May 29, 2011

Gardening-my cure for POTS

OK, the title is a bit misleading.  Gardening has not cured my POTS, but it is one of the best things I have come up with to help me feel better and cope with the major life change that POTS has thrown at me.

First, there is the physical activity benefits of gardening.  Then there's the mood boosting/cheer me up aspect of it.  There's also the great joy in having fresh, nutritious organic food for my family to eat without having to deal with a trip to the food store.  And finally, I've even managed to make a few bucks here and there selling veggie and herb plants I don't have room for.

Here's what I'm growing so far this year - all veggies grown from seed and all organic:
Kirby cucumbers          Lemon cucumbers          Sugar Snap Peas
Zucchini                       Watermelon                     White icicle radishes
Red radishes                 Red Bell peppers             Tabasco peppers
Heirloom peppers         Baby spinach                   Leaf Spinach
Mesculun Lettuce Mix  Arugula                            Thyme
Flat leaf parsley           Greek Oregano                Spearmint
Chocolate Mint           Pineapple Mint                 Cilantro
Savory                        Eucalyptus                        Edible lavender
Rosemary                   Genovese Basil                 Nasturtium (edible flowers)
Blueberries                 Strawberries                      Beach plums

And tons of plants from seeds/cuttings/bulbs:
Lilacs                         Montauk Daisies               Hydrangeas
Impatiens                  Coreposis                          Thumburgia (black-eyed susan vine)
Columbines               Sweet Pea Vines               Morning Glory Vines
Coreposis                  Bulbous Buttercups           Liatris
Cosmos                     Pansies                              Petunias
Mimosa                     Cantebury Bells                Mini Daffodils
Regular Daffodils     Tulips                                Mini Grape Hyacinths
Regular Hyacinths    and more I can't think of...

Doctors are always telling us POTSies to get as much exercise as possible.  Easier said than done!  Substantive exercise is VERY hard to do when you can barely stand up without passing out.  Gardening is a great activity because you can do most of it sitting down, and when you have to stand up, it's usually not a far walk to grab the shovel or the flower pot or whatever it is you got up for.  When I do have severe lightheadedness or a pre-syncope episode, I just lay down in the grass or wherever I happen to be in the garden.  It's actually kind of fun to just plop yourself down in the grass and stare at the clouds for a few minutes - unless the ground it wet because it just rained - then I find myself cursing my POTS.

My greenhouse is about 100 ft away from my veggie garden, and both of these spots are about 100 ft away from my house, so I do get a really good work out walking back and forth between the garden, the greenhouse and the house.  Some days I can make it all the way without stopping, even though I'm always short of breath.  Other days, I have to take a pit stop and sit down along the way to get my tachycardia under control and catch my breath.  Conveniently, my hammock is right between the garden and the greenhouse, so that's where I plop myself when I cannot make it all the way.

Some days I cannot even get out of bed at all, and that's another reason gardening is great, because you can do it when you feel good and skip it when you don't feel good. Your plants will not be mad at you for missing a day's work, and they will not give you make you feel guilty about ignoring them.  Although I always set my sprinkler on a timer to go off every 3 days just in case I have a long episode of not being able to get out of bed - don't want the plants to die while I'm out of commission.

Probably just as important as getting exercise is keeping your spirits up.  There's no denying that POTS makes you feel like crud most of the time, and like any chronic illness, it's easy to get depressed or just down right moody.  My life was busy and vibrant and fun before I suddenly got sick, so it was very hard for me to adjust to being sick and unable to enjoy the things I used to enjoy, like surfing and snowboarding.  Gardening has been my saving grace.  I feel so at peace when I am sitting in my garden.

I have good "thinking time" in the garden too. I take delight in watching an earthworm dig his way under my blueberry bush or ants crawling through the grass carrying pieces of leaves or cookie crumbs 10 times bigger than they are.  Watching these little critter really makes me realize that my health problems are really insignificant in the grand scheme of things.  There is a natural order to the world and it has gone on like this for millenia.  Life will go on whether I'm sick or not, so I have to do everything I can to enjoy everyday that I am blessed to be alive.  Just as I'm having a meditative moment, a random thought will pop into my head... I wonder, do earthworms and higher order animals get dysautonomia?  Do monkeys get POTS?

Gardening is something I look forward to and try to work on all year long.  Even in the middle of winter, I am sketching out my veggie plot and combing through seed catalogues.  I was in my greenhouse starting seeds in February!  I also try to save as many plants as I can from one summer to the next, bringing them indoors or putting them in the greenhouse, so there is always something that needs tending to.

As I mentioned before, I have started to sell a few spare plants here and there.  Not making any real money on it, but I'm trying to figure out a way to do that.  I am growing 500 beach plum plants right now, and hoping to turn that into a small business - selling the plants for beach restoration projects and the fruit for jam/jellies/pies, etc.  We're calling it the Long Island Beach Plum Farm and if all goes well we'll be selling the jams, jellies and other products this fall under the name Hampton Beach Plum Co.

Perhaps one of the reasons I have thrown myself into gardening so much is that it is one of the few things I can control.  I've spoken with lots of POTSies and we all seem to be very upset by the fact that we no longer feel in control of our bodies.  We want to feel normal again, and we're trying with all of our might to do that, but we don't have control over our autonomic nervous system (which is why it's "autonomic" in the first place!).  So maybe I can't control the dilation of my pupils and my blood vessels, but I can decide how much spinach to plant and how often to water it, etc.  And maybe it's also because gardening gives me something productive to do with my time.  I can't stand not being able to work and be a productive person.  But there is nothing more rewarding than sinking your teeth into a big juicy watermelon that you grew from seed and nurtured all summer long.

If any of you POTSies want to start a small garden and you want some tips, feel free to contact me.

May 22, 2011

How to Be Comfortable & Safe In the Hospital

If you have POTS, you may spend more than your fair share of time in Emergency Rooms or admitted to the hospital, for treatments or diagnostic testing. I have been in the hospital too many times to count since I first started developing POTS symptoms last year, so I've accumulated some tricks to help me and my family be more comfortable during a trip to the hospital.

1. Bring all of your daily medicines and vitamins with you to the hospital in the original bottle if you can. This makes it easier for you to remember exactly what meds you take and the doses you take, and the pill bottles usually have the prescribing doctor's name and phone number on it, which can come in handy when you are seeing a new doctor in the ER who may want to consult with your regular doctor(s). Also, if you take meds on a very specific time schedule, it can be pretty hard to get your meds in a timely manner in the hospital. First you have to get one of the doctors in the hospital to put in an order for the medication with your nurse, then the nurse has to order it from the pharmacy, then the pharmacy has to fill the order and deliver it to your nurse, then your nurse has to find the time to bring it over to you and most hospital nurses have six or more patients to tend to, so they are very busy. I've noticed that the nurses usually give out meds only three times a day - AM, lunchtime and bedtime. If you need a pill an hour before dinner - good luck with that!

Most hospitals have a strict policy that does not allow patients to take their own medications from home, because if there is an emergency the doctors need to know exactly what drugs you have taken and when you last took them.  Plus they want to make sure you aren't sneaking some illegal drugs while you are under their care.  Sometimes you can ask your doctor to write an order for the nurses to allow you to take your own meds. Sometimes you can't, but I will confess to taking my own meds at my regular dose and time when the hospital staff just can't get their act together. I learned the hard way after waiting 2 days for my asthma meds, and then having a bad asthma attack before they showed up with the correct asthma drug a half hour after the attack started.  Screw the rules, don't let yourself get sick if that's what happens when you skip your meds.

2. Bring your own easy to put on pajamas or sweat pants, with no metal on them. They might force you to wear those hideous drafty hospital gowns, but you can usually get away with wearing your own PJ bottoms, and sometimes they will even let you skip the gown and just wear a t-shirt or tank top.

3. Bring slippers or socks with rubber soles. Hospitals don't like you walking around in bare feet or sock feet, unless the socks have rubber treads, to prevent slips and falls. Many hospitals now give you thin socks with rubber treads, but they smell like gross plastic and some have latex in them, so watch out if you are allergic to latex.

4. Be friendly to your nurses and aides, even if you think they are jerks. Most nurses in the hospitals are totally overworked and tired, so cut them a little slack. Also, they are your key to happiness and comfort in the hospital, so try to get along well with them if you can.

5. If there is a nurse or aide or phlebotomist (person who draws your blood) who is truly horrible to deal with, you have a right to ask to speak to the nursing supervisor or charge nurse in your unit or floor, and you can explain the situation and ask for your nurse to be switched to another patient. Keep in mind that they could be short staffed and you may not get a new nurse, so you are only pissing off your existing nurse even more, and the new nurse you may get will know about your problem with the prior nurse, and may not be too thrilled to help you after that.

6. Many hospital charge $6-$10 dollar per day each for rental of the TV and the telephone.  If you are in the hospital for several weeks, that can add up to a huge bill really quickly.  So I try to get a room where my cell phone works, and I bring my laptop to watch free movies my family borrows from the library for me.  If the hospital has free internet, you can even watch lots of TV shows and movies for free on

7. Ask for a window bed if at all possible.  The best time to ask for this is when they are working on the paperwork to admit you.  Tell them you get kind of claustrophobic if you don't have a window, and it would make you more relaxed if you had a window view.  Quite often, you just get the first bed available and you have no choice.  But if you are going to be there for a week or more, considering asking the head nurse on your floor to move you to a window bed if one becomes available during your stay.  Keep in mind this creates extra work for the cleaning staff, because they have to clean the window bed space before you move there, and then they have to clean your space after you leave it - so be sure to dole out lots of pleases and thank yous.  Also, if you have a loud roommate who screams all day and night or someone who has a bad infection, it's O.K. to asked to be moved as soon as a bed becomes available.

8. If you have food allergies, ask to speak to the dietitian and don't be afraid to call the kitchen to make special food requests if the dietitian never shows up.  For example, if the hospital kitchen keeps sending up fish and it's just disgusting, you can tell them you have a fish allergy so they won't send you the fish anymore.  Yes, this is lying, but I'm not running for sainthood here - just trying to share my tricks for having a comfortable hospital stay.  And I am allergic to some fish, so I'm not lying when I say it.  similarly, if you can't eat gluten, tell them that and don't always believe them if they tell you certain menu items are gluten free.  Ask to see the ingredients or the packaging.  I had a major NYC hospital telling me that Cheerios were gluten free, and they are NOT gluten free because of the gluten contaminated oats in them.  They also told me their chicken was gluten free, and while plain old chicken is gluten free, their chicken has spices and flavorings added that did have gluten in them, which I discovered when I asked to read the packing labels listing the ingredients.  Your best option is to have your family bring stuff form home if you have lots of food allergies, but that is not always possible.  Things that can't be contaminated in the kitchen are a good choice too - like baked potatoes with the skin still on them, bananas and boxed items like juice and yogurt.

9. Ask you doctors questions about the tests they want to run on you.  Make sure you know the rules about whether you can eat or drink beverages before the tests, and stick to those rules.  Try to have a game plan with your doctor - why are you in the hospital and what are you trying to accomplish while you are there.  What's the time frame in which your doctor expects all of your tests can be completed?  If you get very nervous during enclosed tests like MRIs, ask your doctor to put a note in your chart telling the nurse to let you have a small dose of Xanax or Benadryl before your test to keep you calm.  If you have never taken either of these drugs before, ask your doctor to let you try it at least once before the test so you can see how it makes you feel.

10.  Ask you doctor to print out copies of your tests results as soon as they are ready.  Most doctors can do this with the click of a button when they are seeing you in the hospital.  if you wait to get home to get your records, you will probably have to pay a fee of 25 cents to $1 per page and it could take months.

11.  Be friendly to your roommate if you have one.  They are probably just as bored and homesick as you are.  You know what they say, misery loves company.

12. If you are in the hospital for more than a few days, it's important to bring some photos or reminders of home to keep your spirits up.  My family always sends me cards and I always tape them to the walls - especially the cute handmade ones from my little nieces and nephews.

13.  Open the windows in your room if possible.  Hospitals are filled with germs and some fresh air is good for you.

14.  Speaking of germs, make sure everyone who examines you or touches your IV equipment or draws your blood washes their hands and wears protective gloves.  It's not only to protect them from your germs, but it's also to protect you from the germs they could have picked up form the 100 other patients on the floor that day.  If you see someone changing your IV lines with no gloves on, or not wiping the connectors with alcohol before connecting the IV to you, or trying to stick you with a needle without cleaning your skin first, say something!  I had a nurse actually try to hook me up to an IV line that had fallen on the bathroom floor, and she didn't even wipe it with alcohol pads first.  This is disgusting, and not to mention very dangerous.  Most nurses know better than to do that, but you never know who you're getting, so keep an eye out to protect yourself.  I asked her to change the tubing and she refused, so refused to allow her to hook me up to the IV, so she called my doctor to tattle on me, and when my doctor came in and I told her what happened, she reported the nurse.  The IV tubing actually had blood all over it, which was probably mine from the surgery I had that morning, but your can't just assume it's clean when you are in the hospital.

15.  Before you sign any discharge papers, make sure you are really ready to go home.  Do you have a game plan for following up with your doctor?  If you need a wheelchair, has the discharged nurse arranged for that?  If you need a visiting nurse, when will they be able to come to your house for the first visit?  Do you have all of the prescription slips you need?  Do you have a way to get home?  Do you have your follow up appointments scheduled?  Are you ready to go home, or do you want a second doctor to review your record to see if you still need to be an in-patient?  Don't sign the discharge forms until your are 100% ready to go.  In most states, you have the right to a review of your discharge if you disagree, but keep in mind you may also have to fight with your insurance company later on if your doctor says discharge and you refuse.  One time, I had an attending doctor who only spent about 1 minute looking at me and had never met me before.  He said I was ready for discharge, even though I wasn't.  My nurse must have known he was being an idiot, so she told me "you know they can't send you home if you are having severe chest pains."  Funny enough, I was having severe chest pains and severe tachycardia, so they called in a cardiologist to look at me when I refused the discharge and he put me right back in bed and decided to keep me as an in-patient for another week.  It's not that I really wanted to hang out in a stinky cramped hospital room all week, but I was not well enough to be at home at the time.

Checklist of Stuff To Bring to the Hospital (most items are only if you are admitted for more than a day or two):
-all of your medication and vitamin bottles
-your regular doctor's phone number
-your insurance card, one credit card and your driver's license
-pajama/sweat pants
-tank top or other shirt with large sleeve holes (in case you have an IV in your arm)
-rubber soled socks or slippers
-your own pillow
-your own body soap, shampoo, conditioner, deodorant and body lotion (the ones the hospital give you may smell gross or you could be allergic to it)
-magazines or books to read (you can donate them to the hospital when you are done with them)
-playing cards or other quite games to keep you occupied
-cell phone (it may not work)
-iPod so you can drown out the noise of the hospital and fall asleep to some Jack Johnson or other mellow music
-laptop, especially if they have internet in the hospital or if you have movies you can play on the laptop
-snacks from home that you can't get in the hospital (consider asking a friend to bring cupcakes or cookies for your nurses too - kissing up to your nurses is a good thing)

May 18, 2011

What causes POTS in the first place?

Well, it seems like there are probably 1000 things that cause POTS.  POTS is really just a convenient name we give to a long list of symptoms.  However, the technical criteria for POTS is usually stated as an increase in heart rate of 30 bpm or more upon standing, and over 120 bpm, and then there is some disagreements as to whether the diagnostic criteria should include "without significant orthostatic hypotension" or not.   But as POTS patients know, nobody who has POTS only has just an increase in their heartbeat upon standing.  It seems like there are many more symptoms that are commonly found in POTS patients, but they haven't all made the list for the diagnostic criteria.  It's much easier to tell someone "I have POTS" than to say "I have tachycardia, erratic blood pressure, autonomic dysfunction, syncope, tingling feet, diarrhea, dizziness, shortness of breath, etc., etc., etc...."

But maybe we are not doing ourselves any favors by labeling ourselves as having POTS, because it doesn't really signify which of the many symptoms that go along with POTS each of us may have, and it doesn't signify what the cause is of any of the symptoms.

As soon as your doctor says you have POTS, you should starting asking "why?" and "what is causing it?"  It's possible you will never know, because there are lots of things modern medicine simply hasn't figured out yet.  But, there are lots of things your doctors can look for to try to determine the underlying cause of your POTS symptoms.

Generally speaking, here are some of the things that can cause POTS.  Of course, I'm not a doctor and I'm probably leaving out many important things, but this is just something to help you understand how many things could possibly cause POTS.

-anything that can damage your autonomic nervous system
-endocrine abnormalities
-severe deconditioning (just like NASA astronauts get after prolonged spaceflight)
-infections and post-infectious/Chronic Fatigue like illnesses
-genetic diseases
-autoimmune and autoinflammatory diseases
-Ehlers Danlos Syndrome and connective tissue diseases
-physical traumas, like head, neck and spinal injuries

Just by pure luck, my doctors had done a skin biopsy looking for an allergic autoimmune disease called mastocytosis.  When they looked at my skin biopsy, they didn't find mastocytosis, but the found that many of the nerves that control small blood vessels and my tiny hair follicle muscles (think goosebump muscles) were damaged and dying.  The pathologist said I had "profound autonomic neuropathy."

As soon as my doctors said I had autonomic neuropathy, the first word out of my mouth was, "why?"  This was not a metaphorical or philosophical "why?" - like a "why me God?" type of question.  This was me wanting to know as soon as possible WHAT was causing my autonomic nerves to die off.  I assume they don't spontaneous combust, so we can rule that out.  I'm pretty sure I don't have the Black Plague, so we can rule that one out too.  Besides that, just about anything can damage your nerve cells.

For example, you can get neuropathy from diabetes, toxic chemical exposure, vitamin deficiencies, infections, autoimmune disorders, genetic diseases and physical traumas (like a neck injury or surgery on your spine that went wrong).

I had blood tests to check for diabetes - nope, but I did have signs of reactive hypoglycemia, which is common in neuropathy patients.

We are all exposed to hundreds, if not thousands of chemicals on a daily basis  - usually in trace amounts and we usually aren't even aware of it.  I have had repeat exposure to various pesticides, coal dust and soot, probably arsenic since I'm an avid gardner on Long Island, NY (we have very high background levels of arsenic in our soil) and my dad was exposed to Agent Orange in Vietnam before I was born.
I had lots of heavy metal blood and urine tests.  Nothing abnormal except for some higher than normal arsenic levels in my urine, but not my blood.  My doctor suggested that could be because my body was ridding itself of past arsenic build up because I was losing so much weight when I first got sick.

I had two physical traumas that may or may not have anything to do with my getting POTS.  First, I wacked my tailbone so hard that my spine felt like it got pushed into my brain - that was a bad snowboarding fall a few days before I started to get dizzy and sick feeling.  Second, about 6 months before I got sick I experienced really bad heat stroke when I was climbing the Cape Hatteras Lighthouse in the Outer Banks on a 108 degree day.

I was tested for many, many infectious diseases.  Negative for Lyme, Bartonella, Babesia, Mono, CMV (cytalomegalo virus), AIDS 1 & 2, Hepatitis, TB, Giardia, Parasites and many others. I was IgG positive for a prior infection with the Eppstein Barr virus (which most Americans have been exposed to by age 30).  I also had high IgG levels of Mycoplasma pneumoniae, which is bacterial "walking pneumonia."  My doctors have disagreed with each other on whether a high IgG with my symptoms was a current infection or a past infection, since IgG levels usually represent past infections.  I don't know who to believe, but Mycoplasma pneumoniae infections can cause nerve damage and POTS.

I doubt I had any vitamin deficiencies at the onset of my illness since I never had any GI problems before all of this, and I ate a fairly healthy diet, and I was "well fed" which is a nice way of saying I was a little chubs.  However, even a few days of diarrhea can leave anyone with vitamin deficiencies.  After a few m months of severe GI issues I had lost 60 lbs. and I started have blood tests showing low potassium, low iron, low Vitamin D, low calcium, etc.  So those vitamin  deficits could have played a role in causing my neuropathy, but we don't really know for sure.  I am now taking lots of vitamin supplements and my levels are back to the low end of the "normal range."

So that leaves us with autoimmune disorders and genetic deficiencies.  Well, I am no expert in either field, but here is what I have been discussing with my doctors.

-Celiac Disease - a genetic autoimmune disorder in which your body produces an antibody when you wat foods containing gluten.  Gluten is a protein found in wheat, oats. barely, rye and some other grains. The antibody produced then attacks your GI tract, which can lead to malabsoprtion problems (and then vitamin deficiencies), and sometimes those antibodies can attack your nerve cells, causing neuropathy.  There are several antibody tests for Celiac, but you have to be eating gluten for those tests to work.  If you are already eating gluten free, you need a genetic test for celiac.  I am still trying to get that one, because my antibody tests were all negative, but my GI symptoms got much better when I stopped eating gluten.

-Crohn's Disease and Ulcerative Colitis - these are separate diseases, but very similar symptoms and both can lead to nerve damage and POTS - mostly because of inflammation and vitamin deficits.

-Ehlers Danlos Syndrome - this is a genetic disease that involves a problem with collagen production.  There are several forms of it, but the most well known one is connected with joint hypermobility and very stretchy skin.  It seems like many POTS patients have this, but it can be very hard to diagnose.  Cleveland Clinic doesn't think I have it, and I agree, even though I have hypermobile hips and shoulders.

-Amyloiydosis - a disease in which the body improperly stores proteins in various tissues throughout the body.  Some forms of this are genetic.  I am being tested for this at Cleveland Clinic this week since my dad has mystery neuropathy too.  First they are doing a stomach fat biopsy to look for the offending proteins, then they are doing the genetic test to look for the gene mutation that causes it.

-Sjorgen's Syndrome  - an autoimmune disease in which your body's white blood cells attack your tissues.  It can lead to dry eyes, dry mouth, painful intercourse, and lung, heart, and kidney inflammation.  There are antibody tests used to look for it, but a lip biopsy is the definitive test used.

-Lupus-is an autoimmune disease in which your body's immune system can attack any of your own tissues.  This causes inflammation, pain and damage.  Lupus can be fatal, although most people who are under medical treatments can lead a normal long life.

So these things are just the tip of the iceberg, as far as answering the question, "what causes POTS?"  There are so many things that cause POTS, and it is so important for you and your doctors to try to figure out WHY you have POTS.  It could mean the difference between getting proper medical care and making a complete recovery or suffering for the rest of your life (or even dying) from a rare autoimmune disease.  No matter what, don't give up. Keep looking for answers.  Even if the best doctors in the world can't figure out what's causing your POTS right now, there is always hope that a new disease will be discovered, or a new treatment will be found that can help you someday.

May 10, 2011

My Cleveland Clinic Experience

We left Long Island on Saturday afternoon after my best friend's first baby shower, which I wouldn't miss for anything in the world.  We were a little late in heading out, because we cooked for for me to bring with us, since I can't safely eat at any old restaurant with all of my weird allergies lately.

I had what I call a "POTS breathing attack" in the car around 8 PM.  What triggers these attacks, I have no idea, but it becomes very difficult for me to breath and I get really dizzy and twitchy feeling - like I'm being smothered and injected with pure caffeine at the same time.  Normally, I lay down and try to distract myself from how uncomfortable I am, but that's pretty hard to do when you are in a car going 80 mph on a winding, bumpy road.  For some reason, long car rides seem to make my symptoms worse, so pulling over and letting it pass wouldn't help.  I would probably have another attack as soon as we started driving again.  The only thing that seems to help these breathing attacks is my albuterol inhaler or an albuterol nebulizer treatment, although it doesn't feel like an asthma attack and the docs in the ER usually don't hear any wheezing, so I have to argue with them to give me the albuterol nebulizer for an "off label" use since you are only supposed to get it if you have wheezing.

We made it about half-way across PA on Route 80 by 10 PM and decided to find a side-of-the-highway hotel.  First we stopped at a Holiday Inn, but when I went into the room, it smelled like brand new carpet and paint... mmmm, nothing like the smell of fresh Volatile Organic Compounds  in the morning!  The windows in the room didn't open, so we just couldn't stay here.  I checked out other rooms, but the entire hotel was in the process of being painted and re-carpeted, so this was an asthma attack waiting to happen.  The front desk was nice enough to refund out money so we could find another hotel.  Just up the block there was a Comfort Inn, and there was no fresh paint or carpet anywhere in sight -  it was just run down enough to fit my breathing needs.  The parking lot was filled with rusty pick-ups and a racing team truck, and there was a disproportionate number of middle aged fat guys with mullets hanging out in the lobby.  Thankfully, I am not allergic to mullets (although I wish I was). Anyway, we woke up as early as we could on Sunday morning and headed out for Cleveland.

It was a pretty uneventful drive on Sunday.  There were some strange road signs in western PA and Ohio along the way.  We saw a sign for the Jersey Shore when we were about 10 miles from the Ohio border - that was pretty random considering we were in the middle of nowhere.  There were also signs on Route 80 in western PA that said "Buckle Up, Next Million Miles."  I bet the Department of Transportation guy who coined that term thought he was pretty clever.  My husband most enjoyed the "70 mph Speed Limit" signs when we first hit the Ohio border.  He decided that meant he could go 90 mph, instead of his normal 75 mph.  Did I mention I live with Speedy Gonzales?

The first thing we did when we hit Cleveland around 3 PM was search out the Rock and Roll Hall of Fame.  Yup, there it is.  I was surprised that it is right on Lake Erie, since they don't show that in any of the photos.  We didn't go inside because they close at 5:30 PM and it's $22 per person.  If I'm shelling out $66, we are going to be there more than an hour or two.  Maybe later in the week.

Then we checked into the Embassy Suites hotel.  They gave us a room on the 13th floor.  I didn't realize we were staying in a skyscraper, which kind of freaked me out.  Ever since 9/11, I have been really afraid of tall buildings.  This actually started a few days after 9/11, when my family and I went to volunteer at Ground Zero with the American Red Cross.  We were stationed in the large Marriott right next to "the pile" and we were cooking and serving industrial sized portions of food for the Ground Zero workers.  I was walking kind of fast carrying a large tray of brownies in the kitchen, and I tripped and almost fell down an open elevator shaft.  I have never been so spooked in my whole life.  The elevator doors had been pried open and broken when they were looking for people, but apparently a beam from the Trader Center had plunged through the roof of the Marriott and damaged the elevators.  There was nothing besides a one-inch strip of yellow police tape between me and a 20+ story plunge down an elevator shaft.  And no one had warned the volunteers about the elevator shaft - perhaps because they didn't know about it.  As you can imagine, things were a bit disorganized and chaotic down there in the first few weeks following 9/11.  Anyways, that's what triggered my fear staying in tall buildings.  I highly doubt Al Qaeda is planning an attack on Cleveland, but I was still not happy about staying on the 13th floor.  So the front desk was nice enough to move us down tot he 5th floor, which is the lowest floor they have guest rooms on.  OK, but I'm still not thrilled about it.

Sunday night I had another one of my POTS breathing attacks, and my inhaler did not help.  It was getting worse, so after about a half-hour going downhill fast, we finally called 911 and I was taken to Cleveland Clinic by ambulance.  This was not the introduction to Cleveland Clinic I wanted.  The ambulance EMTs wouldn't give me an albuterol nebulizer treatment "off label" because I wasn't wheezing, but as soon as I got to the ER, a respiratory therapist came to see me and he knew about POTS (what a relief!) and he gave my oxygen and an albuterol nebulizer treatment.  Within 5 minutes after the treatment, my breathing was back to almost normal and I was ready to go home - but of course, you never get out of the ER in 5 minutes.  We got there around 9:30 PM, and we didn't get back to the hotel until 3 AM.

Without much sleep due to our ER visit on Sunday night, we managed to make it to my Monday morning appointments.  I met with Dr. Frederick Jaeger, a cardiologist specializing in autonomic disorders.  He was very nice and he did not rush me through the appointment.  He answered my questions and spent a good deal of time reviewing my past medical records - no small task since I came armed with two 3-inch binders filled with over 1000 pages of medical records and over 15 CDs of prior MRI, X-Ray and CT studies.  We organized them by month, put sticky tabs on the interesting findings, and made a ten page "cheat sheet" list of every test I had since I've been sick (putting the abnormal test results in bold font) to help the Cleveland Clinic docs be able to sort through the relevant and not so relevant info.

Dr. Jaeger definitely knows his stuff.  Prior to my visit he had just chaired a section of a cardiology conference on autonomic disorders.  He told me the experts are thinking about renaming POTS and separating it into two different named illnesses.  One would be the type of POTS more closely associated with post-viral and deconditioned patients, and the other would be the type of POTS associated with neuropathy - which is the type that I have.  He didn't indicate that they have agreed upon new names for these subclasses yet, but he said something about acute pandysautonomia for my type of POTS, which is a term I have seen used by other top researchers.  To breakdown that term, "acute" means it's an active process and that it came on suddenly, "pan" means widespread or throughout the whole body and "dysautonomia" means there is a dysfunction of the autonomic nervous system.  So combined together,  that means a sudden onset of active autonomic nervous system dysfunction spread throughout the whole body.  POTS may have been easier to remember, but acute pandysautonomia is a more accurate and descriptive term than POTS is, at least for POTS that is related to autonomic neuropathy.  He did not mention what they have in mind as far as renaming the post-viral or deconditioning type of POTS.  I will try to find that out form him before I leave.

After I saw Dr. Jaeger, I was sent to a pulmonary consult, since my bad breathing episodes are one of my worst symptoms.  They are sending me for a battery of pulmonary tests including a chest CT, spirometry, a 6 minute walk test and a cardio pulmonary stress test, which they told me is pretty much me going full blast on an exercise bike until I collapse.  Sounds like fun.

Dr. Jaeger also lined me up with a neuro consult, which is probably the most likely to be able to figure out what the heck is actually causing my neuropathy.  I met with Dr. Chemali, who was also super nice.  He spent three hours going over my history, examining me and answering all of my questions.  He did not look at his watch even once during the exam and our appointment went long after the rest of the office had closed up shop.  A perfect gentleman and a very sharp doctor.  He trained under Dr. Chemlinsky, who trained under Dr. Philip Lo at Mayo Clinic.  Dr. Lo is the guy who "practically invented POTS" according to a friend of mine who is a doctor at Mayo Clinic.  Dr. Lo invented the QSART machine and was heavily involved in writing the first major research paper in which they coined the phrase "Postural Orthostatic Tachycardia Syndrome."  Before Dr. Lo's journal article, POTS had been known by numerous different names, which made it harder for researchers to track how many people had it and made it harder for practitioners to have reliable diagnostic criteria.  Anyways, back to Dr. Chemali - he is sending me for neurological tests I was begging my NYC neurologists for, and the NYC docs didn't even seem to know what those tests were.  This week and next, I am scheduled for a Thermoregulatory Sweat Test, a QSART test (which I already had today), a lip biopsy to look for Sjorgen's Syndrome, a stomach fat biopsy to look for amyloidosis, a foot biopsy to look for small fiber neuropathy, and a bunch of blood tests to look for genetic, autoimmune and other possible causes of my neuropathy.  I had everyone one of these on my "rare diseases I want to be tested for" list I had come up with after extensive research.  Dr. Chemali wants to run all of those tests, and I didn't even have to ask for them - he just said "OK, this is what we're going to do..."  So happy to find a doctor ho is on the same page as me!  Although he's definitely many pages ahead of me since this is his field of expertise and I'm just a newly minted medical research junkie.  He also mentioned tests for some other rare diseases I haven't even heard of (my research must be slipping!) so we can rule those out too.

I am relieved and also a little nervous about getting the results from all of these tests.  If everything comes back negative and I leave here without any answers, I will be emotionally devastated.  But if one of these tests comes back positive, it probably means that I have a lifelong degenerative disease to look forward too - also emotionally devastating.  So, even though I try to be a "glass is half full" kind of patient, I know that now matter what, I'm probably going to leave here in tears.  But laying in bed at home wasn't getting me anywhere and there is always a chance that if they figure out what is causing my neuropathy, that we can tailor a treatment plan to try to slow it down or minimize the symptoms - and maybe someday they will have a "cure" for whatever rare disease this may end up being.  Better to know what is coming my way that to go around confused for the rest of my life!

Stay tuned for more news in the coming days....

May 7, 2011

Cleveland Clinic, Here We Come!

Myself, my husband, and my mom are headed to Cleveland, Ohio this week to see Dr. Frederick Jaeger, a POTS expert at the Cleveland Clinic.  We are driving from NY because I was not comfortable with the idea of flying, in case I started to get symptoms on the plane.  It would be hard ot lay down and get comfortable, so we decided to make the 8 hour car ride.  We are splitting it into 2 days, four hours tonight and four hours tomorrow.  We're hoping to get to Cleveland early enough to check out the Rock and Roll Hall of Fame as a Mother's Day treat for my mom.

I just bought a digital camcorder so I could record my journey...  stay tuned!

May 2, 2011

Who has POTS?

One of my online POTS friends, Annie Morales, is compiling a list of people who have been diagnosed with POTS.  I want to help her add to that list, so if you are willing, please post the following.  If you want to be included anonymously on the list - then just use your initials or something.

Current Age:
Age at onset of POTS like symptoms:
Age at time of diagnosis:
Were you misdiagnosed with something else before you were diagnosed with POTS?:
Anything else you want to tell us?: