Jump to content
  • The Member Stories section of our site is a place where members can submit their own stories of their experiences as a person living with dysautonomia.  We also link to member stories that have appeared in our newsletter.  Please note that Member Stories are not edited by DINET and the views and beliefs expressed in the articles are strictly the views of the member.   Please note that the stories submitted are reviewed for content and should follow the guidelines of the site.  We do our best to publish each story submitted,  but publication is at DINET's discretion. If you would like to submit your story, please write to webmaster@dinet.org - include "member story" in the subject line. 

Member Stories


Gail’s Journey

By edriscoll, in Member Stories,

By Gail
June 2008
In December 2003, I got a new job at the Medical College of Wisconsin, my first full-time job in years.  I’d been lucky to work a minor part time job (mostly on Saturday mornings) for a friend, and stay home with my kids the rest of the time.  Then in the fall of 2003, my husband left his profession to start a new phase of life working for himself, making it necessary for me to pick up the responsibility for benefits and regular income.  My youngest child of three started school that year, and having Dad at home to drop off and pick up from school made it much easier for me to leave that stay-at-home life behind. 
That December also brought the horrible news that one of my nephews, then age 18, was diagnosed with leukemia, and not just any leukemia.  He had a juvenile form that is dreadfully difficult for anyone over age 12 to overcome, and it was a “special,” mutated form that was resistant to many treatments.  My life was rocked by this news, and I found myself emotionally and physically taxed by all the stressful events happening in my life.  My GI function was all over the board.  I was getting weaker by the day.  I had a difficult time swallowing without choking (and as a singer, the vocal weakness became a source of constant irritation and frustration), and I had abdominal pain and nausea constantly. 

The surgeon I worked for made a phone call for me and got me into the GI clinic with his choice of physician.  They tested me for GERD and found nothing.  But my GI doctor is a brilliant man who had once treated a patient with problems similar to mine, related to damage to his C6 nerve.  This doctor saw my history, including the 2 bad car accidents I’d been in that had caused whiplash in the same place on my neck.  He ordered an MRI of my cervical spine and, yep, you guessed it—they found C6 nerve damage.  He immediately referred me to Dr. Safwan Jaradeh, who did an EMG, then a small-fiber EMG, and diagnosed me with myasthenia gravis in the fall of 2004.  Blood work also showed very low B-12 levels, so I started on oral (sublingual) B-12 and Mestinon (pyridostigmine).
While both of these helped me, I still had periods of severe dizziness, and the abdominal pain and nausea came and went.  I had a tilt table test done, which showed nothing—no POTS.  I also started going to our SpineCare clinic for back and neck pain, mostly related to sitting in a horrible office chair all day long.  While the PT and chiropractic care helped, the pain never completely went away, and my boss finally ordered a good chair for me.  I still had pain but not nearly as much.  I got on with my life.  The muscle twitching and excessive foot, leg, hand, and facial muscle cramps started to ramp up, but were mostly bearable.
Dr. Jaradeh referred me to Dr. Alexandru Barboi, who was starting up a new specialty clinic for people “like me” with myasthenia.  We had a wonderful first visit where we went over, in detail, the past few years of my life and what had led to my diagnosis.  Then he asked questions about my childhood and adolescence, ordered a “re-do” of my tilt test, and then had a discussion with me about dysautonomia vs. myasthenia.  The light went on!  All those symptoms that seemed so completely unrelated suddenly coalesced into a “real” diagnosis—sort of.  I know you all understand what I’m saying.
Soon after this, I got a new position in a different department, and it was a job I was very excited about.  The job was wonderful, but the physician I worked for was a nightmare.  I was sick daily—nausea, diarrhea, abdominal pain.  I started losing weight (not entirely a bad thing, just the wrong way to do it).  The stress was really getting to me.  The fatigue became overwhelming, and Dr. Barboi prescribed Provigil, which is usually prescribed for people with narcolepsy.  It’s helpful, and I can’t function if I miss a day of it.  The weakness, lightheadedness, and abdominal pain continued, and I changed departments again, this time to a great situation.  With the constant fear and stress engendered by the previous position gone, I expected to feel better.  Not so.  Despite the release from the worst of the stress, I still had abdominal pain, nausea, dizziness, and exhaustion.
However, I’ve learned a few things over the last year, in particular, that have sustained my good attitude about life in general.  I’ve discovered that I’m one of the luckiest people with dysautonomia in the world because I have Dr. Barboi in my corner.  I’m an employee where he is employed, so I have the distinct advantage of direct communication and easier access to my physician than most people.  I have a husband who is patient with my roller coaster life, even though it often frustrates him, and he can’t really empathize.  I have a manager who is kind and understanding when I have a bad day, and I work for a physician and a nurse practitioner who are trying to learn more about dysautonomia just so they better understand what I’m going through.  I am able to work, play, and do yard work like most people (with more physical repercussions, but I can at least DO the things that are difficult for many with this condition).  My kids see a mom who cooks and cleans, who takes them to the beach and out for frozen custard afterward, who throws the baseball around at the park, and who rides bikes with them sometimes.
There are days when it’s so hard to roll out of bed, get ready for work, make it through the day without making a major error that could affect a patient’s health, and go home to face making dinner, helping with homework, walking the dog, etc.  But I can do those things, so I make myself do them because I’m afraid that if don’t, I would be doing less than I should be.  I sometimes push myself too hard to be too perfect and to be too healthy.  Sometimes it’s okay to just sit down and be sick, to huddle under a pile of blankets because I can’t get warm, or to cry or lash out at the limitations my body dishes out on a seemingly random basis. 
Dysautonomia is different for everyone.  I feel so bad for the people who can barely get out of bed or the recliner most days.  I don’t have that limitation often.  But I still understand the pain, the frustration, the weakness and the fog that envelopes us all on different levels at different times.  My message to all of you is this: take it one day, one hour, at a time.  Live in the moment now rather than waiting for a better one.  Don’t waste time fighting this because you’re just fighting yourself.  It is who you are, so embrace it, get past it, and get the better of it.  Live for today, and live well.

By K. Webster
June 2008

I have been very interested to read the personal stories on the website, particularly as I do not know of anyone else who has my complaint, which can be a bit isolating, so I thought I'd add my own story to your site. Like many contributors, the early stages of my autonomic failure proved to be a frustrating time for me. My symptoms were: dizzy spells, breathlessness and visual disturbances, especially when walking. All pretty vague things, really.
The first dizziness incident occurred on holiday in France with my husband. I was 5 months pregnant at the time, and my husband had splashed out on a lovely dinner at an auberge in the countryside. The food was delicious, and I'd had quite a bit to eat and drink when I felt really dreadful and very light headed (not drunk, I promise!). I felt so bad that we had to abandon the meal, much to my husband's disappointment! I thought no more of it and continued with life, putting any tiredness or feelings of fainting down to the pregnancy. After giving birth to my daughter, I noticed feeling very unwell and dizzy after meals. At the time, I thought it was because I had resumed drinking caffeinated coffee, and it was having an adverse effect on me. Two years later, I gave birth to my son by caesarean section, which was very traumatic, and I had to go back into hospital after giving birth as I had contracted an infection of the womb and was pretty ill.
After this time, things went gradually downhill. I was having lots of visual disturbances and breathlessness, and it got to the stage that I had to stop several times when walking my children the short, flat journey of about half a mile to school each day. I was also suffering 'coat hanger' pain across my neck and shoulders.  I went to see my GP who was very sympathetic but didn't really know what was wrong with me. He referred me to a local neurologist, who in turn referred me to Professor Mathias at St. Mary's Hospital in London. I went into the neurological hospital in London's Queens Square as an inpatient and was subjected to a wide variety of tests including tilt table, 24 hour blood pressure monitor, etc. It was here that I got the diagnosis of orthostatic hypotension. This drop in blood pressure meant my brain and heart were not getting a constant supply of blood when needed for everyday activities such as eating or walking. This explained my earlier 'caffeine intolerance' after eating and my difficulties in walking the children to school.

Initially, I explored non-pharmacological measures such as special stockings, drinking lots of water, etc., but they didn't make much difference, so I was put on fludrocortisone. Unfortunately, my symptoms continued to progress, and I was put on ephedrine in addition to the fludrocortisone. After a few years, I was prescribed midodrine in addition to the other medications. Recently, I have been struggling to pursue a 'normal' life as my symptoms just seem to be getting more severe. I have had a few isolated fainting episodes after eating.  My blood pressure really sinks after meals and alcohol.  It is also very low in the mornings, and I don't even bother with breakfast, as I'd feel so lousy that this would effectively stop me from getting anything done.  I try to eat a little and often, but it is not easy to do that and care for my family.  I have also noticed that heat is really beginning to bother me, and I spend holidays either in the shade or submerged to keep cool!  Exercise is also particularly difficult.  I just about manage to swim 20 lengths, but any other form of exercise is really tricky as I have to stop for a breather or to put my head between my legs every few minutes!  At least with swimming, I am horizontal, so the blood doesn't pool in my ankles.
Last week, I was sent back to London for more tests with Prof. Mathias, who is now suggesting I try taking a drug called octreotide before meals. He feels this could greatly enhance my quality of life as it reduces the effects of eating on my blood pressure. The downside is, it has to be injected subcutaneously 3 times a day.  I haven't gone on it yet, and to be honest, I am very nervous about the self-injections.  I can see that I will have to get over these fears, especially if it means my life could be less restricted.  I wondered if anyone reading this has any experience with this particular drug.  I would be most interested to hear how you got on with it.
I also wondered if anyone who has similar symptoms to mine has any self-help tips.  Personally, I have noticed that if I steer clear of carbohydrates, my symptoms are slightly lessened. I also try to drink lots of water, tea, coffee, etc. to try to keep my blood pressure up.
Another point I thought I'd bring up is about pregnancy. I definitely noticed this coincided with the onset of my symptoms.  I noticed that another contributor had also mentioned this. When I mentioned it to the scientists conducting the tests for the Prof. at St Mary's, they were interested in this. Has anyone else associated the two things?  I wondered if my worsening symptoms might in some way be tied in with the menopause.  Mind you, this association would not work for male sufferers!
This is a much longer letter than I originally intended to write, and I hope I haven't bored you all too much. It is comforting to know that there are others like me out there, and maybe we can help each other by sharing tips.


One Day at a Time

By edriscoll, in Member Stories,

By Sue
November 2007
Hi--my name is Sue; I'm 45 years old and live in Rochester, NY.  I guess I'll start at the beginning.
I was adopted at birth and was raised with a brother and sister (also adopted but not related).  We were an average family; my parents were very Catholic and loving.  At about age 4 or 5, I wasn’t able to stand or kneel at church without feeling like I was going to faint.  I knew when I needed to sit and just dealt with it that way.  When I was 6, my mother became ill.  After years of wrong diagnoses and a stay in the psychiatric ward, she was diagnosed with multiple sclerosis.  It must have been so hard for her, but I don't remember.  She passed away when I was 10.
My father remarried the next year.  Boy, did I give my step-mother a hard time.  Now, as an adult, I thank God for her every day.  My near fainting continued, and I just dealt with it.  I was very much a tomboy and was very active in sports until 9th grade.  Then as time went on, I realized that my energy level was decreasing. I didn't want to do much of anything.  I couldn't stand for periods of time.  I felt lazy and different.  I thought it was due to starting menstruation and painful periods.  So, I just learned to cope.

When I was 17, my father passed away from a heart attack.  It was so strange-- I kept thinking that if my father hadn't remarried, we would be orphans. I seriously don't know what we would have done without my mom.   I kept worrying about the funeral.  Everybody stands and talks, but I knew that I couldn't do that.  I kept thinking that everyone would think that I was rude and didn't care because I was sitting and not making an effort to greet people. That still kind of bothers me.  Well, life goes on. 
When I was 19, I met my future husband.  We were together for 4 years before we got married.  I always felt like I was lazy.  I never liked to cook because it took too much energy.  I would clean, but I became exhausted easily.  I was getting one bladder infection after another.  The doctors just kept prescribing medicine.  They did send me to a urologist to dilate the urethra; that didn't last too long.  So life went on.  We got married in 1985 and soon after, we had our first daughter.  My husband was finishing up graduate school, and I was working in accounting at a mortgage bank.  There were no problems with the pregnancy, and Stacey was perfect. 
My husband graduated in 1986, and we moved to San Antonio.  Our second daughter was born there.  Again, the pregnancy went well.  After Shannon was born, I began having major problems with diarrhea.  That only lasted for a few months, but minor symptoms have been present since.  We noticed that Shannon didn't seem to progress as well as Stacey.  Because of “mother's intuition,” I never gave up with the doctors.  When she was in 5th grade, she was formally diagnosed with a non-verbal learning disorder with neurological and cognitive deficits.  Thank God that she had been in special education since age 3.  Anyhow, in 1988 we moved to Vermont since my husband had gotten a job with IBM.  I was a stay at home mom and advocate for Shannon. 
In 1990, our son was born.  My husband cried.  He was a great dad.  When not at work, he was always with the kids-- a big kid himself.  A lot of times, he would come home from work and take the kids out to do random things.  I would stay home on the couch, too exhausted to move.  That still bothers me to this day.  I (we) missed out on so much because of me.
Our son Tim also had special needs but not as much as Shannon.  I still, to this day, advocate for him.  We, my husband and I, could deal with anything that life threw at us.  We were a great team.  In March of 2000, out of the blue, my husband had a seizure.  That night, he was diagnosed with a brain tumor.  Boy, talk about life changing.  We went to Boston for surgery.  They removed 98% of the tumor.  It left him temporarily paralyzed on his right side.  We brought him back to Burlington for a month in rehab.  During this time, I was diagnosed with hypothyroidism.   My husband passed away in July of 2000. 
In October of 2000, I moved the family back to Rochester to be near family, friends, and my husband, whom I had buried there.  My health was the same; I had near fainting, constipation, bladder infections, exhaustion, but life goes on.  I met Andy in late 2001.  Our relationship grew, and he moved in with the kids and me.  In February of 2005, I had the worst headache of my life.  I went to the emergency room and had a CT scan and spinal tap.  Both tests were normal.  Thank God I had no tumor; that's all I could think.  Well, the headache still hasn't gone away.  For the past 2 1/2 years, I've been to all types of doctors.  First, they told me it was stress, then a possible spinal fluid leak.  I was sent to a neuro-ophthalmologist at the University of Rochester.  She put me in the hospital to try to break the cycle of headaches.  It didn't work.  But, they did notice that I was having problems with my blood pressure.  It was very low, especially in the am.  I was referred to a cardiologist for further testing.  They did testing in the office which showed that I had orthostatic hypotension.  After that, I had a tilt table test.  Well, I failed that big time. As I did research online, I started to get the idea that all of the health problems I'd been dealing with might have a collective name. 
I continued to tell the doctors that I had trouble standing for any period of time, numbness and tingling in my head, along with the pain.  When I walked to the fridge, I’d be out of breath and sweating like a pig.  I also had many other symptoms.  This headache was ruining my life.  My husband was doing research for me and found POTS.  I laughed at him, but as time went on and I did more research, WOW, it answered so many questions.  It helped me see why I always felt like I was lazy and why some days I couldn’t even get out of my chair.  I'm not insane.
We talked to my doctor who agreed that it was POTS and referred me to an autonomic specialist.  Now the problem is that this specialist has old, broken equipment and is waiting for parts.  Figures, huh?  So for now, I am taking Celexa, Synthroid, Dexedrine, Vicodin, Compazine, Dilaudid and Restoril. I still have my daily headaches, some much worse than others.  Some days are good, but I have continual nausea, numbness and tingling in the head, definite brain fog, problems with coordination, and constipation.  I guess I just need to wait for the specialist to fix his equipment.  At least there is a name for this condition.  At least I'm not insane.  At least I have a loving and caring husband and kids to help me.  And life goes on.


Candace’s Story

By edriscoll, in Member Stories,

By Candace
August 2007
My name is Candace. I am 18 years old and was diagnosed with POTS/autonomic dysfunction in November of 2006 at the Mayo Clinic in Rochester, Minnesota.  I hope my story can encourage someone.
I was born on March 9, 1989, along with my twin sister Cassie. We were 10 weeks early and my lungs weren’t fully developed, so I was hospitalized until I was healthy enough to go home and be with my sister. I was generally a healthy child growing up. Around the age of 12, I was diagnosed with severe asthma and was put on medication. My asthma was controlled, and things went smoothly as I entered high school. During my fist year of high school, I was involved in many sports. I was in cheerleading, basketball, volleyball, softball and track. I excelled in sports and academics. I particularly excelled in track, going to the state finals as a freshman in three of my four events. I still can’t believe how much energy I always had. I had two sports practices, homework every night, not to mention games and meets.

Starting in my sophomore year of high school, I decided cheerleading wasn’t for me. I was moved up to the varsity basketball team and was the main hitter on the junior varsity volleyball team. When track started, I was looking forward to another successful season.

About a week after my 16th birthday, I was put on Protonix for my acid reflux. After I was on this medication for about a week, I went into anaphylactic shock and was hospitalized in ICU for 3 days.  This was the time when I believe that I developed POTS/autonomic dysfunction.           
I never fully recovered after my anaphylaxis. My performance in track went downhill and so did my health. Near the end of my track season, during one of my meets, I suffered from a severe asthma attack and had to be taken by ambulance to a nearby hospital. This set me back even further.
Throughout the summer and beginning of my junior year in high school, I was unable to eat like I had previously. Before I got sick, I was a bottomless pit. I was always fit and had never had any problems with my weight. I have always been generally skinny. But as the year went on, I developed chronic nausea and lost my appetite. I didn’t feel well enough to participate in the sports I loved, and so I was unable to play basketball and volleyball. I didn’t understand why I felt sick all the time. Many of my friends and coaches looked down on me for not participating in sports. No one could figure out why I wasn’t the “full-of-energy, athletic girl” I used to be.
Sometime in October, my symptoms started to get worse. The nausea was unbearable. I lost 20 pounds in about two weeks. By this time, I had been to the doctor countless times with no answers. I was then sent to a gastroenterologist who ordered some tests.  When no answers were found, he told me he thought that I had an eating disorder, such as anorexia nervosa, and that all my symptoms were “in my head.” 
My family doctor continued to look for answers. I was sent to every specialist and had every possible test done. Every time I waited for test results, I would pray that they would bring back answers to why I was sick. But every test came back the same; everything was normal, and I still had no answers. 
After so many tests came back with no answers and everyone telling me that it was “in my head,” I got pretty depressed. I felt like I was going crazy. I didn’t understand how I could barely make it through a normal school day, get home, collapse on my bed, and have it all be “in my head.”
After I had been to every specialist and had every test done that the doctors could think of, they started to look for ways to treat my symptoms, since the underlying cause couldn’t be found. I was started on an anti-nausea medication, and I soon started to feel better. By this time, track was starting, and I decided to give it a try. The season started out slow because I was very weak and couldn’t do much, but by the time the regional competition came around, I was ready for it. I had been praying all week that God would let me perform to the best of my ability in all my events.
On my first jump in long jump, I qualified for the state finals. On my second jump, I broke the school record. I ended up taking first place in the long jump and also went to state in the 800 and 400 relays. Both of my relay teams ended up taking 2nd place at the state finals, and we took the all-state title. It’s amazing what God can do with our lives when we least expect it.
After being on the anti-nausea medication for about two months, it stopped working. I was put on another medication, but it didn’t work either. After dealing with chronic symptoms for so long, I started to get used to them. Being nauseated, dizzy, and exhausted every day became “normal.”  During the summer, I got a job at a nearby Bible camp. For this job, I was required to live at the camp. I worked in the kitchen, and I absolutely loved it.

The summer was going great, my symptoms stayed the same, and I learned to live with them. After a month and a half, I started to develop new symptoms. I started to have chest pain, severe nausea, dizziness and weakness. After a Saturday cookout, I was feeling unusually sick and decided to go see the camp medical officer, who was an experienced paramedic. He knew of my medical history and of my symptoms. He decided to check my blood pressure and found that it was extremely high. I was then taken to the local hospital ER where they did some tests, and again, everything came back normal. I was sent back to camp with no answers.
Over the next three days, I grew increasingly worse. I was barely able to walk, could hardly eat, and started to have blurry vision with my high blood pressure. I also developed jaundice. On Wednesday, the camp medical officer sent me to the hospital where he worked. From there, the hospital’s medical director sent me to DeVos Children’s Hospital, where I was hospitalized for 8 days. This was a very scary time for me. The doctors thought that maybe I had a brain tumor and ran tests to look for one. I had many more tests done, all with no answers.
After I was discharged from the hospital, I was sent back to see my family doctor, who in turn sent me to see a cardiologist for my high blood pressure. The cardiologist put me on a beta blocker, which helped with my fast heart rate and high blood pressure. He continued to look for the underlying cause but found nothing. In November 2006, during my senior year in high school, he referred me to a pediatric nephrologist at the Mayo Clinic in Rochester, Minnesota.
On November 19th, my mom, my grandma, and I set out from our home in northern Michigan to make the long drive to Rochester, Minnesota in hopes of finding some answers. I was excited that I might finally get some answers, but after so many tests and doctor visits with no solutions, I was very doubtful.
At the end of my first week at Mayo, I was diagnosed with autonomic dysfunction and POTS. I was also diagnosed with Gilbert’s disease, which explained the jaundice. The doctors told me that, in fact, I wasn’t crazy, and that it wasn’t all “in my head.”  I can’t explain how relieved I was. It was hard realizing that they couldn’t cure me, but just knowing that I did have a known medical condition and that it was treatable was a huge weight lifted off my shoulders.            
One huge blessing for me was that during the summer, when I was hospitalized, I had been planning to go on a mission trip to El Salvador with a group of staff members from the camp. Once I found out that I was going to Mayo, I was concerned that my appointments might be scheduled during or close to the time that I was planning on being in El Salvador.  (Once you are referred to a doctor at the Mayo Clinic, it usually takes a while to get appointments scheduled.) But God had big plans for me. Once I found out that I was going to the Mayo Clinic, it only took a week for them to fit me in for appointments.  After I got back from Mayo, I had about three weeks until I was planning on flying to El Salvador. During these three weeks, I worked on my treatment plan and ended up being well enough to fly to El Salvador for 11 days.
When I was in El Salvador, I did get pretty sick due to dehydration (which for people with autonomic dysfunction and POTS is about the worse state you can be in), but God was still taking care of me. One of the staff members that went on the trip was the camp medical officer, and he was able to give me some IV fluid. Overall, the trip was amazing, and I will never forget it.
At this point, I am a high school graduate and working again at the same Bible camp. I am still pretty sick, but I know God will give me the strength to get better through my treatment plan. I believe that God uses trials in our lives to help us grow in our faith and to make us stronger people. I also believe that God allowed me to go through everything that I went through so that I can use my experience to help other people. In a couple months, I will be starting my paramedic training. I now will have a better understanding of my future patients.
I want to encourage everyone to never give up hope and to always trust God, no matter how dark the future may seem.
*“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:11*

By Peter Maerkel
July 2007
Hello, my name is Peter Maerkel.  I am 40 years old at the time of this writing.  I have POTS.  I was diagnosed October 20, 2006 at St. Francis Hospital in Hartford, CT.  This is my story.
I have been overweight all my life, starting shortly after puberty.  I am 6’5” tall, and in August 2005 I weighed 412 lbs.  I was out of work from my lucrative job at Kaman Aerospace as an NDT inspector.  (I did x-ray and ultrasound on aerospace components.)  I was on Social Security Disability for two herniated discs in my back.  I had terrible sleep apnea (93 episodes in an hour during my sleep study).  I was also pre-diabetic and had been told my knees would need to be replaced sooner than normal due to my weight.  Yes, I had tried every diet known to man.  Nothing worked.  So, I started down the road to a gastric bypass.
I remember my weight in August 2005 because that was when I signed the documents to start the gastric bypass process, and they needed my exact weight.  Well, on December 29, 2005 I went under the knife.  The surgery went extremely well.  There were some minor issues, but nothing to worry about-- so I was told.  You see, I had done a ton of research online and asked a bunch of (what I thought were) well informed questions.  Even my surgeon was impressed and told a medical student, “This is the type of patient you want-- one that is well-informed.”  I did not go into this blindly.  I had many discussions with my PCP (at the time), and he told me, “If I were sitting where you are, I would have the surgery.”  He told me, “If you can get over the risks – death being the big one, it will be OK.”  This was partly true, partly not, as I now know.  You see, in all the research I had done, I had never once read (or heard) about getting potential nerve damage or POTS from losing weight so fast.  Now I know.

After the surgery, the weight started flying off.  I was offered a full-time sales job by my brother-in-law.  I jumped at the chance.  My back was doing great because I had lost about 90-100 lbs already (which put me at around 300 lbs).  During this time, my regular post-op follow-up blood work started showing some vitamin & blood deficiencies.  I won’t bore you with the details, but I was growing concerned.  My wife, who was finishing her second year of nursing school at the time, was concerned too.  I brought these concerns to my doctor and was told that I had nothing to worry about.  I had adjusted my vitamin intake per the dietitian’s instructions and had gotten the OK from my doctor that all was well.  So, I went off into my new career.
In late May, just about a month after I had returned home from sales school in Atlanta, GA, I heard my daughter fall from her top bunk and hit the floor hard (big girls don’t need the bar to hold them in).  Well, after getting in there and finding her sobbing, I stood up and felt very faint.  I reached for the bar I had reinstalled but didn’t make it.  I don’t even remember hitting the floor.  The next thing I remember, I woke up to my oldest daughter screaming at the top of her lungs, “Daddy! Daddy!”  Apparently, I had been unconscious about 30-45 seconds and unresponsive with my eyes wide open.  When I got to my feet, I told my wife and the paramedics that I felt OK.  I was not going to the hospital for fainting.  No way!  They told me that they had to report this to my PCP and that I should follow up with him as soon as possible.  I did.
When I saw my PCP, he ordered a Holter monitor for me.  The test results took a while to come back, and I was told that it was basically normal.  As I later discovered, this was not exactly true.  The averages were normal but there were many abnormalities in it.  During the month that I waited for the report to come back, I had several near syncopal episodes which I discussed with my PCP.  I was told at the time, “When you feel lightheaded or dizzy, put your head below your heart.”  Yeah, I thought, like you can live like that. 
Well, that is what I did.  I followed my doctor’s instructions and proceeded to get on with my life and great new career.  The money was great, and I was on track to be one of the top new salespeople in the entire company (part of a multi-billion dollar company).  I was living the American dream-- notice the past tense.  By the end of September, life as I knew it was over. 
I had gotten down to 226 lbs by early September 2006.  I had lost a total of 186 lbs since August 2005.  I was virtually half the man I had been.  I had some problems with vomiting.  I was sent to see a GI doctor at St. Francis in late August, and they found my pouch had some scar tissue that they just expanded with some balloon-like devices.  By Labor Day I had a new (new to me) truck, and I thought life was great.  There was no more hand-to-mouth existence on SSDI.  I had satellite TV and was working my butt off, literally!  So, as a new person, I did some things I had not dreamed I would ever do again. Now I could go to the fair and ride on rides, like I did in my youth. This time I did it with my children.  I felt great, at least for a while.
The first ride was not too bad; the second and last rides did me in.  When I got off of one ride (that flips you around head over heels) I felt sick.  I thought this was natural.  I told myself that what I was feeling was totally normal.  It wasn’t.  I had the effects for about five hours after the ride. 
By mid-September I was in an inpatient psyche ward at my local hospital for anxiety and suicidal thoughts.  It was during that first ER visit and subsequent inpatient stay that doctors started to notice rapid BP and HR changes when I stood up.  I was discharged and thought the worst was over.  Boy, was I wrong.  It was just the beginning of my troubles.
I went back to the ER about one week later for chest pressure/pain and head rushes.  It felt like blood was just pulsing through my head!  I was really in bad shape.  My PCP told me that they might have to put in a pacemaker because my HR was so low.  It had gotten down to 32 beats per minute.  I was throwing PVCs all over, and at one point they thought I had heart block too.  The decision was made to implant the pacemaker and “fix the pump.” 
The arterial lead moved after the first surgery, so I had to go back for a second surgery to fix it.  After about three days in the ICU they were going to send me home, but they were still concerned about the massive BP drops I had when I stood up.  I believe my blood pressure got down into the 70/30 range at one point, so they gave me fluids to see if that would help.  They gave me 1000 cc of saline and had me stand up.  That was a big mistake.  My face, as I was told, went white as a sheet. 
I went to another hospital to see if they could figure out what was wrong with me.  The hospital I went to was the same one that had performed the gastric bypass – St. Francis.
I stayed there about three days and had many tests done.  Their conclusion: I was starving to death due to the gastric bypass.  Of course, since they were doctors, they called it “nutritional deficiency.”  They ordered me to see their in-house dietitian and work up a meal plan that included 100 grams of protein per day.  I was out of the hospital in less than a week.
Dizziness, lightheadedness, chest pressure/pain, and wild BP changes sent me back to the ER again.  I was really stumping the local doctors.  It would almost have been funny if I had not been so sick.  During my second day in the ICU, I had a non-sustained VT run of about 37 beats.  The VT triggered another trip to St. Francis for a heart catheterization to check for blockages.  No blockages were found.  However, this time I had a different cardiologist than I had on my first trip.  Aside from the doctor who said I was starving to death, a whole team was on my case for awhile. I was starving, but the starvation was only part of the problem.
My new cardiologist was really on the ball and pieced together what he thought was wrong with me.  He ordered a HUT (Head Up Tilt) test for me.  This was one test for which I did not want to have a positive result.  Of course, I did.  “It is positive for POTS.” my doctor said.  My next question was one that many have asked: “What is POTS?”  For the next half an hour, I found out that this little acronym would consume my life for the next few months.  October 20, 2006 was a day that changed my life.
From the day this all started, I have seen approximately 15 doctors in two different states.  The reason for that is quite simple: insurance companies can be a great help but can really hamper care if you have to be “in network” for coverage.  Don’t get me wrong, I am extremely grateful to have insurance.  It just hurts that you have to fight to get covered when you should not have to. 
At this moment, I am awaiting a report from my team of neurologists from University of Massachusetts Hospital in Worcester, MA.  They are trying to determine if there are any other tests that need to be run or therapies to try.  I was on two different drugs that did some good but had side effects that were not good for me at all.  I also tried the compression stockings too.  Let me tell you, as a man, putting on pantyhose is pretty weird, to say the least!  I tell my friends that I am one of the few men you will ever meet who has worn a feminine napkin (as a wound dressing for groin lymph node removal in 2000) and pantyhose.  I am getting stronger.  However, I can echo the words of the founder of DINET, Michelle Sawicki: “I am not the same as I used to be.”  Not by a long shot.  I have no real stamina.  I still get lightheaded.  I get symptoms such as dizziness, chest pain, BP changes, tachycardia, bradycardia, neuropathy in my hands and feet, blood pooling (my hands are freezing typing this), headaches (not as bad now), sleep problems, and other symptoms too.  And that is on a good day.  I am walking and doing most of the housework now.  That is a far cry from what I could do just three months ago!
The real downside to this is my family’s suffering and my shaken faith.  This has really shaken my faith in Christ.  It has not destroyed it, and I am doing better now.  But it has been a long haul, with more to go.  My family has really suffered.  My dad has been helping us with money to keep our house.  Believe me--that is humbling and humiliating at the same time.  
I have had to fight about three or four insurance issues.  These issues range from disability insurance for my truck, which I lost and had to give back to LTD (more humiliation), and LTD, which I lost too.  I am still fighting to get back on SSDI, which I was told would be no problem because they never declared me “not disabled.”  I was just working while I had it.  I have gotten some money from them for the past two months.  However, I stopped working in October 2006 and did not get any money from them until early April 2007.  Then they wanted it back.  Someone had coded me “in prison.”  Again, it would almost be funny if it wasn’t so sad and I was not so ill.  I now have my congressman’s office working on it too.  Hopefully I will have an answer about it today. Further, I have had to ask for food stamps and heating assistance this year too.  More humiliation!
What really hurts is that my wife and I have grown apart, and I can’t play with my children like I used too.  Before this happened I was a blue belt in karate.  I had a new job and a new (to me) truck.  I thought I was moving on to a new me.  Well, that part is true.  I have a new me---but I want a trade-in!

By Karen Brank, Toledo, Ohio
July 2007
Hello! I am a 37-year-old African American female who was diagnosed with POTS in July of 2005.
In 1997 I began having health problems. I was also under a tremendous amount of stress in my job at a mental health agency, a single mother, and in graduate school. My job was so demanding. I had to work 12-16 hour days to get everything done. Soon after my health problems began, my supervisor moved to a different department. I got a new supervisor, and she was not supportive.  She allowed a new co-worker to be verbally abusive and rude to me and never did anything about it, even though I tried to do things to help resolve the matter. I began to have heart palpitations, chest pain, muscle pain, low energy, dental problems (swollen gums, constant bleeding, and pain), headaches, urinary tract infections (blood in urine), as well as insomnia. I did try to exercise 3-5 times per week but noticed that I could not do it due to lack of energy and neck pain. I felt as if I had pulled a muscle in my neck.
In 1999, I transferred to a different department at work, but I still experienced stress from management. From my experience in the mental health profession, most of my supervisors were culturally insensitive and held a superior attitude. My migraines became worse; I also suffered dizziness, very low energy and fatigue. My doctor informed me that I had tested positive for Epstein - Barr virus. I was placed on lorazepam to help with sleep. I had previously felt wired but extremely tired because I could not sleep.  I had some nausea almost daily. I was a size six, and I began gaining weight; by the end of the year I wore a size 14. I was taken off work for 30 days. In that time I was able to find another job.

The new job was in a faith-based organization. Unfortunately, I had to take a $5,000 pay cut. During my time at this organization I was very ill.  However, I did not have to work long hours and the work was very light and not stressful. I still was fatigued, had low energy and continued to have problems with my gums and teeth.  (I was diagnosed by my dentist as having the early stages of gum disease.)  I also had headaches, muscle aches and chronic urinary tract infections that led to some kidney infections.  I finally just stopped going to the doctor because I felt he was not helping me and not returning calls when I needed appointments.
I graduated and received my master’s degree two months after I began working at this organization, but my pay rate did not increase. I was very disappointed. I began looking for another job due to financial reasons.
I found a job at another mental health agency. I got a $7,000 pay increase, but the stress, verbal abuse, and discrimination began again.  Once more I began working long hours to get all my work done. I started to suffer different symptoms this time. I was fatigued and lightheaded with dizziness, almost to the verge of collapse.  I had high blood pressure (i.e. 140/100), back pain, and swollen feet (with pain).  I was unable to eat due to nausea, vomiting, heartburn, gas, bloating, and loose stools. This caused my weight to fluctuate. I felt thirsty and had a dry mouth. I was also unable to sleep (along with feeling wired).
I was able to transfer to another job within the same agency. This time I got an excellent supervisor, but I still had to work long hours to get everything done. With this job I had to go into clients’ homes. I noticed that I developed a persistent cough (when going into certain homes), eye allergies, and chronic sinus infections. In 2004 I lost weight, maybe ten pounds at first, and experienced persistent vomiting. I started to lose weight very rapidly. I went from a size 14 to a size 8.
In 2004 I got a new doctor due to insurance changes. It was a blessing in disguise. I was diagnosed with fibromyalgia. I was given an MRI that found degenerative disc disease. I also began losing my balance and falling, but it was not happening very often. I just thought I had tripped over something.
In 2005 I got married. My new husband took me to Baton Rouge, Louisiana to meet his mother. Unfortunately, during the trip I developed food poisoning after eating at a restaurant. I felt nauseated for almost two days, had some loose stool (lost control of my bowels one time), felt very weak, fatigued, and had trouble walking (along with balance).
When we returned from Louisiana I knew something was wrong with me. I could barely walk; I kept falling down.  I had pain everywhere and extreme weakness all over my body. One night, I came home from work and I fell down three times. My husband took me to the hospital and I was admitted.
After I was released, I was falling down five or six times per day. I needed assistance walking and needed to use a wheelchair. A few days later my doctor diagnosed me with POTS. He sent me to a cardiologist, Dr. Blair Grubb, to confirm the diagnosis. Dr. Grubb said that I was suffering from muscle wasting, orthostatic hypotension, and dysfunction of the autonomic nervous system.  I had a positive tilt table test. He believed my case of POTS was due to another underlying medical condition because POTS is extremely rare in African Americans. He thought that I had a metabolic disorder called mitochondrial cytopathy, but I tested negative at the Cleveland Clinic.
I was seen by several specialists at Cleveland Clinic. I have been diagnosed with IBS, migraines, sleep apnea, asthma, and allergies. I also have peripheral neuropathy. My face, hands, and feet feel as if they are burning and throbbing.  I get temporary paralysis. I also get stabbing, shooting, and aching pain. This is very debilitating. I have trouble walking, climbing stairs, or lifting anything more than 5 pounds. I also feel disconnected from my family and friends because I feel like a prisoner in my own body.
I also had to have a hysterectomy because I had two fibroids as big as grapefruits and one large cyst. I was in constant pain for months until a Cleveland Clinic OB/GYN took away the misery and pain. I did end up in intensive care after my surgery because I went into respiratory distress. I had asthma and did not know it at the time.
My husband and I divorced a year ago. He was never supportive of my illness. He was also angry all the time as well as physically and verbally abusive.
I have not worked in almost two years. I suffer from severe dizziness that makes it impossible to stand up, and nerve pain along with IBS. I have constant vomiting, and I could have gallbladder disease. I may have to have another surgery. I am currently working with a vocational rehabilitation counselor to return to work.

by Lisa
January 2006
Before this experience I had a different perception of doctors; I never doubted them.  I was lucky to have only my regular checkups, and for my few, small medical issues, the doctors were always able to come up with an answer to fix the problem.  I had only dealt with doctors over simple matters, but had witnessed family and friends deal with them for a variety of medical conditions.  Occasionally it took a lot of testing and some time to get to the diagnosis, but the doctors always came up with a treatment plan, whether it was surgery, medication, or some lifelong management of a condition.  But now I have been exposed to a whole new side of the medical field.  I never imagined I would run into the situation where I would present my symptoms to the doctor, have numerous tests come back abnormal, and then they would say “I don’t know what’s going on.” 
I found myself frustrated back then, and now, more than two years later, my frustration has reached an all time high.  I now have experience dealing with many healthcare facilities and doctors.  I’ve had some great experiences and some horrible ones at most of the facilities I have visited. 
Medicine, as I’m constantly told, is not an exact science, and therefore doctors do not have an easy job.  They have worked very hard for their credentials and for their positions.  Not all medical cases are by the book, and a good doctor has the ability to think outside of the box.  Many doctors are inclined to be analytical rather than creative, imaginative, and sympathetic.  Doctors encounter different issues everyday in their line of work, and people’s lives are in their hands.  Doctors’ jobs involve a lot of problem solving; most patients don’t have all the textbook symptoms. (I wish I had a more textbook case.)  Some go by the books, but I’ve learned that cases aren’t always that simple. 

When a doctor is going over test results with me, they almost seem disappointed when, for instance, a brain MRI comes back abnormal with unspecific findings.  It’s as if it would be easier to have something easily identifiable, such as a brain tumor.  It’s so hard when doctors keep finding things wrong and discovering all these abnormal tests results, but cannot give me an official diagnosis.
I keep getting diagnosed with various conditions.  Almost every part of my body is affected, but all of the findings turn out to be “non specific.”  I still feel so helpless because I need my doctors’ help determining the underlying cause.  Doctors are having a difficult time putting together the various puzzle pieces of my symptoms and abnormal tests.  I keep being told that my condition is rare.  Doctors are decision makers; although, in my experience, they do not always agree with one another.  Some doctors have very conflicting views.  Since I’ve been diagnosed and undiagnosed with certain conditions, I am learning that very little is conclusive in the field of neurology.
I’ve been told the worst news by some doctors.  They say that I may never get better and I’ll just have to learn how to live with my symptoms.  Other doctors tell me to look on the positive side of things.  They say that they are not giving up on me, though I am not their typical case.  I have not responded well to any treatments, and no symptomatic relief has done much for me yet. 
More has to be done, and I’m not one to give up.  Everyone must be a leader for his or her own care; you cannot sit back and wait for things to happen or you will be forgotten in the healthcare system.  After all, you are the most important member of your healthcare team. 
Research is being conducted for many of these neurological conditions, and the doctors say they are learning about some of these disorders right along with me.  The doctors tell me how frustrated they are in what they don’t know about these conditions, but at least they can go home at the end of the day and function.   Doctors, as leaders, should use the resources at their disposal to help patients.  They should not give up on their patients and tell them that they may have to wait until they get a lot worse to find out what’s happening.
The autonomic nervous system affects basic bodily functions vital for living, and therefore, disease of this system interrupts many facets of how the body works.  I have seen numerous doctors in many different specialties, and I know that I am a complicated case.  It is hard to get someone to look at the whole picture.  Doctors seem to only care about the abnormalities in their own specialty, but my varied, seemingly unconnected symptoms may be related.  What can I do?   There is only so far I can get without these doctors, and all I want is to be able to function again in some capacity.  I feel like so much of my time is spent waiting for test results or for the next appointment.
Many doctors seem to be so wrapped up in their research, or another aspect of their job, that they seem to have forgotten why they went into medicine in the first place.  In a perfect world, doctors would work together and the patients would be the most important thing, but in many instances that is not the case.  Doctors seem to want simple cases and do not want to spend the extra time investigating mysterious cases.  They just pass those off to somebody else.  A good doctor is aware of their strengths and weaknesses; they may not always have answers or solutions, but should try to use the resources at their disposal to get them.  Doctors have the power to change things.  They have the ability to accomplish so much.
Before all of this, “dysautonomia” was never a word in my vocabulary, but it is a word I now use regularly.
The latest condition I have learned about is mitochondrial disease.  The abnormal muscle biopsy I had indicates that I could have this condition, which can vary in type and severity.  This is a group of neuromuscular diseases that are usually genetic and most often affect children.  There is no cure for mitochondrial disease.  At first, I thought it was a definitive diagnosis, and I was prepared to move forward with this.  I have now learned that although I have a mitochondrial dysfunction, which will never go away, this may not be my definitive answer.  Even if I do have one of these neuromuscular diseases, the doctors have absolutely no idea which one, and there would be nothing they could do for me anyway.
I feel as if I have an invisible illness at times.  When people see me, I often don’t look sick, but people don’t know what is going on inside of me.  I have so many pieces of different diseases, and it would be bizarre if they weren’t all connected somehow.  I never thought with today’s medical technology that it would take so long for me to be diagnosed and treated.  I’m still hoping that day will come soon.
People don’t understand what it is like for me to live day by day.  I even forget what it is like to feel healthy.  I haven’t felt right since Thanksgiving Day, 2004 when this all suddenly began. When I woke up that day I felt fine, but I became sick later that morning.   I thought it was just the flu, but then it never went away. 
Among all the other symptoms I experience, the dizziness and nausea are by far the worst.  I am dizzy and nauseous, to some extent, every minute of every day.  There are times when these symptoms are better than others, but my symptoms are unpredictable, which is one of the most frustrating issues.  I never know when I’m going to faint or when I’ll have to use that plastic bag that I always have with me in case I need to vomit.  My other symptoms (like abdominal pain and headaches) are a nuisance, but they are not the ones that keep me from functioning.  I experience numbness, tingling, and some loss of feeling of certain body parts.  I also cope with painful burning sensations in my hands and feet as well as poor hearing at times.  I’m sensitive to light and always feel dehydrated.  I deal with tachycardia and can’t even shower without feeling faint or the fear of burning myself because my temperature perception is disrupted.  The worst problem, by far, is the unpredictability.  If my symptoms weren’t so unpredictable I could possibly hold down a job, but even when I am able to accomplish things, I can never do anything for too long before my symptoms become unbearable. 
My life may never be the way it was as I knew it.  I can handle that, but there has to be something out there that will get me functioning again.  I want to resume my life, even if it’s not the way I was living before this illness.  I just want to resume some sense of normalcy.
There were so many things I took for granted.  People often do not understand how my body cannot do the things most people’s bodies do subconsciously.  Then again, I also do not understand how one day my body suddenly decided to stop compensating for gravity after I had happily lived with it for so many years.  At times I feel helpless.  I’ve always been an independent person, and now I find myself relying on others for basic tasks.  I cannot drive.  I’m constantly dizzy and getting sick.  I have trouble reading, filling out forms at doctors’ offices, and even emailing takes a lot out of me.  Sometimes walking is hard, but there are other moments when I cannot even stand without fainting.  It’s hard to sit back and wait like doctors recommend, often giving me no choice in the matter.  I constantly find myself, despite the advice of my doctors, pushing to do more, even though it makes me sicker.   I’m sure that they couldn’t just sit still and wait on others to determine their quality of life.
You learn a lot about yourself and others through an experience like this.  I have had a lot of time to step back and reflect on things, to re-evaluate my life, and to change how I want to live it.  I have been exposed to a whole new world and feel that this experience will make me a better leader in the future.  I just wish so much suffering didn’t have to be involved.  Sometimes it’s hard to remember the rest of the world has continued moving while my world has stopped.  Day by day, nothing seemed to change, but then I noticed everything was different.  The future is always uncertain in this unpredictable world. 
Through this experience, I’ve never felt so motivated, yet so physically unable to do things.  I have a better idea of some things I want to accomplish, though.  I hope that in the near future I will be able to put all this energy to good use, once my health has improved.  I would like to help those people out there who find diagnosis a mystery.  I don’t want anyone to go through what I’m going through.  It’s hard to have a rare disorder with which people are not familiar.   
“Everything is okay in the end; if it’s not okay, it’s not the end.”- Anonymous.  I guess I will have to let life turn its own pages, because right now the end of this book is unwritten...


Karyn's story

By edriscoll, in Member Stories,

By Karyn
October 2004

I define myself as a mother of two, a wife, and a neurologist, in that order. POTS has affected all of these roles. I was diagnosed with severe POTS by Dr. Low at the Mayo clinic a few years ago, but significant symptoms started in 1996 during my first pregnancy. I was on bed rest for two months and could not stand up long enough to brush my teeth or shower. I saw two cardiologists who said it was "just pregnancy." Even though I am a neurologist, at that time I knew nothing about neurocardiogenic syncope or POTS. I was never taught a thing about them during my training. I received an epidural for delivery, and my blood pressure bottomed out. I needed a C-section due to failure to progress. Thank God I made it through delivery, and I had a healthy baby girl. After delivery, my symptoms eventually resolved after about 3 months.

When my husband and I were trying to decide whether or not to have another child, I saw a cardiologist (electrophysiologist). He diagnosed me with neurocardiogenic syncope. In retrospect, I really have POTS, but he was close enough. My husband and I felt better about a second pregnancy knowing that I finally had a diagnosis and knew how to treat it if necessary. The second pregnancy was a million times worse than the first. I was on bed rest for 2 1/2 months and required a maximized dose of a beta blocker, compression stockings, salt, and lots of water just to get out of bed to use the bathroom. I was told by my OB, anesthesiologist, and cardiologist that I would need another C-section because pushing during labor would cause syncope. I am sure they were correct. I have never even been able to blow up a balloon without near syncope. I found one anesthesiologist in the entire city who would try an epidural for the C-section instead of general anesthesia. My blood pressure could have bottomed out with general as well as an epidural. He loaded me with more than one liter of saline and albumin which allowed a safe epidural. I was blessed with a healthy baby boy.

I was not so lucky with POTS after the second delivery. The symptoms have never gone away. The false hope of having the symptoms vanish again was crushing during the first year. My symptoms are the usual for POTS: dizziness, fatigue, brain fog, shakiness. When I type the symptoms, they sound so lame, but they have impacted my life tremendously. I also have weekly migraines and, most recently, neuropathy (extremity numbness, tingling, burning). I take huge doses of a beta blocker, midodrine, mestinon, as well as salt tablets, lots of water, and compression stockings. My menses are suppressed too. Despite the above, I still have frequent daily symptoms and need to use a motorized scooter to avoid syncope triggered by prolonged standing or walking. At least I don't pass out, thanks to the above.

Besides the symptoms themselves, my career and family have been affected by the illness. At least two out of four of my neurology partners were cruel and mocking of my illness. One of them used to roll his eyes when I would lie down between seeing patients. I was no longer able to take call, which involves working for 36 hours or an entire weekend at a time. My pager would go off in the middle of the night, and I used to pray that I would not have to drive into the hospital. My partners really did not care WHY I could not take call. They just wanted to get rid of me. A lawyer told me that I could have filed a discrimination suit against them, but I did not want to waste my energy. I found another job as a neurologist and now work part time without call.

The hardest thing for me has been learning that I cannot cure myself by "willing it" with my mind. Before this illness, I thought I could do anything with hard work and determination. I can help the illness with positive attitude, but I cannot get rid of the illness. I also find it hard to limit myself. I have overextended myself on many occasions, usually around holidays, and paid the price. I look around at other kids and see parents who are involved in a lot of their activities. My husband has type I diabetes, so it is hard for both of us to be active.

When my daughter was younger, I told her I was sick one day. She said, "Mommy, you are NOT sick. You are not coughing or sneezing." She understands better now at age 9. Similarly, adults look at me and have no idea that I could have a health problem because I look young and healthy. I am 40 years old but have been told that I look like I am in my 20's. When I use a handicapped spot or a scooter at stores, people stare at me, trying to figure out what is wrong with me, or whether I am abusing these aides.

I have learned some life lessons as a result of the illness. I like to think that good things can come from bad things.

1) I am more patient and empathetic with my patients. I truly understand what it means to be ill. At times, I have felt more kinship with my patients than with my physician colleagues. When my partners at my previous job were being so cold, my patients were giving me hugs and kisses and crying for me!

2) I pick and choose what I will get upset about. Getting angry or crying flairs my POTS symptoms.

3) Not everyone cares or has capacity for compassion. I try not to take it personally. It is THEIR flaw. I try to forgive and go on. Anger towards them gives THEM my power.

4) There are some wonderful, wise people out there.

5) I count my blessings and am grateful for what I do have. I am most grateful for two healthy, delightful children, despite the pregnancy-triggered POTS.


POTS Recovery

By edriscoll, in Member Stories,

By Kerk
August 2006
I’m writing this to provide some hope to POTS sufferers; POTS can be overcome.  Complete recovery and resumption of all pre-POTS activities is possible. It may take a while, and it’s not fun, but you can come back strong.  I had POTS several years ago and recall how all the internet info I found was demoralizing; all accounts ended with ineffectual medications, patronizing doctors, and borderline functionality.  So here is a long, gloomy POTS story with a happy ending.
In March of 2000, at the age of 29, I caught a “cold” and experienced some chest congestion.  Shortly thereafter, while in Costa Rica, I became aware of frequent heart palpitations. Over the next month, I saw numerous doctors who all concluded that I had a benign ventricular arrhythmia.  I took the entire array of diagnostic cardiac tests: EKGs, Holter monitors, thyroid tests, treadmill stress tests, an echocardiogram, a thallium profusion test, and an angiogram.  All these tests resulted in a diagnosis of a normal, healthy heart with slight MVP (Mitral Valve Prolapse) and this harmless arrhythmia (mostly PVCs- Premature Ventricular Complexes). My heart, arteries, and circulatory system were structurally sound; there was no evidence of underlying heart disease, plaque or blocked arteries, etc.  I also had a complete physical exam with all normal results.  Yet my crazy arrhythmia persisted.  (I had an average of 200+ PVCs/PACs per hour and, at the worst, as many as 400+ per hour.)  I was told I had a “strong, healthy heart…It’s nothing to worry about.”  I was also told to “ignore my problem, and it will go away on its own.”  I began to notice that I had an abnormally high heart rate which seemed strange as I had never had it before.  The doctor said not to worry, that I “just run at a higher rpm than most…Come back in 6 months.”  So with a medical stamp of approval, I returned to normal life and tried to put it all behind me.  But I didn’t feel better.  The arrhythmia was as bad and annoying as ever.   Finally, after 4 months of no abatement of the arrhythmia, as well as an increasingly elevated and highly fluctuating heart rate, I decided to get a second opinion.

The second doctor reviewed the records, performed another echocardiogram, a treadmill stress test, and then concurred with the previous diagnosis of healthy heart with a benign arrhythmia.  He tried various drugs (Toprol, Rhythmol) to see if we could minimize it. (The Rhythmol worked well initially, but after a few weeks, it lost its efficacy even at higher doses.)  As for the elevated heart rate, it was discounted because it was normal whenever they took my pulse (sitting down).
Holter monitors showed that my heart rate varied greatly from sinus bradycardia at rest (below 39 bpm) to 120-140+ bpm with light activity.  This elevated rate was present the majority of the time but not always, and it did not seem to correlate directly to physical exertion.  I’d wake up in the morning and supine it would be 50 bpm, and just standing up out of bed, it would increase to 100 bpm or more as my baseline heart rate.  Finally, during one office visit, I made the nurse check my pulse after I stood up, which showed a significant increase from my pulse in a sitting posture.  (My pulse went from 65 sitting to 95 by simply standing up.)  Her eyes bugged out, and she said that was definitely not normal and that she would put it in the record.  The doctor could offer no explanation; “Very interesting” was all I got.  Additionally, my pulse was quite erratic.  It would suddenly surge and ebb, (not in relation to breathing), and it seemed to “stagger and stumble,” not maintaining any sort of consistency.  I found this as disconcerting and as bothersome as the palpitations.  Between these symptoms and the ectopics, my heart beat with the consistency and regularity of a pinball.  After several more months, I consulted with an electrophysiologist who was confident that he could “cure” my arrhythmia.  It had gotten to the point where the arrhythmia was unbearable, so I decided to undergo an EP test with Radio Frequency Ablation in January of 2001.  Unfortunately, under sedation my ectopics pretty much disappeared, only to return unabated after the procedure. 
Following that procedure, I decided to stop fooling around and began an aggressive, proactive, letter-writing and research campaign.  I obtained all my medical records and started pouring over them.  I got a book on EKGs and learned how to read them.  I wrote dozens of letters to cardiac specialists outlining my 3 main symptoms: palpitations, a highly fluctuating and elevated heart rate, and chest pain.  The ectopics were both PVCs and PACs with an average of 300+ ventricular ectopics per hour.  When it was bad, I had palpitations near constantly, feeling “skipping” every 1-4 beats repeatedly in sequential runs of bigeminy or trigeminy, which often lasted for hours.  I had bursts of tachycardia where my heart rate suddenly doubled or tripled to 200 beats per minute.  The elevated and erratic heart rate was not getting any better, and it seemed to be prevalent the majority of the time.  Additionally, I had frequent, non-radiating chest pain/discomfort left of my sternum; this was not associated with exertion.  It was usually a focused ache that built and subsided for hours, punctuated by an occasional shooting, stabbing pain that lasted only an instant.  This pain did not seem to correlate with the ectopic beats.  (The “skips” were not painful, themselves; I just felt the pause/hiccup or ensuing canon wave or jolt.)  These episodes of pain occurred primarily in periods of sedentary activity or while at rest, and they even woke me up at times.  Unlike classic angina, this pain did not occur in response to heavy exertion, and it was not accompanied by weakness or shortness of breath.  It did not diminish with rest, nor was it related to breathing, and I doubted it was G.E.R.D. or stomach orientated.
Prior to the “cold,” I never had any heart trouble or given it a thought.  I had always been healthy and active, had never been overweight, nor had I any family history of heart problems.  I had lived in a ski town at 7000 feet for 5+ years, skiing 85-100 days annually, and mountain biking, jogging and hiking often.  I ran my own house painting business, which was fairly demanding manual labor.  I didn’t smoke or drink coffee, and drank only socially.  Alcohol did not seem worsen my symptoms.  I didn’t do drugs and had never tried cocaine, speed, or other narcotics that jolt the cardiac system.  I also had a pretty good diet. I became familiar with the whole “MVP syndrome” but didn’t feel that most of the symptoms applied to me.  I had a “Type A” personality, but really did not feel too stressed other than the normal anxiety induced by my heart symptoms.  I was a well-adjusted, confident individual who, although a little high-strung, was basically pretty happy and very eager to get on with life.  I was aware that my anxiety over the situation was not helping but added to it, in the sense of a “self fulfilling prophecy.”  However, I couldn’t believe that it was the sole cause.  By then, I had tried to emotionally remove myself from the situation to be as objective as possible.  I tuned out and ignored my symptoms for the most part, but couldn’t help but “clinically” observe and note them at peak occurrences.  In short, I was forced to analyze them in a detached manner by their sheer frequency and pervasiveness.  I couldn’t help but doubt the doctors’ claims that it was no big deal when my heart was constantly “redlining” and misfiring almost every beat for hours on end.  The experience actually forced me to mellow out and relax more as well as re-prioritize and be thankful for the good moments.
I stopped taking the drugs prior to the EP test and did not resume them as I was uncomfortable with the potential long-term side effects of these drugs.  They didn’t seem to work anyway, and I felt that I should just learn to live with these symptoms if they were, as I’d been told, simply annoying and not serious.  Additionally, I felt that the drugs to control the palpitations might adversely affect the erratic/elevated heart rate by slowing it down too much at the times when it was “normal.”  I started taking extra magnesium and calcium daily to see if that helped any of my symptoms.  I looked at the Holter monitor results along with some other tests and found apparent inconsistencies which, when pointed out to the doctor, would get a response of, “Well I’ve really never seen that before,” accompanied by shoulder shrugs and head scratching. 
I was getting pretty frustrated with the whole thing by now and continued to deteriorate.  I questioned my sanity and wondered if I was just being a paranoid hypochondriac.  After all, this was the 21st century, and I had seen several reputable cardiologists and specialists. I had spoken or corresponded with many more, and they all said I was fine.  But I didn’t feel fine.  I knew my body, and things were not right.  During periods when I felt OK, I’d tell myself, “See it’s all in your head.”  Then things would go nuts again, and I’d think, “Forget the experts, I know something is definitely not right.”  I began to fear that I either had some crazy, terminal disease or even worse that I would have to go on living this nightmarish existence.  I went from not wanting to take any drugs to trying anything and everything that might help.  I began practicing conscious breathing techniques and read up on “skilled relaxation,” meditation, and holistic alternative treatments.  I truly believed in mind over matter and the body’s ability to heal itself.  I tried acupuncture and went to some “voodoo” healer (with a testimonial track record of miraculous cures- disappearing tumors, cripples walking again etc.) who basically knocked me down with weird, sadistic treatments.  Nothing seemed to help my symptoms.  
I began to wonder if I had exhausted all possibilities of conventional medicine other than stronger drug therapy.  Was I wrong to think that these three separate symptoms could possibly result from a common cause and should be addressed as such, or should each symptom be treated independently of the others, as had been the approach so far?  Were the frequent ectopics and wildly fluctuating/elevated pulse truly inconsequential as I was told, or could they be taxing my heart by adding additional load and strain to it?  Should I try ablation again, and if so, would it improve the erratic pulse and pain or just impact the palpitations?  Would an endocrinologist be better qualified to address my crazy elevated/erratic heart rate if it was due to a nervous system imbalance or a glandular disorder like pheochromocytoma?  Was I being foolish or doing damage by not wanting to take daily medication for the rest of my life?  Or was this all psychosomatic?  Was I just being a hypochondriac who should go see a psychiatrist?  I wanted to feel normal and good again, but if that wasn’t possible, I wanted to manage as best as I could and move on.  Contrary to what I’d been told, these symptoms were not improving with time and, in fact, were increasing and worsening.
Finally in August of 2001, 18 months after noticing the palpitations, my cardiologist stumbled onto something by chance.  It seemed he had a physician friend (and now patient) with Addison’s disease who had been diagnosed with POTS as well.  He was pretty sure this was what I had and that he had found the missing piece of my diagnosis.  So I took a tilt table test, and sure enough, I was “off the scale,” far exceeding the 30 bpm heart rate increase from supine to standing, which is the clinical definition of POTS. My heart rate went from 50 to over 100 bpm in about 10 seconds, and it never stabilized or dropped down, it just kept creeping up until they concluded the test.  At last, vindication!!  I was right all along and they had been missing something.  But my elation soon vanished as I poured over the Internet info and saw bleak, depressing stories.  While my doctor had succeeded in diagnosing POTS, he had no idea how to treat it.  He tried drugs to lower my blood pressure, which seemed stupid to me because I was hypotensive at rest and thought that they might lower my blood pressure to dangerous levels. They didn’t work anyway.
I researched doctors and institutions familiar with treating POTS.  I sent all my records to Vanderbilt, which rejected me on account of the arrhythmia because it wasn’t “purely POTS” and was too complicated.  That crushed me.  The Mayo clinics didn’t want me either.  By now, I was not eating or sleeping and was getting desperate.  I had lost 30 pounds, and I felt bad all the time.  I felt as if I was hung over and sleep-deprived.  Along with this, I felt like I drank a pot of coffee, smoked a pack of cigarettes, and had to dig a ditch in the hot sun without any water.  I was shaky, hollow, and jittery with no respite available to me through rest.  I had completely abandoned any sort of social life and withdrew from most of my friends.  As soon as I found out POTS was a nervous system disorder, I quit my painting business because I was sure chronic exposure to paint thinner (mineral spirits- read the warning label) coupled with the “cold” (viral infection- which was the common catalyst in many POTS stories) caused my condition.  So I wasn’t working anymore and was quickly becoming non-functional and depressed.  My doctor prescribed Paxil, which really ticked me off, and I refused to take it. 
Because POTS was nervous system related, and by now, I was confident I knew much more about it than my cardiologist, I decided to see a local neurologist.  Fortunately, he was familiar with POTS and confirmed that there were many different causal factors.  He said that the effective treatment of POTS depended on the cause.  Just as a fever is simply a symptom attributable to various causes, one would treat a malarial fever differently than one caused by heat stroke or the flu.  He further explained that because it was a disorder of the nervous system, there was definitely a mental component to it.  What I was experiencing at times were symptoms of a panic attack, but fortunately, in my case, without the panic (just the rapid heart rate, sweating, agitation etc.).  He compared it to clinical data of asthmatics who feel they cause their attacks.  The studies show they first experience a bronchial spasm and then “freak out,” not the other way around.  The physiological response by the brain to the body’s symptoms is the alarm going off due to a problem, not a psychosomatic manifestation.  While that was reassuring, it still didn’t help me in any direct way. 
Earlier that summer, I had decided to stop ignoring the arrhythmia and sought out the experts in electrophysiology.  The guy who did the first RFA locally wanted to do it again, this time without anesthetic, but I was hesitant because I didn’t like his attitude.  While I was recovering in the hospital overnight following his original EP test/ablation, the nurses became alarmed a couple of times when my heart rate was below 40 bpm while I was sleeping.  The following day, my heart rate was 150 bpm while standing and walking for the first time since the procedure.  This doctor completely dismissed my accounts of this elevated heart rate being part of my problem; he said I was “just dehydrated” and made me sit with a fluid I.V. for four hours.  He seemed to be angry that the procedure didn’t work because it was a blemish on his record rather than demonstrating any genuine concern for me, the patient.  He had already fried two spots on my heart to no avail, and I figured if I was going to go through that again, I wanted the most renowned, reputable experts in the country to perform the second ablation.  This led me to make an appointment at the Cleveland Clinic Foundation’s E.P. department for later that fall. 
While later researching POTS experts, I was fortunate to find that the CCF had a doctor who treated POTS in their Syncope Clinic.  So I figured I could kill two birds with one stone and try to fix the arrhythmia with another RFA and treat the POTS while I was there.  They were kind enough to allow me to book an appointment with the POTS doctor after my scheduled electrophysiology appointment.  So off to Cleveland I went, where the syncope doctor performed a series of tests to confirm my POTS.  I had another tilt table test (where they were “impressed” with my heart’s ability to quintuple its rate from 40 to 200 bpm within a few minutes).  I also had blood volume, hemodynamic, and isuprel tests.  All these confirmed the POTS diagnosis and specifically found that I had hyperkinetic circulation as well as an imbalance in my beta-adrenergic response.  I was told to stop all strenuous activity for 6 months to a year and to take a combination of Lopressor, to slow my heart rate down, and Levsin, to help the beta-adrenergic imbalance. I was told that I just needed to give my body time to equilibrate, and I would probably be OK.  Would I ever ski or run again?  Could I fully resume my previously active life? Only time would tell.
Meanwhile, the EP doctors said I had a rare but “textbook” EKG signature that they had seen in two-dozen cases over the last couple of years and successfully treated.  It turns out that my arrhythmia was being triggered NOT in the right ventricular outflow track as the first doctor had thought (and ablated), but in the aortic cusp.  This was a much riskier ablation because obviously, if the aorta was nicked during the operation…well, it would not be good.  I decided to go for it and returned to Cleveland later that month to undergo a second EP/RFA procedure to hopefully “cure” my arrhythmia.
(I’ve neglected to explain what is involved in a RFA.  Similar to an angiogram, they put you under light sedation, tap the femoral artery in the groin, and run a wire up into your heart.  Then, they stimulate various areas of the heart with electrical impulses and drugs to try to find the spot that is generating the extra signal; it’s kind of like looking for the needle in the haystack.  Once and if they find the culprit spot, they then zap it with radio waves to fry it into scar tissue, which is electrically neutral and eliminates the aberrant signal causing the ectopic beats.  Unfortunately, many arrhythmias are sensitive to sedation and “disappear” during the procedure, as was the case in my first RFA.  The CCF docs told me they used atypical drugs that were different than those used in my first procedure to prevent this and not to worry.) 
So they did the ablation and felt it was pretty successful, save the fact that after four hours on the table my arrhythmia ceased again.  I had not one ectopic beat in ninety minutes while under sedation, compared to my normal several hundred per hour 24/7 for the past 20 months.  They felt they might have to do it again in a few months to “clean it up a bit” depending on how things progressed with my recovery.  “Great,” I thought. Once again, doctors dismissed my concerns only to have my fears realized after the fact. But hey, what’s another round of poking my heart with wires?  Even worse was that although my arrhythmia had been 95% PVCs up to this point, following the second RFA, the composition of my arrhythmia flip flopped from PVCs to PACs!  I had them slap a Holter on me the day after the RFA during recovery because I could feel something was different.  (By this point, I was so attuned to my skips that I could accurately call out what was a PVC and what was a PAC while undergoing echoes and EKGs).  The Holter showed an average of 300 + ectopics per hour.  While clinically PVCs are more serious than PACs, the PACs seemed more bothersome to me.  This change in ectopic composition was explained to me as a probable rebound effect.  The sudden absence of near constant PVCs had my heart reeling and the PACs were stepping up to take over the recently cleared electrical pathway.  I just had to wait a few months to see what transpired. 
So I returned home with instructions to relax, take the drugs, and see what happened to both the POTS and arrhythmia symptoms.  Additionally, I had a prescription to start a level-3 cardiac rehab program to help the POTS symptoms.  It took several months to get the insurance company to approve this, during which I definitely felt better as far as the POTS symptoms, but the arrhythmia was bad as ever.  My elevated heart rate seemed to be normalizing by no longer “redlining” and by responding appropriately to exertion/exercise and rest/recovery.  I’d say I was back to 50-60% functionality of my pre-POTS condition.  The arrhythmia was actually getting worse though.  Further Holters supported this conclusively; they showed a maximum of over 800 PACs in one hour, and that wasn’t even the worst day!  I was resigning myself to returning to Cleveland for another round of RFA when something strange happened; I woke up one morning and felt good.  Normal.  My heart was actually beating regularly.  I sat there in bed for a half hour waiting for the skips to start.  After a couple hours without a skip, I was incredulous.  As quickly as it had begun, it seemed to be gone.  Just like that.  It was like flicking a switch on and off.  It was the darnedest thing.  I had to restrain and temper myself because it was too good to be true.  The next day was as good as the first.  After a week I couldn’t believe it.  Was it really possible?  Could I really be over this thing after more than two years?  The doctors were finally right, and I just had to give it time to let my body equilibrate and adjust to the procedures and treatments.
I finally started the cardiac rehab program and felt pretty weird because I was this 30-year-old guy in with a bunch of geriatric heart attack patients.  The program was very conservative and initially seemed like a waste of time, but I had prepped the staff with all the POTS info I had and put them in touch with the experts at CCF.  So I acquiesced to their expertise and eagerly went as often as I could.  After a month or so, they felt I had progressed to the point where I could exercise on my own.
I was really feeling like my old self (my pre-POTS self) physically.  Mentally, it was much more of a struggle.  I kept waiting for the POTS or the arrhythmia to suddenly come roaring back.  I was constantly checking my pulse.  The fears were always lurking in the back of my mind.  It was as if this recovery was just a temporary reprieve, a quick taste of freedom before being enslaved again like some cruel joke.  But the recovery didn’t end.  I took an entry-level position with a software firm and started working again for the first time in nearly a year.  I started jogging again; I didn’t go too far or too fast but I was running and asymptomatic on all fronts.  It was amazing.  That winter, I returned (for the first time since I had departed) to my old ski town to ski with my buddies for four days.  I was very nervous as I still considered myself to be in terrible shape and was worried about overdoing it.  For the most part, my friends were unaware of what I’d gone through and hence decided to punish me hard on the hill.  To them, I was just another fat, out of shape, city guy who used to live here and deserved to be worked over hard for old time’s sake.  Other than sucking wind due to the altitude and lack of conditioning, I had no problems and had a blast.  For me, that was the true test. The fact that I could be an out of shape desk jockey and go back to hang with the boys with no POTS/arrhythmia repercussions was the proof that I was back.
The spring of 2003 marked three long years since I noticed something wrong while down in Costa Rica.  Later that summer, I once again returned to the Cleveland Clinic for a follow up with the POTS and EP doctors.  I had a complete physical and neurological evaluation and received a clean bill of health on all counts.  Since then, I moved back to Colorado and have skied about 85 days this past winter.  I work for a friend’s construction company as a carpenter, which can be pretty hard physical work.  I still get the occasional ectopic beats here and there but nothing of consequence.  It probably took another 2 years to mentally get back to my pre-POTS self, but nowadays, I rarely think about it.  When I find myself getting all worked up over stupid, silly, day-to-day aggravations, I make myself remember.  It forces perspective on my life and makes me laugh it off.  I stayed on the two drugs for a long time.  I quit the Levsin after about 15 months and finally quit the Lopressor after 3 years.  I was afraid that if I stopped the medications, the problems might come back; it was a mental crutch.   “If it ain’t broke, don’t fix it.”  But eventually I had to try, and luckily, there were no problems.
The point is, that if someone like me with two overlapping but separate conditions (POTS and a severe arrhythmia) can wind up recovered, then there is hope for everyone out there. It is not fun, easy, or quick, but you can resume your life and be normal again.  I’m nothing special and certainly did not conquer my conditions through any exceptional mental fortitude or anything like that.  This thing beat me down.  I started out strong and determined but eventually became despondent and succumbed to it.  I wouldn’t say I overcame it; I just endured until eventually the clouds parted and the sun shined once again.  Luckily for me, sometimes that is all it takes.  You just have to plod along and do your best to persevere and weather the storm.  If you can just go on every day and do your best to ride it out, you may get there.  This is no Lance Armstrong story of amazing grit and determination.  I am an average Joe who did his best and sought out the help I needed.  It could come back tomorrow.  I hope not, but if it does, I’ll be better able to handle it and will have a much better attitude.  I read somewhere that the illness is the physical affliction and the sickness is how you mentally deal with it.  They can work against you in that the worse you get physically, the worse you feel mentally, which in turn makes you get worse.  It can turn into an ugly downward spiral, but you have to do what you can to try and suck it up to break the one aspect of the cycle that you can impact.  Do be proactive and educate yourself and your doctors.  Be aggressive and explore all options.  Be persistent.  I was treated by over a dozen physicians in various disciplines and consulted or corresponded with two dozen more.  Many were dismissive and did not want to deal with me because my case was too complicated.  Keep knocking on doors even after they slam in your face.  I lost 3 years of my life, but eventually I did get it back.  The information out there on POTS and today’s treatment advancements is far better than it was six years ago; so don’t give up because there is ALWAYS hope.

by Phyllis in Marshall, N.C.
July 2006
I have worked in the medical field for almost 40 years in every respect except billing.  I worked as a clinical assistant, x-ray technician, lab technician, surgery scheduler; you name it, and I had conquered it.  I divorced my husband in my 40's and became physically active for the first time in my life.  I biked, kayaked (whitewater and flat water), hiked, and did all kinds of wonderful things.  I had a life I never thought was possible.  I moved to the beautiful mountains of western North Carolina with a man who, I soon found, wanted another kind of woman.  So I left him and bought my own home (ah, what a wonderful feeling).  The only negative in my life was my job.  It was horrible.  Because of incredible stress, low pay, emotional abuse from superiors, and long hours, I began to gain weight and got severely depressed.  As bad as it was, there didn't seem to be other jobs that paid as much in the area, so I stayed.
After about 4 years, my feet began to hurt near the Achilles tendon area.  Just walking was so incredibly painful.  I got orthotics and special custom-made shoes, but it didn't help much.  Anti-inflammatories did not help, and doctors wouldn't give me pain medicine for chronic pain.  Finally, I had the bone in both heels sliced off and was told that should help.  It did for a while, but then the pain came back with a vengeance in the right foot.  This time, more bone was cut off; the tendon was cut loose.  Bone (which had formed on it) was scraped, and it was screwed back on with a Titanium screw.  Again, I felt relief for a while.  But I had to quit whitewater kayaking.  It was just not cool to run a class 4 rapid and then be such a wimp that I couldn’t carry my boat to the car.

I continued to gain weight and found a new love—unfortunately or fortunately, depending how you look at it. He loved to cook and fed me to show his love.  He loved me close to 100 lbs worth. So when I began to have health problems again, I thought it was just due to my weight gain.
I started to have chest pain in just one little spot.  I went to the MD and he told me it was from straining on the cord of my lawnmower.  (That buzzard was so tough to crank that sometimes I would have to lie down in the yard and rest before resuming.)  It seemed like a good answer, but the pain continued into the winter.  An EKG was negative, and a stress test was also negative.
Two years later, after reading an article in the local paper, I found out that a stress ECHO was more a more definitive diagnostic test for females with heart problems, so I had that done.  I failed it big-time.  I was told that I probably had occluded arteries in my heart and that I should be ready for emergency surgery when I went for my cardiac catheterization.  However, my cardiac catheterization was perfectly normal with only minimal plaque build-up in my arteries.  My cholesterol and triglycerides had been so high for so long that they could not even be measured by the lab tests.  Both of my parents had died of heart attack/strokes. 
Next, I was out on a Holter monitor that I had to wear for 30 days (called an event monitor).  Each time something went wrong in my chest (like missed beats, pain, etc.), I was told to push a button, and the machine would record it.  After that, I was told to call and send the report by phone.  Well, the Holter monitor must have been made for the severely hearing impaired.  Even though you could not tell I was wearing it, people on the next block could hear it when I pressed the button.  My symptoms were the worst at work, but because the monitor was so loud, I did not press it when my heart was the worst.  It didn't matter though, because I failed it miserably.
I then had a nuclear study (injection version of the stress echo), which I believe I passed.  The cardiologist told me that I had Cardiac Metabolic Syndrome.  He said it would hurt, but I was at a much lower risk for a heart attack than the average bear.
I had begun to notice by this time that just about every holiday time, I was sick with some off-the-wall problem.  I had back pain from out of the blue, gall bladder trouble (which required surgery), and arthritis in my knees.  I went from being a great employee to being a high-absentee employee.  I went back to the cardiologist, but he had retired.  So I saw a new one who promptly told me that he did not believe in Cardiac Metabolic Syndrome.  Hmm...thousands of dollars for nothing.
Frustration had long been a daily thing.  I was seeing a psychiatrist monthly, and was on a beta blocker as well as blood pressure medicine.  Then, another set of holidays rolled around, and I got very ill.  I was vomiting, had headaches, and a fever; it lasted two weeks.  I was tested for everything, but all tests were negative.  I made myself an appointment with an infectious disease MD that I knew.  She said that I had probably had a severe viral infection, but I was coming out of it.  She also told me that I was too complicated for a family practice MD and to get an internist.  I did get an internist, and he changed my blood pressure medicine.  I began to have lots of problems.  My blood pressure would be high enough for a stroke, and then an hour later, it would be low enough to pass out.  When I had seen the internist 10+ times in a month, he told me that I had an attitude problem, and that my anger was probably causing my blood pressure shifts.  Well, I hadn’t been angry until then, but he changed that.  That was the last time I saw him. 
I saw a new internist, and he had no idea what was wrong with me.  After doing several thousands of dollars of tests (all negative), he sent me to a urologist.  The urologist repeated half of the tests and said I needed to go to Duke or Bowman-Gray (large teaching hospitals in North Carolina). He didn't know what was wrong either.
While crying to my psychiatrist, he asked if I had gone to a cardiologist he knew in Hendersonville.  I had not, but I managed to get an appointment.  I had all my records sent to him and went in waiting for the whole thing to begin again.  Within 5 minutes, he said, "Well, I know what you have, and that’s the good news; the bad news is it is incurable."  He told me that the 2-week illness I’d had was a brain stem stroke, which very few people survive.  (I did not even know I’d had it, though I did go blind for a couple of days during that time.)  It had affected my left side.  My eyes were rapidly, subtly, twitching back and forth, and my gag reflex was gone.  He said the stroke was caused by an infection, not a clot.  He told me that I had POTS, a form of dysautonomia, and to check it out on the computer.  He sent me for an oblique cervical spine MRI--not a normal view.  When I read the report, I could not believe it!  Part of my brain stem was in my neck, and part of my spinal cord was out of the spinal canal (Chiari).
He put me on Lortab (pain), Zanaflex (muscle spasm), Lasix (fluid retention), Aldactone, Tenormin, and Midodrine for my blood pressure.  I was, of course, still on the anxiety and depression medications from the psychiatrist.  With a little fine tuning (after my first experience with hallucinations), this treatment seemed to settle my blood pressure down better than it had been in a year. 
Then, I had my knee replaced and got a bladder infection in the hospital.  That sent me off to the races again.  My immune system is almost non-existent now.  I have had pneumonia 5 times since November, 2005 and a simmering bladder infection the whole time.  I catch everything, and I heal very slowly.  I am still dealing with the bladder infection.  I have taken several very bad falls when my blood pressure has plummeted, but have had no breaks so far.  (There are some positives to being large!)
My physician described me as a "high functioning" POTS patient, but I am unable to drive much, have constant memory loss, and black out for as long as a week at a time.  Even though I am up and functioning, the lights are on, but no one is home!  I was able to hear 4 separate times that I am going to be a new grandmother, and each time was the first, though it was for the same baby.  I get to see movies for the first time over and over. 
I take my life a day at a time, and sometimes a minute at a time.  I was able to get long-term disability from the horrible former employer before they could cancel it (and they did try hard and fast), but my insurance runs out in November.  Does anyone know of anything you can do in this situation?  I make too much for Medicaid and my disability is on a private policy, so I still have to wait until 2 years after social security disability is finalized for Medicare.  I would really like help in that area.  My worst fear is that I will lose a place to live while trying to do this.  We all know that it is only sometimes that we are "here" enough to accomplish much.  Also, I would like to hear from anyone who would like to e-mail back and forth on the illness.  People who do not have it just do not seem to understand.

  • Create New...