly, inflammation, and also come from environmental factors, such as air pollution, radiation, UV light and cigarette smoke. Anti-oxidants can help to fend off viruses and microbes, but an imbalance, with too many anti-oxidants, has been linked to the development of more than 50 diseases, the most commonly discussed being heart disease and cancer.

eat-a-rainbow

In food, antioxidants are present in various degrees in all plant-based food; a 2010 study analysing the anti-oxidant content of over 31,000 foodstuffs begins  ‘A plant-based diet protects against chronic oxidative stress-related diseases’

and goes on to report a                                                                                  ‘several thousand-fold differences in antioxidant content of foods. Spices, herbs and supplements include the most antioxidant rich products in our study, some exceptionally high. Berries, fruits, nuts, chocolate, vegetables and products thereof constitute common foods and beverages with high antioxidant values. 
spices

So daily diet, as always, is super important, and nothing can replicate the benefits of eating the nutrients from real, fresh food; in this case, berries, fruits, vegetables, herbs and spices. The range is as important as the quantity, so ‘Eat the Rainbow’

But if you want to replicate this study, where participants took 1,200mg of supplemental lipoic acid, you need to find a high dose ( and probably, reasonably priced) supplement. If money is no object, then it’s a good idea to spend more and buy from a reputable, high-end source. If, like me, you need to keep an eye on the pennies, then I’ve done a scout round for cheap, high dose, vegetarian.

I don’t have any vested interest in any supplement companies, and am not qualified to judge their products or to recommend supplements; you always need to take your own responsibility for your choices, based on your condition. However, lipoic acid seems to be a safe supplement.

A scout around the internet produced a few brands that make 600mg tablets, which would give a dose of 1,200mg with 2 tablets daily. I always go for a vegetarian friendly option, and came up with these via Amazon.co.uk

‘Doctor’s Best’ from i-herb, at £8.11 for 60 veggie capsules

and

‘Natrol’ timed release, via amazon, at £9.95 for 60 timed release veggie capsules

I am going to be protecting my brain, I hope you’ll protect yours!

Hope this helps!

all the best,

Miranda
 

 

 

 

 

Latest MS research – what I learned at ECTRIMS, part 2

xcel

Wow, what a full on 3 days for the brain! So inspiring to see a sea of research posters, a vast menu of presentations , and 8000 engaged delegates filling up on the latest research.

Bone marrow transplantation ( HSCT/stem cell) – is it a viable treatment for active relapsing remitting MS – debateimg_3970

Consensus was: safety is improving – from 2011 the mortality rate has been 0.3% rather than 1-2%. Due to impressive rates of NEDA ( no evidence of disease activity – relapses or on MRI) – 80% at 2 years and 70% at 4 years in one study;

Yes, but ONLY in cases of early/new, highly active/aggressive relapsing remitting MS, where person is young, still walking, and treatment with first & second line treatment have failed.

And now for something completely different, and please DO try this at home(!): Seriously, I will be

Lipoic acid for neuroprotection in secondary progressive multiple sclerosis: results of a randomised placebo-controlled pilot trial –  R.I. Spain (Portland, United States) lipoic-acid

This beautifully carried out RCT had people with progressive forms of MS taking 1,200mg of Lipoic Acid, a supplement often sold as an ‘anti-oxidant’, and also called ‘alpha-lipoic acid’ once a day. A control group took a placebo.

After 2 years, the group taking the lipoic acid had a whopping 66% less brain atrophy on MRI scan ( showing less loss of brain cells), taking them back to a normal rate of brain atrophy, and half the number of falls.

Love it when something so harmless is investigated properly and found effective. Especially good to have something positive for progressive MS!

Comparison of Beta Interferons, Fingolimon, Alemtuzemab (Lemtrada) and Natalizumab ( Tysabri)

showed that as we know, effectiveness in reducing relapses from lowest up goes: Interferons, then Fingolimod, then Alemtuzemab and Tysabri. The last 2 showed the same effectiveness in preventing relapses. Natalizumab also showed improvement in disability in the first year, but not after that. and as we now the side effect profile and the way you take it is very different. Tysabri also has a rebound effect if and when you stop taking it. 

Alemtuzemab

research was presented that showed this drug performing very well in ‘resetting’ the immune system. Around 60% of people did not need more than 2 infusions, and NEDA ( no evidence of disease activity) was very high., but only when used EARLY. Time to change from the ‘wait and see’ attitude? This is the push from leading MS experts. Maybe check in with the MS Brain Health campaign if your neurologist is dragging their feet.

Vitamin D vit D.jpg

very strong evidence coming through from numerous sources that notwithstanding previous medical controversies and uncertainties, all people with MS should be on high dose from diagnosis – 4-5000 IU daily at least, and testing ( backs up info already posted on this blog) MS Base ( a database with over 41,000 people with MS’s records) showed a clear seasonal peak in relapses around the world, at the end of winter; with a time lag, shorter in colder countries. Low vitamin D levels were the strongest risk for progression in another study, and added a further anti inflammatory effect to people already on a disease modifying treatment, in another.

One study found that  people with MS given 100,000 twice a month for 2 years had a 60% reduction in relapse rate, and a 78% reduction in new lesions, compared to placebo. Powerful stuff, hopefully enough to finally swing the doubters.

Siponimod for progressive MS

presented as promising new treatment but I missed that session so – investigate!

Scientific highlights presentation – was split into 3 sections ‘migration and CNS injury’, ‘Gut and Food’ and ‘remyelination and oligodendracytes’

At the end of the event, I was really surprised to see these slides in the highlights – I missed the full presentation but one slide went like this:

hb02Oxygen

MS from an energy perspective.

Q:Why are animals with experimental animal MS paralysed?

A: Axonal ( nerve) depolarisation ( can’t send messages)

Q Why are axons depolarised?

A: Hypoxia ( lack of oxygen)

Q: Why is the inflamed central nervous system hypoxic?

A: Reduced blood flow

Q Why is blood flow reduced?

A: Currently unclear , CNS specific ( ie we don’t know, but it’s just the central nervous system.)

Went on to describe how animals with this experimental model of MS respond very well to hyperbaric oxygen: Oxygen therapy reduces pattern 3 demyelination.

So maybe we will see some new research showing usefulness of hyperbaric oxygen? If you can access it, I always say that it’s worth trying, and observe the effects on yourself.

Diet and Gut in MS

Feels like finally, the importance of aspects of diet is being addressed and listened to in MS research. In fact all present were enjoined Not to ignore environmental factors. Hurrah! a strike for logical thinking!

This was a feature of quite a lot of research at ECTRIMS. Lots of research on the role of the Biome ( bacteria in the gut) and how it affects MS. Interesting, exciting, but we still haven’t nailed practical application yet, so best bet is Take a daily probiotic capsule or powder, with as many different strains in as possible. And do these things, discussed previously.

Being overweight was identified as a serious risk factor for both developing, and worsening with MS. If you’ve got pounds to lose, check out the excellent ‘Fast Diet/ 5:2 diet’, showcased by Micheal Moseley on the BBC -https://thefastdiet.co.uk/ fasting also has benefits for inflammatory conditions.

Salt:  

salt stored in the skin was posed as a driver for auto-immune neuroinflammation in one paper. People with MS were found to have higher levels of salt in the skin….so that too… we could all cut down our salt – most is found in processed foods… and as you do it, your tastebuds acclimatise so it won’t mean you won’t taste your food.

Ending on a high

Conference ended on a high note, celebrating the huge progress that has been made in preventing disability – progress that started even before the availability of the disease modifying drugs, but has in recent years added a further 15 years of non-disabled life to the average MS-er, and is still making leaps and bounds.

I hope I’ve made an accurate summary of the sessions that I attended – mistakes are possible, and they will be all  mine. If you spot one, please let me know!

That’s all for now, til the next time!

miranda

 

 

 

 

What I learned at ECTRIMS: part 1

Hellectrims-webo from the 32nd congress of ECTRIMS, & the 21st conference of Rehabilitation in MS.

 

 

ECTRIMS is ‘ Europe’s and the world’s largest professional organisation dedicated to the understanding and treatment of multiple scelrosis’

With over 8000 delegates, all specialising, of with a special interest, in MS, it’s a privilege to attend! Loads of lectures run concurrently, so you can never attend everything. And the really science-y lectures, that are not yet going to make a practical difference to my patients, tend to go over my head a bit. Or a lot, depending! So here’s a digest of what I’ve learned so far, that has a practical application for people with MS!

The intro – X. Montalban (Spain)ectrims

Good to hear the current aims:

  • Evolving the Diagnosis of MS, so it can be made more quickly, but still be accurate. ( did you know there are 100 other conditions that can cause MS -like symptoms?)
  • getting better at Prognosis – working out who is likely to develop definite MS, and who with MS is most at risk of becoming disabled
  • in order to Personalise treatment – this means ” the right drug, at the right time, for the right person. And, at the right price.” Moving away from ‘first-line’ and ‘second-line’ treatments, to personalised treatments. Did you know that people treated with a disease modifying treatment before the second relapse developed less disability?

This leads into a presentation I saw in the break:

Brain Health – G. Giovanonni (UK)

This is a campaign led by Gavin Giovanonni of Bart’s ( UCL) hospital, London, and an international steering group of MS experts, with funding from some of the major disease modifying therapy (DMT) manufacturers.

The focus was on healthcare professionals, to improve services for people with MS, with, again, speedier diagnosis, prompt treatment, adequate follow up to find out if treatment is working, to allow an alternative or more aggressive treatment if the original one is not having a good enough effect, and certain standards of MS care – eg – noone with MS should get a pressure sore in your area of care etc.

People with MS can get involved with this project, and download the guide  to help get what you need from your neuro services. It also strongly recommends the lifestyle measures to keep your brain healthy that have the most robust clinical evidence in MS to satisfy the health service, like:

  • Exercisebrain-health
  • not smoking
  • not being oeverweight
  • not using too much alchohol
  • exercising your brain
  • continuing with prescribed medical treatment

You know that I believe in doing even more!

http://www.msbrainhealth.org/

 

Rehabilitation strategies – what works? – J. Freeman (UK)

img_3957This presentation was kind of frustrating. Only because we all know physios, OTs, psychologists, physical therapists who do great work that makes a big difference to people with MS’s health and lives. But because we’re not organised or funded to perform large scale randomised controlled trials ( as drugs are), most of the studies done aren’t ‘robust’ enough to prove the effects. This is a problem in and with the evidence based medicine approach – it has a tendency to turn all medicine into pharmaceutical medicine.

The interventions whose evidence is robust enough are:

  • Exercise ( this is coming up time and time again! Did you know that exercise has recently been found to be not just good for you in all the ways we already know, but actively anti-inflammatory?)
  • Endurance training,  and
  • Supported treadmill walking ( probably not massively better than other interventions, just done good research, possibly due to industry funding)

Improving mobility – D. Centonze ( Italy)img_3963

An extremely scientific presentation, suggesting that mobility could be preserved by measures that help to restore excitability to the nerve connections; ‘long term potentation’ and ‘synaptic plasticity’

At this point I really wished that the organisers would round up their presenters and give them presentation skills; however, what I THINK he said was:

Certain interventions can restore excitability, and thus improve mobility. And these are:

  • Exercise ( yes, exercise again!)
  • SSRI antidepressants (I’d have to know a lot more about that before recommending this. Like, is this all theoretical or have they conducted studies to show this effect??
  • Cannabinoids (Likewise)
  • or drugs that use these pathways for their effect
  • Electrical stimulation (because it activates cannabinoid and dopamine receptors)
  • And disease modifying therapy, because it helps to prevent inflammation, which is harmful

Treating MS bladder dysfunction – J. Panicker (UK)img_3967

Nothing new for me as an MS Nurse here; I’ll do a blog on the bladder; but confirmed the point I made earlier in this post about alternatives to anticholinergics that cause cognitive problems, and nice to see it being discussed. Add to that: Darifenacin or Tropsium if you can’t get Mirabegron.

Chasing the driver of fatigue in MS – V.Biberacher (Denmark)

Now this was really interesting. Why people get such fatigue in MS has always been a big question, and one that there are a lot of theories about. These investigators wanted to see
whether it was more associated with damage and lesion load in the brain, which can be measured by MRI scanning, or by inflammation, which can be measured by inflammatory markers in the cerebrospinal fluid ( CSF ) taken by lumbar puncture.

What they found, was that there was no significant relationship between damage and lesion load in the brain, but there was a significant relationship between inflammatory markers in the CSF. This suggests that inflammation, rather than structural damage, is responsible for fatigue in MS.

The take-home from this is that there are many ways to help reduce inflammation in your body – both your drug treatment, and lifestyle measures – eating an anti-inflammatory diet, getting good rest and sleep, becoming more resilient to stress, exercising, sunshine, vitamin D…

Dual lead deep brain stimulation for tremor – S. Oliveria (USA)

Study showing good effects on refractory ( ie won’t respond to any treatment/ drugs) tremor, in a small group of 11 people. 8 (73%) showed benefit at 6 months. 2 did not benefit; they had ataxia ( like clumsiness) rather than tremor. One got infected and had to have the leads removed. Kind of let down by the fact that they used a scale to show effectiveness, which didn’t show the actual result for the person’s functional improvement. So worth finding out about, but not a sure thing until we hear what the results of treatment for the actual people were. Grr!

Hot topic – bone marrow transplantation is a justifiable treatment for active relapsing remitting MS

Now I’m getting too hungry to report on this debate about stem cell /bone marrow

img_3972

When you want to be in two places at once….

 But I’ll try to finish this off tomorrow!

All the very best!

Miranda

 

 

Natural treatments for MS spasms

Natural treatments for spasm in MS

 

 

 

 

 

 

 

 

I often get asked about whether there is anything else apart from muscle relaxantmedication that can be done from MS spasms and stiffness, or spasticity.

Well, yes there is! But first, check you know all the basics about trigger factors, exercise, physio, and medication options – you can see that here:

mstrust.org.uk/a-z/spasticity-and-spasms

Now let’s get onto the natural options.

1) Exercise. Think of this as a preventative. Specific evidence that exercise is good for spasms is scant, mainly because most studies are small and all look at different things – most physios are too busy treating their patients to be immersed in the world of large scale randomised controlled trials! However, there’s good evidence that exercise in MS helps mobility, strength, fitness and mood, and some evidence that regular movement exercise reduces spasms.

I have met people with MS with mild spasms,  who report that on the days that they exercise, they don’t get spasms, and they days that they don’t; they do!

2) Magnesium  can be effective as a relaxant in the nervous system, and so assist with reducing spasm and nerve pain. The recommended highest dose for daily use is 350mg;  there have not been any dangers reported in taking more  until you reach 5000mg and more, but it is possible to overdo.

 

I found one case study on PubMed documenting a markedly succesful case study of magnesium for MS spasm, the other evidence is ‘anecdotal’ – ie, from peoples’ experience.

For fast acting effect, magnesium citrate dissolved in water can sometimes do the job. Some people with MS report good results by using magnesium oil rubbed into the skin. Magnesium oil ( which is not in fact an oil, but magnesium chloride flakes mixed with water) is absorbed more efficiently than oral magnesium, and can be applied directly to the area affected. It’s generally left on for some time, then wiped or washed off.

Safety and drug interactions:

Risk of magnesium toxicity is usually related to severe renal insufficiency—when the kidney loses the ability to remove excess magnesium.

Magnesium toxicity can occur in people with hypothyroidism, those using magnesium-containing medications such as antacids, laxatives, cathartics, and in those with certain types of gastrointestinal disorders, such as colitis, gastroenteritis, and gastric dilation, which may cause an increased absorption of magnesium.

Oral magnesium may reduce the absorption of Gabapentin ( Neurontin) by up to 24%; another reason to try transdermal ( through the skin – oil/spray/cream) application.

Other drugs that may be affected by taking magnesium are listed on this info sheet from

https://ods.od.nih.gov/factsheets/Magnesium-HealthProfessional/

And some more info on magnesium is here: http://articles.mercola.com/sites/articles/archive/2012/12/17/magnesium-benefits.aspx

 

Case study:  David has had MS for many years, and uses an electric wheelchair to get around, both in and outdoors. He works almost full time as a professional photographer. In November 2015, he came to see me in clinic, because leg spasms had started to cause a problem when transferring – it was vital that we sorted this out in order for him to continue to live independently and alone.

We discussed increasing baclofen, but previous attempts had caused a lot of sedation. We discussed the use of tizanidine, but David was interested in whether any natural alternatives could be tried first, before requesting a prescription. We discussed magnesium, and he decided to try using magnesium, and after a bit of research, chose Magnesium 375mg with vitamin B complex, and also started taking Co-enzyme Q10 200mg tablets, three times a day, all of which he got from Healthspan. (Nb. 3 x a day is higher than the ‘recommended daily dose’).

A week or so later, he was noticing an improvement ; he reported that the nuisance leg spasm on standing had gone, and he was also seeing some other improvements.

This is his email:

As requested, here are details of the dose I am taking. I have attached scans of the backs of both packets, so you can see the full contents of each.

Currently, I take one Co Q10 and one magnesium tablet with my breakfast around 8.30am
I take another one of each with dinner at about 6pm.
Every other day, I take a third magnesium tablet at about 9.45pm, just prior to going to bed at 10.30ish.
The effects are most noticeable on the days that I take the third tablet, and the following morning.

Once in bed, I am able to straighten my leg easily, fully and without pain or discomfort.
I sleep better and am not disturbed by my leg spasming during the night.
In the morning, I find it easier to stand up and I can straighten my leg and put my weight on it within a few seconds, as opposed to the 20 or so minutes
that it was taking me before I started the supplements.

When in the kitchen, I find I can balance on both legs for a few moments and have a feeling of “feedback” or connectivity from my calf and lower leg
muscles. Previously, I would always have to have at least one hand on a counter to support myself. Without it, I would slowly lean away from the vertical
without realising and would have to hurriedly catch myself as I started to overbalance.
Over the last three years, I found it increasingly difficult to get out of an armchair and had bought a rising chair. Even with that, I was struggling to stand up,
sometimes needing three or four attempts to stand. Since taking the supplements, I can stand with the chair in the normal seated position.
I also find that I have less urinary urgency, and am able to control my bladder long enough to reach the toilet. (A big improvement, and a great relief!)

Possibly, being able to “feel” my lower leg muscles again is the biggest improvement, even if I cannot persuade them to move when I would like them to.
Best wishes,

David

 

A few weeks later, I saw him in clinic again, where he showed me that he is now able to stand and balance for a few seconds, just 2-3, for the first time in a very long time – which is when I took his picture!natural treatments for MS spasms I encouraged him to consolidate his benefits by working hard in physio, and asked to be kept up to date on any further improvements.

Since then, David has shared his experience with quite a few other people, who I have also heard promising reports from for spasm. I called him today, to see how things were going. He’s retained the benefits, but reduced the dose down to 2 a day rather than 3, as his urine became flourescent yellow. This is actually a sign of excess B vitamins being excreted ( which is also safe) – David thinks that he may well have had a deficiency initially, and is now replete. He’s: using a power-assist exercise bike to keep flexible, finds his right ankle is longer stuck at 90 degrees, having physio once a fortnight,  and can now stand quite well for 15-20 seconds, possibly more – he hasn’t checked!

Thanks, David for sharing your experience. Just because something is ‘natural’, doesn’t mean that it’s wishy washy; people are advised not to take magnesium with muscle relaxant tablets –  but that’s because it enhances their relaxant effect, which is the aim in this case. Natural also doesn’t necessarily mean safe; you should check you don’t have any contra-indicated conditions or medications before starting any supplement regime., and stick to the recommended dose, as supplements can cause harm and damage in high doses.

3) CBD oil. We’ve known for a long time that cannabis can be effective in reducing muscle spasm in MS, and pain in many conditions, but the fact that it’s an illegal drug, and that the medication made from it, Sativex, is so expensive that most health trusts won’t fund prescriptions, has created barriers to its use.

Now, there’s a completely legal alternative, available widely, for example on Amazon, which is CBD oil. This is one of the active constituents of cannabis, but does not contain the THC which makes people feel high. It’s available in liquid form from health food stores, and amazon etc, and can be taken orally by using just one drop under the tongue at first, or vaped with an e-cigarette.

Case study: Alex

Alex scott

 

 

Alex is 37, and was diagnosed with secondary progressive MS in 2012 – and then in  2014 he also broke his back. He was struggling to find any treatment without unacceptable side-effects for whole-body extensor spasms, jerking clonic spasms in his legs that were both painful and wearing, and severe back pain. As a father, he didn’t want to use cannabis, due to the illegality, and decided to try CBD oil in an e-cigarette/vape. He popped in to update me yesterday, and I was happy to hear that:

a) It has really helped. It’s not completely taken the spasms away, but reduced, far less painful and more manageable, especially the extensor spasm. He takes it in the evening only, and it seems to carry through until about midday the next day.

b) It’s quite strong, and has a sedating effect, but not as bad as, for instance, Tramadol, and does not affect thought processes.

c)He advises taking just 1 or 2 puffs and leaving it for 15 minutes to see the effects, and if you use an e-cigarette anyway, use a dedicated chamber for the CBD oil.

Both APS machines

4) Electrotherapies

There is some good quality evidence that TENS can be useful in reducing spasticity – Spasticity is the term that covers the whole clinical spectrum, from shortened, contracted muscles at the worst end, to the occasional spasm, /cramp at the other. It was more effective when used in conjunction with an exercise program than when used alone. I haven’t met anyone who has used TENS for spasms, but we have had some people at the MS Therapy Centre where I work who’ve been using APS Therapy  for pain, who have also reported a reduction in spasms. We are now beginning to expand our trial and therapy to include spasm as an indication for treatment.

 

new era5) Homeopathic tissue salts

One of my patients swears by New Era homeopathic remedy for ‘Fibrositis muscular pain’, which makes sense as the ingredients, in miniscule doses, include magnesium and potassium. This is safe to try, whatever medication you may be on.

 

 

 

So, lots to try, and if you have any more suggestions, please let me know.

all the best, and happy Spring,  🙂

Miranda