Category Archives: Nerve Pain

Let’s Talk To An Inspirational Young Canadian Woman, Paula Orecklin, About CRPS, Sativex, Physiotherapy and Neuroplasticity

Featured Image provided by Paula Orecklin.

Sativex

Sativex is a cannabis-based mouth spray that is used for nerve pain relief in various painful conditions including cancer, complex regional pain syndrome (CRPS) and multiple sclerosis (MS).  It may also reduce spasticity, muscle spasms and sleep disturbances in MS patients (similar to the benefits of medical cannabis).

For more on Sativex, please see my blog post called ‘Medical Cannabis (Medical Marijuana) And Nerve Pain’.

A CRPS Patient, Paula Orecklin 

You may remember Paula Orecklin from my older blog post called ‘CRPS Video On CRPS By PARC’ (26/10/14).

I recently invited Paula to share more of her inspiring story including her challenges with severe chronic pain and her positive experiences with Sativex, physiotherapy and neuroplasticity work.  Paula immediately replied:

“I like being able to do something positive with all of this pain. If this can help other patients, I’m all over it. Sharing my story, talking to other people…I have to make something good out of all of this pain, you know? And I do have a lot of experience, I guess.”

Paula Orecklin (29) from Winnipeg, Manitoba, Canada, has complex regional pain syndrome (CRPS) that involves constant, severe pain in her right knee and lower right leg as a result of twisting her right ankle back in 2001 when she was only 13 years old. Thereafter, Paula couldn’t even put her right foot to the floor without triggering one vicious blast of pain after another, leaving her bedridden and literally screaming in bed for the next 2 weeks. Following this tragic and life-altering event, Paula had to resort to crutches (and later on, canes) for mobility and due to excess pain. She was wheelchair-dependent for a few months during 2004 – 2005 (caused by ‘blowing out her left knee’) and also for 3 years from 2013 to 2015 (due to unbearable pain leading to monthly ER visits for half a year).

Quoting from Paula’s 2013 YouTube (pre-Sativex treatment):

‘…Every single second, I am in pain, from my knee down to my toes. On my right leg, all there is is pain…there is always solid pain from my knee down. On top of that pain, I have other kinds, all different forms [of pain]…stabbing, shooting, burning, visceral, aching, throbbing…This is with all of my medications…’

See YouTube called ‘Paula Orecklin – UNE Patient Case Study – April 4, 2013’:

https://www.youtube.com/watch?v=_aAVOCGW5ac

Following 3 years in a wheelchair due to severe pain, Paula was offered Sativex for the first time in 2015.  In 2016, thanks to Sativex (and other medications), the support of a fantastic physiotherapist and neuroplasticity work with an excellent pain psychologist, Paula was finally able to trade in her wheelchair and crutches for walking canes!

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Image provided by Paula Orecklin.

However, despite Sativex, Paula still has constant, severe pain every single second of her life. In her words:

[CRPS] still has all sorts of horrible kinds of pain [despite Sativex]. I can be doing well and suddenly ‘a giant poker’ has been stabbed through my leg. I was at a meeting on Saturday and in the middle of it, my foot set on fire. I’m always in pain and then on top of that, there are all sorts of different kinds of pain that come on extraordinarily suddenly. What I said in the video [3 – 4 years ago] is exactly what [still] happens today.’

Thus, while Sativex does not eliminate Paula’s base level of constant and severe pain nor her initial sudden pain attacks from occurring, it can block the repetitive flare cycles. By preventing these ongoing vicious pain cycles in 5 minutes, Sativex enabled Paula to finally undergo physiotherapy to improve her function and mobility. In Paula’s words:

“…Sativex is good at keeping the huge flare cycles down… I’m doing better functionally, so much better. But it doesn’t really work on my constant level of pain.”

Before Sativex, Paula suffered from out-of-control pain levels due to sudden and repetitive waves of pain spikes that would combine with her initial pain spike. One pain spike would lead to another pain spike, and on and on it went. This vicious and ongoing pain spike cycle often led to extremely high pain levels until finally her other medications kicked in.

Paula started using Sativex sublingual mouth spray 2 years ago. While it ‘tastes pretty disgusting, like spraying mosquito repellent into your mouth’, Paula said that she was doing very well as Sativex helps her manage her pain levels better. Being a mouth spray, Sativex has the advantage of gaining faster access directly into the blood capillaries via diffusion through the tissues under the tongue.

Paula has a prescription for a refill bottle of Sativex every 8 days. Sativex is not covered by public healthcare where Paula lives in Manitoba, and at CDN256.05 a bottle, Sativex is not cheap. Even though Paula’s private insurance helps defray most of the cost, Paula is still left out-of-pocket CDN60 per bottle. Using up to 12 sprays a day (and even up to 15 sprays on very painful days), a bottle of 90 sprays can go very quickly.

Despite its costs, Paula finds Sativex’s ability to block the repetitive flare cycles worthwhile. For the first time in her life, Paula has finally found a way to stop the vicious and ongoing cycles of pain spikes before they even start. This enables Paula to do physiotherapy and neuroplasticity training despite ongoing, unrelenting and severe pain. For example, she is now able walk between 1 to 2.4 miles with the aid of 2 walking canes.

Paula does not have any side effects from Sativex other than feeling ‘fuzzy everywhere’ on ‘really bad days’ when more than 9 – 10 sprays and increased hydromorph IR are required.

While Paula has tried medical marijuana (medical cannabis), she found it ineffective against her painful flare-ups. In contrast, Sativex is able to stop her pain flares in 5 minutes hence preventing a vicious circle of painful flare-ups. Furthermore, because Sativex looks like a regular inhaler, it is easier for Paula to be seen using Sativex than, say, medical marijuana. In other words, Sativex is not associated with the social stigma associated with using medical marijuana for pain management.

[I’ve gone from being] forced … to leave university, to carrying the Olympic torch [see photo below], to helping found a local CRPS support group, to creating my own Disability holiday….that after 15 years I …still [attend]. I’m going to celebrate it again this March…after 16 years I’m actually going somewhere now.  I’ve managed to make as much of a life out of my circumstances as I can.”

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Image provided by Paula Orecklin.

On behalf of all Canadians with chronic pain, Paula was formally honoured and selected to be an Olympic torchbearer for the 2010 Vancouver Olympic Winter Games. Paula had to practice walking and holding up one of her old crutches (in lieu of the Olympic torch) for 6 – 7 months beforehand.

One very early morning on a cold wintry day at -30C in January 2010 in Virden, Manitoba, Paula successfully fulfilled her pledge to carry the Olympic torch for 500 meters without mobility aids! Needless to say, being chosen as an Olympic torchbearer for the 2010 Winter Olympics to represent all Canadians living with chronic pain was one of Paula’s proudest achievements.

Thanks to a multi-disciplinary approach to CRPS that involved:

  • Sativex treatment;
  • Hydromorph IR and other conventional pain medication;
  • Physiotherapy;
  • Neuroplasticity work (with her pain psychologist); and
  • Various other pain strategies,

Sativex made a huge difference to Paula’s quality of life by opening the door for the first time to physiotherapy, regular exercise and neuroplasticity work, leading to a dramatic improvement in her CRPS symptoms including repetitive painful flares.

In her own words:

‘I’ve found in the past few months that not only have I been able to do more, be out and see people, exercise and still not fall apart, but I’ve also been increasing my tolerance to everything. I’ve actually been using less breakthrough medication, both Sativex and my hydromorph IR. I’m genuinely doing better. I think I’m down to about a bottle every 13 days right now.’

‘Without Sativex, I would never have been able to get to where I am today.

The neuroplasticity would have helped with my own depression due to pain and my understanding of pain and just generally improved my mental state.

But no real improvement physically would have been possible without Sativex.’

‘I’m doing better than I have in a very long time. Sativex is absolutely critical to this upswing. With Sativex, I can give myself medication with every flare of pain. It kicks in in only 5 minutes. The pain doesn’t have a chance to build on itself but is cut down quickly. I can also give myself another spray in 5 minutes if the pain keeps getting worse or doesn’t go down enough.

I can take up to 12 sprays a day and there aren’t really any side effects. I can get a kind of drugged feeling, but it’s not a high nor is it particularly strong. I have to be careful to spray under different parts of my tongue (ie sometimes my tongue’s left side, sometimes up front in the middle, sometimes on the right) so I don’t get wounds under my tongue. However I’ve never had a single one develop. It’ll sting a little when I’ve used a ton of sprays in one spot, but that’s just a reminder to be sure to move it around. And this might be of clinical significance since my skin is very delicate and develops wounds from my CRPS. ….

I mean, the drug is no magical cure, but it’s been absolutely essential to my progress. Without it, I might have gotten some psychological benefit from the neuroplasticity, but I definitely couldn’t be able to move any better. I’d never have ever been in a place where I could work with my physiotherapist. Before Sativex, I was in my wheelchair for nearly everything. I was finally able to walk again because of [Sativex].’

‘I’ve been working with an amazing physiotherapist since this spring. I was finally able to start walking, but was doing it so unevenly I was hurting my good side’s hip. She’s made a big impact on getting me moving.’

‘…I just came home from the gym, did really well I was powering around the track, listening to music, just … moving. And that kind of feels like a medical miracle. I was in such horrible shape for so long, and it just feels so good. And painful of course, but that’s just a given.’ 

‘I’m doing better now than I have in so many years … I’ve never in my life been able to have sustained progress like this.  I’m still disabled, and there are so many things I still can’t do, but that’s not really what I’m concerned with right now. I’m just happy to see where I am now.’ 

‘Sativex has been really important in my life over the past two years, but I just don’t want it to come off like it’s a … well, miracle. It isn’t. It’s made a massive impact on my life, but I’d say that my massive improvement over the past year is only a third down to the spray.’

Paula added, ‘None of anything would have been possible without hydromorphone IR, nor the rest of my medications. Nothing would be possible without my pain specialist at the pain clinic. It really has been a team effort, and that’s not even counting my other physicians, or the essential support network I have. My parents support me 100%, and that’s both emotional and financial. My mother, in particular, is my caregiver and is a huge part of my life. I’m very lucky to have friends who understand and care too. My best friend’s support over the years has meant so much to me too.’ 

‘Now none of those other things helps in the same ways Sativex does. Without it, I wouldn’t be able to move forward and make sustained progress for what is literally the first time in my life since hurting my leg. I’d never managed to go forward at all, ever; plateauing was all I could hope for. But I still feel like all of those other things are coming together to really help me in way that Sativex alone couldn’t. In fact, what’s really amazing is that I’m actually not using as much Sativex as I used to. Everything’s coming together much better than I ever could have expected. My leg is actually dealing with things better, not needing the same amount of as-needed medications. For the first time too, I’m actually finding other non-medicinal things like heat packs are actually helping. Before, it was just way worse when I didn’t have them, but it didn’t lower the pain exactly. So you can say it is kind of a holistic thing – but one that needed Sativex to open the door to it, if that makes sense…’

Having said all of the above, Paula emphasized:

‘[I am] actually never without pain … Sativex helps to stop the vicious circle of escalating pain cycles in 5 minutes.’

‘…I’m still in rough shape. But when that rough shape is so much better than the rougher shape I was in [before Sativex]…

‘[CRPS] is still incredibly disabling. But when you start so low, every few inches up makes a big difference.

Paula’s positive experience with Sativex may offer hope and inspiration to other pain patients to also add Sativex into their overall pain management therapy.

Thank you, Paula, for sharing your beautiful story with us! Despite living with constant, severe pain, your strength and inner beauty never cease to amaze me! People like you are the inspiration and main driving force behind this blog.

With positive thoughts coming your way from everywhere and everyone,

Sabina Walker

Blogger, Pain Matters

Conversations Between Colin Froy, A British Foot Nerve Pain Patient (1952-2013), His Pain Team And The Pain Researchers

Featured Image taken from The Pain Detective (Video), courtesy of Mosaic

Dear Pain Matters readers,

So what is it really like to have nerve pain??  The best way to find out is to actually talk to a patient who suffers from nerve pain.  And that is exactly what the excellent video called ‘The Pain Detective‘ (by Barry Gibb, film maker) did.

Colin Froy, one of the millions of nerve pain sufferers in the world and a policeman who retired in 2011, was diagnosed with myeloma type cancer in the blood (light chain deposition) in 2004.  He received chemotherapy for 6 months including thalidomide drug treatment.  Unfortunately, the latter led to ‘tingling toes syndrome’.

The term ‘tingling toes’ does not do justice to the severity of Colin’s nerve pain.  This term drastically understated the intensity of Colin’s thalidomide-induced nerve pain in his toes from 2004 until his passing in 2013.  In Colin’s words:

‘… the side-effects of thalidomide, they call it tingly toes. Because tingly toes, you think, you know, you get sort of tingle and it goes away, but it’s not like that [laughs], it’s painful toes. I mean, the nerve endings are all shot to pieces, like a dead tree. It gets worse and worse, and you just can’t walk as far as you used to. Now, if I’m lying in bed sometimes, I get this sensation as if someone’s just pushing a needle through the toes, and it lasts for four or five seconds and then it’s gone…’

(Above quoted from ‘The Pain Detective Transcript’:

https://mosaicscience.com/extra/pain-detective-transcript )

The video added that the economic cost of pain in the USA alone is around USD635 billion per year, more than the costs of cancer and cardiovascular disease combined.  In fact, pain is the Number One Reason why people see their GP.

Without further ado, I urge readers to simply watch the 30-minute video (and also read the narrative) that presents many interesting, lively and heart-warming conversations between Colin Froy (1952 – 2013), his caring pain management team and a talented pool of pain researchers who are passionate about their goal to ease nerve pain and suffering (see video link and references, below).

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Images taken from The Pain Detective (Video), courtesy of Mosaic

Despite his unrelenting severe nerve pain, Colin had a positive outlook on life, where ‘his glass was always half full’ instead of ‘half empty’.  Although his nerve pain was enduring until his final days in 2013, his sense of humour and warm smile will always be endearing.

May his message, and that of others with chronic pain, reach our collective heart and soul so that all this pain and suffering is not in vain.

Sabina Walker

Pain Matters Blogger

VIDEO LINK AND REFERENCES

(1) Gibb, Barry J. The Pain Detective (Video) – On The Hunt For New Ways To Treat Pain. Mosaic – The Science of Life (24 June 2014).

https://mosaicscience.com/story/pain-detective

(2) Gibb, Barry J. The Pain Detective Transcript. Mosaic – The Science of Life (24 June 2014).

https://mosaicscience.com/extra/pain-detective-transcript

(3) Gibb, Barry J. Making The Pain Detective. Mosaic – The Science of Life (24 June 2014).

https://mosaicscience.com/extra/making-pain-detective

Patching up Pain with a Lidocaine 5% Patch

Dear Pain Matters readers,

Treatment via a lidocaine 5% patch may offer significant pain relief for patients including cancer patients with focal nerve pain.

Specifically, patients with severe and localised nerve pain including one of the following painful conditions may benefit from a lidocaine 5% patch that topically delivers lidocaine:

  • Postherpetic neuralgia and herpes zoster (shingles);
  • Non-diabetic and diabetic peripheral neuropathy;
  • Trigeminal (orofacial) neuropathic pain;
  • Erythromelalgia;
  • Chronic low back pain (Hines et al, 2002);
  • Post-surgical neuropathic pain (e.g. following surgery for cancer or otherwise); and
  • Neuropathic pain directly attributable to cancer.

Lidocaine works by blocking sodium channels including Nav1.7 that underlie many nerve pain conditions (and other mechanisms).  The release of very small amounts of lidocaine transdermally via the patch ensures that motor and cardiac functions remain unaffected.

While topical lidocaine patches leads to pain relief in 29%-80% of treated patients, likely via small-fiber block, it is not clear why lidocaine patches may work better in some patients than in others (Krumova et al, 2012).

The topical lidocaine patch, measuring 10 cm X 14 cm, should only be applied on top of unbroken skin and where the pain is the greatest.  Patches should only be used by patients who are not allergic to local anaesthetics including lidocaine and who are not sensitive to the adhesive material itself.

The recommended maximum daily dose is 3 patches worn simultaneously for 12 hours at a time.  Since the lidocaine patch can only be worn for 12 hours at a time each day, other pain medications may be necessary, especially during sleep.

A Young Patient With Episodic Erythromelalgia In Both Feet

A 15-year old Caucasian girl who suffered disabling pain during episodes of erythromelalgia in both feet derived complete pain relief almost immediately after applying lidocaine 5% patches to the top of both of her feet, both at rest and during almost normal levels of activity.  

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Post-lidocaine patch treatment, the young patient was able to run around the track at school, play soccer, return to her physical education class, march in the school band and walk around the shopping mall for almost an hour.  As long as she did not overdo her activities, she was able to obtain 100% relief during the 12 hours of lidocaine patch use, plus another 2-3 hours after patch removal.  The patient slept without the patches.

Whilst offering complete local pain relief and no side effects, the lidocaine patch was unable to prevent the other symptoms of erythromelalgia from occurring including bright red skin and over-heated feet following physical exertion.

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(Davis & Sandroni, 2002, including both images).

Two (2) Patients With Neuropathic Pain Syndrome     

A 74-Year Old Female Patient With Herpes Zoster (Shingles)

Despite prompt treatment for a herpes zoster skin rash, a 74-year old woman developed stabbing and burning pain in her rash-affected area.  The patient was offered 2 lidocaine patches daily to cover the painful region.  Within 4 weeks treatment, the patient obtained 75% relief from pain caused by her herpes zoster skin rash.  Most of her systemic pain medications were stopped.

A 56-Year Old Male Patient With Severe Neuropathic Pain Syndrome Following Microsurgery For A Neuroma in Right Foot 

A 56-year old man suffered severe nerve pain shortly after microsurgery to his right foot due to an interdigital neuroma.  His painful symptoms included severe burning pain, mechanical hyperalgesia and allodynia, together with other symptoms.  As a result, he could no longer work, was unable to wear socks and shoes (only sandals) and withdrew from his family and friends.

After applying half of a lidocaine 5% patch daily onto his painful skin region, the patient reported positive results.  After 8 weeks of lidocaine patch treatment, the patient enjoyed an 80% reduction in overall pain levels and consequently returned to work.  There were no side effects and the patients was able to stop all other analgesics (Hans et al, 2010).

Trigeminal (Orofacial) Neuropathic Pain And Lidocaine Patch Treatment

A British study revealed that lidocaine 5% patch treatment led to improved pain levels in 12 of 14 trigeminal pain patients including oral surgery patients.  Nine (9) of the 12 patients were able to reduce or stop their intake of other pain medications.  Given that the majority (12/14) patients with trigeminal nerve pain benefited from lidocaine 5% patch treatment, further studies are warranted (Khawaja et al, 2013).

Cancer Patients And Lidocaine Patch Treatment

A large Australian study in a comprehensive cancer centre revealed that lidocaine 5% patch treatment had a ‘potent analgesic effect’ in 24 of 95 (25%) patients while another 23 patients (24%) reported a ‘partial effect’.  Given that almost half (47/95, or 49%) of all cancer patients with nerve pain benefited from lidocaine 5% patch treatment, further research is warranted (Fleming and O’Connor, 2009).

Current Study Involving Lidocaine Patch for Lower Limb Amputation Pain

A Belgium-based trial is currently recruiting up to 20 patients with pain following above- or below-knee amputation to assess the effectiveness of lidocaine patch treatment for peripherally-mediated phantom limb pain and/or stump scar hyperalgesia (Hatem, 2016).  Stay tuned for updates…

Summary

While lidocaine 5% patch treatment is expensive and there is a small risk of a skin rash, many patients with focal nerve pain obtain significant pain relief from the lidocaine 5% patch, a targeted peripheral analgesic that is non-addictive and safe for long-term use.  

Now that’s a good way to patch up pain!

Sabina Walker

Blogger, Pain Matters

REFERENCES

(1) Davis, Mark D P; Sandroni, Paola. Lidocaine Patch for Pain of Erythromelalgia; Arch Dermatol. Jan 2002;138(1):17-19

doi:10.1001/archderm.138.1.17

http://jamanetwork.com/journals/jamadermatology/fullarticle/478622

(2) Fleming JA, O’Connor BD.

Use of lidocaine patches for neuropathic pain in a comprehensive cancer centre.

(Utilisation des timbres de lidocaïne pour la douleur neuropathique dans un centre d’oncologie)

Pain Research & Management : The Journal of the Canadian Pain Society. 2009;14(5):381-388

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2779156/#!po=28.7879

(3) Hans G, Robert D, Verhulst J, Vercauteren M. Lidocaine 5% patch for localized neuropathic pain: progress for the patient, a new approach for the physician. Clinical pharmacology : advances and applications. 2010;2:65-70

doi: 10.2147/CPAA.S9795

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3262358/

(4) Hines R, Keaney D, Moskowitz MH, Prakken S. Use of Lidocaine Patch 5% for Chronic Low Back Pain: A Report of Four Cases. Pain Med 2002; 3 (4): 361-365

doi: 10.1046/j.1526-4637.2002.02051.x

https://academic.oup.com/painmedicine/article-lookup/doi/10.1046/j.1526-4637.2002.02051.x

(5) Khawaja N, Yilmaz Z, Renton T. Case studies illustrating the management of trigeminal neuropathic pain using topical 5% lidocaine plasters. British Journal of Pain. 2013;7(2):107-113.

doi:10.1177/2049463713483459

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4590123/#!po=23.6842

(6) Hatem, Samar; A Trial of Lidocaine Patch for Lower Limb Amputation Pain (Trial ongoing since 2016); Brugmann University Hospital

https://clinicaltrials.gov/ct2/show/study/NCT02696720?view=results

(7) Krumova EK1, Zeller M, Westermann A, Maier C. Lidocaine patch (5%) produces a selective, but incomplete block of Aδ and C fibers. Pain. 2012 Feb;153(2):273-80.

doi: 10.1016/j.pain.2011.08.020.

https://www.ncbi.nlm.nih.gov/pubmed/21995882

(8) Devers A, Galer BS. Topical lidocaine patch relieves a variety of neuropathic pain conditions: an open-label study. Clin J Pain. 2000 Sep;16(3):205-8.

https://www.ncbi.nlm.nih.gov/pubmed/11014393

(9) Many Other Lidocaine Patch/Pain Studies Can Be Found Here:

http://www.druglib.com/druginfo/lidoderm/abstracts/

Medical Cannabis (Medical Marijuana) and Nerve Pain

Source of Featured Image:

http://www.nhs.uk/news/2010/08August/Pages/cannabis-and-chronic-nerve-pain.aspx

Dear Pain Matters blog readers,

Cannabis has been used for medicinal benefits including pain relief by many cultures for hundreds of years or more.  While some patients smoke cannabis for medicinal purposes, others may prefer to make cannabis tea or bake cannabis cookies.

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Is Medicinal Marijuana Effective for Nerve Pain?:

The use of marijuana for chronic pain relief is not new.  Many patients attest to its ability to relieve pain, while many physicians acknowledge its efficacy in patients with intractable pain who were otherwise left with few other options.

According to Mark Ware, Pain Clinician, McGill University, Montreal, Canada, endogenous cannabinoids bind with cannabinoid receptors presynaptically, blocking the release of neurotransmitters in pain-producing pathways, resulting in less pain.

As agonists, synthetic (e.g. nabilone – see earlier  Blog Post, referenced below) and plant-derived cannabinoids (i.e. derived from marijuana) bind with these same cannabinoid receptors, leading to reduced pain.

https://painmatters.wordpress.com/2014/10/29/nabilone-for-chronic-pain-including-nerve-pain/   (Nabilone for Chronic Pain Including Nerve Pain (e.g. CRPS))

Sativex (Nabiximols, in US):

Sativex (Nabiximols), a cannabis-based mouth spray, was approved in the UK as adjunctive treatment for relief of neuropathic pain in multiple sclerosis (MS).  Some trials showed that Sativex significantly reduced neuropathic pain, spasticity, muscle spasms and sleep disturbances in some MS patients.  Care must be taken to manage adverse effects including dizziness, sleepiness, fatigue, dry mouth and drowsiness.  The long-term effects including risk of tolerance are unknown (Perras, 2005). 

Sativex (Nabiximols) is approved in Canada for the treatment of nerve pain and spasticity in MS as well as cancer pain.

Smokeless Delivery Systems Including Vaporizers and Cannabis Inhalers:

Due to the risk of lung damage that may be caused by smoking medicinal cannabis, smokeless delivery systems including vaporizers (and soon, cannabis inhalers) may be useful.

Vaporizers can avoid possible lung damage as they can be used to heat the medicinal cannabis herb sufficiently without burning it nor creating smoke.  Vaporized cannabis has analgesic efficacy at low dose with minimal and well-tolerated psychoactive effects (Wilsey et al, 2013).

Research into cannabis inhalers is currently being done that uses cannabis processed into granules.  This device ensures that dosages are better controlled and that blood tetrahydrocannabinol (THC) delivery levels remain well below ‘recreational levels’ (i.e. that can lead to a ‘high’).  This particular study involving 8 patients with chronic nerve pain showed a 45% reduction in pain intensity, 20 minutes post-inhalation (that returned to baseline within 90 minutes).  The only adverse effect was lightheadedness that lasted 15-30 minutes and that did not require intervention (Eisenberg et al, 2014).

Is Medicinal Marijuana Legal?: 

Please check with local authorities including local physicians regarding the legalities of medical marijuana. 

In Australia, marijuana is legal in most states and territories for certain medical conditions and only if prescribed by a doctor.

In the US, the sale and possession of cannabis was recently decriminalized for both medical and recreational users who are of legal age in 5 states (Alaska, Colorado, Oregon, Washington and Washington DC).  However, marijuana possession or use (medical or otherwise) is still illegal and considered a federal crime under federal law in the US.  

In Canada, medical marijuana use is legal as long as the patient has a licence for this.  As of 24 August 2016, medical marijuana patients can grow their own ‘limited amount’.

Medical marijuana via doctor’s prescription was legalized in March 2017 in Germany. The Federal Health Minister, Hermann Gröhe, stated:

‘Our goal is that seriously ill people are looked after to the best of our ability.’

Gröhe added that health insurance companies should cover the costs of medical marijuana in cases where treatment alternatives do not exist.

In Switzerland, marijuana is legal since 2016 as long as the tetrahydrocannabinol (THC) component is less than 1%.  Legally restricting THC in cannabis to very low levels will ensure that a recreational ‘high’ will not occur (as opposed to THC-rich cannabis that can cause a recreational ‘high’). Thus, THC-poor cannabis is legal in Switzerland.

On the other hand, the cannibinoid (CBD) component of marijuana (aka CBD-Cannabis) is legal as it does not lead to a recreational ‘high’. Importantly, it may offer pain relief, reduced nausea and other medical benefits.

Medical cannabis is legal in other countries including Uruguay, Israel and Jamaica.

Summary:

Medical marijuana may offer pain relief today to patients with severe, intractable pain where other pain treatments have failed.

Quoting Mark Ware:

[The pharmaceutical approach is] “promising, highly protected with patents, and highly financially rewarding [and] will take 5 to 10 years.  We have patients struggling now and need to figure out how to use this [medical marijuana] today.”  

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Source of photo:   http://www.painresearchforum.org/news/48905-treating-neuropathic-pain-cannabis-pro-and-con

Sabina Walker

“Sedare dolorem divinum opus est”
“It is divine to alleviate pain”

Galen, 130-200 C.E.

REFERENCES:

Media 

Is Medicinal Marijuana Effective for Nerve Pain?

(1a) Treating Neuropathic Pain With Cannabis: Pro and Con

Debate-Style Session at World Congress on Pain Focuses on Safety, Efficacy of Marijuana for Neuropathic Pain

Pat McCaffrey

Pain Research Forum (22 Dec 2014)

http://www.painresearchforum.org/news/48905-treating-neuropathic-pain-cannabis-pro-and-con

Attachment (Slides by Mark Ware):

http://www.painresearchforum.org/sites/default/files/attachments/WareCannabisDebateslides.pdf

(1b) Researchers Urge Medical Marijuana Over Opioids to Treat Neuropathic Pain

Mike Hager

http://www.theglobeandmail.com/news/british-columbia/researchers-urge-medical-marijuana-over-opioids-to-treat-neuropathic-pain/article26733746/

Is Medicinal Marijuana Legal?

United States of America

(2a) State Medical Marijuana Laws

20 July 20 2016

http://www.ncsl.org/research/health/state-medical-marijuana-laws.aspx

Canada

(2b) Medical Marijuana Patients Can Grow ‘Limited Amount’ of Cannabis at Home Under New Laws – Change Comes After Federal Court Said Old Rules Were Unconstitutional

Andrew Foote

CBC News (11 August 2016)

http://www.cbc.ca/news/politics/medical-marijuana-home-growing-law-1.3716860

(2c) Medical Marijuana Easier to Grow at Home With New Rules – Some Doctors Say Medical Cannabis is Safer than Opiates, While Others Say It’s Too Unpredictable

Julia Wright

CBC News (25 Aug 25 2016)

http://www.cbc.ca/news/canada/new-brunswick/growing-medical-cannabis-1.3735112

Australia

(2d) Senate passes medicinal cannabis legislation

Jane Lee

Sydney Morning Herald (24 February 2016)

http://www.smh.com.au/federal-politics/political-news/senate-passes-medicinal-cannabis-legislation-20160224-gn2gjk.html

Germany

(2e) Germany to Legalize Medicinal Marijuana by 2017

Joshua Berlinger

CNN (4 May 2016)

http://edition.cnn.com/2016/05/04/europe/germany-medicinal-marijuana/

In German

(2f) Schmerztherapie – Hype um vermeintliche Wunderarznei: Was Cannabis kann – und was nicht.

Sabine Dobel, Gisela Gross

Stern (3 June 2017)

http://www.stern.de/gesundheit/extra-schmerz/cannabis-in-der-medizin–was-das-mittel-kann—und-was-nicht-7479856.html

This article also includes the following 2-minute video (also in German):

http://www.stern.de/gesundheit/fragen-verstehen/cannabis-legalisieren–die-krux-des-freien-kiffens-6805902.html?utm_source=social&utm_medium=share&utm_campaign=artikel-video

Switzerland

(2g) Swiss cannabis entrepreneurs develop craving for low-potency pot.

Marina Depetris, John Miller

Reuters (22 March 2017).

http://www.reuters.com/article/us-swiss-cannabis-light-idUSKBN16S2D4

In German

(2h) Kiffen light – so wirkt das legale Cannabis aus der Schweiz

Laila Keuthage

Stern (17 May 2017)

http://www.stern.de/gesundheit/kiffen-light—so-wirkt-das-legale-cannabis-aus-der-schweiz-7448666.html

Peer-Reviewed Papers

(3) Wilsey B, Marcotte TD, Deutsch R, Gouaux B, Sakai S, Donaghe H.

Low Dose Vaporized Cannabis Significantly Improves Neuropathic Pain.

The Journal of Pain (2013);14(2):136-148.

doi:10.1016/j.jpain.2012.10.009.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3566631/pdf/nihms439212.pdf

(4) Perras C.

Sativex for the Management of Multiple Sclerosis Symptoms.

Issues Emerg Health Technol. 2005 Sep;(72):1-4.

https://www.ncbi.nlm.nih.gov/pubmed/16317825

(5) Eisenberg E, Ogintz M, Almog S

The Pharmacokinetics, Efficacy, Safety, and Ease of Use of a Novel Portable Metered-Dose Cannabis Inhaler in Patients With Chronic Neuropathic Pain: A Phase 1a Study

Journal Of Pain & Palliative Care Pharmacotherapy (2014); 28(3)

doi.org/10.3109/15360288.2014.941130

http://www.tandfonline.com/doi/full/10.3109/15360288.2014.941130

 

Successful Treatment of Primary Erythromelalgia with Ziconotide (Prialt)

Dear Pain Matters blog readers,

Here is an interesting case:

Primary Erythromelalgia Treated with Intrathecal Ziconotide:

A 31-year old woman suffered from primary erythromelalgia for most of her life.  Symptoms included:

  • Painful reddish skin and swelling in both feet and lower legs;
  • Loss of vision in right eye and severely impaired vision in left eye (due to bilateral congenital glaucoma, exophthalmos/abnormally protruding eyeballs and megalocornea);
  • Constant erythema and excessively warm lower legs;
  • Severe pain including:
    • Intense burning throughout both the lower legs;
    • Allodynia near the perimalleolar regions in both ankles; and
    • Hyperalgesia in bilateral gastrocnemius and instep (arched part of feet).

Physical examination confirmed warmer skin temperatures in the lower legs, very strong burning pain (10/10, when lying very still) and swollen ankles.  The skin on her feet was thickened, red and ulcerated, due to her habit of immersing her feet in cold water as often as possible (as part of self-medication).  Refer to (a) in first photo.  

March 2010 –

After trying ‘almost everything’, a decision was made to trial and implant an intrathecal pump drug delivery system in March 2010.

A low titration schedule from 0.3 mcg/die to 1.2 mcg/die of ziconotide was commenced.  This resulted in complete resolution of both allodynia and hyperalgesia.

Dosage was increased to 1.8 mcg/die.

It is noteworthy that the severe swelling and oedema in both lower legs and feet was significantly improved after 1 week of ziconotide treatment.  Refer to (b) in first photo.

CRIM2015-592170.001.jpgSource:   Russo et al, 2015

April 2013 (3 Years Later) –

In April 2013, the patient presented 4 days late for pump recharging.  This delay resulted in both legs and feet being swollen with burning pain.  Refer to (a) in below photo.  

Following (4-day-delayed) refill, her legs and feet were no longer swollen 2 days later, and there was nil burning pain 1 week later.  Refer to (b) in below photo.  

CRIM2015-592170.002.jpgSource: Russo et al, 2015

Summary:

The woman no longer had to immerse her feet in cold water resulting in improved skin appearance.  She was able to rest in a bed now (instead of staying up in a chair for months).  Overall, ongoing intrathecal ziconotide treatment offered an improved quality of life for the patient.

Long-term use of intrathecal ziconotide does not lead to addiction or tolerance.

Mechanisms:

Ziconotide exerts its analgesic effects by potently and selectively blocking neuronal N-type voltage-sensitive calcium channels at the presynaptic level, hence inhibiting neurotransmitter release.

Conclusion:

It is promising to see that severe pain including burning pain, hyperalgesia and allodynia, as well as swelling, redness and excessive warmth of lower legs and feet in patients with primary erythromelalgia may be managed by intrathecal ziconotide treatment in some cases.

Sabina Walker

“Sedare dolorem divinum opus est”
“It is divine to alleviate pain”

Galen, 130-200 C.E.

REFERENCE:

Russo R, Caroleo MC, Cione E, Perri M, Paparo MT, Russo A.

Dual Effect of Ziconotide in Primary Erythromelalgia.

Case Reports in Medicine (2015); Volume 2015, Article ID 592170, 4 pages.

doi:10.1155/2015/592170

https://www.hindawi.com/journals/crim/2015/592170/

 

 

 

 

Ziconotide (Prialt) and Complex Regional Pain Syndrome – 2 Successful Cases

Dear Pain Matters blog readers,

Almost 2 years ago, I wrote a Blog Post called:

Ziconotide (Prialt) for Nerve Pain Including CRPS?

https://wordpress.com/post/painmatters.wordpress.com/344

Quoting from my older Blog Post:

“….Ziconotide for 7 CRPS Patients ….. 2 patients had complete pain relief and as such, discontinued Ziconotide treatment altogether…… (Kapural et al, 2009).”

I find it fascinating that intrathecal (IT) ziconotide treatment resulted in complete pain relief for these 2 patients.

It is worthwhile elaborating further on these 2 former CRPS1 patients here:

(1) Patient 1 –

A male patient (Patient # 1, 16 years old, male) had CRPS1 in both of his legs following an Achilles tendon tear 2 years earlier.  He suffered burning pain, hypersensitivity to touch/temperature changes and loss of proprioception in both feet.  Pain management treatments including lumbar sympathetic blockade and various oral medications were unsuccessful.  The patient used a wheelchair for mobility.

During a ziconotide trial, dosages were titrated from 2.4 mcg/d to 24 mcg/d over 3 months.  His VAS score reduced from 100 mm to 40 mm by the 4th month of the ziconotide trial, and he was able to upgrade from a wheelchair to a cane for mobility.

The patient underwent IT pump implantation, and dosages were titrated from 5 mcg/d to 7.5 mcg/d over a 7 month period (with some side effects that were treated).

During the 2nd year, ziconotide dosage was reduced to 4.5 mcg/d.  The patient was finally pain-free, and he was able to resume normal activities.

By the 3rd year, ziconotide dosage was further reduced to 1.2 mcg/d, and he stopped taking oral medications altogether.  The patient continued ziconotide treatment (ranging from 1.2 to 1.4 mcg/d) for another 4 years, and this enabled him to be pain-free and active.

Post-7 years ziconotide treatment, during which he remained pain-free, (quoting from page 299) ‘his IT pump was filled with normal saline in preparation for an explanation’ (Kapural et al, 2009).

(2) Patient 2 – 

A female patient (Patient # 2, 32 years old, female) had CRPS1 in both of her legs due to a fall 5 years earlier.  The patient suffered burning pain and hypersensitivity to touch/temperature changes, and she preferred to use a wheelchair for mobility.  Pain management treatments had failed her completely including multiple oral medications, lumbar sympathetic blockade and spinal cord stimulator, SCS (VAS score, 100 mm).

Following a successful ziconotide trial, she agreed to IT pump implantation.  Dosages were gradually titrated upwards from 10 mcg/d to 145.5 mcg/d over 2 years, with no adverse events.  The patient continued at this dosage of 145.5 mcg/d for another 6 years.

After 8 years of ziconotide treatment, the IT pump no longer worked.  While waiting for a new IT pump, the patient noticed that she no longer had any pain.  As such, she stopped taking systemic opioid medication.  She was also able to walk without an assistive device.  Her defective IT pump and SCS were surgically removed one month later.

A year following removal of her IT pump and SCS, the patient remained pain free (VAS score, 0 mm) and had returned to college (Kapural et al, 2009).

Summary:

Ziconotide treatment (via a spinally-implanted pump) can offer significant pain relief, and may even, at appropriate dosages, lead to full recovery from CRPS1 for selected CRPS patients.  

It is paramount that ziconotide be titrated to avoid serious side effects.  The importance of correct dosage was discussed at great length in an earlier Blog Post:

https://painmatters.wordpress.com/2015/08/07/ziconotide-prialt-user-reviews-is-dosage-an-issue/.

Sabina Walker

“Sedare dolorem divinum opus est”
“It is divine to alleviate pain”

Galen, 130-200 C.E.

PS For those of you who want to learn more about cone snails (that inspired medical research into ziconotide), here is a 2 – 3 minute YouTube called ‘Killer Cone Snails’.  

NB If you find aggressive animal behaviour disturbing, please refrain from watching this YouTube:

REFERENCES:

(1) Kapural L, Lokey K, Leong MS, Fiekowsky S, Stanton-Hicks M, Sapienza-Crawford AJ, Webster LR (2009)

Intrathecal Ziconotide for Complex Regional Pain Syndrome: Seven Case Reports.

Pain Practice (2009), 9: 296–303.

doi:10.1111/j.1533-2500.2009.00289.x

http://onlinelibrary.wiley.com/doi/10.1111/j.1533-2500.2009.00289.x/abstract;jsessionid=6C89A05D226657327BD3D4FEF4221488.f04t04

More on Intrathecal Delivery of Ziconotide –

(2) Palca, Joe

Snail Venom Yields Potent Painkiller, But Delivering The Drug Is Tricky

3 August 2015

http://www.npr.org/sections/health-shots/2015/08/03/428990755/snail-venom-yields-potent-painkiller-but-delivering-the-drug-is-tricky

 

Ziconotide (Prialt) User Reviews – The Fine Line Between Maximizing Pain Relief and Minimizing Severe Adverse Effects

Source of Featured Image:

https://en.wikipedia.org/wiki/Conus_magus

Dear Pain Matters blog readers,

Many nerve pain sufferers say they have tried EVERYTHING, to no avail.

The good news is that some patients with severe, intractable nerve pain obtain pain relief following Ziconotide (Prialt) treatment (while, sadly, others don’t).

Ziconotide (Prialt) is synthesized based on the venom of a marine snail called Conus magus.

For further details on Ziconotide (Prialt), please refer to literature including a paper by McGivern (2007).  You are also welcome to go to my earlier blog post, here:

https://painmatters.wordpress.com/2014/11/10/ziconotide-prialt-for-nerve-pain-including-crps/

BRIEF ANALYSIS OF ‘PRIALT USER REVIEWS’

An internet site called ‘Prialt User Reviews’ offers a collection of patient reviews:

http://www.rxlist.com/script/main/rxlist_view_comments.asp?drug=prialt&questionid=fdb92576_pem

The ‘Prialt User Reviews’  show that Prialt treatment may be a ‘hit-or-miss’ treatment for many patients with severe nerve pain.  Thus, while some severe nerve pain sufferers obtained significant pain relief from Prialt (that outweighed its side effects), many others were worse off due to Prialt’s severe side effects.

SOME POSITIVE ‘PRIALT USER REVIEWS’ 

A patient with low back pain commented:

“I did not realise how much this new drug helped me until I had to come off of it for a short period of time.”

Another pain patient wrote:

“I developed a BAD reaction to this med, even though it worked great for my pain.  Now I have all kinds of allergies and having trouble finding a med that is as effective without side effects.

A pain patient with 2 spinal operations wrote:

“Since I’ve had the pump, the pain is no longer in my legs.  I will be ever thankful to that little snail and its ooze.  God bless researchers.” 

A patient with chronic pain for over 10 years had a positive experience with Prialt.  In her own words, “…since I have been on these meds, things have turned around for the good….I thank God every day that I have my life back….”

Another pain patient stated:

“This for me has been a “life changing” positive experience.  I have been on the drug well over six years with NO side effects whatsoever….This has changed my life for the better as I am now able to do volunteer work…I had my occipital nerves sectioned as well as steroid-induced osteoporosis, so totally endorse this drug for neuropathic pain.”

A cancer survivor with chronic pain stated:

“My pain was due to cancer which is now in remission.  My first pain clinic pushed me too hard to increase Prialt and side effects were bad!  I heard music and it felt like my teeth were melting!  I kept reducing my Prialt until it was mixed w/a narcotic and that combination made my pain level from a constant 9 … to a livable 5-7!  This is the lowest my pain level has been in 9 yrs! … I am finally pleased with my Prialt and my Life.  After 8 years of trying different combinations and Prialt Levels and 1 pump reposition and 1 pump replacement, I am finally able to Live.  I can meet my husband for lunch most days ….Yes, it took several years to get the level just right and the side effects lower, but it was totally worth it to finally have a more normal and happy life!”

SOME NEGATIVE ‘PRIALT USER REVIEWS’ 

A patient with CRPS (RSD) for 8 years stated that Prialt is thebest at relieving pain BUT it’s not worth the side effects I get….several bad experiences and I always stuck it out since the relief was so good.  It’s no longer worth it.  I have no life, hardly leave the house and spend most of the time talking to myself’.

A former user said This medicine did help my nerve pain (moderately) but the memory loss is horrible.  I lost 50 lbs in 6 months.  I can’t concentrate well, agitated, no motivation, have extreme anxiety……I started having a pungent perfumey-like smell constantly, which started to become an obsession…..led up to a full blown manic episode …no sleep….thoughts of not wanting to live anymore….border-line psychosis….I’ve been off this medication for over 2 weeks now but still suffer from some of these side effects…..”

A pain patient who unsuccessfully underwent a Prialt trial wrote:

“…I started an IT pump trial with Prialt…..and the med was increased slowly (started out with about 4 mcg/day.  Increased eventually to about 7 mcg/day).  With the first increase, my pain improved (decreased).  With each successive increase of Prialt, my pain increased and so did side effects.  I became extremely dizzy, nauseated (with vomiting), confused, lethargic, my vision blurred, and I was unable to do anything but lie in bed and wonder what Prialt was doing to my brain…..”

IS DOSAGE AN ISSUE?

I find it very interesting that nerve pain levels did improve in several patients following Prialt treatment, despite severe side effects (see above).

Is it possible that the intrathecally-administered (spinally-administered) dosages were simply too high for those who suffered severe side effects, post-Prialt treatment?

Would nerve pain patients benefit from lower Prialt dosages for longer periods (before deciding to increase dosages)?  

Consider this example:

A 59-year old female with severe pain due to chronic trigeminal neuralgia (TN) pain underwent a single-shot trial of intrathecal ziconotide.  To reduce any adverse effects, the ziconotide dosage was intentionally kept very low, at only 1 mcg.  The patient’s TN pain levels dropped from ‘9’ to ‘6’ (that, unfortunately, returned to her original pain levels of ‘9’, 4 hours-post-ziconotide).  As such, 1 mcg/day ziconotide was added to her intrathecal combination of morphine and clonidine.  At this low dosage, the patient reported significant relief from TN, and (importantly!) no side effects (Michiels et al, 2011).

According to Webster (2005), to minimise adverse effects while also maximising pain relief, initial dosages must be very low and titrated very slowly.  Thus, for many patients, there is a fine balance between minimal adverse effects and maximal pain relief (Webster, 2005).

Ongoing studies are warranted to ascertain why Prialt treatment offers pain relief (with minimal side effects) for some nerve pain patients, but not for others.

Many patients had to stop using Prialt due to extreme, horrific, and intolerable side effects that included severe mental impairment, psychosis, personality changes, memory loss, hallucinations, minor to severe swelling of joints, tremors, paranoia, pain, bad mood swings, problems with sleeping, hearing loud music 24/7, confusion, anxiety attacks, depression, suicide risk, severe sinus infection, slurring speech, severe neurological symptoms, vision problems, severe weight loss, burning skin/electric shock sensations and allergies.  NB It is not clear whether some of the aforementioned side effects were solely caused by Prialt and/or due to other unknown factors.  Further studies of Prialt’s side effects are warranted.

Many studies into other novel drugs are underway (more later).

Wishing all pain patients less suffering and more hope.

Sabina Walker

PS  Please read the entire Prialt Patient Information Including Side Effects sheet before deciding to use Prialt.

http://www.rxlist.com/prialt-drug/patient-images-side-effects.htm

Also (quoting):

“Patient Comments are not a substitute for professional medical advice, diagnosis, or treatment…..”

http://www.rxlist.com/script/main/rxlist_view_comments.asp?drug=prialt&questionid=fdb92576_pem

PPS  It is important to note that not all Prialt users will offer feedback (positive or otherwise).  Furthermore, human nature tends to focus on the negative, rather than on the positive.  It is possible that many who obtain pain relief from Prialt choose not to post comments, while others who suffered severe side effects due to Prialt may offer feedback (to help others).

REFERENCES

(1) McGivern; Ziconotide: a review of its pharmacology and use in the treatment of pain; Neuropsychiatr Dis Treat. 2007; 3(1): 69–85.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2654521/

(2) RxList – The Internet Drug Index

Prialt User Reviews

http://www.rxlist.com/script/main/rxlist_view_comments.asp?drug=prialt&questionid=fdb92576_pem

(3) For more information on Prialt, please refer to:

http://www.rxlist.com/prialt-drug/consumer-uses.htm

http://www.rxlist.com/prialt-drug/patient-images-side-effects.htm

http://www.prialt.com

(4) Michiels et al; Trigeminal neuralgia relief with intrathecal ziconotide; Clin J Pain 2011; 27:352-354.

http://www.researchgate.net/publication/51052321_Trigeminal_neuralgia_relief_with_intrathecal_ziconotide

(5) Webster; Ziconotide in Complex Regional Pain Syndrome (2005)

http://rsds.org/ziconotide-in-complex-regional-pain-syndrome/