Jump to content
  • The Member Stories section of our site is a place where members can submit the 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

by K. M.
February 2006
I began fainting when I was 12; I’m 24 now. 50% of my life has been faint free, 50% hasn’t! Quite an apt figure really- is the glass half full or half empty? I’d be inclined to say half-full, though it doesn’t always feel that way.
I fainted my way through my teens, on account, the Doctors said, of heavy periods. True enough, I did faint more at the time of the month. But I always felt something else was going on too. Still, at 16, things improved and I had 3 faint free years. I moved away to St Andrews University and was having a ball.
One day in my second year I fainted in the street while out with friends. This became a frequent occurrence- I would feel the blood drain away from my face, lose my vision and crash to the floor. My GP sent me to a cardiologist who performed a tilt-test. It was horrific; I thought I would die I felt so awful. But they gave me an answer about the faints- Vasovagal Syncope: blood pressure and pulse that dropped too readily on standing. I carried on fainting occasionally, but it never stopped me from doing anything. It wasn’t malignant, they said- just annoying. I dealt with it and carried on.
Then in 2004 I got a flu virus, and began to faint on standing. It got bad, so I went home to rest for a while. I hadn’t even been on the train for an hour when I sparked out, and the other passengers said I stopped breathing and had no pulse. After I sent the paramedics away, I managed to get home and the fainting worsened. It was almost every time I stood. In the end, after the scepticism of various GPs I bought a blood pressure monitor to see for myself what was happening to me. I was sure my heart was racing, and I was proved right when my pulse jumped from 64 to 156 the first time I took a reading on standing. It was a terrible time; I snapped bones in my foot by fainting awkwardly and was covered in bruises from constantly falling.

I still had no real answers from anyone; the Cardiologists told me that it was the Vasovagal Syncope rearing its ugly head, but my pulse slowed with that, it didn’t race. I knew something else was going on, so I researched “postural tachycardia.”  Imagine my shock when I did- POTS mirrored my symptoms exactly. I went back to my GP, armed with readings and literature- and he instantly congratulated me on doing what he hadn’t been able to- finding out what was going on!
In January 2005 I was diagnosed in London with POTS. Since the flu virus, things haven’t been the same. I graduated a year late from St Andrews- but my glass remained half full- I got a first, and partied at the ball with Prince William! I have been back and forth between cardiac care units like a yoyo. As I’ve become used to it though, I am now attuned to my body and can get enough of a warning to tell people and usually prevent an injury. My pulse can be anything from 30 to 250+, and my blood pressure, they discovered in my most recent test actually flat lines, as well as see-sawing its way up to 228/170. I have to use a wheelchair on some days because I cannot stand up at all; but I only resort to it when I have no other choice.
I can’t digest wheat or lactose properly anymore; I now suffer (very occasionally) form hemiplegic migraines, where my body goes numb down one side. I have Ehlers-Danlos syndrome too, which explains the aching joints I’ve had for as long as I can remember. Having answers like this is satisfying, but it reflects one way that my glass is half empty- those diagnoses do not bring a cure, although my health seems to go in cycles. I can be fine, just like I’ve never been ill, and then crash in real style.
Personally, I think there are two responses to this kind of predicament. The first is the easiest- I could have lain in bed crying about the things I can’t do and the unfairness of it all. The second is much harder but I try to abide by it- I try never, ever to give in to the POTS, no matter what it does to me. I’m at Oxford University now, having secured an unconditional offer, studying a subject I love with some amazing academics. Life here has been a lot tougher than I ever imagined; I’ve found myself in hospital 6 times in the last 6 weeks alone; and I never know what tomorrow will bring. I’ve had classes where I’ve given presentations lying on the floor with my legs up on the table! I’ve had days where I’ve had to read for essays while lying on a hospital trolley. There are days when I can’t focus, work well, or even move. But I won’t let go of my dreams. I will complete this degree like I did my St Andrews one- well.  The POTS won’t win- I will. I may not be able to play hockey, go to the gym, or swim like I used to, but my brain sure is getting a fantastic workout!
The crux of my story is this: do not accept the unacceptable. Had I listened to doctors before I found the UK’s only autonomic specialist, I would have believed I had M.E or some other inaccurate diagnosis. You know your body better than anyone. Keep fighting for answers. And don’t ever think that POTS will stop you from living your life. It might alter when you do the things that matter; but keep pushing, and it won’t stop you from doing them. I am bigger than this condition and I refuse to let it define me. As Livy himself said, "Intelligence can leap the hurdles which nature has set before us."

by Brenda Richardson
January 2006
I was diagnosed with Fibromyalgia in my early twenties. I learned to live with the pain along with the chronic fatigue. It was not very easy though, as I was a very active person and did not like having to learn to slow down. I had to take many breaks on bad days to keep myself rejuvenated. In this way, I could do more in the long run. I lived this way for about 15 years, and then things changed quickly.
I own a cleaning company and suddenly found it hard to hold my arms up while cleaning. They would tire very quickly. Sometimes I would push myself and try to keep going, and then my arms would cramp up. I would have to stop doing whatever activity I was doing.
I went to the doctor, but all the ran tests were negative. I was told to go home and take vitamins.
I was big into exercising, and I would find it hard to do my exercises. My legs became weaker. I was very frustrated and went to doctors for this. The doctors said it was just chronic fatigue. This upset me, as I knew I was not tired. I had a lot of energy, I just could not make my body work and every little thing became a chore to do. What normally was no big deal, like my house work, turned into a major ordeal for me.

I was very sensitive to noises and smells as well. Bright lights bothered me, and I felt like I was going to pass out when I would bend over and then stand up. I stumbled around like I was drunk, and I had slurred speech at times. I also felt like I had dementia or something of that nature, as I would have short-term memory loss.
I found myself getting very irritated. I had mood swings and went from happy-go-lucky to frustrated without knowing why. Maybe it was due to my body not working correctly.
I went back to my doctor and was told it was because I was anxious. I was told I had anxiety and chronic fatigue, along with depression. I was mad. I was not depressed.
I was determined to find out why I was weak and get it fixed so I could go back to my normal life. I searched for the right doctor to help, but could not find one who knew what was going on with me. I looked for about 2 years. Then my health started crashing fast. I was having trouble just getting up and dressing. I was totally exhausted after showering. I was so weak it took a lot of energy just to eat.
Doctors still did not know what was going on, and my health just kept going down hill. I was so weak I lived most of my life in a reclining chair on good days and in bed on bad ones. If I tried to walk I would collapse.
I finally found a Neurologist who did the tilt table test on me. I was then diagnosed with POTS. My heart rate went to 180 just standing, my blood pressure took off to 156/90 and then crashed fast. This is what caused me to collapse.
I was put on a beta blocker to help lower my heart rate and also told to wear compression socks to help with the passing out. I still had weakness in my muscles and joints.
I noticed I would get very sick on certain foods, such as sugars, breads and cereals. I then found out I have celiac disease, which means I am gluten intolerant. I had to go on a gluten free diet. This has helped me a lot, although I still suffer with muscle weakness and injuries to my ligaments and I have severe muscle cramping and shooting pains. I have trouble climbing stairs as well, and have difficulty holding my arms out. I am also off balance and have a hard time walking too far.
I have good days and bad, but I do have to say that with my diet change, beta blocker and compression socks I am no longer stuck in bed or my recliner all day. As for my muscles and ligaments, I am still awaiting a diagnosis as to what is going on. I am out doctor shopping again, hoping one will be able to give me answers.
It’s unfortunate that some of us have to go through many doctors and hear it’s depression or anxiety. If you are relating to any of this, I do hope you stay strong emotionally and keep pushing to find the right doctor to give you answers. We all get frustrated and depression can happen, although with most of us it is situational. We have depression because our health has changed.
It’s touch and go through a health change, and I know we could not go through it all alone. I am thankful for the support groups that are available and also for the medications. I feel that if antidepressants and pain medications can help than people should take them. It’s not worth suffering through this without help, be it medical, physical or emotional.
Always remember, you know your body best. There is hope! I am not back to normal, and that’s okay. I have learned to do many different hobbies I would of never picked up had I been healthy. A change in life can be hard, but at the same time it can be a blessing. I feel God has slowed my life down to enjoy the important things in life!

By Amy Van Der Kamp
January 2006
I once read: When one door of happiness closes, another opens; but often we look so long at the closed door that we do not see the one which has been opened for us. This was written by Helen Keller.

I think this is so true. Eight years ago, in 1998, I was in college majoring in photography. My dream back then was to become a photographer, travel the world, and express myself though my photos. I worked as a work study student in the photo lab to help pay for my schooling. One day in January 1998, I was mixing the stop bath for the students to use, and the boxes where miss marked. When I began to mix the chemicals, I began to get very dizzy and passed out. I was taken to the hospital and was hospitalized for a few days. I was told that due to how badly the chemicals affected me I should think about another career.  (This was the first door that closed in my life.) I was not willing to give up that easy. My family stuck behind me, along with my boyfriend (now my husband).  I got fitted for a resipory mask and wore gloves to keep the chemicals off my hands. Things were very hard for me.  I began to miss more school, and I just couldn’t keep up. So I came to terms with the fact that it was time to drop out, and try again in the fall of 1999.  I started working fulltime and got on with my life. A part of me always wants to know what would have happened if I would have kept fighting.

Well time started to go by.  In late 1998, I began having a problem with keeping food down and started losing a lot of weight. I was hospitalized for a week; they really couldn’t find anything wrong so they sent me to the University of Iowa, where I went though many test to be told they thought that it was the birth control shot I was on.  They gave me shots to help, and sent me home. A month later I began to feel bad again.  This time they thought it could be my gal bladder.  The day of the test I couldn’t eat or drink for 8 hours. The morning of the test I was getting out of the bath and drying off, and I passed out. I hit my head on the side of the tub. So I was taken to the hospital, and told I had a concussion.  I could not have the test run that day due to my head.  A few days later, I did undergo the gal balder functioning test. They told me my gal bladder was not working and that it needed to be removed. So I had my gallbladder removed. They only thing was that it didn’t really help a lot.
In January 1999, I got married, and my husband and I moved to Des Moines, Iowa for work. I started my new job in March. My first day on the job I was working standing next to the table making bread (I was a baker), and I passed out. I hit the floor; again I was off to the hospital. Again I received another concussion. This time the doctor thought that maybe I should see a neurologist. So we made an appointment only to be told he thought it may be my heart. So we made an appointment with the cardiologist. They listen but really didn’t seem to think it was the heart. They made an appointment for the following year for follow up. I started getting depressed at this time as I knew something was wrong, but no one seemed worried. I went to so many doctors trying to find an answer, but never got one. So I turned to drinking. This only made things worse, and then the doctor began to think it was in my head and that I was depressed.

In late 2000, I was in treatment and passed out right in front of the doctors. Finally, someone was concerned and believed me. They had a cardiologist come see me. When I got out, I went for testing, and they did a tilt table test. This test was positive. Then they also order a stress test. The stress test showed that I was having some rhythm problems. So they put me on a beta blocker, told me to drink lots of water, and eat lots of salt. Things got a lot better.

In 2003, I began to have chest pain, my heart would take off racing, and I would feel like I was going to pass out. I began to feel dizzy all the time. I found that summer I couldn’t be out in the heat; it made me feel so sick. I was starting to feel like I was losing it. Again, I went to the doctors, and they said just to make sure I was drinking enough. In September of 2003, I found my self in treatment again; only this time they did an EKG on me while I was there. They found that my heart was racing, and it was going too high. So they said I should have an EPS study and find out what’s going on.
So in January of 2004, I underwent an EPS study. While they where in my chest, they went ahead and did an ablation in hopes this would help. The ablation took 6 ½ hours. When they where done and I came to, they told me I should start getting better soon. The first few weeks I did, but then I began to feel more tired and dizzy again. This time I went back to the doctors, and they said lets give it time. The only problem with this was I wasn’t getting better. On July 9, 2004 while driving to work, I passed out. I put my car in the ditch. This time my husband pushed the doctors and said there is something very wrong with Amy.  So they admitted me for 24-hour monitoring. Within 30 minutes of being there, I had the staff very worried.  My heart rate would drop down into the 30’s.  They said I needed to have another EPS study, ablation, and pacemaker implant. So on July 14, 2004, they placed a dual chamber pacemaker in my chest. The doctors told me I should feel better soon and get back to my old self again. I was so relived and so ready to get back to my old life before all this started. Little did I know that this was just the start of my problems.  I never felt better after the pacemaker was put in. In fact, I began to get worse. I still felt dizzy and was still passing out. I began to start getting headaches, leg pain, chest pain, side pain, neck pain, began to stop sleeping, and my b/p began to run very low. Due to the fact things where not getting better, my family doctor got involved for the next eight months. I went to the University of Iowa, Mayo, and Cleveland Clinic. After all the hospital stays and tests, they found out that I had POTS, and NCS, low blood volume, and rapid blood flow. So, it was nice to know I was not crazy and that it wasn’t in my head!  After trying many drugs, and not getting better, my doctor told me it’s time to stop working and slow down and hope that medical science will come around. I will never forget this day (December 13, 2005), it truly change my life.
But where do you go from here? It’s a good question and one I role over in my head all the time. I am not sure what tomorrow will bring, or even latter today, but I can live in the moment and enjoy life today. Even though all the doors in my life keep closing one new door opened for me. I get to stay home and raise my son. I get to enjoy the small things for the first time. I was so busy working that when I got home I was wiped out.  I missed my son’s first word, and I missed the first time he took a step.  I can’t get that back, but I can be a good mom now. I can be a better wife. I can learn to live my life to the fullest.

We don’t know when the next door is going to close in our life, but remember there’s always another door, and if you can’t find the door, look for a window!

By Vanessa
November 2005
My story begins in October 2004. I was driving along a desert highway, and then my life got turned upside down. That was the beginning of my trip down a road that I had never traveled. A road where I was always so fatigued that I could not get out of bed by myself, my blood pressure was so low that I either fainted or felt like I was going to faint, and a long list of other symptoms that I had no idea was connected to the same problem.
I had a car wreck that should have killed me, but miraculously I only had a few cracked bones and a severe concussion.  I was hit from behind by a woman that was trying to kill herself and take out as many people that she could along the way.  I was going between 50 and 55 miles per hour, and the witnesses said that she was going in excess of 80 when she hit me. The ambulance took me to the hospital, and they could not find anything but a few cracked bones or, as they said, non-displaced breaks. So, they were going to let me go home. When I tried to sit up, the room started spinning; and I got violently ill, so they kept me in the hospital.  It was only supposed to be overnight for observation, but three days later they finally let me go home.  I found out on the day of my release that my blood pressure had been dropping dangerously low, and that is why they kept me so long.

I thought everything was ok.  I assumed that it was due to the car wreck.  So, I was not concerned. I went to the orthopedist, and he had me doing my own physical therapy, which went well until about February 2005.  I got to where my heart felt like it was going to pound out of my chest.  I could not go on my walks like I had been doing every day since October, and my heart was always beating weird. I thought that maybe I was getting a virus, which even that was strange for me because I almost never got sick. Maybe I got the flu once every 3 or 4 years, but I rarely even got a cold. My biggest medical problem was seasonal allergies. I had not been to the doctor for anything medical, other than allergies, in over 20 years.  I never could see going to the doctor when you weren't sick. I started having headaches everyday, sometimes I would wake up shaking, and I could not make my hands stop shaking. I would always call it a case of the nerves. It seemed like anything that I ate would upset my stomach, and I stayed nauseous all of the time. I still thought that I just had a virus and didn’t go to the doctor.  My symptoms kept mounting up. My eyesight would gray out totally or just the peripheral vision would; I stayed constipated; and I would have terrible mood swings where no one wanted to be around me.  I couldn't get the house the right temperature.  I was either too hot or too cold.  I would have terrible dizzy spells and walked like I had one too many.  If someone touched me like a love pat, it would actually hurt.  Light would hurt my eyes horribly, especially fluorescent and the sun.  When I was in a store, I would always keep my sunglasses on.  My memory seemed to be getting worse, kind of like a brain fog.  I would be carrying on a conversation and just lose track, or I could not think of the word that I was looking for.  Odors would drive me up the wall.  I was staying nauseous all of the time. Every time that I would try to stand up to do the dishes, I would get so fatigued that it felt like my legs were Jell-O.  I could not do my physical therapy any more. Sometimes I could not even go to the toilet.  I would have chest pains so bad that I just knew that I was having a heart attack.  
In April, my family told me that I had to go to the doctor. When I went to the doctor, I found out that I was having severe problems with my blood pressure. I thought that it was just because of the accident, but I was wrong.  My blood pressure was 82/43 in the doctor’s office and very weak, and he put me in the hospital for some tests.  While I was in the hospital, my blood pressure would drop even further and then it would come up.  Even after all of the tests, he still didn't know what was wrong with me.  I ended up in the hospital three more times in May and once even in ICU, because my blood pressure was so low. On the third time that I was in the hospital, my doctor said there was nothing wrong with me and that I should get a job, stop worrying about my health, and go to a psychiatrist. So, basically he called me a hypochondriac.  My family said that was ok, they were going to take me to another doctor anyway. 
So now more doctors. My primary sent me to a Cardiologist because some of my EKGs showed bradycardia.  Then all of the big time tests began.  Before I saw this doctor, I had more blood tests then the law should allow.  I had a nuclear stress test, cat scans, x-rays, wore a halter monitor, and even had a cardiac angiogram, which is very painful and scary.  All of these tests for a woman that had not been sick in many years. When I went to the Cardiologist, I had it in my mind that maybe I was crazy, so I was really apprehensive, but I went for my family’s sake. He then started having all of these tests run.  Some of the tests I had before, but he had them done again at a different hospital because he did not have any faith in my hometown hospital, but then neither did I.  Every test came back negative. Then he had a tilt table test done.  It came back inconclusive. But he was putting all of my symptoms together and told me that I had partial Autonomic Dysfunction. 
I didn't know what it was or how serious it was until I got home and researched it on the internet. Then I got real scared.  At that time, he put me on Florinef to help raise my blood pressure.  I was on it for a few weeks and my blood pressure was still dropping, so he added Iodine and told me that I needed to see a neurologist. Well, I had my appointment with the neurologist.  He confirmed that I have multiple systems Autonomic Dysfunction.  He is now researching specialty tests to see if he can come up with what is causing this.
There is no history in my family of any neurological problems, and since I did not injure my neck he does not think that the wreck caused it. He said that it could have triggered it, or I could have been having mild symptoms before and just ignored them.  In this journey, I also found other medical problems that I had and did not know about; however, none of them are fatal.  It was an eye opener when the doctor told me that I probably had a maximum of 10 years to live.  However, I told him "Not Me;" I am going to be the first to live longer.
I am trying to adjust my lifestyle to make it more comfortable for me, and I am spending as much time with my family as I can.  I have 2 beautiful grandsons who I adore; a husband who has stuck by me for 33 years; and a daughter, son, and son-in-law whom I love very much.  I have made a list of things that I want to do, accomplish, or go to while I can.  I plan on doing everything on that list. Who knows, I might even add to the list. I plan on enjoying every minute of every day to the fullest. No, I didn't ask for this life, but it is the one that I have, and I am going to make the most of it. 
If you know that something is wrong with you and it is out of your control, keep searching for the reason. Don't believe the doctor if he tells you nothing is wrong with you, and things are happening to you that you can not control.  Keep searching.  It may be nothing, or it may be life shortening.  Find a good doctor, one who cares about their patients, and don't give up. It has taken four doctors validating my condition before it finally hit home, because I had two doctors tell me nothing was wrong with me. 
I have accepted my disorder or whatever you want to call it, but I am not giving up. I have applied for disability, now have a handicap sticker, and even go shopping with my daughter every week, and I never liked shopping before.  My son is moving in with us to help take care of me. He is single and wants very much to help me.  I have to wear Depends, and I have to watch what I eat and drink. The doctor had to take me off of the Florinef and the Midodrine until after I have back surgery because, mixed with the pain pills that I have to take for my back, it raised my blood pressure so much that I had a mini stroke.  My neurologist told me that after I have recovered from my surgery he wants me to take as little medicine as possible.

The pills were just aggravating the symptoms, so I am only on 8-10 pills a day instead of 19-22.  I am adjusting my life to fit my needs, and I am enjoying every minute of every day.  I have to take lots of naps, and shopping really tires me out, but that is what the motorized carts are for.  
No, I didn't ask for this life, but I am making the best of it.  When I do go, I have already told my family that I do not want a wake.  "I Want A Party."  I want a big celebration of life with lots of upbeat music. I want that time to be laughter and joy, not to mourn me but to celebrate my life. My faith keeps me strong, and the love that I give and receive keeps me going.  I just hope and pray that anyone who has this problem has the support they need to not only keep going but to enjoy their life while they still can.  I know that there are going to be days when I can't seem to cope, but I will get through those too. 
Anyone who needs someone to talk to or just to listen to them can email me. I will talk to you, but most of all I have a big shoulder, and I care. 

By Lauren Mitchell
October 2005
It began suddenly. I had the summer off from school and had begun riding horses regularly at a nearby stable.  I was jumping a course when all of a sudden I felt like I couldn't breathe.  My heart was racing, and I felt dizzy.  I hopped off my horse, sat down in the shade and drank a bottle of Gatorade.  After a few minutes of sitting down, I felt a little better, so I untacked and went home.  I assumed it was dehydration and decided to drink more before I went riding again.
On the drive home from the barn, the dizziness returned.  There were times I thought I was going to pass out at the wheel.  When I got back to my apartment, I took a quick shower and went to bed.  The next day I called my doctor.

By the time I saw him the next week, I'd already started having these "attacks" several times a day.  I'd quit riding, quit smoking and developed an aversion to caffeine, sugars and dairy products.  I'd also lost five pounds.  He did an EKG (I’d also begun having heart palpitations).  He decided after listening to my story that I was having panic attacks and referred me to a psychiatrist.  The psychiatrist put me on Xanax. This made things much worse.  Whenever my heart raced, I would take a Xanax, but the pills made me feel dizzier and more out of breath.  I was unable to get out of bed for the week I was on the pills.  I called my doctor and explained what was happening, and we decided to stop the Xanax.
School started the next week.  I resolved that whatever was going on would just have to wait and decided to pick up a large course load.  I was standing in line at the bookstore when I had another "attack."  I decided to ignore it just to see how bad it would get.  My heart was racing, I was panting, then the room went gray and I fell.  A friend convinced me to go to the campus clinic to see a doctor, so we walked together.  The whole time my head was pounding, and I felt like my heart was going to beat out of my chest.
The campus doctor did a blood pressure series and discovered that when I was lying down, my pulse was in the 50's and my BP was in the 120's.  When I sat, my pulse went up into the 80's and my BP dropped to the low 100's.  When I stood for a few minutes, my pulse would soar to the 140's and my BP would drop to the 80's.  He told me that he didn't know what was going on, but that I needed to go home and get some rest and to make an appointment with a cardiologist and an endocrinologist.
I drove home, and things became much worse.  I fell while walking from my car to my front door and again when I was walking to my bedroom.  The second time, I was unable to get up off the floor for nearly twenty minutes.  I called the campus doctor back, and he told me to call 911.  I was admitted to the hospital and spent a week in the cardiac ward.  I had a cat-scan of my chest, several EKG's, a holter monitor, and so much blood work that I began to look like a junkie; but everything kept coming back relatively normal.  I did have a pronounced sinus arrhythmia and PACs (premature arterial complexes), but those weren't the cause of all this trouble. The only evidence I was sick at all was my plummeting BP and soaring heartbeat. I was eventually sent home by the stumped doctors and told to "take it easy."
I had to wait another month before anyone ventured a diagnosis.  By this point, I was almost completely bedridden and had lost nearly twenty pounds.  (I went from weighing around 130 to 112.)  Finally, I went to see an electro physiologist who told me I have orthostatic intolerance (which anyone could have guessed). He also told me to eat more salt and drink more fluids.

Now, a month after the "diagnosis," I've learned coping mechanisms on my own to make this thing more manageable.  I've cut down to three classes, and try to stay in bed most of the time with my legs propped up (the way you posture someone who is in shock).  I try to eat 10 grams of salt a day and try to drink no less than 1 1/2 liters of water a day.  When I do get out of bed, I sit for five minutes before standing, and have begun using a cane to help me keep my balance.  If I'm able to go to class, I've learned that sitting with my knees to my chest (fetal position) helps with the dizziness, and if I sit like that, I can usually make it through an entire lecture.  I've completely cut sugars, caffeine, and dairy out of my diet, which seems to help.
The doctors still don't know what to do with me.  And I'm still looking for someone who will try to treat this, rather than scratch their head at it.  I think that's been the most frustrating aspect of my illness: no one knows how to help or even what's causing this.  They just shake their heads and refer me to another specialist.
Before getting sick, I operated under the naive assumption that doctors cure illness. Now I know that they cure some illness, but there's a vast sea of information about the human body and its workings that they don't know. This website has helped me immensely though.  I know now that I'm not alone, that this happens to other people. This makes it easier to live with OI.   By taking things one day at a time, I feel as though my life is tolerable, although far from perfect.

Note: I live in the Honolulu area, so if anyone knows a doctor who has experience with POTS or OI who doesn't require a plane ride to go see, please email me at laurenem@hawaii.edu  Thanks.


Not Alone

By edriscoll, in Member Stories,

By Kathleen McCullough
March 2005
When I began college, I was very healthy. At the middle of the first semester of my freshman year, I started to feel odd. I was tired all the time, felt sick, and had a low fever. I went to the student health center, and without doing any tests, they told me I had a sinus infection. I went on 6 rounds of antibiotics which took several months. I had a different doctor every time, and my symptoms seemed mysterious and random to them. I was light headed, peed constantly,  was tired, had nausea, would wake in the middle of the night gasping for breath, had a fever but was always cold, and would pass out sometimes when I stood up. Eventually I went to the ER. I had passed out twice in the past few days, and my hair had started falling out. Unlike most college freshman, I had actually lost weight. The doctor told me I had a hormonal problem and on the way home I cried. I had to stop to sit down because my legs felt heavy and I was lightheaded. I wondered if I was crazy. My roommate had started to call me a hypochondriac. Was I?

One night I woke up gasping for breath and horribly nauseated.  When I got up to go to the bathroom, I blacked out. I found myself on our carpet, sobbing.  I knew I had to do something.  My system was a mess from all the antibiotics, and my parents were concerned.  My Dad was going to the Mayo clinic for his heart problems over Christmas break, and they took me with them.
The first doctor I met with was my Dad's heart doctor. I told him my symptoms, and he picked up on something. It turns out his daughter has POTS. He took my pulse and blood pressure seated and then told me to stand up. I didn't know why, but he took it again when I stood. He then told me I would need to do a tilt table test. He also told me my blood tests were back and I had Mono. All this time I was told I had a sinus infection, I had Mono. It had affected my brain, I guess, and now I might have POTS.
The tilt table was OK at first, and then they tilted me all the way up. I felt like I was going to die. It was the worst I have ever felt in my life. My blood pressure went to 70/40, and I said please let me down.  I really felt moments from death. When my blood pressure was that low, my pulse was sky high. My diagnosis was made. I was put on Zoloft, which had helped some patients, and put on a high salt diet.  Some of my friends still didn't believe that I had a problem because I was mostly functional.
It's been four years since my diagnosis, and some of the symptoms have amazed me. I have an absolutely horrible memory, I have to write everything down, and I often lose my train of thought in mid-sentence. I'll remind myself to tell someone a story, and then it's gone. I make lists, but forget I made them. I still urinate way too often, and have trouble sleeping. My hands and feet are always freezing while the rest of me is always warm, and when I wake up I'm covered in sweat and my hands are asleep. My heartbeat is sometimes irregular, and I have IBS and trouble swallowing. I am unable to tolerate any antibiotics, I think because of the many I was prescribed on my way to a diagnosis.
I wondered a lot of the time if there was something wrong with me, if I should just hide what I was feeling because they didn't seem to go with any illness I knew, but I'm glad I didn’t hide it. Now I've found a place where I can cope with my illness, and know I'm not alone.

By Janis Bell
October 2004
The following story discusses many alternative treatments. The Dysautonomia Information Network is in no way endorsing or promoting these treatments.
Since 1994, I had mild orthostatic intolerance. My primary diagnosis was chronic fatigue syndrome, and I only failed the tilt table test after being given an injection. Then in January 2000, I went to Arizona on a retreat and was advised by the MD there to undertake a one week fast of fruit and vegetable juices. Although I felt great during the fast, three days afterwards I began to develop a bad case of orthostatic intolerance (POTS). By the end of seven weeks I was depressed, tired, anxious, irritable unable to think and unable to walk or work. I tried to avoid sitting and standing as much as possible. It was so bad that I had to hire a home health company to help me make dinner. Other times I would sit in my desk chair and wheel around the kitchen.
I already had a strong yoga practice and had begun teaching at this time. I discovered that, although I could not even sit for meditation without getting dizzy and having my heart start pounding in my chest, I could still do yoga. The upside-down poses like headstands and shoulder stands really helped me to regain a sense of balance as they brought blood to my head and reduced or eliminated my pounding heart. I also spent more time relaxing then I ever had in my life.

This is what I would do when my POTS symptoms started acting up:
First, I would lie down flat on my back and start breathing deeply. I would concentrate on expanding the lower ribs out to the sides and filling the back with breath. Then I would move into the "legs up the wall" pose (Viparita Karani) with a folded blanket or bolster under my pelvis. This pose raised my legs above my pelvis, draining the pooling blood from my painful legs. I'd stay in this pose at least until any increased pressure in my head had disappeared.
Afterwards, I would move into a supported shoulder stand, often starting on a sofa or a chair. I would gradually lower my head and back until I was resting on my shoulders. Shoulder stands are supposed to be done with the cervical curve in the neck, but I found that by extending the neck and pressing against the back of the occiput (where the skull and neck meet), I would begin to relax and my breath would naturally deepen. Most of the time I left my legs leaning against a chair. Sometimes, as I felt refreshed and energized, I would take my legs fully into a vertical position, using the muscles in my upper arms to press down against the floor and help lift my torso. I also found that a headstand worked miracles when my POTS symptoms would start flaring up. I let go of my fear of being judged by others, and I would go into a headstand while waiting in airports and other public places. The pressure on my head seemed to help a great deal. I don't know why, but I know that it worked for me.
As I used yoga to restore myself to balance as needed, I also explored nutritional approaches. I tested positive for milk and gluten sensitivities. I then eliminated them from my diet, having believed that my body reacted to milk and gluten by developing insomnia and feeling stressed out. I felt healthier by eating fewer sugars and starches and more healthy fats. I believe I eventually made good progress by following an alternative medicine program designed to detoxify the nervous system and eliminate neurotoxins. I suspect that neurotoxins are a principal cause of POTS, but I have no proof.
I also worked with an alternative medicine program to balance my endocrine system. Through it, I was taught that my cortisol levels were defunct. When light was shined in my pupils they couldn't hold the contraction for even a second. So I began to support my adrenals with a diet I believed would help, and with glandulars and hormone precursors that I believe enabled my body to make adequate amounts of cortisol at the right time, as well as making healthy amounts of estrogen, testosterone and progesterone. I was getting closer to recovery, but I still could not stand on my feet for more than 30-45 minutes without getting tired.
I had visited numerous MD's and received special stockings. I had refused to take SSRI's because I did not like the way they made me feel. So I began to study natural medicine.
I got my NMD degree and had a test on my neurotransmitter levels. I found that I was low in serotonin  and epinephrine, while high in norepinephrine. I started taking natural supplements to raise serotonin and gaba. I also worked to help my norepinephrine and epinephrine levels through diet and supplements.
I'd greatly improved by the first neurotransmitter retest. I haven't done a second retest yet, but my moods are great, I'm sleeping better, and I rarely feel the fatigue in my legs that used to be my constant companion. I'll send an update when and if I get my norepinephrine and epinephrine levels balanced properly.
This past spring, a few months after working to balance my neurotransmitters, I decided to try something novel since I had exhausted nutritional approaches and was still unable to exercise. The beautiful warm weather had me longing to be outside again, taking walks in the country and riding my bike as I'd done before the fast in 2000. So, I took a chance and drove to Southern Ohio to explore an alternative treatment, sound healing. What a great blessing this was to me!
The people there spent more time with me than any doctor ever had--about 8 hours at my first appointment. They tested my voice, analyzed it on their computers, discussed my symptoms and treatments, etc. They finally put together a program of tones and had me listen to them a few times in the evening before sleeping, and the next morning as well. They retested me in the morning to see if I was improving, and sent me home with a box that generated my "personal healing tones".
The first day home I felt myself detoxing (slightly achy, flu like) but the symptoms would go away if I didn't listen to the tones. So I was able to control how rapidly I detoxed. The next evening I walked into the kitchen at 10 p.m. with the intention of making gluten-free cornbread! I had that much energy in the evening and, fortunately, had the good sense to restrain myself and go to bed instead.
Two days later, I was visiting my parents in West Virginia, and I went on two hikes. I had to rest often, but I still hiked up a mountain for over an hour, across a ridge for 30 minutes, and then down again. I was not a basket case when I got home. Since that time, I have been continually working with new sound tones as my body shifts. I resumed biking and I had my first active vacation in years this August when my husband and I went kayaking and hiking in the Catskills.
I still find that I get a little more fatigued than I'd like, and that I get an ominous pre-POTS feeling in my legs if I stand when I'm tired and hungry at night. But I've measured my blood pressure and pulse, and I'm no longer getting the shifts that led to my POTS diagnosis. Now I can lead a somewhat closer to normal life, and I'm happier than ever! I hope everyone reading this can heal fully. Never give up. Trust your instincts. And empower yourself with knowledge about your body and mind.


My New Son

By edriscoll, in Member Stories,

By Melissa Zoepfl
October 2004
This is a story about my son Mark. Mark is 11 years old and very bright. He started middle school this year and is in all honors classes and is taking 8th grade math as a 6th grader. He is also on a travel soccer team.
A few years ago, Mark's teachers suggested that he be evaluated for Attention Deficit Disorder--that he wasn't always well focused or organized. He was evaluated, diagnosed and put on medication. While he seemed a little better, he was still a kid who day-dreamed and needed a lot of reminding. A year or so later, a coach noticed that he was breathing hard when he ran and suggested he be evaluated for asthma. He was evaluated, diagnosed and put on medication. He seemed a little better, but he continued to be short of breath during activities. The doctors continued to adjust his medication, but he never had dramatic improvement. I watched him closely last spring at sporting events. It seemed to me that he really struggled to run. He had a pained look on his face and seemed to take a long time to get his breath back. He was clearly trying very hard, but he wasn't able to keep up with his peers on the soccer field. I asked our pediatrician if we should consult a cardiologist. I knew that somehow he wasn't getting enough oxygen, and if it wasn't his lungs failing him, maybe it was something to do with his heart. Our pediatrician didn't think it was time to do that, and he suggested we try adjusting the asthma medication yet again. We tried, but there was still no improvement.

Our insurance allowed us to go to specialists without a referral. I finally decided to follow my intuition and made an appointment with the pediatric cardiologist who was closest to our house and in our insurance plan. I wasn't sure what to expect--how would the doctor react to a mother who said that her son got winded when he ran, but had no other symptoms and no referral?
As it turned out, it was a wonderful experience. I was able to get an appointment quickly, and when we arrived, the nurse gave Mark an EKG, and then gave him a test for his heartbeat lying down and standing up. I assumed that was the standard workup for new patients. Then we saw the doctor. I explained Mark's problem running, and he said he already saw something that could be causing it. He showed me the numbers for Mark's heart rate--80 lying down and 130 standing up. He proceeded to do an echocardiogram and told me that Mark's heart was just fine. He explained that it looked like Mark had POTS and that it was a circulatory problem caused by his blood vessels not constricting and pushing the blood adequately to his heart. He asked questions to understand his ADD symptoms. He said it was possible that the POTS was causing his lack of focus as well. He said it was likely why Mark always paced when he thought, and took a deep breath just before he spoke. These were actions he instinctively took to maximize the oxygen to his brain. (We found out later that the nurse noticed this breathing pattern and suspected POTS, which is why she measured his heart rate lying down and standing up.) The doctor scheduled some lab work and a tilt table test to confirm the diagnosis.
Mark had the tilt table test, which completely confirmed the diagnosis. He just about passed out within 10 minutes, simply from not being able to move his feet. I was floored. How could my son's circulation be so poor that he can't stand for 10 minutes and I had no idea? The doctor had said that this condition is often caused by a virus. Mark had a serious virus when he was about 1 year’s old. If POTS was a result of this, he had poor circulation for almost all his life. I felt terrible.
The doctor prescribed florinef and proamatine. The effect of the medicine was remarkable. Almost immediately, we noticed a change in Mark's focus. He would remember things we asked him to do--even when we asked him to do something later in the day. He seemed much more in tune with the activities around him--in conversations, in watching sports, in whether it was time for him to get ready, whatever was happening. He had always been a bit oblivious to things around him, but I assumed it was just his "absent-minded professor" kind of personality.
He no longer takes a deep breath before he speaks. He still paces a bit, but I think that is habit and it seems to be diminishing. When he runs in sports, he no longer looks pained. He gets tired, but he is much more like a normal kid. He no longer runs moving his head from side to side (which may have been another action to get blood to his brain). His sleeping became much more normal. His whole life he has been a wiggly sleeper--ending up sleeping with his head by the foot of the bed or sprawled sideways in bed. I had always assumed it was just his sleeping pattern. Now he goes to sleep much more easily, wakes up with his head on the pillow, and is cheery and alert. He had always been a bit grumpy and hard to wake up.
Even his posture has improved. I'm not sure how it's related, but he definitely stands up straighter instead of slouching.
In short, it's like having a new son. I give him so much credit for being successful in school and sports for many years when it's obvious to me that he hadn't been getting adequate blood to his brain. Now I think life will be easier for him, and he'll be able to succeed even more.
I feel so incredibly grateful that we happened to walk into a cardiologist's office that specializes in POTS (that was completely luck or maybe a guardian angel). I have now read so many stories of people suffering much more severe symptoms and wandering from doctor to doctor for months or years. I am also so thankful we caught this now rather than years from now. I think that may be why the medication is working so well. The doctor feels that Mark will not need to be on the medication forever--maybe for several years at most. He will continue to monitor Mark and encouraged him to continue in sports. If he continues to stay so focused, we will talk to our pediatrician about coming off the ADD medication. I'm so glad this story has a happy ending--I just wanted my son to be able to run more easily, and I ended up with a treatment that is making every aspect of his life better. Hurray!!

By Lori
June 2004

It was the best year of my life.  I was a new homeowner who was married to the man of my dreams with a step-son that called me "Mom".  On top of that, I had a wonderful job working as an Ophthalmic Assistant for an Ophthalmologist, and I was enjoying playing volleyball, sky-diving, hiking, riding a bike, plus I had great friends and a wonderful family.
One month after we got married, I started getting dizzy and having rapid heartbeats. It felt like my heart was stopping and starting back up again.  I saw a physician who gave me a couple of test and said that there was nothing wrong with me.  He said it was all in my head, and it was just anxiety.  They tried to make me believe that with a little paxil and a good counselor I would be fine.

Things were getting worse, the multitudes of symptoms were becoming debilitating and making me very sick:
These symptoms have been a part of my nightmare for almost two years now.  Some days are better than others.
I have been diagnosed and misdiagnosed, poked, prodded, invaded, questioned, opinionated, and told.   Sometimes I am believed, and sometimes I am not believed.  Friends have been lost and gained.  Every day I am tormented by this condition that they are now calling Primary Dysautonomia and told more will be revealed in time.  I am told that treatment is given only as the symptoms occur, and then I am told that I will be sent to another specialist that specializes in this condition in hopes some relief can be given.  I have also been told that this condition can either be a mild to moderate inconvenience in life or progressive and fatal.  “No one really knows,” is what I am told.
Accept it, take it one day at a time, and live the best you can is the advice I get.  I do my best with this, but some days are so depressing because the pain is so bad that all I can do is focus on getting out of it.
Every day I ask why?  What am I doing wrong?  What have I done wrong?  What is causing it?  Some days when I feel better I think I am cured and life will be getting back to normal, and then BAM another slap in the face, symptoms are back, and I feel like crap.
I struggle with this every day and only hope that it will eventually subside.  At this time, I really don't know what is going to happen; however, I know that everything in this world happens for a reason.  I am just grateful for this day that I have.

By Laurie Thomas
May 2004
Thanks, POTS Place!
I have had POTS and debilitating chronic fatigue for several years. Like many people with those conditions, I have been dismissed as a hypochondriac. More likely, I am probably a mitochondriac (a person whose mysterious illness is actually the result of a mitochondrial problem). I've been steadily improving over the past year, ever since I started taking 500 mg of thiamine (vitamin B1) per day. I tried the thiamine after reading about a woman whose chronic fatigue was due to beriberi (thiamine deficiency), because she couldn't absorb thiamine from her food. Well, my thiamine level was normal, but I felt dramatically better the day after I started thiamine supplementation. I take the thiamine with a garlic pill to make the thiamine lipid-soluble. I also take 800 mg of magnesium (as magnesium oxide) every night. I'm now off the fludrocortisone and the metoprolol, and I don't have to eat 5,000 mg of sodium every day. Okay, so I'm still not back to "normal," but I am much better than I was. Strangers no longer stop me in the hallways at work and ask me if I need to be escorted to the nurse's office.

I had been improving steadily until early March, when my blood pressure started to go to heck again. My resting pulse while standing was 120 bpm one morning, 130 bpm the next, and 150 bpm the day after. I started waking up in the middle of the night with a raging thirst. Something was definitely wrong. Plus, I had this "cold" that seemed to be getting worse and worse. My husband was pressuring me to make a doctor's appointment, but the only doctor I've found who understands POTS is a nephrologist who is no longer in my health plan. So I went to the POTS Place Web site to see if I could find someone else who could help me. While I was there, I checked out the "what helps" section. One thing I hadn't noticed before jumped out at me:
    Treating allergies might help one to feel better. It has been reported that people with POTS lose their ability to vasoconstrict (Grubb, 2000). This means that many POTS patients have problems with their blood vessels being excessively dilated. Histamine is known to dilate blood vessels, which can further lower blood pressure in POTS patients.
    Allergies may also stimulate the sympathetic nervous system. Many POTS patients have overactive sympathetic nervous systems and benefit from avoiding potential sympathetic stimulants. 
Wow, allergies! What a concept. I got some over-the-counter generic loratadine and some cromolyn sodium nasal spray, and my pulse went back to normal within 48 hours. So, thanks POTS Place. I was able to figure out the cause and solution to my problem much faster than I could get a doctor's appointment. A friend of mine, who is a doctor, said that by the time I got an appointment the pollen counts would probably have dropped, and I'd have looked like a hypochondriac again. Several physicians have suggested that I am actually the picture of health and just go to doctors' appointments for "attention," or that I am just "depressed." I am not depressed. I am frustrated by the devastating toll that this illness has had on my life, my family, and my career. I am not "desperate for attention." I am desperate for proper medical care. The next time I go in for an appointment I'll take a printout of stuff from the Web site with me!

  • Create New...