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 Stories
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Ideas and opinions expressed in
Personal Stories belong to each individual author and are not necessarily those
of the Dysautonomia Information Network. Personal Stories are in no way a
substitute for professional medical advice, diagnosis or treatment. Readers
should not try any treatments discussed in Personal Stories without first
obtaining a physician's approval.
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One
of the Lucky Ones |
Barb's
Story |
Heart Story |
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Dave's
Story |
Julie's
Story |
My
Dysautonomic Destiny |
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Sandra's
Story |
Janet's
Story |
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Wish
Upon a Star |
Chiari
Malformation |
Jennifer's
Story |
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Bridgette's Story |
Emma's Story |
Confessions of a Mitochondriac |
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Lori's Story |
Katherine's Story |
Nightmare, Will I Ever Wake Up? |
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A
Cross Country Adventure |
Kathy's Story |
My New Son |
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Karen's Story |
Debbie's Life in a Not so Nutshell by Debbie |
Learning Patience |
| Stories page 7 | Stories page 8 | Stories page 9 |
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Not Alone by Kathleen |
No, it's Not Anxiety by Brenda Richardson |
Medical Field Worker Perspective.... by Phyllis |
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No, Your Machine is not Broken by Lauren |
Never Accept the Unacceptable by Kylie Murray |
POTS Recovery by Kerk |
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I Didn't Ask for This! by Vanessa |
Christine's Story by Christine |
Karyn's Story by Karyn |
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Doors Keep
Closing by Amy Van Der Kamp |
Ever Been
Hit by a Wet Kipper?
by Lady Amelia Noble |
My Life As I Know It Now by Lisa |
| Stories page 10 | Stories page 11 | |
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Living with a Nightmare, POTS by Karen Brank |
Pure Autonomic
Failure: My Story so Far by K. Webster |
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My life after Gastric
Bypass... by Peter Maerkel |
Gail's Journey by Gail |
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Candace’s Story by Candace |
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One Day at a Time by Sue |
Not Alone
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.
No, Your Machine Is Not Broken, My Heart's Really Beating That Fast
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.
I Didn’t Ask For This Life
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.
Doors Keep Closing! Will One Open Up For Me?
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!