Perfect Products for the POTS Patient!

Birthday and Christmas gifts have taken on a whole new meaning for me since getting sick. I am now all about the practical, the useful, the helpful. With the holiday season swiftly approaching, what better way to prepare for Black Friday bargains than to compile a list of products that make our lives easier. Here are a few of my favorite essentials, perfect presents for any potsy's wish list in every price range.

Stocking Stuffers:

Wrist Blood Pressure Cuff, $20-$40

Head Massager, $5-$10

Snack-Size Almond Containers, $2-$5

Epsom Salts, look for lavender scent for a spa-like experience, $2-$5

Satin Eye Mask, $5

Hot Water Bottle, $5-$10

Ice Packs, $5-$15

Battery-Operated Heated, Vibrating Slippers $20

Pedometer, $5-$15

Reusable Water Bottle, $5-$20

Splurges:

Bubbling Foot Spa, $20-$40

Travel Humidifier, $50

Polar Heart Rate Watch, $50-$200

Hydration Alert Monitor, $20-$80

Large Purse of Choice, $40-$500

Recumbent Exercise Bicycle $150-$450

Laptop of Choice, $350-$2500

Exercise: Friend or Foe?

If you asked me whether or not I would be exercising after I first got sick, the answer would have definitely been no. I could barely walk from room to room without getting weak and winded. Chronic tachycardia will have that effect on a person. I couldn't take the stairs on my college campus, instead I had to rely on elevators and even then it was a stretch just to get myself from class to class. This was all before my POTS diagnosis of course.

My EP kept urging me to join a gym and just start slowly on bikes and weights. For a long time, I ignored his advice. I then stumbled upon a blog about a research study in Texas on exercise and the POTS patient. I was intrigued. I immediately contacted the blogger and the research associates but never heard back, so I am unclear what Dr. Levine's specific exercise protocol is, but the blog mentions recumbent bicycling, swimming, rowing machines and weights. So, I did some research, and started exercising at a nearby rehab facility. Since Dr. Levine's specific protocol was not revealed online, the owner designed an exercise regime specific to my needs. He performed an EKG, blood pressure readings, and a test called the BioZ that measures cardiac output, stroke volume, and things of that nature. He said the always reassuring, "I've never seen anything quite like this before," in reference to my off-the-charts BioZ test results. He then performed the BioZ test again five minutes after exercise and my results were encouraging: everything had come back into a normal range. He concluded that I need to exercise in order to keep my circulation going. And I believe he is right. However, in the beginning, I couldn't tolerate any exercise. But now that I have gotten my condition somewhat under control through salt, fluids, and the occasional beta blocker, I am able to do certain exercises and movement really does make me feel better.

If I don't exercise for a couple days, I start to notice the effects on my body. When I am diligent about my exercise routine, I am much less lightheaded and suffer fewer woozy spells. I purchased a recumbent bike to use at home and ride anywhere between 5 and 10 miles every other day at a low to moderate resistance setting. If I ride it a bit each day, I tend to feel better. However I think it's important to take a day off the bike here and there to let my muscles recover. I try to do light weights with high reps 2 to 4 times a week for about twenty minutes at a time as well. I do some leg work, abs, back, and shoulders. I have definitely noticed an improvement in my muscle tone and I am a bit stronger overall. An occasional pilates workout provides a nice diversion from my standard routine and if I am experiencing worse than normal brainfog I turn to yoga, as it enhances bloodflow to the brain because of all the inversions. Lately I have not been devoting as much time to exercise as I should be, and I can feel it. My woozy spells are indeed motivation to get back to the gym.

As with any exercise regime, please consult your doctor before beginning. Exercise can be a positive experience that improves circulation, muscle tone, and creates natural mood-boosting endorphins. Take it slow, if exercise causes you any abnormal or unbearable pain or discomfort, stop and revise your regime. Don't feel pressure to exercise for hours per day. Sometimes just minutes will do the trick; some exercise is always better than none at all. My best advice is to start all exercise in the recumbent position, doing leg lifts on the ground or from bed if that is all you can tolerate. Don't push yourself too hard. Monitor your heart rate and blood pressure throughout, at least in the beginning. Your stamina should increase over time. Be patient with your body, and most importantly, listen to it. Do not exercise to the point of exhaustion. Start with brief bursts of exercise and wait and see how your body responds the next day. Over time you may experience a noticeable improvement in your symptoms as I have. Exercise has quickly become one of my best friends.

The Shrink: To See or Not to See?

We all know that dysautonomia is a very real medical condition that causes debilitating physical symptoms. The numbers don't lie. A resting heart rate of over 120 beats per minute is rarely ever induced by anxiety, but rather a sign that something has most certainly gone awry in the body. Any reasonable doctor knows that.

It was beyond frustrating over three years ago when my old PCP, an airbrush-tanned and airheadish woman who didn't even attempt to listen to my heart with a stethoscope, wrote me a prescription for Zoloft, told me almost all young women my age suffer from severe stress and anxiety, and sent me on my way. It was even more frustrating when the Zoloft aggravated my cardiac symptoms and made sleep even more impossible to achieve for the week that I took it. After informing her that I would not be taking the Zoloft because I did not think I needed it, she finally humored me and listened to my heart with a stethoscope, and then sent me promptly to a cardiologist. At least she had sense enough to do that or I may have very well died under her care. Unfortunately, the aforementioned situation is all too familiar for POTS patients. We have all had to actively convince doctors that there is something real wrong with us. Thankfully I didn't have to wait too long to find a doctor who took my symptoms seriously. Nonetheless, before the official diagnosis, and even now, I still have selected family members telling me I need to get some "coping skills." Of course that angers me greatly on the inside considering I don't talk about my condition much at all with family because I don't want to be perceived as a complainer. So for the most part, I keep my struggles, thoughts and fears to myself and am guarded around certain relatives in particular. This blog has become my outlet for open sharing. And so has the online POTS community. I have met so many amazing and kind people afflicted with this strange and awful illness, and they have been my biggest and greatest support system. Pretty much the only way I know how to cope is to share with people who care.

On that note, I considered sharing my story with a total stranger (aka a shrink) for therapeutic purposes. As a communication major in college, one thing I learned about myself is that I scored quite high on the self-disclosiveness scale. I typically don't mind telling total strangers my life story. Getting sick at a young age has made me even more open in many ways. Being proper, guarded and reserved requires entirely too much effort on most days, so I am usually an open book. It's just easier that way. For some reason though, I still hesitated to visit a psychologist. Primarily because I didn't need another person just to listen to me ramble, quite frankly, I needed someone who would be willing to dispense advice and provide me with some tangible ways in which to cope with chronic illness.

I conducted some careful research and found a psychologist who I believe is my perfect match. She is not just an ordinary psychologist. She specializes in people dealing with chronic illness. Although she had never heard of POTS, she asked me all about it, had looked it up by our second appointment, and understood that it has many similar symptoms to those of Chronic Fatigue Syndrome. She sees chronic fatigue and epilepsy patients most commonly. I was relieved to hear that she had seen patients with neurological conditions before. Her demeanor is very friendly and non-judgmental. She listens well. Her office is comfortable and inviting and she doesn't mind if I lay flat on the floor during our sessions if need be. Most importantly, she also recommends practical coping tactics. I will relay a recent difficult event or setback to her, and she will respond with ways in which I could choose to feel about it, or how to reframe certain negative situations into positives. For me, this is a helpful tactic, since POTS has seemingly put a damper on my once optimistic personality. She also reminds me about practicing "pacing" (basically her version of The Spoon Theory) and not feeling guilty about it. Pacing is something that I am hoping we will focus more on in future sessions. She seems to have some practical techniques when it comes to things like scheduling events or telling people "no" in tactful ways. These are the concepts I have needed to refine for a long time. I look forward to continuing my sessions and hope to gain the coping skills and life skills I need in order to live happily and productively with POTS.

So, my honest opinion is, anyone considering seeing a shrink should definitely do so. Worst case scenario, you have wasted an hour of time and will never return. Best case, you will find someone who understands your predicament and can provide objective and honest advice on how to cope with whatever life throws your way. If nothing else, the experience should provide you with some validation that you're not actually certifiably crazy. According to my psychologist, the emotions I'm experiencing are a normal and healthy response to dealing with chronic illness and she does not think I need psychiatric medication of any kind. It is refreshing and comforting to know that at least there's someone out there who recognizes that this condition is not all in our heads, as so many of us have been told repeatedly. Ignore the stereotypes associated with seeing a psychologist or psychiatrist. It does not imply insanity. All it means is that battling a chronic illness will even make the sanest individuals a little crazy. Sometimes we all need a little help in that department.

The Quest for the Perfect Compression Stockings!

I have been wearing compression stockings religiously for the past year and I can't live without them. My grandma gave me my first pair that she had ordered online and that pair has been absolutely wonderful. They are knee-high, toeless, beige and unattractive. But they do the trick like no others I have tried. The problem is, she didn't remember what kind they were, and I stupidly threw away the box they came in without thinking twice about it. So for the last year I have been faithfully washing and wearing the same pair nearly everyday as I have searched, purchased, and tried about twenty different pairs, and every time I have been disappointed with the results. I have tried everything from Jobst, (which is supposed to be the best) to the no-name pairs online and failed to find any like the pair from my grandma. Luckily, the last time I saw her, she let me look at her stash that she still had in boxes - and bingo! I found a pair with the identical weight, texture and feel of the ones I have been wearing! They are called Jobst Relief compression stockings. There is a HUGE difference between the Jobst Relief line and the rest of their stockings. Although their other stockings might be slightly more attractive, the Relief ones work the best for combating lightheadedness and cold feet. I typically wear them under jeans or pants anyway so it's no big deal. They are available in black or beige, toeless or regular, knee high, thigh high and waist high. They are a bit pricey like all compression stockings are, but if your insurance covers them, then stock up. If not, I would still highly recommend investing in at least one pair. They don't just minimize lightheadedness and fainting, they also help with leg pain, fatigue, and circulation.

Yesterday my neighbor appeared at my doorstep visibly frightened and ill. She is a nice lady living with diabetes and bad neuropathy in her feet and was too weak and ill to go pick up her medications. After delivering her pills, I asked her if she had ever tried compression stockings. She hadn't but said that she had been thinking about trying them. I realize I am not a doctor but I recognized this woman's desperation and fear. She was visibly ill and looked like she was about to pass out. And I had to wonder if the lightheadedness she experienced that afternoon was a blood sugar issue or a case of orthostatic intolerance. Either way, I figured I should give her a pair of compression stockings to try. I ran home to get them and she has not taken them off since I gave them to her. Today she reported that last night was the first night in months that she had not experienced any foot or leg pain. She is now going to talk to her doctor about a prescription for them since they provided such immediate relief. It is amazing how often an old-fashioned remedy can be so much more effective than a pill.

My First Time Driving a Motorized Shopping Cart

I am a bit of a stubborn person by nature. It took me a long time to admit that yes, at times I definitely need that handicapped parking sticker. And now that I have been using it, it has made life a little easier. The other night I was feeling very lightheaded and weak but decided to go on with my usual routine. Well, the only place that got me was sitting on the floor in the middle of a Lowes home improvement store.

Several of my friends have suggested that I use a motorized shopping cart on a bad day or when I'm in a large store. So, I finally gave in and tried one. And go figure, the first time out, I got a dud. It was not a smooth ride. Although I'm sure it only traveled all of about 5 miles per hour at most, it was very touchy and took me awhile to get the hang of driving it. Don't let my experience discourage you though, I'm sure they couldn't all be this difficult to navigate. The cart was stop, go, stop, go, stop, go and didn't turn very well. But aside from the technical issues, I had a much more pleasant shopping experience than usual. I was able to last much longer and didn't have a woozy spell once.

After the parking sticker incident, I was apprehensive about the way people would perceive me or the looks I would get for operating a motorized cart. But surprisingly, the shoppers and staff of Fred Meyer I met in the aisles were surprisingly friendly. I got a few looks, but not dirty ones. Nobody asked me why I was using a motorized cart, and nobody seemed to care. All in all it was a much better experience than I anticipated. There were only a few major drawbacks to using a motorized cart. The first was, I could not fit many items in the basket. So if I had a lot of heavy shopping to do, I would probably need someone else to come along and push a regular cart if I could not do it myself. The second thing is, if I were not physically able to stand that day, there are many items that I wouldn't have been able to reach from the cart. The last thing is, some of the aisles were a bit too narrow for the cart to clear so I found myself taking alternate routes a lot, which was a bit annoying.

If you have been contemplating trying a motorized shopping cart, I would highly recommend it. If you are still uncomfortable with the idea, try it in a store you don't ordinarily shop in. There is nothing to be ashamed of, but I understand that it can be exhausting to explain your predicament to people you see on a regular basis. Automatically people tend to assume that you've been injured because they just saw you walk in the store last week. If only dysautonomia were as simple as an injury that would heal, life would be much, much easier.

Combating Cold Feet

For some reason, possibly from years of torturing my feet in ballet, or possibly just another pesky symptom of dysautonomia, I suffer from icy cold, numb feet. A local neurologist I saw deemed it neuropathy, but he did not know why I had it. This is the same neurologist who told me that "autonomic dysfunction is so rare, you couldn't possibly have it." Needless to say I broke up with this neurologist and now my EP recommended I see someone else instead. One of the issues I am hoping a neurologist will adequately address is my feet. They are duds. They feel heavy and numb when I'm walking around and are nearly always cold and bluish even at times when they shouldn't be (after exercise, bundled in wool socks and Uggs, etc). It is bad enough that I have to wear compression stockings everyday, but now I am practically living in my Uggs too. This illness can really hinder a girl's sense of style. I miss my old clothes and dressing up, which only happens on rare occasions nowadays. As far as I know, there is no magic pill to cure cold feet. So I have developed a few drug-free remedies of my own that work for me at home. So if you suffer from cold feet too, listen up my friends.

The first is to purchase an old-fashioned hot water bottle from your local drugstore. They are about five dollars and last forever. I would recommend airing it out outside for a couple of days before the first use if you are sensitive to scents since the smell of a brand-new hot water bottle is akin to the inside of a tire shop. Fill it with the hottest water as you can get out of your tap. Then place it at the foot of your bed either on top of or beneath your feet. I sleep with mine nearly every night and it usually stays warm until the next morning, especially if you put a blanket on top of it. Many people also use electric heating pads and blankets, which also work fine, but I am not a fan because of the electrical currents running through them. According to my EP, electric blankets can actually alter your heart rhythm, so I don't use them anymore.

The second option, my personal favorite, is the foot massage. Of course the foot massage experience is more enjoyable if someone else does it for you, but if there's no one else around, DIY. You will get the same benefits of enhanced blood flow to the area and experience temporarily warmer feet.

My third recommendation is to soak your feet in warm water either with your favorite bubble bath or my personal favorite, epsom salts, which provide some pain relief and actually help facilitate sleep. Epsom salts are affordable, unscented, and are full of magnesium which is good for muscles and nerves.

My last suggestion is to wear wool socks and heavily insulated shoes, boots, or slippers like Uggs. This is the best option if you are out and about or travelling.

So that about covers combating cold feet in the literal sense, but lately I have been suffering from metaphoric cold feet as well. I am apprehensive about possibly re-entering the workforce, wondering if my body will hold up for eight hours a day, or even a couple hours a day. Of course my job search has been limited to desk jobs because standing is out of the question. No waitressing or cashiering jobs for me, which unfortunately seems to be about all that is available in my area. The other issue is, I need to find a job that is within a five minute radius (maximum) of my house. Kind of hard to do when I'm in a largely residential area and the major industry here is retail, which revolves around being able to stand for long periods and lift things. Not to mention, I am qualified for and capable of something different. I hold three bachelors degrees and have five years of work experience in my field. But because I am not able to drive much anymore, most of the jobs I once dreamed of pursuing are out of the question. I am so glad that I graduated on time and with honors, but really, my education hasn't made much difference in my life yet because POTS came along and ruined my shot at becoming a productive member of the workforce.

If I could travel back in time and do it all over again, I would have traveled the world and taken more risks while I was still healthy. Instead I spent my time studying, working, volunteering, and living up to other people's expectations of me. I never really stopped to consider what I wanted. I was so determined to be valedictorian and go to a prestigious university that I sacrificed a lot of fun along the way. That is why, on my good days now, the last thing I want to do is waste the day applying for low-paying jobs I am overqualified for. Instead I try to spend my time enjoying the good days, having whatever little fun I am able to. Life's too short to do anything else.

The big question for many of us is, how will we be able to support ourselves in the future if we are unable to work? This is something that troubles me greatly. I have always been a good money manager, but in order to manage it successfully, there has to be something coming in. Right now I am pursuing non-traditional avenues of income such as work-from-home positions and my own resume-writing business. I believe in order to meet my financial goals in life without working a conventional full-time job, I will have to secure multiple sources of income. I have not yet pursued disability benefits because I am not sure if I have worked enough years to qualify, and I am stubborn, and would really like to at least try working again before I finally resign myself to the fact that maybe I can't work. But who knows, with any luck my body will start cooperating and I will be able to work again. I miss working. A lot. I miss the feeling of accomplishing something big each day. Now the little feats are victories to me: a trip to the grocery store, a decent night's sleep, or a day with little pain. This is my new normal. And I am trying hard to redefine my own personal meaning of success. It is so hard not to compare myself to others who work full-time jobs and contribute positively to society, because that used to be me. I really hope that an employer will give me a chance soon, a chance to at least try working again and see how my body reacts and adapts. The prospect of working again gives me cold feet for sure. But the prospect of never working again gives me even colder feet. Any suggestions on how to squelch these negative, nervous feelings of mine would be greatly appreciated...

Making the Most of Massage

Ever since I was a little girl I have loved and lived off of foot massages. Back then, I had an excuse. I was on my feet all the time because of ballet, which wreaked havoc on my toes and ankles. But now, I am up on my feet much much less as a result of POTS, however my feet and legs need massage now more than ever.

Massage is a form of passive exercise that stimulates circulation and nerve endings. It is also relaxing and can be therapeutic after an injury. I tried massage therapy on my upper body after my car accident. I had a few decent experiences and a few awful ones that left me in agonizing pain days after the massage. My body did not like deep tissue massage at the time. Everything was too sensitive after the accident. For me, it was all about finding the right massage therapist. I have tried five different massage therapists over the last couple years and have finally found the right one. She focuses on my feet and legs but will work on my neck, shoulders, arms and back if they are sore. At first she focused too much on my upper body while I was laying there with uncomfortably icy feet. Then it occurred to me: this is my massage, I am in control. So I spoke up for myself and explained that I had poor circulation in my feet so could she please spend more time concentrating on my legs and feet. And she was happy to comply. Amazingly, my feet usually stay warm the rest of the day following a massage. I only wish the noticeably warmer feet lasted longer than one day. Or better yet, I wish I could have a professional foot massage everyday!

The best thing about massage is, you don't necessarily have to have a trained and licensed massage therapist at your feet to reap the positive benefits of massage, which may include:

• pain relief
• improved sleep
• reduced heart rate
• improved circulation
• reduced anxiety

In fact, most people can easily massage their own feet to improve circulation and reduce anxiety. I am making self-foot massage a mandatory part of my daily routine, just like brushing my teeth or hair. I encourage whoever is reading this to try it too!

Irony and Balance

In reference to my last entry on Type-A personalities being prone to POTS, isn't it ironic how people who once prided themselves on being in control can't even control their own bodies as a result of dysautonomia? How intellectually astute individuals develop an illness that causes brain fog and thus inhibits their ability to think clearly? How former dancers lose the feeling in their feet due to neuropathy? I am one of those people who have lost the things I once defined myself by. All these things ripped out from underneath me leave me feeling completely vulnerable and a little bit lost in life. Although I try my best not to, I find myself clinging to the past when I achieved things almost effortlessly. Now, each day can feel like an uphill struggle. In the words of my wise EP, "EVERYTHING is way out of whack." Well that's for sure. My body is incapable of functioning in the same capacity it was before and I just have to get used to it. It is a strange sensation to not feel my own feet, but I suppose something I will just have to live with. I used to be a perfectionist, so it is hard to accept not feeling my feet or the fact that there may not be a remedy for the problem. All these strange maladies caused by POTS leave me wondering: what's next? Dry eyes, numb feet, dizzy spells, tummy aches, sleepless nights--what's next?

Isn't it ironic how the things a person loves and uses to validate and define oneself can be snatched away in a heartbeat...I am immediately reminded of the Alanis hit from the '90's.

I suppose it's time to find a new niche for myself, one which accommodates these strange and incapacitating ailments...it is difficult to thrive in society when it is hard some days to even leave the house. The unpredictability of symptoms is perhaps the most frustrating aspect of dealing with chronic illness. I am tired of not being able to make plans with people, or plans to do anything for that matter because I don't want to be perceived as unreliable, flaky, or incompetent. Needless to say I am a bit worried that I won't be able to cut the mustard at a new job when I can barely remain conscious for a 45 minute job interview. My resume, cover letter and applications are immaculate and usually sufficient enough to land decent interviews, but after the interviews I am sure the employers wonder why I was so fidgety and couldn't sit still for long. Of course they are not aware of what's going on inside my body. And sometimes I wonder if maybe I am doing myself and a potential employer an injustice by even trying to work again when my symptoms can strike at anytime. I figure, I will never know if I can handle it unless I give it one more shot. I know I have some valuable skills to offer someone out there, but the conventional 9 to 5, be-on-time-and-ready-to-work thing doesn't sound too feasible for me at this point in time.

In the meantime, I will continue to ride my recumbent bike, strengthen my legs and arms on weights, do some pilates, get in the best shape possible, and hope that someday soon my body will regain the strength, stability and stamina to be a productive and successful employee somewhere. My life lacks any sense of real balance right now. I spend a disproportionate amount of time at appointments that just leave me exhausted and full of more unanswered questions. I am striving to achieve some tangible balance in my life right now. I am making it a goal to accomplish at least one significant task each day, even on the bad days, and even if it takes me all day to do so. In my downtime I will be continuing to work on my personal fitness, nutrition, and of course, sleep.

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

Dealing with Dysautonomia at the Dentist

As I sit here dreading my upcoming dentist appointment tomorrow afternoon, I wanted to remind myself of a few important strategies I can use to cope in the dental chair. Luckily, I have a very gentle and compassionate dentist (with very small hands) who lets me rest my jaw when needed. She also maintains a very clean and comfortable office atmosphere with televisions on the ceiling, headphones, and sunglasses: all things which serve to make the patient comfortable and ease potential anxiety. Most importantly, she knows I have a severe epinephrine sensitivity and gives me a special pain injection without epinephrine. She is also willing to work around my TMJ issues by giving me regular breaks to rest my jaw.

As I child I guess you could say I developed a severe phobia of dentists. I absolutely detested my childhood dentist and began to associate every dental appointment with pain and anxiety. Now that I'm a rational adult, things are a bit better. I know that my dentist is not out to get me and that regular treatment can help prevent pain and complications in the future. Going to the dentist the last couple years has become a lot more complicated though, partially due to my TMJ, and partially due to my case of POTS. Here are a few important things that have helped me get through recent dental appointments:

-No epinephrine! Epinephrine is an additive commonly found in pain injections like Novocaine. It can induce tachycardia in normal individuals. It actually makes me involuntarily shake and develop hives (an allergic reaction). Even if you are not allergic, ask your dentist for an epinephrine-free pain injection. They are just as effective without the potential side effects. Also, be aware of any other potential allergies and sensitivities including latex, and if you have any kind of allergy, inform your dentist or hygienist prior to treatment.

-Hydrate yourself long before your appointment (Gatorade is a great option). Bring a water bottle inside with you but be sure to ask when it is okay to take a drink.

-Eat a protein-rich snack right before the appointment. Bring something soft to eat afterwards like a pudding cup in case you get low blood sugar issues.

-Speak up for yourself. If you're uncomfortable or in unbearable pain, don't be afraid to tell your dentist. They want to keep the patient as comfortable and relaxed as possible. I opt to remain calm without the use of meds or laughing gas because of the side effects. Something as simple as listening to music or having a comfy blanket may be just enough to make your appointment more bearable.

-Close your eyes. Don't look at the giant needles as they enter your mouth. Keeping your eyes closed also helps keep that pesky bright light out of your eyes. If you want to keep them open, be sure to wear full-coverage sunglasses.

-Ask your dentist to explain the steps of the procedure to you as they go. Most good dentists will do this naturally. They will talk you through the procedure and alert you when you may feel extra pain or pressure so it doesn't come as a surprise.

-Ask your dentist if you should take any special care or precautions after the procedure. Sometimes patients will be advised to take ibuprofen or Tylenol for a day or two to minimize pain and discomfort. Others, especially those with heart conditions like MVP, will often be prescribed antibiotics to take as a precaution to avoid infection. Sometimes an ice pack or muscle relaxant will even be prescribed, especially for patients with TMJ or related conditions.

-Several shorter appointments are always easier for your body to handle than one or two long appointments. Pay careful attention to your scheduling needs. It is best for POTS patients to avoid early morning appointments at all costs, late afternoon or early evening is usually best. If there is one secret I have learned about dental offices it's that the late afternoon appointments are only going to last a couple hours at most because the offices always close down at a set time each day. Find out when the office closes and schedule your appointment two to three hours before closing time.

That is about it for my extensive knowledge of the dental world. Tomorrow I am going to try something new and ask my dentist if she will lay my head a little further back and keep my legs elevated a little higher in the air in an attempt to avoid woozy spells. My guess is that should help minimize my POTS symptoms a little more. Wish me luck!

I gleaned some more helpful information from an article on POTS and dental treatment which I will be printing out to share with my dentist:

http://www.dynakids.org/Documents/Brooks_April_2006_JADA.pdf.