+100%-

“It comes down to the simple fact that I do not have enough energy to sustain my recovery. I am not sure that everyone in the CFS is like me, maybe I’m an outlier or just have a unique presentation of the condition. In any case I am at my breaking point. I hope that the future will hold some effective treatments for these conditions.” Darden

Darden was a singer, piano player and teacher and composer.

Last August, I just happened to glance down at my phone as I was driving through Idaho.  Darden had emailed…but no, it was Mike, her husband. After a baffling and devastating relapse brought on by a seemingly innocuous treatment, Darden had ended her long battle with ME/CFS. She left behind her husband, two daughters, a grandson and her brothers.

No one could have predicted it would have come to this just 8 months earlier.

I pulled over and got in touch with my partner, who burst into tears.  We’d stayed at Darden and Mike’s beautiful house on Bainbridge Island and camped on their land two summers ago. We’d witnessed a colt being born, heard Darden play piano and sing, met the infamous “Ned Pepper” – an appropriately named rambunctious puppy who couldn’t stay still – and had generally been overwhelmed by their hospitality.

A Long, Long Battle

It had been a long battle, indeed, for Darden. She first became ill over 45 years ago, in 1973. Like many others, she’d pushed through as best she could, completing her college education, working in a part-time career as a piano teacher and musician, and becoming a mother. When she was well enough, she gave piano lessons to young people and directed the concert series “First Sundays at the Commons” (www.firstsundaysconcerts.org).

When we saw her, Darden, was dealing with her ME/CFS issues in the way she had for decades – researching, trying to think her way through them, and thanks to her very, very supportive husband – Mike –  trying new things.  At one point, though, talking to her on the stairs, we caught a glimpse of what a strange nervous system she had:  her teeth had started chattering.

But Darden, as always, was managing. She been through two really rough spots over the years – both involving an inability to sleep – but had gotten past them and was doing better. She had a lovely house, a wonderful family and her supportive husband. To her surprise, she’d even made it through her daughter’s wedding without issue.

Healthwise, things had been slowly looking up, as well. Her longtime nutritional balancing program seemed to be working, although, just prior to her big crash, things had gone off the rails a bit. She wasn’t nearly well but she was better.

In late November 2018, she reported:

“My sleep is the best it has been in 25 years and my digestion is close to normal. I no longer feel light-headed when I get up after lying down or when climbing stairs or hills. Clinical signs of improvement include increased blood pressure (was low), normal blood sugar (was low), normal TSH (was very low despite normal amounts of T4 & T3 and no symptoms of hyperthyroidism, now in normal range with no change in thyroid replacement)..I  still have low energy but I feel very relaxed as opposed to feeling stressed as I did in the past.”

Indeed, a hair analysis test done in September showed an improvement in adrenal function, an increase of toxic metals that were being mobilized, and increased levels of calcium and magnesium – all of which were expected as part of the detoxification process.

As time when on, though, a familiar pattern began to assert itself.  The same nutritional rebalancing program which had gone so well for nine months was leaving her more, rather than less, reactive – to the point where she couldn’t take the supplements anymore. In retrospect, she recognized she’d experienced similar symptoms during a more rapid detoxification program. Detoxification is a tricky matter and she had been careful and slow, but later she wondered if she should have stopped the program sooner.

It’s possible, though, Darden was simply once again, have been simply bumping up against her nemesis: the paradoxical inability of her body to tolerate treatments that helped her.

Then she tried a seemingly innocuous treatment – bee venom therapy – which had no effect at first, but which appears to have destabilized her nervous system to the extent that her big bugaboo was back – an inability to sleep.

Something very strange was happening. Instead of her usual low pulse, her pulse was now elevated. Bizarrely, about half an hour after falling asleep she would wake up with her pulse racing and her body agitated instead of relaxed. She’d encountered this bizarre reaction after eating something wrong or after a big day, before but it had always been temporary.

Now, it was happening frequently and was keeping her up for hours. Even eating – which had been a problem in the past but which she was so very careful about – was putting her nervous system into overdrive as well.

Over the last 8 months of her life, Darden became less and less able to sleep. She became so exhausted that she wondered if it would be possible to use anesthesia to induce a coma-like state to get her body to rest.

In the end, she found that everything she tried, no matter how initially positive, eventually resulted in a state of extreme nervous system agitation. This strange problem had been like a demon stalking her. She would open one door, and find relief for a time, only to have it eventually catch up with her.  It was as if her body couldn’t tolerate wellness.  She would have to stop what she was doing and wait for her system to calm down.

Except this time her system wasn’t calming down.

To Sleep

Sleep had always been Darden’s weak spot. She’d worked on getting better sleep for decades. Nobody could figure out what was going on. During one sleep study, she woke up 11 times, and as she did so, her pulse spiked from under 50 BPM (beats per minute) to over 100 BPM.  The sleep doctor had never seen anything like it.

In 2009, she reported that:

“The ability to get a good night’s sleep has been an elusive struggle for me for over 25 years and has required incredible patience and perseverance to cope with.”

Her sleep issues could be dramatic and unremitting:

“My sleep was disturbed by periods of intense heat and sweats that woke me up every night around 2:45 am and lasted several hours. Then the periods of heat increased starting around 11:00 pm and lasted most of the night. By 1993 my health was in a crisis due to lack of sleep.”

Yoga – a calming practice if there ever was one – benefited Darden greatly early on. Physically, it kept her in good shape and, of course, helped mentally and emotionally as well. Her ability to maintain a meditative state through her often night sweat-filled nights proved invaluable, yet even yoga over time proved to be agitating, and she had to stop it.

It was as if she had a governor placed on her system which, as soon as her energy began to increase, caused her sleep to deteriorate. The root cause, she thought, was an agitated nervous system, she tried everything she could to calm it down.

 “All I have been doing for years is trying to find ways to conserve my energy and not get stimulated by foods, drugs, supplements.”

Giving up alcohol, caffeine, sugar, pain relievers and additives in processed food helped. Stimulants, of course, were completely out but so were pharmaceutical pain relievers, sedatives and, unfortunately, sleep drugs. Darden quickly built up a tolerance to Ambien and could not tolerate Trazodone or Doxepin Elixir at all. In 1997, Dr. Jay Goldstein’s prescription for Neurontin (Gabapentin) prescription actually worked – she was able to sleep for the first time in months – but then within a week, her system adjusted again.

Desperate for sleep, she upped the dose for six weeks, and then suffered from a withdrawal (severe depression, nausea and headaches) she called one of the most harrowing experiences of her life.

After she went through a similar situation with Klonopin (short-term sleep relief), followed by a withdrawal, she gave up on sleep drugs, and, relying on a network of friends and family, toughed out what she called a “hellish nine months” where she slept very little, burned up with heat every night and felt suicidal.

Then, she had a surprising breakthrough. A neurobiofeedback therapist taught her how to us a simple technique called “hand warming” which she felt literally saved her life. The technique involved learning how to raise the temperature of one’s hands enough (95 degrees) to trigger a relaxation response in her cardiovascular system. Using hand warming, she was able to go back to sleep after night sweats woke her 5-10 times every night.

The Lifesaver: ME/CFS/FM Patient Finds Simple Way to Get Sleep

She also enhanced her meditative work using alpha-theta brain wave neurobiofeedback, which sent her into a deep state of relaxation. Her depression lifted and her quality of life improved. Her still disrupted sleep, however, kept taking its toll and she was increasingly exhausted and had to cut back on her yoga practice and decreased her personal commitments.

Then in the fall of 2001, at the onset of menopause, she developed fibromyalgia (FM) which obliterated most of the progress she’d made with sleep. She was now able to sleep only 20 minutes at a time, and her functionality declined further.

With any type of sustained exertion now producing pain and injury, she was forced to give up many of the things that she loved including her yoga practice, walking, gardening, and perhaps worst of all, her music.

Still, she kept trying new things and, over time, a number of them helped. Stabilizing her thyroid functioning with a thyroidectomy (and treating Wilson’s Low Body Temperature Syndrome), improving her breathing through Oral Systemic Balance, treating SIBO (small bacterial overgrowth) and using a unique form of neurofeedback called LENS all provided small wins.

LENS or “Low Energy Neurofeedback Systems”, developed by Len Ochs, is believed to reset dysfunctional brain patterns. LENS helped with Darden’s fatigue, permanently raised her salivary cortisol levels to within normal ranges, and allowed her to occasionally experience nights of deep sleep.  Her horrific night sweats dissipated and her sleep improved, but was still usually rocky with multiple (10-15) awakenings a night.

After getting help from LENS, Darden tried NeuroField, a pulsed electromagnetic field therapy, which enhanced her feelings of well-being, emotional stability and energy, but failed to improve her sleep or muscle issues. After an “Energetic Fitness System” machine worked for a time, she bought one, but once again became reactive to it.

Then in 2009 Darden stumbled across cryotherapy. Developed by a Japanese doctor in the 1970’s, whole body cryotherapy, exposes people to extremely cold temperatures (-110 C) for 2-3 minutes. Several FM studies have had positive results and the practice is now regularly used by athletes to further their recoveries.

Darden responded very well – experiencing about a 30% improvement in all her symptoms – and was able to garden for the first time in years. She was encouraged by the fact that her energy levels were not being dramatically increased – something which had resulted in disaster before. She ended up leasing her own cryotherapy chamber, but after 60 sessions, her nervous system agitation reoccurred and she had to stop it.

Another approach designed to improve sleep – the Nikken sleep system (magnets built into a mattress) –  left her with more agitated sleep than ever. A similar reaction occurred to Cranial Electrotherapy Stimulation (CES) which uses clip-on electrodes to the ear.

Acupuncture and natural remedies (magnesium, homeopathic remedies, Chinese herbs, valerian, melatonin, GABA, 5HTP and “natural” progesterone) all tended to follow the same dismal pattern – improvements in sleep at first, followed by a steady diminishment of effects and eventually becoming completely useless, if not counter-productive.

An initially good response to a nutritional supplement formula called MAX GXL, which increased the levels of the major antioxidant in the body – glutathione, left Darden again sleeping well for about five nights, but again, faded over time.

The Gist

  • After an adventurous start to her life – she met her husband, Mike, in Alaska – Darden came down with ME/CFS/FM in 1973
  • She was able get a degree, was a piano teacher, singer and composer and became  a mother.
  • Sleep was a treacherous issue for Darden throughout her illness and her doctors who could not understand her blood pressure surges, night sweats, etc.
  • With her husband Mike providing abundant support Darden was free to try many things and she did. Over the years she tried an amazing assortment of therapies.
  • Some helped for a time but Darden’s system seemed to resist wellness. Almost inevitably anything which increased her energy sooner or left her system agitated with her unable to sleep.  Even gentle things like yoga would eventually produce this symptom.
  • Some of the few things which helped included handwarming – a biofeedback practive, Lens (Low-energy-neurofeedback system), thyroid stabilization, oral systemic balance, SIBO treatment, and breathing exercises
  • Darden tried something called nutritional rebalancing which seemed to be working – she was in better shape than she’d been in years.  As her old pattern (nervous system agitation), however, began to reassert itself – she tried bee venom therapy which appears to have destabilized her nervous system.
  • Now Darden began experiencing dramatic increases in her heart rate that occurred about 30 minutes into her sleep and left her nervous system on edge and agitated.
  • For the last 8 months of her life Darden’s life-long sleep issues worsened.
  • Studies indicate that sleep deprivation such as Darden experienced is associated with an inability to concentrate, memory loss, increased pain sensitivity, sympathetic nervous system activation, immune destabilization, toxin build up in the brain, increased risk of suicide, depression and more.
  • In August of 2019 Darden Burns took her life, leaving behind her husband, Mike and her two daughters.

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Then, she found something called Oral Systemic Balance. OSB is an expensive and time-consuming process, developed by a TMJ dentist named Farrand Robson, which employs oral appliances to help patients breathe better and purportedly restore balance to their autonomic nervous system.

In 2013, using EKG and ultrasounds to guide the process, Oral Systemic Balance treatments successfully altered the position of Darden’s tongue, theoretically putting less stress on the autonomic nervous system. The treatment allowed her to regularly experience 2-3 nights of 3-4 hours of deep sleep, and  resulted in significant improvement in her health.  Breathing exercises developed by “The Optimal Breathing Coach” by Mike White helped as well.

Finding out in 2018 that she had low normal aldosterone levels and hoping to improve her low blood pressure (80 mmHg/40 mmHg lying down), Darden tried a low dose of aldosterone (25 mcg). Aldosterone, remarkably, improved virtually all her symptoms (energy, sleep, muscle recovery and blood pressure) but, after a month, her sleep plummeted again and she had to discontinue it.

Then came an odd success – a simple ginger root supplement (two 550 mg capsules with breakfast and dinner) improved her gut motility and SIBO and helped her sleep. Diamine Oxidase (DAO) (60,000 units or 3 capsules w/meals), an enzyme that breaks down histamine in the gastrointestinal tract, helped her sleep a bit as well.

These were wins which improved her quality of life but often they were small wins: she still spent many nights fruitlessly waiting for sleep to come.

And then came the natural rebalancing effort, the bee venom and the dramatic destabilization of her nervous system – and the horrific decline into the world of little sleep.

The Cost of Poor Sleep

Virtually every part of the body is affected by poor sleep. Studies indicate that Darden probably experienced the following things during the largely sleepless last eight months of her life:

  • Her short-term memory and ability to concentrate tanked quite quickly.
  • Her ability to learn anything new and retain it
  • Her emotional reactivity increased as the fear center in her brain – the amygdala – became hyper-reactive.
  • She probably experienced severe mood swings as her emotional lability increased. Studies indicate that her susceptibility to suicide increased.
  • Her brain’s ability to remove toxins declined.
  • Her fight/flight system became stuck in the “on” position.
  • Her risk of coming down with a variety of diseases and conditions including heart disease, cancer, diabetes, high blood pressure, atherosclerosis and weight gain increased.
  • Her motor skills (i.e. her ability to move) likely declined.
  • Any injuries, strains, etc. took longer to heal.
  • Her cellular energy stores declined.
  • Her sensitivity to pain increased.
  • Her immune system’s ability to fight off pathogens declined as numerous parts of the immune system (T-cells, natural killer cells) took a hit.
  • The pro-inflammatory cytokines associated with increased pain, fatigue, etc. increased – during the day following a night of little sleep.
  • Her risk for coming down with an allergic or autoimmune disease likely increased.

An Outlier?

Darden wondered during the last couple months of her life if she was an outlier.  I believe she was, and she wasn’t. The degree to which her sleep was impacted, her unusual sleep patterns, the heart racing, uncontrolled night sweats, the teeth chattering, the extreme sensitivity to foods, stimulants, and artificial elements all put her on the far edge of sleep impairment in ME/CFS.  Her system was profoundly sensitive to anything that might agitate it, and once agitated, it had a great deal of trouble settling down.

The fact that things which calm most people’s systems down in the end agitated her was fascinating but not unheard of. (I’ve experienced something like that many times.) Her system’s proclivity to adjust to and terminate the effectiveness of the vast majority of initially helpful treatments is not unheard of either.

The fact that her sleep problems seemed to originate from some sort of nervous system agitation seems to me to clearly fit within the broad category of ME/CFS symptoms and sleep study results. While Darden’s problems with sleep and nervous system agitation were unusually stark, they seemed to hearken back to issues that many of us experience in thankfully much milder forms.

Conclusion

“I have been very fortunate to have people in my life who are supportive and understanding and to not have to solely support myself financially.” Darden

In the end, Darden felt the burden of not just hers, but also other people’s illnesses weigh on her. Darden’s attempts to get well were never just about her.  She recognized she was lucky to have the spouse she did and the resources and the support she had. She devoted so much time on her blog Fibro-Friends to rigorously detailing her treatment successes and failures because she wanted to find a way out for herself and others. The fact that, after all this time and so many attempts, she was failing to pave a way for others, weighed on her.

“I feel like I have let so many people down. I wanted a happy ending to my story. Last summer I had a glimpse of feeling well and it was incredible.” Darden

Darden’s death revealed, as if it needed revealing, just how much of a mystery these diseases are.  After an amazingly brief, if you think about it, journey through traditional medicine, she immersed herself in the world of alternative medicine for decades.  Most of the time it didn’t help but at times it helped quite a bit. Still, Darden never came close to resolving her illness, and in the end it was an untested, unvalidated treatment which appears to have triggered her final relapse. What this disease and those who have it clearly need is more and more and more research.

Properly assessed, I believe Darden could have taught us so much about the origins of this mysterious disease. In a more receptive and interested world, researchers might have been knocking on her door to study her.  Instead, she was left travelling the fringes of medicine on her 4-decade long, but ultimately quixotic, quest for wellness.

Until we stayed at her house, I knew Darden mostly through her blogs – some of which were published on Health Rising.  I found out that before she became ill, she was an adventurous young woman who met her future husband on a trek to Alaska!  (This was at a time when it wasn’t easy to get to Alaska). I know she had a wonderful family and very supportive husband. I know she loved animals. I know she reveled in music and loved supporting others in appreciating it.

I will chiefly remember Darden, though, for her unflagging commitment to her wellness and the wellness of others – a commitment which led her to turn over every darn rock she could. She picked herself up from the rubble of the last failed treatment and started over again and again and again. I believe one source of her tenacity was because she was devoted to something bigger than herself – she was on her own personal quest to solve this disease for everyone.

Even ten years ago, her list of things which didn’t work was astonishing. They included:

hyperbaric oxygen therapy (31 sessions!),  relaxin hormone Therapy,  gluten/Cassien free diet, alkaline Water, AtlasProfilax, guaifenesin, acupuncture (Classical Five Element, Japanese & Chinese styles), EMDR, Enhanced External Counterpulsation (EECP) (37 sessions), Nambudripad’s Allergy Elimination Technique (NAET) (1 1/2 year), NeuroModulation Technique (NMT), The Body Restoration Technique (BRT), Feldenkrais training, rolfing, chiropractics, cranial sacral work, Advanced Allergy Therapeutics, anti-candida program, heavy metal detox, neural therapy, bioidentical hormones, sleep drugs,  jaw cavitation surgery, cranial electrotherapy stimulation (CES), magnets, earthing, MRS2000 (pulsed electromagnetic field (PEMF) device), HeartMath, ozone therapy, low dose naltrexone, NanoVi, glycine, quercetin, MTHFR support,  methylation disorders therapy, amethyst biomat, anabolic steroids, CBD oil. One Human Probiotics treatment course involved monthly trips to Boston – and failed.

She was, like all of us, a pioneer, bushwhacking her way through the remote regions of medicine trying to read the signs of the land, making her way by feel at times, and laying down tracks where few have gone before.

The nature of being a pioneer is that they don’t always make it. They take wrong turns. They get lost in the desert, snowbound in the mountains, they succumb to exposure or thirst.  Not making it doesn’t mean they failed, though.  Instead, they often leave behind a trail of courage, creativity, and persistence that inspires us to do better – and finish building those paths through the wilderness.

Darden’s last post on her website in May 2019 featured her on piano singing a song that spoke to the uncertainty of the road she was on, and her  struggle “to keep the faith”, to keep appreciating the beautiful things in life.  (She wrote that the tune was written by Bruce Cockburn, and that she borrowed a couple of lines from his song “Pacing the Cage”. The meaning of her song, though, was entirely different than his .)

 

Sunset is a weeping angel

Spreading out across the sky

No matter how I see the beauty

The tears and sadness are close by

Sometimes I feel that I’ve lived too long

Days drip slowly by

I set myself to keeping the faith

I’ve proven who I am so many times

The magnetic strip’s worn thin

And each time I meet a challenge

I pull up from some strength within

Hours chatter in high places

Stir up eddies of despair

I set myself to keeping the faith

Sometimes the best map will not guide you

You can’t see what’s round the bend

Sometimes the road leads through dark places

Sometimes the darkness has no end

My aching body is so tired

I wait patiently for rest

And set myself to keeping the faith

I never knew sleep could be trying

I wonder when the pain will end

I live by hope and faith and courage

And blessed comfort found in friends

Its as if my life was written

In the shadows of the day

I set myself to keeping the faith

The shining faces of my children

The melodies of sweet refrains

The beauty of the singing river

The sky, the moon, a tree, a friend

These are the grace filled moments

On which I can depend

And set myself to keeping the faith

 

Pacific Dawn by John Adams – from Darden’s last post

We can’t predict the future. We may reach the promised land or we may not. The one thing we do have control over, though, is our commitment to keep blazing trails.

I mourn Darden’s passing and how agonizing it must have been, but I will remember her not as a victim but as the courageous and determined woman she was.

  • Check out a beautiful remembrance of Darden from one of her  Darden’s daughters, Amelia Burns Stewart  (on the Tribute Wall page), where Darden’s obituary can also be found.
  • Next up – In remembrance of Darden – Health Rising’s Sleep Series begins. See Pt I below.

Sleep Pt. I: Why We Sleep (and What Happens When We Don’t)

 

 

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