The Stress Test….

…is almost as bad as a tilt table test. I’m not a fan.

An important thing you need to know is that I’m in shape. I’m thin, I walk everywhere, and I have decent muscle tone. I mean, I’m not going to be running marathons any time soon, but I can walk up a hill without wanting to die. So the whole crazy heart rate thing? Yeah… it’s just my heart being a jerk. I’m not deconditioned.

The stress test started with the placement of a few hundred electrodes (this might be an exaggeration.. maybe..). I looked like I got attacked by an octopus. I was then left alone in a room to wait until the doctor showed up. The majority of the time that I was sitting in that room, calmly reading (Game of Thrones… ), my heart rate was in the 100s. Interestingly my heart is apparently not a fan of coughing which caused it to shoot up to the 130s. When the doctor came in to start the test he did note that it was crazy to have a resting heart rate so high. He told the tech that it must feel so awful to have a heart rate that high all the time. Speaking from personal experience? It does.

Upon standing up, my heart rate jumped to the 130s. A diagnosis of Postural Orthostatic Tachycardia Syndrome (POTS) requires an increase in heart rate by either 30 beats per minute or a heart rate greater than 120 beats per minute within the first ten minutes of standing. I met both of these criteria. To my surprise, the cardio actually brought up POTS (he’s heard of it!!) and was asking whether I have POTS or Inappropriate Sinus Tachycardia (IST).

Overall the Stress Test was fairly normal (I call it my normal abnormal). While my heart rate was extremely high during the test and while I did have a few Premature Atrial Contractions (PACs), it was still fairly normal. Way to go heart… act normal when there’s someone watching, but I know how you really are… Seriously, I’ve had monitors show any number of things including: intermittent bundle branch block, a-flutter, SVT, PAT, couplets,  triplets, and PACs that drop my heart rate by a 100 beats in one minute. Think any of those would come out and play? Nope. But that’s fine. I’m patient (Ha. Ha. Get it?).

One thing that was achieved however was that my cardio changed his mind about the beta-blocker. At my first appointment, he wasn’t thrilled to see me on one, but prescribed it anyway. Today, when he saw how my heart reacted, his first words were “yeah, you really do need a beta-blocker”. He also said that once I move I need to find a new cardio and an electrophysiologist. I’m hoping he’ll help me find one and will refer me. He said that where I’m moving has excellent doctors, so that is encouraging.

Ironically, the stress test did stress me. While my heart may have been behaving unusually well, I did have brown urine after the test. Usually the brown urine, for me, signifies blood in my urine along with a CK  level outside of the normal range. While I was somewhat expecting that to happen, it doesn’t make me happy. It shows that 12 minutes on a treadmill is enough to start the muscle breakdown process and is too much of a stress on my body to go unnoticed. I’m not sure what exactly that means or what causes it, but it frightens me that it is now a consistent consequence of pushing my body too hard.

Really, I’m just looking forward to sleeping for a few days now.

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My average day: living with Ehlers Danlos and its little friends act 2

The good, the bad, and the ugly (oh, and it was ugly…)

Some background story to this day:  at around 3am I tried to go to sleep. I usually have problems sleeping so like the idiot I often am (as far as my health is concerned) I sometimes drink an alcoholic beverage to help me off into dream-land. I nursed one drink over a period of four hours and then finally went to bed at 3am. I got home from work at 11pm, so the 3am is not as bad as it sounds!

So my day officially started at 6am, when my alarm went off to take my meds. I got up and was instantly light-headed and nauseous. I quickly realized that the whole “being vertical” thing was not going to work for any extended period of time, including what little time it took to find my meds and take them. This happened with my finding the bottle, dropping the pill, leaning over and puttying my head between my legs to gain enough time to find the pill before fainting, find the pill, take it and then fall back into bed. I woke up again at 8am feeling much more nauseous and headed to the bathroom (Yay! I had at least dropped the whole light-headed business!) in order to spend the next half hour or so hugging the toilet throwing up. Now, I get that this is probably my body’s equilibrium being totally thrown off by the ONE alcoholic drink I had over a four hour time period, FIVE hours prior to the throwing up incidence, but it seems a little extreme. All this to say… my body gets grumpy. Soooo after the bout of throwing up, I went back to bed (Thank God my first class was at 1pm. I got to…attempt…to sleep in!). My alarm went off for a second time at 12pm and I hit the snooze, but quickly realized that the snooze was not a good idea so back off to the bathroom I went! This time, however, it was the other end that was grumpy (I had promised the ugly remember?). So I spent the next twenty minutes on the toilet having an attack of diarrhea only to find out that the there was more blood than anything else in the toilet bowl…seriously, the water was pink with deep red on the bottom. This whole blood in bowel movements is not a new thing for me, but this time had a LOT of blood. I probably should eventually make that GI call and go through with the colonoscopy, but I’m a chicken. 

Twenty minutes on the toilet gave me a lot of time to flirt with the idea of skipping class or not. I even went as far as to open my email and start composing a “Hi, I’m sick..” message to my professor before deciding that going to class was probably in my best interest, at least as far as my neuroses about my grades are concerned. So I trudged off to class and sat in the class feeling half-dead while I semi-listened to what was going on. After class I went off to my research lab and did some of the dishes (ie. autoclaving beakers and flasks) then went off to lunch with my lab-partner with a brief stint in the college book store. I laid on the floor in the book store while my lab-partner tucked a college teddy-bear in my arms. I don’t think he knows what to do with me half the time when I’m sick. I mean, technically I’m always sick but it does go through periods where it’s worse than normal and I’m not as capable of hiding it. 

So now, I’m back at home feeling entirely spent and exhausted. Lately things have been rather grumpy for me (LOTS and LOTS of pain). At least for the most part though, you wouldn’t have been able to tell I was feeling so sick 😀 I still act and look completely normal and healthy. 

My average day: living with Ehlers Danlos and its little friends act 1

The problem with having a rare illness, whether it is rare because it simply doesn’t occur often or because it is under-diagnosed, is that you don’t know how it can affect you. Every ache or pain or abnormal symptom could be from the rare disease or it could be something new. So eventually you start to look for others’ who have the disease and you form a community (There are many amazing Ehlers Danlos groups on facebook) and in this community you are able to share similar symptoms and eventually get to know what to look for in the disease and what to expect. When I was first made aware of this disease I scoured the internet to find patient experiences and what actually living with the disease was like. You can read a medical link that will tell you which symptoms are associated with Ehlers Danlos, but it doesn’t quite compare to knowing what a patient deals with on a daily basis. So I plan on dedicating some blogs to that daily experience. This is the first one:

 

Living with EDS and its friend POTS (Postural Orthostatic Tachycardia Syndrome):

My day started with my alarm going off at 7am so that I can take my medications. I go back to bed (Thank God! I have enough trouble sleeping as it is!). I wake up about a half hour before my alarm goes off due to the pain in my lower back. I curl up in the fetal position to try to alleviate it some before I have to get up and be active. The alarm goes off and I reluctantly get out of bed, feeling as exhausted as I did when I went to bed the night before. I walk around my bed, in order to open my blinds, cracking various joints in place as I walk. *crack* there goes my left hip, that one’s a “trouble” joint for me. *Crack crack crack* and now we have left knee, somewhere in my back, ankle.. I finally get to the window and decide to stretch. Big mistake. I get lightheaded, dizzy, start to loose feeling in my extremities and can no longer see. I thrash out, hitting a teapot and then fall to the ground as I fully lose control and start to twitch and spasm. Within a minute or two I gain back my senses, wake up enough to realize what happened and to stand back up. Luckily this time I fell on a pile of pillows that I took off my bed the night before. I check my teapot to make sure I didn’t break it on the way down (Yay! It’s still good!) and finally open the blinds. I then take a shower and go about getting ready to go into my research lab (Bio major grad students unite!). 

While in the lab I take in all the various aches and pains. The muscles of my legs and back hurt. My back muscles are visibly swollen and feel like a rod running up along my spine. I guess that’s from the hypermobile spine and the extra work the muscles put in just trying to stay vertical. I sit down in lab as often as possible. Standing hurts and I begin to get light-headed if I stand for too long so I’m either sitting or leaning against something. At one point while moving around in the lab I experience a run of palpitations. I just ignore the “flip-flops” going on in my chest and continue my work. Also while moving around the lab, I’m in constant pain from my unstable joints. You can hear *Crack! Pop! Snap!* as I move as the joints constantly shift, some subluxing and then relocating. I finish with the work  in the lab and make a trip to the hospital to see if some of my test results from the day before are available yet. The EMG resutls are in and yay for no myopathy or neuropathy! Although I am disappointed that I still do not have an answer as to what is causing some of my symptoms. I do have some difficulty reading the results. Lately my eyesight has gotten very blurry, especially with writing and it is causing me to have significant difficulty while reading at times. I’m hoping the MRI results will shed some light on possible causes. I’m also waiting for the results of my MRA before I can start my one new medication (Midodrine). I want to make sure that there are no abnormalities in my brain vessels before I start a drug that is known to have dangerous elevations in supine blood pressure.

Then I go get lunch. I don’t eat breakfast because it makes me sick and nauseous to eat so soon after waking up. For lunch I eat at Taco Bell. I used to love drinking their flavored Mt. Dew soda, but I can’t handle the caffeine anymore. It shoots my heart-rate up to 130+ easily and causes horrible heart palpitations. So now I settle for drinks that do not have as high of a caffeine content. Once I’m done with my food, I struggle to get out of the seat. I was sitting in a booth and unfortunately I have to get out on my left side. Being my “trouble joint” and all, my hip likes to slide out of place at any given opportunity. So I support myself on the table and *crack* my hip back into place before I’m able to put my full weight on it. Before I learned this little trick, I used to try to place weight on it right away and would get a STABBING pain and fall as my hip gave out, unable to support the weight. Thankfully I’ve realized its game. Every now and then I forget and do fall though. 

After lunch my day’s over! So here I am writing this blog. I’m currently laying on my bed typing away. My back hurts from being in the same position for too long. My ankles are unhappy with their positioning as well. The knees are starting to ache and eventually I’ll have to move them. My wrists are not pleased with the typing (*crack* *crack*). This is my average amount of pain. It is manageable and is no where near as bad as it can get. This is also a relatively lazy day for me. It’s spring break and classes are not going on. I am trying to take advantage of the chance to rest.

That ends today’s activities and I believe it’s time for me to get off the computer. The words are blurring together and my wrist has *cracked* five times now…err…six… within the past twenty minutes (seven -_- ). Definitely my disease presents some problems that I have to work around, but it’s my “average” now and as far as days go, this wasn’t a bad one. 

Until next time Dear Reader 🙂