Dysautonomia Awareness Month 2017 Wrap-Up

I can’t believe that October is already over! How is it November 2017 already?!

Sorry my posts completely stopped. I got very sick and couldn’t look at my computer for a good chunk of the month, and then life got in the way after I recovered.

However, I didn’t want you to miss out on all the stuff I did post for the month!

Blog Posts

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10 Common Dysautonomia Misconceptions – Dysautonomia Awareness Month

Because so little is known about dysautonomia, there are a lot of misconceptions out there! I wanted to address ten of the most common ones here.

#1: Dysautonomia = POTS

As I discussed in my “What is Dysautonomia?” post, there are many different types of dysautonomia! While many people with dysautonomia do indeed have POTS, especially younger people, it’s only that way because it’s one of the most common types.

umbrella-158164_1280Dysautonomia is an umbrella term, meaning there are many subcategories. Dysautonomia International has thirteen distinct types listed on their website, and they state “this is not an all-inclusive list.” There are so many different types, and types still waiting to be classified and studied. Continue reading

Temperature Dysregulation in Dysautonomia – Dysautonomia Awareness Month

In part 2 of my dysautonomia journey, I mentioned that temperature dysregulation is my most prevalent and obnoxious symptom. I wanted to elaborate on what exactly temperature dysregulation is, and why it’s a common problem in dysautonomia patients.

Temperature dysregulation can include both heat intolerance and cold intolerance, but intolerance and dysregulation are different.

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My Dysautonomia Journey, Part 2 – Dysautonomia Awareness Month

Please read part one of my journey: here.

Dysautonomia has no cure.

Some people “grow out of it,” while others never do. The main people that appear to “grow out of it” are teenagers – these people tend to get sick due to all the changes happening in their body while they are going through the transition from child to adult, but then they get better when they reach adulthood (medical adulthood, not age 18).

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Since my dysautonomia started after I became an adult, it is unlikely to go away. Becoming pregnant could make it better, worse, or it may stay the same. Even if it gets better with pregnancy, I may go back to the way I am now after giving birth, or could get even worse than I am now! If it gets worse during pregnancy, it may get better after birth (better than now) or go back to how I am now, or it may stay worse. There is no way of telling for sure what it will do. Starting menopause will probably change it again, but there is even less known about what will happen with my dysautonomia at that point in my life.

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My Dysautonomia Journey, Part 1 – Dysautonomia Awareness Month

I started this blog shortly after my initial dysautonomia diagnosis: POTS. My struggle with POTS was a big part of why I started this blog.


Please read my first post about my journey: My Struggle with POTS. I’m not going to go into as much detail here as I did in that post.

To learn more about POTS, please see my last Dysautonomia Awareness Month post: What is Dysautonomia. You can also watch this excellent video: What is POTS.


Summary of the First Part of my Journey

I first got sick around October 2014. It all started with a blood pressure check at a yearly checkup, where it was randomly 130/90 – for all my adult life I had been “normal” at 120/80. I was confused by the high reading, but felt okay… but that didn’t last long. My condition started to go downhill fast: dizziness, lightheaded-ness, feeling short on breath and tired easily, painful swelling in my extremities, more intense headaches more often, more intense temperature sensitivities, and a few other things that I didn’t think could be related or were related to conditions I already knew about. In general, I felt atrocious. I got really sick one night and went to get a blood pressure check at Walgreen’s, and it was 156/110! Not good.

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It got to a point where I literally could not stand upright on my own. When Dan was at work, I was crawling around my house so that I wouldn’t fall (he was sweet enough to setup my coffee table with my most commonly used items every morning so I wouldn’t need to get up). When Dan was home, he was my “walker” and he would have to walk me everywhere. Otherwise, I was flat on my back on the couch.

My routine checkup with my rheumatologist (for my fibromyalgia) came about shortly after everything went haywire, and I mentioned the weird symptoms. He suggested I look into POTS. So I researched it, went to my PCP (well, a doc in the same clinic) and was prescribed a blood pressure medication and sent for testing.

Eventually, I had my tilt table test February 13, 2015. A tilt table test measures your heart rate and blood pressure in a lying down position, and then monitors you while you’re upright (they strap you to a table and tilt the table up). I saw the cardiologist April 8, 2015, and got my diagnosis of POTS.

Even though I had POTS, it wasn’t the “classic” form of the condition. In the “classic” POTS (the most common form), you stand up, your blood pressure plummets as your heart rate rises, and you either come close to passing out or pass out (depending on how low the blood pressure goes and how high the heart rate). When I was upright, my blood pressure and heart rate both skyrocketed and stayed there. (They also gave me half of a nitroglycerin tablet in the hopes of causing me to faint, but I never did. All the nitro did was make me super ill feeling, shoot my heart rate over 160 beats per minute, and make me wish I would pass out so it could be over with. I found out later that the nitro doesn’t actually do anything clinically and is more of a “torture device” for curiosity. Ugh.)

I was lucky. My diagnosis came just six months after the onset of my symptoms. A lot of people with POTS and dysautonomia have to wait six or more years to get a diagnosis! If my rheumatologist hadn’t been so knowledgeable, I would probably still be searching for an answer.

Living with POTS

I continued to see that cardiologist for a lot longer than I should have. The appointments bothered me, but I liked the rest of the staff and my doctor seemed to know about POTS. However, I was definitely doing most of the work myself – research, lifestyle changes, etc – and just getting prescriptions from my doctor.

medication-31119_1280For medications, I was put on a cocktail of Corlanor, Bystolic, and losartan.* The losartan was the original medication my PCP put me on to lower my blood pressure; the Bystolic is a beta-blocker to help lower my blood pressure more, hold it steady, and lower my heart rate a bit (and I was put on a very low dose); the Corlanor was a fight with my insurance, but it was to lower my heart rate.

*I am not a doctor! I include these here just so my journey is more complete! Never ever ever make changes to your medications without talking to a doctor that knows your medical history! And please, don’t ever change heart medications without the thorough and watchful eye of a knowledgeable doctor!

Tools that I eventually found helpful were compression socks – I use knee highs and get a lot of the from RejuvaHealth because they have medical grade compression in cute patterns, I do not have an affiliation with them – that I would wear if I was going to need to be standing for a long period of time, increasing my salt when I felt symptomatic, and trying to rest as much as possible.

Pilates Open House

I had also, conveniently, started going to a wonderful Pilates and physical therapy studio for an unrelated problem! The studio is not covered by my insurance, but I had been recommended there after I almost ran out of insurance physical therapy. I’m so glad I went! Doing Pilates regularly – strengthening my core and legs – has proved invaluable to my dysautonomia journey! I have been having weekly physical therapy sessions, and attending regular Pilates classes, since early 2015 and it has helped me dramatically in my everyday functionality. While “have you tried Pilates?” is a horrible cliche question that many dysautonomia people face, it has honestly been one of the most helpful things in my search for wellness. I’ll write more about it later this month. But I do have to say, my early diagnosis and the fact that I started Pilates very early into the course of my condition have been essential to my progress and success at using it as treatment. Had I been dealing with this condition for even a year before trying Pilates, I doubt I’d have seen the benefits I have gotten.

As my relationship with my cardiologist continued, and I got increasingly annoyed, I began to wonder if I could be getting better guidance elsewhere. Then, at one visit, I mentioned that my toes were often so painfully cold I had to put heating pads on them to get relief – and I summed it up to my circulation. He said it wasn’t my circulation, it was because “you’re a woman.” Yes, he actually said that. Apparently, “all women complain about cold toes” was the reason my circulation was “just fine.” Dan and I were completely dumbfounded. I was supposed to schedule another appointment, but instead I just walked right past the scheduler desk and straight out of the office.

Newest Chapter in my Journey

A good friend, Nikki from Undiagnosed Warrior, recommended I go to see her cardiologist up at National Jewish Hospital. He had been instrumental in her diagnosis journey, so I decided to go for it.

My first visit with him was amazing! You can read more about it here: New Cardiologist Appointment. Unfortunately, he was moving to Kaiser which is the one place I couldn’t follow him. (In case you’re not in the USA, Kaiser is a medical system that is only available to people with their insurance. If you don’t have Kaiser, you cannot be seen in any of their facilities. If you do have Kaiser, literally all other facilities are “out of network.” In theory, it’s a great idea because you have integrated healthcare. In practice, everyone that I know with Kaiser and complex health has found it to be an absolute nightmare. Apparently, if you’re healthy, it is great, but only if you are a “normal” and healthy person.)

On my first – and only – visit with the new cardiologist, he told me “I don’t think you have POTS.” Oh. Okay then. That visit was February 8, 2017. That means I had the wrong diagnosis for almost two years!

Well, I don’t think it was necessarily the wrong diagnosis, but it no longer was true. I had been off Corlanor for quite some time, had been off losartan even longer, and was now taking just the Bystolic. I was still having horrendous dizziness, which I attributed to the Bystolic, and general feelings of “yuck,” but my heart rate seemed to be controlled pretty well.

In fact, there have been very few exceptions where my heart rate has gone over 120 beats per minute with normal activity. Yes, if I exert myself it’ll go higher and much easier than a “normal” person, but it only is POTS-like when I have a cold.

When I told the new doctor about the dizziness, and thinking it was related to the Bystolic, he reluctantly changed me over to another beta-blocker. I’m so glad I changed medications! The dizziness went away in two days, TWO DAYS, after stopping the Bystolic! I was still having problems with my blood pressure, however, because I was started on an incredibly low dose of the new medication: carvedilol.

I made an appointment to be seen by one of the cardiologists that would be taking over for new-cardio-1 (NC1) for the follow-up. He was also extremely thorough and listened really well. He agreed with NC1: I do not have POTS, but instead have an unknown type of dysautonomia and definite orthostatic intolerance. (Orthostatic intolerance is technically a “type,” but is mostly just the medical term for a symptom: the inability to tolerate being vertical.) This new cardiologist, Dr W, decided to test me for two other rare conditions that could cause my symptoms (don’t Google things if you really don’t want to know, because it turned out both of those conditions were likely fatal). Thankfully, those two rare conditions came back as negative!

On my third visit to Dr W (the second one was technically with the nurse practitioner and not him), I asked for him to increase the carvedilol. He did, and increased the dose from one tiny pill twice a day to two tiny pills twice a day (they really are the world’s smallest pills). By leaving it such that I’m taking four pills instead of two pills, he left me with the flexibility to change my dose two three pills if necessary. One of the problems I would have with the Bystolic was that I would get extremely low blood pressure at night and feel very sick. Thankfully, with my current carvedilol setup, if this starts to happen again I can change to two pills in the morning and one pill at night.

Carvedilol

Carvedilol = some of the smallest pills you will ever encounter

This four pill dose seems to be helping a lot and my dizziness is not a factor! I have had very few instances of my blood pressure getting too high, and haven’t had my blood pressure get extremely low either. Honestly, I think it is why this summer and fall have been going so well for me!


“Part 2” will be coming next! Part two will talk more about the symptoms I experience daily and what life is like for me on a regular basis.



Please share this post to help spread awareness for dysautonomia and what it’s like to live with it! No one should have to wait six years for a diagnosis!

I am one of 70 million

If you can afford even a small amount, please donate to Dysautonomia International: here. DI is funding crucial research into dysautonomia, and someday we will find a cure! Let’s make that cure happen faster!

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What is Dysautonomia? – Dysautonomia Awareness Month

Now that I’ve talked about why Dysautonomia Awareness Month is so important, let’s get into what exactly this condition is…

Dysautonomia literally means a dysfunction of the autonomic nervous system. The autonomic nervous system controls all of the functions in your body that you do not have to think about, such as: heart rate, blood pressure, breathing, blinking, digestion, temperature regulation, etc. The autonomic nervous system (ANS) controls most of the systems in your body, so when it malfunctions it can do so in a large variety of very unpleasant ways.

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Dysautonomia is an umbrella term, which covers any malfunction of the ANS. There are some specified conditions that fit under the dysautonomia umbrella, where the ANS malfunctions in such a way as to cause semi-predictable circumstances/symptoms. That is to say, if you have symptoms XYZ then you will be diagnosed with condition A. However, some people with dysautonomia do not fit a specific set of symptoms and thus have an “undiagnosed dysautonomia” (or they get misdiagnosed).

As I mentioned in my kickoff post, dysautonomia is not rare! There are more than 70 million people living with some form of dysautonomia worldwide, which is more people than the entire population of the UK! (Actually, more than the UK and Ireland combined because they still don’t hit 70 million!)



Some Dysautonomia Types

The two most common forms of dysautonomia are postural orthostatic tachycardia syndrome (POTS) and neurocardiogenic syncope (NCS). (I will link each conditions’ page from Dysautonomia International at the end of the description.) To see a more complete list of different dysautonomia types, and to get more in depth with each one, please go to Dysautonomia International’s “Other Forms of Dysautonomia” page.

Postural Orthostatic Tachycardia Syndrome (POTS)

POTS is one of the most common forms of dysautonomia, with estimates saying that 1 out of every 100 teenagers will develop POTS in their lifetime. Including adults, that is an estimated one the three million Americans!

The diagnostic criteria for POTS is an increase in heart rate of 30 beats per minute (or more) within ten minutes of standing, or a heart rate over 120 beats per minute while standing. To determine the heart rate, a doctor will usually do a tilt table test, where the patient is strapped to a table and tilted to a standing position and their heart rate (and blood pressure) are monitored.

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While many patients with POTS experience orthostatic hypotension (low blood pressure upon standing) and may faint/pass out, neither of these things are necessary for a POTS a diagnosis. The condition literally just means that your heart rate gets inappropriately high when you are standing still. (People without POTS see little to no increase in heart rate when moving from laying down to standing.) In fact, some people with POTS can have no change in blood pressure or even high blood pressure upon standing! (High blood pressure upon standing is orthostatic hypertension.)

Depending on the severity of POTS, the quality of life has been likened to patients with COPD or kidney failure requiring dialysis.

Learn more: Postural Orthostatic Tachycardia Syndrome

(I also posted a good video from Dysautonomia International last year: watch here.)

Neurocardiogenic Syncope (NCS)

Syncope is the medical term for fainting / passing out – it means a “temporary loss of conciousness” (from Google).

Neurocardiogenic syncope may also be referred to as neurally mediated syncope (NMS), which is the most recent medical term for the condition, or neurally mediated hypotension (NMH). These three condition names are all referring to the same condition.

falling-2705600_1280In NCS, the person with the condition stands, experiences bradycardia and/or hypotension, then either experiences pre-syncope or full syncope. Pre-syncope is similar to the type of lightheaded-ness you experience if you stand up way to fast – except people with dysautonomia usually pass out if they do not sit or lay down quickly upon experiencing it. The hypotension is usually caused by blood pooling in the extremities – usually the legs and feet – and not circulating back up to the heart and brain.

NCS can range in severity from one to two fainting episodes (full syncope) in a lifetime, to several episodes in one day. The more severe cases can cause serious long-term problems for an individual, especially if they are hitting their head or breaking bones when they faint.

Learn more: Neurocardiogenic Syncope

Multiple System Atrophy (MSA)

Thankfully, MSA is considered to be a rare disorder, with only about 350,000 patients worldwide. I say thankfully, because this condition is fatal.

hospital-2301041_1920MSA occurs in adults age 40 and over, and kills the majority of those with the condition within 5-10 years of diagnosis. Almost everyone with the condition will be bedridden within two years of diagnosis.

Symptoms of MSA can be similar to Parkinson’s, but the condition causes nerve damage that is more widespread than the damage caused in Parkinson’s. In fact, MSA and Parkinson’s are two out of three types of primary autonomic failure, with the third being pure autonomic failure (PAF). In MSA, the nerve damage spreads throughout the body, causing a loss of control/function in all of the major systems of the body.

Learn more: Multiple System Atrophy



Thankfully, the majority of dysautonomia types are not fatal, at least not by themselves. However, this does not mean they do not cause a dramatic change in the person’s lifestyle. Imagine having knowing that every other time you stood up, you might faint; how often would you be standing up? If standing still literally made you feel like you ran a marathon, what would you do in your day? (If you ran a marathon daily, would you be able to do anything else?)

Even when a condition is not fatal, it can dramatically impact life and cause dramatic changes in the way you are forced to live your life. This is why it’s so important that we work together to find cures for these conditions!

I am one of 70 million

Donate to help find a cure: here.

Information for this article comes from Dysautonomia International! They are a fantastic source for information about dysautonomia!!!!

Dysautonomia Awareness Month Kickoff

October is Dysautonomia Awareness Month!

There are more than 70 million people around the world living with some form of dysautonomia. For perspective, multiple sclerosis (MS) affects 2.3 million people worldwide and Parkinson’s disease affects about 10 million people in the world. From several different sources, it looks like there are approximately 2 million new cases of breast cancer a year worldwide.

I am one of 70 million

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World Rare Disease Day 2017: My Rare Illnesses and Condititions

World Rare Disease Day happens on the last day of February every year! Since this year is not a leap year, that means it’s February 28, 2017!

What is World Rare Disease Day?

World Rare Disease Day (or WRDD) is a day set aside for awareness about rare illnesses and conditions. I found out about it through the non-profit patient advocacy group, Global Genes. WRDD is a day of awareness, in the hopes of spreading the word about rare diseases and starting the conversation. There are approximately 7000 rare diseases (the list changes often due to conditions both leaving the list due to too many cases, and new diseases being discovered and classified), and an estimated 300 million people world wide have a rare condition. Some/Many of these rare illnesses are fatal, some are fatal in childhood. Rare illnesses all have one thing in common: not enough work is being done to find effective treatments! Sadly, when so few people have a condition, it’s extremely difficult to get researchers interested and even harder to get pharmaceutical (or medical tech) companies interested. This is why it’s important to care about rare! With more than 300 million of us impacted by rare conditions, we need research!

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What Rare Conditions Do I Have?

Though I have several invisible illnesses, only four (with a possible fifth) of them are considered rare based on the criteria for the Global Genes Rare Disease List, which essentially just means that there are fewer than 200,000 cases in the United States. My rare illnesses: Ehlers-Danlos syndrome (EDS), eosinophilic esophagitis (EoE) and possible enteritis, postural orthostatic tachycardia syndrome (POTS), and inappropriate sinus tachycardia (IST).

Yes, I did say EDS. Technically, I haven’t been diagnosed yet, as I’m waiting on my genetics appointment in August. However, I do have a diagnosis of joint hypermobility syndrome. There is a lot of research that says that joint hypermobility syndrome and EDS (specifically type 3) are the same. Based on everything I can find about EDS, I definitely have it. I just need to find out which type I have and rule out other conditions. So, for all intents and purposes, I have EDS.

Ehlers-Danlos Syndrome

EDS is a complex  condition. There are several types of EDS, and all of them have slightly different presentations. The common thread is that they are all caused by a defect in collagen or other connective tissues. Collagen is in literally every cell in your body. The cells that are most impacted by this lack of “proper” collagen, are the cells that determine your symptoms. For example: vascular EDS has a defect in the collagen of blood vessels, which leads to weak vessels and can lead to spontaneous organ rupture. EDS, all types, is something you are born with and will have your entire life.

Hypermobility type EDS, the type I most likely have, means that I mostly have a defect in the collagen and connective tissues that impacts my joints. This means that my joints are extremely unstable, and I’m “double jointed” in many areas. THERE IS NO SUCH THING AS DOUBLE JOINTED! I only used that phrase so you would understand what I was saying. My joints hyperextend, which means they extend past what is considered a “normal” range of motion. Some of my joints are far more impacted than others: some of my fingers, my elbows, my shoulders, my ribs, my vertebrae, and my hips. My knees used to be a major problem, along with my ankles, but those have both been helped dramatically by Pilates. However, it doesn’t just impact my joints. Unfortunately, all EDS types have systemic complications. Some of my IBS issues and my dysautonomia could both be caused or made worse by my EDS.

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There is no cure for EDS, but there are therapies and treatments that can help with some of the symptoms. I do Pilates based physical therapy once a week, and I try to do weekly Pilates group classes under the supervision of my physical therapist when I’m well enough to do so. The gentle strengthening and stretching has helped dramatically in the stabilization of several of my joints. Unfortunately, this isn’t a perfect treatment (see these posts about what suddenly went wrong: 1, 2, 3), and I still have to deal with complications at times, but it’s been the most helpful things I’ve done to date. I’m also about to start hand therapy for my finger problems, and may need to get custom finger braces. The main “treatment” is bracing. I have braces for almost every joint, and I use them all pretty regularly. The braces are used on joints that are suddenly in pain and have become weak to help prevent over-fatigue and injury. However, you have to be careful with how often you use certain braces and which types of braces you use, as they can lead to muscle atrophy and a worsening of symptoms.

Postural Orthostatic Tachycardia Syndrome and Inappropriate Sinus Tachycardia

I have written a lot about POTS since I started this blog: My Struggle with POTSPOTS Things, How This New Potsie Survived the CO Renaissance FestivalWhat is POTS? A Short Video by DINew Cardiology Appointment, and October is Dysautonomia Awareness Month. You can get to all of my POTS posts by visiting my POTS category page.

I have written a bit less about IST, because I can’t actually tell if I have any different symptoms from the IST that aren’t from the POTS. My post New-ish Diagnoses explains a bit about IST.

Both POTS and IST are forms of dysautonomia. Oddly enough, it’s thought that POTS isn’t actually a rare condition, but is just rarely diagnosed. However, for now, it’s considered a rare condition which is why I’m including it! Both POTS and IST are primarily diagnosed by a marked increase in heart rate (tachycardia). POTS is an inappropriate increase in heart rate when you move from lying down to standing (more than 30 beat per minute increase, or heart rate going over 120 bpm when you stand). IST is associated with a heart rate of 100 bpm or higher when at rest, and a “mean 24-hour heart rate of 90 bpm” with no known cause (Source: Dysautonomia International). I am on the low end of the diagnostic criteria for IST, and don’t actually know what my 24-hour heart rate is. However, I definitely have postural tachycardia.

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Being forms of dysautonomia, both conditions are systemic. Dysautonomia just means a malfunction of the autonomic nervous system, which is responsible for all the automatic functions in your body. My heart rate is profoundly impacted, but so are my blood pressure, temperature regulation, and digestion. Little things creep up all the time that can potentially be explained by the dysautonomia. This condition probably impacts my life far more than any other singular condition. Every single day, I have dysautonomia symptoms. It’s a massive struggle. Unfortunately, I may have these problems my entire life and my goal is simply to find ways to effectively minimize my symptoms. There are very few effective treatments, and it’s very much a guessing game as to what will work and what won’t. Hopefully, someday, I won’t struggle with it as much as I do now.

(Recently, I switched cardiologists and these two diagnoses are now under review. My new cardiologist isn’t so sure I was properly diagnosed the first time. He definitely agrees I have some form of dysautonomia, but we’re starting over testing to better determine what is going on. You can read more about this here: New Cardiology Appointment.)

Eosinophilic Esophagitis

Eosinophilic esophagitis, or EoE, was an exciting diagnosis. Not in the way that learning you’re going to your favorite amusement park is exciting, but it was a wild ride with very dramatic symptoms!

Eosinophils are a type of white blood cells. They help fight complex infections and play a role in both allergies and asthma. It is normal to have low levels of eosinophils in your blood when you are ill (especially if it’s with parasites) or if you have seasonal allergies. However, eosinophilic conditions go above that normal.

In EoE, there is a build-up of eosinophils in the tissue that lines your esophagus. When the eosinophils are activated, they cause swelling. Unfortunately, the eosinophils in EoE are extremely sensitive and are easy to trigger. This means that your esophagus will swell. Sometimes, the triggers are foods; sometimes, environmental allergens can trigger them. I have both trigger foods (though we are still trying to determine what they are) and trigger environmental allergens.

When the eosinophils get triggered, the esophagus (aka: food tube/pipe) will swell dramatically. Since it’s the esophagus swelling, you can still breathe, it just hurts due to the neighbor being swollen and irritated. (It’s important to note, with EoE the esophagus is almost always swollen as the eosinophils cause irritation.) This dramatic swelling can cause slow swallowing, pain, and food impaction (the food gets stuck). Food impaction is considered a medical emergency, and requires immediate medical intervention. It can get so bad that you can’t even swallow your own saliva. Food impaction is extremely painful, as your throat will continue to spasm in an attempt to pass the food, but it’s being held tight by the swelling and refuses to move. This dramatic swelling can cause a build up of scar tissue, which can eventually lead to an esophagus that won’t work. If your esophagus doesn’t work, you will end up on a feeding tube for the rest of your life. Therefore, people with EoE must be extremely careful to avoid their triggers in the hopes of preventing as many “episodes” as possible. Unfortunately, the triggers can change. Something what was safe one day, could suddenly not be safe moving forward. It’s very scary.

For me, it started several years before I got diagnosed. I would occasionally have trouble swallowing. I thought I was just eating too fast and not chewing thoroughly. Then, I ended in the ER and got referred to a gastroenterologist. Normally, if food would get stuck, I’d have Dan hit my back until the food dislodged and I could swallow it or I would vomit. The episodes were getting more frequent, and I was worried about what that could mean. Then, I was out eating with Dan, my mother-in-law, and my brother-in-law. Food stuck in my throat, and I couldn’t get it to dislodge. I was running from the table, where I would have Dan pound on my back for a bit, to the bathroom to hopefully throw up (and spit out my saliva). It wasn’t working, and it started to get difficult to breathe. I assumed that peanut butter had somehow ended up in my milkshake (the place did offer peanut butter shakes) and that I was having an allergic reaction. I didn’t have Epi-pens at the time, so I took two Benadryl and chewed them. Chewed up Benadryl stings and tastes atrocious! It wasn’t working, and I told Dan we had to go to the ER immediately. (I started vomiting the Bendaryl as soon as we got outside, and then started getting cursed at by some people who must have assumed I was drunk as it was the 5th of July. We ignored them.) Luckily, we were in Casper, WY and no where in town is more than 10 minutes from the ER (we were only about 5 minutes away). My O2 stats were just fine, so they realized it wasn’t an allergic reaction. They discovered it was a food impaction (or determined somehow, it’s a little blurry), and a young doctor knew of a new way to remove the impaction without a scope. They gave me a drug cocktail of morphine, nitroglycerin, and glucagon. The cocktail worked, and my esophagus opened back up and I was finally able to swallow. My throat hurt, horribly, and I got horribly ill from the medications. (As I’ve now discovered, I do not react well to either morphine nor nitroglycerin.) We went to the grocery store and bought some applesauce and pudding cups, because I was told to avoid solid foods for a while.

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After that incident, I set up an appointment with a gastroenterologist at home (not in Wyoming). The gastroenterologist performed an upper endoscopy and confirmed EoE. We trialed a few different drugs, but now we have found something that works. Unfortunately, I recently got a throat infection that made my EoE act up. It does not appear that my EoE will go back down to the baseline it was before the infection, so I may be stuck with a higher dose of my medication for the rest of my life. The throat infection spurred me to buy two reusable respirators to help prevent me from getting ill and to prevent me from inhaling as many allergens when I’m out and about. They definitely help!

Eosinophilic Enteritis

This is eosinophilia of the small intestine. Technically, it also goes by the abbreviation of EoE or EE, but for the purposes of this article I will use the acronym ESI. This is not a firm diagnosis yet, but it is strongly suspected. You can read more about what my gastroenterologist thinks in this post: Gastric Emptying Study Follow-Up.

ESI behaves much the same way as EoE, but in a different location. The swelling happens in the small intestine, and can cause food to pass slowly. This can cause delayed gastric emptying, bloating, painful stomach distension, and constipation. We’ve ruled out most things that could be causing my GI symptoms, so my gastroenterologist suspects I may have ESI. It’s extremely rare, but it’s one of the only things he has left that could describe my symptoms. Hopefully, the LEAP testing I’m doing will help manage it.

If the LEAP testing isn’t as successful as we hope it will be, my gastroenterologist wants to do another upper endoscopy, but with a scope that is longer and can get further into my small intestine. Even if he doesn’t find concentrated eosinophils in the first few feet of my small intestine, I could still have ESI. You see, you can have eosinophilic conditions in just a few areas of an organ, so he could miss the patch of eosinophils. But I think I’d be willing to risk it to possibly get more answers.

Hopefully, we can identify several of my triggers via the LEAP testing, and get a better handle on both my EoE and ESI.


wrdd17-square-profile

Please feel free to ask me questions about any of these conditions! I will answer what I can, and can direct you to research and organizations that may be able to better answer your questions! Let’s get the discussion going!

Also, don’t forget to wear denim Feb. 28th to show that you Care About Rare! (Global Genes, get it?)



Global Genes Images available here

New Cardiology Appointment: New Diagnosis Journey Started, Old Diagnoses Being Reviewed

On February 8th, I finally started care with a new cardiologist who was highly recommended to me by a spoonie friend with POTS: Nichole from Undiagnosed Warrior. Unfortunately, he’ll be moving to Kaiser in about 3-6 months… the one place I can’t possibly follow him to!

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(If you aren’t familiar with the healthcare of America, we have private insurance companies that let you see almost any doctor. You usually aren’t tied to a specific hospital or network of doctors. Kaiser is different. If you have Kaiser insurance, you can only see the doctors in a Kaiser hospital/network; if you don’t have Kaiser, you cannot see Kaiser doctors or use their hospital. I do not have Kaiser.)

Why did I say “finally started” with a new cardio? Well, I’ve been having a lot of problems with my old cardiologist. I’ve been seeing him since my POTS diagnosis (he’s the one that gave me the Dx), and have always left each appointment with a “I don’t know about this” attitude. Dan also didn’t have much confidence in my old doctor, and we were struggling with my POTS a lot. Every time I went in, I felt like my concerns weren’t listened to. I would tell him I was still extremely dizzy and he would just reiterate that my “numbers are fine” and not come up with anything. A few times, he suggested that I get evaluated for ear problems. My ear specialist is almost positive that my ears are fine, and I’d tell my cardio that, and his responses always felt very similar to “it’s in your head.” The final straw was when I tried to mention my freezing toes.

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My Dysautonomia Awareness Products

As I’m sure you all know, I have a Zazzle store to sell my photography and other things! I also have a wide variety of chronic illness awareness products available for sale, including DYSAUTONOMIA PRODUCTS!!!

I know Dysautonomia Awareness Month is technically coming to a close soon, but we need to spread awareness all year long! I have a great selection of products in my store including:
 

 

 

 

 

 

 
 
What other products would you like to see?
Do you have ideas for designs (I’m still experimenting with design software)?
Any [non-copyright] phrases you’d like to see on something?