There’s recently been recognition in the “forward thinking” Mast Cell Activation Syndrome (MCAS) doctors that mast cells have some type of communication with the nervous system. And this communication also seems to be occurring for long haul COVID patients. This communication appears to create the symptoms of anxiety, gastrointestinal issues and itchy skin, and may create other symptoms also.
As a patient with an MCAS diagnosis, and as a mother of a patient with a long haul COVID diagnosis, I can say that the nervous system is DEFINITELY affected by both of these conditions.
The autonomic nervous system is a complicated mechanism, and I’m certainly no expert. What I understand is that there is a sympathetic nervous system, which activates our bodies into fight or flight. This saved us from being eaten by a tiger many thousands of years ago, and is certainly necessary, but we don’t want it working all the time. Then there is the parasympathetic nervous system, which activates our bodies to rest and digest. We want a balance between these two systems.
My experience with MCAS is that the parasympathetic nervous system is no longer activated the way it should be, and my sympathetic nervous system is constantly overstimulated. Everything my nervous system comes in contact with is perceived to be a tiger – pollens, food, smells, etc. And my parasympathetic nervous system gets drowned out by all this overamping so that I have trouble digesting foods and getting a good night’s sleep.
In the short run, this isn’t a bad thing to have the sympathetic nervous system working hard. When we all lived with the danger of a tiger eating us, we wanted our nervous system to be highly responsive, to get us moving. Now, an argument with a family member shouldn’t stimulate the same response. Yet, when your nervous system can’t distinguish the immediate danger of a tiger from a kitten, the entire nervous system goes out of balance. And that is bad news for your body, especially when this imbalance lasts for days, months or years.
Mast cells are part of our body’s protection against viruses and bacteria, and are also stimulated during an allergic reaction to release many chemicals. From what I’ve been told, mast cells are in the layers of the gut and skin very close to the nerves, so it’s not surprising that there would be communication between mast cells and the nervous system. There’s been interesting research on the Significance of Conversation between Mast Cells and Nerves.
While there is very little research currently on long haul COVID, my daughter’s experience is that not only are her mast cells activating but she’s also having issues related to a dysregulated nervous system, such as dizziness upon standing, a fast heart rate and extreme anxiety.
So how does HeartMath figure into all of these nervous system issues? HeartMath is an app to allow you to view your inner emotional state based upon your heart rate and coherency. A Bluetooth device attaches to your earlobe to monitor your heart rate variability and guide you toward inner calm through real time feedback.
If you are a follower of Dr. Joe Dispenza, he has been touting HeartMath for the better part of the last decade as a way to create the healthy vision you want in your life.
If you’d like to see a demonstration of HeartMath and the way to breathe to get the best results, watch this. (This video also includes information about how this type of breathing is helpful for treating long haul COVID).
I have found that there are times of the day when it’s really difficult for me to sit down and focus on my breathing. If I’d had a busy day at work, the transition into a calm breathing pattern is definitely needed, but sometimes quite difficult to maintain! However, I have been continuing to practice for 10 minutes a day, twice a day. I am certainly seeing results such as better sleep, more balance of my emotions and less anxiety overall. In other words, my parasympathetic nervous system is coming into balance!
For my daughter, she found that she has had to start small to not overwhelm her nervous system. Yes, even deep breathing can upset a very anxious body! If your nervous system is really overamped, you may need to start with just putting the Bluetooth device on your ear and breathing normally for several sessions before adding the deep abdominal breathing. The feedback from the app will communicate with you by sight with various colors and waves visible, but also by auditory dings. This helps your brain to know what it needs to do to “breathe better” and to create more calm.
I want to provide my body the best chance for healing, and if I can do so without medication and get good results, that’s amazing! There are HeartMath practitioners around the country that can assist you with getting all the information you need to get started on this. Or you can just purchase the Bluetooth device, load the app and proceed forth yourself. Either way, feeling calmer and less anxious will be your reward.
PS – I am not being compensated by HeartMath for this blog post. It is solely based upon my own and my daughter’s experience.
The ongoing saga of long COVID for my daughter, Michaela, continued into April 2022. Two prior blog posts on this topic are here (first) and here (second). She tried Benadryl, Pepcid, Zyrtec and Ketotifen along with Chinese herbs and creams, and each of them created more issues for her: vertigo, shaking, nausea and temperature extremes in her body. She decided to give up even trying to incorporate them into her healing routine.
She was experiencing so many symptoms that we realized that one doctor wasn’t going to be able to diagnose everything, nor provide a solution. The thought of her having to go to a cardiologist for the heart palpitations, an endocrinologist for her menstrual cycle issues, a neurologist for the brain fog, an ENT doctor for the dizziness and vestibular system, an allergist for the hives and mast cell activation symptoms, and an ophthalmologist for her vision issues was overwhelming. She didn’t have the energy to withstand so many doctor visits, nor the brain function to be able to make the appointments and then get herself to the doctor’s office without being able to drive. Yet she needed to do something, or she was going to continue to experience an array of issues that she had never had before with Mast Cell Activation Syndrome (MCAS).
My husband and I were doing searches online to help her find long-haul COVID groups (so that she might be able to speak with someone else experiencing what she was), dysautonomia groups, and any research that might be helpful for her to heal. We found that Western medicine doctors were prescribing medications that they hoped would work, which she couldn’t tolerate taking anyway, or sending patients to physical therapy, or sending them for more testing. We didn’t find anyone who had “the answer,” despite the fact that a few snake oil salesmen/doctors were out there peddling their “research”. A word of caution about that – given that Michaela and I have managed chronic illnesses for decades, we’re very attuned to doctors who claim to have all the answers that no one else has ever found. In general, we run in the other direction!
Because of her tenacity, Michaela got on the phone with Bright Health, her health insurance provider, and asked for help after telling them what she had been through with all of her symptoms and doctor visits that hadn’t provided her any help. She thankfully got a woman who listened, and provided her with the name of a physical therapist who she heard had some success with helping people with long-COVID. Michaela immediately called this new PT.
Dr. Dan Stoot of High Definition Physical Therapy was the first doctor to understand what Michaela was going through and willing to help her with specific exercises. He was working on research about long COVID with the University of Denver, and had been working with patients for almost 2 years at that point and having success. He spoke with her over the phone and provided her with his cell number to contact him with any questions before her first appointment. This was wonderful! When she went into his clinic to be evaluated, he turned off the lights and asked her to do simple tests so as not to activate her nervous system. This allowed her body to calm down enough for him to get an accurate assessment.
He said that several of the issues that Michaela was experiencing were centered within her brain stem, and told her that her symptoms were similar to a Traumatic Brain Injury. He also told her that he had seen all the symptoms she was experiencing in his long-haul COVID patients. This helped her to realize she wasn’t alone in this mess. She shared with him about her suicidal thoughts, which he had heard about from other patients. This helped her to feel calmer, and that there was hope for some healing.
He had her begin with eye exercises since her inability to look at computer screens and to drive were the two biggest issues she wanted to handle. That one hour appointment wiped her out for the rest of the day!
Her body was in such a state of overload that she was having trouble sleeping, or even getting her body to rest, and also having issues with having enough energy to make it through an evaluation appointment.
She began to listen to the audio book for Breath by James Nestor which helped her to learn new breathing techniques to calm down her nervous system. Since she wasn’t able to be on the computer to watch any videos or do any Google searches, audio books and paper books became her sole entertainment and means to educate herself.
She began reading voraciously about Traditional Chinese Medicine, Immunology, Massage, Acupressure, Shamanic Healing work, the Autonomic Nervous System, Dysautonomia, the Vestibular System, and Qigong – especially Zhineng Qigong which came out of a Medicine-less hospital in China that combines Buddhist principles, Daoist principles, Western Science, Kung Fu and Medical Qigong.
Michaela started to slowly practice some Wisdom Healing Qigong that I had been practicing for a few years, however this practice was too fast for her and she followed this instead. Wisdom Healing is a “branch” of Qigong that is similar to Zhineng Qigong. The slower practice I linked to is Zhineng Qigong. She found that when she practiced this, her body felt better. The energy started to integrate better and she was able to breathe easier. One of the practices is called “Lift Chi Up Pour Chi Down” which is a series of movements done very slowly and looks similar to Tai Chi. There is also a Sound Healing practice that Michaela incorporated from Wisdom Healing Qigong, however she was experiencing burning in her internal organs so badly that she only listened to this practice rather than doing the sounds herself. These two practices became her main focus for healing along with the eye exercises Dr Dan Stoot had given to her.
When she went back to see Dr. Dan for her second appointment, he couldn’t believe the amount of progress she had made. He told her none of his other patients made such progress in one week and asked what she was doing. She told him about her breathing exercises, Lift Chi Up Pour Chi Down and Sound Healing practices. She still had so many symptoms and issues occurring, but to know she had made progress gave her not only a boost of hope, but also a commitment to continue with Qigong.
We knew of a few local Qigong practitioners and asked them for suggestions of Zhineng Qigong teachers. Michaela began to pursue several Qigong practitioners across the world and began having conversations with them about what she was experiencing, and asking if they knew of anyone who had healed themselves from Dysautonomia. Each person she spoke with would give her little nuggets of wisdom, but the only person she found who had healed herself was Dr. Cynthia Li who wrote Brave New Medicine. Dr Li also incorporated Wisdom Healing Qigong into her own healing journey. Michaela had read her book, and reached out only to find that Dr Li wasn’t taking any new patients. That didn’t deter her. Instead, she continued her quest to find someone who could teach her more about healing herself.
By the end of April, Michaela began practicing Qigong and Sound Healing for a total of 3 hours per day, mainly because that’s the amount of time these practitioners said they practiced in order to achieve health after a serious medical issue. She was willing to do anything to get better.
Despite doing the eye exercises that Dr Stoot gave to her, Michaela’s eyes weren’t getting better enough for her to feel comfortable driving. Dr Stoot suggested that she go to a Neuro Ophthalmologist, however once again these doctors aren’t in any insurance network, and private pay was required. Instead, she saw a “regular” ophthalmologist about her vision issues. All of his testing showed there was nothing wrong with her eyes. While you certainly don’t want to wish for an ailment, it would have been nice to have some diagnosis for specifically what was going on!
She found a practitioner for Rapid Resolution Therapy (RRT) to begin to resolve her Medical PTSD and to decrease her overall anxiety. Michaela’s issues with the medical establishment needed to be overcome in order for her to be able to have blood draws where she didn’t end up in a panic attack. This therapy did help her anxiety to calm down, and it also provided the opportunity for her to be able to notice what she was thinking when her body and nervous system began to ramp up.
Michaela was continuing to have digestion issues, blood pressure issues, an inability to control her body temperature, and urinary problems. A Google search on various types of Dysautonomia came up with a diagnosis called Autonomic Neuropathy that included these issues and more. While she didn’t have a formal diagnosis for this condition, it was helpful to have a name to call the constellation of symptoms that she was experiencing. We noticed that many of her symptoms she was experiencing came back to the Autonomic Nervous System, and it was evident that her nervous system was not responding appropriately.
She has begun to see a Medical Qigong Doctor candidate in Denver, Dina Rifkin, who even comes to her apartment! Dina began to teach her specific moves to help a specific organ. This type of Qigong is different from what Michaela was practicing, in that Medical Qigong can work with healing specific medical issues. Dina has healed herself from several chronic illnesses, which was the kind of experience that Michaela was looking for, in addition to Dina’s knowledge about Medical Qigong.
The process has been VERY slow because Michaela’s body overreacts to any type of stimulation, even when it’s good for her. She is given a few exercises to do each day, and has had to restrain herself from being an overachiever and doing too many. She tried that a few times and overwhelmed her body into a detoxing mess.
She has continued to visit the Network Chiropractor to integrate the energy in her body, and that has definitely helped her nervous system to calm down. It has been wonderful for her to get out of her apartment once per week and also to come back home feeling calm.
Michaela has also begun to work with a Zhineng Qigong teacher, Reyna Lerma, to perfect her form with Lift Chi Up Pour Chi Down in order to get even more energy healing from Qigong.
As of this writing, she has been practicing 3 hours of Qigong daily for 80 days, and she has seen enormous progress:
No more heart palpitations
She can sleep a full night from 9:30pm to 6:30am (and she keeps on this schedule!)
No more blood pooling
No more hot and cold extremities
No more fainting
No more paralysis of limbs
No more suicidal thoughts
No more brain fog
No more flushing or hot flashes
She can use computer and phone screens to work, watch movies, search Google and be on Zoom
She’s able to work at least 3 hours a day with ample energy
Her menstrual cycle lasts 7 days instead of the entire month
She can also now sit outside under her favorite tree and enjoy the sun and the Rocky Mountain fresh air.
She still wants to heal these next items, and feels sure that they will heal as she continues her pursuit of Qigong practices and energy healing:
End the idiopathic hives
Heal her gut so that she can eat a wide variety of foods again
Cease the eye issues so that she can drive
Be completely rid of organ burning/buzzing feelings
Have enough energy to work as much as she wants!
I will keep you updated with her progress. The amount of healing that she has experienced surpasses anyone that she has spoken to on social media in the various groups for long-haul COVID or Dysautonomia. Her goal in this quest to heal herself is to not just manage these many complex symptoms but truly heal the cause which created these symptoms in the first place. And then to share her experiences with anyone who is interested.
She has yet to meet anyone else who is using Qigong to heal themselves from these conditions or long-haul COVID, but this may become the only modality that can truly provide relief for the millions of people suffering and looking for a way to get back to their life!