My Bullet Journal Tracker for Mast Cell Treatments and Reaction Symptoms

Mast Cell Activation Syndrome (MCAS) is commonly found in people with Ehlers-Danlos Syndrome (EDS).  Each person has their own tolerance limit for the histamine levels running amok in their body before a reaction occurs.  We like to refer to this as the "histamine bucket" that gets filled as various triggers contribute to histamine release.  Once one's "bucket" is full, that means levels are at a point where reactions occur.  Many different substances can contribute to the filling of this histamine bucket or to the slowing down the draining of this histamine bucket.

Mast cell disorders are complex conditions that even most doctors have trouble understanding.  However, I have found a wonderful doctor who suffers from this condition herself, so she is very empathetic and understands the many challenges of struggling with this complex condition and trying to manage the variety of symptoms.  I recently visited this doctor, armed with some nicely charted trackers in my Bullet Journal.  

NOTE: If you are unfamiliar with Bullet Journalling, it is basically a simple system you can use to keep track of your tasks, projects, thoughts, habits, or whatever you want, in a fully customizable format, starting with a blank journal.  For more info on the basic concept, please visit: Bullet Journal.  There are also loads of various Bullet Journal - or BuJo - groups on Facebook, plus loads of ideas on Pinterest as well.  Tracking medical information is just one kind of the myriad things that can be tracked or organized within a Bullet Journal.  You make it what you need it to be for yourself.  I have been using the system since last October and love it.

Anyway, my doctor was extremely impressed with the design of this tracker and asked where I found such an idea.  I had created this tracker after being inspired by the online BuJo community, so I decided I would pay it forward, helping patients and doctors alike by sharing my design publicly on my blog, so others can be inspired to create their own trackers to help them look for patterns in efficacy of the treatments they try.  This has been a very useful tool in answering the questions my doctor asked me during my recent follow-up appointment, and I think it's clear enough to read at a glance as well.  An added bonus is that daily tracking only takes seconds because I don't have to write much each day, once the table has been created.

Without further ado, below is my first month of tracked data, which was created after visiting my doctor on January 3rd of this year.  

Here is how to interpret this tracker.  

Basics:

This spread only covers the month of January 2019.  I have been creating monthly trackers as I go, to continue to track things, making any adjustments as I see fit, for whatever reason.  I chose to share the January one because it is the most comprehensive thus far and demonstrates the most variety of the elements that can be used.

I have listed the dates of the month across the top of each section, as columns.  You will notice that each date gets 2 cells: AM and PM. This is so I can track morning vs. afternoon vs. evening for each date. I als highlighted each PM row in yellow, to keep me from accidentally marking the wrong cell, especially as the cells I need get farther away from the labels.  

The vertical lines are simply to divide the weekends from the rest of the week.  My symptoms tend to be worse when working at, or commuting to or from the office, so I wanted to easily see when I was working in the office vs. not.  In addition, since I sometimes work from home or have a day off work during the usual work week, I noted "H" for "home" at the top for those dates, to indicate that I did not go into the office on those dates.  I also added dashes (-) above the days I left home but went elsewhere from the office, since I was not at work, but not at home for at least some of the day.  The reason I tracked where I was is that helps me gauge the exposure to my usual triggers.  These were added later, as afterthoughts, as I had not anticipated these tracking needs when I first created the tracker.  I think they sufficiently meet my needs, though.

I created two major sections in this tracker - Treatments and Symptoms - so I can track both aspects of my health for each day. That way I can see what I took and what symptoms I suffered each day, to see if there was any change in symptoms with changes in treatment dose or type. 

Notice I did not include any way to track triggers in this tracker.  By the time I created this, I had already learned that the most troubling triggers for me had been fragrances (perfumes, scented products, tobacco, etc.), in addition to my known allergens (apple, Vicodin, pollens, molds, animal danders, dust mites, dust), and some sensitivities (aspartame, sorbitol, xylitol), as well as physical triggers (changes in temperature, pressure, abrasions), and I had already learned what kinds of symptoms each of these triggers tends to cause for me.  I have a separate list of all of these bothersome triggers and the symptoms they each cause elsewhere in my BuJo.  

If you do not yet know what is triggering your symptoms, you may wish to find a way to track your suspected triggers with symptoms first, or even at the same time as your treatments, if you have room.  Do whatever works best for you!

Treatments:

The top section is for the treatments I used during this month.  I indicated the dosage of each tablet/capsule on the left, next to the treatment names.  I grouped the treatments by the relevant histamine receptor, and also divided each date into AM and PM so I can track morning vs. afternoon/evening doses separately. 

I indicated the number of tablets/capsules taken under each date.  From 1/4/19 to 1/12/19, I took 1-10mg tablet of Loratadine every day, in the AM; from 1/13/19 to 1/31/19, I took 2-10mg tablets of Loratadine each day, one in the AM and one in the PM.  

Note that I did not try any of the other 3 treatment options in January, but I included them because I did not know what I would end up doing when I created the table.  Turns out I managed to do better on my second dosage level of the first treatment I tried, so I stuck with that.  Your results may vary, of course.

I grouped the treatments and symptoms by the relevant histamine receptor, as well, to help see if H1 blockers were helping with H1 symptoms, etc.  The dotted horizontal lines are to help me visually divide the groups of H1 from H2 and from other symptoms.  I got a brief overview from my doctor about which histamine receptors are responsible for which symptoms, and which treatments target blocking which histamine receptors.  Here is more basic info on the various histamine receptors and treatments that block them.  (I am not sure what histamine receptors, if any, are relevant for the last group of symptoms, but I still wanted to track them here.)

Notice that I listed all of my potential treatment options in the chart, but thus far have only tried the top one, Loratadine, an H1 blocker.  I was wisely advised by my doctor to make only one single change at a time, so I could be sure to effectively judge the effects of each, individual change made in my treatment.  She also advised me to let each change in dosage or treatment remain the same for at least a week or two before judging its effectiveness, as it can take a week or so to see the effects of those changes.  

Thus, I do not have data for the other three treatment options she gave me.  I may consider switching treatments or dosage in the future, depending on how my body does and which symptoms continue to be bothersome for me, and I also wanted to note the details so I can remember the details when I need them.  Your list of potential treatments for your trackers may be different from mine.  Discuss treatment options with your doctor so you know if these are right for you.  Everyone is different and requires customized care.

Symptoms:

For the symptoms section on the lower portion of this tracker, I also grouped symptoms by the relevant histamine receptor, and again, divided each date into AM and PM, with PM rows highlighted, so I can easily track morning vs. afternoon/evening separately.  

The numbers used in the Symptoms section correspond to the severity of the symptom experienced on that date.  I did not note a key, but the range is from 1 to 3, with 1 indicating a mild level, 2 indicating moderate level, and 3 being a severe level.  I figured a number would be an easy and space-saving way to note severities.  If you come up with something else that makes sense to you, feel free to use that method instead.

There was another relevant and telling symptom that I tracked elsewhere, but didn't realize it would be relevant when I created this tracker: mood.  After having suffered for months with moderate to severe daily symptoms at work, like headache, nausea, dizziness, flushing, and asthma, understandably, my mood suffered as well.  I was cranky a lot of the time!  It was only after my mood lifted due to significant relief from these symptoms after taking Loratadine, that I realized it was a relevant indicator of how I was doing overall.  You may want to add a row to indicate a mood for each date, perhaps as a single, additional row for each date.  

Speaking of mood, I also learned at my recent follow-up appointment, that too much of a good thing can be troubling as well, as taking too high a dose of antihistamines can result in too little histamine in your system, which can lead to depression symptoms.  It seems too much histamine can also result in depression.  This is why treating mast cell disorders is such a tricky business.  It's not wise to just dive in and take the highest dose of these treatments because overkill can lead to some serious side effects, so be aware of the balance.  Again, definitely work with your doctor to help you find what is the right treatment and dosage level for you and your particular needs.  And if you want to track depression symptoms, definitely do that.  Sometimes depression can sneak up on you, so it can help to be able to look back at your own data to determine if there is a pattern.

Advice:

I encourage everyone to take responsibility by observing symptoms in whatever format works best.  Here are some final tips for learning more about how your body is behaving and what it needs.

1. Be consistent and track everything at least daily, to ensure a high level of accuracy.  Reflecting back on your day just before heading to bed might be a good habit to try.  
2. Try one change in treatment or dosage at a time, and stick with it for at least a week, preferably two or three, to see if the change is effective for your needs.  
3. Feel free to also track triggers, side effects, moods, or any other relevant aspects of your health, if doing so will help you make informed decisions about your treatments. 
4. Look online to see what others might be doing to track their health details and share your great ideas with others as well.  Get ideas from many sources and come up with something that works for you.  The more knowledge and insight we can share with each other, I think the better our chances of getting these complex and mysterious conditions figured out and under control.

My tracker is just one way to track this kind of information, but it has been customized for my own needs and works well for me.  I hope this example inspires you to come up with your own tracking methods and find out more about what you need.  

I Finally Have Answers! If you Have Fibromyalgia and Are Hypermobile, Please Read!!

2018 has been extremely important in finally figuring out what is behind all of my health woes. I have been feeling markedly worse the past several months, with more injuries, more pain, and more questions as to what the hell is happening in my body. As my condition continued to slide, I became more adamant about figuring this out, once and for all. And this is one of those times when things have to get worse in order to get better, because I finally have answers and something that ties all of my apparently random symptoms into a single diagnosis that explains everything for me: Ehlers-Danlos Syndrome (EDS), Hypermobility Type (hEDS).

EDS also tends to bring Mast Cell Activation Syndrom (MCAS) and Postural Orthostatic Tachycardia Syndrome (POTS) along with it, which also seem to be what I have been experiencing, according to the specialists I have seen thus far.  We are still working on confirming the MCAS, as it is tricky to test unless there is an actual reaction occurring at the time of testing.  POTS seems likely per the EDS geneticist and the MCAS specialist, but I need to wait until January of 2019 to be seen by the EDS knowledgeable specialist who can test me officially for that.  A tilt-table test is likely to happen then.

In addition, Osteoarthritis (OA) also tends to occur in EDS patients because of accelerated wear and tear on the joints.  I have already been diagnosed with OA by my rheumatologist, after showing her my Heberden's Nodes which have formed on two of my fingers already.

After reading all about this connective tissue disorder and how it affects people who have them, I realized I have a lot on the very long checklists.  So I sought out a local genetics doctor who is knowledgable  and booked an appointment.  EDS is not well understood by the medical community, as it is complex and there is no real treatment or known cure as of yet.  That means there's really no money in it, so not many doctors invest the time and energy to learn much about it and treat EDS patients.  (Sad, isn't it?)  Despite these challenges, I had to know if this could be the cause of my health problems, so I could at least understand what is going on in my body and try to prevent further injuring it.  I set out to find out who could rule out or diagnose this condition in me, locally.  A local Facebook Group in my area was very helpful in finding resources near me.

In order to be properly diagnosed by an EDS knowledgeable genetics doctor, one must:

1. Discuss family health history, 
2. Have this doctor examine you for certain physical traits and characteristic reactions, 
3. Perform a certain set of specific physical tests in front of the doctor, so he can assess the Beighton Score for hypermobility, and finally, 
4. It may also be recommended to have genetic testing done to rule out or identify certain types of EDS.

Once the several months of waiting for my appointment passed, I finally went to see a local EDS knowledgable genetics doctor and did all of the above.  Everything points to EDS, and the Beighton Score, along with the genetic testing, pointed specifically toward the Hypermobility Type of EDS.  Thankfully, this is not one of the more severe and life-threatening types, but it can still be debilitating.  Unfortunately, debilitating is where I seem to be headed now.  I'm not sure if it's just my age or what I've been going through, but something has caused my body to take things to the next level of awful this past year or so.

Recently, I've been rolling my ankle just walking on flat sidewalk (couple times!), I've had painful shoulder tendinitis that required over weeks of physical therapy to strengthen, I have been having new problems in my hip that make bearing weight excruciating after a period of sitting, and my knees, which have always had a tendency to buckle painfully, are acting up more these days.

I've also been reacting with flushing for no apparent reason and developed new sensitivities to Hydrocodone and Xylitol, in addition to the new food allergy to apples that I've developed in recent years, and the new lip balm reactions I have had as well.

Now that I know what's going on, I needed to understand it.  I have recently been having an awful flare up that's been affecting my neck and shoulder, back, and knees for the past week plus now.  It's been a pretty high level of pain much of the time, and is apparently not being well managed by the Cyclobenzaprine and Low Dose Naltrexone (LDN), which has been helpful in lowering my "new normal" pain levels and giving me more good days between flare ups.  These flare ups, however, are terrible lately.  I have been laid up for several days, including last Saturday, just trying to rest up and heat the affected area.  All it takes is a few days of level 8 pain to make you wonder how you can go on.  I have had to keep talking myself down to get through it.

In my current, painful state, I did some quick research on my newest, and most important diagnosis. I found this page, EDS-H & JHS: Understanding Ehlers-Danlos Syndrome Hypermobility-Type and Joint Hypermobility Syndrome to be very informative and an excellent resource for understanding how all the little diagnoses I have collected throughout my life are all tied to the connective tissue disorder, Ehlers-Danlos.

I'll try to sum up what I know now, but if you or your child or children are hypermobile, you may want to read the above web page as well to see if you relate to other details. 

Okay, here goes...

Collagen is the connective tissue "glue" that holds our bodies together. When this connective tissue is defective and weak, as it is for EDS patients like me, joints can overextend (hypermobility) and less unstable than normal people's joints. When joints hyperextend, dislocations and subluxations (not quite full dislocations) can occur. When joints sublux or dislocate, the surrounding, and already weak tissues (muscle, tendons, muscle fascia, etc.), become overstretched, and can tear and stiffen as they attempt to repair the damage. All of this spells pain, in many ways, at the very least, plus various other problems in the body. For this reason, EDS patients need to protect their loose joints with various braces and limited activities. This explains my several ankle rolls and foot tendonitis, shoulder tendonitis, and carpal tunnel pains. It also explains how that car accident in 2006 triggered a world of hurt in me that never got better, but rather snowballed to where I am now.

When movements and activities lead to these painful and destructive episodes, those movements and activities tend to be avoided - have never been athletic - leading to weakened (doughy) muscles. Weak muscles can further destabilize joints, continuing in a vicious circle of pain and destruction. This explains my chronic pain and flare ups.

Weak connective tissue manifests many ways, such as Fibromyalgia, a syndrome that describes chronic pain, fatigue, sleep disorder, Irritable Bowel Syndrome (IBS), Migraines, Temporomandibular Joint Disorder (TMJD), allergies and various sensitivities, and lots of other odd little things that make my life extra challenging.

EDS is associated with 2 other conditions that are frequently comorbid: Mast Cell Activation Syndrom (MCAS) and Postural Orthostatic Tachycardia Syndrome (POTS).

Mast Cell Activation Syndrome (MCAS), has to do with histamine and allergies and sensitivities. Basically, any kind of physical reaction that can occur as a result of any kind trigger is fair game. For me, this explains my hay fever and allergies to tree pollen, weed pollen, grass pollen, dust, dust mites, feathers, animal danders, mold, fragrances, newspapers, apples, lip balms, nickel, scratches, pressure, Hydrocodone, sudden temperature changes, and who knows what else. My reactions include rhinitis (sniffling, sneezing, and nasal congestion), asthma (cat dander, mold, dust mites, fragrances), digestive cramping and dumping (apples, hydrocodone, and unidentified triggers), hives (Dermatographia from scratches, Delayed Pressure Urticaria from pressure), dermatitis (lip balms and nickel), and flushing red and burning skin (sudden temperature changes and unidentified triggers). A lot of "masties" may suffer anaphylaxis when exposed to some of their triggers. I have had a few episodes myself in the doctors office after a slightly too high incremental increase in my desensitization injections, and have had to do the Epi-pen and inhaler thing. It was quite a production!

The other comorbid condition is Postural Orthostatic Tachycardia Syndrome (POTS), a type of Dysautonomia, which has to do with blood pressure changes, heart rate changes, heart arrhythmias, and fainting or near fainting, that is triggered by one's change in posture. This is due to blood pooling at lower areas of the body rather than circulating more reliably throughout the body. It goes back to weak connective tissue causing weak blood vessels and heart tissue, which, in turn, results in poor circulation of blood in the body and brain. This explains my momentary blindness and dizziness when getting up quickly, my unexplained heart rhythm (tachycardia) episodes - the first one triggered by my bending down to pick something up at age 17 lasted hours and I had to go to ER - and an apparent heart rate change when I squat for a couple minutes then stand up straight, as a specialist tested. I also get migraines, which are caused by a decrease in pressure in blood vessels, which makes sense here.

Some types of EDS affect internal organs and can lead to weakened arteries and digestive tract organs, which can rupture. Vascular type is particularly dangerous, but there are 13 types of EDS and several of them carry serious health risks. Hypermobility type is what I have been diagnosed with, though many of the 13 types also present with hypermobile joints. Genetic testing helps rule out or diagnose the types which have identified genes. EDS is inherited and it is usually the same type that runs in families.

The gene for Hypermobility Type has not yet been identified, so testing is done to rule out the other types, which is how I was diagnosed, along with family history and a clinical Beighton Score test for hypermobility.

This turned out to be way longer than I expected it to be, but I hope it helps someone make sense of their symptoms or lead to a correct diagnosis and proper care. Please feel free to share with others. EDS is not as rare as it seems. Doctors and patients need to know more about it so people can get the care they need and patients can arm themselves with knowledge against unnecessary injury and pain.

If you or your kids are hypermobile, please learn more about EDS and pay attention to these seemingly unrelated conditions and symptoms. There is a tie in!

When symptoms don't seem to connect, think connective tissue!