Dr. Levine's Exercise Protocol for POTS: The Beginning

Considering it's a new year, what better time to embark on my 3-month exercise journey? Truth be told, I would have loved to have started this protocol about 6 months ago but it was difficult to get a hold of Levine's associates in Texas about the study and by the time I finally got the info from them I was sick again. Now that my awful sinus/ear infection and stomach issues are better, I have started Levine's protocol. So far, so good although I will say 50 consecutive minutes on a recumbent bike with a high heart rate is anything but easy.

Last night I rode just over 18 miles at an average speed of 21 miles per hour, averaged a heart rate of 136 with a peak heart rate of 149, and burnt a total of (only!) 323 calories according to my bike. It seems to me after 18 miles I probably burnt way more calories than that! I have the bike set up in the living room although I find it tough to focus on television while I'm riding. In fact, during intense exercise like that I find it's actually much easier to just shut my eyes as they tend to get really dry when I exercise. Anyone else experience that/know what causes it?

So I strapped on my heart rate monitor and ipod, closed my eyes and went to work. In 50 minutes I managed to listen to a new favorite of mine, Anna Nalick's 'Broken Doll & Odds & Ends.' I am going to use music to motivate me and listen to a different artist each exercise session as 50 minutes is usually long enough to listen to a complete album in its entirety.

Today I am supposed to be doing weight training according to the schedule that Levine's folks created for me. I suppose I should do that soon although I am still tired from yesterday and my knees are a bit sore. I cannot reveal any specifics of the program, but I believe each workout plan is tailored to your individual heart rate so my regime may look different from the next person's anyway.

If you have any interest in trying the program, I would recommend contact Dr. Levine's associates as soon as possible as it may take months before you are accepted into the study to begin. If you test positive for POTS according to a simple 10-minute stand test (much easier than a tilt-table test!) performed and recorded by your doctor in the office, you will most likely be accepted into the study and receive your own customized workout regime and schedule based on your resting and standing heart rates.

I still have a few questions I need to run by Levine's people. For instance, does it matter if I wear compression stockings while exercising? What if I can't get my heart rate up high enough into the zones that I'm supposed to be working in? So far it has been a real challenge for me to even get my heart rate up into the 140's while exercising (I can achieve that hr standing still, no problem, but riding the bike is much harder).

I am going to go do my exercises now before it gets any closer to bedtime. Please let me know if you have any suggestions for music! I will listen to just about anything and enjoy listening to stuff I've never heard before. Going to try to make this exercise journey as painless, fun and interesting as possible. The possibility of feeling better is motivation enough I just think music will help the time go much faster.

For your listening enjoyment, here is one of my favorite Anna Nalick songs, 'Shine.' One of my favorite lyrics is, 'Isn't it time you got over how fragile you are?' It definitely resonated with me for obvious reasons. I'm fragile, but it's up to me to make myself stronger.



I am also interested to hear if anyone has tried Levine's protocol or a different exercise regime and hear about your results, how you felt, what to expect, etc. Wish me luck! I intend to post regular updates about my exercise experiences and progress.

Gift Ideas for POTS/EDS Patients

'Tis the season for consumerism. I don't know about you, but I appreciate useful gifts that help improve my quality of life. Here are a few products I recommend without reservation, either for yourself or someone else who suffers from POTS and/or EDS.

Splurges:

1) Apple MacBook Pro. Powerful enough to do just about anything, with a large, clear screen for entertainment. Portable enough to take to bed with you. The only computer you'll ever need. Mine ran efficiently for nearly 8 years after withstanding four years of overuse and abuse at university. At $2400, it's an investment, but one that is sure not to disappoint.

2) KitchenAid Stand Mixer. The gold standard in baking equipment. Save your energy (and your joints) while baking with this lovely, durable mixer. Another investment for the long haul at $250 but I promise you'll get your money's worth out of it.

3) Ugg boots. Yes some may argue that Uggs are ugly. In fact I used to think so myself. But that was before I owned a pair! I have had mine for 6 years now and they are without a doubt the comfiest, warmest footwear I own. My feet are chronically cold, but not in my uggs. And they have really gotten a tad more stylish over the years as well. Price varies.

4) Recumbent Stationary Bicycle. Although I am not thrilled with the brand I purchased, my neighbor has a pricier model in a different brand, XTerra which I love. It is much sturdier with a much smoother ride, the Rolls Royce of recumbent bikes. She purchased it at Costco for just under $800. The convenience of having one at home means I am more apt to ride it and can't use the 'I don't feel like going to the gym' excuse.

5) A Tempurpedic Mattress. Perhaps the single best investment a POTS/EDS patient can make to improve their quality of life. Do not purchase a new mattress impulsively though. Make sure you take the time to do your research and test different models out before committing to one. A comfy mattress can make a world of difference in alleviating aches and pains and helping you achieve more restful, restorative sleep. Something we could all use a bit more of! Price varies.

Steals:

1) Hot Water Bottle $10

2) Homedics Mini Massager $10

3) Omni Mini Massage Roller $10

4) Omron Heart Rate Monitor $35

5) Plantronics Cordless Phone Headset $10

Updates and Downtime

I feel like it has been quite awhile since I have actually written an update on my life. I haven't had a whole lot of downtime lately, but finally had some tonight so thought I'd better take this opportunity to share. Many big changes have happened in the past month. First off, I am currently in the process of applying for disability. It is a lengthy, confusing process fraught with many forms, but luckily I have a good lawyer and a great paralegal in my court to help answer all my questions. Thankfully they are understanding and work with me over the phone so I don't have to worry about making it to any appointments in person, which is a huge relief.

During my last visit to the EP, he brought up the whole disability thing, saying that it would be a good idea to apply soon, kindly reminding me that it didn't mean I would have to be on it forever. Apparently it's much much easier to go off of disability than to get on it of course. So I gave in. Signed up with a lawyer. Paperwork is in. Now the waiting begins. Apparently it can take anywhere from 9 months to 2 years total to get a hearing before a judge. Had I have known that I would be sick for four years, I would have applied the day I got sick. But my optimism prevailed as I struggled to work, got laid off and sought stable work-from-home employment (the chupacabra of the job market it seems).

That said, I am proud to report that my job-seeking diligence has finally paid off and I am gainfully employed by a nonprofit organization working from home part-time. So far so good. I am their sole employee, the hours are flexible and my boss has been wonderful, providing me with plenty of guidance and input, which is rare to find nowadays, especially in a telecommute position. The only real downside? The pay is not great and not enough to support myself on. It is grant-funded and will last for a year. The good part is, it's okay with my lawyer that I'm working because I'm working such a limited number of hours exclusively from home and I'm not making over the allowed amount to still be considered disabled. Even if I am granted disability, I hope to still work part-time doing something meaningful whenever I am able. It renews a sense of purpose and accomplishment within me that has been missing for a long time. And working 15 hours per week makes the time fly by as I typically work a little bit each day.

Health-wise things have been a little better lately, knock on wood. After my extreme high blood pressure episode this summer, I'm not sure if I should be happy or unhappy to report that my blood pressure now hovers around the 90's over 60's most days. If I am up and about it sometimes gets to the low 100's. At night in bed it is 80's over 50's sometimes. Believe it or not I have never paid much attention to my blood pressure before and neither has my EP. Until the high blood pressure scare this summer, the only thing I ever noticed or paid any attention to was my high heart rate. I can't even remember what my blood pressure was like before the extreme highs this summer and the mild lows now. Mornings are still very rough for me and I am very sluggish so I try to do most of my work in the afternoons or evenings whenever I have the energy.

I am consuming copious amounts of salt again and plenty of fluids of course. Sometimes I eat so many chips even I get tired of them. However for those of you who need some tasty new chips to try, I am currently loving Trader Joe's Hawaiian Style Hickory Barbecue Potato Chips. Crunchy chips, although satisfying and great for my salt intake, not so great for my TMJ, which has been a royal pain again lately. I am supposed to take flexeril (a muscle relaxant) for it every night before bed, but haven't taken any in at least a month because it lowers blood pressure and I don't need that unwanted side effect at the moment. I would really like to try botox for my TMJ so they can inject the specific problematic muscles that keep spasming and I won't have to rely on Tylenol and muscle relaxers for relief. Botox injections are supposed to provide relief from headaches for 2-3 months after the injection. I can't even imagine what I would do with myself if I had 2-3 months without TMJ headaches! It would be amazing! Sure I'd still have the whole POTS thing to deal with, but I feel like I would be able to devote more time/energy to exercise if I didn't get awakened every morning with intense pain.

This TMJ thing is really cutting into my sleep. And without sleep I am essentially useless. My POTS symptoms (namely wooziness/lightheadedness) are WAY worse on 4 hours of sleep a night than they are on the rare occasion I get a full 7 or 8. After the nights I have actually slept enough, my POTS symptoms are much, much more manageable. I know I definitely haven't been getting enough sleep lately because I can barely keep my eyes open watching my favorite shows with friends. I always used to be the energetic one, never the one who couldn't stay awake during a movie or a half-hour sitcom for that matter. Luckily they are understanding but I still feel rude when a friend goes out of their way to come visit me and I am nodding off mid-sentence. Is this "normal" for dysautonomia? I am wondering if it's somehow related to my lower blood pressure readings. I also can't help but wonder if this is how narcoleptics feel when falling asleep at inappropriate times. I try to yawn, eat, or keep myself moving so I won't fall asleep on my company, but it's all to no avail. I worry that friends will stop coming to visit me altogether if I fall asleep on them every time because they will assume I'm not up for company anymore.

However, I am hoping to be functioning more normally in the near future again because I will finally be embarking on an exercise research study. At last the folks in Texas faxed the paperwork to my doctor's office to enroll in Dr. Levine's Exercise Research Protocol for POTS. I am super-excited. It has been about 3 months since I first contacted them and have been anxiously awaiting their info. My next appointment with my EP is on October 13 and I hope to get started shortly thereafter once they check and record my current numbers. I ordered what looks like a simple heart rate monitor on Amazon (have yet to try it) that arrived yesterday and am ready to rock and roll on my recumbent bike. All I have left to do is create some upbeat playlists that will hopefully keep me motivated during workouts. Let me know if you have any song suggestions, I'd love to hear them!

Perfect Exercise Equipment for POTS

Although the Luxury Hypoxi L250 is touted as a cellulite-burning machine, something tells me it would also be the perfect piece of exercise equipment for a potsy to own. Especially if you're not able to tolerate exercise in an upright position it would serve to help stimulate circulation immensely. Of course, one could simply employ the old-fashioned method of lying on your back and riding an invisible bicycle in the air and probably achieve similar circulation-boosting benefits, but this piece of exercise equipment looks much cooler and actually, downright comfy. Even if I can't afford one, I wish my gym would at least get one of these.

http://www.thehypoxistudio.com/L250.htm