Fall Update

I love the fall. It is definitely my favorite season. We had been spoiled with pacific northwest sunshine and perfect crisp fall weather until a couple days ago when things took a turn for the worse and the rain set in. And when I say rain I don't mean light showers. I mean monsoons that result in massive puddles and darkness all day. Don't get me wrong, we desperately needed the rain because of all the forest fires we'd had lately. The air is much cleaner now that it's rained and I'm breathing easier because of it. Pesky sinus problems had been plaguing me pretty badly in September. I despise sinus headaches. (Any readers out there have any natural remedies for sinusitis? Not a big fan of antibiotics...)

But other than sinus issues that things have been looking up health-wise. Physical therapy is going well and I am blessed to be working with therapists who are familiar with both TMJD and EDS. Don't get me wrong, I still have aches and pains, but I haven't been dependent on round-the-clock tylenol as I had previously been. I have also discontinued taking 1/2 a flexeril at bedtime because it was giving me tachycardia all day long as a side effect or reaction. Most prescription drugs seem to disagree with my constitution. I had also grown tired of the daily tylenol for months on end. Especially after Dr. Oz mentioned how over-the-counter analgesics like tylenol and ibuprofen can lead to hearing loss after longterm use. Considering that my grandpa has better hearing than I do, it's probably not a bad idea to cut way back on the Tylenol consumption. My ears ring a bit and my grandparents both insist that I'm hard of hearing. Perhaps it's just because I prefer not to have to strain to hear the television. Or maybe being front row at all those concerts as a teen wasn't such a good idea after all. Or maybe it really is the years of chronic Tylenol use. But I have noticed the need to turn up the volume on my iPod lately.

I attribute my pain relief and improved POTS symptoms to two things. The first is that I have begun taking a multivitamin, extra C, and cod liver oil which has helped A TON with joint pain. I have also begun researching amino acid therapy after being inspired by what I read on lessflexible.com. A woman with EDS began an injectible amino-acid regime (monitored by a physician of course) and explained how it helped her become less flexible in regards to her hypermobility form of EDS (the same type I am afflicted with). I need to do a bit more research before delving into the complicated world of supplements but her personal experience sounds promising and may very well hold some validity.

The second is that the barometric pressure has been high and stable (with the exception of the barometer falling the past few days). I definitely tend to have more controlled symptoms when it is sunny but not hot and coincidentally when the barometric pressure is high and consistent. Like wearing a giant compression stocking. Thus a controlled, comfortable environment is very helpful for controlling POTS symptoms.

The fall has been filled with appointments. Trying to get well has become a full-time job. I am trying to fit in a bunch of random appointments before the new year since my deductible has finally been met. This means I will be continuing with physical therapy, a few more acupuncture sessions, adding massage and hopefully some counseling too. My EP also wants me to go to the autonomic testing lab at the university for autonomic testing and see one of their EDS specialists as soon as possible. I still have not proceeded with the upright MRI of my brain and spine as I am scared of what the results could show. I am also seeing a sleep specialist and an ENT before the end of the year. Too. Many. Appointments. But it beats having to pay for them next year so I am trying to be diligent and put in the time and effort to hopefully improve more of my symptoms. Fingers crossed for some decent doctors who aren't jerks and don't waste my time. On that note, I am digging the lyrics to Sara Bareilles' song, 'King of Anything.' Remind you of interactions with clueless know-it-all doctors much?

Medical Anxiety

After my first trip to the ER in over two years this past Friday night, I am still reeling. I was reluctant to even go because I hate hospitals, needles, blood draws, and everything associated with anything medically related. But my blood pressure was high, ironically, hovering around 190 over 130 for about an hour before I decided it was time to succumb to the fact that I may need some professional help to get it under control. My blood pressure had never registered that high before and it didn't appear to be a fluke. I was weak, dizzy, nauseous and felt feverish. My mom drove me to our closest ER and there we sat for about an hour in the sweltering waiting room before being escorted into the ER where they had apparently just experienced what the male nurse formidably referred to as a "code." A code what? I wondered. My mind automatically jumped to the worst conclusion possible and assumed someone had just died there in the ER and that was surely the reason for the waiting room holdup.

The sickening smell of saline solution and rubbing alcohol filled the air of my room where a friendly nurse about my age promptly drew blood and started an IV. I am certain she sensed my anxiety right off the bat as I instructed her to please take as little blood as possible because I was already lightheaded. "You're going to be just fine, I promise." That was reassuring. Really it was. How often do we ever hear a doctor say anything like that with such certainty? She then did an ekg and said that it looked beautiful, and at 96 beats per minute it wasn't even tachycardic. That also helped me relax a bit. What didn't help me relax was the fact that I ended up laying there for a good six hours sweltering with no food or drink and a small cup of ice chips that I had spilled on the floor. My nurse was nice and did check in on me from time to time and once even came in to perform orthostatic blood pressure readings because I had mentioned POTS to her. They never did reveal the results or what they indicated but at least someone had sense enough to collect that kind of data.

I had a slight temperature at 99 point something, but nothing alarming. I was just flushed and felt overheated without sweating. I hate that feeling. Finally someone brought me a cool rag. At one point, the male nurse from earlier walked by and closed the door for "privacy issues." My mom said I must have been showing too much leg for his liking. That's what happens to overheated patients when left unattended. In the state I was in I lost all ability to reason or care about nuisances such as modesty. I was simply trying to keep myself cool. And at this point I was agitated and so famished from lack of food that I was about ready to murder the next nurse who told me not to eat anything until the doctor gave approval. Low blood sugar makes me do and say crazy things. The doctor who had come in at the beginning to examine me for all of about two minutes asking if I had consumed any caffeine that day was leisurely sitting in front of her computer down the hall enjoying a diet coke and a snack. Lucky her. I know this because I walked my weak self down the hall to beg for food and drink. Lo and behold the nurses instructed me I had to wait until I heard from the doctor and that it would just be a few more minutes.

Finally a nurse walks in, not to tell me I could eat, but to collect a urine sample that they had forgotten to collect in the beginning. To top it all off I had just emptied my bladder when I had gotten up to beg for food and water a few minutes before. So she hooked up another IV and let it run for a few minutes until I was ready to produce a sample. Finally, the night was nearly over. In walks a nurse with a cup of ice water for me to drink! I had never been so thankful in all my life! Then, my regular nurse walks in with yet another cup of ice water and 2 big and bitter pills to swallow called Cipro. In comes the doctor for a brief appearance to inform me they had found a probable urinary tract infection so it was the law that I had to take these pills before leaving the hospital. So two nurses, a doctor, my mom and my ex-boyfriend had all arrived and were all hovering about me in this tiny room waiting for me to swallow these damn pills. Talk about pressure. I wasn't convinced I had a UTI in the first place as I wasn't experiencing any symptoms. But I reluctantly swallowed the pills, breaking them up with my teeth first, making the doctor and nurses wait as long as possible for me to finish since I had waited so long for their company.

At last everyone else went out in the hall while my primary nurse unhooked me from everything and asked me how long I had been suffering from anxiety. I said that no one had ever diagnosed me with anxiety before but admitted that hospitals and medical stuff did tend to make me feel very anxious. Of course anxiety wasn't listed anywhere on any of my discharge papers, simply "probable UTI, tachycardia, and weakness" (they neglected to even address the weird high blood pressure issue). Although she herself was not a doctor and did not have the legal authority to diagnose, she revealed quite an astute observation, saying that I clearly exhibited symptoms of anxiety and she understood why: "all you did was go to the dentist to get your teeth out and ended up with a permanent health problem. I get it, believe me. I understand why you'd be anxious around doctors and places like this. You just can't let it define you though. Life's too short." This nurse was right. Life is too short to let one awful life-changing event define you. I was so many other things in my life before POTS, there was so much more to me than being sick. I hate being the sick girl and don't want to be thought of that way. So going to strive to get the old me back one small step at a time. My first goal: stay the heck out of the ER for as long as possible!

Are 'Type-A' Personalities Most Prone to POTS?

I have an A-Positive blood type, a reformed Type-A personality, and now, a case of POTS. Sound familiar? I find it interesting that a lot of the literature on POTS indicates that many sufferers were typically overachieving, Type-A personalities driven to succeed. Isn't it ironic that some of the most ambitious and intelligent young people are struck with this debilitating illness that inhibits the ability to achieve certain goals--specifically the career-oriented ones? Sure, we can still be successful and productive individuals, but many of us perhaps not in the same profession we had planned.

As a former television producer and host, I oftentimes struggled to remember my lines during my "stand-ups" and my delivery would get worse and worse the longer I stood there in front of the camera. This phenomenon happened to me quite frequently before my diagnosis. My cameraman jokingly alleged that he thought I was coming down with Alzheimer's Disease, and I'll admit for a long time I actually wondered if he was right. I was not only embarrassed by my poor delivery of lines, I was also secretly scared that I may have quite literally been losing my mind. One day it was too cold to shoot my intro outdoors, so we opted to film it inside instead where I happened to be sitting down, and that time, I nailed my intro on the first take. After that shoot, he insisted on filming everything while I was sitting. Interestingly, this was still before I even knew I had POTS. Turns out my cameraman was actually on to something. He had absolutely no medical knowledge whatsoever and yet for him it was plain to see that I did not perform well standing up.

I now recognize that was all just a case of bad brain fog and inadequate bloodflow to the brain; something that I struggle with on a daily basis whenever I attempt standing tasks. And I of course modify my actions appropriately. I try to do all my important decision-making while sitting with my feet elevated or laying down. I also try to perform all cerebral work (reading, writing, paying bills) while lounging around in bed. That is definitely not how I would have set out to accomplish my most important tasks in the past, but it is my new reality. If a rude stranger like the one who left the note on my car were to see how I go about accomplishing my daily tasks they would surely accuse me of being lazy because that is how it must look as I lounge around with poor posture, my feet awkwardly sprawled all over furniture. But I have discovered that in order to be as productive as I can, I need to listen to my body and pretty much do what it tells me to or I will pay the price later. So I do my work from the couch or even from bed if I want to maintain some semblance of intelligence.

Why is it that many POTS victims had/have Type-A personalities? Does operating on overdrive for so long render our autonomic nervous systems more susceptible to malfunctioning? Or does living in a state of chronic stress simply weaken our bodily defenses, thus inviting potent viruses and leaving us vulnerable to irreparable traumas? In my case, prior to POTS I was a healthy, involved-in-everything individual who thrived on stress to accomplish my goals. I suffered from severe menstrual cramps one day each month and dealt with the occasional cold or ear infection, but most of the time I was able to easily power through a minor illness and continue my full life with minimal interruption. Senior year of college I developed infected wisdom teeth and after their removal my body was never the same. The severe car accident I endured three weeks later didn't help my body's recovery process either. So a virus, a surgery, and a trauma all may have contributed to my POTS. Perhaps my body was already enduring too much stress as a busy, driven college student and it simply couldn't handle all the physical trauma suddenly being thrown its way in less than one month's time. In a sense, my system couldn't cope. It felt like my body was thrown into shock and it signaled me of its distress with a racing heart, extreme insomnia and overwhelming fatigue. I will always resent my former primary care doctor who didn't bother to listen to me or my heart and immediately wrote me a prescription for Zoloft. Had I remained under her care I may not even be alive today. Too many doctors rely on a generic "anxiety" or "depression" diagnosis without bothering to thoroughly evaluate a patient's symptoms before dispensing pills.

This week, I am going to visit her office and leave an article for her, along with a polite handwritten note explaining that she may have been too quick to diagnose me with anxiety three years ago. I would also love to take her a copy of DINET's informative "Changes" documentary but unfortunately I doubt she would take the time to watch it. So I am going to include my favorite article on POTS instead. It provides a comprehensive overview of the syndrome without going into lengthy detail, so I am hoping she will take the time to at least glance through it.

http://www.ipej.org/0602/raj.htm

Update

A few weeks ago, I saw my electrophysiologist, the brave and patient man (in my book that makes him a hero) who has taken me on as his first real POTS patient. Although I get along well with this doctor, for some reason I typically end up in tears in his office. Every time he sees me he must be anticipating the waterworks since he always has a fresh Kleenex box in hand upon entering the room. Sure, there have been a few extreme tachycardic episodes which he witnessed with his own eyes, the simultaneous sense of disappointment and relief I experienced upon finally hearing a legitimate diagnosis, and even the grieving openly to him about the emotional aspects of being sick and the wonderfully active and ambitious life I left behind. Those discussions all engendered tears easily. But at this last visit (my first visit with him in over 9 months!) for the first time I did not cry. And I was proud of myself. He could tell I was making progress. It's not like he is my shrink or anything, nor is it his job to be, but he is sensitive to the fact that I am dealing with something difficult and chronic with no quick fix or simple cure. His empathy is refreshing considering most doctors I have encountered don't even recognize the terms POTS or dysautonomia.

I ran through a checklist of questions, among which were routine items like a compression stocking prescription, a refill on my propanolol (taken as needed), and an update on my blood pressure readings. The first and most important item at the top of my list was to talk to him about getting a handicapped parking sticker, something I have been vehemently resisting until just recently. My mom convinced me to at least ask about it to see if it was a viable possibility for me, and of course she encouraged me to get one. My electrophysiologist agreed with her wholeheartedly, filled out the paperwork, and I had my sticker that afternoon. I'll admit, it has made life a little easier.

Whenever I attempt to go to the grocery store or even run a simple errand, I am often exhausted before the time I ever get inside. I realize that my body is operating like an hourglass, the blood is slowly running downward and I only have a limited amount of time to complete errands before all the blood will have left my brain and I will collapse in public. So needless to say I make lists and plan my strategies for errands very carefully so I can complete them as quickly as possible to avoid a potentially embarrassing incident in public. Perhaps it is because I passed out at my own college graduation, what is supposed to be one of the most important and defining moments in any young person's life, but I have an extreme fear of passing out in public again although it has only happened to me that one time. I think my fear of publicly passing out is mainly because I know someone would call 911, I would be forced to endure yet another harrowing and uncomfortable ambulance ride, and end up getting needlessly poked and prodded in the ER only for them to tell me they have never heard of POTS and to be sure to follow up with my doctor. Aside from getting a saline IV which usually makes me feel a little better temporarily, there are few perks to an Emergency Room trip. Usually the amount of blood they take for the tests is enough to drain me (literally) and leave me feeling more weak and symptomatic than I was in the first place.

And why they never let anyone eat anything in the emergency room is beyond me. I know I will not be needing an immediate surgery, and I also know that my body doesn't last much longer than about two hours without food. It was always a bit difficult to sneak bites of fast food while laying there and I always felt slightly guilty when a doctor or nurse asked what the smell was. But I know that not eating while I waited for hours on end for a response as to whether I could eat or not would only result in me feeling much, much worse. So I'll admit it, I have eaten several cheeseburgers in emergency rooms while waiting on test results. Admitting that feels like I am confessing some unspeakable sin, but at the same time, I'm not sorry, because my body was probably telling me to eat the cheeseburgers for a reason. Sneaking those cheeseburgers was about the worst thing I have done in my life thus far. But feeling that sick and that starving, at the time I didn't care that I was breaking the rules, and truly felt as if I might die if I didn't eat at that very moment.

Luckily I have managed to stay clear of emergency rooms all year, and it feels good. After having a recent string of bad days down in bed, I realize I am not out of the woods with this whole POTS saga yet. But the good news is I am down in bed much less than I used to be, and am much better than I was in the beginning. Maybe it is because I have discovered what triggers my symptoms, and I do my best to avoid those things (standing, extreme heat, going for too long without food or water). Or maybe it is because my autonomic nervous system is slowly recovering and normalizing. I can only hope that my progress is due to the latter.

In the meantime, it is my new found attitude that I am going to do everything in my power to lead a more 'normal' life. If that means using a handicapped parking sticker to achieve a better quality of life, then that is what I am going to do. If I am feeling faint in public, I am going to sit or lay down on the floor. I don't care if it isn't socially acceptable. I refuse to be embarrassed about it. I refuse to let people's stares bother me anymore. My next step, although I am stubborn and hate to admit that that I need help and can't always stand on my own two feet, is to take a trip to the grocery store and use a handicapped cart so I can actually enjoy my shopping experience for the first time in a few years. I may attach a sign to the front of the cart that says, "I faint." I get tired of explaining POTS to people who simply don't get it.

I think I have been in denial about being different for a long time. It's like I don't want to admit to anyone, even myself, that my body cannot do the things it used to. My body harshly reminded me this past weekend when I used my handicapped parking sticker to go to a classic car show. Because I wanted to go, and I thought I could handle it. And I would have never known if I didn't at least try. Silly me, I now know that it was a bad idea to even attempt such a thing especially on a hot day without renting a wheelchair. What was I thinking? The stubborn side of me was thinking, I don't want to have to be pushed around in a wheelchair all day when I have legs. I don't want people staring at me. And, most importantly, I don't want to give in to this illness. If I start using a wheelchair, or becoming too reliant on my handicapped parking sticker, then POTS has won and gotten the best of me. And I don't ever want to let it win. At least not without a good fight. Then it hit me, that I am only making this whole experience harder on myself by not listening to my body. And if I don't listen to my body, and try to accommodate it at least a little bit, then POTS is winning anyway because I am allowing the symptoms to dictate what I can and can't do in life.

Not anymore though. Although it sounds cheesy, I am going to start embracing the fact that my body is fragile. I am going to treat it with even more respect than I already do. I am going to nourish it properly by eating a better diet with more whole foods. I am going to go for regular massages. I am going to find an exercise regime that works and adhere to it. I am going to try my hardest not to compare myself to my "normal" peers and what they are doing anymore. That only makes me feel inadequate and reminds me of all the things I am missing out on. I am going to adopt a new attitude of positivity and be thankful for the things I have accomplished in life and the wonderful friends I have gained through POTS who are all sharing in this difficult struggle.