I Was Interviewed by a News Agency About Cyclic Vomiting Syndrome!!

Veterinarian deemed attention seeker due to rare condition that caused her vomit up to 12 times an hour now cures herself with natural diet.

Media is a big deal. Right? We all tend to watch and listen to it – even if we don’t like it, or don’t necessarily believe it. Awareness is a big deal too. And for those of us attempting to spread accurate information far and wide about our misunderstood and stigmatized disorders – the media can be an especially helpful tool for doing so. However, I can tell you from experience that sometimes you really have to put yourself out there for the sake of the cause… for the end game… and it’s not always easy to do that. The anxiety struggle is real. Very real…

Out of nowhere, I received an email from Nicolas Fernandes with Caters News Agency, asking me if I would be willing to do an interview with him regarding my experiences living with Cyclic Vomiting Syndrome. When I asked him how and why he chose me, he responded that he saw my blog, and thought I would be interested. After a quick search confirming legitimacy of the inquirer, I gladly accepted the unique opportunity to share my story with “the world”. After all – we need all the awareness we can get, right? And this is a golden opportunity!

After accepting, I immediately became nervous and full of anxiety about the whole thing… What will I say? How will I accurately and fairly represent myself and the CVS community? How do I decide upon which topics to focus? How will it be received by those with CVS and by those who’ve never heard of it? Will it be helpful? What if what I say is misinterpreted? What if I’m misquoted? How do a bring the best message I can bring?

With those thoughts racing around inside my head, I prepared by writing down what I would say. I created a speech for a 3 minute video and I repeatedly recorded it until I was happy with it. I spent about 2 hours trying to make that 3 minute video, 1 hour on the phone answering Nick’s questions,  and about an hour gathering pictures. I wanted it to be perfect, but was also well aware that the end result would largely be out of my hands. I then determined to let it all go, and relinquish the final result as something beyond my control. I simply hoped for the best.

And then it was published… And uhhggg…. I didn’t really like it. 😦

I was told the focus of the article would be how I’m improving my chronic illness through a well-rounded, holistic, and natural approach to medicine – as opposed to a traditional approach to western medicine. But after reading it for the first time, I was concerned that the message sent wasn’t the one I was trying to send… My immediate thoughts went something like this:

  • Holy crap, the title is a mile long!
  • It sounds fantastical.
  • I’m not cured! Cured?? What??
  • Oh no, this looks like “click bait”!
  • Ummmm, that’s not what I said…
  • …or how I said it…
  • That’s not what I meant…
  • My God, what have I done….???

My main concern is that the article misleads others to believe that changing to a healthy diet without doing anything else can lead to a “cure” for CVS. In reality, the improvements I’ve experienced are a result of many things I’m doing, and I perceive all of those things to be equally important (for me). My treatment includes a well-rounded holistic approach involving several modalities – including plant-based diet, hiking, yoga, meditation, running, natural supplementation, and use of essential oils. That’s not to say I think that list is complete or 100% accurate, but it’s what’s been working for ME.

You see, the first thing you need to know about CVS is that it’s complicated and multi-factorial. Meaning, it manifests differently in each of us according to our unique set of problems, and we are all helped by different things. Confusing? Yeah… to say the least. Hence, why no one can figure us out. Imagine being in our shoes… And when all the test results would indicate us to be “normal”, we inevitably are forced to cope with the accusations of exaggeration and malingering by the only source of help we have available to us. Those accusations (of me) were wildly incorrect. Which brings me to stigma….

They mentioned the stigmatizing experiences I was previously subjected to, but I thought the way the article was written made me sound like a “victim”, rather than a strong and independent warrior who has successfully taken her health into her own hands. Whine-ing is something I have avoided doing within my CVS journey, and it sounded whine-y to me. Perhaps I was reading too much into it, but honestly I was disappointed, and a little bit embarrassed.

But then I read it again… and for some reason it didn’t seem quite so bad the second time… Perhaps because I really wanted it not to seem so bad…. So, I read it again – but this time I pretended I was someone who doesn’t know me and has no idea what my goals were for the article… and that’s when I realized something very important: No matter what I wanted it to say, the article contains vital information about how to treat CVS in a natural way. In that moment, I realized how to overcome my anxiety about the whole thing and focus on the important thing…. which is AWARENESS!! I focused instead on how this article will suggest a method of treatment perhaps not previously considered by others which could help them… and that even though the method presented within the article isn’t an exactly accurate representation of what I’ve been doing – it doesn’t matter because they don’t necessarily need to do all the things I do anyway. The article will simply lead them in the right direction to research and learn about treatment of CVS through natural medicine, and they can experiment to see what works for them!

It was also an important reminder for me that anxiety is IN-appropriate. That’s why it’s a disorder. The most important thing was always to share information to the best of my ability, bring awareness of CVS to others, and hopefully help some folks along the way. When I brought my focus there, I was able to overcome the anxiety I was feeling.

It’s impossible for me to know how many total people this article might eventually help… But, I can tell you that since the article’s publication, I’ve had a handful of folks reach out to me – either for more information, or to tell me they were either helped or encouraged in some way through reading it. The traditional saying is: If it helps only one person, it’s worth it. I agree whole-heartedly. Knowing that anyone at all has improved the symptoms of CVS through information I provided is a powerful motivator indeed. I remember when I was the one searching for the same information… it was worth everything to me when I found/realized it. Because that information is what has given me the opportunity to live a quality life with a chronic illness.

In fact, I’m happy to report that I’m currently living a FANTASTIC life, and have broken my record length of 6 months between episodes, as of June 1st, 2018!! I’m going for the gold now… I’ve set my sights on making it one entire year without a CVS episode. I know I can, and I hope I will.

This article obviously isn’t my first attempt at bringing awareness to my circles about Cyclic Vomiting Syndrome… I’m a member of several Facebook groups, I created my own CVS Warrior Facebook page, I created this blog… I’ve previously been very active and shared my story in Cyclic Vomiting Syndrome Association (CVSA) message boards. My story has been published in a book about CVS which you can search (Rare But Not Alone) and buy on Amazon. I’ve designed t-shirts and created fundraisers selling them for CVSA, hosted a Run For the Bucket 5K to fund raise for CVSA in my tiny home town (I was the only runner), and I’ve shared my story on my own personal page to my friends and family. Not every effort has rendered the results I was hoping for, but each time there’s always been at least one person who reaches out to let me know it made a difference to them, and that makes it worth it every single time. With each new effort, more and more people are reached – not just one person. That’s why I’ll never stop sharing… Our numbers are growing. We are many warriors, growing into a formidable army of truth sharers and stigma squashers.

So, to recap:

  • a few short emails
  • one, hour long phone conversation
  • 2 hours making a video (only took that long because I’m an obsessive perfectionist)
  • 1 hour gathering pictures
  • 15 minutes creating 2 Facebook posts (warrior and personal)

That’s all it took to create an article which has now been viewed by over 6000 people from my Facebook page alone. That’s right folks, you heard me correctly! My stats show over 6K views on my little ol’ warrior page!! It’s received 69 comments and has been shared 59 times from my page source. I have no ability to know how far it’s spread beyond that, but one of my previous classmates from vet school sent me a message telling me my article made it to her Mom’s veterinary group that has over 9K members, and that I was famous! I was shocked! So, yeah, it’s circulating out there. People are seeing it, and people awareness is being accomplished! And THAT’S what was important in the end.

Click here to read it.  And don’t be shy, please share it!  Let’s keep it spinning far and wide, so it finds everyone who needs to read it! A very special thanks to those who’ve already shared. ❤ My heart is yours. #CyclicVomitingSyndromeAwareness

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“Vomiting Seizures” CVS Awareness Day 2018

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.

Nutritional Supplements for Cyclic Vomiting Syndrome Warriors

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Welcome to the 3rd post in my series of posts about the Holistic and Natural Lifestyle for Cyclic Vomiting Syndrome!

In case you’ve been waiting for it – this is “The Supplement Post”! I’ll go into detail on which supplements I started with, how that protocol has changed, and finally, my current supplementation schedule. (If you need to go back and catch up, click “The Power of The Holistic Approach” and “Let food be thy medicine, and medicine be thy Food” to read the 1st and 2nd post in this series.)

Before I get discuss my current protocol, I should mention what supplements I have taken previously as recommended for CVS sufferers. You can click “My Supplement Regimen“, to read a previous blog post for more detail on my previous supplement protocol before embarking on the “Natural Lifestyle”, but here are the major supplements I have focused on taking for the past couple of years to help with the mitochondrial dysfunction aspect of CVS: (The heading links will take you to the Wiki or Home Web page for each supplement. Click on the pictures for the links to purchase the products.)100mg-activeq-180-softgels-uses-ubiquinol-the-active-antioxidant-form-of-coenzyme-q10-7

  1. CoQ10 – This product is responsible for my first major increase of energy, and change from a life of chronic fatigue, to a life of energy and motivation! carnispan-timed-release-l-carnitine-fumarate-880mg-60-tablets-5
  2. L-Carnitine – Helps our mitochondria function properly, and should be taken in conjunction with C0Q10.
  3. B-Vitamins and Magnesium – In a product called “Preventa-Migraine”. I highly recommend this product, especially if you have migraines associated with your CVS episodes. I actually do NOT have migraines with my 7164avr6sdL._SY679_episodes, but I found that after 2 months of taking this product regularly, my episodes had begun to 611p157I78L._SX522_decrease in intensity and frequency. I feel this product played a role in that improvement. I’ve included the supplement ingredients label for your convenience. The other ingredients are natural substances that have been shown to help individuals with migraines. Click the pictures for a link to purchase the product.

But – here is what I’ve been doing lately, and I feel that the changes and additions are making a major positive difference:

I began the new initial supplement protocol at the same time I began my “30 Day Detox Diet”, which was discussed in my last post. This protocol was prescribed for me by my Naturalist Doctor. I have not altered it in any way from what she recommended for me. I’ll begin by listing the supplements and familiarizing you with how they help. The heading links will either take you to the product website, or to a site with further information on the product. You can click on the pictures to be taken to a link to purchase the product.

  1. Cell Food – Oxygenation, mineralization, detoxification, metabolic efficiency and respiration; helps increase energy levels, enhances brain 61neW9wqPwL._SY679_61yU6xUIWAL._SX522_functioning, alertness, and concentration; supports free radical removal, provides electrolyte activity, supports allergy relief, helps balance metabolism, helps improve metabolic efficiency with metabolic enzymes, aids in digestion, protective against microorganism overgrowth, includes amino acids. (8 drops, 3 times per day, for 3 months)
  2. Vitamin D3 (2000 IU) – Supports endocrine system health, supports proper blood sugar regulation, thumbnail.asp thumbnail.asp2supports proper function and health of the cardiovascular, immune, musculoskeletal, and nervous systems; has anti-cancer properties, helps overcome cravings and fatigue. (1 capsule daily, with food, ongoing)
  3. Pro DHA – DHA is the fatty acid that supports a healthy brain, eyes, nervous system, and mood. In 81bJleS6z5L._SY679_ 81gcNIDlaDL._SY679_fact, at least 20% of the brain is composed of this vital fatty acid. Research shows that DHA supports memory, cognition, and emotional well-being, in addition to promoting healthy eyes. (2 capsules daily, with food, ongoing)
  4. Ultimate FloraMax – A probiotic. Enhances immune system response; supports digestive, 71ZP7CEqPPL._SX522_ 71ZqxsevGaL._SY679_immune, and respiratory systems; helps increase the ability to simulate the nutrients from food and supports improved gastrointestinal support. (1 capsule daily, until finished)
  5. Pancreatin & Ox-Bile Extract – Digestive Aid. Improves the body’s 7917ability to utilize nutrients through enhanced digestion. Digestive enzymes help the body break down and absorb nutrients, and reduce the chances of toxins being released by putrefaction and fermentation of undigested foods. It also helps enhance immune function, improves circulation, and helps counter inflammatory and degenerative conditions. (1 capsule, with each meal, ongoing)
  6. Intesti-Max – Helps strengthen and support the protective intestinal lining, promotes healthy digestion and nutrient absorption, promotes 11a8-RONU6Lintestinal cell health, provides powerful antioxidant support, helps to maintain and restore proper intestinal permeability, specially designed to help assist repair in the mucus lining that coats the digestive system; may be used for stomach or duodenal ulcers, bleeding intestinal lesions, and any irritation or ulceration of the GI tract. Contains L-Glutamine, n-acetyl d-glucosamine, gamma oryzanol, and soothing herbs. (1 scoop in the morning, 2 months)
  7. Bach Flower Remedy – Emotional balancing and healing; support relief from depression, anxiety, stress, trauma, and other emotional factors that impede healing; helps when feeling generally tired and unwell. My naturalist makes the mixture for me, and gives it directly to me. (4 drops, 4 times per day, ongoing, as needed)
  8. Grapefruit Seed Extract – Broad spectrum natural anti-parasitic, antiviral, anti-fungal, and antibacterial properties. Powerful concentrate cardiovascular-research_gse-grapefruit-seed-extract-CR2oz_main_60x60 cardiovascular-research_gse-grapefruit-seed-extract-CR2oz_side1_60x60that aids the body’s natural defenses against flu and colds, sore throats, and even allergies. (15 drops, 3 times daily, until finished)

So, now that you know a little about what I’m taking, here’s a clearer picture of the daily dosing schedule I must maintain to ensure I take all these supplements properly:

Upon Arising:
  1. Morning Drink – 8 ounces
  2. Cell Food – 8 drops in morning drink
  3. Ultimate Flora Max -1 capsule
  4. Grapefruit Seed Extract – 15 drops in morning drink
  5. Intesti-Max – one scoop in morning drink
  6. Bach Flower Remedy – 4 drops under tongue
Breakfast:
  1. Pancreatin Ox-Bile – 1 or 2 tablets
  2. Bach Flower Remedy – 4 drops under tongue
Lunch:
  1. Pancreatin Ox-Bile – 1 or 2 tablets
  2. Pro DHA – 2 capsules
  3. Vitamin D3 – 1 capsule
  4. Cell Food – 8 drops in water or tea
  5. Grapefruit Seed Extract – 15 drops in water or tea
  6. Bach Flower Remedy – 4 drops under tongue
Dinner:
  1. Pancreatin Ox-Bile – 1 or 2 tablets
  2. Cell Food – 8 drops in water or tea
  3. Bach Flower Remedy – 4 drops under tongue
  4. Grapefruit Seed Extract – 10 drops in water or tea

Some of the supplements are easier to take than others. In particular, the ones that are drops meant to be diluted in another liquid before drinking have proven not to be the tastiest things I’ve consumed. The Grapefruit Seed Extract is very bitter, and not surprisingly tastes exactly like chewing on a grapefruit seed. The Bach Flower Remedy tastes a little like I would think a flower petal might taste. But I’ve actually grown to enjoy that one with time, and I’m happy about “tasting a flower” 4 times daily. The Cell Food tastes like I squeezed a little lemon in my water, so that’s not hard for me at all, and is actually very pleasant to drink. The Intesti-Max has no flavor whatsoever. But it doesn’t dissolve easily, so I end up drinking water with powdery globs floating in it. Not very appetizing to the eyes, but once I got used to the consistency; it was easy to put it down the hatch with the rest. I have gotten used to the other “flavors” with time. The pills are easy, of course.

The hard part is making this all a part of a normal routine, and ensuring I have all these things with me to take at every meal throughout the day. I sit down once a week to organize the pills into doses for the week. This takes me about 30-45 minutes total. In order to accomplish this I have purchased multiple pill dispensers, as well as millions of plastic pill packets to separate daily doses and put in my purse or lunch box for work. In case you aren’t aware, most supplements are the size of horse tablets for some reason. My husband likes to joke about my most recently purchased pill dispenser, since it is about the size of a large laptop computer. He calls it the “death bed model”. Not really in good taste, I realize, but it makes me laugh all the same. If I don’t take the time to separate the doses ahead of time, I learned that I’ll be rushed, and might fail to take things properly. It also would take nearly 5 minutes to dig out all the pills with each dose, so it saves a ton of time being able to grab the pre-separated dose, and go.

After the intitial 30 day period, the following supplements were added to the protocol:

  1. Mito-ATP – This is an antioxidant, which also supports mitochondrial function. (2 capsules, 2 times daily, ongoing). I specifically asked for this supplement to be added, based on the current supplementation recommendations for Cyclic Vomiting Syndrome. This product contains lrg_MATP1CoQ10, L-Carnitine, B-vitamins, and more – all in one pill! I have tried several products over the years, and always had to buy “the mito-coctail” in separate supplements. I no longer have to do that. This product has all of the supplements necessary for “the mito-coctail” in sufficient doses when taken multiple times daily. It is also the most natural and purely made product with these substances that I have found to date. If you have Cyclic Vomiting Syndrome, and you take away one thing from this blog post, I would recommend that everyone purchase this product and try it to see if it helps you. You will need to take it for more than 3 months, at the proper dosage (higher than the recommended label dose for CVSers) to see results. From my own personal experience, I can tell you that while the results take time, they are worth the patience and waiting for them. My energy levels have been nearly child-like since taking this regularly. It’s absolutely amazing to go from chronic fatigue, to having the energy to conquer the world, in a mere matter of months! Click on the text link above to go to a website and see a full list of ingredients! Click on the picture to buy it on LiverMax_1013Amazon!
  2. Liver Max 1 & 2 – Aids in natural detoxification processes in the liver. (2 capsules LM1 in AM, 2 capsules LM2 in PM, until finished)INN-43000-2 INN-43000-1
  3. Coenzyme B Complex – (1 capsule daily, until finished)Adrenal_Health_Bottle_60ct AdrenalHealth_60ctSupfax_007-1191-0811-1346426883
  4. Adrenal Support – (2 capsules, 2 times daily, 3+ shoppingmonths)
  5. GABA – Inhibits stress, anxiety, and depression. Calming. (1 capsule daily, 1-3 months)
  6. Women’s One Daily – A natural multivitamin. (1 cap daily, 1-3 months)lg59 PU0139_label
  7. L-Glutamine – Aids with gut health and memory. (1 capsule, 3 times daily, until finished)

Here is how the new daily protocol looks after all the adjustments:

Upon Arising:
  1. Morning Drink – 8 ounces
  2. Women’s One Daily – 1 capsule
  3. Ultimate Flora Max -1 capsule
  4. Liver Max 1 – 2 capsules
  5. Coenzyme B Complex – 1 tablet
  6. L-Glutamine – 1 capsule
  7. Adrenal Support – 2 capsules
  8. GABA – one capsule
  9. Bach Flower Remedy – 4 drops under tongue
Breakfast:
  1. Pancreatin Ox-Bile – 1 or 2 tablets
  2. Mito-ATP – 2 capsules
  3. Bach Flower Remedy – 4 drops under tongue
Lunch:
  1. Pancreatin Ox-Bile – 1 or 2 tablets
  2. Pro DHA – 2 capsules
  3. Vitamin D3 – 1 capsule
  4. L-Glutamine – 1 capsule
  5. Mito-ATP – 2 capsules
  6. Adrenal Support – 2 capsules
  7. Bach Flower Remedy – 4 drops under tongue
Dinner:
  1. Pancreatin Ox-Bile – 1 or 2 tablets
  2. Liver Max 2 – 2 capsules
  3. Bach Flower Remedy – 4 drops under tongue
  4. L-Glutamine – 1 capsule

It was also recommended that I take 10 drops of Cell Food in water when I have a CVS episode, for nutritional support and electrolyte balancing.

I feel that I should mention that these supplements are not cheap, and insurance will not pay for them. However, paying for preventative medicine means you pay much less for treatment oriented medicine, and this is a concept that has held true for my experience. I have had nearly non-existent medical bills since I have consistently made and maintained this change in my lifestyle. When I put the pen to the paper, I’m saving more by spending money on my good health and preventing more costly hospital episodes and doctor visits.

In summary, I am taking many supplements which are meant to deal with various bodily processes, and optimize those processes. I believe these supplements are necessary in order to help detoxify, and to provide the body with optimal substances with which to function at optimal performance. I feel a vastly positive difference in the quality of my daily life. My CVS symptoms, and my health in general, began improving when I began taking supplements a couple of years ago, and has continued to improve in a significant way with each change I have made that I listed above. However, these supplements and protocol were specifically tailored for me and my body by my ND, and might not be exactly right for others. I highly encourage doing your own research, or seeking out a specialist to direct you to the specific supplements that will benefit your current, individual health the most.

Fellow Warriors, I hope this post finds you well, and gives you new information with which to work within your own life for optimal health!

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The Power of the Holistic Approach

Some of you know that I have been using a holistic approach to attempt to heal my body naturally. During the past 9 years of battling Cyclic Vomiting Syndrome, I have been swallowing multitudes of prescribed pills, none of which were making the difference I felt they should be making on a consistent basis. Yes, I did see positive results from some of my medications, but those effects generally decreased over time. I have realized, over time and with experience, that doctors were just prescribing “the next drug on the list”, as directed, rather than  taking time to think about the root of the problem, or how to address that!

As someone who can legitimately claim the word “doctor” after her name, (regardless of the species on which I am licensed to practice medicine), I am disgusted with the modern paradigm of medicine practiced in this country. There are only a few “doctor’s offices” in which I have walked in the past 10 years which have helped me and my condition. The others simply collected money from my insurance company, in exchange for documentation of a problem and a prescription written for said problem. There were rarely discussions of lifestyle changes, preventative medicine techniques, or holistic approaches to medical problems. In this country we reach for pills first, and seem to be stumped if they don’t help. We have forgotten (some never knew) that there are many other helpful approaches to medicine, that might in some cases, be much more helpful than what we consider to be traditional here in America.

Here is a list of Wikipedia links to some of these approaches, to help you become more familiar with what is available.

I’ve recently begun seeing a Naturalistic Doctor, and I have been happier with her as my primary care physician than any other I have ever had.  I filled out a small mountain of paperwork prior to my appointment, so that she could learn many details about my medical history. It literally took me days to complete it all. She wanted this information a month prior to my appointment. My initial consult with her lasted nearly 3 hours, while she diligently and attentively questioned me about my disorder and all things related or unrelated. I can’t tell you how I’ve yearned for a doctor to listen to me the way she does. She strives to understand the root of the problem, and how we address those problems naturally. All I want in the whole world is for someone to listen to me, and to understand. And she does! And it’s wonderful!

She prescribed many lifestyle changes for me, some of which were very different from my routine, but others were not so different from the natural methods I had been practicing myself for the past couple of years. I’ll go into the specifics of my changes in another post, but for now, I’ll tell you that I began an intensive detox program for the next 30 days. And then I have continued on through the next 30 days, with only a few minor changes and allowances from the first plan.

It has all changed my life in a very big way. Yes, I have seen positive changes occur gradually over the last 8 years of my learning and growing with this disorder. Occasionally I found a medication or two that took me from being mostly sick, to mostly well. But, the changes I have experienced over the previous 2 months have been more positive and more drastic than any changes that I have experienced thus far during this journey. In two months, my energy has returned to levels I don’t think I’ve had since high school. At 34 years old, I want to conquer the world, and I have the energy to do it. I also have the motivation, and clarity of mind it takes to cultivate mindfulness and focus. It’s absolutely amazing. Two years ago I was chronically and excruciatingly exhausted pretty much all the time. I never felt rested after sleep, no matter how much I got. Wow, has that all changed for me! Not to mention the happy little side effect of the needed weight loss that is occurring with a healthy diet. I’ve lost nearly 20 unwanted pounds in just a few months! I am not “skinny”. I don’t like that word. I am lean, muscular, and strong. I feel wonderful.

With regard to my CVS episodes – since beginning this regimen my episodes have dropped drastically in intensity. They are also beginning to occur less frequently. The loss of intensity is huge. It makes the episode nearly manageable. Oh, it’s still torture, but I haven’t needed to go to the ER in almost a year, which is an accomplishment that I am extraordinarily proud of, considering that has been my main goal thus far. Time for new goals??….

So, what exactly am I doing???….  Watch for my next post, where I’ll explain my initial detox diet in great detail! I’ll explain other aspects of my approach in other posts, also in great detail. It should be a good series, and I hope you find some helpful information within this and the upcoming posts!imagesCA29RVHK

Eating For Health and Recovery

When it comes to eating for health and recovery from any chronic illness there is a lot to be learned. There are many “diets” out there, and we must do our research before diving into major dietary changes, based on our individual circumstances.

Much of my “learning” has recently been accomplished via online webinars that teach about functional medicine and how to heal your body through natural means, like optimal nutrition. I have attended two of these webinars in the past year. The Evolution of Medicine Online Summit and The Healthy Gut Summit. These were week-long events with an average of 4 hours of presentations a day to listen to. It takes a commitment of time to get all the information, but has been very worth it for me. The opportunity to listen to these for free has passed, but they are still available for purchase. Also, if you follow the website, I’m sure there will be more of these soon, and you can register to listen for free!

Another great part of my learning comes from simply reading and researching anything I can to learn about optimal cellular nutrition. Since we now have strong evidence linking CVS to mitochondrial disorders it makes sense to eat in a way to treat a mitochondrial disorder.

What I’ve learned might shock you. It seems that with all our advances in technology, we have failed when it comes to food. Ever heard the saying, “If it ain’t broke, don’t fix it.”? (That’s the southern version.) Well, it’s like that. The food we had for thousands of years before technology wasn’t broken, and we shouldn’t have “fixed it” with all the processing and adding of preservatives and chemicals. It was all in the name of convenience for the consumer, and money for the companies, of course. Historical people had it right all along. Fresh, organic, locally grown food really is best.

I’ll be the first to admit that it’s nearly impossible to eat clean and fresh, depending on geographical location and individual circumstances. For me, I simply don’t have much time, (or desire for that matter) for cooking. But eating fresh requires cooking multiple times weekly. My husband is an angel and helps out with this a lot. I live in a place where organic, locally grown veggies and fruits are not necessarily easy to come by. I’ve recently been saved by a new Publix opening near me, but prior to that it was difficult to find anything clean or local. I’ve recently learned of some online resources, such as Thrive Market, for ordering health food right to your door. There are some other ways to be creative. Try asking around the local farmers about purchasing from them. Some will, some won’t. Farmers Markets and Community Sponsored Agriculture are options for some.

There’s also that thing where the most recent generations seem to have had our taste buds brain-washed to love processed food with preservatives and sugar instead of “real food”. I know, because I was one of them. Now, my parents did a great job of restricting our access to candy, soda, sweets, etc… And my Mom cooked us balanced meals. I wasn’t a picky eater, so I was never bothered much by food. I ate everything, and loved pretty much everything I ate. When I came of age to work and make my own money in high school, I decided to treat myself pretty much daily with Mountain Dew, Sun Drop, and various candy bars, which I thought myself to deserve for having not eaten them for most of my life. Then, in college I decided to be completely lazy, and eat out of boxes and cans for 6 years. And lets not forget all the booze. That definitely didn’t help. This carried over into the married years as well. I feel that I became like a food junkie for all the flavor and none of the nutrition.

The thing that is important to understand is that processed food is basically a “ghost” of the food that it once was. It’s like an outer shell with the insides missing. The nutrients have been processed away, to make a long story short. When I think of how I seriously deprived my body of optimal nutrition for about 8 years of my life, and how the onset of my CVS was in my last years of college, it makes sense that lack of optimal nutrition was a factor in my body finally deciding to genetically express the CVS that had lived within me all along. To be clear, I am not saying that my poor nutritional choices “caused” my CVS, because I always had the genes for it. I am saying that multiple factors stressed my body to the point that CVS manifested in me at age 25. I strongly believe that diet is one of the major factors, among many others, that helped to open the door that let this beast escape the confines of my unexpressed genes. And, based on that, I feel that I can do a lot for my body by simply eating for optimal nutrition.

So, I bet you want to ask me question that might go a little like, “What diet are you on?”. The answer is that I don’t follow any specific “diet”. There is a lot of information out there online, and everyone should research this individually. I don’t think there is one diet that fits all, or even fits all CVSers. You have to experiment, adjust, and tweak. Some people have multiple health issues that complicate matters. For example, if someone has CVS and has a disorder where they can’t digest fiber, then raw fruits and veggies aren’t going to be the wisest dietary choice.

With that said, below is an outline of they type diet I try to follow. I hope it gives you an idea of what my food goals are. If I had to point you towards a diet, I would tell you that I follow the “principles” of the Paleo Diet more than any other. I believe it to be a clean, natural way to eat. However, I don’t eat near as much meat as the true Paleo Diet would call for. I believe in eating as little meat as possible and getting my protein from plant sources as much as possible. I am not a vegetarian, as I do believe that some meat should be included in a well-rounded diet, but I believe we should restrain ourselves and limit that intake to a much smaller amount than is normal in today’s society. Also, I still eat grains, while trying to avoid gluten as much as possible.

Nearly all the recipes I cook with come from Paleo Leap.

  • Fruits and veggies
    • All of them and as many as possible
    • Eat the rainbow. The more, darker, deeper, brighter, intensely-colored, the better
  • Omega 3 fatty acids
    • Nuts like almonds and walnuts
    • Various fish. Wild caught when possible
  • Lean protein
    • Red meat, poultry, seafood
  • Avoid caffeine
    • Sleep disturbances
    • Headaches
    • Crash and burn
    • Perpetuates fatigue
  • Avoid simple carbs
    • Caffeine
    • Sugar
    • White flour
  • Avoid artificial sweetener
    • Like aspartame or saccharine
    • Use sweet potato, carrots, squash, etc…
    • Use honey
  • Avoid gluten
    • causes inflammation in the gut and body, even if you don’t have celiac disorder

Maybe the most important thing is to keep a food journal. I have a hard time keeping one of these strictly too, but they can be most enlightening if you do them for long enough to see patterns emerge. The main thing I notice is that before, food was almost the bane of my existence. I was terrified of food and I nearly always felt bad after eating it. I always wondered if the next bite I took would be the bite that sent me into my next episode. That has changed for me! Now, when I eat a meal of 80% fresh fruits and veggies and 20% protein and simple carbs (like potato), I feel satisfied and energized after eating. I don’t have that yucky full feeling anymore. I feel like I have nourished my body and I feel better for having done so. It’s an amazing and noticeable change. Although I do give in to the occasional craving, I will never go back to my earlier eating habits. I have found that they more I eat properly, the less my body will tolerate any crap. In other words, I often pay for it when I give in to the temptations that the culinary world presents to me. The work environment is often a stumbling block for me, when I want to try the latest homemade recipe brought by a co-worker who doesn’t use the same ingredients I use to cook with. Sometimes I resist, and am sad to have missed out, yet happy because I still feel good. Other times I give in, and it tastes SO GOOD, but I’m paying for it dearly within 30 minutes. It is what it is…

So, now I bet you are wondering something like, “Well, has it helped?” The answer is YES!! It has helped tremendously. I mentioned above how I don’t have the fear of food or bloating after eating anymore, but I also have improved my symptoms over the course of time. I haven’t had a full-blown episode in over 3 months now. Some other factors involved are supplements, but I can tell you that since changing my diet drastically I feel better on a daily basis. I have more energy, mental clarity, and motivation. I truly feel like I am treating myself slowly, but surely, and feel more “normal”. This isn’t magic, and it isn’t like taking a pill. Nothing happens overnight. I still have bad days. But over time I have stayed the course, and I really am seeing the positive results. Even if these diet changes didn’t do anything to treat my CVS, they are still making me a healthier and happier person, which can only help my body to deal with CVS, so I feel that the changes are worth it, no matter what.

One last thing, for those of you who are moaning, and whining, and sniveling, “….but I hate vegetables….”. I can tell you this in complete honesty. Our taste buds change. We have desensitized our taste buds and changed them with today’s flavor enhanced foods. I used to hate things like carrots and sweet potatoes. Once I made the changes, after a while my taste buds began to change again. To my advantage this time. I began to find that I was enjoying the flavor of foods that I never enjoyed before. This has only gotten more amplified with time. I now LOVE most veggies and fruits. To me they taste natural, and clean, and earthy, and then unique in their own way. Some are sweet or have flavors that I don’t know how to describe. Subtle flavors seem satisfying to me, and artificial flavors are overwhelming and distracting. I can appreciate flavors in a way I never could when my taste buds were saturated with sugar and other chemicals. It’s lovely actually. So, there is hope for you too, my friend. No one said it would be easy. This is medicine. But if you stay the course, it will be worth it. Because isn’t it worth it to give up a little bit of “flavor” in order to improve the quality of your life?

If you are reading, I hope this helps you. I’m just a Warrior, fighting with (hopefully) calm strength and knowledge to improve my symptoms and live the best life possible. Eating clean and healthy will not only help those with chronic illness like CVS; it will help anyone who wants to feel better and live a healthier lifestyle regardless of other factors.

My Supplement Regimen

Written on 10/14/14

I thought I would share what I’m using in the way of supplements. I’m trying to do the most with supplements and natural preventative methods such as diet and lifestyle changes. I’m really stepping up my game here. I am weaning off nortriptyline and these will be my only preventative.

Currently taking:

CoQ10 – Bio Sorb Active Q Ubiquinol twice daily from Epic 4 Health. Ordered online and get a discount by stating that I use it for CVS.

L-Carnitine – Naturally Carnispan Time Release L-Carnitine Fumarate twice daily also from Epic 4 Health and get a discount.

I had my CoQ10 levels analyzed when I went to Dr. V last week. Just got the results, and I am more than twice the number of the upper normal range. I’m only slightly above the range Dr. V recommends, so I’m backing down and taking them twice daily rather than 3 times daily, which I have done for several months now. Now that I know I am established in CoQ10, I’m going to try adding the riboflavin and magnesium to see if it helps. While searching I found the products below.

Just ordered and am about to start taking:

Preventa Migraine- with PA Free Butterbur Root (Petasites), Magnesium, Riboflavin, and Feverfew– 60 capsules. Sold by: Family Tree Remedies. I ordered this online through Amazon Smile and ensured that CVSA got their donation from the sale. Price was $38.09, should last a month. It is free of pyrrolizidine alkaloids (PA), which is important to be aware of if you buy this product. PA damages the liver. This one is safe in that regard.

Sold by: AJM Nutrition Price $31.49. Also got this through Amazon Smile. I have been really wanting a good probiotic to support gut health and digestion, and these are the most natural ones I have found. And they have 32 different probiotics, not just 2 like the ones in the drug stores. They also seem to be from a reputable company as well. I read that Garden of life Raw probiotics are the #2 probiotic listed out there today. The #1 product was not natural, however, so I went with this one.If anyone has used any of these before, I’d love feedback.