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Nicole · Joined: 25 Oct 2007 Posts: 19 Location: Gulfport, MS

The following was written in June 2007

Well my story starts when I was 22 years old. I worked in the emergency room as a
technician. I started feeling really short of breath one day during my shift.
I was rushed to a room. The emergency room physician came in and thought I was
in a heart arrythmia called SVT(supraventricular tachycardia). I was given a
medication called Adenosine. It tries to convert your heart rhythm back to
normal. It feels like your heart stops and restarts again. This medication did
not work. I was able to go back into normal sinus rhythm. I then was referred
to a cardiologist.

My cardiologist ran numerous tests including a holter monitor, lab work, ekg,
and echocardiogram, which all came back normal. It was assumed that the problem
was SVT. So I was put on many cardiac drugs which made me feel worse. I
started then to have syncopal episodes. I had a tilt table test that came back
positive. Then eventually I was referred to a electrophysiologist. I underwent
a EP study (electophysiological study). The doctor wanted to place a pacemaker
and do a ablation. I did not want that. God was watching over me because from what I have read on the potsplace website,
ablations can be detrimental to POTS patients.

I kept feeling worse and did not have any answers. I sort of knew that this
heart arrythmia was not my main problem. I was told that the reason I had this
problem was because I did not exercise. Even though before this started, I was
very athletic. I was involved in dance and martial arts. I could not exercise
anymore. The more I tried the worse I felt. I showed the cardiologist my
weight gaining pattern since I started having problems. He felt that exercise
was the answer to all of my problems.

During my second pregnancy I was admitted to the hospital for a rapid heart
rate. During that stay when I stood up my heart rate would jump up to 170. A
normal heart rate range is 60 to 100. By that time I had gone through 3
cardiologists, because I was not getting any answers or getting better. I had
seen him for the first time just before I was admitted to the hospital and of
course I had all of the cardiac testing you could imagine. Just before I was
discharged out of the hospital my new cardiologist sat down and looked me in the
eye and stated "Nicole, I believe this is anxiety. Don't worry many women have
this. My wife had the same thing when she was pregnant. When you have your
baby, I will put you on medication for your anxiety." I looked at him in
disbelief. I remember thinking "Is this for real?"

At that point I was infuriated. My thoughts were "Well, would be scared if you
stood up and your heart started racing like that? You would be fatigued if your
heart rate was elevated all of the time. It is like you are running in a
marathon every time you stand up but your not going anywhere." My OB GYN did
advise me to find another cardiologist. I am so glad he did that, because I did
start feeling like this was all in my head. I started questioning every symptom
I had. On the other hand, I felt that I did have a anxiety/depression
component. It was the problem that was causing the anxiety/depression not
anxiety/depression causing the problem.

On the other hand I thought of all of the people out there that have been
misdiagnosed. Most people have 100% confidence in their physicians. I just
want to say that no one is perfect. If you feel like the diagnosis a doctor is
incorrect get a second, third, forth opinion. I had to go through 6 doctors
before I was correctly diagnosed.

I found another cardiologist. He said he felt that I had orthostatic
hypotension and it is only treated with florinef or proamitine (not both). I had been
looking on the internet at different things. Everytime I searched, POTS kept
coming up. I told my cardiologist about this. He hadn't heard of POTS. I
kindly asked him for a referral to see a specialist I found on the internet. He
was reluctant because he felt that orthostatic hypotension is a cut a dry
problem. I could tell he was upset because it was like I was questioning his
knowledge. Actually orthostatic hypotension is a component of POTS in some
patients.

I just recently saw the specialist. It was the best experience I have had with
a physician. He understood everything. He explained why all of these symptoms
are happening.

I remember seeing physicians in the past. I would cry at almost every
appointment. Now I realize why. I felt so alone and helpless. I have had POTS
for 9 years now. I have new symptoms regularly. I did not realize that this
syndrome could be debilitating at times. Even though I have felt that way
numerous times.

POTS affects my in all aspects of my life. FAMILY- I can only hold my children
at very small increments of time less than a couple of minutes. I have a hard
time giving them baths. It takes me a long time to do that. After working all
day I usually go straight to bed because of the exhaustion. My children beg me
to play. I can not play outside with them because of the heat. I can not do
many household chores which affects my husband after he works 12 days, 5 days a
week. If I am having a good POTS day I am able to clean a little but for
example it took me all day to clean out my children's closets. All I did was
throw away old clothes. The next 2 days after that, I was in bed. I am lucky
though because I have a loving and supportive family.

WORK- I have to miss a lot of work. Which is not good. I feel like I get
looked and frowned upon. I was once asked by my boss if I was depressed. That
is when I was going seeing the anxiety/depression doctor. At that point I did
think that is what was wrong with me. My absenteeism is watched very closely.
I understand the point of view that my boss has. Luckily I am able to work from
home. So on my bad days I can lay down. On the other hand, sitting up for me
can be hard. Sometimes I feel like I am holding on by a string. I try to be
that team player like I used to be but I just can't keep up anymore. I push
myself to work because if I left I wouldn't have any medical insurance benefits.
I am lucky because at least I have a job.

INSURANCE-If I quit my job, the insurance company probably wouldn't cover me
because of preexisting problems. I am fighting with my insurance company now to
cover me seeing this specialist. They feel that any cardiologist in my network
can treat me. So they are not covering these visits. My specialist also wants
to do a special tilt table test were they do different things during the tilt.
It should show where the dysautonomia is coming from ( I think-can't remember
the particulars--brain fog). They don't have this at the covered hospital my
insurance covers. So I can't get that test at this point because of financial
reasons. I feel lucky though because at least I have insurance.

FRIENDS- I feel like most friends don't truly understand. I have had a friend
say "Nicole you don't look sick." I just cried when I heard that. I do not
want to look sick or be sick at all for that matter, but I don't want people
thinking I am fine and there is nothing wrong with me. It is hard to balance
things like that. I have lost friends because they thought I just didn't want
to hang around them anymore.

MENTALLY- I question every symptom. I get depressed. I get angry because it is
so hard for me to explain my emotions and how I truly feel. I try to stay
positive but then I have a breakthrough symptom and I fall to a low point again.
I have anxiety because I think "What if I go into this store and pass out? What
will happen if I pass out at the wheel with my children in the car?" It is hard
not to think like that. I don't do that all of the time. I have been told
that I may grow out of this, but I have had POTS for 9 years. How long does it
take to grow out of it? When do I accept that I will have this for the rest of
my life? Some days I feel disabled, some days I don't. So it gets very
confusing and scary.

PHYSICALLY- I am weak, fatigued, sleep all of the time, insomnia, purple
feet/legs, dizzy, brain fog, restless leg syndrome, tachycardia, sweating, short
of breath, chest pain, abnormal spacial awareness and the list goes on and on.
I have to accept there are many things I can't do anymore. Do I accept these
things then feel like a failure? That question is what is holding me back from
accepting this.

I feel in all aspects of my life, I am constantly being judged. I do not know
how to deal with that yet.

I am grateful that I have found a support group. Just knowing that there are
others out there with POTS is very comforting because they understand what I am
going through.

Update October 2007

I have had some major setbacks. I am still keeping my positive outlook. I always try to keep my happy face on.

I have developed SVT again. I have been in the hospital. I have been out of work on medical leave. I use my wheelchair on a constant basis because of having syncope and extreme fatigue. I am not to do the things that I could back in June. I thought I had it bad then and realized that it could definitely be worse.

My employer called and stated that they will have to terminate me at the end of this month. So there goes my medical benefits. I am trying not to stress. I have grown a lot in my faith. I feel that everything will work out. I just I have and keep the support of others around me. I have been truly blessed because my mother has moved into my household with my family. We (my husband, 2 children, and myself) really need her. I am unable to do a lot of things. She is able to help out so much. Especially with the kids. I don't know what we would do without her.

I just want other POTSIES to know to STAY STRONG. Everything happens for a reason. God will let each of us see what that is one day and until then we should all keep our heads held high and try to always find the positive things in our lives that we are thankful for.

I hope all is well. HUGS!!!! God Bless!!!!
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*Nicole*
POTS, SVT,atrial tachycardia, chronic fatigue, insomnia, NCS, low potassium, lower esophageal rings, IBS, gastroparesis, insomnia, fibromyalgia, and others

Have a blessed and wonderful day!!!! HUGS and LOVE

sarah smile · Joined: 25 Oct 2007 Posts: 33 Location: Greenwood, SC

i really hope that you bounce back really soon!

thinking of you and sending you daisies,
sarah flowers

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POTS, NCS, IBS, GERD, hiatal hernia, erosion of esophagus, inflammation of the intestines, possible GP, anemia, hypovolemia, refractive error hypermetropia, multiple sleep disorders, bladder dysfunction, and others...