Besame’s kosability post last month on finding effective help outside of the purview of standard western medicine hit a whole tangle of nerves for me. as she points out, if standard western med works well for you, you may well look askance at those weird and perhaps untested and risky alternatives that some of us plunge into with what seems like an uncritical naïveté.
i now think that this skeptical stance towards alternatives is an unexamined luxury, sort of like my increasing awareness of my white privilege; we may not stop to scrutinize or recognize this sort of thing until we’re forced into reexamining it by new circumstances.
many of us are driven to alternatives when western med fails us so completely that it becomes a matter of (not to be overly dramatic or anything) life or death—or, at the very least, a life worth living versus descent into despairing disability. yet from the outside, it can look like cultivation of a baseless lunatic hope and i’ve been harangued for foolhardiness.
so, fwiw, here is an account of how i’ve explored alternative treatments and found far more effective treatment for my seizure disorder than prescription medication…
KosAbility is a volunteer diarist community meeting the last Sunday of each month at 4pm PT/7pm ET. We embrace people living with disabilities, who love someone with a disability, or who want to know more about the issues. Our use of "disability" includes temporary as well as permanent health/medical conditions, and small, gnawing problems as well as major, life-threatening ones. Our use of "love someone" extends to cherished members of other species. Our discussions are open threads in the context of this community. Feel free to comment on the diary topic, ask questions of the diarist or generally to everyone, share something you've learned, tell bad jokes, post photos, or rage about your situation. If you are interested in contributing a diary, contact Besame, wilderness voice, Steven Park, or CathyM.
my parents would have been quick to tell you that one of my (many) great faults was my stubbornness. i was a scrawny undersized kid and always had my elbows out; would not back down to bullies and consequently was regularly flattened on the school yard and in my home.
i, on the other hand, am quick to tell you that stubbornness is one of my greatest assets although now i prefer to think of it as tenacity. at times, yes, i continue to hammer at something from which it would be better to walk away but i think this is the largest single piece of my resilience.
i rarely have to face bullies anymore but i do have to come back over and over to scrutinize every part of my experience and try to see the patterns and connections, stare down my liabilities, and suss out and face my misconceptions and biases, recalibrate and carry on.
two years ago i wrote a kos post on parts of my baffling medical journey up to that point, focusing on the liability of being ill-while-female in this country. this time i want to focus on one recent twist: i have not had a seizure since december 12, 2015, coming up on a year.
so, here’s the back story. it begins with frequent life-threatening seizures but has come to this place where a scan at mayo clinic a month ago showed ‘no evidence of epileptic activity although there is still some slowing over the temporal lobes.’ i’ll try as best i can to be concise with a complicated story but also include enough detail to be useful to people like me who have an insatiable need to know specifics.
in May of 2003, i began to pass out cold. i was 48, turned 49 some weeks later and the cardiologist who examined me was dismissive: ‘you’re female and under 50; it’s not cardiac.’ well, it was cardiac; i was flatlining. three months later, after 20 daytime episodes (and unknown numbers of nocturnal ones) i was finally diagnosed with sinus node dysfunction and had a pacemaker implanted which ran consistently between 28-32% of the time, meaning that my pulse was bradying down below normal function.
the bizarre episodes continued however, often several in a week. i no longer passed out totally but would become paralyzed for several minutes and then be toast for the rest of the day. my speech was impacted; after an episode i would be inarticulate for hours and speaking, studying, and writing were impossible. i completely lost the languages i’d studied so hard to gain; even my birth language, english, was often a stretch and i realized that my english vocabulary was shrinking noticeably even between episodes.
finally, 7 years later, my baffled family doc insisted that i go to mayo clinic as we’d more than exhausted boise’s limited medical resources. in july, 2010, i was diagnosed with ictal syncope—a rare seizure disorder that causes bradycardia and syncope (slowing and stopping the heart).
the doc prescribed tegretol which gave me stevens-johnson syndrome, a really ugly and frequently fatal necrotic skin disease (you really don’t want to look at the pictures. i only had a couple of external blisters; it mainly attacked my mucosal membranes).
i couldn’t function on depakote (valproic acid), lamictal (lamotrigine), keppra (levetiracetam), topamax (topiramate)…. and i’ve been on several more seizure meds as well. they were drugs from hell, all of them, destroying the village to save it. i couldn’t talk without long pauses between words, couldn’t think, would sit and stare not even able to read and understand much of the time. i went from a size 4 to a size 12. keppra also made me so staggering drunk i was still walking into walls 24 hours after the small initial dose. fatigue was endless. my 3 month medical leave stretched out to 6, 9, 12 months before i finally resigned. and i continued having seizures, usually with paralysis.
finally, my epileptologist suggested i try vimpat (lacosamide). at that point it was not usually prescribed as a standalone seizure med but for me it worked—i got my mind back; at least i could pass for short periods of time as somewhat mentally functional. (there were a raft of other issues as well but i’m sticking with seizures today ;)
my pacer continued to run 28-32% of the time which we now knew was actually indicative of seizure activity suppressing heart function even when it was below my threshold of awareness. on the vimpat, my seizures dropped in number and usually severity but did not stop; i still had two to three a month. occasionally the aura would progress into creepy horrible paralysis although that only happened a couple of times a year once i was fully titrated up on the vimpat.
so here is the beginning of my efforts to find alternatives: as my mind began to clear on the vimpat i started an intense search for what i could do to wrest some sense of health and control back into my hijacked life. a wide variety of things were helpful to varying degrees, among them reiki, acupuncture, muscle testing, supplements, craniosacral therapy, etc., but here i want to highlight what in retrospect seems to me to have been crucial in restoring as much general health as has been possible and specifically in seizure cessation.
grounding activities:
during the year of medical leave, my epileptologist insisted that i start taking antidepressants. at first i refused—i’ve lived with suicidal ideation my whole life stemming from childhood sexual abuse and have developed a robust system for noticing and responding when that kicks up to a worrying level. he wouldn’t let off; stressed that i was at serious risk. in doing my own research i found a suicide tree that when i plugged in my issues told me that i was 28 times more likely to commit suicide than a woman my age without those issues so i finally took his month’s worth of free samples.
i also immediately began to do what has been helpful in mitigating depression in the past, including creative work. i didn’t have the strength or energy to throw pots on my wheel, but i could sit in my sunny bay window with marble-sized bits of clay and make tiny little pinch pots. i made hundreds of them.
we had a pair of delightfully unabashed gay squirrels (yes, really) in our fenced yard that winter and spring and watching them cavort and carry on while i worked clay was as therapeutic as the creative work. i don’t think i filled the prescription after the freebies ran out; i didn’t need to.
another bit of literally ‘grounding’ activity was tending houseplants and getting into dirt on a regular basis. we didn’t have a garden space then but we had a huge flower bed which tiny bit by tiny bit i filled with perennials, herbs and annuals. when brain fog took over the world i discovered that simply sitting on grass or on rocks or putting my bare feet on the soil would help my mind clear.
mindfulness and meditation, while not ‘ground’ as in clay or dirt, have also been significant ways for me to still that center spot. i also look for wisdom stories and sayings from around the globe to reflect on over time, often returning to gaze at them again and again. and humor! when all else fails and the world stays bleak, i go to www.damnyouautocorrect.com and laugh like a loon.
i would also include animals in this category. i am a much better and happier—thus healthier—person when i have dogs in my life; their unconditional positive regard is an anchor.
diet:
i ran across references to the ketogenic diet as treatment for kids with med-resistent refractory seizures. some kids are cured; after several years on this absolutely rigid diet, their seizures are gone and do not return. johns hopkins and other medical centers were exploring this but i couldn’t find anything at that point on using it for adults. (i believe that now johns hopkins offers keto clinics for adults, too.)
the full-fledged ketogenic diet is about 90% fat and demands a nearly gram by gram finesse and oversight to every mouthful which was clearly beyond my skills. i decided to experiment with a milder form and spent a month moving towards the introductory level of the atkins diet which is mildly ketogenic, cutting out caffeine and sugar and getting my pantry ready for a drastic change in how i cooked.
at the beginning of december 2011, i cut carbs to 20 grams per day or less and used ketostix to check my urine, fasting until i was back into mild ketosis whenever i was out. i did not have any seizures at all for several months. at the end of january i had my regularly scheduled pacer check and discovered that my pacer use had dropped to 3% of the time—down from the consistent 28-32% for the 8 years i’d had it!
i talked with my epileptologist and told him about the diet. he shrugged and said confidently, ‘a ketogenic diet won’t help your kind of seizures.’
i asked, ‘well, how do you account for this sudden complete stop in seizures—and the precipitous drop in seizure activity as measured by the pacer usage?’ he couldn’t….but he was sure the change was coincidental or a placebo effect. i assured him i was entirely happy with useful placebo effects and to please leave me my illusions. he laughed and agreed; he’s one of the few docs that i found in boise who would give me the respect of an argument.
in february of 2012, we left boise and moved to arusha, tanzania. both of us have undergrad degrees in international agricultural development although we’d not worked in that field since we’d left zambia in ’89.
it was clear that we needed a major change; sir os was in an intensely demanding yet dead-end job with a horrific boss and while i was better i was still a shadow of my former self. yet, apart from the weight gain, i looked like my old self and my friends and community could not see the internal changes from brain damage and drug side effects.
i felt as though i was drowning a good bit of the time, trying to meet the expectations of these dear people yet utterly unable to be who they thought i should—would—still be. awkwardly put, perhaps, but it was terribly painful.
we applied for a volunteer position in admin for the same relief and development ngo we had been with in zambia and were accepted for a 5-year term. it was a one full time equivalent position and that seemed manageable. two months of intensive swahili study did wonders in rewiring my broca’s area (one of the major speech centers in our brains; my seizure locus was very near to it explaining why speech had been such an issue). i did not become proficient in swahili but regained much of my facility with english.
i did eventually begin having an occasional break-through seizure but only when i fell entirely out of ketosis and still not usually more than once a month. i found the diet a pain in the rear, especially in arusha where my options were somewhat limited. and, gosh, i was living in a land where the elevation range enables both tropical and temperate-climate fruit—mangos, papayas, finger bananas, melons, guavas, pineapples, grapes, berries, apples, citrus—and it was all off limits. i did eat a ton of fresh coconut, great source of medium-chain triglycerides, exceptionally helpful for staying in ketosis.
a really happy time was getting giardia and being sick enough that my ketostix turned dark purple and i could safely sink my face into one of those incomparable mangos! ecstasy dripping off chin and elbows into the sink!
sadly, we ended up having to come back to the us after 2 1/2 years due to some of my other health issues. i stayed on the introductory level of the atkins diet for a total of 3 full years and then felt clear that the benefits were no longer a balance for the negatives. i was always hungry, usually queasy, and i think it made the arthritis in my hands worse. so, i slowly added more foods back but happily, my pacer activity level remained at 2-3% and i didn’t have any increase in the intensity or number of seizures, running about one per 4-6 weeks on average.
tapping (eft):
i began this therapy more in response to the chronic pain and muscle spasms from mitochondrial myopathy but i think it has had a very broad and beneficial effect on my wellbeing in general.
a friend sent me a copy of nick ortner’s book, the tapping solution for pain relief. she had recommended tapping years ago and i had tried it perfunctorily and blown it off as probably bogus. now, however, need opened my window of willingness and i gave it my best shot, working systematically through the exercises.
and yes, it did significantly reduce my chronic pain; i was able to quit taking the prescriptions for a muscle relaxant, an anti-inflammatory, and drastically reduce my use of the synthetic opioid i was taking. i haven’t been on prednisone since i began tapping.
this book walked me painfully and cathartically through my medical and personal history, helping to identify the tender sore spots of anger, rage, and betrayal that have occupied knots of tension in my body beginning in toddlerhood when the sexual abuse began. while i continued to have about one seizure every 4-6 weeks during the months i worked through the exercises in this book, i think tapping helped to set the stage for the next phase.
infrared saunas:
i have an older brother who is an utterly amazing human being. among other things, he is a medical intuitive and he has been my advocate and cheerleader for years. when he suggests something i take him seriously as he’s been right about effective treatments far oftener than my docs have. so when he said that he thought that i needed to detox (i’ve had major exposure to pesticides and other toxins beginning in childhood) and that an infrared sauna was the gentlest and safest way for me to do this, i was willing.
he builds saunas with both far and near infrared lights and gave me one of his prototypes; i started spending between 45-60 minutes a day in it, sweating profusely and listening to pandora and reading. it had some other benefits, too; eliminated the persistent SAD issues i’ve always had in northern hemisphere winters, and it was incredibly soothing to my muscles and joints. it is also beneficial for mitochondrial activity; mine is abysmal as i have adult onset mitochondrial myopathy. and….no seizures.
i began the saunas just after christmas last year and have not had any seizures since mid december. bro thought that after a total of 70 sauna hours i’d feel a difference; i really did, in overall vitality and pain relief as well as seizure cessation.
there is one more big piece to this enigma.
cbd oil:
last year i paid 240 dollars for a 3 month supply of vimpat. beginning last january the best rate i could get was 625 dollars…and the 2nd time i filled that prescription i fell into the medicare doughnut hole so i paid over 900 bucks for that one. succeeding prescriptions would have been well over 1K for the rest of the year. this is an impossible amount for me on my disability income.
the good thing is that it really focused my mind in looking for more alternatives. i’d been reading about the anti-seizure effect of high cbd (a non psychoactive component) marijuana for several years. where there is some indication that high thc (psychoactive) strains can actually trigger seizures, there is very clear anecdotal and increasing clinical evidence for the seizure suppression effects of the non psychoactive cbd strains. sadly, current legislation has not allowed much quality research although this has been changing. we’ll see how it goes in this coming admin.
i applied for and got a michigan medical marijuana card but found smoking it so distasteful that i now use it only occasionally for pain relief for my other issues. then i discovered that hemp-based cbd oil is available on the internet and is legal in all 50 states as it doesn’t have any thc. i began to use it cautiously and had no bad reaction so in march i slowly began to titrate myself off the vimpat while titrating up on charlotte’s web cbd oil. i am very cautious; that process took me from mid march to mid july. i would maintain at the same level for several weeks if i was stressed or felt seizure-prone before decreasing vimpat further.
this may seem bizarre but i’ve found this bit of self-observation helpful in determining whether or not i’m in a ‘seizure-prone phase’: when i began seizing in ‘03, i also began having spectacular phosphene displays—the colours and patterns one sees with eyes shut when light pressure is applied to eyeballs, or when one is meditating. this was like that only different in timing and intensity. sometimes it was almost like a migraine aura in that i could see the colours even when my eyes were open.
eventually i realized that these displays often—not always—occurred prior to a seizure, sometimes showing up episodically anywhere from a day or two before or right up till the seizure blew through and often following it. my epileptologist was reluctant to call this an aura since it seemed so random.
yet, since the intensive weeks of infrared saunas and the introduction of cbd oil i rarely experience even a small light show. when it happens, i take extra cbd, rest, and make sure that i don’t put extra stress on myself. and still….no seizures, not even a blip of the aura i always get just prior to the bigger ones. (the ‘blips’ or auras are actually simple partial seizures themselves. when consciousness is affected and paralysis happens, they are complex partial seizures, ‘partial’ because only one brain hemisphere is affected, not both sides as in tonic-clonic seizures.)
tentative conclusions:
in august, i finally found a nurse practitioner in this underserved rural area of michigan who was willing to take me on as a patient. she was utterly horrified to look through my medical files, see my diagnoses, and discover that i’d taken myself off my seizure med—when i have a life-threatening form of seizure disorder! (while the pacer has effectively kept me alive throughout, my docs felt that eventually i would have The Big One, a seizure that would take me out.) she made it clear that this was considered noncompliance and she would only continue to work with me if i had a whole battery of tests and followed through on my planned trip to mayo clinic.
the tests included querying my pacer which i’d not been able to have done since i left boise. i was stunned and ecstatic to discover that it has not activated at all, for months! it’s fully functional, just not needed. (sir os’ first response was ‘good! we can sell it on ebay!’)
i did go to mayo clinic, twice this fall, and dr. shin, the neurologist who first diagnosed me with ictal syncope back in 2010 ordered a sleep-deprived eeg. he, too, was visibly horrified when we first met this time and i told him exactly what i’d done; he refrained from scolding although it appeared to me that he was biting his tongue.
after the eeg, however, he seemed almost ebullient saying that while mayo doesn’t normally recommend using cbd oil as a standalone treatment for seizures, he doesn’t like to argue with success. as i still have some abnormal slowing over my temporal lobes i can’t pretend to be confident that i’m fully ‘cured’ but at this point there is no sign of epileptic activity. (dr. shin did recommend that i take advantage of high cbd medical marijuana rather than internet hemp oil as the purity verification system is much better in the state licensing programs.)
mayo is also one of the few medical centers that offers a pacemaker protocol for MRIs. i spent a long morning freezing in that scanner and then watched with fascination as dr. shin ran through the scans on his monitor. my brain! in vivid detail. odd feeling.
the exciting piece of info from all those mri slices is that there is no longer any sign of a lesion near my broca’s area, yet another extremely hopeful confirmation that this has been a good path.
i cannot tell you how grateful i am to be slowly disentangling from pharmaceuticals. while there is hurricane-force crap slamming us all in the face from every direction right now, the shafting of sick, vulnerable people by ethically sick greed-diseased big pharma arouses my hurricane-force rage about as much as anything. i’m just incredibly fortunate that i’m wiggling free, but many more people will continue to die from not being able to afford the drugs their lives are dependent upon.
i don’t pretend to think that there are ‘natural’ alternatives to every drug or for every condition, or that this lengthy process that has worked for me will work seamlessly for anyone else—and i don’t assume that the iatrogenic effects from my drugs and treatment will carry over to others, either. tegretol works very well for many people with seizure disorders; the fact that it nearly killed me is relevant, well, certainly to me! but no reason for others to avoid it if it can help them.
i ran across a quote today from one of my contemporary heroes, wendell berry, that strikes me as apt summary underlying all i’ve said:
It may be that when we no longer know which way to go we have come to our real journey. The mind that is not baffled is not employed. The impeded stream is the one that sings.
thanks to all of you who made it through this tome! so much for being concise.