Jan 17, 2012

Calling All POTSies! Volunteers Needed for a New POTS non-profit!

Shhh.... I am letting you all in on a little secret.  I am launching a new national non-profit organization with some of my POTS friends and their families.  The primary goal of the organization is to raise money for research into the causes and better treatments for the various forms of POTS - and to someday find a cure for every form of dysautonomia.  We also intend to work with all of the existing POTS and dysautonmia related organizations to form an umbrella group that can advocate for more government and private funding for dysautonomia research.

We aren't announcing the name of the group and going public yet because we want out launch to be BIG, so we can get media coverage and use the launch as a fundraiser.  We want our organization to be running smoothly before we launch, so we need to recruit volunteers to help us with certain projects.

Many of these things can be done from home on your laptop or with a phone.  We understand that many of our volunteers will be POTS patients, so we are trying to adapt the way we run our organization so that even those patients who are bedridden and hanging out on Facebook all day can contribute to the cause.

Please read through these volunteer projects and let us know if there are any you are interested in.  If you have any questions about these projects, or you have other ideas or something you'd like to volunteer to help with, please e-mail me at potsgrrl@gmail.com.  Be sure to list the specific project # you are referring to.

And stay tuned for our official launch in the coming weeks...

Volunteer Project List

Project 1 – (looking for one or two volunteers) Find out which regional/local POTS/dysautonomia support groups already exist – ask around, look on Facebook and Google, create a list of regional groups and obtain name and contact info for person to reach out to in group. Also try to find out when/were they meet, if at all. See Sjogren's Syndrome Foundation support groups website for an example before you start: http://www.sjogrens.org/home/get-connected/support-groups/us-support-groups

Here are a few regional groups we know of:
NY POTSies – serving the NY/NJ/CT tri-state area
Contact Name: Lauren Stiles
Contact Info: laurenstiles@gmail.com
Notes: Group is based on Facebook. Members meet informally/socially a few times per year.

Texas Association for Dysautonomia Awareness (T.A.D.A.)
Contact Name:
Contact Info:
Notes: Group meet regularly and has speakers from the medical community give presentations and seminars.

STOP POTS Virginia
Contact Name: Claire Foust Martin
Contact Info: stoppotsvirginia@gmail.com
Notes: Group is web based (Facebook and blog) at this point, but meetings are encouraged amongst members.

Tuscon POTS Group
Contact: Coppelia Tarantal (on Facebook)
Contact Info:
Notes: Group is web based and has social gatherings several times per year.

Project 2 – (numerous volunteers needed) If there is no regional POTS/dysautonomia support group in your area, you can start one! Find other two or three people who have POTS in your state/city/region of the country. Form a Facebook group or an e-mail list for these people. Tell us the name of your group, the region you serve, the contact info (name, phone/e-mail) for the person in charge and when/where you meet, if you plan to meet in person at all. Groups may be very small at first, but we want to include all of the regional support groups in a directory so we can ask POTS doctors to forward newly diagnosed patients to the local groups. Eventually there will be more people reaching out to the local groups. The model we are using for this is the one used by the Sjogren's Syndrome Foundation. Check out their list of local support groups for inspiration:

Project 3 - (looking for one or two volunteers) Review American Autonomic Society listing of physicians, DINET list of physicians. Jodi Rhum's list, TDC's list and any other list of POTS doctors you can find. Ask other patients to recommend good POTS doctors. Contact each physician's office to: (1) determine if the contact info is accurate and up to date, and (2) ask if they specialize in diagnosing and treating POTS. If the info is out of date, try to find accurate contact info and reach out to them. If they say they don't diagnose or treat POTS/dysautonomia, cross them off the list. We don't want to be sending people to doctors who don't want to deal with POTS patients. Compile a new up-to-date list of POTS doctors with name, address, phone, fax, e-mail and specialty (Neurologist, Electrophysiologist, etc.)

Project 5 – (looking for one volunteer) Make a video of different POTS exercises. No commentary, other than this is how to do the exercise. Explain modifications for bedridden patients or wheelchair bound patients if possible. Look presentable and speak clearly. We only want good quality video footage. We want everything about this non-profit to be very professional looking. Even better if you have a doctor, PT or a trainer showing you how to do the exercise. Rowing, recumbent bike, reclined workouts, and pool exercises would be great to show.

Project 6 - (looking for one volunteer) Make a video showing and explaining POTS counter maneuvers to help with orthostatic intolerance. Explain modifications for bedridden patients or wheelchair bound patients if possible. Look presentable and speak clearly. We only want good quality video footage. We want everything about this non-profit to be very professional looking. Even better if you have a doctor, PT or a trainer showing you how to do the exercise.

Project 7 – (looking for 6-12 volunteers per year) Volunteer to run one of our monthly international Skype meetings for POTS patients. We also need to write up simple 'ground rules' for participation and we need to have a simple training program for people to do before they run a meeting, so they know what to do to run a Skype meeting and so we know they understand the ground rules and how to use Skype.

Project 8 – (looking for 6-12 volunteers per year) If you have a doctor who is a POTS expert, we want you to ask them to join us for an “ask the expert” web chat. We will give them all of the questions from the patients in advance, so no surprises, and we will do our best to filter out the dumb questions and repetitive ones. We expect each web chat to last about 30-60 minutes. We will use Skype for the web chat, and we will type up a transcript for the benefit of patients who were unable to attend the live chat. We need:: (a) you to help us find doctors willing to be the expert (b) someone to collect the patients questions in advance, host the Skype chat and ask the questions to the doctor and (c) someone to type up a transcript of the chat, or to record it, so we can put it on our website for other patients to read.

Project 9 - (looking for one volunteer) Newsletter Coordinator – we want to produce a semi-annual newsletter. Spring/Summer and Fall/Winter each year. This will be an online newsletter to start. We need someone with experience laying out and coordinating the production of a web based newsletter. You will be working with text, photos, and graphics. We want a professional layout that is consistent in each edition of the newsletter. The coordinator will also help manage the content of the newsletter and will help organize the authors, editors and photographers who are also working on the newsletter.

Project 10 (looking for about 10 volunteers) We need people to write articles and regular columns for our newsletter. Story ideas: Research Update, Meet the Expert (bio of a POTS doctor), Meet the Patient (bio of a POTS patient), Events Calendar, Ongoing Research Trials Needing Participants, Treatment Spotlight (discussion of a POTS treatment and how it works).

Project 12 - (looking for about 3 volunteers) A few people with medical expertise are needed to compile a listing of all drugs commonly used to treat POTS. We want to provide a list of the drugs and a link to the drugs MedlinePlus page (example: http://www.nlm.nih.gov/medlineplus/druginfo/meds/a682549.html). To help get you started, a listing of some of these drugs is on the POTSgrrl blog (http://potsgrrl.blogspot.com/p/pots-medications-and-treatments.html), and also found in the journal articles linked to from the POTSgrrl blog (http://potsgrrl.blogspot.com/p/medical-journal-articles-on-pots.html).

Project 14 – (looking for one volunteer) Volunteer needed to assist with preparation of our annual reports. Experience with this is required. Ideally this volunteer will be an accountant/CPA.

Project 15 - (looking for one volunteer) National Public Relations Coordinator. Experience pitching stories to major media outlets and responding to media inquiries is required. We would like this person to design a press kit for patients to use to encourage local media to do human interest stories on POTS patients. Contacts within the television, print and online media industry would be helpful.

Project 16 - (numerous volunteers needed) We need POTS patients willing to volunteer to pitch their local media a news story about POTS, to help us spread with word about POTS and our organization's work. We will provide a press kit to assist you in pitching the story and how to respond to reporters questions.

Project 17 – (one or two volunteers needed) We need a National Coordinator or several Regional Coordinators for the “Lend a Hand Program.” When we hear of POTSies in need of something specific, like a wheelchair, or more general things, like help with preparing meals, mowing the lawn, or financial assistance to pay for basics like housing, food or medical care, we would like to have a person at the organization who will reach out to local churches/synagogues/community centers/firehouses in that person's hometown and ask if there is help available for the person in need. Many people would never ask for help themselves, but there are many great hometown resources out there, and if it means we have to ask on their behalf, we will try. Many times the donations are anonymous or the recipient can remain anonymous if they want to. If the program is very successful or there is a large demand, we can have several coordinators, and we can break up the work by state or by region of the country. This position would be ideal for someone with a background or an interest in Social Work.

Project 18 – (about 4 or 5 volunteers needed) We need a few volunteers to work together to compile a list of companies who provide products and services that POTS patients regularly use. For example, makers of medications used to treat POTS, compression stockings, tilt table manufacturers, saline manufacturers, ab binder manufactures, vitamin manufacturers, Nunns tablets, Thermotabs, Gatorade, pickle makers and the company that sells that pickle juice drink, sea salt companies, wheelchair companies, rowing machine/recumbent bike companies, etc. We need the address to write to for each company, preferably the marketing/sales department or if they have a charitable donation office, and if all else fails their Public Relations department. If possible, we want a contact person's name and title, and a phone number too. After we have compiled a big list, we will start writing to these companies and asking for donations. Ideally, the list will be compiled into an Excel spreadsheet with the following columns: Salutation (Mr./Mrs./Dr.), First Name, Middle Initial, Last Name, Title, Company/Division, Address Line 1, Address Line 2, City, State, Zip, Phone, Fax, Website, Name of Product

Project 19 – (one volunteer needed) We need someone with professional graphic arts experience to help us design our corporate look. We need a savvy logo/mark and letterhead. We may also need web based graphics assistance.

Project 21 – (four volunteers needed) Resident Photographers – we need quality stock photographs of POTS patients and doctors in action for use on our website and in our printed materials. Photos should be in a high resolution digital format. Attribution/credit for photos will be given. Photo topics we need are: doctor caring for a patient, parent caring for a child with POTS, teenagers with POTS, adults with POTS, men/teen boys with POTS, people “standing up” to POTS, artistic/abstract photographs of IV bags, medications, hospital rooms, equipment used in testing POTS patients, etc.

Project 24 – (one volunteer needed) – We are looking for a good PT or a physician to write a good physical therapy or exercise guide for POTS. A stipend/grant may be available for this work.

Project 27 - Get POTS on TV – we are looking for people with connections to help us get stories about POTS on popular television shows like Dr. Oz, The Doctors, Royal Pains, Grey's Anatomy, House, Mystery Diagnosis (again), True Stories of the ER, etc. Note – Lauren Stiles has two contacts with Royal Pains she can put you in touch with to start. If we don't have anyone with a connection to these shows, we will need one volunteer to draft up letters than we can send to all of these shows producers pitching a story idea about POTS to them. This volunteer will work with our National Public Relations Coordinator on this project.

Project 28 – (we are looking for 3 or 4 volunteers) - POTS in the Classroom - we are looking for elementary and secondary education teachers to help us design materials for age appropriate lesson plans about POTS. These lesson plans could be given to teachers in schools in which a student has been impacted by POTS, if the parents and student are comfortable sharing it with them. We would also love to have resources for Science Fair Projects on POTS on our website. We would even like to offer an annual prize for “Best Science Fair Project on POTS.” Kids from around the country could enter science fairs and send us copies of the materials they used, a written summary of their project and photos of the presentation of their projects (poster session or a video of a speech they gave about their project). We then review all of the entries we receive in one school year and give an award to the student who gave the best presentation. We can divide up the contest by age K-6, 7-9, 10-12.

Project 29 (one or two volunteers) - School Liaison - we are looking for an attorney with experience in education and/or disability law or a parent who has had to work with their school district to coordinate home schooling, modified scheduling and/or accommodations to help keep children with POTS in school. The goal of this program is to serve as a support for parents who are having a hard time getting their schools to provide the services they need to ensure their child's educational and social development needs are being met. Our organization will not directly contact a school, but will attempt to provide constructive suggestions to parents on how to achieve the best results for the child.

Project 30 – (three or four volunteers needed) - Online Auction Coordinators – once our website it up and running, we plan to hold online auctions from time to time, to raise funds for dysautonomia research. Our Online Auction Coordinators will gather interesting items to auction from donors, identify fair minimum selling prices for each item, create brief written descriptions of the item being auctioned, take photos of the auction items, ensure delivery to the winning bidder, and make sure that thank you letters are sent to individuals and businesses who have donated to the auction and those persons who have purchased items from the auction. Our auction coordinators will work with the National Public Relations Coordinator to gain exposure for our online auction events. This can be done from home.

Project 31 – (numerous volunteers needed) – Luxury Auction Volunteers – if you have celebrity memorabilia, or have a connection to someone who can get you some, if you have connections that can get us VIP backstage passes to concerts or tickets to sporting events, if you have a connection to someone willing to donate luxury goods (Coach purses, real jewelry, vintage wines, artwork, sports memorabilia, etc.) we want to hear from you! We are looking for unique items and experiences for our online auctions. Golf foursomes at exclusive country clubs, dinner with a celebrity or well known corporate CEO, small plane rides or helicopter rides, fishing charters, timeshare vacation weeks or rentals, cruises, etc. Travel agents are a good connection to help us get donated trips, plane tickets, and cruises.

If there is some skill or talent you would like to contribute to our organization that is not listed here, please let us know.  If we are going to raise millions of dollars per year for POTS research, we need all the help we can get!

Jan 8, 2012

Why is IVIG not listed as a potential POTS treatment?

Those of us with POTS and some medical research savvy have come across the POTS 101 journal articles written by doctors who are considered POTS experts.  They have written these summary articles for other doctors, who don't specialize in POTS, so they know what to do when a POTS patient walks in their office.

In these POTS diagnosis and treatment summaries, there is usually a list of medicines that have been used to treat POTS with varying success.  There are lots of disclaimers in these articles, noting that some of the medicines work better with some forms of POTS, and other medicines are only used in refractory POTS that can not be treated successfully with the first line medications.  Of all of these POTS summary journal articles, I have never seen any mention of IVIG.  Perhaps that is because the doctors writing this articles are usually cardiologists, and as such, they tend to focus on drugs that impact the heart (beta blockers) and the rest of the cardiovascular system through various mechanisms (midodrine, SSRIs, Flourinef, Clonidine, etc.).  

Like many POTSies, I went the cardiologist route at first, since the my most obvious symptom was the insane endless tachycardia I was experiencing.  The cardiologist, as expected, put me on beta blockers.  That only made me sicker, because beta blockers drop your blood pressure and make you very tired.  They are also not good for asthmatics and can make Epi-Pens not work, so if you carry an Epi-Pen for severe allergies, don't take a beta blocker without discussing the Epi Pen issue with your doctor!  A few cardiologists later and I was still being told to try more beta blockers.  Then I learned enough about POTS to realize that I needed a neurologist who specialized in autonomic neuropathy.  If you think it's hard to find a cardiologist who knows about POTS, just try finding a neurologist who specializing in autonomic neuropathy.  I think there are literally less than 50 neurologists in the whole country who legitimately specialize in that field.  I even went to two neurologists in NYC who claimed to be autonomic experts, but I knew more about the physiology of POTS than they did and they made no recommendations other than exercise and "just get used to being sick."  Seriously?  Thankfully I found some real autonomic neurologists at Cleveland Clinic, and then later at Columbia University in NYC.  

As I have discussed many times on this blog, one of the neurologists at Cleveland Clinic figured out the cause of my POTS.  I have an autoimmune disease that attacks my autonomic nerves (and a bunch of other nerves and organs too).  They recommended that I get high doses of IVIG (intravenous immunoglobulin immediately, to prevent any further nerve and organ damage, and to hopefully reverse that damage that had already occurred and that had caused my disabling POTS symptoms.

The more I began to post about this on this blog and on Facebook, the more people responded and said they were getting IVIG for their POTS symptoms too, because they also had some autoimmune problem causing their autonomic neuropathy.  Just from chatting about it on this blog and Facebook, I have found at least 10 women getting IVIG to treat their autonomic neuropathy/POTS symptoms.  They have Sjogren's, Lyme DIsease, CIDP or Guillane Barre as the root cause of their POTS symptoms.

Then I started poking around on the Sjogren's patient group pages, asking if any of the Sjogren's patients have autonomic neuropathy or if any of them frequently pass out and have tachycardia.  Within a few days, I had 20 women e-mailing me saying they've been passing out or almost passing out nearly daily for years, they have terrible tachycardia and their doctors can't figure out why - and since they have Sjogren's their doctors are usually rheumatologists, not cardiologists or neurologists.  So I told all of them about POTS and encouraged them to see neurologists and EP cardiologists.  So far, three of them got back to me and were diagnosed with POTS!!!  This is after years and years of suffering with POTS symptoms and not knowing it was called POTS and not knowing it was probably caused by Sjogren's.  So now these ladies are headed back to their rheumatologists and demanding the proper drug therapies to address the autonomic neuropathy - high dose steroids and/or IVIG, and if all else fails, Rituxan.  Just like many cardiologists aren't too familiar with POTS, many rheumatologists don't seem to know that Sjogren's can cause autonomic neuropathy, since it is relatively rare within the Sjogren's population.

Then the Sjogren's Syndrome Foundation just had an article in their Moisture Seekers newsletter about a young woman who developed acute polyneuropathy after a viral infection, which then turned into Sjogren's Syndrome.  She was getting high dose IV steroids and IVIG and was getting her life back.  This is the same thing I have, although it took my doctors a year and a half to figure it out.  My neuropathy is not just autonomic, it's sensory and motor too, and possible some facial nerves are involved since I have terrible pains shooting up the side of my face/forehead sometimes.  My doctors are continuing to unravel my diagnosis and figure out everything this Sjogren's mess has caused.

So if I can find 20+ women with POTS and autonomic neuropathy getting IVIG just from some basic online conversation, why isn't IVIG mentioned as one of the drugs that may be helpful to POTS patients?  I'm going to guess it's because it's so expensive and/or the doctors writing those articles aren't that familiar with autoimmune neuropathies - not a popular medical specialty.

So I have decided to do something about this.  After I compile some more anecdotal evidence of people I've met with POTS getting IVIG, and after I've organized my journal research on the use of IVIG for idiopathic dysautonomia (essentially another name for POTS with no known cause), I am going to write a formal and polite letter to each of the doctors who have written the POTS summary articles.  Hopefully the next time they update their POTS summary articles, they will include autoimmune testing in their recommendations for a POTS diagnostic workup, and they will include IVIG as a possible treatment option for some POTS patients.

Also, it seems to me that so many POTS patients either developed POTS after a viral infection and/or they have autoimmune tendencies (Celiac, thyroid problems, vasculitus, skin rashes, hair falling out, etc.).  I would argue that some of these patients should be given a trial dose of IVIG to see if it would help.  I know it is quite expensive, and insurance companies probably won't pay for a trial dose for an unknown autoimmune condition.  However, having been bedridden with horrific dysautonomia for over a year, I would have tried ANYTHING to get better, and I am sure many POTS patients feel the same way.  There are several published case studies and other reports documenting the success of IVIG for idiopathic dysautonomia.   I would like to see more research in this area. 

In the meanwhile... let's spread the word about IVIG as a potential treatment option on the POTS boards and the Sjogren's boards, etc.  Power to the patients! :)

Jan 3, 2012

Exercise for POTSies

For most POTS patients, exercise can help you lessen your symptoms, or at least make them a little bit more tolerable.

That is not to say that POTS is caused by a lack of exercise or laziness or deconditioning.  On the contrary, many POTS patients were athletic overachievers before coming down with POTS suddenly.  I have met POTS patients who were dancers, soccer players and ER nurses who never sat down during a 12 hour shift.  I myself was a pretty athletic person before POTS.  I was on a 7 day snowboarding trip and I had even gone cross country skiing UPHILL only days before getting sick with my first POTS symptoms.  I don't know many 31 year old women who are athletic or motivated enough to ski uphill for fun.  I also enjoyed surfing, kayaking, mountain biking, skate boarding and I spent every free moment outside gardening.  Sitting down and relaxing on the couch was never something I wanted to do. My "relaxing" honeymoon in Hawaii consisted of hiking in the wettest place on earth (through mud up to our thighs!), mountain biking down a volcano to the ocean, surfing and swimming in every waterfall we could find.  So to anyone who says POTS is caused by deconditioning, you need to get your facts straight!

That being said, I do think POTS can cause us to become deconditioned.  If you can't walk because you pass out every time you stand up, and you get tachycardia and shortness of breath just from lifting a bag of groceries, over time, and perhaps very quickly, you are going to avoid such activities and your body will become deconditioned.  Deconditioning can make your POTS symptoms worse and can give you other symptoms that don't feel good either.  No exercise and laying down all day can alter your gastric motility, can lead to acid reflux, can lead to weight gain or loss, can cause aching joints, loss of bone density, sore muscles, loss of muscle mass, etc.  If you never get outside, you can become deficient in Vitamin D.  With all of these physical symptoms going on, I think it's pretty easy for some people to become depressed too.  Again, not saying POTS is caused by depression, but I think severe disabling POTS can cause depression - as can any severely disabling illness.

So what can a POTSy do to ward off the evil deconditioning monster?  First, take a look at where you are right now.  Are you bedridden?  Are you able to shower and dress everyday, but spend most of your time sitting or relaxing on the couch?  Are you able to get up and cook and clean, but not really able to walk around in a food store or do other shopping on your own?  Are you able to drive?  Are you able to go to school or work, but have many sick days and spend most of your time at work or school just barely functioning and resting as soon as you come home?  Are you feeling OK at work/school on most days, but still have some mild symptoms everyday, and some really bad POTSy symptoms every once in awhile?  Are you able to participate in recreational sports without much of a problem?

The severity of your POTS will help determine what type of exercise you begin with.  If you are fully bedridden for a year, you are not going to be able to start out with the same level of activity as someone who is driving to school everyday and only feels POTSy once or twice a week.

I was almost fully bedridden for about a year because of POTS, so I will lay out the exercise plan I followed from that point.  I am not saying what worked for me will work for all of you, so just think of this as a guide and some inspiration.  I am no longer bedridden.  I am able to go food shopping on my good days and I just recently drove for the first time in two years - albeit only a few blocks.  I am continuing to strive for improvement so I can regain all of the normal activities in my life I have been missing out on for the past two years since POTS knocked me for a loop.

STAGE 1 - Bedridden, Weak, Sore, Aching Joints, Ugggh - Just Miserable!
The following exercises are things you can do while laying down in bed.  I started doing a mix of these exercises everyday.  I would squeeze in a few minutes of exercise several times throughout the day, because even a minute or two of doing them would get my pulse racing and I would get short of breathe.  After awhile, I kept pushing myself and I built up a bit of a tolerance and some endurance.  Instead of only being able to do something for a minute, I was eventually able to do it for 10 minutes.  Instead of only doing 10 crunches a day, I could do 50.  One good trick I found to remind myself to work out is to do a little something during every commercial break when I was watching TV.  No one likes watching commercials anyway, right?  Also, if you spend lots of time on your computer, try setting a timer to go off every 10 minutes to make you stop doing your computer activity and stretch or do 5 minutes of deep breathing or a yoga pose.  I have a Mac, and I found a great free widget to do this called Prod Me.  Finally, try to get a little bit of a routine going.  When you first wake up, try an easy exercise like stretching or deep breathing or a gentle yoga pose or two.  Before bed, again, stretching and deep breathing, and those will relax you and help you sleep better.

Start with gentle stretching in bed - lay however you are comfortable.  Try to stretch each of your muscle groups, from your ankles to your shoulders and neck, one by one.  This can raise your heart rate, because it gets your blood flowing more than laying down and not moving.  Sometimes just 3 minutes of stretching can be all someone who is bedridden can do.  Do it and be proud.  Later in the day or tomorrow you will try for 5 minutes.  The day after that, try for 10 minutes.  If you have to break up the 10 minutes into 2 five minute sections or 5 2 minute sections, that's fine.  Just get your joints and your limbs moving.  If you are able to sit up for part or all of the stretching, that is good.  Try to have perfect ballerina posture when you are sitting in bed and stretching.  Picture a string coming out of the top of your head and someone gently pulling on the string.  Raise your head up and relax your shoulders down.

Try some deep breathing.  There are some free Mindful Meditation downloads and online players on the UCLA website.  I found them helpful and there are short ones and long ones if you get more into it.  Even though you are probably going to modify it and lay down to do it, it is still a form of exercise and it can be very relaxing.  Proper breathing gets your blood flowing and rejuvanates your body.  In fact, I have felt so calm after completing these meditations that I actually fell asleep.  If you can get yourself to fall asleep while doing these, then you can keep these links handy to help you sleep next time POTS is keeping you awake at 5am.

ABC Of Yoga is a great website to learn about beginner yoga poses in the laying down position.  It has animated cartoon people to show you the move from begining to end and it explains the ideal order to do the moves in to get the best benefits.  They also have sitting position poses for when you are ready for that.  Yoga is relaxing, builds lean muscle and helps you stretch.

If you can, get some light weights for your arms.  If you don't have weights, that's fine.  Bottled water and cans of soup work well too.  I worked out with two Poland Spring bottles everyday when I was in the hospital for two months.  While laying down flat on your back, lift the bottle up with both arms at hte same time like a bench press and then bring the bottle down to your chest.  Tighten your muscles as you do this.  Try to do sets of 12.  If you can sit up, lift you arms straight out in front of you and try to hold them out straight for 3 minutes.  This is hard, so try it without weights.  Keep good posture as you do this.  Take only one weight in both hands, put it above your head and then bend you elbows so the weight drops down behind your head.  This works the muscles below your armpits and in the back of your arm.  If the head of your bed is up against a wall, lay flat on your back and put your arms above your head touching the wall.  Then do "push offs" off the wall - this only works if you bed doesn't slide across the floor.

Take a couch pillow or a regular bed pillow folded in half, put it between your knees while laying on your back with your knees bent, and squeeze it like you are trying to squeeze a lemon.  This is the free version of the thigh master.  Repeat these long slow deep squeezes for 12 reps.  You can also do a similar exercise with a pillow and your arms.  You ca bend your elbows and squeeze the pillow between your elbows, or you can put it between your flat open palms and squeeze it like your are trying to put you palms in a praying position.

Good news.  Your legs are as heavy as weights and they are free!  Lay on your side and do some old fashioned side left lifts.  Bend you knee and and do thigh lifts.  Lay flat on your back and lit one leg at a time up and down.  For a serious tummy workout, lift BOTH legs up at once while laying on your back and try to hold your feet about 6 inches off the ground.  This is hard, but just try it.  A little easier, and also kind of fun, is to write the alphabet in the air with your toes while laying down on your back.  Do the whole alphabet with each foot.  If you get bored of the alphabet, write your name or the names of everyone you love with your toes.  Change the height of your foot to work out different muscles.  I did this in the hospital for 2 months and I had pretty nice quads when I was done!

Try some pikes - watch this Livestrong video to learn how.  There are other great laying down core moves explained on Livestrong, like knee drops, criss crosses, cork screws and more.  Of course, old fashioned sit ups and bicycle kicks work too.  Core strengthening is good for posture and overall health.  These exercises can be challenging, so do what you can and if you have to stop or slow down, that's OK.  Just promise yourself to try more later in the day or try again tomorrow.  Don't give up!  You can do it!

The bottom line for everyone who is bedridden is that your have to get your body moving however you can.  You may get tired, you may get sore, you may feel defeated sometimes.  But eventually you will start to feel a little better.  If you have a stiff neck from laying on propped up pillows for a year, neck stretching and changing your position in bed will help that.  If you have lost your leg muscles, all of these leg exercises will help with that, but only weight bearing exercises - walking or leg presses on a machine, will build up your full leg muscle mass and bone density again.   My POTS motto is:  SLOW PROGRESS IS BETTER THAN NO PROGRESS!

STAGE 2 - Able to Sit Up Sometimes, But Still Experiencing POTS Symptoms While Sitting and Not Able to Stand or Walk Much At All

After about 2 months of doing my supine exercises in bed, I began to try sitting up more often.  First, I was propping up more pillows behind my back and head in bed.  Then I was leaving the bed flat, but sitting up in bed, not using any pillow or anything.  I was really just challenging myself to sit upright as long as I could without passing out.  I did this several times a day, almost everyday.  At first, just a few seconds, then a few minutes, and eventually a few hours.  Then I started hanging my legs off the side of the bed.  I was forcing myself to sit upright even though I literally felt like I was going to die.  I did this with someone in the room with me, and they knew that if I passed out, they were to lay my head down and elevate my feet above my head.

I also followed my "exercise during all commercial breaks" rule and if I wasn't watching TV and I was on my computer, I would set my Prod Me clock to go off every 10 minutes to remind me to sit up.

It is around this time that I purchased myself a Polar exercise heart rate monitor.  There are other brands, and you should be able to get a good one for under $80.  If you want to wear it while swimming, look for a waterproof one.  This will come in handy as you progress to more vigorous exercise.

I also was lucky enough to try aquatherapy with a Physical Therapist at this stage in my recovery.  I would not have gone into a pool on my own or even with my mom, because at this point I was not able to walk and getting me in and out of the pool would have been dangerous.  The therapy  pool had special steps that were very gradual and made it easier to get in and out.  Also, the pool was only 5 ft deep, for safety reasons.  And they kept the pool not too hot, which is good for POTSies since a very hot pool can cause dilation of our blood vessels, which means lower blood pressure and more of that faint feeling.  The first time I was able to try the pool, I was able to stand up straight, unassisted, in the pool for 45 minutes!  I was so happy.  While in the pool, I did leg lifts, circles with my feet on the floor of the pool. arm resistance exercises with floats and simple walking back and forth across the pool.  As soon as I got out, gravity pulled my blood down to my toes and I felt POTSy all over again.  I wanted to live in the pool.

Once you are able to sit up for a few hours, start challenging yourself to stand up more often.  Your instinct may be to stand still, because you may be dizzy and lightheaded, however, for me, I found that walking was actually easier than standing still.  This is because walking gets your leg muscles engaged and helps pump the blood back up to your chest and head.  Standing just lets gravity pool your blood in your legs and makes it more likely that you will have a pre-syncopal or syncopal episode.  Again, I would try to stand up during every commerical break.  Sometimes I would reach my arms to the sky and stretch,  Sometimes I would walk to another room and back.  Sometimes I would do the Warrior yoga pose during commercial breaks.  While that requires standing in place, it really engages your leg muscles, so for me anyways, it didn't trigger any fainting sensations.

STAGE 3 - Sitting is Usually Tolerable, Standing and Walking A Little Bit, But Not Without Great Effort

Time to kick it up a notch and get ready for cardio!  You are going to focus on reclined cardio exercises. Recumbent biking, rowing and swimming are your main cardio workouts.  You are going to start out with 15 minutes a day, and then eventually end up at an hour a day of cardio.  You will also keep doing weights at least once a week and a few of the brief relaxing/stretching/yoga movement exercises everyday.

You should have an exercise heart rate monitor by now.  You should look up your target heart rate zone on Cleveland Clinic's website.  According to Cleveland Clinic:
  • You gain the most benefits and lessen the risks when you exercise in your target heart rate zone. Usually this is when your pulse is 60 to 80 percent of your maximum heart rate. In some cases, your health care provider may decrease your target heart rate zone to begin with 50 percent.
  • It is not recommended to exercise above 85 percent of your maximum heart rate. Intensity at that level increases both cardiovascular and orthopedic risk with minimal, additional health-related benefit from the exercise.
So let's say you are a 30 year old female.  Your predicted maximum heart rate is 190.  To keep your heart rate below the 85th percentile of your predicted max, you should keep it below 162 bpm.  That should be your absolute max during the workout.  In fact, you should probably start out much lower than the 85th percentile, because POTSies tend to develop exercise intolerance when they get their heart rate up too high during a workout.  Exercise intolerance can force you to stop working out and can leave you feeling drained for the rest of the day, and even the next day.  That is why it is so hard for us to workout, because our heart rates shoot up so high so quickly that we go from resting to exercise intolerance in less than 5 minutes.

I started out at the 50% percentile of my predicted max, which for me was 120.  I found it fairly easy to do RECLINED cardio exercises keeping my heart around 120 bpm.  In fact, my heart kept going a little higher than that - 128, 130 area and I still felt OK.  I worked out at that level for a few days, just to see if I would be OK the next day too.  I was.  Then every few days I would work out 10 minutes longer at the same heart rate, or I would bump up my heart rate 5 beats and work out for the same amount of time.  I split my cardio into rowing and recumbent biking, which I was able to do at home because I bought myself a combined rower/recumbent bike.  The cheapest place I found that sold them was an exercise equipment shop in Colorado.  They shipped it to me, and it took about a half hour to put together with my husband.  I swam in a neighbor's unheated pool whenever possible, and sometimes in the local bay.  The chilly water in the bay was a great way to increase my BP and prevent blood pooling in my legs.  In fact, getting myself really chilly in the bay in the summer would help keep me cool all day.

After I was able to do an hour a day of cardio, I really started feeling more 'normal' and less POTSy on more days of the week.  I was able to tolerate a brief trip to the food store.  In the winter, I walking around the local Home Depot or Walmart, since their stores are so huge and it was just too cold to walk outside.  Some people walk at the mall, but I don't have an indoor mall near my house.

I started replacing some of my workouts with heavy duty household chores.  Moving furniture to vacuum underneath it, ripping out shrubs I didn't like in the front yard.  Chopping wood from a fallen tree.  I am feeling pretty good sometimes, but I still have days when POTS kicks my ass and I end up back on the couch for the day, or for the week.

I do not consider myself "done" with my exercise program.  I guess I am at the end of Stage 3, and I am trying to work my way up to Stage 4, which I would consider, for myself, to be returning to work, driving on a regular basis, having fewer terrible POTSy days per week and being able to walk a mile without stopping.

Here's what one of my Stage 3 Weekly Workout Chart Looks Like:

10 minute warm up (yoga)
20 minutes weights
30 minutes cardio
10 minutes cool down (yoga, stretching)

10 minutes warm up (stretching)
50 minutes cardio (rowing)
10 minutes cool down (yoga)

10 minutes warm up (stretching)
50 minutes cardio (recumbent bike)
10 minutes cool down (yoga/deep breathing)

10 minutes warm up (stretching, yoga)
50 minutes cardio (biking & rowing)
10 minutes cool down (stretching)

10 minutes warm up (stretching)
20 minutes weights
20 minutes reclined core/leg lifts
20 minutes yoga

10 minutes warm up (yoga in the pool)
50 minutes cardio (upright exercises in a pool)
10 minutes cool down (relaxing swim in the pool)

10 minutes warm up (stretching)
30 minutes cardio (rowing/recumbent bike)
20 minutes walking/dancing
10 minutes cool down (yoga)

STAGE 4- Almost "Normal"?
I probably shouldn't offer advice on how to get to Stage 4, because I haven't gotten there yet myself, but here's my game plan.  I have recently stopped getting my IV saline, by my own choice, and this has made my life easier (no heparin, needles, chest port emergencies, home case nurse visits, hooking myself up to tubes, etc.), it has also slowed down my exercise routine considerably, but I consider this a necessary step for me.  I don't want to live on saline forever, so I am going without it and pushed ahead with my game plan to get to Stage 4.  I plan to continue with intense household chores, continue daily reclined cardio, weekly weights, try walking longer distances, and I would REALLY like to try running in the pool, as I had started to do last summer.  I will have to wait for summer to return, as my local indoor pools are heated too much and drop my BP like a hot potato.  I just need to stop having so many involuntary couch potato days.  I don't think those are due to POTS.  I have a second diagnosis, Sjogren's Syndrome, and that seems to be causing most of my days on the couch now -not my POTS tachycardia/low blood pressure symptoms.

Please share your exercise tips here, and if anyone has gotten to Stage 4 or better, please let us know your secret!!!!  And remember, SLOW PROGRESS IS BETTER THAN NO PROGRESS!  You can do it!

Jan 1, 2012

Here's something simple all of us can do to help raise awareness about POTS.

Jodi Epstein Rhum, the mother of two children with POTS and a passionate and well informed POTS advocate, has written a book - POTS-Together We Stand, Riding the Waves of Dysautonomia.

Ask your local public library to purchase this book.  Many public libraries will keep a list of books that local people ask for, and when money becomes available, they will purchase the book and put it on the shelf near the checkout desk with the other new books for everyone in the library to see.

Then you can take out the book for free to read it, and take it out again for your friends to read, and take it out again for your doctor to read. If all of us ask our local library to do that, and all of us have a public library that probably serves a few thousand people - that's a lot of people who will have better access to information about POTS!

Or you can purchase this book and when you are done reading it, donate it to your local library.  It will always be there if you want to read it again or share it with someone else.

Here's a link to purchase the book on Amazon:http://www.amazon.com/POTS-Together-Stand-Riding-Dysautonomia/dp/1466371501/ref=sr_1_1?s=books&ie=UTF8&qid=1320671356&sr=1-1