Tag Archives: Autonomic nervous system

The Vagus Nerve Guide: Reduce Inflammation and Chronic Illness Through Toning Your Vagus Nerve

I first became interested in the vagus nerve when I read this wonderful and fascinating article about the connections between the vagus nerve and chronic inflammation and autoimmune diseases:

Hacking the Nervous System, by Gaia Vince

The article notes that:

“Operating far below the level of our conscious minds, the vagus nerve is vital for keeping our bodies healthy. It is an essential part of the parasympathetic nervous system, which is responsible for calming organs after the stressed ‘fight-or-flight’ adrenaline response to danger. Not all vagus nerves are the same, however: some people have stronger vagus activity, which means their bodies can relax faster after a stress.”

The vagus nerve is a critical component of the autonomic nervous system, and it is also responsible for the release of acetylcholine (ACh), a neurotransmitter that:

  1. It is a neuromodulator of the central nervous system, the autonomic nervous system, and the peripheral nervous system.
    1. In the autonomic nervous system, ACh has key roles in both the sympathetic and parasympathetic nervous systems, and affects motility through the digestive tract, sweating, tear production, balance, heart-rate, breathing, etc.
    2. In the central nervous system, ACh plays a role in regulating arousal, attention, sleep, and motivation.
    3.  In the peripheral nervous system, ACh controls muscle activation (both skeletal muscles and smooth muscles–the muscles that involuntarily contract and release).
  2. It affects vascular tone.
  3. A lack of ACh is linked to Alzheimer’s Disease, Parkinson’s Disease, autism, schizophrenia, bipolar disorder, and other chronic CNS illnesses.
  4. It suppresses inflammation.
  5. It affects the release of hormones.

The vagus nerve is an essential part of our autonomic nervous system (the parasympathetic nervous system is part of the autonomic nervous system), it regulates inflammation, and lack of vagal nerve tone/health is related to many chronic illnesses.

Hallmarks of fluoroquinolone toxicity are autonomic nervous system dysfunction, inflammation, and even ACh dysfunction.

I explored the connections between fluoroquinolone toxicity and the vagus nerve in these posts on floxiehope.com:

I don’t know whether or not vagus nerve damage is a root cause of fluoroquinolone toxicity, but I do believe that healing and toning the vagus nerve is helpful for all people suffering from chronic inflammation and disease–including floxies.

The connections between vagus nerve health/tone and fluoroquinolone toxicity, as well as my desire to figure out fluoroquiolone toxicity (an ongoing struggle), led me to study the vagus nerve, and explore ways to strengthen and tone it.

I put my findings/research into a book. It’s called The Vagus Nerve Guide: Reduce Inflammation and Chronic Illness Through Toning Your Vagus Nerve and it’s available via Amazon kindle. You can find it HERE.

I hope that you find it to be interesting and useful.

Thank you to each and every one of you who buys the book, and an especially large thank you to those who leave a review on Amazon. 🙂

Please also “like” the Vagus Nerve Guide on Facebook. The page can be found HERE.

The web site for the book is https://vagusnervehealing.com/.

Researching fluoroquinolone toxicity has led me in all sorts of unexpected and interesting directions. I never would have thought that I would be researching the vagus nerve, much less writing a book about it. Yet, here we are. I hope that the information in The Vagus Nerve Guide: Reduce Inflammation and Chronic Illness Through Toning Your Vagus Nerve is helpful to everyone who reads it.

Here is a sample from the book:

The vagus nerve is one of the longest nerves in the human body. It runs from the hypothalamus area of of the brain, down through the chest and diaphragm, and through the intestines. It wraps around the heart, gut, and most of the other organs in the body.

It is convenient to think of the vagus nerve as a highway between cities. One city, Brainopolis, has many thriving tech businesses. The other city, Gutland, is a manufacturing center. Though the two cities have very different climates and cultures, they are intertwined and dependent upon each other. Without the raw goods from Gutland, Brainopolis wouldn’t be able to create its high-tech products, and without the information and technology from Brainopolis, Gutland would be inefficient and slow. In order to transfer goods, products, and technologies from Brainopolis to Gutland, and from Gutland to Brainopolis, an efficient, well-maintained, highway between the two cities is needed. That highway is the Vagus Nerve Highway.

When the vagus nerve is toned, it is like a well-maintained super-highway with minimal traffic on it–information and nutrients travel from the brain to the gut, and from the gut to the brain, quickly and efficiently, so that both can be optimally maintained. A damaged vagus, that has lost tone, is like a pot-holed and jammed highway. The proper information and nutrients aren’t able to go from the brain to the gut, or from the gut to the brain, because the path between those two vital organs isn’t operating properly. Just like well-maintained highways (and other transportation systems) are necessary for a properly functioning economy, well-maintained nerves that connect organs and systems are necessary for a properly functioning body.

The Vagus Nerve Highway doesn’t just connect Brainopolis and Gutland though, it also connects Brainopolis to Kidneydale, Spleenland, Lungora, etc. For those who aren’t following the analogy, I’m trying to say that the vagus nerve not only connects the brain and the gut, it also connects the brain to most the other vital organs throughout the body. A well-functioning, and well-toned, vagus nerve is necessary for communication between your brain and many of your vital organs–including the gut. Without a clear and toned vagus nerve, organs cannot get what they need from the brain, and the brain cannot get what it needs from the organs. Metaphorical traffic jams ensue, and result in real health problems.

A malfunctioning vagus nerve is related to many of the chronic diseases of modernity, including autoimmune diseases, fibromyalgia, ME/CFS, POTS, depression, anxiety, bipolar disorder, digestive disorders like SIBO and IBS, autism, diabetes, heart-disease, and even obesity. When the vagus nerve is not toned, and information is not traveling smoothly between the brain and the organs, neither the brain nor the organs function optimally.

Most diseases (especially the chronic diseases of modernity) are related to inflammation. When you stub your toe and it immediately throbs and swells, that swelling is a helpful inflammatory response in which your body is sending nutrient-rich blood to the site of the injury. Though that inflammation is healthy, much of the inflammation that people currently experience isn’t healthy or helpful. A constant barrage of toxin exposures (pesticides, GMOs, pollution, pharmaceuticals, etc.), the Standard American Diet (SAD) that is full of processed ingredients and toxins, stress, heavy metal exposures, etc. lead to chronic inflammation, and that chronic inflammation can lead to cancer, autoimmune diseases, “mysterious” diseases like fibromyalgia and chronic fatigue syndrome, depression and other psychiatric illnesses, diabetes, obesity, as well as ageing and age-related illnesses. A toned vagus nerve reduces inflammation by producing calming neurotransmitters like Acetylcholine (ACh), GABA, oxytocin, and other neurotransmitters that reduce inflammation.

On the Vagus Nerve Highway, when there is inflammation–the body’s version of a house fire–fire-trucks and other emergency responder vehicles are dependent on a clear and open path in order to reach their destination in time to eliminate the fire. The path that ACh, GABA, and other neurotransmitters that quell inflammation, must travel along is the vagus nerve. A toned vagus nerve will make that process more smooth and efficient, whereas a damaged vagus nerve will stop the signals from reaching their destinations, and will allow inflammation to wreak havok.

Having a vagus nerve that is toned, and a Vagus Nerve Highway that is operating optimally, is one of the best ways to suppress inflammation, reduce the symptoms of many chronic illnesses, and improve your health overall.

In this book, we will explore how to fix your Vagus Nerve Highway (I’ll move away from the highway analogy, and refer to it as “toning the vagus nerve” from here on out), and use exercises and practices that tone your vagus nerve to quell inflammation and improve overall health. The vagus nerve is too often neglected, but it is a vital part of being a physically, emotionally, and socially healthy person.

Autonomic Nervous System Dysfunction from Cipro, Levaquin, and other Fluoroquinolones

Many symptoms of fluoroquinolone toxicity involve autonomic nervous system dysfunction.

The autonomic nervous system (ANS) regulates bodily functions such as the heart rate, digestion, sweating, salivating, respiratory rate, pupillary response, urination, sexual arousal, and certain reflex actions such as coughing, sneezing, swallowing and vomiting. The ANS also controls the balance between the parasympathetic (the “rest and digest” or “feed and breed” system) and the sympathetic (fight or flight system) nervous systems.

Many fluoroquinolone toxicity victims/”floxies” (those who have been poisoned by Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin, Floxin/ofloxacin or other fluoroquinolone antibiotics) struggle with:

  • Digestive dysmotility
  • Either sweating too much or too little
  • Increased heart rate / racing heart
  • Breathing difficulty / air hunger
  • Increased frequency, urgency, and pain with urination
  • Sexual dysfunction
  • Loss of libido
  • Dry mouth and dental problems
  • Dry eyes and vision problems
  • Adrenal dysfunction and fatigue
  • Lightheadedness
  • Loss of balance
  • Anxiety
  • Difficulty regulating blood-sugar levels

ANS dysfunction is also common among those with POTS/Postural orthostatic tachycardia syndrome (“The hallmark sign of POTS is a measured increase in heart rate by at least 30 beats per minute within 10 minutes of assuming an upright position”), EDS/Ehlers–Danlos syndrome (a grouping of genetic connective tissue disorders), and MCAS/Mast cell activation syndrome or MCAD/mast cell activation disorder (an inflammatory immune system disorder that leads to many multi-symptom, chronic illness). ANS dysfunction is also a symptom of each of these illnesses.

Fluoroquinolone toxicity symptoms mimic and overlap with those of POTS, EDS, and MCAS/MCAD. All these disorders are multi-symptom, chronic illnesses for which there is no cure. In addition to causing ANS dysfunction, fluoroquinolone toxicity, like EDS, causes connective tissue damage, and like MCAS/MCAD, fluoroquinolone toxicity involves immune system dysfunction. There is significant overlap in symptoms, and maybe pathology, between fluoroquinolone toxicity, POTS, EDS, and MCAS/MCAD.

You can find many examples of ANS dysfunction (and other symptoms of fluoroquinolone toxicity that overlap with symptoms of POTS, EDS, and MCAS/MCAD) in the stories of fluoroquinolone toxicity on https://fqwallofpain.com/, http://www.fluoroquinolonestories.com/, https://www.facebook.com/groups/floxies/ and here on https://floxiehope.com/. Personally, I experienced several ANS dysfunction symptoms, including digestive dysmotility, increased heart rate, dry eyes, loss of balance, anxiety, adrenal fatigue, difficulty regulating blood-sugar levels, and I didn’t sweat for years after I was hurt by ciprofloxacin.

Most of my ANS dysfunction symptoms, along with all my other fluoroquinolone toxicity symptoms, have improved.

The thing that helped to improve my digestive motility most was supplementing hydrochloric acid (HCL). I think that probiotic supplements and foods, meditation, and time also helped to heal my digestive tract.

A Chinese herbal supplement called suxiao jiuxin wan helped to calm my racing heart. I think that acupuncture, stress reduction, and time also helped.

I can’t pinpoint anything specific that cured my dry eyes, inability to sweat, or loss of balance, but those symptoms have all subsided with time.

Anxiety is common among “floxies,” and it can be severe. The post, Treating Fluoroquinolone Anxiety, goes over some suggestions as to how to deal with it. Magnesium and uridine supplements helped me to get through fluoroquinolone-induced anxiety, and those supplements have helped others too. In addition to reading Treating Fluoroquinolone Anxiety, I also suggest reading some of the recovery stories from people who have recovered from fluoroquinolone toxicity anxiety, especially Marcela’s Story, Ruth’s Story, and Nick’s Story.

I still struggle with adrenal fatigue and difficulty regulating my blood-sugar. I tend to feel better when I reduce my stress levels, avoid caffeine, avoid alcohol, and cut out sugar. I’m imperfect about those things though.

ANS dysfunction, and the diseases associated with it (fluoroquinolone toxicity, as well as POTS, EDS, MCAS/MCAD, etc.) are serious, and often the symptoms of these diseases are severe and life-altering. They are not trivial, and there is no easy or simple “cure” for ANS dysfunction or any related diseases.

With the severity of ANS dysfunction and related diseases noted, I’m going to make a suggestion that I hope doesn’t seem too trite:

Love, connection, community, laughter, and peace can all help to heal the autonomic nervous system. Meditation and breathing exercises are helpful too. Anything that you can do to bring love, connection, community, laughter, and peace into your life will be helpful in healing your autonomic nervous system.

Before you accuse me of being too hippy-dippy, hear me out on the logic behind suggesting that love and peace are healing. When you are stressed, or when you feel unsafe or threatened, your sympathetic nervous system–the fight-or-flight system–is activated, and subsequently, your digestive system shuts down, you either sweat profusely or stop sweating, your heart races, your breathing becomes shallow, etc. You have an acute moment of ANS dysfunction. For most people, this situation resolves itself as soon as the stressful moment passes, and the parasympathetic nervous system is re-activated. However, people with ANS dysfunction (whether it is caused by fluoroquinolone toxicity, POTS, EDS, MCAS/MCAD, or something else), get “stuck” in a state of sympathetic nervous system activation and parasympathetic nervous system disengagement. Love, connection, safety, community, laughter, peace, meditation, and more, activate the parasympathetic nervous system, and shut off the sympathetic nervous system that is shutting down your ability to digest food, have sex, see clearly, etc. Activation of the parasympathetic nervous system helps to relieve symptoms of sympathetic nervous system overdrive, and helps to relieve symptoms of ANS dysfunction.

Exercises and practices that activate and heal the vagus nerve–the long nerve that connects your brain to your digestive tract and various organs, and controls your autonomic nervous system–can also help to heal your ANS, and relieve symptoms of ANS dysfunction. The post, Hacking Fluoroquinolone Toxicity via the Nervous System, goes over the connections between the vagus nerve and fluoroquinolone toxicity, and the post, 32 Ways to Stimulate Your Vagus Nerve (and Symptoms of Vagal Dysfunction), goes over some ways that you can stimulate your vagus nerve, which activates the parasympathetic nervous system, and reduces symptoms of ANS dysfunction. Love, laughter, connection, breathing exercises, acupuncture, etc. help to activate and stimulate the vagus nerve.

ANS dysfunction is complex, and it is not an easy thing to fix or “cure,” and I hope that my suggestion of love and stress-reduction as helpful in symptom alleviation isn’t seen as trite or dismissive.

I wish that ANS dysfunction, and the symptoms associated with it, were more acknowledged as symptoms of fluoroquinolone toxicity. They are serious, severe, and cause significant pain and suffering. Even though I am suggesting that peace, love, and meditation are helpful (they are), they are not simple cures that can be implemented in a short period of time. They are processes and practices, and despite doing their best to meditate regularly, love heartily, etc. many people are still very ill with fluoroquinolone toxicity, and other ANS dysfunction diseases. Neither peace nor love are cures for multi-symptom, chronic, illnesses like fluoroquinolone toxicity. Of course love and stress-reduction are helpful, but they’re not cures. We need more cures… and love… and acknowledgement.

 

 

Do Fluoroquinolones Cause Cerebrospinal Fluid Leaks?

It is well known that fluoroquinolone antibiotics (Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin, Floxin/ofloxacin, and a few others) damage connective tissues–including musculoskeletal connective tissues like tendons, cartilage, bone, and muscle, as well as other connective tissues such as ocular tissue (including the retina), eardrums, and cardiac/heart tissue. Multiple studies have found that fluoroquinolones are toxic and damaging to connective tissues. Given the wide differences in tissues that fluoroquinolones have been shown to deleteriously affect–from cartilage to cardiac/heart tissue–it is reasonable to assert that they damage all connective tissues throughout the body. (Read any of the articles in the citations listed below for information about how fluoroquinolones damage connective tissues.)

Given that fluoroquinolones damage connective tissues (probably all connective tissues), I have a new, developing, hypothesis for how fluoroquinolones lead to fluoroquinolone toxicity syndrome/fluoroquinolone associated disability (FQAD). Please keep in mind that this is one of many hypotheses, and it is just one among about a dozen possibilities (you can read about some of the other possibilities on the post What is Fluoroquinolone Toxicity, or through the free ebook Hacking Fluoroquinolones.)

Hypothesis:

Fluoroquinolones damage the dura (dura mater)–the layer of connective tissue that surrounds the brain and spinal cord and keeps spinal fluid around those vital organs. This leads to spinal fluid leakage, which leads to many symptoms of fluoroquinolone toxicity, including:

  • Headaches (Including chronic migraines)
  • Autonomic nervous system dysfunction including POTS (postural orthostatic tachycardia syndrome) symptoms
  • Nausea and/or vomiting
  • Ringing in the ears (tinnitus) and hearing changes
  • Neck pain and stiffness
  • Radicular pain
  • Memory and cognitive problems (and other “neurolgic weirdness”)
  • Fatigue
  • Tachycardia (Racing heart/heart palpitations)
  • Dizziness (especially upon standing)

This wonderful lecture by Dr. Ian Carroll describes how cerebrospinal fluid leaks can lead to symptoms of many illnesses, including “mysterious” diseases like POTS, ME/CFS, fibromyalgia, as well as heart palpitations and severe headaches.

I suggest that you watch the entire video, as well as Dr. Carroll’s other videos on youtube. Here are some notes/highlights from the video above:

  • Many symptoms of POTS are actually cerebrospinal fluid leaks
  • The spinal cord is surrounded by tissue called the dura, and the dura holds cerebrospinal fluid around the spinal cord and brain. It’s like a water-tight bag that holds in cerebrospinal fluid and maintains pressure.
  • What causes people to have cerebrospinal fluid leaks?
    • Messed up connective tissue
      • From connective tissue disorders like ehlers danlos syndrome
      • (From fluoroquinolones???)
    • Something calcified and boney sticking into the dura
      • Bulging discs
    • Iatrogenic damage
      • Lumbar punctures
      • Epidurals
      • Back surgery
    • Car accidents (and other types of jarring, high-speed accidents)
      • Whiplash
  • How do you know if you have messed up connective tissue?
  • Calcium spikes sticking into the dura are difficult to detect via MRI, but they are clearer with a ct myelogram.
  • “Neurologic weirdness” is a sign of cerebrospinal fluid leaks. If someone is more confused later in the day, that can be an example of neurologic weirdness that results from a leak.
  • Cerebrospinal fluid leaks are misunderstood and under-recognized.
    • Post-puncture cerebrospinal fluid leaks are recognized.
    • Longer term cerebrospinal fluid leaks are less recognized and they present differently.
  • Post Dural Puncture Headache (PDPH) vs. Spontaneous Leak
    • Post Dural Puncture Headache (PDPH)
      • Single leak, orthostatic headache, 90% response to single EBP, Natural history understood and mostly benign, rarely mysterious, young women most at risk, fixable.
    • Spontaneous Leak
      • 30-40% multisite leak, late day headache, exertional headache, non-orthostatic CDH, 30% response to single EBP, natural history poorly understood and marked by chronic disability, often mysterious, HDCT, fixable.
  • There are people out there who have cerebrospinal fluid leaks that aren’t being recognized. Many people with cerebrospinal fluid leaks are misdiagnosed. Cerebrospinal fluid leaks are fixable and it is a shame that they aren’t all being recognized.
    • Cerebrospinal fluid leaks are NOT RARE.
  • Symptoms of cerebrospinal fluid leaks:
    • Headache, nausea and/or vomiting, ringing in the ears and hearing changes, neck pain and stiffness, radicular pain, neurological weirdness, fatigue
  • The effects of cerebrospinal fluid leaks on the pituitary gland
    • The pituitary gland is enlarged (How does this affect hormones???)
    • The connection between the pituitary gland and the brain can be disturbed, and this can lead to hormonal disruptions. High prolactin is an indicator of this problem.
  • Cerebrospinal fluid leaks can cause sagging of other parts of the brain.
  • MRIs of people suffering from cerebrospinal fluid leaks often appear normal. They are subtle and most doctors aren’t trained to see them.
  • Treatment of cerebrospinal fluid leaks
    • Epidural blood patches (Dr. Carroll describes how they’re done)
  • Cerebrospinal fluid leaks are NOT RARE, they’re just misdiagnosed and under-recognized

Before I watched Dr. Carroll’s lecture, I knew that cerebrospinal fluid leaks were painful and debilitating, but I didn’t realize that they were connected to “mysterious” disease symptoms or autonomic nervous system damage.

Connecting cerebrospinal fluid leaks to fatigue, a racing heart, blood pressure and blood sugar irregularities, tinnitus, cognitive and memory problems, hormonal abnormalities, etc. establishes a plausible connection between the (well-established) connective tissue damage done by fluoroquinolones, and the array of chronic, mysterious, disease symptoms that people with fluoroquinolone toxicity suffer from. Perhaps fluoroquinolones cause an array of debilitating chronic, mysterious illness symptoms through damaging the dura and allowing cerebrospinal fluid to leak–which leads to multiple symptoms of fluoroquinolone toxicity (and other chronic illnesses). It certainly seems like a plausible hypothesis to me. It actually seems like an easier hypothesis to postulate and prove than many of the other hypotheses regarding fluoroquinolone toxicity that have been put forth. As I noted above, the damage that fluoroquinolones do to connective tissues is well-established and recognized, and if someone looked at the effects of fluoroquinolones on dura mater tissue specifically, this hypothesis would be easily testable.

Some additional evidence supporting the possible connection between fluoroquinolones and cerebrospinal fluid leaks comes from the large number of people in cerebrospinal fluid leak support groups that have taken fluoroquinolones in the past who assert that fluoroquinolones contributed to their cerebrospinal fluid leak. I know that asking people in facebook support groups doesn’t count as a scientific study, but (to the best of my knowledge) no scientific studies of the link between fluoroquinolone use and cerebrospinal fluid leaks has been done, and the testimonials of the people who have cerebrospinal fluid leaks are important–they point both researchers and fellow patients toward research that may provide answers.

I also find it to be interesting that cerebrospinal fluid leaks affect the pituitary gland, which affects hormone production and regulation. Many people with fluoroquinolone toxicity syndrome have hormonal problems–from tanked testosterone to thyroid abnormalities. Maybe fluoroquinolones cause damaged dura tissue, which causes cerebrospinal fluid leaks, which causes pituitary gland structural abnormalities, which causes hormonal dysregulation, which causes multi-symptom chronic illness symptoms.

Dr. Carroll’s hypotheses and observations are fascinating and exciting for those who are dealing with fluoroquinolone toxicity and other multi-symptom, chronic, mysterious illnesses. I hope that they are explored further. Dr. Carroll’s results with patients are incredibly promising, exciting, and hopeful for people who are suffering from multi-symptom, chronic, mysterious illnesses–including those suffering from fluoroquinolone toxicity. I hope that Dr. Carroll, or other clinicians or researchers, look into the connections between fluoroquinolones and chronic cerebrospinal fluid leaks. It’s possible that the connections could lead to a comprehensive theory of fluoroquinolone toxicity, and may also lead to breakthroughs in other chronic illnesses.

Citations:

Musculoskeletal Complications of Fluoroquinolones: Guidelines and Precautions for Usage in the Athletic Population. Hall, Mederic M. et al. PM&R , Volume 3 , Issue 2 , 132 – 142

Etminan M, Forooghian F, Brophy JM, Bird ST, Maberley D. Oral Fluoroquinolones and the Risk of Retinal Detachment. JAMA. 2012;307(13):1414-1419. doi:10.1001/jama.2012.383

Lee C, Lee MG, Chen Y, Lee S, Chen Y, Chen S, Chang S. Risk of Aortic Dissection and Aortic Aneurysm in Patients Taking Oral Fluoroquinolone. JAMA Intern Med. 2015;175(11):1839-1847. doi:10.1001/jamainternmed.2015.5389

Adel Alrwisan, Patrick J. Antonelli, Almut G. Winterstein; Quinolone Ear Drops After Tympanostomy Tubes and the Risk of Eardrum Perforation: A Retrospective Cohort Study. Clin Infect Dis 2017; 64 (8): 1052-1058. doi: 10.1093/cid/cix032

 

Meditation Retreat

I spent last weekend at the Shambhala Mountain Center doing a meditation retreat. It was a lovely get-away and I recommend it to anyone who is interested in that sort of thing.

As those who have read my story know, meditation was a key part of my healing process. Meditation helped me to heal from both the mental and physical aspects of fluoroquinolone toxicity. It helped to relieve my anxiety, and stopping the cycle of anxiety was necessary for me to heal. When I meditate my digestion is better, and I can even feel my GI tract operate more efficiently. (Maybe that’s just a feeling and not objective reality, but it is possible that meditation is helping to tone my vagus nerve and support my autonomic nervous system, and thus actually improving my digestion.) I sleep better when I meditate. My concentration and creativity improve when I meditate. Meditation also helped me to emotionally and spiritually come to terms with getting sick. It helped me recognize my strength and resilience so that I could get through the fluoroquinolone toxicity journey.

Meditation is simultaneously simple and difficult. On the surface, it’s just sitting and being. But when you do it, it’s actually quite difficult. It’s difficult to just BE, without the distractions that are constantly bombarding us.

The retreat that I just returned from focused on loving kindness. We all need loving kindness in our lives. Floxies are especially in need of loving kindness as many things that they value–health, relationships, a pain-free life, sleep, money, etc.–are stolen from them by fluoroquinolone toxicity. When those things disappear (or seem to disappear), it is easy to let shame, fear, anger and meanness build up. Meditation helps to dissipate shame, fear, anger and meanness–and focuses energy back on patience, love, kindness, forgiveness, etc.

My favorite advice from the retreat included:

  • If gentleness and loving kindness don’t work, try more gentleness and loving kindness.
  • Try not to be too focused on / attached to outcomes.
  • There is grace in every moment–even the horrible ones.

They’re important, and valuable, things to remember.

For those who aren’t able to do a retreat away from home, The Urban Monk is offering a free 7-day Reboot Program.

UrbanMonk7DayReboot

According to The Urban Monk, Pedram Shojai,

Over the next 7 days you will:

  • Get more energy from your food and burn fat all day…
  • Generate 10X more power in your body…
  • Create a ‘force field’ shielding you from stress…
  • Learn to stop time and drink from infinity…
  • Detox your body and soothe away anxiety with high quality sleep…
  • Tap into an unlimited source of hidden energy available to each one of us…
  • Gain extra clarity, focus and powerful intention…

Hopefully it can help you to heal physically, mentally, emotionally and spiritually from aspects of fluoroquinolone toxicity too.

I recommend meditation to all my Floxie friends. If you can go on a retreat, please do. If you can do the 7-day Reboot, it’s a great place to start too.

I can’t guarantee healing from meditation, but it’s certainly a good thing to try.

 

flu tox get help you need banner click lisa

Treating Fluoroquinolone Anxiety

Free-floating, often severe, anxiety is a common symptom of fluoroquinolone toxicity.

Fluoroquinolones thoroughly mess up GABA neurotransmitters, and GABA “plays the principal role in reducing neuronal excitability throughout the nervous system.”  Here are a few articles that describe how fluoroquinolones negatively affect GABA – Article 1, Article 2, Article 3.

To put what fluoroquinolones do to GABA neurotransmitters into a framework, they basically throw people into protracted benzodiazepine withdrawal.  People who have gone through benzodiazepine withdrawal at any time in life should NEVER take a fluoroquinolone.  See “Benzodiazepine tolerance, dependency, and withdrawal syndromes and interactions with fluoroquinolone antimicrobials” for more information about how fluoroquinolones affect people who have a history of benzodiazepine use and withdrawal.

The things that help people through protracted benzodiazepine withdrawal may be helpful for floxies too.  GABA neurotransmitters and receptors have been iatrogenically damaged by both drugs, and they need to heal.  From what I understand, the Ashton Manual has a lot of good information in it about healing from benzodiazepine withdrawal.  Support sites like www.benzobuddies.org may also be helpful.

A very interesting review of supplements to treat anxiety (specifically benzodiazepine induced anxiety, but the advice is applicable to floxies too) can be found through this link –

http://www.longecity.org/forum/topic/54028-treating-anxiety-safely-effectively/

Additionally, Ruth has researched and written extensively about fluoroquinolone induced anxiety and I suggest reading her story – https://floxiehope.com/ruths-story-cipro-toxicity/ and listening to her podcast – https://floxiehope.com/2015/01/07/the-floxie-hope-podcast-episode-6-ruth-young/.  She also wrote some very interesting and insightful comments on my story starting about June 9, 2015 – https://floxiehope.com/lisas-recovery-story-cipro-toxicity/comment-page-13/#comments.

Ruth mentions supplementing uridine in her story:

I also have found that uridine works really well when I get that horrible insomnia and nothing else is helping. Uridine has it’s own receptors in the brain, so maybe it is a way floxies can bypass GABA receptor damage. I cannot prevent a relapse with it. I take it after the relapse starts, 500-750 mg with a fish oil capsule to help it work better. It’s something to have in reserve for those times you just want to crawl out of your own skin and you need to get some rest. Taking it every day did nothing for me. It has to be timed just right, at the moment that every time I’m starting to fall asleep symptoms are getting more intense and now I’m standing there by my bed with my skin just burning, knowing I am not going to sleep. A couple uridine and I’m out within thirty minutes.

It has recently come to my attention that uridine helps to reduce epileptic seizures and that increases free GABA, thus it has a calming influence. I have found it to be useful.

The things that helped me to get through cipro-induced anxiety are: 1. Acupuncture, 2. Meditation, 3. Stress reduction – especially flox related stress – that meant getting off the internet.

I went through a recent period of pain that induced anxiety. Kava helped me a lot. The longecity article recommends against kava, and I think that their concerns are valid. It is only for short-term use and it probably isn’t best for people who have had a history of benzo withdrawal. Personally, I’ve never had a benzo and I only needed to use kava for a short period of time.  It was a life-saver during the time I used it. Be careful with it though.

There is a vicious cycle when it comes to fluoroquinolone toxicity symptoms and anxiety.  Fluoroquinolone toxicity symptoms lead to stress and anxiety (it’s a pretty reasonable to be stressed and anxious when you’re suddenly in pain, you can’t move but when you do you tear tendons, you lose your memory, and suffer from chronic insomnia – to name just a few symptoms of fluoroquinolone toxicity), stress and anxiety negatively affect the autonomic nervous system (ANS) and lead to dysautonomia, ANS damage leads to more fluoroquinolone toxicity symptoms, which leads to more stress, and so on, and so on.

I don’t think that fluoroquinolone toxicity is “just” anxiety, but I do think that anxiety makes every symptom of fluoroquinolone toxicity worse.  I also think that there is nothing to be trivialized about anxiety.  It’s not a choice.  It’s the central and autonomic nervous systems going completely hay-wire, and both stress and anxiety can lead to serious health problems.

I know that anxiety makes you not want to do these things, but I also suggest trying really hard to do the simple things that make you healthy and happy. Sleep plenty. Enjoy your food. Laugh a lot. Be social. Hang out with a pet and/or children. Those things are healthy and they are healing. They’re easier said than done, but they’re certainly worth a try.

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In my opinion, it’s imperative for floxies to get stress and anxiety symptoms under control.  Neither stress nor anxiety are easy things to control, and, like I said earlier, it’s not a choice – it’s GABA neurotransmitter damage – but anything that can be done to reduce stress and anxiety will help the GABA neurotransmitters to heal, and will help the ANS and CNS to normalize.

Fluoroquinolone induced anxiety can be crawl-out-of-your-skin horrible, but it does get better.  Hang in there, my friends.

 

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Hacking Fluoroquinolone Toxicity via the Nervous System

I recently read Hacking the Nervous System, about how vagus nerve tone is connected to chronic illness.

The vagus nerve is a huge nerve that connects the brain to the various organs throughout the body. Our autonomic nervous system (ANS) is controlled via the vagus nerve. It connects the digestive tract to the brain and when you feel butterflies in your stomach, that feeling is traveling from your stomach to your brain via your vagus nerve. Breathing and heart rate, as well as other ANS functions, are controlled through the vagus nerve.

The brain coordinates ANS functions using the vagus nerve, and how smoothly those functions are being coordinated is referred to as the “tone” of the vagus nerve.

Hacking the Nervous System goes over the hypothesis that inflammation is related to vagal nerve tone, and that vagal nerve tone has a lot to do with chronic, multi-symptom illnesses, like autoimmune diseases. I wonder if vagal nerve damage has something to do with fluoroquinolone toxicity, and I wonder if things that improve vagal tone can help floxies to heal. I suspect so on both counts.

Vagal nerve tone is important, and “Research shows that a high vagal tone makes your body better at regulating blood glucose levels, reducing the likelihood of diabetes, stroke and cardiovascular disease. Low vagal tone, however, has been associated with chronic inflammation.”

Little is known about how vagal tone relates to health. One of the scientists interviewed for Hacking the Nervous System stated, “We don’t even know yet what a healthy vagal tone looks like.” They are looking into it though, and vagal nerve stimulating implants are being used in clinical trials. (Read Hacking the Nervous System for more information about the implants.)

Improving Vagal Tone

Things that are less drastic and invasive than a vagal nerve stimulating implant can improve vagal tone. For example, meditation can improve vagal tone. “Those who meditated showed a significant rise in vagal tone, which was associated with reported increases in positive emotions. ‘That was the first experimental evidence that if you increased positive emotions and that led to increased social closeness, then vagal tone changed,’ Kok says.”

To drastically oversimplify a complex process, things that make you feel good, socially connected, happy, relaxed, etc. improve vagal tone. Conversely, stress and trauma decrease vagal tone. Many things that helped me through my fluoroquinolone toxicity journey were things that are purported to improve vagal tone – meditation, healing arts (e.g. dancing and music), mindfulness, acupuncture, chiropractic, and eliminating stressful stimuli from my life (e.g. getting off the internet). An article in Psychology Today, “How Does the Vagus Nerve Convey Gut Instincts to the Brain?” notes that, “Using positive self-talk and taking deep breaths is a quick and easy way to engage the vagus nerve and parasympathetic nervous system to calm yourself from both the top-down and from the bottom-up.”

Additionally, exercise also improves vagal tone. Playful exercise is best, but regardless, movement is good for vagal tone.

Vagal Tone and GABA Neurotransmitters

A decrease in vagal tone may be connected to damage to GABA neurotransmitters. The article in Psychology Today, “How Does the Vagus Nerve Convey Gut Instincts to the Brain?” notes that, “The most exciting discovery of this study is that under closer scrutiny of the rats’ brains, the researchers found that the loss of signals coming up from the abdomen via the vagus nerve altered the production of both adrenaline and GABA in the brain.” The article Selective antagonism of the GABAA receptor by ciprofloxacin and biphenylacetic acid published in the British Journal of Pharmacology noted that, “Ciprofloxacin (10–3000 μm) inhibited GABAA-mediated responses in the vagus nerve with an IC50 (and 95% CI) of 202 μm (148–275). BPAA (1–1000 μm) had little or no effect on the GABAA-mediated response but concentration-dependently potentiated the effects of ciprofloxacin by up to 33,000 times.” Let me highlight and reiterate: BPAA, which is a derivative or an NSAID, potentiated the harmful effects of ciprofloxacin on GABA receptors by up to 33,000 times. (WHOA!).

The ANS dysfunction that many floxies experience is likely connected to vagal nerve health, as the ANS is controlled via the vagus nerve.

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A Hypothesis for Fluoroquinolone Toxicity

A possible hypothesis for fluoroquinolone toxicity is that people who get floxed have an underlying, dormant hiatal hernia (they’re pretty common) that is exacerbated by the FQ and the massive amount of oxidative stress induced in the gut by the FQ. The hiatal hernia irritates the vagus nerve and triggers ANS dysfunction that is self-perpetuating. The damage to the vagus nerve also alters the production of neurotransmitters, especially GABA, and hormones.

It’s possible, and I believe that the vagus nerve is a big part of the FQ toxicity puzzle. However, please know that I have not found much scientific research to support this hypothesis. Also, other possible causes for fluoroquinolone toxicity mentioned in the post, What is Fluoroquinolone Toxicity? have more supporting evidence supporting. However, all of these causes are not mutually exclusive, and may all play a role.

Measuring Vagal Tone

In Hacking the Nervous System it is noted that:

The strength of your vagus response is known as your vagal tone and it can be determined by using an electrocardiogram to measure heart rate. Every time you breathe in, your heart beats faster in order to speed the flow of oxygenated blood around your body. Breathe out and your heart rate slows. This variability is one of many things regulated by the vagus nerve, which is active when you breathe out but suppressed when you breathe in, so the bigger your difference in heart rate when breathing in and out, the higher your vagal tone.”

Another term for the relationship between breath and heart rate is respiratory sinus arrhythmia breathing (RSA breathing). I found the following passage from A Headache in the Pelvis to be interesting:

RSA breathing is a description of the relationship between heart rate and breathing and refers to the heart rate varying in response to respiration. RSA is a phenomenon that occurs in all vertebrates. You can experience the phenomenon of RSA by taking your pulse and noting that when you breathe in, the heart rate increases slightly and when you breathe out the heart rate decreases slightly. There is considerable research that indicates that when there is balance and health, the heart rate and the breath move robustly together as inhalation occurs, heart rate increases as exhalation occurs, heart rate drops.

Under circumstances of mental or physical disease the relationship between breathing and heart rate is disturbed. When individuals suffer panic attacks for instance, RSA is lower and disturbed. When they recover from panic disorders their RSA breathing becomes stronger, more balanced, and robust. The higher and stronger the heart rate variability is in relationship to appropriate respiration, the higher is the general level of health and well being. For example healthy children generally have very robust RSA breathing in which the heart rate can sometimes vary 40 beats or more between inhalation and exhalation.

Reduced RSA is thought to be an indicator of an adverse prognosis for people with heart disease. Generally disturbed RSA is indicative of early problems in the healthy functioning of the autonomic nervous system as it relates to a number of diseases. It has been suggested that one measure of the therapeutic effect or safety of a drug is whether it positively or negatively affects RSA.” (emphasis added).

Vagal tone and RSA breathing are either one and the same, or, at the very least, highly related. As doctors Wise and Anderson note in A Headache in the Pelvis, the effects of pharmaceuticals on RSA (or vagal tone) should be measured and noted, and those drugs that have deleterious effects on RSA should only be taken in extreme circumstances. The effects of fluoroquinolones on RSA breathing and vagal tone are unknown.

Coordinating Breathing with Heart Rate

I’m a huge fan of breathing exercises for health. The post Breathing Exercises for Health goes over some thoughts on breathing exercises for floxies. The easiest breathing exercise that I use is just saying, “OM” – take a deep breath in and let it out slowly while singing/chanting/groaning “OM.”

To get my heart and breath regulated, I took a Chinese herb called Suxiao Jiuxin Wan. It’s supposed to improve heart qi. (Heart qi? What? I’m not sure of this, but I suspect that “heart qi” is related to vagal nerve tone, but people who know more about this can either prove or disprove this notion.) Suxiao Jiuxin Wan has been shown to help people with angina and it calmed my racing heart dramatically. I’m not a doctor or Chinese herb specialist, so please do your own research, but it helped me immensely.

Conclusion

Fluoroquinolone toxicity is an incredibly complex disease with many facets. Is the nervous system involved? Absolutely. Is the vagus nerve involved? Almost certainly. But, unfortunately, not much research has been done on how fluoroquinolones relate to either the vagus nerve specifically or the nervous system generally.

Improving vagal tone has multiple health benefits for floxies and non-floxies alike. Most of the things that can be done to improve vagal tone are pretty simple and inexpensive. Meditate – be socially connected – exercise – do breathing exercises – minimize stress – think positively. None of those are magic bullets, they’re all processes and practices. They’re all good for you, free, and certainly worth a try.

 

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Lisa’s Update

One Year Update Pic

I wrote my recovery story about a year ago. A lot changes in a year, so I thought I’d write an update.

I was pretty well recovered when I wrote my story. In most areas, I was about 95% of my pre-flox capacity. I could do most of the physical and mental things that I needed and wanted to do to with relative ease. I could walk, hike, do pilates, swim, dance, work, have good conversations with my friends, maintain relationships, etc. I was healthy enough and life was good. I would have felt fine about staying in the condition that I was a year ago indefinitely.

It has been a nice surprise that I have continued to get better. Little things have improved/gone back to how they were pre-flox.

I started sweating again. I was kind of enjoying not sweating, but it’s good to have that part of my autonomic nervous system working normally again.

I stopped being cold all the time. I had a hard time feeling warm for a long time after taking cipro. Sometime in the last year my body has gone back to its normal – being “hot blooded” (I’m Swedish).

I feel like I felt pre-flox when drinking coffee and alcohol. It’s difficult for me to describe how I felt different after having caffeine or alcohol while I was sick – but it just felt different – and now it feels normal again.

I went through a period of nausea in the last year. For a couple of months, I couldn’t eat without feeling nauseous. I’m not sure if the nausea was because of a break-up that I went through right before it started (lots of people don’t eat for a while after a break-up), if it was a floxing symptom, or if it was a combination – my digestive tract shuts down now when I go through a period of stress. Whatever the source, it went away when I started supplementing hydrochloric acid (HCL – stomach acid).

I also had some issues with feeling a tightness in my chest that went away when I started supplementing HCL.

My mental capacity is as good as it was before I got floxed. It may even be better than it was pre-flox. I had no interest in biochem before I started researching how fluoroquinolones work – now I read biochem articles for fun, and they’re making me smarter. Also, my writing has gotten better – which is nice.

My energy, endurance, flexibility and strength have continued to improve. It’s difficult to tell if I am capable of as much physical activity now as I was before I got floxed for a couple of reasons. First, I am a bit out of shape. I have an office job so I sit for 8 hours a day. That’s not good for anyone’s physical fitness. Getting floxed certainly didn’t help, as it left me completely sedentary for a while and semi-sedentary for a while after that. Second, I was in really excellent physical condition before I got floxed. I’m not sure how fair it is to compare myself to how I was 2.5-3.5 years ago because I was really fit at that point in my life. Anyhow, those are details. My point is that I’m doing well physically. I can keep up with my boyfriend (who has never touched a fluoroquinolone) while hiking, swimming, etc.

I still struggle a bit with my motivation. I felt like cipro stole my “give a damn.” I’m very passionate about exposing the dangers of fluoroquinolones, and about helping people through fluoroquinolone toxicity, but I still struggle to “give a damn” about other areas of my life. It’s getting better though.

My level of fearfulness has subsided over the last year. (It had actually improved tremendously a year ago when I wrote my story – it was horrible when I first got floxed – I was terrified.) It has taken a long time for me to convince myself that this isn’t going to kill me. I can’t say that the fear about the consequences of the cellular damage done is completely gone. But I can say that I feel good right now. It’s not going to kill me today. Today, I’m doing well.

Diet – I am not on any specific diet. I avoid junk food but other than that, I eat whatever. Food does affect how I feel, but I don’t think that it affects how I feel any more than it did before I got floxed.

Supplements – I’ve switched out my supplements a bit. I still take iron (Pur Absorb 5 mg/day) and I still think that it helps me a lot. I also think that magnesium (250 mgs. Chelated mag/day) helps me. Lecithin helped to clear my brain fog. Hydrochloric acid (HCL) helped to get rid of my nausea and heartburn. I also take a fish-oil supplement, chlorella, glucosamine, vitamin D3, vitamin K2, coenzyme Q10 and a probiotic.

Food Supplements – These supplements are actually food, so I’m putting them into a different category from the supplements. I think that all of them have helped me a lot. Brewer’s yeast – it’s full of B vitamins, amino acids, trace minerals and has things like uridine and iodine in it that are helpful. I think that brewer’s yeast has helped me a lot. Cod liver oil – full of good fats. Raw crushed garlic – for the thiamine and other nutrients. Beets – they make me feel better (nitric oxide??) – do NOT get scared when you pee/poo purple after eating beets.

Exercise – I still find pilates, swimming and walking to be very therapeutic. I haven’t been as diligent in sticking with them this year as I was the year before.

Meditation – I still think that meditation is a wonderful thing for everyone to do. I have gotten horribly lazy about doing it myself.

Acupuncture – I go to my acupuncturist about once a quarter now. I was going at least once a month previously.

Staying off the internet – I’ll give myself a big fat F- on this one. Being involved in floxie stuff over the internet doesn’t induce anxiety for me any more though – so I don’t think that it’s unhealthy for me that I concentrate on it too much.

Having a positive attitude – I think that I’m still doing pretty well with this one. It has been wonderful and touching to have a group of positive people commenting on this site – letting their fellow floxies know what they know – and everyone encouraging each other and having faith in the notion that this too shall pass. I thank everyone who has supported a floxie through their time of need with a positive attitude and/or words of wisdom.

As I have gotten healthier and healthier, I have become less diligent about doing the things that helped me to get to a place of health. It would probably be better for my continued health if I was more diligent about sticking with them. Oh well. I think that it’s relatively normal to get lazy about doing the things that you did to get healthy once you have reached a point where you feel healthy enough.

I consider myself to be 99-100% recovered.

I am very, very, very lucky.

I wish luck, healing and recovery for all of you! I know that a complete recovery is not possible for everyone, and, well, read this about partial recoveries – https://floxiehope.com/2014/03/05/redefining-recovery/. I like the quote at the end of it, “Healing doesn’t mean the damage never existed. It means the damage no longer controls our lives.” If a full recovery isn’t possible, I wish you a recovery in which the damage no longer controls your life.

I am incredibly grateful for everything that I have gained in the last year. This site has reached more people, and touched more lives, than I could have possibly imagined a year ago. More people have read, and cared about, my healing story than I ever could have imagined. I hope that it has helped you. I hope that this follow-up, letting you know that the improvements have continued for me, give you even more hope for your own healing.

Xoxo

-Lisa

 

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