My symptoms first started in June. For a couple of nights in a row, when laid down to go to sleep, I had chest pain, pressure that felt like my lungs were collapsing, and a lot of trouble breathing. Naturally, these symptoms also kept me from sleeping well. I first went to the Doc in the Box, who told me I might be dying but he couldn’t do anything about it because it was Sunday, after all. I foolishly returned to that same DitB three days later, but saw a different doctor, who diagnosed me with asthma, based solely on the fact that I couldn’t breathe as hard as I should be able to.
Like a good little patient, I got an inhaler and began using it. Not so helpful.
A couple of days later, my original symptoms had gotten worse, and added to them were two instances of blacking out, not really a great hobby to frequent when home alone with two children who are small and/or self-absorbed enough to be completely disinterested in the fact that their mother went from standing to crumpled.
A few days later, I was able to get an appointment with a specialist at a very highly regarded clinic here in town. Over several long weeks, they tested me for pulmonary problems and heart failure, along with a variety of blood tests, but everything came back normal except for a jumpy and at times abnormally high pulse.
During that time period, I had good days and bad. I had a minor wreck, most likely caused by the growing disorientation that I was experiencing. I added to my symptoms panic attacks (but only in my sleep, creatively enough), and had a couple of hallucinations, where things that weren’t moving all of a sudden were. There was a lot of head pressure and pain, and my difficulty breathing and lightheadedness grew worse.
But the worst part was my rapidly decreasing ability to process life. Chris would mention a friend’s name and I would have zero idea who he was talking about. Writing became excruciatingly painful, and my creative spigot slowed to a trickle. I couldn’t make myself do fun things with the kids, because I didn’t have the energy or the ability to interact in chaotic situations.
Thankfully, one of my best friends suggested that I look into Dysautonomia – her sister-in-law had it, and my symptoms sounded identical. I reluctantly Googled my health (something I had desperately been trying to avoid), and was shocked. It explained every single different thing I was feeling, including even the eye problems and anxiety I had struggled with at the beginning of the summer.
Everything.
A week later, another friend mentioned her own Dysautonomia on Facebook. So I messaged and quizzed her relentlessly about her symptoms. Again, identical.
From what I gathered, Dysautonomia is a nervous system disorder (and therefore can affect many systems at once as I was experiencing), and one of its main physical markers is the inability of the heart to react to changes in gravity (laying, sitting, standing), made apparent by low blood pressure and high pulse upon change. So I bought a blood pressure cuff and began tracking for myself.
On the days when I didn’t feel good, my blood pressure would be super low (90/50), and on the days where I felt fine, it would be normal (110/70).
I started tracking this a week before my next appointment and reported the findings to my doctors. Autonomic issues had also been on their possibility list, so they gave me a simple test: lay down, take my blood pressure, stay laying down for five minutes, then stand up, immediately taking my blood pressure again. I had an “autonomic response,” meaning that my body did not adapt, and my pulse increased to try to keep my blood flowing.
For the next couple of mornings, I tested myself when I woke up. I’d take my blood pressure while laying down, then again when I stood up (slowly, so I didn’t black out.) My resting pulse was already high (70+), but it would still nearly double every time (120-135) just from standing up.
All of the head pressure and constantly feeling faint made so much more sense.
My doctors currently have me in the testing process to determine if another disease is causing my autonomic issues, or if it is Dysautonomia itself.
I haven’t started deeply researching Dysautonomia yet, but that’s next on my list. I’m equally surprised by how many women that I know have Dysautonomia and how many people have never heard of it. But what I do know is that Dysautonomia can be completely livable or crippling – there’s no way to tell, and there’s no cure. If it’s bad enough, there are heavy medications to try and help make the symptoms better, but my body responds very poorly to almost all prescription medications, so I will be avoiding that if possible.
There are, thankfully, a lot of lifestyle changes that can really help: lessening caffeine, cutting out artificial sugars, drinking ridiculous amounts of water, giving up things that make you lose salt and water (such as carbonated drinks), and getting a lot of rest. I’m doing all of these, and also quickly realizing and avoiding the triggers that make my cognitive symptoms worse.
I’m still having days where I feel normal and days that I can barely function, and mostly days that fall in between those two extremes. On the bad days, drinking even more water and taking Sudafed (to raise my blood pressure) helps sometimes. But on most days, it’s taking me twice as long to accomplish things (especially writing and all that goes with it.) Additionally, Ali and I will be starting school next week, and I am praying that I have the energy and presence of mind to teach her diligently.
I’m in a very uncertain stage as to what this all means. I hope and pray that in a few months, I can say that I’ve figured out what works for me and that my symptoms are completely under control. But until then, I might move at a slightly slower pace than usual.
An update can be found here.
Oh dear!! take care.. Praying for your speedy recovery. Get well asap…!
Rachel, I bet all this has been so scary! What a relief it will be to know for sure bc then you can start getting better. I have never heard of this either. Please keep us updated when you want to.
I will keep you updated! Oddly enough, there are a lot of people at my church and around me that have it – I knew of a couple before I researched it, but now I’ve found so many more.
Uncertainty is always terrifying. You are in my prayers.
I pray for you and your doctors to find the right diagnosis and treatment. Isn’t it weird but my first thought on reading this was: “oh my gosh, that’s what Greg Wiggle had!” You know, Greg the guy in the yellow shirt in that kiddie group. They were all the rage when I had toddlers circa 2002-05 and we watched them in an endless loop. He left the tour at one pint due to his symptoms. Sure enough I googled it and it’s the same disorder. Thought you might find that interesting. Take care of yourself!!
That’s so bizarre! Especially since it’s much more common in females. I’ll have to Google Greg Wiggle!
Rachel, I understand the fear and anxiety that goes along with numerous symptoms, varied tests from seemingly unconcerned doctors, and a change of lifestyle. 15 years ago this past Spring, I was diagnosed with MS after a myriad of symptoms and horrible tests. A lot of your symptoms sound very similar to mine and all the steps that you have taken are the same that I had to take. At the time, my doctors knew nothing about the disease as far as the ‘living with it’ portion went. All of the things that I changed about my diet and lifestyle were trial and error until I found what worked for me.
Although I only ‘know’ you from your blog, I can tell you that you already have everything you need to face whatever it is that you have; grace, pluckiness, and humor; the latter being the most important.
Stay strong.
Oh my – that IS scary! MS is nothing to take lightly I know. I will be praying for you! Are you in remission right now?
Oh Rachel, I am so glad you finally let us know all of this. Will certainly keep this situation in my prayers. You have a great positive attitude and I am sure that is going to help you along this journey. Looking forward to hearing more updates from this and praying for strength for you as you make the necessary life changes.
I’m so sorry that you are going through all of this. I am really glad someone was able to show you what you might have though, I know that helped a ton for us when I was told all of my baby’s symptoms in his new little life sounded like silent acid reflux and we were able to get medicine and man was that a great change! I hope the doctors are able to figure out a good diagnosis for you and that your body will react positively to whatever they prescribe. I would also highly recommend alternative medicine. Glad you are already learning some alternative ways of helping yourself. I love your blog and I hope your creative juices will continue to flow for you! But more importantly I hope your health and home life are improved.
I know exactly what you’re going through, too – baby issues are so scary! Both of mine had silent acid reflux, too. Hopefully y’all have it all figured out!
Glad you are finding some answers. Prayed right now that God would give you everything you need in HIM as you move forward…and some practical changes to maintain <3
Bless your heart! (And not in the snotty southern way) I will add you to my prayers.
Praying for you that you can find what works for you easily, and that the symptoms ease up quickly.
Rachel, I’m so sorry you’re in such a difficult season. 2 of my closest friends, who are sisters, have disautonomia. Apparently it is genetic. Their symptoms were both all over “the map” and it was difficult to diagnose. One of them thought they had a heart murmur and had to wear a heart monitor for a while….very scary. I’ll be praying for you & Chris & the kids. Let me know if you need anything! I’d be happy to bring y’all dinner sometime or take the kids to the park to play {Anderson would LOVE it} so you could rest.
It is genetic, so I will be keeping a close eye on Ali in a few years. I hope your friends are doing well now! And thanks for the offer to help – you’re too sweet!
I’m sorry, Rachel… Praying for you.
Oh Rachel! I’m so sorry to hear you’re going through this. You’re in my thoughts.
Dear Rachel, I also have never heard of this, but I hope you can find a way to continue life as it was before! Just writing this to let you know I’m thinking of you!
Thank you so much! I hope everything goes back to normal soon also!!
That all sounds very scary! I will be praying for you!
And whether you write your blog every day, once a week, once a month or once a year, I will still be reading!
Thank you so much! And thanks for the vote of confidence – I put way too much pressure on myself.
I’ll t praying for strength and clarity for you as school starts, and for wisdom and help for the doctors in finding out how to help you best!
Praying that things settle down for you and you feel better soon
That is scary, I hate unknowns. My thoughts are with you!
I’m so sorry you are going through this.
Oh sweetie, I’m so sorry you’re having to go through this :( I myself am in a similar boat, and have recently been diagnosed with a neurological genetic disorder that will leave me in a wheelchair in ten (or fewer) years, with no cure as well. I can understand the roller coaster of emotions that goes on it finding a diagnosis and then coming to grasp with the day to day reality.
You are in my prayers, and if you ever need to vent or a (cyber) internet to cry on, I’m here for you.
((hugs))
Oh my goodness, I didn’t know that! I’m so sorry. I will be praying for you!!
Wow Rachel! I knew something was going on, but not something like this! Thoughts and prayers they find answers (and more importantly, solutions) SOON!!
I will definitely be praying for you. I had never heard of it before either.
Love you. Praying. Holler at me if you need anything.
I hope you know my prayers have been with you since this started. Prayers that the doctors can find something to help and not harm you, prayers as you change life habits, prayers as school starts and prayers that God will put a healing hand on you and this might disappear.
Holy cow! I knew you had had some tests done this summer but had no idea of the severity of your symptoms. I am so sorry. I hope you find what works for you soon.
Praying for you my dear friend.
I’ve never heard of that disease. I loved this post because it was informational and about a medical issue, but i wish you didn’t have to put up w it!
Thanks! It’s fairly common around here, for whatever reason. I’m wondering if there’s a regional reason or something.
Trusting that all will be resolvd in the best way possible, you are in my prayers.
Sending lots of prayers of peace to you, an accurate diagnosis, and steadfast treatments.
Oh my goodness! I am so sorry that this is happening. I am praying for your healing.
Putting on that brave face day after day is tough. Allow time for breaks and a nap. I am amazed at what an afternoon nap can do to regroup and energize you. Having my own medical problems I know that life has days that totally suck. But it is your attitude that makes the day. I get so angry on my bad days. Angry at my body for failing yet again. But after hearing my kids worrying about me I had to really turn myself around and change my attitude so I wouldn’t take it out on them. It is tough. I wish you the best! Sending a smile and a bunch of prayers your way.
Thank you for the reminder! You’re right – I tell my kids that their attitude controls their day all the time, but I’m not nearly as good at doing it myself.
Oh my goodness! I am praying for you and your family! I’m so sorry you’re having to deal with this (especially the unknown part!)!
Rachel, I am so sorry you are going through this! I am praying for you and your family. Thanks for posting all of this as I’ve been concerned and now feel like I can pray more specifically.
Rachel, I am so sorry all this is happening to you! I’m glad that at least it has a name, and therefore a treatment. Not knowing is almost always worse. Know your fans in Atlanta are praying for you!
Thank you so much! Yes, definitely getting to the point where we all agreed to the direction that we needed to go was a relief. Because whether or not it had a name, I knew something was wrong, so giving it a name was a helpful step in the right direction.
I will also be praying for you, Rachel. So glad you also know the One who knows all our unknowns. May you feel His peace surround you.
Wow, Rachel! I’m so sorry to hear of your struggles. Things like that never seem to happen at a good time, but I’m praying God will give you the grace, strength, creativity, and whatever else you need to do all that you need to do as a homeschool mom!
Ooh, poor you! That sounds pretty stressful and scary! I’m glad you’re heading towards some ideas of what it could be and some treatments. Good for you for not being brushed off by doctors not wanting to put effort into finding out what’s actually wrong with you.
Just popped a quick prayer that you’ll be okay.
I had CFS/ ME for a few years (was bedridden for a couple of years from 16 to 18) then slowly got better for a couple of years. Unexplained and vague symptoms suck! As do things without clear treatment. I tried all SORTS of things.
Anyway, God bless you and give you as much peace as possible. Do make sure you lean on family, friends, church as needed instead of trying to do it all and carry on as usual. Come up with a plan b if you’re not well enough to homeschool, for example. I’m sure there are heaps of people who love you and want to help.
Thank you so much! I remember you talking about being bedridden for a while – I can’t imagine how hard that was as a teenager!
And yes, I’m trying to accept help and lay off myself a little bit (difficult for my Type A Personality). Thanks for the reminder!
Praying for answers and wisdom for those (silly but getting increasingly less so) doctors, and patience for you as you go through those (sometimes downright nasty) medical tests. Also praying for answers. Stay strong!
Keeping you in my prayers! I had some weird stuff going on with my heart last summer at about this time (very strong palpitations like my heart was literally going to beat out of my chest, couple of passing out episodes, some chest pain, etc) so I definitely sympathize with the barrage of tests and not knowing what’s going on. I never got an answer, but made some lifestyle changes that mostly cleared up the symptoms by fall. Then this summer I went and got knocked up (on purpose) and now my body is doing all sorts of weird crap again. Having no reason for strange, scary symptoms is way worse though!
Oooh yes, pregnancy can do a number, for sure! I’m glad your symptoms from last summer went away, though!
I’ve never heard of it, but glad they are finally having some answers for you. Will be praying for you, especially as you start school!
Wow, what an overwhelming bunch of stuff! I will certainly put you in my prayers. I am amazed at how gracefully you are handling all of this, you are an inspiration . Being a teacher while experiencing times like you are facing sounds really tough. But you seems to be able to handle so much so wonderfully, I wouldn’t put it past you for a second. I know I only know you from reading your blog, but come on, you have been dealing with all of this and you continue to blog, enough said! You are impressive.
Again, prayers will be said,
Julie
Thank you! You’re too kind. We’ll see how I do once I start teaching – breakdowns may be imminent! :-)
Rachel, thanks so much for sharing with us now that you have a diagnosis. You’ve been in my thoughts and prayers since you began posting the photos and stories of doctors’ visits.You are lucky to live near family who can help and a fairly self-directed Ali. Does she know what to do if you do pass out? Can she call Chris?
Thank you so much! Yes, my family has been a HUGE help, especially since I’ve had so many doctor’s visits this summer.
I’ve tried making sure she knows what to do, but I honestly have no idea how she’d react in an emergency situation. Hoping I don’t find out!
Really, really hoping that it turns out to be manageable and treatable … in whatever form that takes. Praying for you, friend!
Prayers for you, Rachel! What a tough thing to go through, especially when caring for small children!
You will be in my prayers!
I will definitely be praying for you and your family. I’m sorry it has been so rough for you guys lately!
More prayers for you! I’m sorry you have to go through this.
What a terrifying time! Prayers that you will find the right solutions to help you manage your symptoms and get you back on your feet (without dizzyness!) On a lighter note: is it Football Season yet?! I need to see some Alabama sorority girls wearing Uggs and shorts with houndstooth!! =)
Thank you so much! And yes, I was just wondering today what the Boot-Of-The-Season was.
Since you love Alabama trivia so much, you will be pleased to know this little nugget:
Yesterday was municipal elections in Tuscaloosa, and apparently a former Greek-System Student was running for something. So naturally, they offered limo rides and free drinks to sorority members to go vote. Here’s the article: http://blog.al.com/tuscaloosa/2013/08/sorority_offered_free_drinks_t.html#incart_2box
And there’s a slice of Alabama for you.
Oh goodness, Rachel! What a difficult time this season must be for you. Glad you are getting some answers and hopefully you will start to have some improvement.
Thank you so much! Yes, we are hoping for answers as well. Or improvement – I’d take either.
Rachel I’m soo sorry! I’ve been offline for a while and had no idea you were going through such an awful time! Prayers aand thoughts for you all.
Thanks so much! I hope you’re doing well!