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!

Antioxidants Concept or Anti Oxidants or Antioxidant

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]