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.
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).
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.
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.
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.
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.
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.
For 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.
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.
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 = 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!
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!
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.
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!)
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.
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.
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.)
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.
In 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
Thankfully, MSA is considered to be a rare disorder, with only about 350,000 patients worldwide. I say thankfully, because this condition is fatal.
MSA 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!
Donate to help find a cure: here.
Information for this article comes from Dysautonomia International! They are a fantastic source for information about dysautonomia!!!!
It’s easy to fall into the trap of only showing the negative aspects of chronic illness. When we’re “healthy” (for us) and feeling well, we tend to go out and live! When we’re sick and feeling awful, that’s when we think “I haven’t written in a while, and this is something interesting to write about.” If we’re just so-so then we’re probably doing something that we deem ‘boring’ and don’t write about it. I try to keep my blog focused on my entire life, not just the chronic illness pieces, but it’s definitely easier to write about the “bad times.”
However, I have been quite lucky lately: my body is cooperating. For the most part, I’ve been able to feel relatively normal in the past few weeks. No, I’m not ‘better’ but I’ve been able to do more than I had been able to do in over a year! My Pilates classes went surprisingly well, my physical therapy was going really well, and I’ve been able to be significantly more active day-to-day! Of course, I’m waiting to accidentally run off a cliff (metaphorically of course), but until then I’m really excited that my body is letting me be ‘normal’ most of the time! Continue reading
Fibromyalgia. It’s different for everyone that has it, but one thing remains constant: no one likes having it. 
Most people with fibromyalgia agree that it storms into your life like a hurricane, knocks you flat on your back, and takes up residence in your life like an uninvited house guest that just doesn’t take a hint!
Since everyone is so different, I will try my best to touch on the main symptoms that I see almost everyone suffering from, but my main focus is simply on my personal experience with fibromyalgia and what I have done to ease the symptoms I have. Continue reading
For me, summer equals significantly more physical activity. I’m sure most people that live in an area that experiences winter will agree: when the weather is “nice” we do as much as possible to try to make up for being inside all winter. When you are chronically ill, however, more physical activity can also equal significantly more pain.
My fibromyalgia is the main cause of my pain in the winter, but I experience different pain in the summer. I haven’t been able to figure out how big a role each of my conditions plays into the summer pain, but I have developed a few tricks for dealing with it. My summer pain is extreme muscular fatigue, joint pain, and an all over bruised sensation; I do experience nerve pain, but it’s usually do to a pinched nerve thanks to my joint problems instead of due to my fibromyalgia. I also have to juggle my dysautonomia which includes a lot of problems with temperature regulation (leading to overheating) and swelling. Continue reading
I made an appointment to see the only adult geneticist in the state of Colorado over one year ago. (Read more: here.) It was actually fourteen months ago. The appointment was because I wanted to know for sure if I had something more specific than the joint hypermobility syndrome my rheumatologist diagnosed me with (as a working diagnosis).
So I waited… and my appointment was just on Monday! I’m extremely excited about it, and it was one of the best appointments I’ve ever had.
I’ve hit the end of the road with my allergies, apparently. I went to my ENT/allergist on June 2nd, to follow-up about what the specialist immunologist/allergist had to say. Sadly, the super specialist just wanted to focus on my eosinophilic esophagitis (EoE) and didn’t care about the reason I was actually there: I would massively overreact to every allergy shot I got at doses most people don’t ever react to (even anaphylactic people). Even though they want me to come back, I will not be returning to the super-specialist because my EoE is being managed by my gastroenterologist and my ENT/allergist is more concerned with my allergies than them. Continue reading
When we first setup phases ½ and 1 of my LEAP diet (see this post), I was told to email Kara (dietitian) near the end of my ½ phase so she would know my progress. Unfortunately, with everything that has been going on with my health, the email was really long and not very happy. Because of everything going on, and my mental health struggles during this time, Kara decided that instead of doing the even stricter phase 1, we would liberalize my diet. Now, I can have all of my green foods and chemicals. I have to stick to tested ingredients only (with one exception), and I did go through the list and make sure I removed foods that were naturally high in the yellow and red chemicals.
The one exception to “tested ingredients only” is that Kara has allowed me to have Trader Joe’s Rice Milk. The ingredients list is exceptionally short and boring; it’s mostly just rice, salt, water, and some added vitamins. I already knew I loved their rice milk, and I was struggling without having a milk. (My homemade rice milk was disgusting.)
Some general rules for my “liberalized” diet:
Since my diet has been opened up a bit more, I won’t be doing the weekly roundups anymore. Instead, I’ll just post recipes (including those you have requested) that have worked out well for me. These won’t be on a regular schedule, because it depends on when things work out and when I can get pictures of them so I can write the posts.
Feel free to take a look back through my other LEAP diet posts and request any recipes you would like to see! I have a request for the tortillas (which I will probably get posted this week) and one for the sweet potato risotto (which will probably be posted sometime near the end of this week or early next week). Here are all my past LEAP diet posts:
If you have any good recipes using these things, please let me know below!
Finding Life's Silver Sun 