So, it’s been over a year since I last posted. There are a number of reasons for that. First, things got much worse, then things got much better. Today has been the apex of years of emotions and symptoms related to Lupus that have kept me on a rollercoaster in life.
First, let me tell you what had happened before this momentous day. For almost three years now, I have been experiencing unexplained light headedness, headache, dizziness, weakness in the knees, fatigue, and general malaise. I had even passed out on a couple of occasions. I have seen a physical therapist, a dermatologist, a endocrinologist, two cardiologists, my rheumatologist, a chiropractor, and a number of other health care professionals to try to find out what was going on. They almost categorically dismissed my symptoms and told me, sometimes in more or less direct ways, to just ‘deal with it’ or ‘get over it.’ Thinking I was losing my mind and suffering terribly from depression and anxiety over these unexplained episodes, I went promptly (well, as promptly as Duke medical’s wait list would allow me) to a psychiatrist to figure out if I was, in fact, crazy. Thankfully, both the psychiatrist and the psychologist who she recommended me to for Cognitive Behavioral Therapy, reassured me that although I was anxious and depressed, it was being caused by the physiological symptoms that I was experiencing for a prolonged period of time. So, things were really bad, but also getting better because I was being treated for my depression and anxiety with therapy sessions that taught me to not let my physiological symptoms render me paralyzed by fear. This therapy has been a god-send, but I am sad to admit that I was afraid to share that I was seeing a therapist as our society still has not accepted mental illness as an illness just like any other. Mental illness as simple as anxiety and depression are still stigmatized in our society, and very misunderstood. However, one thing that I have learned from this experience is that when I open up about my challenges with anxiety and depression, others have opened up to me and shared their own similar experiences–apparently the reportedly rising rates of anxiety and depression in our country are not a fluke. It seems many are suffering from symptoms of anxiety and depression. So, first, let me tell you, I was low because I still felt crummy for quite a while, but I was improving greatly with dealing with my symptoms thanks to therapy.
However, nearly a year after beginning therapy, I still was having symptoms of lightheadedness, blurry vision, difficultly breathing, fatigue, etc. The same symptoms that so many doctors had dismissed. However, my wonderful rheumatologist referred me to the Syncope clinic. I have learned through this process that “syncope” is the medical term for passing out. When I first met with the cardiologist at the clinic, she was amazing, she listened to me, took some readings, and decided that I *MIGHT* have POTS (Postural Orthostatic Tacychardia Syndrome), a condition characterized by an increase in pulse of 30 beats per minute without much rise in blood pressure within 10 minutes of standing that can cause these symptoms I was experiencing. She recommended I increase my salt intake, maintain my exercise regimen, and increase my fluids. I was set to return in a month for a tilt table test which would help her make the final diagnosis. So, for the past few months, I have been putting salt tabs in my water, drinking gatorade, eating more salty foods, maintaining my exercise, and drinking much more.
So, flash-forward to today, the day of my fated tilt-table test. After three years of searching, I have to admit I was not very hopeful that this test would show many results since up to this point, nothing had helped me get a diagnosis. I arrived at the hospital at 9:00 a.m., checked in, and was led to a room to change into those lovely hospital gowns and grip socks they give you. Two nurses entered and started an IV, took some blood, asked me a ton of questions, and unsuccessfully got an oxygen reading on me, due to my Raynaud’s disease preventing enough circulation for the finger monitor to pick up anything. After waiting around an hour or so, another nurse, and assistant, and the cardiologist, Dr. Frazier-Mills, came in, had me sign a release form, and I was wheeled into the procedure room, which I promptly told the crew was the scariest room I had ever seen–there were machines and monitors EVERYWHERE. By this time, I had been reclined for about two hours, and was feeling kind of nervous. The nurse, Amy, and her assistant were trying to get me hooked up to the EKG, keep my IV working, and use a finger cuff to monitor internal blood pressure during the test. Of course, because of my fun Raynaud’s, the finger cuff was unsuccessful, but the nurses and doctors had really tried to get a reading, bringing me heat packs, and about 9 heated blankets (this is not an exaggeration). Unfortunately, when the finger cuff failed, they had to page the anesthesiologist on call to insert a catheter into my wrist. If you don’t know, a catheter is similar to an IV but is inserted into an artery instead of a vein. The insertion requires first a numbing shot of local anesthesia followed by insertion of the cath. Unfortunately, lucky me again, my cath wouldn’t enter on the first time and I was in a great deal of pain for a bit when the anesthesiologist was pushing into onto a nerve that hadn’t been hit with the numbing meds yet. So, he called in his nurse, they took an ultrasound of my wrist, inserted more numbing meds and successfully inserted the catheter. If you have never experienced this before, I would liken it to feeling like Katniss in the Hunger Games when she’s inserted with her tracking device. Not terribly painful, but not a lot of fun either. Then, there was another hiccup when the tubing connecting the catheter to the blood pressure machine was causing a false spike before each heartbeat on my echocardiogram. The doctor finally decided that it was the best they could do, and she would subtract out that extra spike from all the data. Finally, once everything was hooked up, they were ready to start the test.
The test involves strapping you onto a reclined bed with straps across your lower and upper legs and torso and your feet planted on a flat board at the foot of the bed and then elevating you to a 70 degree tilt up, so that you’re almost vertical. Let me tell you, it doesn’t feel “almost vertical”–it feels like you’re standing erect. While you’re in the tile position, they ask you to describe your symptoms and rate them in severity from 1-10. Things were going OK. I was sweating a lot, my legs felt like lead weights, I was shaky and flushed and weak in the knees, but none of my symptoms climbed over a 4 in the first 10 minutes. However, my heart rate steadily inclined as my blood pressure remained the same, and I hit the magic POTS diagnosis number just before the 10 minutes were up. The doctor was talking to me, about POTS and telling me that the first part of the test was over but that the second part would probably involve other techniques to provoke stress and see if she could make me pass out. By the way, the goal of the tilt table test is basically to get you to pass out–I mean really they’re looking for certain cardiac behaviors and responses, but those responses typically make you pass out. Since I was still not above a 4, the nurse took a blood sample from my catheter. While she was finishing, I suddenly got feeling really sick. I was nauseated, sweating buckets, and felt like I was going to pass out. My hands went numb, my lips went numb, my vision came in and out, and I couldn’t breath. I was half crying-half moaning, which is embarrassing to admit now, but apparently that’s what I do when I’m about to pass out. I was pleading with the doctors to lay me back down, but they needed me to pass out, so I just gave in. As I was losing consciousness, the doctor and nurse came up beside me, and tried to get me to breath deeply while holding my chest. I finally recovered a bit to speak and asked would the doctor lay me back down. This time, she obliged, and I was thinking that I had failed the test by asking to be reclined. Meanwhile, the doctor and nurses are bustling around me checking things and getting a cold washcloth. A few minutes later, I ask the doctor sheepishly how many more times I have to do the test. I thought since I had asked to lay down that I would be forced to try again, this time with other tortures alluded to like putting my hand in cold water or injecting me with nitroglycerin to provoke a stress response, so I was preparing myself for another round or two of the misery I had just experienced. Instead the doctor just laughed, and said that we didn’t have to do it again because I had reacted “organically” and that my blood pressure had dropped from 134/80 to 74/58 and then to 54/38 and then had recovered slowly after the episode was over. I was so relieved to not have to do the test again that I didn’t even care that my catheter was killing me and I was laying on my IV cord that was twisted up behind me as I moved back onto the transport bed. The doctor disappeared for a few more minutes while the nurses unhooked me from everything, drew more blood, and prepared me for recovery. When the doctor came back in she said the blood samples were to help rule out certain causes of POTS, but that I definitely had POTS, demonstrated by my symptoms and readings in the first 10 minutes of the test, and that she believes I have Neurocardiogenic Syncope, which was the episode of blacking out I experienced when my blood pressure dropped suddenly and then slowly recovered on its own at about minute 15 of the test. After doing some preliminary research, it appears that Neurocardiogenic Syncope is caused by blood pooling in the legs upon standing and may be caused my strange bracychardia during this occurrence. I still don’t know much about the condition. Treatment for now involves abandoning the med that improves my symptoms of Raynaud’s, the amlodipine, increasing my salt and fluids intake and continuing with exercise, fidgeting constantly while sitting or standing to maintain blood flow to the extremities, and wearing extremely tight but sheer thigh-high compression socks that will help to improve the pooling of blood in my legs. If these things do not improve my conditions, further treatments include first, second, and third round medicines, and in some cases, pace makers.
After my test, I was wheeled back to a recovery room where I was given IV fluids for 2 hours and then wheeled out to the parking lot to be driven home. I left the hospital around 2:30 p.m.. I had arrived at 9:00 a.m. and the entire test with recovery and all was predicted to last 1-2.5 hours. Mine was 5 hours. However, I do not mind. I am SO THANKFUL that my condition finally has a name and I finally have a diagnosis. This monster that has been plaugeing me for three years finally has a name: POTS with Neurocardiogenic Syncope. It might not seem significant but it is for two reasons. First, you can’t treat a problem until you know what it is–I now know what it is. Second, the unknown causes fear, but when you can name what you’re feeling and label what’s causing you symptoms, it’s not so scary anymore. In fact, it seems completely manageable now. Questions still remain: What causes these conditions? Why do I have these conditions? Are they related to my Lupus–I suspect they may be since autoimmune conditions can cause POTS, although I haven’t found a ton of research about it. Will the treatments be successful? What are the possible side-effects of other medications? Will I really have to wear those compression hose for the REST OF MY LIFE–ugh!? Despite all these questions, I am content for now to know that my monster has a name, and that it can be treated. In the mean time, I’m resting as it takes most people a couple of days to recover. I can still tell, writing this post, that my brain is still a bit scattered and my body still a bit shaky, but it is worth it to know that I am NOT crazy, that this is NOT psychosomatic, and that someone finally heard what I was saying and was able to identify my condition.
If you want to read more about my condition and its treatments, see the article I found below: http://www.dynainc.org/docs/ncs-pots-combined.pdf