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  • 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


Lori's Story

By edriscoll, in Member Stories,

By Lori Valenti
October 2002
My name is Lori Valenti. I have had an extremely difficult last six months. I just graduated from Umass last Dec. 2001, and got a job that I really loved. After working for the company for about 3 months my boyfriend and I got an apartment together. The very first night I stayed at the apartment I had an awful asthma attack. Over the next 2 months I would go back and forth to allergists, pulmonary specialists, and many other doctors. I was developing skin rashes and becoming very fatigued at the apartment, along with the allergies and asthma. I came down with a bad respirtory infection and finally had to get a lawyer to get my boyfriend and I out of the lease. We had to be out Aug. 1st, this was fine by us.
At this point in time, I thought the hard part was over. On July 11th (and I will never forget that date) I was standing at work and I got a very strange sensation in my head. It was not painful, but is was scary and it lasted for about 10 seconds. Immediately following the sensation I became dizzy and started to vomit. I went into the bathroom and started to splash water on my face, but I was still dizzy and nauseous. I came back into the office and realized my vision was blurred. I asked my boss if she would follow me to the doctors.

When I went into see the doctor I told him all my symptoms. He said I was depressed and gave me a prescription for Zoloft. Figures! That was a Friday. I went home that night and slept around the clock until Sat. night, when I woke up for about 1 hour and then went back to bed. Sunday morning I went to the ER. They did a spinal tap on me and told me that I had viral meningitis. Later I found out this was not the case. After several weeks of not getting better I went back to the ER. They did blood work and took a urine sample and told me I was fine.
About 1 month into this, I woke up in the morning and had an extremely rapid heart rate. I went to the ER and the EKG said 168. That was sitting down. They dismissed it as the lovely "anxiety" and sent me home against my will. The next morning I woke up and my heart was racing again. When I stood up I fainted (the first of about 8 fainting episodes), and I went back to the ER. They did blood work and took my urine again and said I was fine. The doctor specifically told me that there was nothing more that they could do for me there, and that I shouldn't come back. That was a nice feeling when I was so scared about my health…
Finally, the following day I was taken to the Mass General and admitted there. I met a wonderful doctor, who is working with me and researching as much as he can about my problem. I was diagnosed there with POTS. My doctors keep telling me that I will get better. The neurologists and cardiologists can't seem to find anything wrong. They just know that my heart beats too fast (and also too slow at night time.)
It has been 3 months that I have been really sick. I am mostly bedridden except for the days that I go to the doctor's office. I wake up every morning feeling like you would with the flu. My arms are completely numb. My heart starts to race. Then I take my meds, inderol and midodrine, and I force my way to the couch. I have no strength at all. Before this all happened I was running about 5 miles a day. I am nauseous all day, and for the first 5 weeks was vomitting a lot. I am so dizzy, for the whole day, and I have some concentration problems and vision blurring. I mostly sleep the whole day because of the fatigue and weakness. And through all this every test that I have taken has come back negative, except for the table tilt.
I have a good support system and I thank God for my family and my boyfriend who have been so supportive. They have also steered me away from doctors who are quick to label "anxiety". My mind is very confused as to what happened to me. We still don't know what was in the apartment that made me so sick. I am starting to become very depressed about my deteriorating health and I pray for some remission. This all just seems like a very bad dream. I try to do yoga when I feel up to it but, unfortunately, that is not too often. I just say to myself every night before I go to bed, " Maybe I'll wake up tomorrow and it will all be gone."
Update: There is Hope, I Promise!

By Lori Valenti
October 2004
Hi everyone!  I want to share my story with everyone, and I hope that it will lift some spirits.  I originally became sick in July 2002, and I was diagnosed with POTS in August.  I saw Dr. Grubb in November, and a few months after that my doctors found the underlying cause of my POTS, Sarcoidosis.  Sarcoidosis is an autoimmune disease that was attacking my lungs and nervous system.  I was given large amounts of steroids, and the Sarcoidosis was put in remission.  The POTS stayed, but some of my more bothersome symptoms subsided. 
Through all of this I was very scared.  I was, however, not going to let this take over my life.  I did extensive research on the diseases, and I found an excellent doctor.  I became an aggressive patient that never went to the doctors without a list of questions.  I began walking very slowly on the treadmill everyday and just built up my stamina.  In the meantime, I was going through what we all go through:  testing out different meds, having very bad days, and having very scary new symptoms.  I did not skip a day of walking though.  Exercise made me feel better and gave me a goal, so I began to do yoga.  Yoga made me very focused and balanced and, though I trembled through every move, it made me very strong.  I began to read books on nutrition and how important it is to our condition.  I cut down on sugar, and I ate smaller portions of food.  (So at this point I began to get in very good shape—even though I was fighting this disease.)  When they finally took me off the steroids, my Sarcoidosis was in remission, and I lost the rest of the water retention that I had.  My medicinal regiment was now only for POTS.  Inderal LA to help the severe Tachycardia, Adderal XR to boost the ever-low blood pressure, and Wellbutrin SR (still not sure why I take that exactly, but Dr. Grubb explained it does something with the chemicals in my brain, and it works!)
OK, so now for some good news…..  A year after I got sick I started back at my job.  This took my mind off of my illness and made me feel stronger.  I had a very accommodating job that let me work a few days a week.  I went back in August 2003, and at that point each month, I was improving drastically.  I know my symptoms.  I’ve learned how to control them, and I don’t fight them.  If I am having a very bad day, so be it!
At this point something great happened to me…  I was doing things that I normally wouldn’t do because hey, I could again.  So, I went to this acting audition in Boston.  I was chosen to fly out to Hollywood and compete in an international competition.  Well, I ended up winning “Best New Actress of the Year” runner up the month before my boyfriend proposed to me, so I was pretty happy.  I was approached in Hollywood by some agents to move out to LA.  Well, I did it.  Obviously it was a tough decision.  I went through many doctors appointments to convince myself that I could do it, and I flew home every three months for check ups, CT scans, EKGs (you name it).  I pay “through the roof” prices for a good PPO plan to keep my doctors, but it’s worth it. 
Anyways, two months after I moved, my agent called me and told me to go on an audition for the CBS reality show Big Brother.  Long story short I got it!  Yup, I was on the show these past few months, the finale just aired September 21.  (Pretty soon you’ll be able to get the DVD.)  I won $10,000 the very first night that I was there.  Now, I do have to say that I didn’t make it very far.  I was evicted after the 3rd week, but that was OK.  I started to actually not feel very good in the house, but that was because I was not sleeping and not on a good diet at all.  I realized, very quickly again, how important it is to take care of yourself.  (BTW, that $10,000 paid off all my medical debt and even got me some other stuff!)  I made great friends on the show and had the most unbelievable experience.  No one ever even realized that I would get up every morning and have to take three pills.  So, I have to take care of myself, big deal, so don’t asthmatics and diabetics? 
I hope that everyone can feel a sense of hope from this story.  I was very, very sick two years ago.  I was very depressed, and I thought my life was over.  But, I hit rock bottom and was not happy feeling bad for myself.  So, I helped myself.  It is so important to find a doctor that will work for you and for you to be completely compliant with treatment.  Also, help yourself as best you can.  Enjoy your days.  Educate yourself with literature on this disease, and be an advocate for yourself.  Do something that will give you a goal to work towards.  Most of all—do not dwell on the negative.  Yeah, we have a lot of stuff going on, but I started to feel best when I was no longer scared.
You can read all about Big Brother 5 on these websites. (Pretty soon I will have one of my own, and I will have a section that tells all about the disease.  I will try my best to keep people educated about the disease, and I’ll keep you updated.)
Lori's website:
Big Brother websites:

By Cindy Weber
November 2002
My name is Cindy Weber. I was diagnosed with POTS in 2000, my sophomore year of high school, at age 16. My diagnosis was a scary situation, and it included kidney failure.
I have always been a cross-country and track runner, and I've always been rather talented. Ever since I can remember, though, when I finished running I was always pale. I thought this was weird because the other kids were always flushed and red, whereas I looked like I had just seen a ghost. It never hindered my running, though, so we just laughed and I thought nothing of it.
Sophomore year, at the Regional Cross-Country meet, I got really sick. Several other times before in the season I had passed out after the race, ending up in an ambulance because my heart was racing at 200-250 beats per minute. My heart would beat too fast for a whole hour after the race, and I usually felt sick after I finished running. However, I was motivated like heck, so I kept running. I got 5th place in my league and 13th in my district. I was running really well and my coach was happy. We were expected to make it to States (OHIO) that year. At the regional meet, though, I fell apart. I got to the second mile marker and the world started to spin. My legs felt like lead and I lost my sense of balance and control. It took me over 10 minutes to run that last mile, and it usually only takes about 6 minutes. I could not hear anything, I could barely see, and I did not know what was happening. I could feel my heart about ready to pop out of my chest. I was almost to the finish line when I collapsed. The officials would not touch me, though, because I was still in the race. So, they let me crawl across the finish line. I put my hand on the white line and blacked out.

I woke up later surrounded by EMTs. It was very scary. My heart was racing and I was really winded.
That night I threw up blood, and my mom took me to the hospital. I spent a week in the hospital, in the pediatric intensive care unit, and then on a regular floor. They figured out that my kidneys had shut down. The doctor said that my heart had started beating so fast because it wasn't getting enough blood. The blood was pooling in the veins in my legs and not enough was getting back to my heart. So, in order for the heart to get its needed blood it started shutting down other organs, like my kidneys. I'm glad it did that, though, instead of going into cardiac arrest or something.
I saw a kidney doctor on a regular basis for awhile. Then I went to a cardiologist, and he found nothing, so I went to a neurologist. It took months for them to finally figure out what was wrong with me. I went through a lot of tests, gave a lot of blood, etc, and finally they diagnosed me with POTS.
I was given a beta-blocker, Nadolol, which I still take two years later. They also have me taking 8 grams of salt a day, which I do not like at all.
I am back running competitively again, and that impresses my doctor. He says that because I'm so young I have responded well and it’s not affecting me too much. I still get dizzy though, and I still have a fear of just dying when I run. I try not to let that stop me. I just run through it, but every time I feel my heart start to race I get scared.
My illness has made me want to go into medicine. I have applied to colleges as pre-med, and next week I have 3 interviews at a medical school that accepts college freshmen into an accelerated program and guarantees them a seat in the medical school. I am very excited. I guess getting diagnosed with POTS has had its pluses too...


Heart Story

By edriscoll, in Member Stories,

By Jolene
August 2005
I have been grateful for the personal stories on the website and find I can recognize a little of myself in all of them. I thought it was about time I provided mine.
I cannot pinpoint the exact time or day when things started to change in my life due to POTS.
I am 30 and married with 3 school aged children. In 1998 I had dental treatment and was overdosed on diazepam with 2 ampoules through IV, which was too much for my very slight body weight!  My breathing was compromised, an ambulance was called and adrenaline administered. I was admitted to a hospital overnight and discharged.
Just a note, before I go further, with all of my pregnancies I have suffered extreme hyperemesis which I recently read somewhere on this site is common with POTS.
When I think back on it now, I was suffering POTS symptoms for many years before finally stepping back and realizing something was not right with me. When you are young and busy with babies, it is easy to forget about your own health and ignore niggling symptoms which can easily be put down to tiredness from sleepless nights and having a young family. Another thing is we get used to feeling the way we do, and how do you define what is "normal"?

You should see my GP's notes!  In the end, I would be in tears saying something was wrong...but what.
I know that I have always been very thin, and no matter how much I eat I can not put on weight. I always felt good when pregnant (despite the hyperemesis!) due to the fact I had some meat on my bones!
It started with ectopic beats - flip flop heartbeats...and a racing pulse. That was my first indication something was not right. Once again, with a busy life and young babies, I ignored it. I would often, sometimes weekly, get sick; and I thought I was not getting enough sleep or eating the right foods.  My HR sits around 100-120 bpm, and when I am busy it can get up to and above 180 bpm.  My BP is all over the show, and I have given up wondering what it is now.
A few years ago, I was referred to Dr Jardine, based at Christchurch Hospital.  He diagnosed me with POTS. Due to my ability at that time to manage/cope with POTS, no treatment was given. I find some days I am worse then others. I can become tearful and frustrated on my bad days and find it hard to know if it is related to POTS or just an off day. Apart from that one day with the cardiologist, I have had no management of my condition.
Just lately I have found things have become much worse. I initially did not even consider it was POTS, but thought I had some terminal illness or I was losing my mind. Interesting to note that for as long as I can remember, I always sit down in the shower, as it is where I am most comfortable, and I feel less off balance. Fatigue has become worse even though my youngest has started school.  Where is the logic in that?
I feel more light-headed and dizzy even when just sitting; I feel a see-saw effect which is very scary. I am not moving bodily, but my head is! My blood pressure is low, even on Florinef.  We recently took a plane trip as a family, and I NEVER drink, but I felt so bad that I cried and asked for a double whiskey! Thinking back on this, it was POTS! I never considered it then. The downwards pressure was tremendous, and I really felt like I was going to pass out.  It was to the point on take off that I could NOT lift my head up from my chest. I also feel nausea most days and will wake up and dry retch at least once weekly. I cannot eat mince, cheese or anything fatty/spicy, or otherwise after a couple of hours of stomach cramps/pain I am physically sick. I have lost my appetite over the past six months and don't want to eat, but I do it out of necessity. This is sad as I used to have such a healthy appetite, and I could eat my husband under the table at buffets!
Lately, I have had tremendous pain in my legs (this is a new symptom for me) from hips down. It is very bad at night. I am petrified of developing CFS, as I know this can come on due to POTS. I simply do not have the time to be unwell! It scares me.
The house can be nice and tidy one day and a mess the next. What do I do?  I am angry and frustrated.  I feel old before my time.  These are meant to be my best days. I remember when I was younger and the kids were little my house was perfect. Not an item of clothing was to be seen, not a dish, not a toy, everything had its place, and I was the model mom. I sometimes wonder if I contributed to my POTS due to my super-mom mentality! You have to wonder!
I do not like taking medication of any sort, but lately I feel willing to try anything.  I feel my condition has certainly worsened since my diagnosis and have an appointment this coming week with my cardiologist, as I am feeling so bad.  Today is an off day, and what prompted me to write this is that I am so damned TIRED!! I want my life BACK!!
I feel for all of you and the hundreds of others out there who have yet to be diagnosed with POTS and who are possibly, like I was, wondering what the hell was wrong with them.
Strength to all :) xxx


My Dysautonomic Destiny

By edriscoll, in Member Stories,

By Daniel Jacoby
June 2002
I: Pre-Dysautonomia
It was mid-1996. I'd just celebrated my 36th birthday. I had been in business for myself for almost 10 years and had a fantastic wife and daughter. Things in my professional and personal life were as good as they could be. My current company, which had only opened for business 3 short years earlier, was being bought by a public company and I would soon be able to take a few months off for a well deserved rest. Little did I know what the next few years would hold for me.
About a month into my 'rest' period, I noticed a very small lump on the lower right side of my neck. I walked into the Medical College of Virginia's Cancer Center on a Tuesday and asked if a surgeon was available to give me an opinion about the lump. As my wife and I stood in the lobby, the surgeon immediately identified the lump as thyroid cancer and asked when I would like to have it removed. I jokingly said, "How about tomorrow?", to which he replied, "fine". Before I could begin to worry about my newly-diagnosed health status, I was getting my pre-op testing done, stopping by the lawyers to make sure my will was in order and waking up at 4am Wednesday for my scheduled 6am surgery. Everything went fine. After a couple of weeks of recovery, they scanned me for remnants of the cancer but found nothing. This was a bonus, as I would not have to go through any radiation therapy. I had really dodged a bullet and had a fresh new perspective on life.

With my new lease on life, I started doing things I had wanted to do for years but just never took the first step. I started snow skiing as often as I could and my skill increased beyond my expectations. It was this new love for life that would ironically lead to what would become a fight that made my thyroid cancer battle look like a pillow fight.
I was on a ski trip with some high school friends in Steamboat Springs, Colorado, in February of 1998. I headed off on my own to the top of the mountain and found a great, slow paced slope that would provide almost an hour of leisurely skiing before I got back to the bottom of the slopes. It was to turn out to be anything but leisure. About halfway down the mountain I noticed a young inexperienced snowboarder at very high speed closing in on me. He was completely out of control and before I could even consider a way out, I was hit hard and knocked face first into the snow. My head made a violent motion backwards when my chin hit solid ground. At the time, I was able to shake it off and even continued skiing for the remainder of my visit. A month would pass before I would begin to see the signs of damage that had been done in the accident.
During March of 1998, I began to experience pain in my left arm, shoulder and neck. Not long after that, my lower back and right leg began to hurt a great deal. The pain became so great, that I visited a Neurosurgeon at the Medical College of Virginia, whom I still consider to be one of the best in the world. Following an MRI of my spine, he recommended against surgery because of my age and suggested that I try physical therapy instead. It took more than a year and a half, but the pain began to subside by the beginning of 2000. Unfortunately, I was about to start experiencing symptoms that I could not begin to explain.
II: Early Symptoms
As the pain in my arm, neck and leg subsided, I began to experience strange spasms in my throat, about every three weeks, that made me feel like I was choking. These episodes usually happened late at night or during sporting or other crowded public events. In September of 2000, I visited an Ear, Nose, and Throat specialist who diagnosed my problem as acid reflux and prescribed a daily dose of Prilosec. These intermittent episodes continued and, just before Christmas, I had an added symptom - the entire right side of my neck would be in severe pain and would often spasm for minutes at a time. At this point, I had no idea what was happening to me or in whom to turn. I just tried to relax and things seemed to stay in check. Until...
III: Sudden Onset
On Tuesday, January 16th, 2001, I was working about 130 miles from home on a project that required I keep a corporate apartment and be away from my family for 3 or 4 days each week. The weekend before I had experienced mild flu-like symptoms. Monday, I had an argument with a client whose business was doing poorly who refused to pay his invoices. Tuesday started with a poor nights sleep, a walk through icy snow to work and mounting pressure at the office. At 11am I had an instant major episode in my office which included a choking sensation, heat rush, dizziness, nausea and what felt like the flu being poured into my body. I did what I could to stand, did not even shut off my computer or grab my brief case and slowly trudged back to my apartment.
I had no idea what was happening to me. Lying down didn't help. A warm shower didn't help. I felt myself feeling close to passing out and propped myself upright on the sofa pillows. I held on for a few hours while taking in as much water and Gatorade as I could. I finally made it to bed, but was alone in the apartment far from home with nothing but cable TV and a cell phone. I remained in bed through four sleepless nights before mustering enough strength to drive the 3 hours it would take to get home. Within 24 hours of arriving home, I found myself at the local ER close to syncope at 3am. They diagnosed me with the flu, gave me some potassium tablets and sent me home.
I saw my PCP, who also made the same diagnosis. Knowing there was something more serious going on, I went to other doctors until I found one who actually did a "poor man's" tilt table test which showed my elevated heart rate from the lying down, sitting and standing positions. This was a major breakthrough, as I was soon able to investigate the world of Orthostatic Intolerance via the Internet and begin to find others that had very similar stories and symptoms to which to relate. I was also admitted to the hospital for EKGs, an Echocardiogram and a Tilt Table test
IV: The Darkest Days
Even though I had been diagnosed relatively early on, my worst days lay ahead. No one in my hometown knew much about treating the symptoms of my syndrome. I became so bedridden over the coming months that I couldn't even lift my head off the pillow or move my arms without triggering my tachycardia. I also began to slowly lose my appetite and lost 50 pounds during a 3 month period. From late February through June, I was completely debilitated.
With an upcoming appointment to the POTS Promised Land of Toledo, Ohio, to see the famed Dr. Blair Grubb, I had a feeding tube installed so that I could regain some of my weight and get nutrients for the trip. Dr. Grubb was very thorough and I left knowing even more about what was happening to me than ever. My family life and business life were still on a downturn, for obvious reasons, and money was becoming an added worry for our family.
V: Some Improvement
Continuing with the feeding tube, I slowly began to regain some of my strength and began slow physical therapy in August 2001. By the end of the year, I was able to slowly move around the house and work for short periods. I still could not ingest food orally and continued to have throat spasms that made me feel like I was choking. Before I knew it, I was taking 10mg of Ativan every day to help relax my throat muscles. While I was no longer bedridden, I still found myself mostly house ridden.
I also started learning more about Cervical Stenosis and how some patients with Dysautonomia found improvement through surgery, by having pressure on the cervical spine relieved. I was feeling optimistic about the future and the local newspaper even did a story on my situation (http://Eye-Q.com/news.asp), which probably became the first ever use of the words "autonomic nervous system" in any paper's business section.
In April of 2002, I followed the stories of several patients of Dr. Dan S. Heffez of the Chicago Institute of Neurosurgery and Neuroresearch, and decided to send my MRIs for his evaluation. On April 16th, I began a 2-day evaluation at CINN. While Dr. Heffez did not feel that my stenosis (compression of the spine) was as severe as many others he had seen, he sent me home with a custom fitted soft cervical collar and asked that I pay close attention to any changes in my symptoms. I found the collar to be a great help, with my neck and shoulder pain relieved. I was also able to begin sipping on soup broth and eventually began tasting pasta, mashed potatoes, scrambled eggs and even grits! I could supplement whatever I could eat with the feeding tube and began gaining weight back at a steady pace.
Six weeks after my evaluation at CINN, I called Dr. Heffez and requested a surgery date, which was to be June 6th (D-Day Anniversary!). The day before the procedure, Dr. Heffez called and suggested doing a bone harvest from my hip so that he would not have to use any metal, which would be stiffer and could put more pressure on the surrounding healthy discs. I agreed, knowing that my surgery would last longer and my recovery period would be extended and more painful.
Surgery lasted well over 5 hours but when I awoke, my hands and feet were warm for the first time in over a year and a half. I felt like I was hit by a truck, but knew I had made the right call. With a new found hope, and days and weeks of healing ahead, I am confident that I will improve and find relief from at least some of my remaining symptoms. While the anesthesia did a number on my digestive system, I am slowly gaining back some of my digestive functionality and can't wait to taste scrambled eggs again! Over the coming months, I will post my progress at http://Eye-Q.com/POTS/.
I know my business can wait, my wife and daughter are still by my side, and my health will continue to improve with time.
More Information:
http://www.CINN.orgThe Chicago Institute of Neurosurgery and Neuroresearch
http://Eye-Q.com/pots/My personal online medical journal
http://Eye-Q.com/news.aspMay 14th, 2002 article in the Richmond Times-Dispatch


Wish Upon a Star

By edriscoll, in Member Stories,

By Bethany
Welcome, thanks for taking the time to read my story. My name is Bethany, and I'm nineteen-years old.
As I look up at the night sky, I always pick out one star that I make mine and that is the star that I wish upon. My wishes are so varied...I wish that I could somehow keep in contact with my friends from high school, I wish that I could remember what it was like to run, I wish that I could do all of the small things that you never appreciate until they are gone, but most of all, I wish that I could make a difference in the world.
Right now I am working on making that last wish come true by studying to be a special education teacher and working with young children with disabilities. The best times I have are those I spend with "my kids," because they accept me just the way that I am. They are wonderful! I believe that there is nothing better in life than to make a child smile.
Medical conditions have pretty much been a part of my life since I was born, so the transition from "healthy" to "sick" was more of a gradual change than a major transition. As an infant, I was what is called a "near-miss" SIDS baby. SIDS stands for "sudden infant death syndrome," and as you can see, I survived (thank God) but not without much emergency resuscitation. I would sometimes stop breathing when I slept, and nobody has ever figured out why. You can imagine how scary this was for my parents. Fortunately, I "grew out" of that medical problem!

What I did not grow out of were the constant difficulties that I had with my bladder. After a zillion tests, I learned that I had something called a neurogenic bladder, which means that it just does not respond the way it's supposed to when full of urine. And get this, at the age of eleven, I was also diagnosed with lupus, a strange condition in which the body attacks itself as if it were a bad germ. My mother has the same problem.
Though I grew up with these challenges, there were not many things I couldn't do. That is, until my senior year of high school, when I developed mononucleosis, and the virus that caused it, Epstein Barr, continued to hang around for a long time. My body just broke down under the weight of it all, and I missed almost three months of school, completely removed from my friends, the activities I loved, and the excitement I should have felt during my last year of high school.
Returning to school after a long time was very difficult because everyone else had all of these special memories of senior year that I didn't have, and sometimes it felt like they had forgotten about me. I was very lucky to have a great group of friends, though. They didn't treat me any differently because I was sick, and they did their best to get me out of the house whenever I felt able.
When you take steroids for a long time, one of the things that happens is that you gain weight. I learned to ignore the stares and comments about my appearance, but they still hurt. I did learn during this time that once people understand why someone is different they often are able to accept those differences better.
During this year of being sick, one of my wishes came true. While my teachers at school questioned whether or not I would be able to graduate, I had been busy making plans for the next year. And guess what? I not only graduated from high school, I graduated fourth in my class and received a full tuition scholarship to Vanderbilt University.
Unfortunately, my medical litany did not end in high school. Right before college, I was diagnosed with fibromyalgia (a muscle pain disorder), chronic fatigue, Hashimoto's thyroiditis (an autoimmune disease where my body attacks my thyroid gland), sinus node tachycardia (my heart races without any reason that I can figure out), and neuropathy (a loss of sensation in my hands and feet).
All of these problems have made college life very difficult for me. I struggle to get my class work done, which leaves little time for a social life. I have not yet been on my first date, and sometimes I wonder if anyone will ever want to date someone with so many problems. But then I try to focus on today, right now, and the things I can control. I'm learning to be an advocate for myself and to speak up when I need to . . . not easy when you are painfully shy.
From the sounds of it, my medical problems seem to play a big part in my life, but that is actually far from the truth. They are a part of who I am, but I am so much more than a bunch of diagnoses. I still try to do all of the things that I enjoy, like listening to music, writing, working with children, and collecting frogs (even though I am actually terrified of the real ones).
It is not easy growing up with a chronic illness. But as a result of all my experiences, I have learned who my real friends are. I have become even closer to my mom, my best friend of all. And I have come to the realization that though I wish there were cures for my problems, I know that regardless, I am OK, and that when I wish upon a star, many of my wishes can still come true.
Update: Hooray, just finished my second year at Vanderbilt! On the medical front, my heart condition has officially been diagnosed as POTS (postural orthostatic tachycardia syndrome) which is related somehow to the Chronic fatigue syndrome. I've also acquired some new diagnoses involving an assortment of knee problems including arthritis and chondromalacia. Unfortunately, these require braces, PT and meds and may require surgery if the less invasive things don't work.
The new labels for my problems don�t really change anything, I am still me no matter what diagnosis they place on it and my life continues on no matter what. It is more a comfort knowing that there is a name/names for what is going on and that someone believes me...there is nothing worse than doctors that refuse to listen or say it's all in my head. As far as I am concerned, the labels are just convenient ways for doctors to share information on medical conditions...I am not a lupus, a fibromyalgia, a POTS, an insulin resistance, an arthritis. I am a person with lupus, a person with fibromyalgia, a person with POTS, etc and they are only a small part of who I am. I wish people could see past their symptoms, the differences, and see all of the similarities between them and me. Perhaps I may never be able to run or jump, to be a perfect size 8, or to fit the image of "normal" but I am myself and right now that seems to me to be a pretty good person to be.

By Kate
May 2002
I am a 30 something fit female who is a nonsmoker. My father had low blood pressure but no symptoms. When I was in my early 20s, I worked and exercised but sometimes (about once a year) would have strange symptoms of getting dizzy, feeling faint and seeing stars. It was just always hanging over my head, plus I have always been shaky in the morning upon rising... I thought it was iron deficiency and took a multi-vitamin with iron and was always surprised that my blood work showed up fine. Doctors have always been impressed with my rather low blood pressure, convincing me it was a good thing. I thought so too...

In November 2001, I came down with a nasty flu virus which left me with asthma. For 3 1/2 months I had to stay at home while recovering (believe me, not breathing well is a very scary thing) and had to use inhaled corticosteroids. Sometimes the corticosteroids made my heart rate fast, so you can imagine how surprised I was when, after getting and staying off the medicine once I was cured, the occasional fast heart rate continued. 

I did not take my heart rate very often prior to that, except while resting. It has always been between 60 and 65 bpm at rest. However, now it is especially bad in the morning when I stand up - unless I have a tall glass of water before rising, it goes to 120 bpm just from standing! And to think that I am an otherwise healthy and thin martial artist! 
I contacted a cardiologist via the internet (yes, I know it's not the ideal situation, but I had so many doctor visits while suffering from asthma that I really needed a reprieve from those doctor's appointments!) To make a long story short, the online cardiologist informed me that, if my heart was ok, it sounded like I was experiencing low blood pressure symptoms. 
I did more research on the Internet and came across this POTS website, which has been a blessing to me because I have all of the symptoms of POTS!!! Bending over makes me dizzy, raising my arms over my head might make my heart rate fast, and standing up in the morning or standing up from a chair too fast are very bad news!!! At the moment, I am trying to get off coffee and seem to have things under better control as I have been drinking lots of water and consuming salt. The tall glass of water does seem to be an immediate solution whenever I forget to stand up slowly. Of course, the day does get better as you progress, but from now on, I will be sure to carry a very large bottled water with me wherever I go...


Sandra's Story

By edriscoll, in Member Stories,

By Sandra 
September 2001
It all started at the end of January 1999 for me. I was 55 years old. I had been working at a University for 25 years. Two of the students that worked for me came to work sick. The virus soon spread to almost everyone in our office. I was the only one that suffered permanent nerve damage. I had vomiting and diarrhea and cold-like symptoms. I lost 14 lbs. in two days. I live alone and had trouble standing long enough to get food for myself. I did not want anyone else to come in to help me and be exposed to this also. My brother would leave Seven up and Gatorade by my door so I could try to keep from getting dehydrated. I was taken to the emergency room four times and they kept giving me fluids. I was in the hospital twice - the second time for 2 1/2 weeks. I did not get any better. I was going 10 days without a bowel movement even with heavy laxatives. (I still have to take laxatives, and my life revolves around when they will work). I could not eat and was loosing weight fast. I lost a total of 55 lbs. I have since gained some of that back. I spent 4 1/2 months bedridden.
My blood pressure on standing dropped to 23/14. Several times I felt as if I was going to die. I also have trouble with dry mouth and throat, which is part of the autonomic problems.

I passed out 5 times in the beginning. I would still pass out today if I didn't carry a little stool with me everywhere. I am not able to function at all without proAmitine and florinef. It is a struggle to do anything when I am upright, as I have to sit every few minutes. I had to give up my job and I had only 2 more years until early retirement. I had to move out of state, as I need the assistance of my family. I can no longer drive. I was fortunate enough to be able to go to the Mayo Clinic and was in a study for midodrine (proAmitine). Since my nerve damage is permanent (the virus attacked the nerves) I am at the mercy of researchers to find a cure.
I think it is important for people with dysautonomia to not give up hope. Even though everything becomes an effort - make that effort. I have made new friends since this, found love, and started a new hobby (making jewelry). I try to help other people as much as possible. You can always find someone that is worse off that you! If life hands you a lemon - make lemonade!


One of the Lucky Ones

By edriscoll, in Member Stories,

By Michelle Sawicki
August 2001 
I was living a pretty normal life at the age of 27. I was married and had one child. My husband and I got along well. We were saving to buy a house in the country. Life was good and we felt blessed. And then I came down with a mysterious illness....
It started with sharp stabbing chest pain in January 1999. The pain came and went unpredictably for about a week and a half. I finally decided to see my doctor. He did a quick exam and said he thought I�d pulled a muscle. He prescribed a pain reliever and sent me home.
Then I developed tingling in my upper lip and fingers. Sometimes the top of my right leg felt numb. Sometimes my fingers felt numb. I thought it was strange, but not strange enough to go back to the doctor's office. 
I was hit full-blown by this mystery illness all in one day. It happened on February 10, 1999. 
I was feeling "wired" on that day. I did not have an appetite, and I was thirstier than normal. I was washing windows when I suddenly felt as if I could not breathe. Then I had a strong sensation to cough. My heart began to pound fast and hard within my chest. I decided to lie down. My heart stopped pounding, but it was still beating way too fast. Within a few minutes I was extremely nauseous. I also became very shaky. I felt terribly sick. It was the day a mysterious illness changed my life.

I spent the night in the emergency room. My heart rate was recorded at 150 beats per minute while I was lying down. An EKG revealed sinus tachycardia with ST and T wave abnormalities. My blood pressure was elevated at 140/75. I had a slight fever. Blood tests revealed some minor abnormalities. The ER doctor inferred little from these tests. I was sent home and advised to see a cardiologist.
I was lucky enough to be able to get an appointment for an echocardiogram at a cardiologist's office the next day. The echocardiogram revealed that I had mild mitral valve prolapse. I was prescribed a beta-blocker and sent home.
I spent the next month and a half bedridden. I was incredibly and completely exhausted. Slight minor movements sent my heart into tachycardia and exhausted me further. For instance, if I was lying in bed and just reached over to pick up a glass off the nightstand, I would feel extremely weak from the effort and my heart would race.
My body began to do some bizarre things during this time. Besides the constant fatigue, I was extremely thirsty. I could not drink enough water to quench my thirst. I craved and drank only water. I also completely lost my appetite and developed an aversion to sugar. My menstrual cycle became irregular. I experienced shooting pain down my left arm many times each day. It was a "funny bone" type nerve pain feeling. In addition to this, I experienced electric-like sensations in my chest many times each day.
I also experienced muscle cramps in my arms and legs everyday. The pinkie and ring fingers on my left hand tingled and felt slightly numb. At times I could not tell if water was hot or cold when I touched it with my fingers. My hands, feet and nose were always very cold. 
I lay in bed, day after day, knowing that something had seriously gone wrong within me. I also knew that my doctor was not helping me. I decided to see another doctor. This doctor was concerned about my declining health. He had me wear a heart monitor for the next 48 hours.
The heart monitor began to beep before I even got out of his office. It continued to go off almost every time I stood up. My heart seemed to be beating fine as long as I was lying down. Since I felt incredibly weak, I was lying down most of the time. Getting out of bed to use the bathroom was a major feat.
A few days later I returned to the new doctor's office to get the heart monitor results. The doctor told me that my heart was going into ST-segment depression and that this could lead to a heart attack. 
I brought the heart monitor results to my regular doctor the following morning. He could no longer deny that something was wrong with me. He set up an appointment for me to see yet another cardiologist. This doctor diagnosed me with supraventricular tachycardia and scheduled a stress test.
I took the stress test a few weeks later. The results were completely normal. Of course, I was very happy that they were. And yet, I knew these doctors were missing something. For one thing, I still suffered from overwhelming fatigue. I felt a little stronger each day, yet the majority of these days were spent lying down. I just did not feel "normal". I still had this incredible need to constantly drink water. I had spells of tachycardia everyday. My fingers still tingled and felt numb. My chest still felt as if it were burning. I often felt "wired". I had become highly sensitive to chemicals. I could not stand strong smells, especially perfumes. Nor could I stand bright lights or loud noises. I woke up each morning with my heart racing. My muscles twitched a lot. Sometimes I was short of breath. I experienced frequent nausea. I didn't sweat anymore. My temperature was often low. Some days I just could not warm up - even huddled under blankets. And while I often felt cold, I discovered I could no longer tolerate heat. A hot bath or room caused my heart to go into tachycardia. Even splashing hot water onto my face caused my heart to beat too fast. Some days I felt famished, others I had to remind myself to eat. I noticeably lost weight. Black dots frequently clouded my vision. I grayed out for a few seconds at a time. I would have to sit down very quickly when I grayed out because I felt lightheaded and faint.
It seemed everything in my body was failing all at once. People kept asking me what was wrong. Inevitably, I told them a few of the bizarre symptoms I was experiencing. I never even got close to telling them all. Who would have believed me? Who would have believed that so many things could have gone wrong inside of me all at once?
By now I had come to accept that my doctor and the cardiologists did not know what was wrong with me. I knew that whatever I had was rare. And so, I stepped off of the doctor carousel and began my own search on the Internet. I eventually came across a web site about a disorder called postural orthostatic tachycardia syndrome. I had many of the symptoms listed for this disorder and sought to find more information.
I contacted the National Dysautonomia Research Foundation and learned so much from the founders, Linda and Dan Smith. They helped me find a dysautonomia specialist who gave an explanation for my mysterious illness. Eight months after the onset of symptoms I was officially "diagnosed" with orthostatic intolerance.
It took about a year, but with lots of prayers and a modified lifestyle, I slowly began to recover from POTS. I am now able to work again. I feel vibrant and full of life again. 
Some patients with POTS don't ever improve, but I did. I am grateful for the many prayers and support I received. I know that I am one of the lucky ones. 
*Never stop searching for answers, never give up hope*
Update: In 2003 the mystery surrounding my development of POTS was solved. I was diagnosed with Classical Type Ehlers-Danlos syndrome. People with Ehlers-Danlos syndrome (EDS) are born with abnormal connective tissue, which basically is the "glue" that holds your body together. Some people with EDS experience excessive amounts of blood pooling in the lower limbs when they stand because their blood vessels are too stretchy. This results in certain areas of the body being filled with too much blood while other areas have too little. The sympathetic nervous system kicks into overdrive in an effort to regulate blood disbursement.
There is no cure for EDS or POTS, but I am doing extremely well. While my POTS is obviously genetically based, I am living proof that one can become extremely ill from a genetically based illness and then experience a remarkable recovery. Research has shown that there are a magnitude of situations which can exacerbate POTS symptoms. At the time I became ill I was eating a low salt diet, not staying well hydrated, taking herbal supplements which may have had vasodilating effects, I wasn't exercising, and I may have been recovering from a common cold or flu virus. I believe these factors probably led to my body no longer being able to adjust to the challenges of faulty collagen. Over time, my body regained the ability to better adjust to the challenges of pooling blood. I now also know what helps POTS symptoms and what to avoid, which helps greatly. I shared those things when I created this website. It is now 2010, and I am doing great! I wish you all good health.


Julie's Story

By edriscoll, in Member Stories,

By Julie Tremp
April 2002 
My name is Julie Tremp and I have been diagnosed with POTS.  I was diagnosed by Dr. Blair Grubb from the Medical College of Ohio in Toledo, Ohio.  I think the worst of it started in December 2000, although I believe I had symptoms in a milder form for several years prior to that.  
I know I was exposed to some chemical fumes at my place of employment in 1990.  I developed tachycardia, which was very difficult to deal with. 
I also had symptoms before in 1982, six months after my son was born. I was then diagnosed with mitral valve prolapse.  Since then, three other cardiologists have said I do not have mitral valve prolapse.  The tachycardia was brief in 1982.  Beta Blockers proved to be too strong for me at that time.
In 1990 however, beta blockers (inderal) were needed to control the rapid heart rates.  I also had a milder form of fatigue in addition to a balance problem.  The only thing that continued was the tachycardia---but the beta blockers worked for that and eventually I was able to lower the dose from 60mgs to 30 mgs a day.  I lived a pretty normal life until December of 2000; then the Bomb hit.  

It all started on December 5th after a dental appointment.  I had been having digestive problems for many years, but as I got closer to December they got much more severe. 

A week before my appointment, I was more anxious then I have ever been.  I've never been afraid to go to the dentist.  I was getting an impacted tooth pulled though. But I had had this done with my wisdom teeth without problems.  I felt like the anxiety was not in my control.  Still, I hung in there and had the impacted tooth pulled.  That is when everything started---the worst of it anyway. 

I developed tachycardia that night and went to the ER.  They sent me home with a diagnosis of sinus tachycardia.  Big deal, I knew I had that.  For four days I experienced severe panic attack like symptoms.  I had tremors constantly.  It became more and more difficult to eat.  I guess for about the first month or so I felt like the adrenaline was in constant flow.  I went to the emergency room several times.  One of the ER doctors gave me Ativan for anxiety.  I heard this drug was addictive, so I was careful to take it only when I was extremely bad.  As time went on, I lost around 25 pounds and became very weak.  The anxiety seemed to calm a little and the tachycardia was controlled by an increase of the Inderal.

However, the fatigue became severe and I developed low grade fevers which lasted about four months.  I was bedridden for about 4 weeks and lost my job as an office manager because of it.  My management duties had been impossible to keep up with.  I tried to go back to work in April but was replaced by someone else.  They offered me another position, but I knew I was too weak to continue.  They laid me off so I could receive unemployment. 

Everything was so crazy with my body.  I couldn't go to a store without losing my balance.  The floor felt as if it were moving under me.  I became sensitive to chemicals----especially cleaning fluids. I had been continuously exposed to fumes where I was employed.  They consisted of fumes from ink towel toxins and other junk, like fuel and oil.  I'm sure all of this aggravated things further.  
I slowly improved from April on.  I did not get diagnosed by Dr. Grubb until June of 2001 .  I had previously gone to many doctors ( Gastro, Neuro, Psyc, Internal, Cardio ) and was told many times that I needed psychological help.  Ironically,  the only one that believed I was ill was the psychologist.  None of my friends believed me and I lost many of them, but my family stuck by me and realized that something was really wrong.  Now, I have made many new friends.  It is now April 26, 2002 and I have a somewhat normal life on Wellbutrin, Inderal and Synthroid.  
I have had neck problems since a car accident in 1977, after hitting my head on the windshield.  I have noticed numbness and tingling in my arms and more difficulty in swallowing in recent months.  I have also developed some numbness in my lower legs.  An MRI has shown a bulging disk on C5 and C6. My MRIs are in the process of being sent to a neurosurgeon, DR. Heffez, in Chicago.  So off I go to another adventure.
December 2002 update: 
On May 14 and 15th of 2002 I went to Chicago to see Dr. Dan Heffez for testing. After all the testing, Dr. Heffez gave me the results. I remember one thing very clearly - he said, "you have a very bad neck - very bad". I really did not expect that at all.  Really - I was shocked! 

I'll tell you why. When I got into a car wreck in 1977 I never got the proper treatment. I think I must have brought up my neck pain to probably 5 different doctors over the years.  ALL THOUGHT IT WAS TENSION--You know--ANXIETY! (I must have had some HORRIBLE medical file following me for years - could have dated back to my childhood). So, through all these years I learned to live with it, and I became used to it. I thought maybe I was overreacting and was imagining the pain. I'd never connected it to the autonomic nervous system problems I was having. But as I looked back, it all started to make more sense. 
Dr. Heffez diagnosed me with two herniated disks on C5, C6 and C7. In addition, he diagnosed cervical stenosis, which I was born with. He also diagnosed a mild chiari malformation. I failed most all of the neurological testing. My cervical spine had severe pressure on it and was now also causing increasing numbness in my legs and arms. 

A normal space for the spine is 16mm to 20mm. I HAD LESS THAN 5MM – VERY SEVERE. Dr Heffez told me I needed surgery very soon. He said a mild fender bender causing any kind of whiplash could paralyze me from the neck down. He said it was a tragedy that I’d gone so long with such a bad neck. 
I believe that with such pressure on my spine, my body was not able to metabolize the chemicals I was exposed to at my old employer. My theory is that spinal stenosis plus chemical exposure could equal POTS.

I had surgery June 27, 2002.  The surgery took 4 1/2 hours. Dr. Heffez replaced the herniated disks with donor bone, fused 5,6, and 7 together, and added a titanium plate. It was quite rough coming out of the anesthesia, but after 18 hours or so, I was through the worst of it.  
Right after the surgery I was already showing improvement.  My hands and feet were warm. Most of the numbness was gone 2 weeks after surgery. I started to show improvement in some of my POTS symptoms - especially the poor balance.

My POTS symptoms are definitely milder now, and hopefully that will continue as time moves on.  My 3-month x-rays came back good. I do have considerable pain in my neck area, which I think is due to the bones fusing. It is so difficult to tell because my perception of pain is off due to going so long with it because the doctors would not take me seriously. Still, as of 12-02-02, I am healing and doing a world better than in December, two years ago.


Dave's Story

By edriscoll, in Member Stories,

By Dave
August 2001

POTS became my reality while I was finishing my last degree in college.  I would categorize the onset as sudden and slow. My first symptom was the inability to engage in normal fitness training.  I was heavily involved in triathlon sports and weight lifting.  Running became the first activity I was unable to perform.  Later, as the syndrome progressed, I developed several unusual symptoms:  numbness, increased and decreased sweating, inability to concentrate, fatigue, flushing after large meals/heat and difficulty with standing/walking.

Months later my doctor diagnosed me with an active mono infection.  This was a relief to me because it was a diagnosis I understood and felt I would recover from.  I rested  and assumed symptoms would abate.  Unfortunately they did not and things got worse.  My method of coping was to pretend I wasn't experiencing it.  I did not share what I was going through with my family or friends.

It quickly became something I could no longer ignore, and I began to get scared.  The doctor put me through a number of tests and procedures to check for a multitude of ailments.  He soon exhausted his knowledge base and began the typical suggestions that maybe it was all anxiety/depression.  I think this is when POTS became my biggest mental challenge.  I began to doubt my gut instincts that told me it was not just chronic fatigue or anxiety/depression. 

Anxiety was difficult to dispute because I was constantly anxious about what was happening to me and loosing my job.  Depression was also a reality, as I was mourning the life I once had and feeling mighty sorry for myself.  At this point, I knew I was going to have to find the diagnosis on my own.  A month or so after researching at the library I finally came across POTS and knew it was a perfect fit.

I learned to avoid the "crazy" diagnosis by leaving out some of the more unusual symptoms and reporting only major symptoms.  I brought in self-documented tachycardia responses to both sitting and standing  to a cardiologist.  I also brought in various research articles I found on POTS and pleaded for him to do a tilt table test.  He agreed with some arm-twisting and the diagnosis became official about a year or so after symptom onset.

I did not respond well to medications.  Side effects were too much for me at that point.  I researched and tried every herb I thought might be useful.  I eventually used only salt supplementation, exercise, and a majorly modified lifestyle.  I had to completely adjust at work by using a rolling stool and sitting for most of the time just to be able to get through the day.  At the end of each day, I felt like I had run a marathon.

I find exercise and salt supplementation to be most beneficial.  The muscular development of my body has given me back more orthostatic tolerance and energy than any drug has.  Exercise intolerance is very real for me, but I have learned how to adjust so I could workout, bike and swim again.  Discovering where the fatigue wall is with exercise has also been important.  There have been times, when I was bedridden, that I really needed to push beyond that wall to get back some orthostatic tolerance

Diet also seems to be very effective for me.  I have stopped eating sugar, yeasts, wheat, and dairy, which has maximized my energy and decreased bowel problems.  Grazing throughout the day instead of eating large meals has also helped.  My philosophy has always been to give my body the best environment to heal itself... be that with meditation, exercise, or diet.

I have learned many lessons the hard way, as there was not a lot of research on POTS at that time.  I also did not have a doctor who knew enough to instruct me on what to do or how to do things.  Finding the NDRF was one of the most helpful things for me.  It had others who were going through the same challenges, and I found good advice on how to manage the illness.  Support and learning about various medications and tricks are some of the most valuable tools you have to deal with this disorder.  I think a competent doctor who specializes in autonomic disorders is probably a better asset.  However, I have never had access to one of those doctors.

I don't think I will ever know what caused  my POTS onset.  In addition to mono, I also had a neck injury and was under a great deal of stress both personally and professionally.  I have been lucky enough to have a year or so of a remission when I returned to my old lifestyle.  The pushing of my body mentally and physically, I believe, brought a return of POTS.  So, I have learned to surrender to my new life and look for the warning signs that I am overdoing.   

Today I am about to return to work after another neck injury and huge exacerbation of POTS.  I know great improvement is possible, as I have had it in the past and know others who are greatly improved.  Although I don't think there are any magic answers,  I know I have learned so many lessons from having POTS and it has made me a stronger individual.  In the words of MLK:  "The ultimate measure of a man is not where he stands at times of comfort and convenience but where he stands during times of challenge and controversy."

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