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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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.

Stop Judging and Labeling CVSers! We Are NOT Drug-Seekers!

I recently came across an article online, from Gomerblog, that made me so furious that it has taken me a month to write and post about it. The name of the article is: “Drug Seeker Fills Entire Emesis Bucket With Noise Before Receiving Dilaudid“.

The introduction to the article names a person and labels her with a “mysterious case of opiod-induced gastroparesis” However, this label was not what the original article said! It read, “Cyclic Vomiting Syndrome” when the article was first published online about one month ago. You might imagine my reaction…

Below I copied and pasted the entire article from Gomerblog, with their apology comment, for your convenience. Click here to visit the actual article online.

DAYTONA BEACH, FL – Deborah Samson, a 47 year-old non-diabetic drug seeker with a terrible but mysterious case of opioid induced gastroparesis, was forced last week to languish for approximately 25 minutes before receiving the parenteral narcotic she so desperately demanded due to the callous inattention of local Emergency Department staff.

During that time, Deborah consistently emitted sounds which were mistaken for those of a yak being run over by a train.  The horrid, violent wrenching quickly filled the pink emesis bucket with an amount of noise never before produced by a human.  She then spat out 0.5mL of clear saliva and asked for another bucket, and the entire process began again.

“HHAaaaaaYAAAAKKKKKKKKKKK…pheeewtoo”

“I have a horrible disease!!” she managed to scream between bouts of vile and guttural moaning.  “My stomach empties entirely too slowly — you can look it—-yaaaaakkkk— up because it is on record here.”

The test to which Deborah referred to, is a nuclear medicine gastric emptying study, which determines how quickly a meal exists the stomach and enters the upper intestine.  Despite the fact that she had three different bowel-slowing narcotics in her system, her doctors were puzzled as to why her stomach emptied at a mere fraction of the rate of a normal person’s.

When seen in diabetics, gastroparesis leads to frequent bloating, early satiety, and vomiting.  When seen in non-diabetic opioid induced gastroparesis drug seekers, it leads to incredible amounts of abdominal pain and vomitus consisting of 99% noise.  The sound of a non-diabetic drug seeking gastroparesis patient vomiting is said to sometimes measure on the Richter scale.

According to Deborah, the only medication which will stop the flow of noise emanating from her innards is Dilaudid.  Unfortunately, it also slows her intestinal transit time even more, so the cycle repeats itself.

When it was recommended by Dr. Herb Eaversmells, a local gastroenterologist, that she try to wean herself off of narcotics since they were only exacerbating her problem, she replied, “I’m never seeing you again.  I can’t live without my percocets, fentanyl patches, and IV dilaudid.  Get out of my room now, you quack.  You are starting to upset my gastroparesis.  Tell the nurse to bring me a large bucket and some more dilaudid.”

***End of Article*** The paragraph below is pinned to the top of the comments list after the article.

**Gomerblog OFFICIAL STATEMENT** Ok normally we don’t like to intervene in the comments section, but we feel obliged to this time. First off we would like to apologize for including Cyclic Vomiting Syndrome (CVS) in the original article. It is a horrible disease and should not have been lumped together with drug seekers. We edited it to “opioid induced gastroparesis” which is a better reflection of the articles original intent. Unfortunately drug seekers and “actors” are the true problem for us medical professionals and for patients with real gastroparesis. These drug seekers put on all kinds of shows in the ER and make it very difficult to discern real disease from drug seekers. Opioid abuse is rampant in the US. In 2012, 41,000 people died because of drug overdoses. In 2011, 2.5 million ER visits were the result of prescription drug and opioid abuse. Medical providers who prescribe opioids are putting their medical license on the line and are responsible for the outcomes and it puts us in difficult situations sometimes. The articles intent was to shed light on how ridiculous and how low these drug seekers stoop to acquire narcotics. Opioids cause nausea + vomiting, and are probably a poor choice in gastroparesis patients for this reason. The article is not making fun of true gastroparesis patients but rather the drug seekers bogging down our system and causing professionals to become jaded with their acting. We apologize if you have true gastroparesis and were offended. It was not our intent. Gastroparesis does have real complications and can lead to serious morbidity and mortality. Opioid abuse does too though.

Angry and hurt don’t even begin to cover the emotions I felt after reading it. (To be clear, I read it long before the “apology comment” was added.) And I wasn’t alone. After many outrageously angry comments from sufferers of various true disorders, someone decided to change the label of the woman in the article from “Cyclic Vomiting Syndrome” to “opiod-induced gastroparesis. . And made the apology statement and acknowledged that CVS is very real and very terrible. They defended the article by claiming it is “satire” associated with the behavior of true drug-seekers. It’s not enough for me, so I’m speaking up. It’s the satiric attitude that is damaging to those with true illness in the long run.

A lot of damage was done here. Stigma and misinformation was spread far and wide. I saw more comments from medical professionals who laughed and clearly stated that they don’t believe in our illness(es) either. The comments were exceedingly condescending and judgmental coming from people with whom I have no choice but to trust with my life when I need the ER to prevent life-threatening dehydration/electrolyte imbalance. It made me feel judged, alone, and scared to trust the ER in the future. Which can lead to my failing to go to the ER when I need it the most.

This is going to stir up a ton of emotions. I’m angry too. But it is a topic that needs more attention, so that’s what I’m giving it. Despite the anger that I know the article will incite in CVSers, we should all know exactly how others are potentially MIS-judging us and MIS-labeling us. There are people in this world who are so addicted to their drug-of-choice that they will learn the symptoms of medical disorders such as CVS, gastroparesis, etc… with the intent of “acting” sick in the ER to obtain the drugs they require.

This drug-seeking phenomenon is apparently so common that ER staff have become jaded, and in many cases seem to leap to the “drug-seeker” diagnosis without giving the patient the true benefit of the doubt. This is a huge problem, because as more time passes, more and more people with legitimate illnesses are being turned away from the ER due to the “appearance” of being a drug-seeker. This is a fact. It has happened to me, and to many people I know and correspond with.

Another frightening fact is that CVSers can die from things like dehydration and/or electrolyte imbalances when those symptoms are ignored or treated inadequately. We are frightened as well as miserable in our suffering when we seek the ER for help.

I know from experience that once they make the decision that you are a drug-seeker, there is no amount of begging, pleading, or reasoning with them that will change their minds. You might as well walk out and try another ER, because all of your anger and righteous indignation will only be seen as further evidence that you are in a belligerent state of drug withdrawal.

Can you imagine how you would feel if you knew your body was very sick to the point of dangerous outcome, and you went to the ER for help, and you were turned away due to the misconception of being a drug-seeker? I don’t have to imagine how I would feel. I’ve felt that way before. I describe it as a feeling of helpless anger and terror.

In the apology comment, the author of the article does admit his mistake. But I think the entire point is that he/she got it entirely WRONG at first! This person has had experience with drug seekers, and apparently bases his/her future reactions on those experiences first. It wasn’t until some angry readers brought it to his/her attention that there are legitimate disorders which cause these exact same behaviors, that he/she retracted what was originally said and apologized for any implications otherwise. If I had met this medical professional in the ER, I would have been at the mercy of his/her snap decision of me. And he/she would have been wrong! So, then what might have happened to me as a result of this incorrect decision? It’s a scary thought.

I have become so electrolyte depleted in the past that ER doctors have told me that I am in danger of cardiac arrest. This happened within a couple hours of episode onset. It is not always that intense, necessarily, but sometimes, with some people it is. (Thankfully my episodes aren’t quite that intense recently.)

The implications of being turned away from the ER due to the appearance of being a drug-seeker are much more severe than it might seem at first glance! I hear of CVSers being turned away from the ER on a daily basis and it is absolutely unacceptable. I am scared for my friends and what could happen to them.

Yes, drug-seeking is a terrible thing, and is costly to the system. It also misdirects the ER staff attention from those who are truly sick. It causes distrust and uncompassionate behavior between medical professionals and patients. But it also causes the people who truly need help to distrust medical professionals and feel animosity towards them.

However, if you are a medical professional, I implore you to refrain from the “satire” that was displayed in this article. I further implore and challenge you to take a different approach the next time you suspect a drug-seeker in your path. I can understand the frustration of giving the drug-seekers what they are seeking. But please see that is their karma, not yours. Wouldn’t you feel much worse if you assumed incorrectly, and someone in true need of treatment was turned away by your judgment? I deeply feel that it is much better to err on the side of caution, than to risk an error that could affect someone so negatively and deeply.  It is not the job of you as the medical professional in the ER to intervene when someone is abusing drugs. It is your sole job to administer treatments for illnesses/injuries and prevent people from suffering pain or dying from those illnesses/injuries. You are not a judge nor a jury, and have no right to impose “your form of poetic justice” on the individual, regardless of their crimes.

Change begins with us. Be the change you wish to see in the world. Thanks for listening.

 

 

The Frustrating Hormonal Link

Written on 11/10/14

A little background info on this post is that my historical patterns of episodes seem to indicate that my changing hormones are maybe my number one trigger next to positive excitement. I cannot tolerate exogenous hormones at all, and as a result have to use non-hormonal methods of birth control. I’ve researched and am trying to get some testing done that could shed some light on the relationship between my episodes and my hormones. What I’ve learned is that hormone testing is extremely hard to come by. For a lot of reasons, some of them good, some not. The information below is the very best I have gotten so far, in many years of research. It’s not much, but at least it’s something. And something can lead to something else. So, I’m hoping to follow this lead.

I had an appointment with my gynecologist today and got her to briefly discuss more intensive hormone testing throughout the month to try to see what things look like when I’m normal, and when I’m in an episode. She says that there might be “saliva” versions of the hormones testing still available at compounding pharmacies.

Here’s how it works:

I call up a pharmacy to see if they are a “compounding” pharmacy. Most likely these WON’T be big chains like CVS or Walgreens. More likely it will be a small privately owned family pharmacy that has been around a long time. Then if they are, I will ask them if they have saliva hormones testing kits available. If they do, all I have to do is go in to the pharmacy and talk to the pharmacist about having the tests completed. I asked 5 times to make sure, but they are certain that I do not need any type of documentation or prescription or anything for this. Anyone can just walk in and ask for this. Then, I think it is up to me and the pharmacist on how often I test my hormones. I’m thinking once or twice a week until I am clued in to any patterns, then I could hone into a particular week if I have reason to suspect something.

Oh, and guess what? Insurance definitely doesn’t cover this. It will be all out of my pocket, and they had no idea what I can expect in the way of price. At least in this small town, I probably won’t have too much trouble finding an old family pharmacy that compounds. Finding one that carries the tests might prove to be more difficult. I do have a couple of good friends who are pharmacists locally, so maybe if I bark up their tree I can make some magic happen.

Another topic of discussion was a future hysterectomy if we determine that hormones are playing that kind of role in my CVS. She kept saying that at my age she would want to leave my ovaries, and I kept telling her that would defeat the purpose, and that my ovaries are what have to come out to end the hormone craziness. Then she goes on to tell me that I wouldn’t want to experience the symptoms of menopause unless I have to. I begin to shake my head and think, “here we go” in my mind. I told her that any symptoms I experience will be heavenly compared to my CVS symptoms, and that I would gladly trade them any day. She continued in this motherly voice saying “hot flashes are bad honey, etc…”… Oh my, I nearly laughed loudly in her face. Why oh why won’t the doctors learn about what happens to us in episode??!!!???!!! Instead of being an ass  about her ignorance I contained myself to chuckling at them and telling them that they must have no idea what a CVS episode entails. Bring on the hot flashes baby, bring ’em!! Because I promise I will LOVE it compared to my episodes! I can tell they didn’t understand and/or believe me, but I just lost the motivation after that. I tried, I really did. But after that I was done and ready to leave.

Ohhh, it just kills me how every single time I visit a doctor it puts me in a terrible mood. Even the best of my doctors like this one is (excluding Dr. V of course). It is so annoying to walk into an appointment, knowing that I know much more about my disorder than my doctor does, yet I’ve gone to them looking for answers about it in some fashion. Answers that I won’t get. I get my hopes up every time. I shouldn’t do that. Why do I get my hopes up? I should be used to this by now. I should know that they probably won’t know anything about CVS or be able to answer my questions, and be pleasantly surprised if they do. (I realize I got some answers today, and I am pleasantly surprised I have an answer, just not happy that it will cost me an arm and a leg.) Instead I get angry about everything. Angry about the broken medical system and the “doctors” that it has created. Angry that I waste my money every time I go. Angry that I am a doctor myself and I can’t just order myself the tests and medications I want myself to have! Sigh… Forgive me, I needed to say all that or I was about to explode.

At least this place gave me info that I didn’t previously have. They aren’t the worst. I’m just frustrated. Some of the lower points of the visit went as follows…

At the beginning of the appointment, they had obviously not refreshed their memories on my history/conditions. I had to explain it AGAIN, and wasted valuable time I could have spent asking my questions. So, I was already clued in to their lack of knowledge on the CVS. But then they tried to make me feel like a dinosaur for requesting to be fitted for a diaphragm even though we discussed how hormones and IUDs are not an option for me. No one seemed to understand that it really is my only option They kept reiterating how outdated diaphragms are, and that no pharmacies will even carry them anymore. They have to order it straight to them, and I come pick it up later. They didn’t understand why I want it, even though I was explaining that I can’t tolerate hormones. They don’t think insurance will cover it, so I had to promise to pay in full for it if they don’t. Which brings me to another rant…

Why in the hell won’t my insurance cover it when I have demonstrated that I am unable to tolerate hormones??? Why in the hell doesn’t the DOCTOR decide what I need and what the insurance has to cover for me?? Why in the hell do I have to financially break myself each month to pay for the supplements, non-hormonal BC, etc… that are helping my diagnosed medical condition when every paycheck I receive has a portion deducted for insurance. What the hell am I paying for? Nothing. Absolutely nothing, that’s what.

The most frustrating thing is that I could be on the verge of figuring something out that could help me and others. Yet there would be no possibility of it happening whatsoever if I weren’t researching, learning about, and pushing for this myself. If not for that I’d just be at everyone’s mercy who tells me that hormonal links are hard to follow. So what if it is hard??!! Do it anyway! Think of what we could accomplish if it gave us big answers for those of us with hormonal links! But, alas, it is not so… I understand why. (Money.) But understanding makes me angry!

One more rant about this experience, except this one is for your amusement….

Today was the first time I have ever been mid-exam – feet in the stirrups kind of mid-exam, and the doctor gets a beeper telling her she has to go deliver a baby NOW. She and her assistant hastily apologized and left the room with me spread-eagle alone in the room and waiting for the nurse practitioner to come in and finish. Ummmm, is this common? Surely this has happened to someone other than me…?  I chuckled about it, but I really felt very exposed and abandoned! It was a new one for me….

I hope I didn’t make too many of you men uncomfortable today, but probably not many men clicked on this post anyway [wink]

Birthday Girl Gets An Episode

Written on 10/22/14

Happy birthday to me! In 8 years of having CVS, I had my first episode on my actual birthday when things were planned for me. I’m not a fan.

Drove to Birmingham to meet my best friend. 2 hour drive. We got nails done and met friends for dinner. I played it so safe and only ate whole foods all day long. Nothing that has ever been a trigger. No alcohol at all. Trying everything to prevent what I felt would happen in the end.

Speaking of that… Which was it? Did I have a feeling that it would happen, and that feeling came true? Or do I always have a feeling things like this will happen when I have positive excitement, and when they do happen, I  then later I just assume my feeling came true. But, could it have been that it would have come true anyway, or it might not have, and my “feelings” have nothing to do with it? Like a self-fulfilling prophecy almost? That probably makes no sense at all to anyone other than me…. But I wonder how much my excitement and anxiety push me over then edge, or if I would have gone over anyway…

Any who… I started feeling the prodrome during dinner and tried to ignore it and make it go away. This rarely works but I’m still stubborn and try. Then I took meds. No effect at all. Still nauseous. We were scheduled to play laser tag after dinner because that’s what I had told everyone I wanted to do. We go there and I decide to try to vomit in the bathroom and stop it before it started. So I did. And felt better for all of about 5 minutes. Then it all came back. This is while we are waiting to be called back for laser tag. So, I got to a point that I knew I wouldn’t make it out of there without vomiting, and I also knew I was getting too nauseous to have any kind of fun, and getting on my way to being too nauseous to function. I didn’t want to get stuck inside that maze and need to puke. So I very embarrassingly told everyone who showed up to play laser tag with me that I was too sick to try to play. They were understanding but I felt like a complete ass anyway. They were only there because I wanted to do that. My friend had bought my tickets and they were non refundable, which made me feel horrible. I went to the car and puked in the backseat while they played. They tried to get me to let them take me home right away, but there was no way I was going to let them all leave without at least playing the game they had showed up and paid for. So, it was about 30 or 45 minutes in the back of the car puking and waiting on them. Of course, by the time they came out I was much worse than when they had left me and they all felt horrible about it.

My friend brought me back to her place where I completely destroyed the guest bedroom of her apartment with my flailing and thrashing about all night. I’m sure her apartment neighbors could hear me puking and no one got any sleep at all. She had to go buy me Gatorade in the middle of the night. She’s an amazing friend and she didn’t complain at all. But she did get really upset. It’s the 2nd time she’s seen me in episode. She gets upset when she can’t do anything to help. I nearly felt like I needed to comfort her, instead of the other way around lol.

Oh, and I tried the injectable sumitriptan. She injected me with it twice, as directed, throughout the episode, and neither shot did any good at all. Nothing. Nada. I didn’t even get the weird sensations people say they get for a few seconds when they take that stuff for the first time. I didn’t feel anything from it. Not a blessed thing. The “things migraine” don’t ever seem to help me at all, and that’s been consistent for years. So, now I know yet another abortive drug that DOESN’T work for me lol.

Also, we talked about how I probably shouldn’t go on our Girl’s Trip weekend that we have planned in November. To the Grove Park Inn and Spa in Asheville, NC!!!!! A RELAXING trip, no doubt, that would become much less relaxing to the others when I interrupt it with an episode. Because I look forward to it so much that I get sick, no doubt. I try not to be a pessimist when it comes to this thing. I try not to let it control me or keep me from living my life. But I have been back on a once a month, if not more, pattern for several months now. That’s a big flare up for me, and something, I’m not sure what, is not letting my efforts with diet count for fewer episodes.

I think my hormones are changing, based on occasional erratic periods that are becoming erratic more frequently, despite that the ONE hormone test I’ve had done recently says “normal”. And I think that hormones and positive excitement are my most consistent triggers. I think by keeping hormones under control I have fewer episodes, but when they are out of whack I have more that happen during positive excitement circumstances. Just grasping at straws as usual when I’m discouraged….

I know my diet is helping, and that it might take years for it to help on a large-scale. But I feel that hormones and positive excitement are triggers outside of that box, if you will, and those are going to need to be addressed separately.

So, I’m feeling a little down about having to step back from the spa trip that I have already paid for. I don’t want to go get sick, and I don’t want to ruin their time if that happens. There will be more in the future. sigh…

Back to the episode….

I wasn’t at home, 2 hours away. I had my meds with me, but none of it worked at all. I couldn’t fall asleep, period. I flailed around for nearly 24 hours before giving up and calling my parents to come get me. They had to turn their day upside down to do it, but they did it. I love them. And they brought me all the way home. I slept for 30 minutes on the drive home, and that little bit of sleep helped to stop nearly all the nausea. It gradually went away after that, but was tolerable, as opposed to before at her house where it wasn’t subsiding enough for me to drive home. I actually talked to my dad most of the way home, which is a good sign for me. If I’m nauseous, I’m generally not talking unless it’s absolutely necessary. Then I got home and finally smoked. And it all went away. Just like that. Makes me never want to leave the house, and how sad is that???!!!

It took 2 days for my energy to come back though. I stayed in the bathtub nearly all day on Monday, and spent Tuesday making food that I can eat for the rest of the week. My hubby is out-of-town and I didn’t realize how much energy it would take for me to be by myself the 2 days after an episode. I should have realized, it’s like this every time I can’t stop them and they go on for any amount of time. But I didn’t realize, and ended up taking 2 days off work this week that I didn’t have available to take. I’m out of sick leave and covering with my vacation time. Which blows. But I’ve been out of both before, and I shouldn’t complain as long as I have some time to use.

Something has to give. Why oh why am I in this flare up that won’t stop? Hormones? Anxiety still?

I’m very stressed in my personal life, and I don’t handle it well. I have made lifestyle changes that help me to feel better between episodes and about my life in general, but aren’t helping my episode frequency per se. I think I’m emotionally overwhelmed at home. I really think it’s making things worse. But how do I do anything about that? I can’t stop the daily stressors of life?? I try to handle them well, but some things just make me so upset that my body is getting distressed too. These are the things that we can’t escape in life, so I don’t know what to do.

 

Woman Crying

 

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.

 

Goal = Wean Off Nortriptyline

Written on 7/18/14

Wow, I’m really gonna do this!!

I saw the psych today that scripts out my nortriptyline. Last time was 6 months ago. I updated him on going to the conference and about finding the positive correlation between my having regular episodes and wearing the Nuva Ring. He agreed when I told him I’d never take hormonal birth control again. I told him about going on the supplements seriously and how it has made a drastic difference in my energy levels. He seemed excited (genuinely so, I think) when I told him I’d been running about 10 miles per week, and that I have hardly any anticipatory anxiety about episodes. He loves that I am using exercise and diet as preventatives. We also discussed that nortriptyline is now a class D drug in terms of pregnancy. (*note* I have since learned that this isn’t true, and it is still class C.) He agrees that it is dangerous for me to take it when I am not able to use a more reliable form of birth control. So, when I suggested weaning off, he was very supportive and completely on board. He said he thinks I’ve come a really long way and he thinks I can do this!! He is very encouraged that the natural route seems to work on me and encourages me to keep it up. I really think he trusts me when it comes to managing my medications! Such a good feeling, for a change, to be praised by him, (or any doc). I have felt in the past that he didn’t really know what to do with me, even though he’s never made me feel like a nut. I think he was encouraged that a tough patient is doing well. I left feeling good and with confidence that he is supporting my decision to do this.

I have SO got this! Hoping I don’t have to eat those words later, but I really think I’m going to be able to do it. Cheers! [smile]