Facing life with Mast Cell Activation Syndrome (MCAS) is a daily challenge for most patients. Adding some type of medical procedure to that daily challenge can feel truly daunting. Yet sometimes we have to have a cavity filled, have a preventative colonoscopy or have surgery. At these times, good preparation will help the procedure go more smoothly.

I’ve had an MCAS diagnosis for almost 2 decades, and I’ve faced all kinds of medical procedures, and I’ve learned what has worked well for me; however, I want to caution that each of us individually needs to determine what works best for us in these situations.

In my doctor’s attempt to figure out what was wrong with me when I first started exhibiting symptoms of no longer being able to eat certain foods, having acid reflux and stomach aches, my GI doctor sent me to have a CT scan. At that time, I had no idea I had MCAS, and had the CT scan done with contrast, meaning I swallowed a liquid with dye (the dye can also be injected via IV). I began feeling hot and nauseous and chalked it up to the nasty tasting formula. For the next several days, I felt like I was sick. Only after being diagnosed with MCAS was I told to never again get any type of test with dye injected or swallowed as this was a major trigger for most patients with MCAS. I was having an allergic reaction to the dye, and didn’t realize this was making my MCAS symptoms worse and not helpful to me at all. And it turned out the CT scan was normal!

The Mast Cell Disease Society has a document called Emergency Room Response Plan that is not only fillable for your particular details and gives details of medication an ER staff should use for a reaction, but it also delineates what medications you should stay away from. They also have a list of triggers here. I have learned to NOT rely on medical personnel, even in the ER, to know what MCAS is or what can trigger activation. I have to know what my triggers are, and how best to educate others as to what I can and cannot be given medically. This includes foods, medical procedures, and medications.

I have had cavities filled without a problem, and lidocaine works well for me. However I know of people with MCAS who cannot stand the vibration and the noise caused from the drill. And for some people, anxiety around going to a dentist can create enough stress that mast cells begin to activate.

Stress around a potential medical procedure needs to be well managed. Many of us have years of seeing doctors who tell us our symptoms are all in our heads, or we’ve been given an array of tests that make us sicker and we trial medications that we react to. It’s easy to see why we become stressed out with a potential medical procedure. We’ve had so many negative experiences, and we don’t want another bad situation to occur. I’ve found that explaining to my doctor my past experiences of what has worked well to be helpful. And I make sure the doctor knows exactly what I’m allergic to, and what drugs to stay away from. Most of the time I have to explain what MCAS is, and I’ve had doctors tell me there is no such thing. If they say that, then I know to go shop for a new doctor!

In the early years of trying to get a diagnosis, I had multiple endoscopies and colonoscopies. My GI doctor felt it was important to keep my body calmed down during these procedures and he would give me IV Benadryl before the procedure started. I didn’t have any issues with the endoscopies and colonoscopies other than I felt very exhausted after the procedure.

When I had a hysterectomy, this same GI doctor had me do a short course of Prednisone to calm down my system prior to going through a major surgery such as this. Again, the idea was to give my body the best chance of recovery without a reaction. I was able to get through the hysterectomy surgery fine, and my husband brought safe food to hospital for the 3 days I was there. However, the only pain medication that I can tolerate is Fentanyl, which I had through IV in the hospital and then through a patch when I went home, since having any medication go through my gut causes severe stomach upset, and yet I was still nauseated. I was put on a Scopolamine patch for this and ended up having hallucinations! Come to find out, many MCAS patients have difficulties tolerating Scopolamine, but once again I didn’t know this at the time, and neither did my doctor. It was a bumpy recovery for the first week, when I landed back in the ER for the hallucinations, but I demanded to have no medication patches and that I would just tolerate the pain. This worked for me.

I understand that not everyone would want to choose this course of action, however I can’t even take Tylenol without stomach upset. And it just isn’t worth it to me in most instances to take pain medications. I’ve had 5 breast biopsies – some stereotactic and some full surgeries to remove larger volumes of tissue – and I had to use a small patch of Fentanyl only once. I’ve found that if I just rest and take it easy, my body heals better than trying to take medication so that I can get moving back into my life quicker. And with the breast biopsies, a cold pack mitigated most of the pain for the first few hours after the procedure.

I recently had a preventative colonoscopy, and I was surprised how much easier it was this time than 10 and 15 years ago when I had my last ones. The GI doctor used Propofol, which was a much kinder drug to my system, and I chose to not have IV Benadryl because my MCAS is not as flared as it was years ago when I was first diagnosed. Also, the prep part of the procedure can be nasty since I can’t do anything but water during the prep day. Jello, popsicles, etc. all have dye in them which doesn’t work for me.

I was able to tolerate the Golytely prep just fine and only had to do 50% of it to be fully prepared for the procedure. That’s another thing I’ve learned – do what’s best for my body for the result that the doctor wants. My intestines aren’t those of a “normal” person, and therefore I don’t need to overdo the prep. The other thing that I’ve discovered that’s changed with a colonoscopy is the use of carbon dioxide rather than air for the doctor to get a better view of the colon. This allowed my intestines to absorb the carbon dioxide rather than having to pass air after the procedure, which can be quite loud and painful!

Medical procedures with MCAS require that we become our own advocate. Make sure to educate all medical personnel about your history of reactions, what works well and what is likely to be a trigger. Keep your stress level as low as possible by having a good friend or family member with you for every procedure. You don’t have to do this solo! And make sure they have all your medical history too. Then you can relax, as much as possible, and sail through your procedure!

I recently completed a series of Neurotherapy sessions at a local clinic called Neurotherapy of Colorado Springs. I was thrilled with the results that I experienced while still being in therapy, and I continue to see more positives now that I’m a graduate! I wanted to share with my readers how valuable Neurofeedback can be.

First, I’d like to share why I chose to pursue Neurotherapy. During my long progression of healing from Mast Cell Activation Syndrome (MCAS), I began to read about how our thoughts affect our body. I’ve written about New Thought elsewhere on my website here. I began reading books by Dr. Joe Dispenza and Ernest Holmes, and learned how powerful my mind really is, especially when it comes to illness. The education was very helpful, but reading about something and actually doing it to effect change are two different things.

I attended two of Dr. Joe Dispenza’s in person courses about 10 years ago along with participating in his monthly telephone presentations, which was a different progression of courses than what he currently has. Nevertheless, I was able to learn meditation techniques and was disciplined to meditate every day in addition to “blessing the energy centers” of my body for a couple of years. While I learned a lot of new lingo, for myself I never could see much progression in the healing of symptoms I was experiencing. I know some people really relate to Dr. Joe’s techniques, but for me I didn’t get results, and in fact some of the breathing techniques he suggested made my symptoms worse!

I looked into Dynamic Neural Retraining and the Gupta Program, both of which help to retrain the brain, and was concerned about my ability, once again, to get any results when I was basically left on my own to practice these programs. Some people are able to follow directions, and feel the energy, and make progress. For me, I’m not blessed with that. I need hand holding and someone to provide feedback to me to ensure I’m not off doing my own thing and wondering why I’m not getting any results.

I had begun to read about the relationship that mast cells have with the nervous system, and I knew from my experience with Rapid Resolution Therapy (RRT) that having my nervous system calm down around traumatic events was very helpful. However, my nervous system felt like it was at the level of fight or flight constantly, even when there wasn’t any trauma or upset occurring. That’s what landed me doing a Google search for Biofeedback and Neurofeedback.

I found that there are A LOT of practices that call what they are doing Neurofeedback. They wanted to rent me a machine to take home and plug myself in. Once again, I didn’t trust that I could do that correctly. And I really wanted to do Biofeedback AND Neurofeedback since I knew that I had a lot of body symptoms occurring from MCAS like itchy skin, stomach aches, occasional hives, general inflammation and hot flashes.

Other practices promised amazing results for anxiety in 6 sessions, yet performed the same services on every patient. This didn’t feel like the right route for me, especially knowing how sensitive my body is. I wanted something that was geared toward me, and I was willing to put in the time and effort to make it work.

It took a while of being on a wait list until I could get into Neurotherapy of Colorado Springs. My insurance didn’t cover the sessions, and I’m not sure if any does, but their practice is booming! They see people with brain injuries, children and adults with ADHD, older people with memory challenges, and many other brain related issues including anxiety. The best part was that when I mentioned that I wanted to calm down my mast cells and that I had a diagnosis of MCAS, the Director knew exactly what I was referencing. I can tell you that rarely occurs. Too many times, I’ve had to explain to doctors what MCAS is, and I was thrilled I didn’t have to do that this time.

I first completed a qEEG (Quantitative Electroencephalogram) which measures electrical activity in brain waves. I wouldn’t be able to read the results of this, but a Neurotherapist at the practice was able to look at my brain waves and tell me almost EXACTLY what my symptoms likely were (even emotional responses to stress and anxiety), where they sourced from, and what they would be able to do to create new neural pathways. I was quite impressed, especially since I hadn’t given any background information at that point. He was able to see all of this based upon my brain waves being too active or not active enough in certain areas of my brain.

The qEEG is such an important gathering of data, and many Neurofeedback practices that I had interviewed didn’t use this tool, mainly because it is an expensive test. I’ve had friends who have gone to those practices and ended up experiencing increased anxiety rather than diminishing anxiety with sessions of Neurofeedback. That’s the last thing I wanted to have occur.

I attended two one-hour sessions per week for a total of 50 sessions. Within the first two weeks, I was able to sleep more soundly. More than just the changes that I noticed, my husband noticed how much calmer I was. I was able to stick with difficult conversations without “freezing” or needing to take a break. In general, I was functioning much better with much less anxiety.

As I wrote in a previous blog post, I got COVID in the middle of Neurotherapy and was shocked at how much my brain turned to mush when I returned to continue with sessions. I was able to get brain function back quickly however, and graduated with what feels like a different brain!

Anxiety previously would awaken me in the middle of the night, and I’d have difficulty getting back to sleep. I now have a breathing practice which I can get centered into and fall back to sleep easily.

I’m able to continue to practice HeartMath which I wrote about previously here, which helps to keep my parasympathetic nervous system helping my body to rest and digest.

My skin is no longer a dot-to-dot rash of itchy bumps. And best of all, I no longer have symptoms of IBS (Irritable Bowel Syndrome)! I feel sure the IBS was related to all of the anxiety I was experiencing with MCAS.

I’ve tried adding new foods to my diet and no longer have the immediate MCAS response of flushing and anxiety. The interesting thing is that I do still have EoE (Eosinophilic Esophagitis) and that disease mechanism does not seem as responsive to the Neurotherapy. I’m in hot pursuit of a modality to cure it now.

In the meantime, I would encourage anyone wanting to retrain your brain to check out Neurotherapy!

It took me about 5 years to get an official diagnosis of Mast Cell Activation Syndrome (MCAS) after getting stung by a wasp and having my body then experience allergic-like symptoms, an inability to eat many foods without a reaction, ongoing stomach aches, diarrhea and acid reflux. Sadly, many people today are still having difficulties getting an MCAS diagnosis. I know this because I hear from so many of them asking for assistance.

I’ve also had the question posed to me, “What helped you feel better quickly?” Depending upon how long you have been suffering with MCAS symptoms, your body may be able to tolerate different medications that can alleviate your symptoms. However, if you’re like me and have had a long list of issues for years, feeling better can be a slog that takes years to find the right combination of medications and other modalities to begin to help you heal.

I was prescribed Zyrtec and Zantac (it was still on the market in 2006 when I began to have symptoms) initially. For about 2 weeks, these medications were wonderful. Everything calmed down and I was able to eat any food I wanted, and I then went off both meds only to have my acid reflux and gut issues come roaring back. After that, I continued to feel worse and worse with each passing year. All of the gut issues I was having didn’t immediately respond to medications. And some of the prescription meds my doctor prescribed made me feel worse rather than better. Antacids like Zantac or Pepcid gave me more symptoms than what they were helping, which was very frustrating!

After 5 years, I was prescribed Ketotifen, a compounded prescription mast cell stabilizer and immediately felt better with the first pill. This was the first and only medication that provided relief to me without a horrible array of side effects. I eventually ended up taking the maximum dose of 4 mg per day, yet I was still having numerous other gut issues that weren’t helped by the medication.

That led me to a modality called Network Spinal Analysis, (which is now called Network Care), a type of chiropractic practice that focuses on energy in the body. I have written about this here. I was able to get my stomach churning and nausea to cease after each session, which was a wonderful relief! However, this calm body wouldn’t last but about 24 hours at first. I continue to see a practitioner twice a month to keep my body tuned up, and I’ve found other modalities to help the gut problems.

A real key for me was to switch to eating organic, and I ate food that had no spices or oils on them. I didn’t realize how important this was until I could feel the difference in the lessening of acid reflux that I had been experiencing daily.

I tried Traditional Chinese Medicine, which was helpful but VERY slow in progress. For someone looking for more information, you can read about that here. Some MCAS patients are able to tolerate ingested herbs and supplements easily. I was not. That is likely why it took years to build up any type of tolerance and get to a therapeutic dose. And Chinese herbs aren’t meant to be taken forever. I was certainly helped by them, but it wasn’t a quick, easy fix.

I was then introduced to Zhineng Qigong in my pursuit to heal my body. This type of Qigong was created by Dr. Pang Ming, a medical doctor, a Chinese Medicine Doctor and a Qigong Grandmaster. In 1979 he created Zhineng Qigong to help his patients heal at a medicine-less hospital in China, and the results were amazing. Patients were being healed of cancer and gastritis along with many other issues. I have been practicing Qigong daily for 3 years now and I continue to learn more of the nuances of the breath, posture, movement and energy. I could immediately feel a release of tension in my shoulders and hips, and my immune system got a boost during every practice where I would feel like I was catching a cold before practicing, and afterward I no longer had that feeling! It also put me much more in tune with my body which I needed to continue my healing journey. There are wonderful teachers of Zhineng Qigong which you can read about here and here.

Lastly, a modality that has calmed down my nervous system is Neurofeedback. I have found that my mast cells and nervous system have a communication going between them that has continued for years, and isn’t positive! If I get stressed, my nervous system calls in more mast cells. And if there’s pollens, my mast cells activate my nervous system and suddenly I feel anxious. And many times, I wasn’t able to stop this process, which meant the source was somewhere other than my body. In fact, I learned that my brain was creating a lot of the issues I was having. I began Neurofeedback in my city of Colorado Springs at this practice. I have been thrilled with the results. Within 2 weeks, I was sleeping again! I didn’t realize how much my sleep had been compromised with all the mast cell activation that was still occurring. If I had work stress during the day, my nervous system would be so activated that I would be itching through the night and unable to get a good night’s rest. Part of my Neurofeedback session is also HeartMath which I wrote about here. Now, I have a paced breathing practice that calms my nervous system down and I’m able to stop my mast cells from activating! I wish I would have discovered Neurofeedback years ago to help my brain not get into the patterns I’ve lived with where anxiety was so heightened. However, I’m very grateful to have found it now to be able to create new neuropathways in my brain which is calming down my body.