Dr. Levine's POTS Exercise Protocol

After waiting several months for the paperwork to be sorted out, this month I started an exercise program designed specifically for POTS patients by Dr. Benjamin Levine from Texas.  Dr. Levine is a cardiologist who counts NASA astronauts and POTSies amongst his patients.


There is a confidentiality agreement you gave to sign before they send you the details of the exercise program, so I can't give out specifics, but for the most part, it's just intense cardio workouts meant to push the limits of your system.  Anyone with POTS who has tried to work out might be saying, "yeah right, I can't exercise without passing out."  The real difference is that  Dr. Levine's program has you doing cardio and weights in a reclined position.  Well before I received the Levine exercise program, I had read that recumbent (laying down) bicycling, rowing machines and swimming were great for POTS patients.  All of these exercises all you to work out without triggering the severe tachycardia you get from standing up.  In fact, I can even stand upright in the pool and not get too tachy, because the pressure of the water on my feet and legs in strong enough to prevent the pooling of blood in my legs.


The first day I did Levine's program, I though I was going to suffocate or pass out.  I couldn't get my heart rate up to the designated zone, so I just did what I could.  After about a week, I was able to get my heart rate higher.  Since I didn't get to the target zone the first week, I decided to repeat the first week.  In my second week, and was getting my heart rate higher while rowing and recumbent biking, and my shortness of breath was not as bad, although it's still the limiting factor in my workouts.


Some people join a gym to do Levine's program, but I decided to buy my own recumbent bike and rowing machine in one, so I could work out at home whenever I was feeling up to it. I bought a Stamina 15-9002 EMR Conversion II for about $550, including tax and shipping to my house.  There is another model, the 15-9003, that is about $200 more, but it doesn't seem to have any additional features from what I read; it's just the newer model.  I had to assemble it myself, which took about an hour with my husband's help.  It's quite large.  I have it plopped in my living room so I can see the TV while I'm on it.  It folds up a little bit, so I can hide it in a closet when company comes over.  


It tracks the distance rowed/biked, the length of time you've been rowing/biking, calories burned, speed, and when biking it can track your pulse (although it isn't that accurate because I have checked it against my pulse oxymeter and my heart monitor - the bike shows a much slower pulse).  As a bonus, I don't have to bee creeped out by the sweaty germs other people leave on the workout machines at the gym, I don't have to pay a gym membership, and my husband is using the machine to workout too.


I also purchased a Polar FS2C heart rate monitor for about $100.  It has two parts, a band you wear around your chest that has electrodes that read your pulse and a watch that displays the pulse and time since you started working out.  You can set target heart zones on the watch so an alarm will go off it you get above your target zone.  I find this helpful because with POTS, you can really ruin yourself for a few days if you over do it and get above your target zone.


I already had some light weights, 2 lbs. and 5 lbs.  I use those every other day and alternate with the cardio workouts.  I try to do at least one day a week in the pool.  I do resistance training in the pool without any equipment, but you can buy foam resistance weights for the pool if you want.  Sometimes I use a noodle or whatever floats are around to create more resistance.  I do lots of leg strengthening in the pool.  My favorite move is doing a push up on the steps of the pool, so that my chest is just barely out of the water, and then doing kicks behind me in sets of 100.  Sometimes I do 100 kicks splashing and if I have any juice left, I do 100 kicks without splashing, which is actually much harder on your muscles because you have to have control to do that.


The last piece of workout gear I bought myself was a pedometer, which tracks how many steps you take in one day. I bought a cheap one for $8, but they have really fancy ones for over $100. This has nothing to do with Dr. Levine's program, I just thought it would be a good motivator for me to see my progress over time.  When I first bought it, I was only doing about 500 steps per day, because I was stuck in bed most of the time.  Now I am up to 2000 steps per day on most days, and on really good days I'm doing 5000 steps.   There are still some 500 step days now and then, and those are usually the days right after a 5000 step day, so it's because I've over done it on a good day.  Most personal trainers will tell you to get 10,000 steps per day for overall good health.  I'm working on it, but not there yet.


I will be finishing up Dr. Levine's program in September, assuming I can stick with the schedule and not repeat too many weeks.  My goal is to get myself healthy and strong enough to catch the end of the surfing season in late September.  Even if could just get one day on my surfboard, it would be worth it to have worked out hardcore for 3 months.


If you want to learn more about Dr. Levine's  POTS exercise program, you can e-mail Tiffany at his office and she will send you some paperwork to fill out with your doctor (THR-IEEM-POTSRegistry@texashealth.org).  You don't have to go to Texas to see Dr. Levine and the program is FREE.  The program will be sent to your doctor and he or she will supervise you during the program.

My Lidocaine Mystery SOLVED? It's Hypokalemia Sensory Overstimulation (probably)!

So one of my super weird symptoms since I woke up with POTS a year and a half ago is that I am non-responsive to "caine" drugs like Lidocaine and Novocaine.  This was never a problem before POTS, as I was always numb and drooling like an idiot after dental procedures - the way you should be if the Novocaine is working properly.


If you've read some of my prior posts on here, you may have heard about my Lidocaine/Novocaine mystery.  Early this past spring, when the surgeons tried to use a scalpel on my neck to insert a chest port (a pretty minor procedure) after giving me a shot of Novocaine, even though I was under anesthesia, I totally freaked out on the operating table, tore off the safety straps that hold all patients on the table when under anesthesia, and attacked the surgeon to prevent him from cutting me.  He said I went bonkers when he started to cut me with the scalpel, probably because I wasn't numb enough.  Thankfully I don't remember any of this because I was under anesthesia.


Well, a new neurologist I saw today may have figured out what is likely causing this weird problem in about 5 minutes. He thinks it's Hypokalemic Sensory Overstimulation.  FYI... "hypokalemic" means low potassium.

I have had low potassium levels for the past year and a half.  At first I was just drinking coconut water and eating bananas and white potatoes trying to increase my potassium naturally. That wasn't enough, but my doctor was reluctant to give me a potassium supplement because too much potassium could cause dangerous heart arrythmias.

In addition to the brawl I started in the OR when they inserted my chest port, I've had another situation involving 'caine' drugs not working.  This past May I went to Cleveland Clinic and they tried to do a biopsy on my stomach (looking for amyloidosis). They had me on the OR table, with a drape so I couldn't see what the surgeon was dong to my belly.  He gave me a 5mL injection of Lidocaine, to numb the area before he took the biopsy. Then he pinched me with his foreceps to see if I was numb yet. Nope, I could still feel everything. He gave me a second 5mL of lidocaine, this time with bicarbonate added which makes it work better in some people. Nope, I still felt everything. He cancelled the biopsy, because it wasn't just a little skin poke, it was a 1-2 inch cut into my stomach to retrieve fat tissue from around my stomach. The surgeon said, come back and next time we will knock you out before the procedure so at least you won't remember it. I happen to have my potassium levels checked by another Cleveland Clinic doctor the next day and it was really low.

For about 1 year before the Cleveland incident, I had what I described as "sensory overload." My sense of smell was heightened (like a canary in a coal mine), my sense of taste was heightened, my startle response was through the roof, anything that touched me unexpectedly (like a tiny little gnat landing on my shoulder) made me jump out of my skin, and things that were only supposed to be slightly painful (a blood draw) were excruciatingly painful.  Sometimes I would scream as if I was being sliced with a machete just from a blood draw - ridiculous, I know!

After all of this hypersensitivty, some of my doctors thought I was just a nervous nelly or a bit of a drama queen, but anyone who knew me before POTS had it's way with me knows that's not the case. I used to donate blood regularly because I am Type O- (the universal donor that anyone can take) and that I was more of a rough and tumble tomboy than a drama queen - usually fearless in the face of bodily injury (drove 3 hours in a snowstorm with a mangled arm bone after a snowboadring wipe out, and I never shed a tear, maybe just a few F bombs because I was mad about ruining my ski season with a cast).

After the Cleveland blood test showed such low potassium levels, my family doctor started giving me a daily oral potassium supplement, and now my levels are back to the normal range. I noticed that my heightened sense of smell and taste have gove back to normal recently, and my startle response isn't as bad as it used to be, but it's still a little high (grrrrrr-maybe I need a larger dose of potassium?).

So I saw a new neuro doctor today and happened to mention my non-repsonsiveess to Lidocaine in response to his question about having any weird symptoms. He was very interested in this weird little fact, and started doing research on the internet as I was going over my other records with him. He kept going back to the Lidocaine issue, which I really thought was odd, but hey, at least he wasn't ignoring my weird symptoms like so many other doctors have. So sure enough, after about five minutes he pulls up this article on Hypokalemia Sensory Overstimulation and tells me that some people with low potassium don't respond to "caine" drugs like Lidocaine and Novocaine, because those drugs work on potassium channels. He says sometimes if you take a potassium dose before getting the Lidocaine shot, it will work properly. OMG!  I literally wanted to give this man a hug, but I just said thank you about 1000 times before leaving the office.

I am supposed to go back to Cleveland and have that stomach biopsy under anesthesia next week. I am going to get them to check my potassium the day of the surgery and if it's low, correct it, and then try the Lidocaine before they knock me out. So much better to NOT have anesthesia, because that seems to trigger a 1-2 week flare up of my POTS symptoms every time.

I want to see if there is a reason I have low potassium, since I shouldn't because I'm eating about 3000 calories a day of super healthy foods.  There are some genetic causes of low potassium or 'channelopathies' that cause your potassium channels to be abnormal.  When I return from Cleveland, the new doc is going to try to get to the bottom of the low potassium levels.


Stay tuned to see how the biopsy goes at Cleveland next week... will a potassium pill make the Lidocaine work, or will I end up sick for 2 weeks from anesthesia?

Social Security Disability and Dysautonomia: What You Need to Know

The author, Lauren Stiles, is an Attorney from Long Island, New York. She was diagnosed with autonomic neuropathy and POTS in 2010.

     

     Some people with dysautonomia are unable to earn a living sufficient to support themselves or their families. This problem is not limited to dysautonomia patients. In fact, one in nine Americans lives with a severe disability and according to a study published by Hofstra University Professor Dr. Frank Bowe, more than a quarter live in poverty, more than 75% earn less than $20,000 annually, and fewer than 50% have private health insurance.

     You may want to consider applying for Social Security if your dysautonomia symptoms are severe enough to prevent you from earning a living, if your daily medical care limits your spouses ability to work, or if you are caring for a child with a disability.  Please note that as of June 2011, the spousal caretaker federal benefit is not available to couples in same-sex marriages or civil unions. The federal government does not currently recognize same-sex marriages or civil unions, however state disability assistance programs may be available if your state recognizes same-sex marriages or civil unions.

     There are two types of Social Security assistance you should know about. The first is called Social Security Disability Income (SSDI) and it is meant for individuals who cannot work enough to earn a living because of their disability. Sometimes members of a disabled person's family and disabled children can receive SSDI benefits as well. The second type is called Social Security Supplemental Income (SSI). SSI is meant for individuals who are living in poverty, whether or not the situation is caused by a disability. Some people may qualify for both types of Social Security assistance, which is called concurrent eligibility. While each person's situation is unique, this article will attempt to give a general overview of the SSDI program. You may want to consult an attorney with expertise in social security applications or a disability services organization before applying for either of these programs, to make sure you present the best application possible and maximize your likelihood of getting approved. Before applying, you should also visit Social Security's website to learn as much as you can about the approval process.

     In order to qualify for SSDI, there are various tests the federal government has designed to qualify applicants. The first is called the recent work test, which sets a timeframe you had to have worked in based on your age. The second is the duration of work test, which sets the total years you have to have worked, also based on your age. For most people, you must have paid a certain amount into the Social Security system before you can qualify for SSDI benefits. However, there are many exceptions to these tests that allow certain disabled children, disabled young adults who have not worked much, or older adults who have been disabled since childhood to still qualify for SSDI.
     

     The next test is whether you fit into the SSDI definition of disabled. This is not necessarily the same as other disability definitions used by insurance companies or employers. SSDI is only available to those who cannot do the work they did before they became disabled, who cannot adjust to other work because of their disability and who have a disability expected to last one year or more or to result in death. There is a list of specific conditions which automatically qualify as disabled on the Social Security website, but if you do not have one of those conditions, Social Security will evaluate your claim individually.

     For example, let's say you worked as a pilot for several years before you developed POTS. Once you developed POTS, you started passing out all the time, which made it unsafe for you to be a pilot. For the sake of discussion, let's say your doctors can't find any medical therapy that prevents you from passing out all the time, so you cannot work as a pilot while you are experiencing these symptoms. Let's also assume that being a pilot is the only thing you know how to do and the only thing you were ever trained for. If your doctors confirm that your disabling POTS symptoms (those symptoms that prevent you from working) are likely to last more than one year, it is likely that you would get approved for SSDI, even though POTS is not on the list of conditions that automatically qualify as a disability.

     However, if you were trained as a graphic designer before you were a pilot, and your POTS symptoms don't prevent you from working a graphic designer on your laptop from the own comfort of your couch, it is possible that Social Security would deny your claim for SSDI. This is because Social Security doesn't only look to see if you can do your current pilot job, what they really look at is if you could engage in any substantial gainful activity(SGA). In 2011, SGA is defined as having the ability to earn $1000 per month ($1640 per month if you are blind). So if there is any job you are properly trained for and you can physically do it despite your POTS symptoms, and that job could earn you $1000 a month, you probably won't qualify for SSDI. Social Security doesn't take into account the fact that the jobs you may be qualified for may not be available. Just because the economy is in a downturn and you can't find a graphic design job that pays at least $1000 a month working from home, doesn't mean you'll get approved for SSDI.

     Social Security also looks into whether or not you can take measures that would enable you to overcome your disability enough to work. For example, if you are a bus driver and you can't work because your vision suddenly became very blurry, but your doctor says that if you wear corrective eyeglasses your vision with be perfect again, Social Security will require you to try wearing eyeglasses to improve your vision before they considered you disabled. If the eyeglasses fix your vision problem so that you can drive the bus again, your SSDI application would be denied. It's a bit more complicated when it comes to medications, because a medicine might help your disabling symptom, but sometimes can cause dangerous side effects or other disabling symptoms. The rule of thumb with medications is that if you are refusing to try what your doctors have prescribed to alleviate your disabling symptom, you will probably be denied SSDI, unless your medical records can explain why you are not taking that medication (i.e., you are allergic to it, you have tried it in the past with another doctor and had a bad reaction, it is contraindicated with other drugs you are also being prescribed, etc.).

     Probably the most important thing you can do when preparing to submit your SSDI application is make sure the Social Security Administration has detailed paperwork on the severity and symptoms of your illness and how it impacts your ability to work. POTS, MSA and other forms of dysautonomia are not common enough for the social Security reviewers to know what your symptoms are like. You have to explain in great detail what your day is like, and what your limitations are. Tell them every debilitating problem you have to deal with on your bad days and make sure your doctor has documented all of your symptoms. Maybe you have trouble focusing your eyes, and your job requires you to read. Maybe you have trouble speaking without getting very short of breath, and your job requires you to speak throughout the day. Maybe you can't stand for long periods of time, and your job requires you to stand up all the time. You want to tell Social Security about the symptoms that prevent you from doing your current job, and also symptoms that prevent from taking on another job you might otherwise be qualified for. Using our pilot example from above, the frequent fainting would prevent our POTS patient from working as a pilot, and if he also had severe vision problems or motor coordination difficulties, perhaps he cannot regularly work as a graphic designer from home either.

     You should speak with your doctor before you apply and make sure he/she understands how important the application is to you. Ask your doctor to carefully document all of your symptoms so that when Social Security asks for your medical records, there is something written about each of your symptoms in your doctor's files. Social Security can contact every doctor who has ever treated your dysautonomia, although they usually only know which doctors have treated you based on the names of the doctors you provide them with on your application forms. If Social Security wants records from your doctor, they contact the doctor directly and there are laws that require the doctor to respond. If the doctor is slow in responding, it will delay your application. You may not even know if Social Security has contacted a particular doctor, and if they have, you also don't know exactly what that doctor may have sent to Social Security. Therefore, I recommend getting your own copies of the most important tests results and doctors correspondence before you apply, so that you can send in copies of those important records with your application.

     As the old saying goes, "he with the most paperwork wins." If your doctor is not the type to take detailed notes on every symptom you tell him about, you can make his job easier by giving him a detailed list of all of your symptoms and asking him to submit it along with the rest of your medical records when Social Security contacts him. You can put your name and the date on the top of the typed symptom list to make it look as professional as possible. Use proper medical terms like, “severe vomiting two to three times daily,” and “persistent vertigo,”rather than, “I puke all day and my head is spinning like a washing machine.”

     Once you have familiarized yourself with the process and taken the time to gather your records and prep your doctors, the application itself is fairly simple. You can apply for SSDI online or you can make an appointment to fill out the application at your local Social Security office by calling 1-800-772-1213. 

     It takes an average of six months from the date you complete the application to the time of the approval or denial decision. If you are approved for SSDI, the maximum benefit check you can receive in 2011 is $2,224, but most people receive much less than that. You cannot receive payments for the first five months of your disability, so you usually start receiving benefits on the six month. If Social Security takes a long time to make its decision on your application, you can get a retroactive payment for the months you were waiting once your are approved.

     If you are approved for SSDI, you are required to notify Social Security if your medical situation improves or if you begin to work again. Social Security will periodically review your case, and you may have to provide documentation from your doctor that you are still disabled. While there is no hard and fast rule, most cases are reviewed every three to five years. If you are starting to feel a little better, but you're not quite sure it is a permanent improvement, Social Security has an Incentive to Work program that let's you return to work for a trial period before your benefits are stopped this is to let you test the waters and see if you are really healthy enough to return to work. In that period, you will get your regular paycheck and your SSDI check. If you are able to work successfully for a few months, your benefits will eventually cease.