The Cure is You: Dealing with Chronic Illness Part 5
Sunday, February 15, 2015 12:58
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Growing up with a Secret
Was I always epileptic? I was in grade school when began getting what my teachers called “dizzy spells.” Only after I had fainted at school, actually fell to the ground at recess, did I go to the doctors. I may have lost conciousness because I remember watching the kids play jump rope one second and the next I was lying on my side, my face pressed into the asphalt, watching the kids pause while the aids ran up to me. I saw them, but I couldn’t sit or stand up. Naturally, they thought I was joking around and they yanked me to my feet, where I hung deadweight for what seemed an eternity, unable to speak, while the bullies razzed me and the adults shook me. Eventually someone somewhere realized this wasn’t a prank and possibly was a serious situation that required me being brought to the nurse.
Often I remember going to the nurse with the usual childhood complaint of stomach pain. It happened so often that my mother stopped the school lunch program for a time, but the stomach pain continued. But, I also remember after experiencing these bouts of stomach pain, I often became so sleepy that I put my head down in the nurse’s office and went to sleep while she was pressing me to go back to class. Whenever this happened, the office called my mother to come pick me up from school. Of course, I was shaken awake by whatever adult was nearest to hand and ushered into The Office where I would doze and wait for mom. I remember walking home with her– this was in the days when she didn’t drive and she walked to the school to pick me up– and feeling like my legs were leaden…. or I merely have a memory of her arriving at school and then a cut to me waking up on the couch at home.
I even remember the most embarrassing moment, when I had one of my “episodes” and blanked out during the practice for a spelling bee in the first grade. My bitch of a teacher, Mrs. White, had asked me to spell (of all things) embarrassment. I kid you not. I totally blanked. Not just because of the word or because, as my mother and I thought, I was afraid of speaking in public. I remember this feeling of being turned off, sort of like C3P0 shutting down. ] Then, when I came to, all the kids were flipping out because I had peed all over myself. That was the one time I thought a teacher was going to hit me. I don’t think I spoke in class for years afterwards and certainly did not stand in front of a class again until I was well into high school.
Ultimately, the doctors found nothing at all wrong with me. Initially, they diagnosed me with diabetes, but that was retracted after the test was repeated with clean results. This was the late 1970s and while a CT scan was available, neither my parents nor my doctors thought it was necessary for me. As I hear the story told, when I was only a few years old, my older brother (a year older than me), began having fainting spells as well. This was before my own and his were ultimately blamed on our 2 cats. My brother was taken for a CT scan, an ordeal in the mid 1970s and apparently after the cats were given away– and after we moved– my brother’s spells stopped. I don’t remember my own fainting spells repeating much past a certain age either. I do remember having other episodes while in public school, including sitting in home-room watching my right arm twitch. The kid sitting next to me asked why my arm was shaking. I made believe I was doing it on purpose, but I couldn’t make it stop.
I have scattered memories of going blank or zoning out at times that were strange: at a water fountain, at a bathroom sink, on the cafeteria line in high school, while I was watching my science teacher demonstrate an experiment. It happened so much when I was young that my teachers actually insisted that I had a hearing impairment. I remember it happening while I was climbing on a jungle gym in the school yard. My mother was called down to school, not just because the teacher insisted I was deaf, but because I fell so badly that my knees were scraped from my thighs to my shins.
Sometimes I did ignore them, but there were times when I seemed to be removed from the space-time continuum and found that when I came back, I was actually missing time, that whole chunks of a lesson or lecture had gone by. When I was a teenager this happened so much, particularly at night, that I started to wonder if I was being abducted by aliens. When I was in grade school, it happened enough and was combined with a slight speech impediment that I’m sure my teachers thought I was mentally challenged. I remember a brilliant argument my mother had with my 3rd grade teacher towards the end of the school year. My mother was certainly my advocate and when she found out that my teachers were sending me to “resource room,” she told them in no uncertain terms that my faculties were probably better than theirs.
In later years, epilepsy wasn’t a diagnosis, but stroke was. The first time stroke was mentioned, my health insurance refused to pay for a CT scan and certainly refused an MRI. I was 19 and had experienced my first migraine headache. But it lasted a full 7 days. It started with a brilliant bout of depression, followed by me seeing shades of red whenever I looked at something– what the doctor later described as a halo or aura. Then a pain that was so horrible, I could taste it all metallic and then my face went numb. We couldn’t afford a CT scan without insurance and my doctor tried fighting the HIP because he was concerned that either I had had a stroke or possibly a brain tumor. Blood tests seemed to clear me and then the man himself just dropped off the map. He left the practice to be replaced by a woman who cried when you asked her questions. She diagnosed me with migraines and sniffled when I asked if there were any other possible causes. At that point, my health was a roller coaster and while I don’t remember many of the zoning out or what my latest neurologist termed absence seizures, I do remember having facial tics and spasms centralized in my abdomen or one side of my body. I also recall feeling very tired after these episodes to the point that one doctor diagnosed me with chronic fatigue syndrome– or possibly lupus. But blood tests, once again, were clean.
Then in 2008, a scant few weeks after I started working as an adjunct at the local college, I was diagnosed with having had a TIA (Transient Ischematic Attack) or a mini-stroke.
I had been watching the Obama interview on 60 Minuteswhile folding laundry on an ironing board. I recall my body almost throwing itself forward, over the ironing board. I couldn’t move, couldn’t speak, and had to use all my strength to blink and breathe. My face was turned to see the time and it just ticked away, from 7:22 to almost 7:40. This is something I vividly recall but my past neurologists doubted completely, telling me it was impossible to have had a stroke and remember the time. I doubt any of them had ever had a stroke, or a seizure. It took me another 10 minutes to turn my body toward where I remembered my cell phone had been. It took me more than 20 minutes to coordinate my arm with my hand to reach the phone, and since it was a blasted flip-phone, coordinate my hand to open it. Now what? I had the phone open but I didn’t know what to do with it. I honestly can’t tell you if I called my husband at work, but then I was speaking to him and he was asking me if I had been drinking. I remember the damned digital readout on the cable box, but I don’t remember myself speaking to my husband. I do remember him telling me to go lie down and he’d see me in the morning. Then my mind really gets holes, whole chunks are just gone and I have an incomplete jig-saw puzzle that includes the phone falling out of my hand, me sliding to the floor, me suddenly in the hallway on my ass, me in my office standing on legs that wouldn’t hold me up, me with an ornamental cane in my hand, and me at various points on the floor throughout my apartment. Once I was on my back in my bedroom, my head pounding, being unable to get up and into bed. Eventually I got into bed because my husband found me there when he came home that morning. But, we immediately went to the hospital when he realized I hadn’t been drinking and still couldn’t stand up. The hospital ER staff was prepared to send me home as a junkie (because I complained of pain in my head) suffering from multiple sclerosis (because my right side wasn’t working properly). Had I told them about seeing the dead people watching from the corners of the room, I would have gone to the psych ward. Only when my husband became loud, demanding to speak to someone other than an intern, were we faced with a physician that thought my symptoms looked like a serious neurological issue. I spent the next 3 days not finding out much more than those letters on my release forms: T.I.A.
That incident, my latest neurologist believes may have been a grand mal or tonic-clonic seizure. I’m not sure because of the numbness on one side of my body– a slight difference in sensation that has never fully come back to this day and the sheer duration of the episode, which was several hours. While I had an EEG, it came back “within normal parameters” but I also doubt the efficacy of the test because I was tested while in a hospital room shared with a woman who was screaming herself hoarse. The amiable technician from the Ukraine conducting the EEG tried to get my mind off the screaming by telling me all about his College-bound daughter. When I discussed this test with a neurologist some time later, he told me my brain was too “busy” to give accurate readings. I have no idea wtf he meant by that, but he was also someone who believed I was too young to have a TIA (even though my family has a history of stroke) and that my back pain was psychosomatic (despite him having evidence of ruptured discs and spinal cysts in the MRI he ordered, which he never told me about, which I learned about years later from my current doctor when he compared a new MRI to that specific one).
After reading about all the myriad kinds of epilepsy, after speaking with a neurologist specializing in seizures, I realize that all these symptoms, even the childhood stomach pain, were typical of a seizure disorder. Certainly that “TIA” could have been a tonic-clonic seizure, but I’ll honestly never know. The other symptoms that I had always been prone to, chronic pain, disrupted sleep, depression, and, in later years, joint issues, could all stem from epilepsy. I’m connecting my joint issues because my series of falls from my seizures all resulted in joint and spine injuries. I’ve taken falls throughout my life– and not because I tripped over something. I remember falling because it felt like suddenly my legs wouldn’t hold me up or because they seemed to lock in place and I just went down. I started having falls while in grade school and they continued off an on my whole life. I never fell so badly that I broke something. Only once did I fall and hit my head badly enough to concuss, which happened a handful of years before the TIA (or grand mal,) and that was blamed on an asthma medication I was taking at the time.
Course of action
As I said, I’ve tried finding out “what was wrong with me” for years, decades even, well before epilepsy was on the radar. My overall symptoms were all centered around pain and fatigue. I began taking supplements and herbal remedies years ago, to treat symptoms because I had no information on causes. Some supplements helped, others didn’t; some caused new symptoms, others made me feel worse. So, I took the time to make a comprehensive list of all my symptoms the summer before before the TIA, but my doctor ignored it utterly. At the time, I was concerned I had multiple sclerosis. I had pages of notes and was able to pinpoint that in the summer of 2008, I had had two possibly three similar episodes to what was later called the TIA, but none as severe; all resulted in me falling to the ground. I was under horribly stress, having been unemployed with my soon-to-be-retiring mother living with my husband and I in our tiny apartment. We were newly weds at the time, so draw your own conclusions. My doctor poo-pooed away the idea of anything serious. According to him, I was too young for MS and he handed me a script for Cymbalta– which I told you about before. This was the last office visit before my TIA. I had already made up my mind to find a new doctor, but at the time of the “stroke” I hadn’t yet done so.
The Cymbalta episode only compounded the fact that this dude refused to visit me in the hospital. He did send an irate, morbidly obese doctor who (as I argued with him over the efficacy of having an MRI before the spinal tap he was prescribing) had his own cataleptic fit which caused him to almost fall full body on me in my hospital bed. My current GP, who has to be the most knowledgeable of all doctors I’ve ever met, and the most understanding of his patients was the first person, after years of tests and discussions with him about my symptoms, who mentioned seizures and pushed me to see an epilepsy specialist.
But when I had the so-called “mini-stroke” I had just started working again. I was adjuncting at the local college, part-time, which is all adjuncts ever are. In the months after the “stroke” I began developing urinary issues, not incontinence but I came close several times. My new doctor sent me to specialists, a fibroid was discovered, and treated but then I began vision episodes that initially were chalked up to a faulty overhead light that kept blinking. It was as though I wasn’t wearing my glasses. Well that’s not entirely true. It was like something spread from the right side of my face towards my left, affecting my vision first in one eye and then the other, but then it spread down my face and inside my head, causing me to lose words, causing me to stumble and grab onto the podium, causing me to drop the chalk if I was in the middle of writing on the board. What always followed was a quick brain fart around what I was saying, a brilliant pain in my head at the back of my eyes, and getting what I would call the narcoleptic nods. It didn’t matter where I was or who I was speaking to, I would involuntarily nod off– for anywhere from 10 seconds to 30 minutes. It was the Spring term, so I was able to blame it on allergy meds– which I wasn’t taking– or a migraine. Before the nods took hold, I was ablet to extricate myself from the class, ended class early, or, only once, I was able to give an impromptu quiz because class had just started, and I was able to sit down with my hand over my eyes until the nods passed.
I had only just begun working again, after a period of almost 2 years being unemployed: I could not lose this job. I learned to “deal” with these episodes, but I knew something was wrong, especially when I fell getting on the bus, and fell another time while crossing the street. Both times I was very lucky, but I needed a reason these episodes were happening– so an MRI of the brain was done again, and again, and again– over the space of a few years– all coming up clean. The single repeating factor in these episodes, even before epilepsy was determined to be the cause, was sleep– or lack thereof. I didn’t realize it immediately until looking back, Monday-morning-quarterbacking the episodes.
As I noted in a previous installment (part 2), I began trying to figure out if my “episodes” shared anything, if they had a trigger. I started analyzing all my habits, my food intake, how much water I drank, my alcohol consumption, my sleep (or lack thereof), and my supplements. These episodes were seizures, but I was still undiagnosed and so uneducated about epilepsy, so the idea of being epileptic never crossed my mind.
I found that on days I had one of these episodes, which is what I began calling them for lack of a better term, I had had less than 7 hours of sleep the night before. There were other triggers, alcohol and junk food, that sometimes might have had a factor in the severity or repetition of the episode in the course of one 24-hour period, but whenever I had and have even a few minutes less than 7 hours of sleep, seizures result. So my first course was to start researching supplements to help me gain restful sleep.
In terms of the vision, I was diagnosed with “ocular migraines.” It didn’t matter that I told the doctor that it happened ultimately in both eyes. He told me the important thing was it happened first in one then the other and that since I was already prone to migraines, that was the issue here, and he almost physically shunted me out of his office since there was a line of people with less complex issues, people who didn’t ask as many questions. That diagnosis was utter bunk. So, I started looking at supplements, and whole foods, to promote eye health.
Because I was also at the time trying to find a source for my chronic pain, I started looking at supplements and tea blends to help me deal with pain. Until only more recently, after my diagnosis and after crafting my own tea blends for my husband and my father, have I started crafting tea blends to help me with my own health issues. Granted, I don’t take them every day. I should but some days I forget and others I don’t feel like fiddling with loose tea. I’ve also, in recent months, discovered other herbs that have been recommended (by herbalists like Rosemary Gladstar) specifically for epilepsy and seizures. Since incorporating those in a more structured supplement regimen, I have seen a reduction in the severity of my seizures and I’ve also been able to eliminate seizures from happening during the day while I’m at work. I’ve been able to gain control over the seizures and I also don’t have them when I’m doing things like cooking, eating, crossing the street, or pouring tea.
Now my seizures, when I do have them, happen at home, or on really stressful, long days, in the car on the way home from work, or at the little Vietnamese restaurant we sometimes frequent near to where I work. Since my diagnosis, my husband and I now have a car, so I no longer commute on public transit. It’s not that I can’t. But when epilepsy was found to be the cause of my falls, and not a spasmodic lack of coordination or cosmic phantoms, since I had already too many episodes of falling my husband is more fearful. And, of course, I am not the one driving. At 40, I still don’t have a drivers license and after the diagnosis of epilepsy, I probably will never have one. Law aside, I am terrified of the idea of having even a small episode behind the wheel of a moving vehicle. The other night I had a little seizure and wound up screwing myself up into a ball while bizarrely trying to shut off the television with my cell phone. The idea of being disconnected like that while driving does actually give me nightmares.
The other thing that radically affects my seizures, the one thing I haven’t yet been able to control– or have only just started trying to control– is hormones. Since my diagnosis of epilepsy is still new– it will only be 2 years this coming May– I am as I’ve said still learning. While I was able to pinpoint a major trigger, sleep deprivation, I didn’t actually write down my seizures or look at the calendar to literally mark when I had them. Something I am trying to change by just having started a seizure diary, literally at the beginning of this month.
Most seizure diaries I’ve seen online don’t give enough space for detail.
So, I simply grabbed a marble notebook and started jotting down information with dates and times. At the start of the journal, sit with your doctor/health care provider to determine the kind of information you need in the diary. Alternatively, you can first categorize your epilepsy, the types of seizures you experience, and your medications or supplements. I noted on the first page that I’ve been diagnosed with Partial Onset Seizures or Absence Seizures. I listed my supplements and began the diary when I had my last bad seizure coupled with a fall. I decided to note some unusual mood swings the week before as a possible precursor to the episode. I checked the calendar and this mood thing happens to fall smack in the middle of my monthly cycle.
Which leads to another possible monkey wrench in the whole epilepsy management thing. Hormones. Women experience epilepsy differently than men do, and many (if not all) allopathic epilepsy treatments have been formulated with male patients in mind. The same is true for most chronic illness. The first studies were done on women and heart disease only in the 1990s and even though some doctors (namely women like Dr. Christiane Northrup) suspected cardiovascular disease affected women differently than men (because of firsthand observations of patients), the research data didn’t exist even a scant few years ago. I remember being given an acne lecture by a dermatologist, again one of those wonderful doctors who disappeared seemingly overnight at my local HIP center. He said that all the medications on the market for acne were designed with testosterone in mind and adolescent boys in mind. Only in recent years has Western Medicine realized that men and women really are different anatomically speaking.
I became suspicious about a connection between hormones and seizures maybe 3 months ago. Since I underwent a uterine embolization (UFE) for uterine fibroids several years ago, I have started the long road to perio-menopause. I know even without a UFE my mother began perio-menopause when she was in her early 40s. I feel my hormones shifting, even though my blood tests still say my hormones are in that limbo “normal range.” After having been religious with my supplements and my teas, I had a particularly bad seizure, bordering on tonic-clonic, ultimately lasting for more than 40 minutes. It was like an earthquake with aftershocks and left me feeling like I had been beaten up, run over, and intoxicated. I had clenched my right leg and arm so tightly I thought I broke something from the pain I felt at unclenching, after the seizure. It was more than a little terrifying. It was smack in the middle of my monthly cycle, when I estimate that I was most likely ovulating, just like the last bad seizure I had last week. I felt defeated. I had been working so hard to get my seizures under control without medication. I felt I had found my major triggers. I never thought hormones could beconnected.
So I started reading and found a dearth of information. There seemed to be absolutely nothing on women and epilepsy. There was one article, that unfortunately I can’t find now, that actually noted how the researcher could not find a single study focusing exclusively on women with epilepsy, or on the effect of women’s changing hormones on epilepsy. I don’t know how true this is because I’ve since been able to find several scholarly articles that discuss this “hormonally induced” epilepsy. Epilepsy of this kind is called catamenal epilepsy. It isn’t epilepsy caused spontaneously by a woman’s menstrual cycle or hormones, but epilepsy that seems linked to the fluctuation in hormones. In some women estrogen seems to be the trigger while progesterone seems to reduce the seizures or relieve the severity of the seizure. The articles note that the seizure time is just before menstruation, but I’ve found it can cluster differently from month to month, depending (for me) on how my overall hormones are changing thanks be to perio-menopause. Sometimes I have clusters at ovulation, sometimes the first day of my period, sometimes the day after my period ends, or sometimes I just notice an increase in seizures between ovulation and period.
As I’m fine-tuning my own therapy and just linking hormones to seizures, I’m seeing small improvements. Overall, since beginning certain supplements and pinpointing my triggers (sleep deprivation and crappy food), my seizures have been cut in half and I have had only 1 fall, which happened a few days ago (after a meal of crap food, a week of stress, and my hormonal rollar coaster).
Source: http://www.green-and-growing.com/2015/02/the-cure-is-you-dealing-with-chronic_15.html
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