Another year… more episodes…
Usually for awareness day I choose a particularly brutal episode from the previous year, and attempt to convey the horror to you without scaring you away from the topic entirely. This year I had several topics to choose from… I could have written about:
· That time I booked my flight and secured vacation one whole year in advance… and flew home for the 10 year reunion of my graduating veterinarian class – only to miss the official night of the event due to an episode. Good news is I was able to see and catch up with most of the gang the following day.
· Or the time I booked my flight and hotel, secured leave a year in advance, and payed $400 of non-refundable fees for Continuing Education Conferences – only to miss the first day of the conference and several (paid for) CE hours due to an episode. Good news is that I didn’t miss the 2nd day, which contained some of the most valuable research and information I’ve come across to date on the science of “energy healing”. (www.bengstonresearch.com)
· Or the particularly difficult time my husband flew home to visit his family, and the stress of maintaining my normal routine plus accomplishing additional chores inevitably threw me into an episode while I was all alone. And I learned that a friend I thought I could count on really didn’t understand at all. Good news is that I have awesome neighbors.
· Or the super disappointing time an important friend from veterinary school happened to be in my neck of the woods, and we had the opportunity to hang out and catch up after over 10 years since seeing the other. And we chose to climb Mt. St. Helens together. And then 1.5 miles up, I began having an episode and had to come down – I then had to attempt walking downhill for 1.5 miles while an episode was beginning and intensifying. Good news is that I convinced my friend to continue onward and upward – and she still made it to the summit! While I meanwhile made it to the Jeep – which became my safe place to lie and vomit and await rescue.
· Or that time I spent Christmas Eve in Portland with a friend. And there was a sudden snow and ice storm which closed roads and prevented me from pickup up my husband from the airport that night. And then I started having an episode and couldn’t drive, and my friend had to drive on the ice to the MAXX station and wait with me in the freezing cold for hours while I vomited and shivered. And my husband had to get off the plane and ride the train to me and then drive me home on the icy roads for an hour. Good news is that some friends really are true friends, and can be counted on to help out in a sticky situation.
Rather than tell stories, what I really want to tell you about is my journey deeper into the world of natural, holistic, and energy medicine. But that could take ages, and would bore most of you to death. Suffice it to say that I am continually surprised at the arrogance of humans to ignore the wisdom and effectivity that lies within natural and alternative therapies. People are lazy. They want to simply take a pill and magically become better. That’s a ridiculous notion when you think about it with common sense. We must work for our health as we would work for anything worth having – and it is very hard work indeed.
Fun fact: Did you know your stomach and intestines contain over 500 million neurons? That’s 5 times more than the 100 million neurons making up your entire spinal cord! It’s an entity of its own called the Enteric Nervous System and has been nicknamed “The Second Brain”. It’s strangely gone largely ignored by the medical community until recent years. That’s likely because of how poorly it’s understood.
Do you care about this information? If not – maybe you should… Because knowing and understanding it could be the key to prevention and management of this disorder and many other chronic illnesses. And the truth is – even if you don’t have CVS – you or a loved one could easily become the next to be affected by CVS or a similar disorder.
I’ve decided to begin describing my CVS episodes as “vomiting seizures”. Because that’s something you can probably understand and relate to in your mind. As opposed to CVS… Most of us have either seen some type of seizure occurring in someone we know personally, or via an actor on television. We know (without truly understanding why) that those with epilepsy go “from normal, to seizure” like a light switch was flipped.
It’s similarly difficult to understand how someone with CVS who goes hiking on the weekends and is learning to be a mountaineer can instantly begin vomiting and become bedridden for no apparent reason, requiring intense care and careful attention for hours to days… But if you think of how the same is true for people with epilepsy who suddenly have a seizure, you might begin to be able to get an accurate glimpse of what this disorder can be like.
I lack the ability to describe with words the horror and torment that is “an episode” – but I’ll try anyway… It’s a seizure of nausea. Some have pain, but for me it’s nausea. It’s a full blown traitorous attack of my nervous system against my body – which causes each and every part of me to feel consumed with overwhelming nausea. I feel possessed, consumed, panicked, desperate, crushed, crippled, suffocated, useless, and incapable of normal function. The desperation for the intensity of the nausea to dissipate is likely the most intense feeling of all. That is – next to the nausea.
The nausea is everywhere, not just in my stomach or throat. The intensity is greatest in my upper abdomen. Instinctual behavior takes precedence over conscious control. “Survival” is the only thought that can occur. Making it to the next moment seems like an impossible feat, when simply moving causes my body to wretch, convulse, and expel the contents of my stomach every few minutes. My skin is crawling, and my muscles are twitching of their own accord. I can’t be still no matter how much I want to… not matter how hard I try. Breathing is the only thing upon which I can focus. When there isn’t even a few moments respite from the most intense nausea known to humankind – after several hours, and then days – it becomes hard not to wish for death. I try within my mind to shrink into a tiny ball and find a deeper place within myself to hide from the horrendous reality which my senses have created for me. Mentally, I’m in a fog. I won’t choose to speak unless I think what I have to say will lead to an immediate or eventual decrease in my suffering. I can respond when spoken to, but it is at great cost. The toll of achieving formed thought and the effort of response are nearly always a spike in the nausea and vomiting. I can walk, if I must, but the toll is great when I do. I can drive, if I absolutely must – but this is a terrible idea for many, many reasons. And, again, the toll is great. I’ll then beg and pray to God and every power within the universe for quiet, peace, dark, still, calm, rest, and sleep to come – and for the episode to end, but these things aren’t always easy to obtain even in the best of settings during the best of times. And they’re next to impossible to obtain when the body is exploding with constant nausea and uncontrollable muscle movements. I’m cold, then freezing, then shivering and shaking. Then I’m hot, then sweating, then claustrophobic and suffocating from the heat, and soaking wet from the sweat. Then I’m freezing again, and now I’m wet and so are my clothes. Now the sheets are soaked. I’m even colder now. I get dry and warm, but quickly become hot again. I need to be naked with blankets and towels available. I need fluids rich with electrolytes and a bucket to vomit it immediately back up. I need to maintain my hydration and potassium at all costs to prevent a trip to the ER and a hospital admission. I can’t always control my surroundings, and despite occasionally being able to influence them – I can never control the attitudes of those around me. I know from history I must be prepared to breathe and ride this gnarly wave for another 12 -24 hours… I must learn to accept the episode as it happens, while still hoping it will soon end. I must learn to detach from time, and find that deeper place of survival…
This disorder still is largely unexplained, but we’re making advancements in the research. Some think it’s a form of anxiety disorder – which is an astute observation on their parts – but it’s so much more complicated than that… This disorder is multi-factorial. That’s why we all seem to manifest it a little bit differently. We know now that this is a form of dysautonomia of the brain-gut axis. That’s basically the medical way to describe a seizure of the stomach and guts.
I look forward to the day this disorder is given a new name… To one which better describes the etiology of CVS with regards to neurologic involvement. I’d love it if I could somehow cause the term “vomiting seizures” to become popular within the physicians of the CVS medical community. I’ll be sharing the term with my doctors, and I hope you’ll consider doing the same. You might additionally consider using the term to describe the disorder to friends and family. I think that presenting the information in a way which others can relate will be helpful to dispel the myths which arise from the “fear of the unknown”. I hope that doing so will lead to a decrease in the phenomenon of “unexplained” disorders becoming stigmatized. Ultimately, I hope patients of these disorders no longer fear becoming the subjects of stigma.
It’s my personal opinion that future CVS research should be focused on investigating if these episodes should be re-classified as a form of seizure disorder which is connected with mitochondrial, emotional, and hormonal health, while also linked with anxiety and hyper-excitability of the nervous system.
Have you ever heard of a Focal Onset Aware Seizure (aka Simple Partial Seizure)? It is described on www.epilepsy.com as:
· A seizure that starts in one area of the brain and the person remains alert and able to interact.
· Usually known to be brief, lasting seconds to less than 2 minutes.
· Many treatment options available, including medications, dietary therapy, surgery, and devices.
· Anyone is at risk to get these, and the cause is often unknown.
The article mentions that nausea and migraines can be mistaken for partial seizures. Well… maybe that’s not actually a mistake after all… CVS is known as a migraine variant in some circles. What I’m suggesting is that it’s possible CVS should be reclassified as a previously unseen form of partial seizures. The similarities between my mentation during episode and those described in partial seizures are uncanny. Perhaps we got it wrong (as we often initially do) when classifying these types of seizures as typically brief… Perhaps these longer episodes of dysautonomia should be considered as being a different form of partial seizures…
Perhaps the modern paradigm of western medicine will soon shift to include awareness and equal incorporation of the natural techniques and therapies which prevent and treat the majority of the illnesses which we see occurring today. Perhaps most of us will soon be herbalists, yogis, Jedi masters, Zen Buddhists, channelers of healing energy, vegetarians, or climbers of Mt. Everest. Perhaps there will be a balance between that and what currently is. Regardless of which way others choose for themselves, I know that the ancient (and not so ancient) world of natural medicine combined with the technology of today could produce worldwide and life-changing medical advancements.
Throughout this journey of CVS, I’ve learned that our bodies are much smarter than we are. I’ve learned that the mind and body have powers of which we are largely ignorant, but which we can learn to manipulate for the intent of healing and increasing happiness in the lives of myself and others. I’ve learned of many phenomenons which are unexplained by current scientific knowledge – yet are reproduced consistently in a prestigious research setting, and I’m hungry to learn even more. If you also find these things intriguing, you might enjoy perusing the following websites: (www.scientificexploration.org) (www.princeton.edu/~pear) (www.issseem.org) (www.energypsych.org)
With each new installment of understanding I gain new insight, strength, power, and hope. Even with the devastation of each new episode, I still think I’m getting better each and every day. I think I’m getting closer to my goal of living CVS free. Those are empowering thoughts, since before I was simply resigned to a life of being a prisoner to chronic illness.
I’ll soon be learning all about Traditional Chinese Medicine, and will have my first acupuncture appointment next week. I’m excited for the possibilities which lie therein!
These are the things I’ve found to be helpful for me. I don’t claim they’ll be helpful for you. But I hope they will. That’s why I share the information. Please remember that this is multi-factorial. We’re all different, and we respond to things differently. Don’t take my word for it. Or anyone’s… You are just as smart as they are. Read. Learn. Experiment. Keep what works for you, and put the rest aside. Consult with your doctor, but also learn what they know about the topic for yourself. You can. Listen to your body, and don’t let anyone change your mind when you know something is right/wrong or good/bad for you.
To all my CVS Warriors: You’re all my brothers and sisters in sickness and in hope. I hope this finds you well. I hope this inspires you to find your own way to empowerment and healing. I hope everyday people and also doctors will read this. I hope they care. I hope they listen. I hope things change for the better. I hope these hopes to God and the powers of the universe with the great silent voice which is within me.
Hear my hopes… Please.