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CVS Research

Cyclical Vomiting Syndrome Research (based in the UK) is dedicated to providing information and advice to sufferers of CVS and their carers. We will try to keep things as simple as possible to help you through this debilitating illness.

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We're always pleased to hear your story - and what works best to help you get through an episode.

Newsletter - news and stories

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A few of things we're investigating at the moment - and some items of interest.

i) Early admittance to A&E

ii) If constipation is one of your triggers, but the preventative meds you are taking on a daily basis are giving you constipation, are you unknowingly creating episodes?

iii) CVS and migraines appear to be linked - at least in some people - so would migraine treatments help your CVS? Migraines are caused by inflammation of the brain after it has received false sigmals indicating damage repair is needed. If the same thing happens with a so-called stomach migraine then anti-inflammatories, including antihistamine, might help.

iv) Your microbiome - the friendly bacteria in your gut. A simple change of diet could reduce your CVS.

v) The light at the end of the tunnel.

vi) The Vagus Nerve and CVS.

vii) Ryan - a CVS sufferer whose story made his local newspaper

Cover pic

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Light at the end of the tunnel

When I set out to create the cover for the ebook "Cyclical Vomiting Syndrome" I decided to use a picture of my own daughter, Beth, taken when she was in hospital during an episode, and fitted with a nasal feeding tube.

Who would have thought that, during a well phase, she would become Miss Hastings and be a finalist in Miss British Isles 2020/21 - even after having to cope with all the stressful postponements caused by the Covid-19 pandemic.

It just goes to show that no matter how bad you feel during an episode you never know what's around the corner! Keep fighting, warriors!

Cover girl

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Early admittance to A&E
You need to go to A&E each time when into or going into an episode that you can't abort. You need to explain to the receptionist, and later to any medical staff you see, that you have CVS, what that entails and what treatment you require. Yes, you may have to wait some time to be seen but it will add visits and treatment in your hospital records. You can also write to the hospital Trust and explain that you have CVS, and need treatment by IV fluids and anti-emetic. Also say that the sooner you are treated the sooner your episode is stopped - this frees up a bed and staff, thus saving NHS money.

I've been down this route with my daughter and now, eventually after seven years, she can go into A&E early in an episode and we are able to push for quick triage then into Same Day Emergency Care for treatment and a safe discharge, often within hours. This discharge should only be once you can take in drinks and something to eat without inducing vomiting or nausea.


The Vagus Nerve – association with CVS
For many people stress and anxiety are major triggers for episodes of Cyclical Vomiting Syndrome. These emotions can be started within the body in various ways – concern about an upcoming event, relationship problems, employment or financial issues, even worry that an episode might be due to commence. You may not even be aware of exactly what it is that activates the amygdala part of your brain. This can then set off a fight or flight response which signals your brain to pump stress hormones, preparing your body to either fight for survival or to flee to safety.

The vagus nerve is used to counteract your fight or flight system when it is triggered unnecessarily, which helps you develop a healthy stress response. When stimulated, you feel calmer, more compassionate, and clearer - benefiting your autonomic nervous system and mental health. Healthy vagal tone means emotional regulation, and better physical health as well. You are more able to pull yourself through trauma and troubles.

What is the Vagus Nerve The vagus nerve is the longest cranial nerve in the body. It comes from the Latin word, vagus, for “wandering.” That’s because it wanders throughout your body, with wide distribution connecting the brainstem to the body. It helps both the immune system and the body’s inflammation response to disease. It has four main functions: sensory, special sensory, motor and parasympathetic. It comprises of two parts - the dorsal, in the back, and the ventral, in the front. During neuroception – when the vagus decides whether the fight or flight command from the amygdala was correct - both parts may be activated as you analyze environment for cues of safety or danger. Safety cues activate the ventral, and danger cues activate the dorsal. All this can happen in split seconds, without any thought from you. There are three states of being: mobilization, immobilization or social engagement in response to your environment. A healthy vagal nerve leads you to respond in the best way.

Gives You Gut Feelings The vagus nerve also manages fears, real or imagined, by sending information from the gut to the brain, which is linked to dealing with stress, anxiety, and fear–hence the saying, ‘gut feeling.’ These signals help a person to cope with or recover from stressful and scary situations.

Emotional Regulation Any time your brain perceives a threat, due to the sympathetic nervous system, it triggers the fight or flight response. The parasympathetic nervous system does the opposite–it calms you. The parasympathetic nervous system is activated when a danger is over, such as being pulled out of harm’s way from ongoing traffic while crossing the street. You are no longer distressed, you are at rest. However, sometimes, the brain remains in panic mode, as if you are still in danger.

The vagus nerve helps you to remain calm when you are stressed and to know when you are no longer in danger. It helps you to “rest and digest.” This is low tone dorsal activity. The parasympathetic though has high tone dorsal activity when you get into freeze mode. Typically, if you aren’t healthy emotionally, you are either in sympathetic (fight or flight becoming hypervigilant) or parasympathetic (freeze). In other words, your body can be pumped with stress hormones which can make you hyperactive (with restless leg syndrome, for example) or closing down and feeling totally lethargic, or falling asleep.

It has been found possible to restore self-regulating vagal function through grounding and mindfulness as well self-biofeedback such as working on controlling your breathing. The vagal tone has the capacity to regulate stress responses and can be influenced by breathing, its increase through meditation and yoga likely contribute to the mitigation of mood and anxiety symptoms.

There is also a mechanical device which can help by stimulating the vagus nerve in much the same way as a pacemaker controls the heart. Vagus Nerve Stimulation is often used to control Irritable Bowel Syndrome, but is equally well suited stimulating the vagus to help with Cyclical Vomiting Syndrome. This treatment may be carried out alongside medications such as antidepressants. Remember, though, that however you stimulate the vagus nerve it is helping you control your own body’s reaction to stress and anxiety – a common CVS trigger. Clinical psychology states that the vagus nerve is deeply plugged into our heart, our guts, and our voice. Whenever we turn inward to check in with our true feelings; to check in with our intuitive wisdom; to find our true expressiveness; or plug into the rhythms of ourselves or the world around us, we're lighting up the vagus nerve.

When we speak, shout, sing, the vagus nerve is lit up like a Christmas tree - which is one of the reasons why those activities can be so cathartic and emotional for so many of us.

Let’s now look at some ways to stimulate the vagus nerve.

Reset Ventral Vagus Nerve Some of these exercises include The Basic Exercise, The Half Salamander Exercise and The Full Salamander Exercise:

The Basic Exercise

1. Lie on back
2. Interweave fingers on both hands and place behind head
3. Without turning your head, look to the right
4. Remain here until you spontaneously yawn or swallow
5. Return to the neutral state with head and eyes straight
6. Repeat on the other side
The reason you move your eyes is there is direct neurological connection between the eight suboccipital muscles and the muscles that move our eyeballs.

The Half-Salamander Exercise

1. Eyes looks right without turning head
2. Tilt head to the right towards shoulder
3. Hold for thirty to sixty seconds
4. Then eyes and head straight back to neutral
5. Eyes look left without turning head
6. Tilt head to the left towards shoulder
7. Hold for thirty to sixty seconds
8. Then return to neutral state

A variation is to look in the opposite direction of the head tilt so the head tilts left and eyes look right and vice versa. Both hold their necks thirty to sixty seconds.

Full Salamander Exercise

1. Get on all fours
2. Head is facing down
3. Look left without turning head
4. Tilt head to the left
5. Let your left spine twist with the head tilt to the left
6. Hold for thirty to sixty seconds
7. Bring head and spine to the centre to straighten out
8. Repeat on right side

Other Ways to Stimulate Your Vagus Nerve 1) Breathwork- diaphragmatic breathing
Place one hand on your stomach and the other hand on your chest. As you breathe in, feel your stomach expand, and when you exhale, your stomach should go back down. This is also known as “belly breathing.” This lowers your heart rate and blood pressure.
2) Connection
Community and belonging help you to feel safe and secure. When you are connected, you are calmer and more positive. To enhance this connection sit in a quiet place and concentrate on thoughts of the people around you who care, places you have visited which made you feel calm and at peace. You can consider this akin to meditation.
3) Diving Reflex
To stimulate the diving reflex, you need cold exposure. You can splash cold water, or put ice cubes in a ziploc bag, against your face or back of your neck. The diving reflex slows your heart rate and increases blood flow to your brain, which in turn reduces anger and relaxes your body.
4) Singing or Gargling
Don’t you always feel better when you start to sing? Your worries are swept away by a song. Well, that’s because it’s activating your vagus nerve! Simply sing to feel better, or gargle if you prefer.
5) Probiotics
Some research has shown that having healthy gut bacteria improves brain function by activating the vagus nerve. This can be achieved simply by taking daily sachets of probiotic drinks, and maintaining a healthy diet with fermented food such as yogurt, kefir milk, sauerkraut, pickles, and more can be found on the internet.
6) Omega 3 Fatty Acids
You can get these from fish oil, or if you’re a vegan, you can find them in chia seeds, flaxseed, hemp seed oil and walnuts.
7) Yoga
Yoga is a parasympathetic activation exercise that helps with digestion, blood flow and more – all of which may help your CVS. 8) ASMR (Autonomous Sensory Meridian Response)
ASMR sends “tingles” from your scalp down your spine and helps calm your nervous system with the use of triggers or tools. This entails whispering, scratching, tapping and other noises that pull you into a trance. There are many to be seen on Youtube.
9) Humming
If you want to activate your vagus nerve, humming has a strong effect on the vagus nerve. Try combining humming with yogic/meditative breathing. Take deep, slow breaths in through the nose, and hum as you slowly breathe out. Focus on the vibrations of your hum in your ribs, your throat, your mouth and your cranium. Repeat until you feel relaxed. Communal singing, choir or prayer are also known to be beneficial, as is gargling.
This process of humming is very similar to ’Om’ chanting, as practised by many when meditating.
10) Positive Self-Talk
Even a simple mantra can stimulate your vagus nerve - “The bravest thing you can do when you are not brave is to profess courage and act accordingly.” This produces positive self-talk even when you are feeling afraid. Act in accordance with your affirmations.

Conclusion
There are many things you can do to activate your vagus nerve and many benefits to a healthy vagal tone. It is your secret weapon to a better you. This is even more important to you if stress or anxiety are a trigger for your CVS episodes – and if this is the case wouldn’t you want to try anything to stop, or at least reduce, your episodes.

If you were suffering from a headache you’d probably take something to stop it, and maybe you might have found through experience that one particular medication works better for you. That said, why wouldn’t you want to try all of the above to see which works best for your CVS?

It’s your body – take control of it.


Ryan's Story
A South Yorkshire man with a rare illness that leads to him vomiting on a regular basis has been rushed to hospital on seven occasions in the last six months.

Ryan Lewis, 22, has been diagnosed with Cyclical Vomiting Syndrome, a rare chronic illness characterised by cycles of non-stop vomiting, nausea and intense abdominal pain. Mr Lewis said that his experience in NHS hospitals has been "incredibly hard" and he is now fundraising so that he can receive different forms of care privately.

Mr Lewis, who was born in Barnsley and now lives in Sheffield, said that he started suffering persistently with the illness at around September last year after returning from a weeklong holiday with his girlfriend Phoebe Featherstone in Edinburgh. He said: "I couldn’t keep down food and I began experiencing a lot of pain to the point where I had to leave my job. When I have full blown attacks there's abdominal pain and nausea as well. "For a while no one knew what was wrong and I had to undergo a lot of testing and hospital visits. Eventually I got a diagnosis of Cyclical Vomiting Syndrome."

The illness has led to him losing three jobs in the last six months and that he has also struggled with getting Universal Credit due to issues with acquiring a sickness note from his GP. He said that during his worst bouts he has vomited as many as ten times a day and that on average he believes he's vomited once every two days over the last six months.

He said: "It gets to the point where you are throwing up blood because there's nothing left."

Mr Lewis, who now works as a tutor, added that his experiences at hospitals in Sheffield have been frustrating as he has been sent to the wrong ward and been given inconsistent levels of care and attention. He also complained about the lack of beds and the time that doctors are able to give to patients.

He said: "There is no cure yet for CVS so I am now in the process of finding the best form of pain management and medication to ease my symptoms. This condition has completely changed my life, I am constantly in and out of hospital with pain and vomiting. "My experience in hospital has been incredibly hard and I am coming to the realisation that I am not getting the care I need from the NHS. I'm constantly being put on respiratory wards when I need nurses and doctors that work on the neurological ward."

Mr Lewis has now set up a GoFundMe page to raise funds to help him more suitable care at a private practitioner. He said: "My goal is to have some kind of pain management plan at home that can help me to reduce hospital admissions and allow me to get back to some normality. This has led me to begin looking into private healthcare which can hopefully provide me the level of care I need. "Unfortunately I simply do not have the funds for this as this illness has made it impossible to work."

Mr Lewis's fundraiser had a target of £400 and it has already surpassed that and at the time of writing currently stands at £740. He said that he has his eyes on a practice in the Crosspool area of Sheffield that was recommended to him. He said: "I'm really overwhelmed. It's quite mad. "I posted it at 10 o'clock at night hoping a couple of friends and family would see it and then woke up and it had £500 donated and messages from people with the same disorder wanting to help out."


Gut microbiome
If you want to learn more about what’s going on in your gut, the first step is to turn your poo blue. How long it takes for a muffin, or a couple of slices of bread, dyed with blue food colouring to pass through your system is a measure of your gut health: the median is 28.7 hours; longer transit times suggest your gut isn’t as healthy as it could be. We are only now beginning to understand the importance of the gut microbiome: could this be the start of a golden age for gut-health science?

“The gut microbiome is the most important scientific discovery for human healthcare in recent decades,” says James Kinross, a microbiome scientist and surgeon at Imperial College London.

Your gut microbiome weighs about 2kg and is bigger than the average human brain. It’s a bustling community of trillions of bacteria, archaea, fungi and viruses, containing at least 150 times more genes than the human genome. We are filled to the brim with microbes, which form microbiomes on our skin, in our mouths, lungs, eyes, and reproductive systems. These have co-evolved alongside us since the beginning of human history. But the gut’s is the largest and most significant for our short- and long-term health.

“It’s a vital organ in your body and you need to look after it. If you do that, it will look after you,” says Professor Tim Spector, an epidemiologist at King’s College London.

“Lots of things that people don’t think about, like depression or anxiety, are very clearly modified by your gut microbes. Appetite and ability to digest food are modified by gut microbes. The key finding recently is the link with the immune system. Basically, the gut microbiome is controlling it, sending signals, because most of your immune system is in your gut, helping you fight infections that the immune system is picking off.”

Studies suggest having a diverse population of gut microbes is associated with better health. But when human populations urbanise, microbial diversity declines.

Professor Jack Gilbert is an award-winning microbiome scientist at the University of California San Diego and author of Dirt Is Good. “Over the past 80 years and since the dawn of antibiotics, there has been multi-generational loss of microbes that appear to be important for human health. They’re passed from mother to child [during birth, via breastmilk and skin contact] throughout the generations, but at some point in the last three or four generations, we lost some. We’re not entirely sure if the cause was our lifestyle, our diet, cleanliness in our homes or the use of antibiotics. We’re also missing certain immune stimulants that people in the developing world have plenty of.”

What are the implications of this? “Those changes may be underlying a large proportion of the chronic diseases our society is suffering from – asthma, food allergies, atopic diseases and auto-immune disorders. It’s difficult to prove epidemiologically – 100 years ago no one gave a crap about allergic diseases because globally 50m people a year were dying of infectious diseases. But over the past 50 years of good scientific record keeping, we’ve seen a significant increase in those disorders alongside this loss of microbial diversity in our guts.”

Gut microbes do things the gut can’t do, liberating or synthesising nutrients from food, especially from plants and their polyphenols, living off non-digestible substrates, producing thousands of metabolites – useful chemicals –and making vital short-chain fatty acids that are involved with immunity, with keeping the gut and colon healthy, with moderating the body’s inflammatory responses and with the metabolism of glucose. To do this, microbes need about 30g of fibre a day, but the average intake in the UK is just 10-15g. Is this why modern, low fibre, ultra-processed, high-sugar diets seem so problematic for human gut health?

“It’s very hard to know exactly what it is in junk food that is causing a problem,” says Spector. (When he talks about junk food, Spector means most prepared and packaged foods – including things such as vegetarian lasagne.) “It’s not the fat, carbs and protein, it’s the extra chemicals. The data is probably best for artificial sweeteners that are derived from things like paraffin and the petrol industry, so our bodies and our microbes are not used to breaking them down. But it could be other stuff, like the enzymes you don’t get on the label, or emulsifiers. There are few studies on emulsifiers, and nearly all in animals, but they show that you get reduced diversity and more inflammatory microbes. The idea is that they’re doing the same as they are in cooking: sticking your microbes together, creating an emulsion. Or it could be the lack of fibre and the fact that everything is refined. We haven’t nailed it down, but I think it’s safe to say that ultra-processed foods are bad for your gut microbes and we should avoid eating them regularly.”

The great opportunity – but also the great difficulty – of gut microbiome science is that poor gut health is associated with such a vast range of conditions, from obesity and degenerative brain diseases to depression, inflammatory bowel disease and chronic inflammation. “The microbiome is associated with everything. Pick a disease, it’s associated,” says Kinross. The microbiome is like a convergent science – you have to be an ecologist, a geneticist, a bioinformatician, a clinician and an epidemiologist, to try to make sense of it.”

If our microbes are so important, can’t we just package up the right ones and put them in a pill? Professor John Cryan is chair of the department of anatomy and neuroscience at University College Cork and principal investigator at the APC Microbiome Institute. “We will get strains of bacteria to have beneficial effects. If I have a pain in my head, I want to take a drug that has efficacy for headaches. I wouldn’t just randomly pick one. But that’s what we’re doing with probiotics right now. The science needs to catch up. We’re lumping them together as if they’re the all the same thing, but, like drugs, they may do very, very different things. We need to get precision into probiotics.”

Several other gut bacteria are also being studied as biotherapeutics. “One of the bugs that appears to have disappeared from Europeans, North Americans and Chinese people over the last 50 years, is bifidobacterium longum infantis,” says Jack Gilbert. This bacteria seems purpose built to digest oligosaccharides in breast milk, sugars which babies born in developed areas simply poo out. “That’s why in the western world, baby poo is sloppy, whereas in the developing world, baby poo comes out pretty solid, more like adult poo, because their breast milk is being digested by the bacteria in their intestine – kids growing up in Africa and certain parts of Southeast Asia Africa and certain parts of Southeast Asia that aren’t developed have tonnes of bifidobacterium longum infantis. If we put it into a mouse and feed it breast milk, it digests all the sugars. There are clinical trials ongoing, putting this bug back into children, especially in preterm infants in neonatal intensive care units, to see what impact it has.”

The final frontier for gut microbiome exploration is its relationship with our brains, something the new fields of nutritional psychiatry and psychobiotics are digging into. We already know the gut has its own nervous system, the enteric nervous system, and contains 100m neurons. We also know the gut-brain axis, via the vagus nerve, shoots neurotransmitters produced within the gut around the body and to the brain, which is why Cryan’s lab has studied the impact of particular bacteria on sleep and how certain types of fibre can improve complex cognitive processes.

Kimberley Wilson is a chartered psychologist and author of How to Build a Better Brain. She uses nutrition as part of her treatment plans. “The short-chain fatty acids produced from microbial fermentation of fibre in the gut are quite similar to some mood-stabilising prescription drugs. Some of the association that we see between healthier diets and better brain health could be because your microbes are producing psychoactive substances from your diet to help stabilise your mood. In the future, we might actually prescribe certain types of fibres for certain mental health conditions.” For now, she simply prescribes a lot more fibre to feed what many scientists now consider our second – much larger – brain. “The more fibre you eat, the more substrates the microbiome has available. And the better off we’re going to be, psychologically. I think that’s incredible.”

7 things to change in your diet

Eat more fibre: Most of us eat only half the recommended 30g a day. But start slowly – our guts don’t like rapid change

Eat the rainbow: Choose colourful fruits and vegetables and try to eat 30 different plants, nuts and seeds every week

Eat foods rich in polyphenols: These include dark chocolate and red wine

Eat fermented foods: Tim Spector favours kombucha, kefir and kimchi, as well as unpasteurised cheeses

Eat more omega 3: New research suggests a relationship between gut microbes, omega 3 and brain health

Let kids play with dirt and dogs: Jack Gilbert’s research has shown that since the gut’s population is seeded in early life, allowing small children to dig in soil and play with domestic animals can undo a lot of the damage modern lifestyles do to our microbiomes

Avoid processed foods: Cut back on salt and sugar, both of which seem to affect microbial diversity in the gut.

If you could do any or all of the above and it helped eliminate, or at least lessen, your CVS - would you do it? What do you have to lose by trying this to see if it does affect your episodes?


Medicating and Self-medicating for CVS
Since individuals respond to medications differently, no one therapy works for all affected individuals. Several attempts using different preventive and abortive therapies may be necessary until an effective regimen is found for an individual patient. In particular, treatment failures are frequently the result of too little drug given too infrequently. For example, although most experts target 0.5 mg per kg body weight per day, amitriptyline is often required 1 to 1.5 mg/kg/day for over a month or two in order to prevent vomiting episodes. Blood levels of amitriptyline can be obtained to check that the dose given is adequate and not excessive. (Prescription only).

When preventive and abortive therapy does not work, supportive care during an episode may include bed rest in a dimly lit, quiet room. The administration of intravenous fluids to prevent complications such as dehydration may be necessary. Anti-vomiting medications (especially ondansetron at 0.3 to 0.4 mg/kg/dose, maximum dose about 24 mg), ketorolac used for pain and lorazepam for sedation may also be used. (Prescription only). When children or adults are asleep, they don’t experience nausea. Deep sleep may also reset their system and shorten the episode. In severe episodes, hospitalization may be necessary. Avoidance of known triggers (when possible) may also help reduce the frequency of episodes. Treatment of underlying commonplace anxiety using cognitive behavioural therapy and stress management (deep breathing) is often the key to improvement and rehabilitation. The support of family is considered essential by clinicians to help deal with the unpredictable, disruptive nature of CVS and the likelihood of a delay in attaining the proper diagnosis.

Investigational Therapies

Research into cyclic vomiting syndrome is ongoing. Newer anti-migraine, anti-seizure and anti-vomiting drugs are also being studied as potential treatment options for individuals with CVS.

Capsaicin 0.1% cream (Available over the counter and online)

As an abort medication apply five grams of topical 0.1% capsaicin cream once to the abdomen in a uniform manner when you feel you may be about to go into an episode. As preventative medication it can be used on a daily basis up to 3 or 4 times a day but if you notice any adverse skin reaction that isn’t going away stop immediately.

Exclusions:

Pregnant women, children under 18 years, no prior history of similar symptoms, suspected surgical or infectious cause of symptoms, suspected hepatitis or pancreatitis, allergy to capsaicin or hot peppers, abdominal pain alone (without nausea or vomiting).

Uses:

Capsaicin cream is normally used for arthritic joint or muscle pain but trials have shown that, in some people, it can help with CVS by calming the stomach. It can also be used for regular migraine by applying to the scalp.


Constipation
I. B. writes about constipation from the USA...

I thought I'd share a few things about my experience with CVS. Keep in mind that this was my experience, so it's not open to further interpretation. I'm not implying that anyone else has or will have the same experience. I'm not minimizing anyone else's experience, and I'm not pretending that I'm the authority on CVS. Maybe you'll read something that you find helpful or hopeful. It's probably more likely that you won't. I think I'll give it a go, anyway.

Okay... First, let's get this shit out of the way! Literally! After years of suffering, I started to notice that one of the cues that I was going to come out of a cycle was that I started feeling like I needed to take a s***. At that point, I usually became desperate to go and started looking at things like laxatives. Once I finally started clearing the s*** out of the way, my stomach would "turn on," and my nausea would subside. Over the years, I started to believe that my CVS was primarily driven by my lower digestive system. I started to really focus on the back end of my digestion. I began to build my diet around what would keep me regular, more than what I felt caused immediate stomach discomfort.

The idea was that if I could stay regular, I'd be less sick and/or take less time to come out of a cycle when I was sick. For me, that tactic worked. Hydration is a major component of constipation and digestive health. While it's common and tempting (and often rewarding) to consume very sugary drinks like Gatorade and Pedialyte, at times, it can be counterproductive. Assuming that you haven't dumped all of your electrolytes from vomiting, water is always the best option for hydration. I usually wasn't able to drink water when I was sick, so ice was my salvation. Ice help me control my body temperature when I was in the hot shower, and also kept me hydrated through a steady, but minimal, stream of fluids. Crunching ice cubes can be really tough for those of us who experienced dental problems from CVS. If you can get your hands on the ice Sonic sells and keep it in your freezer, you might find that to be a godsend. It was for me. You can also chop up ice cubes in a blender. Also, a lot of us rely on carb-heavy foods because they tend to be palatable when we have acidic stomachs. Potatoes, heavy breads, and other high-density carbs can cause constipation. Also, pain medications cause constipation, and alcohol can heavily influence dehydration, complicating, and aggravating constipation. For me, focusing more on what I could get out than what I wanted to put in became a huge tool in mitigating my CVS symptoms and ultimately alleviating them all together.

You can't drink it away. I personally had an on again, off again, relationship with alcohol most of my life. Typically, alcohol didn't make me sick while I was consuming it. It often took the edge off my anxieties and sometimes made me feel better. That was unfortunate because it was deceptive and led me to drink more over the years. I'm not an abolitionist, and I'm not trying to tell anyone whether or not they should drink. What I will say is that it's a good idea to thoroughly educate yourself about how alcohol interacts with the human body. Even if drinking doesn't make you sick at the time of consumption, it can be contributing to your overall CVS experience. We all know that anxiety is a major trigger for almost all CVS suffers, and there's a misconception that alcohol alleviates anxiety. The truth is that alcohol greatly aggravates anxiety after the initial consumption. Your blood pressure, anxiety levels, ability to focus, and a myriad of other physical effects continue to interact with your body and mind for hours and days after you consume alcohol. Alcohol is also a major contributor to constipation, as it dehydrates our bodies and subdues our natural tendency to hydrate. There are many other consequences, one of the simplest being that it lowers inhibition, often leading people to eat things they know they shouldn't or engage in activities that complicate their CVS. That's just food (or drink) for thought. Take it as you will. I have chosen not to drink.

Triggered, anyone? While I can't speak for everyone, I think that it would be short-sighted and a bit obtuse to believe that what you eat has no impact on your CVS symptoms. Just like alcohol, the fact that it doesn't make you sick when you consume it doesn't mean that it's not contributing to your CVS. Foods that are slow to digest can definitely complicate CVS, and many foods have consequences like constipation or even diarrhea. I've also found that bloating, or gas, can heavily influence CVS. I believe it's a good idea to avoid foods that create a lot of gas in your system. If you're really serious about having some control of your life, I think you should start to log your food consumption. For me, I found there were certain foods that might not make me sick after eating them for 12 to 24 hours. Other foods made me sick immediately, and some foods had the ability to mitigate or aggravate my symptoms. Identifying what those foods were and how they interacted with each other was a really useful tool for navigating my CVS. Things I found that didn't serve my CVS well were things like fast food, fried foods, gassy foods, foods too high in fiber, and foods with no fiber at all. I know, right! That's like everything! To be honest, living CVS free for me has meant that I had to dramatically change my diet. There are a lot of things I used to eat regularly that I simply don't eat anymore. Becoming a vegetarian was also something that really helped me, and maybe it would help you to. I don't know. I'm just sharing my experience.

Walk it off. Okay, I'm bound to get pushed back for this, but again, I'm only sharing my experience. When I was really sick, I barely felt like I could move. Walking to the kitchen to get a glass of water was impossible. Sometimes, just crawling out of the bathtub required assistance. Obviously, if you're in that condition, this doesn't apply. But, as soon as I would get a little strength back, as soon as I could get a little food in, as soon as my dizziness and vertigo subsided, I would go outside and take a walk. Sometimes, I'd walk with a family member, and sometimes I would walk alone. Sometimes, I would listen to the birds and the wind, and sometimes, I would put on my headphones. I always felt disgusting. We usually need a haircut and a shower, and our clothes are often in a dirty pile. There's nothing that makes us feel worse than being around other people, so if you have a private place to be outside or a quiet street to walk on, that's a great option. Physical activity is good for the mind, body, and spirit. I personally only have anecdotal evidence, but there's a lot of science that supports my assertion. Maybe it's too cold, or too hot, or too windy, but if you can, move your body.

I touched on it briefly, but pain pills can really create a biofeedback loop that's dangerous. I know some of you need your pain pills. Please don't go off on me about this. Those of you who can, might try to abstain from taking pain meds. For me, pain meds really caused problems with constipation, and over the years, after charting my experience, I found that they tended to make me irritable, tired, and angry. As anxiety and emotional composure seem to weigh so heavily in CVS, anything that disrupts those systems holds the potential to make things worse. Both alcohol and pain pills have another hidden drawback, and that's addiction. I'm not going to step into that puddle right now; just drag my toe across the water. It's something to keep in mind.

If you're really feeling bad, you probably weren't even able to read this. For some of you, it just sounds like nonsense. Maybe one person, hopefully a couple, will see something in my experience that reminds them of their own observations. Any little thing helps. I'm not implying that taking any of this into consideration will save you from CVS, but it might become a tool in your arsenal to help you live and cope with this condition.


CVSR So, if constipation is one of your triggers, and the meds you are taking to control your CVS, you might want to consider changing whichever medication is, in fact, creating a trigger for an episode rather than helping.