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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. 

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Member Stories


edriscoll
read the Featured Member story of Kelsey Boncato  Watch the video, hear the music
"Ain't Over" , performed by Idesia, lyrics by Daniel Oldham
Those quiet tries, they mean something
Those tired eyes, they're worth something
And those grey skies, not fooled by no false pride, sweet lies
Always on our feet while we're still breathing
Ain't gonna retreat, this fight is freein’
Looking for belief are you?
That dream I told ya, ain't ever over
This world don't own us,
This dream ain’t over
Those hollow sighs, they help somehow
Those absent cries, they're heard somewhere
And those high times love ‘em
Lost as soon as they're found, lost as soon as they’re found,
No blind circumstance or lucky break
This life we'll make, no one can take
That dream I told ya, ain't ever over
This world don't own us,
This dream ain’t over
 

edriscoll
My name is April, and I was diagnosed with inappropriate sinus tachycardia (IST) almost two years ago. I was 19, turning 20, when I found out what I had.  I was a pretty normal kid until one single day and one single moment that changed my life forever.

I was working two jobs and going to school full time. I was studying to be a nurse, waiting tables, and working at a local nursing home. I had just gotten engaged to my high school sweetheart of four years. Life was at an all-time high for me. Then it happened; I was waiting tables when I started to feel extremely uneasy, and then my hands started to shake uncontrollably. I thought maybe my sugar was just low, so I drank some OJ with added sugar. I just could not shake that feeling, so I thought maybe some fresh air would do me good. I stepped outside, and almost all at once I felt it; my heart was beating so fast that I thought it was going to beat right out of my chest.

I alerted my manger about what was going on, and he led me inside where he took my pulse. His eyes got wide, and he said that it was 190 beats per minute. He asked if it was okay to call an ambulance. I said "no," thinking it would just pass.
Almost an hour later, I had him call my fiancé who took me to the hospital. My heart rate was 190 beats per minute, and it took them almost 3 hours to bring it down with medication to 100-120 beats per minute.

The next day, I went to see a cardiologist who referred me to an EP doctor. He did a tilt table test, and from what he found, it was IST. I was so frightened when he told me.
I left and went to another doctor. He, unfortunately, did not even believe in any type of dysautonomia. At this point, I was forced to quit nursing school and leave my jobs. I spent all my days sleeping on the couch. I had no energy to even move.

I kept fighting and made my way the Cleveland Clinic in Ohio. The doctor I saw there ran tons of tests and said the same thing my original doctor had said, IST.
Now, my symptoms have grown and became much worse. I'm going to go back to the first doctor that I saw in hopes for better answers. This is where I stand now with everything - lost and confused, hoping for just a part of my life back. I have tried every medication in the book, but nothing seems to help me. Shortly after getting sick, I had to have my gallbladder taken out. For some unknown reason, it became very sick and was not functioning at all.

I suffer from the same symptoms as others on DINET: constant nausea, dizziness, palpations, chest pain, fatigue, tremors, trouble sleeping, trouble breathing, and many more symptoms that come and go.

I've learned to enjoy the small things in life, and when I have one of my very rare good days, I surround myself with friends and family and enjoy every moment of it. Without the love of them and my mom pushing me to keep going, I might have given up a long time ago. This condition is hard to live with and hard to explain to others. They don't understand it or even believe it's as bad as I say.  

Don't ever give up the fight, guys. Enjoy the small moments.
Thank you for reading my story.

edriscoll

It’s All in Your Head

By edriscoll, in Member Stories,

by Jordan Relph
Hi guys! My name is Jordan Relph, and I’m 13 years old.
It all started February 25th, 2009. I got the flu and had a fever of 102.7. I was very sick. The second week, I tried to go back to school, but my mom came to pick me up because I could not stop coughing. After that, I slept a ton. I would wake up at 11:00 AM and eat; then I would go back to sleep. I would wake back up around 7:00 and eat and then go back to bed. My pediatrician diagnosed me with mono and told me to get lots of sleep. He said that I got mono because I was still recovering from pneumonia and the flu.
Two weeks later, my pediatrician said that I had CMV, a cousin of mono. I kept sleeping almost all day and night. Finally, I went back to school on March 23 but fainted during mass (I go to St. Thomas) and had to be brought home in a wheelchair. That night, I was at the hospital with paralysis. I was completely unable to move and was fed, bathed, and helped to the bathroom by my mother, friends, and family. The next day, we left the hospital because the doctors weren’t doing anything to help me besides the CT scan.


 
I stayed at home the next few days and was continually visited by loving friends and family. Then I was at Via Christi for five days. I was catheterized even though I had a history of kidney reflux. All the doctors kept saying that this was an anxiety problem and that it was all in my head. The only people who stood up for me were the psychologist, psychiatrist, and my family, of course. While there, I had an MRI, spinal tap, bloodwork, EKG, and psych testing. All were normal. Therefore, the doctors assumed it was mental since they could not figure it out.

My friend’s stepfather, who is the best heart doctor in Wichita, read my EKG and said that it was abnormal when the other doctors had said it was perfectly fine. The psychiatrist told us to stop the amitriptyline, which was given to me for migraines. She said that it was not approved for children and that my pediatrician should NOT have put me on it. She also said that when combined with Tussin DM and other meds that I was on, it could cause paralysis.
 

Five days after I stopped the amitriptyline, I was able walk!!! Then, we went to Children’s Mercy in KC. They were not helpful at all, and it was a complete waste of time. Throughout the summer, I had six urinary tract infections and was very sick. This was believed to have been caused by the catheter, which should never have been used for me.

I started to recover and was playing basketball again. On Labor Day, my brother came home from KU and gave me the swine flu. Also on Labor Day, I had a bad four-wheeler accident. Then, on October 8, I was given Lexapro for migraines. Three days later, I could not walk. I was immediately taken off the medicine. I started having fainting spells and weakness. I was also having stomach pains and nausea. My new pediatrician suggested that I have a mid morning and afternoon snack to help with the migraines and fainting. When I was on my period, I fainted over thirty times at school. My school kicked me out because they said I was a distraction.

I have been to five neurologists, but finally I found the right one. My new doctor spent seven hours with me and ran multiple tests. He diagnosed me with a collagen disorder, POTS, migraines, and vasovagal syncope. He was amazing. I am currently being tested for diabetes, lupus, and other diseases.

I am so glad that they finally figured out what I have. Finally I can say that I do not have a mental problem.  Hopefully the school will be more lenient now that they know it’s a medical problem and not psychological.

edriscoll
By Dianne
July 2010
 
I was diagnosed with cardioneurogenic syncope in late 2008 based on the post-exercise collapse of my blood pressure. I waited many years for my illness to be named. I was 14 or 15 when I first noticed that I didn’t have the stamina of my friends, and I was 43 when I was diagnosed. I’m not sure whether my cardiologist and neurologist placed me in the right spot on the spectrum of dysautonomia, but I’m satisfied that I sit somewhere on the spectrum.

Being ill without good reason over a long period of time was physically, emotionally, and professionally devastating. Without a diagnosis, there had been no prognosis, no treatment, no way of knowing how best I could manage my symptoms or prevent exacerbations of my illness, no support group, and no capacity to plan my life or to know how long I would live or work.


 

My Experience of Dysautonomia

Over decades, my symptoms had been attributed to a range of different causes. At 18-19 years, as a trainee nurse, I thought my general debilitation was due to back injuries and shift work. In my early twenties, when I was no longer a nurse, my ongoing symptoms were thought to be caused by food intolerance. In my mid-twenties, I was very sick after a trip to India, and it was attributed to allergies or a mystery bug. In my mid-thirties, it was thought my ongoing ill health was caused by a broad grain allergy; in my late thirties, it was thought that I’d had pericarditis and maybe mild lupus. Even now, it is unclear whether I had a succession of different illnesses or just one that was progressing or undergoing periodic exacerbation.

My symptoms didn’t seem to provide doctors with any clear direction. In the early days, fatigue was my constant symptom, varying only in severity. Other symptoms would come and go including nausea, night sweats, gut, heart, and respiratory symptoms, chest discomfort, small seizures, panic disorder, neck pain and soreness at the back of my head, exercise intolerance and post-exercise collapse, and problems with my speech.

For around five years in my mid-thirties, I had two cycles of anemia of chronic disease every year. Although the cause was uncertain, I recovered each time with 2-3 weeks of bedrest, and it became clear that I was much sicker. My iron fell more quickly the more physically active I was.
It was around this time that I began collapsing 1-1 ½ hours after exercise. I was not passing out but slumping over, unable to get up for five minutes or so, then being overwhelmed with the need to sleep. For a number of years I refused to give up exercise. Two or three times a week I would walk around the lake or work out at the gym, rush home and wait for my collapse, then sleep for several hours. At forty, I was too sick to continue exercising.

Managing My Illness

From that point on, I used physical inactivity and bedrest to manage my illness. My only other tool back then was ibuprofen, which I took in a small dose at bedtime to stop my night sweats. Even with these few tools, I was better able to manage my illness, although periodically I would still have exacerbations brought on usually by overwork, physical activity (e.g. moving house), or lack of rest.

Sometimes I would trade an exacerbation for overwork, confident that I’d recover with 2-3 weeks of bedrest afterward. I no longer do this, having struggled to recover from an exacerbation in 2008. After overworking for just six weeks, all of my symptoms worsened as expected, but this time I developed a succession of infections (tooth abscess, sinusitis, laryngitis, conjunctivitis, tonsillitis). For the first time, I failed to recover with bedrest. My nighttime respiratory symptoms recurred, and I became periodically incontinent. My recovery since then has been very slow.

My focus now is on preventing exacerbations of my illness, as well as on daily management.
I’ve never done well on medications. At diagnosis, my cardiologist wrote me a prescription for three drugs she thought might be helpful: Rythmodan, which I couldn’t take because of an allergy to the maize starch filler, Aropax, which left me semiconscious even at a quarter dose, and Inderal, which amplified the effects of my illness.

I’ve gone downhill on IV vitamin C, which my doctor was certain would give me a boost. Two successive courses of iron injections in my mid-thirties coincided with a dramatic decline in my health from which I never fully recovered. Additionally, I became very sick very quickly when a doctor tried treating me for mild lupus (with an antimalarial).
I was lucky enough to find a review article by Dr. Blair Grubb[1] which provided information on non-drug approaches to managing dysautonomia. If anyone sees Dr. Grubb, please give him my thanks and best wishes, and tell him an Australian woman is grateful for his work. In case it is helpful to anyone, I’ve listed below the approaches that have worked well for me.
I’ve also tested every possible alternative therapy. I can honestly say that I’ve had benefit only from meditation (for relaxation), cranial osteopathy for musculoskeletal problems, and simple treatments for nausea.

Symptom Management
 
Fatigue: General management of my illness helps to minimize fatigue. I reduce fatigue by getting plenty of sleep and rest as well as prevention and treatment of my other symptoms. Laying flat also eases most of my symptoms, particularly fatigue. Other approaches I’ve found effective include:
·        Fluid intake – Drinking fluids helps. I have little or no thirst, so I find it a chore. I always thought that the need for fluids was exaggerated. At first, trying to increase my fluid intake, I would drink 1.5 liters through the morning and then think ‘phew, I’m done.’ It became clear that I was feeling well in the morning but really fatigued for the rest of the day. To someone who feels thirst, it makes sense to space out fluids; I was really slow to work that out. Now I have a glass of water on rising and another at 9 AM, 12 noon, 3 PM, 6 PM, and around 8 PM.
·        Diet – Salt really does help. I salt my food and, if I’m particularly fatigued, a salt tablet or salty snack is often helpful. Also, I’m not fanatical about it, but I generally don’t eat big carbohydrate-based meals of pasta, rice, bread, or potatoes. I’ve only heard of a couple of other people with dysautonomia feeling more fatigued after eating carbohydrates,[2] but it’s also the case for me.
·        Compression hose – Wearing compression hose stops blood from settling in the legs on standing. I use Venosan stockings. They don’t give maximum compression, but I can wear them to work without looking weird. They are expensive and hard to get on, but I’m more fatigued without them.
·        Physical inactivity – I always felt fabulous when I was exercising but much more fatigued afterwards, particularly when I started collapsing. My fatigue increased if I persisted with exercise, and my cardiac symptoms worsened (chest pain, irregular heart beat). I avoid exercise now and rest often. I also have two month-long breaks every year to rest.

Night sweats: On the advice of an immunologist, in my late-thirties I started taking a small dose of infant ibuprofen at bedtime. This stopped the night sweats and gave me better, unbroken sleep. After many years, my night sweats stopped about a year ago, so I stopped the medication.

Soreness at the back of the head and neck pain: When my illness is very active, I get a deep soreness at the back of my head and neck pain that makes it hard to turn my head. These symptoms are easily treated, and I feel much less fatigued without them. My osteopath can fix the neck pain but not the soreness at the back of my head; my neurological physiotherapist can fix both.  This year I’ve been seeing both therapists every 1-2 months to try to deal with these symptoms early and prevent them from occurring.

Respiratory symptoms and chest discomfort: At my sickest, I woke at night gasping as though my body had forgotten to take a breath. At other times, it’s felt as though the muscles at the back of my throat have collapsed, blocking my airway. For years I expected to suffocate in my sleep. I can also feel as though I’m not getting enough oxygen, as though my lungs aren’t expanding or I’m trying to suck oxygen out of a thick fog.
During my last exacerbation, my general practitioner tried treating me with Lexapro; it gave me insomnia, stomach pain, and tinnitus, even at a quarter dose, but it quickly and effectively relieved my respiratory symptoms. (I managed to take it for around six weeks.) My respiratory symptoms are also eased by lying flat.
These symptoms are accompanied by chest discomfort and sometimes a mild sensation of choking; it’s as though someone has stuck a garden hose in my chest and overfilled my chest cavity. During one exacerbation of my illness, an echocardiogram showed a bit too much fluid around my heart, but it is unclear whether this was at all relevant. The chest discomfort is also relieved by Lexapro (and lying flat).

Nausea: I’ve found ginger helps. (I buy ginger chews at my health food shop.)  I’ve also found help from peppermint oil (smelling it). It helps to eat small amounts often. My physiotherapist can also relieve this symptom by working the thoracic area of my back (around T12).

Things I haven’t worked out: The sicker I am, the more difficulty I have with my speech. I have problems with word-finding and slurring; sometimes I put the wrong words in sentences, and sometimes I structure my sentences as though English is my second language.  I’ve only had panic attacks when trying to speak. I think I’ve tried everything to fix it; nothing has worked.
My bladder symptoms resolved slowly after my last exacerbation. I don’t know why; these symptoms were unexpected, and I thought they’d be permanent.

Small seizures came and went without explanation over an 18-month period in my early forties.

Sometimes my heart rate is irregular, irrespective of how well I manage my illness, and this increases fatigue. If my heart races for whatever reason, sometimes my heart rate stays up for hours.  My brain doesn’t send the message that it’s time to slow down, and I haven’t yet found a way to settle it myself.

My gut doesn’t work well. I no longer expect it to.

I haven’t yet found a form of exercise that I tolerate.

Flying aggravates my illness; I don’t know why or how to fix it.

I’m cheerful, even when I’m very sick. I can feel sadness but not joylessness. Am I physically incapable of depression?

Finally
 
I used to dream of a diagnosis that would lead to a cure. Then, I’d live a full life. I’d get fit, climb mountains. Instead, I find myself climbing the same mountain I always have - just no longer blindfolded and alone. My illness still challenges me every day. It seems to have progressed, but a diagnosis has meant that I can now help myself. I can now optimize my functioning by preventing, managing, and treating my symptoms. I now have access to scientific literature that is relevant. Importantly, I now have access to other people’s ‘stories.’  These have been an important source of comfort, information, and support. I want to thank everyone who has taken the time to share their story. I’m really pleased to finally share mine.
 

[1] Grubb BP (2005). Neurocardiogenic syncope and related disorders of orthostatic intolerance. Circulation, 111:2997-3006.
[2] See the story of K Webster (2008) and the case study of Michael Rocinante, Living with autonomic failure, published in Clin Auton Res (2008) 18:48-51.

edriscoll

My Personal POTS Story

By edriscoll, in Member Stories,

By Rita
August 2010
 
I am a 31-year-old female and became sick with Postural Orthostatic Tachycardia Syndrome at the age of 25. It took me 9 months of suffering before I finally found a doctor who was able to not only BELIEVE that I was sick, but actually know what was wrong and treat me!

I have always been a runner. I have a PR of 19:20 for the 5k and 2:30 for the 800 meters. Anyway, I was 25 years old and running a speed workout on a hot Saturday morning in June. My 25th birthday was just weeks away, and I was running some 400-meter intervals. I noticed that during my cool-down jog, I felt sooo dizzy, and I attributed it to the heat and probably dehydration. I have always been on the underweight side, so I thought maybe I was not eating enough. I was working full-time at a hospital as a dietetic tech, which requires hours of 6 am-2 pm and lots of walking around, and I was taking grad classes at night in addition to my running and racing. I thought maybe I was burning the candle at both ends because I felt super drowsy in an unusual way, like such an overwhelming feeling of constantly sore and dead muscles and a feeling like my body is  "forcing me" to just lie there and fall asleep.




I was so dizzy 24/7. Even lying down, I was dizzy. Working became impossible as I had to drive far very early in the morning to get to work and would feel so dizzy in the car that I’d have to pull over several times due to nearly passing out in the car, both on the way to and back from work.  I was having so much dizziness that I had to hold on to the walls of the hospital where I worked and began making lots of errors at work due to the overwhelming fatigue, drowsiness, dizziness, and brain fog.

I was also feeling a huge jump in heart rate upon standing, super dizzy and short of breath upon standing also. I began taking my heart rate both lying down and then standing and noticed a resting heart rate of 50 beats per minute, and standing it went to 120!

Just to cook, I had to sit down. My eyes looked sunken into my head, and I was losing weight. Eating became tough due to feeling so sick, and even sitting upright in a chair, I felt so dizzy. For 9 months, I went from doctor to doctor and was told I had depression and anxiety, that this was all in my head, and that I was healthy. I was constantly going to my ER in the hospital where I worked, and my boss was constantly threatening to fire me. I knew I was super sick, and nobody believed me. My boss didn't believe me and neither did the doctors. Only my mom believed me because she saw me every day and saw the drastic change in my health and my inability to live a normal life. She saw my rapid decline. I had every medical test under the sun: blood work, CAT scans of my brain, MRIs, fluid IVs, you name it. Nothing showed anything. I thought maybe I had some undetected brain cancer that was causing me to be so dizzy.

I did many Internet searches every evening, and then I found the POTS Place website!  All of my symptoms matched the criteria for dysautonomia! This site was where I found a hospital with a doctor in my area! It was the best thing. I got a tilt table test, and it was confirmed that I, indeed, had POTS. Finally, I was put on Florinef, Celexa, potassium, and midodrine and was finally able to get rid of the dizziness and get my life back.

For 6 years now, I have been living with this illness, and I know it is going to be permanent.  I have been working full-time for the past 3 years, but I want to go on disability because on the days I work, I am bedridden as soon as I come home, and the days I don't work, I am in bed all day just to recover from the 5 days I did work. The work situation is so fatiguing, stressful, and overwhelming for me and is depleting my quality of my life even further. Although I am much better than I was without the medications, I still do not have a normal quality of life and still have a high degree of orthostatic intolerance and a high need to sleep and lie down more than the average person.

I am lucky that I did improve as much as I did, but I know that POTS will always be a battle for me to fight. I get dehydrated very easily and constantly need to be diligent with the fluids. I cancel on things a lot, and I feel bad, but I am too tired and sick-feeling to attend 98% of the plans I make with people. This illness ruins life. I know it could be worse and has been worse, but I know I will NEVER enjoy the health I used to have. However, I guess everyone has challenges and problems, and this is mine.

edriscoll

Coming or Going

By edriscoll, in Member Stories,

By Barb
August 2009
My name is Barb; I am 56 years old now but started dealing with this in 2006 after my gallbladder was taken out.
 
After having my gallbladder out, the unknown began.  At the time, I had no idea what was going on, other than being taken to the hospital several times.  After many doctor visits to see what was happening to me, I said something to my internist doctor, and he said I needed to see a cardiac doctor.  I was set up for a tilt-table test. The doctor told me that I have neurocardiogenic syncope, vasovagal, etc. 

I am on a beta-blocker now and must tell all my doctors before anything is done to me.  I have been on a beta-blocker since 2006 and also started using salt tablets. If I start feeling funny, I put half of a salt tablet inside the cheek of my mouth (which helps).
 
It is so hard to tell people what I went through with this disorder. I would go into an epileptic-type seizure, draw my arms to my chest, and shake all over. I couldn't hold my legs still, and I talked like Katharine Hepburn. (I have not passed out but have been so close).  I would lose control of my bowels and then be so tired after all the things that had happened that I would want to sleep.  After a seizure, I would go home and sleep between 4-10 hours depending on how bad the seizure was.
 
I can no longer work due to all of my medical problems. I do play the mountain dulcimer and bowed psaltery, but I can't sit long due to my seizures; the prolonged sitting can activate a seizure. I can have restroom problems, and if I don't make it to the restroom, I can have, and have had, a seizure. If I become sick, such as with a sinus infection, it can bring on a seizure.  I tried to perform at church for all 3 services, and the last service I had to sit out because of having a mild seizure.  Along with all of this, I have bursitis in both hips (have trouble walking, sitting, standing) and arthritis in the lower back (which does not help walking, sitting, standing etc.).



 
Sometimes I don't think my husband understands what is going on, but he has seen one of the worst seizures.  He says that there is always something wrong with me. I had to tell him that I did not ask for this or any of the other medical issues.  He believed me after the bad seizure occurred.

We were getting ready for bed; I stood up, and my hands felt numb. I felt pins in my neck, and then it went up both arms. I thought I would lie down and put my legs up to get the blood back to my brain.  After a very short time, I could no longer hold still, and then the bathroom issue came along, so he had to help me there.  During that time, I just told him to call for an ambulance. (It all ended with a trip to the hospital). They told me that all my capillaries had opened up. 

I think what scares me so much is not knowing what kind of seizure will happen, so that probably brings up the nerve thing (maybe that’s thinking to much).  I think life is a journey, but I'd like to get off this ride for sure.  I know that I must accept it and go on, so that is what I try to do and not let it run my life; however, it still does.
 
PS:  There is probably more to add but my brain has stopped working for now.
Thank you for your support.

edriscoll

Mystery Magdalene

By edriscoll, in Member Stories,

by Magdalene Law
August 2009
Hello, my name is Magdalene Law, and I never thought it would be so hard to get HELP!
It started when I was in high school ('01).  The doctor ruled out MS and said it was either an unexplained muscle disorder or all in my head (which didn't make sense to me). I had gone from being number 2 on my cross-country team to not even being able to run around the track, all in one day.
The real trouble all started one day in March of 2008. After I had eaten at a Chinese restaurant, I found myself at home in bed rolling around because I had this painful spot in my abdomen that at first felt like it may be a gas bubble, and then eventually turned into sharper pains with nausea.  I thought that maybe I had just eaten some bad food.  The next morning, I woke up much worse than the night before; the pain was so bad that I couldn't stand up straight.  My mom said that I should go to the emergency room, so that is what I did.
When I arrived at St. Mary's emergency room, I of course waited 3 hours hunched over crying.  Finally, I was able to go back to be seen.  I expressed everything I felt to the doctor.  I also explained that I was born with gastroschisis but had not had any problems since I was a little baby, only the occasional scar tissue discomfort.  Gastroschisis has left me with a large scar from the bottom of my chest to my lower abdomen.  Gastroschisis (gas-tro-ski-sis) is an opening in the abdominal wall through which the internal organs push outside of a baby's body.  During fetal development, the abdominal wall fails to close properly, leaving an opening.



The doctor ordered a CT and pumped me with pain meds.  After that, he came back and told me it was probably just scar tissue or adhesions.  I told him that I had been dealing with scar tissue all of my life and this was not that at all.  He sent me home.
The next morning I couldn't bare it anymore.  I went to see my primary care, and they sent me to a surgeon right away.  The surgeon then hospitalized me, and lo and behold, they found that I had appendicitis from the CT done the night before!  It was not found before because my organs are not in the correct spots.  I am lucky that my appendix didn't burst, and I went into emergency surgery.  After the surgery, they couldn't get the pain under control even though I was on constant pain meds.  I was there for 5 days, and on the last day, I had an episode of constant throwing up.  At this point, everyone had been called in.  I then passed out cold and woke up alarmed to see all these faces looking at me.  For the next 2 HOURS I could not speak or move.  The only thing I could do was blink, so I communicated using 2 blinks for “yes” and 1 blink for “no.”  They thought I’d had a stroke and did an MRI.  I eventually gained back my strength and was told they didn't know what it was, maybe a vagal response.
That was March 2008.  After that, everything was going okay until June 2008.  I started to get slight discomfort after 5 minutes of eating.  It eventually got worse, and it was very painful to eat. It also turned into bloating, acid reflux, nausea, and dizziness.  I went through several tests at a gastroenterologist.  Everything came back normal, and he said that I would have to be seen at University of Michigan or Mayo Clinic. At that point, he said there was nothing he could do for me, and he stopped returning my phone calls while I waited to see a University of Michigan doctor. I am from Ann Arbor, so I went home to see a new gastroenterologist.  At this point, all of my tests had come back negative, so I wasn't expecting much. Thankfully, my stomach-emptying test came back positive.  After 4 hours, a person's stomach is only supposed to have 10% left of their food, but I had 60% left.  THIS WAS GREAT! She said that I had gastro paresis, which is when your stomach spasms instead of digesting your food, and your abdomen tells your brain that you are in pain.  At this point, I was in the fall of my senior year at Kendall College of Art and Design and badly wanted to finish school!  My gastroenterologist doctor and I decided not to try a drug called Reglan because of my past history, so she suggested going on a drug called domperidone.  She said it had worked wonders for several people. I was so happy that I had a doctor who seemed to care and wanted to help.  By November 2008, I thought my problem was solved.  IT HAD ONLY JUST BEGAN!!!!
I started taking domperidone, and within 2 days I had problems.  I was at work hosting, and all of a sudden my legs stopped working and began shaking uncontrollably.  I started to have a rash all over my upper body, my vision narrowed, and I was having a hard time breathing.  My gastroenterologist told me to go to the emergency room immediately.  When I got there, I went into shock in the waiting room, and they sent me back to a bed right away.  My legs couldn't stop shaking, and my breathing was getting worse.  At that time, my boyfriend arrived and was in confusion as to what was going on because I wasn't able to control anything.  While my doctor was talking, I told him that I thought I was going to pass out, and he ignored me.  Then, all of a sudden, I was falling toward the ground and went out cold.  The doctor caught me.  I woke up very lethargic and not able to move or talk, like before.  Eventually, I came to. The nurse decided to tell me that he thought I had anxiety and that I should get help!!!!!!!!!!!!! I told him that this was not anxiety, and he only pushed it more! I WAS OUTRAGED! When the doctor came in, he said the same thing.  I told him that it was not anxiety that there was something very wrong with me.  He didn't believe me but said that since my heart rate was so high I was going to be admitted into the hospital.  My mom drove to Grand Rapids and helped me through the next 7 days!
I was admitted to the hospital and, after a day, I was sent to the ICU because my heart rate was up to 180 beats per minute lying down.  The staff kept telling me to calm down, and I told them I couldn't.  It’s not like I could control this!!!!  After a couple days and some beta-blockers and other meds, I was moved to a normal hospital room.  Every time I ate, I passed out. I couldn't move and could barely talk for 2 or 3 hours each time.  At this time, I was on a liquid-only diet.  Meanwhile, I had 8 doctors all come in one day to see me, including my primary care doctor, a neurologist, and a psychiatrist.  Each one told me that this was all anxiety and that they wanted me to take a medicine for anxiety.  Also, they said that I was a female and trying to do too much with school and work.  I WAS SO ANGRY!  After the first 3 doctors, I was so angry that by the 8th, I was enraged! NO ONE WOULD LISTEN TO ME!!!!!!!!!!!!!!!!!!  I knew that it wasn't anxiety and that there was something very wrong with me.  I take very good care of my mental health and always make sure that I am honest with myself because I have had problems in the past.  The doctors treated me like complete crap and told me that I was a woman at the age of 23, trying to finish school, and that my body was just shutting down.  They said that I was too stressed and couldn't control my emotions, so that was why I was in the position I was in!!!!!!!!  At one point I passed out and was unable to talk, and the doctor ordered the nurses to give me anxiety medicine so that I would stop having the episode.  I couldn't tell them that I didn't want it because I couldn't talk.  They knew that I didn't want to take it because I had refused it earlier.  It was unbelievable.  At this point, my heart rate was at 120 beats per minute.  I could barely walk. I had Parkinson-like symptoms. My breasts had filled with milk from the domperidone. Every time I threw up, I passed out, and every time I ate, I passed out.  After 7 days, they told me that since my heart rate was better, there was no reason for me to stay there and that they wanted to send me to a nursing home because I was unable to take care of myself.  My mom said no, that she would take care of me.  I left the hospital and headed for Ann Arbor to recover for 2 weeks, missing the last month of school and my new job as a graphic designer for FOX NEWS.  I was bummed!
By Jan 2009, I was somewhat able to walk, and I returned to my job and last semester at school.  I also returned to my primary care doctor saying that I still had strange symptoms and had some new ones.  I had a hard time walking. My legs were in constant pain.  I would get dizzy every now and then. I didn't know when I had to urinate; I would just feel pain and know I had to go. I would get really hot and sweat for no reason. After I ate, my chest really hurt, and I had palpitations, as well as swollen hands and feet. I couldn't walk up stairs, had constant urinary tract infections, constant yeast infections, and my ears would get really hot.  She told me that it was only anxiety and that I should really take my medicine.  I have been an athlete all of my life, participating in cross-country in high school and rugby in college (even on all-star college teams).  There was no reason I shouldn't be able to walk!  Something was very wrong.
I have a family history of serious thyroid problems.  Six women in my family have thyroid problems.  I thought that maybe domperidone had triggered something and affected my thyroid.  I was also concerned about having diabetes because every time I ate sugar, my body freaked out, and I got really pale and disoriented. She wouldn't refer me to any specialist.  She said that I would be a waste of their time and that they had to deal with patients who were dealing with actual problems.  So I found my own specialist.  The endocrinologist told me everything looked normal except that while I was in the hospital, my parathyroid was low, but was now fine! Okay, so that wasn't it. 
I kept plugging away at different doctors. Everyone was kind of telling me I was "crazy" because there was nothing wrong with me!  By Feb 2009, I went to see my gastroenterologist doctor for my monthly check up.  By this time, my gastroparesis was not bothering me as much as everything else, and the erythromycin I was taking for that was working. I showed her this strange rash on my foot that would get brighter when I was hot.  It was strange because it was red with a white circle in the middle. She saw me and said, “yes, there has to be something wrong with you.” She thought I might have lupus.  So she said that she was going to send me to a rheumatologist. 
I met with him, and he couldn't believe that I had been turned away from so many doctors.  He said that there was something very wrong, and we would find it!  That day he diagnosed me with fibromyalgia and Raynaud's phenomenon. This obviously wasn't what was completely wrong with me, but it was a start!  YES!  I WAS SO HAPPY THAT DAY THAT I COULD BARELY STAND IT!  I had blood work done, and, of course, everything came back normal, except my platelets were clumped, but he said that it wasn't a big deal. He set me up for a tilt-table test.  He stated that it was strange because my body was acting like there was an autoimmune problem, but all of my tests came back fine.
I went to get my tilt-table test done at University of Michigan the day before we were supposed to leave. The nurse there said that everything should be fine and that I probably would test negative since people rarely tested positive for this test.  I had a really bad feeling about it.  I told my mom, and she said just to relax and that it would be fine.  I started the test, and my heart rate went straight up. Then she put in the adrenaline, and everything started to hurt.  My body was getting constantly shocked, and my blood pressure went straight up and then straight down; it hurt so badly. I lost my eyesight and kept telling her that I was going to pass out. Then I passed out!  I had to lie there for some time before I could get up again.  I tested positive for the tilt-table test and the doctor ordered me to wear a 20-day heart monitor.  She said that I may have vasovagal syncope, but there are many different kinds of syncope!
My mom and I had been planning a trip for my senior spring break to Greece through school, and no matter what, there was no way I wasn't going!! Greece was hard at times, but I took it easy and was able to enjoy everything with my mom being there!  When I got back, I started the monitor and went to school.  That day I felt awful and like electricity was going through me.  I could feel my heart rate and blood pressure shooting straight up.  I asked my friend to walk me to my car because I didn't feel good.  Walking down the hall, I hit the wall and passed out.  They called the ambulance, and I ended up in the hospital again on March 18, 2009.
For the next couple weeks I would go in and out of consciousness. I had visual disturbances (where I would only see tints of green or yellow or see everything in a 2-D form). I had a 4-week long headache, sweating so bad that my pants were soaked and nothing else, rapid heartbeat, rise and fall of blood pressure, a feeling of electricity going through my body, trouble breathing, swollen hands and feet, and pain in my legs and joints so bad that I couldn’t walk. Sometimes I didn't even have the ability to walk.  I couldn't sleep. I got really hot spots on my body, but everything around it was cold (and also turned red). I had a kidney infection. I felt shaky.  Bright lights and loud sounds hurt, and I got very dizzy and nauseous when I stood up or did anything over normal walking.  Two weeks ago, I discovered that I was allergic to the heart monitor I was wearing, so that was making my symptoms worse. 
I joined a support group called STARS-US that deals with syncope and researched several illnesses that dealt with vasovagal problems. It was clear that I had many similarities to a disorder called POTS.  I was diagnosed with Postural Orthostatic Tachycardia Syndrome in May of 2009. This was great news. Now what?
In between then and now, I've been hospitalized a couple of times for losing my ability to speak and form sentences properly and feeling like I was suffocating. I started new medications that controls my heart rate and blood pressure.  My doctor at the University of Michigan, Dr. Good, just tested me for blood amount, and it looks like I don't have enough blood in my system! From what I’ve read, having weekly transfusions could get my POTS under control!  One could only hope!
Now, I have awesome doctors at University of Michigan and Grand Rapids Cardiology who care and understand what I have.  People who are sick should be resting, and they should not have to waste their energy fighting doctors.  It seems like if doctors can't find a simple answer, they give up and tell you that you are crazy!  All you can do is fight for what you believe in and never stop until you have answers.  Everything happens for a reason; you just have to figure out what that reason is. You are your own advocate. Today is a NEW DAY!

edriscoll

POTS Saved My Life

By edriscoll, in Member Stories,

By Lindsey
October 2008
I haven't had the easiest life.  I’ve moved from place to place, scared my mom would get arrested for drugs.  Every time my dad got out of prison, I would have hope again that I had someone.  It always seemed that once I believed he would be there for me, he would do something so stupid and selfish and get sent away again.  So I began to rely on myself at a very young age.  I would do everything for myself and just appreciate it if I got some help.  I would try to not ask for much from my family and friends. 
As I got older, things got really stressful.  I became really upset because I never got any attention. Being shy didn't help.  All the people who smoked weed and drank had a group, and they all talked about the fun, yet stupid, things they did during the weekends and on vacation. So I was interested.  I thought it would be a way for people to notice me.  At this time, I was living with a family member, and she was throwing me my first big birthday party.  She got drunk and went out to party after we had cake.  She had bought a lot of alcohol.  So I had all these people over and got a little excited.  I started to drink and offered some to the guests at my house.  I got trashed.  I know I loved the attention from the guys at my house, and because I never really had my dad, it just gave me a feeling like a Band-Aid over my broken heart.  Then, one person would tell another that my house was the place to be.  My family member worked graveyard shift, which worked out great for me because that meant everyone could party with me.  



So a few months passed, and I really liked all this new attention.  Soon enough, my guardian knew I was drinking but did not mind much, as long as I kept myself out of trouble.  So since she did not care, I think that kind of hurt me because I wanted that attention.  I wanted someone to be my parent.  So I started depending on guys to get the attention that I wanted.  I would make out with other girls to get them to notice me.  I began having sex after a situation that happened during spring break.  My life started going down the drain.  I was becoming what I fought my whole life not to be-- my parents.

I started getting dizzy in gym class. Then, one day I smoked weed.  I did not want to, but I am not good with peer pressure, so I did. My heart rate started going 180 bpm.  The girl I was with would not take me to the doctor.  I told her to just drop me off, and I would say that I smoked it alone.  I kept begging her, but she would not take me.  I went home to my Christian guardians. I told them that my heart just started racing.  After that, I was sick all the time.  I eventually had to quit school, work, and my social life.  Every time I tried to do anything, I would always get sick.  It felt like I was going to pass out, and my heart would race.  I could not breathe, but people would just tell me I was fine-- that I was being a hypochondriac.  I knew that I wasn't. It would make me so frustrated. Eventually, I got scared to be home alone.  If I was awake and knew I was alone, I would have a panic attack.  I was so scared that I was going to die.  It seemed like every time I went to the ER, I would start feeling okay again.  
Then my family doctor finally sent me to a neurologist.  He sent me in to get a CT scan and an EEG.  With the EEG, they said my beta waves were high, but did nothing.  I thank God for the lady who did my CT scan. She actually had POTS.  After I told her all my symptoms, she looked as if she was going to cry.  She told me that she had had it for eight years, four of which she was undiagnosed. She gave me her specialist’s number, and finally, after 10 months of being sick, I got in to see this doctor.  He ran some tests on me and told me that I had POTS.  I was happy to know that I had a diagnosis, but I was scared about it.  
I just started my medication today, and I am going to see what happens.  I think this was a godsend.  God has helped me so much.  I realized what sad people I was hanging out with.  I realized that I was poisoning my body for a little attention.  I realized that I changed myself just to be accepted by shallow people.  I realized so much from this experience-- especially what an idiot I was.  My life probably would have turned out exactly like my mother’s life.  I love my mother with all my heart, but her life is not the best.  I thank God for helping me see things clearly, and I know when I am ready, or if it is a purpose in my life, He will make me better.  I could not have been so strong without my boyfriend.  He is the love of my life.  He has been there for me more than anyone in my entire life.  He is my angel. POTS saved my life.

edriscoll

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.

edriscoll
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.

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