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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.

Living with a Nightmare, POTS

by Karen Brank, Toledo, Ohio
July 2007

Hello! I am a 37-year-old African American female who was diagnosed with POTS in July of 2005.

In 1997 I began having health problems. I was also under a tremendous amount of stress in my job at a mental health agency, a single mother, and in graduate school. My job was so demanding. I had to work 12-16 hour days to get everything done. Soon after my health problems began, my supervisor moved to a different department. I got a new supervisor, and she was not supportive.  She allowed a new co-worker to be verbally abusive and rude to me and never did anything about it, even though I tried to do things to help resolve the matter. I began to have heart palpitations, chest pain, muscle pain, low energy, dental problems (swollen gums, constant bleeding, and pain), headaches, urinary tract infections (blood in urine), as well as insomnia. I did try to exercise 3-5 times per week but noticed that I could not do it due to lack of energy and neck pain. I felt as if I had pulled a muscle in my neck.

In 1999, I transferred to a different department at work, but I still experienced stress from management. From my experience in the mental health profession, most of my supervisors were culturally insensitive and held a superior attitude. My migraines became worse; I also suffered dizziness, very low energy and fatigue. My doctor informed me that I had tested positive for Epstein - Barr virus. I was placed on lorazepam to help with sleep. I had previously felt wired but extremely tired because I could not sleep.  I had some nausea almost daily. I was a size six, and I began gaining weight; by the end of the year I wore a size 14. I was taken off work for 30 days. In that time I was able to find another job.

The new job was in a faith-based organization. Unfortunately, I had to take a $5,000 pay cut. During my time at this organization I was very ill.  However, I did not have to work long hours and the work was very light and not stressful. I still was fatigued, had low energy and continued to have problems with my gums and teeth.  (I was diagnosed by my dentist as having the early stages of gum disease.)  I also had headaches, muscle aches and chronic urinary tract infections that led to some kidney infections.  I finally just stopped going to the doctor because I felt he was not helping me and not returning calls when I needed appointments.

I graduated and received my master’s degree two months after I began working at this organization, but my pay rate did not increase. I was very disappointed. I began looking for another job due to financial reasons.

I found a job at another mental health agency. I got a $7,000 pay increase, but the stress, verbal abuse, and discrimination began again.  Once more I began working long hours to get all my work done. I started to suffer different symptoms this time. I was fatigued and lightheaded with dizziness, almost to the verge of collapse.  I had high blood pressure (i.e. 140/100), back pain, and swollen feet (with pain).  I was unable to eat due to nausea, vomiting, heartburn, gas, bloating, and loose stools. This caused my weight to fluctuate. I felt thirsty and had a dry mouth. I was also unable to sleep (along with feeling wired).

I was able to transfer to another job within the same agency. This time I got an excellent supervisor, but I still had to work long hours to get everything done. With this job I had to go into clients’ homes. I noticed that I developed a persistent cough (when going into certain homes), eye allergies, and chronic sinus infections. In 2004 I lost weight, maybe ten pounds at first, and experienced persistent vomiting. I started to lose weight very rapidly. I went from a size 14 to a size 8.

In 2004 I got a new doctor due to insurance changes. It was a blessing in disguise. I was diagnosed with fibromyalgia. I was given an MRI that found degenerative disc disease. I also began losing my balance and falling, but it was not happening very often. I just thought I had tripped over something.

In 2005 I got married. My new husband took me to Baton Rouge, Louisiana to meet his mother. Unfortunately, during the trip I developed food poisoning after eating at a restaurant. I felt nauseated for almost two days, had some loose stool (lost control of my bowels one time), felt very weak, fatigued, and had trouble walking (along with balance).

When we returned from Louisiana I knew something was wrong with me. I could barely walk; I kept falling down.  I had pain everywhere and extreme weakness all over my body. One night, I came home from work and I fell down three times. My husband took me to the hospital and I was admitted.

After I was released, I was falling down five or six times per day. I needed assistance walking and needed to use a wheelchair. A few days later my doctor diagnosed me with POTS. He sent me to a cardiologist, Dr. Blair Grubb, to confirm the diagnosis. Dr. Grubb said that I was suffering from muscle wasting, orthostatic hypotension, and dysfunction of the autonomic nervous system.  I had a positive tilt table test. He believed my case of POTS was due to another underlying medical condition because POTS is extremely rare in African Americans. He thought that I had a metabolic disorder called mitochondrial cytopathy, but I tested negative at the Cleveland Clinic.

I was seen by several specialists at Cleveland Clinic. I have been diagnosed with IBS, migraines, sleep apnea, asthma, and allergies. I also have peripheral neuropathy. My face, hands, and feet feel as if they are burning and throbbing.  I get temporary paralysis. I also get stabbing, shooting, and aching pain. This is very debilitating. I have trouble walking, climbing stairs, or lifting anything more than 5 pounds. I also feel disconnected from my family and friends because I feel like a prisoner in my own body.

I also had to have a hysterectomy because I had two fibroids as big as grapefruits and one large cyst. I was in constant pain for months until a Cleveland Clinic OB/GYN took away the misery and pain. I did end up in intensive care after my surgery because I went into respiratory distress. I had asthma and did not know it at the time.

My husband and I divorced a year ago. He was never supportive of my illness. He was also angry all the time as well as physically and verbally abusive.

I have not worked in almost two years. I suffer from severe dizziness that makes it impossible to stand up, and nerve pain along with IBS. I have constant vomiting, and I could have gallbladder disease. I may have to have another surgery. I am currently working with a vocational rehabilitation counselor to return to work.

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My Life After Gastric Bypass...

by Peter Maerkel
July 2007

Hello, my name is Peter Maerkel.  I am 40 years old at the time of this writing.  I have POTS.  I was diagnosed October 20, 2006 at St. Francis Hospital in Hartford, CT.  This is my story.

I have been overweight all my life, starting shortly after puberty.  I am 6’5” tall, and in August 2005 I weighed 412 lbs.  I was out of work from my lucrative job at Kaman Aerospace as an NDT inspector.  (I did x-ray and ultrasound on aerospace components.)  I was on Social Security Disability for two herniated discs in my back.  I had terrible sleep apnea (93 episodes in an hour during my sleep study).  I was also pre-diabetic and had been told my knees would need to be replaced sooner than normal due to my weight.  Yes, I had tried every diet known to man.  Nothing worked.  So, I started down the road to a gastric bypass.

I remember my weight in August 2005 because that was when I signed the documents to start the gastric bypass process, and they needed my exact weight.  Well, on December 29, 2005 I went under the knife.  The surgery went extremely well.  There were some minor issues, but nothing to worry about-- so I was told.  You see, I had done a ton of research online and asked a bunch of (what I thought were) well informed questions.  Even my surgeon was impressed and told a medical student, “This is the type of patient you want-- one that is well-informed.”  I did not go into this blindly.  I had many discussions with my PCP (at the time), and he told me, “If I were sitting where you are, I would have the surgery.”  He told me, “If you can get over the risks – death being the big one, it will be OK.”  This was partly true, partly not, as I now know.  You see, in all the research I had done, I had never once read (or heard) about getting potential nerve damage or POTS from losing weight so fast.  Now I know.

After the surgery, the weight started flying off.  I was offered a full-time sales job by my brother-in-law.  I jumped at the chance.  My back was doing great because I had lost about 90-100 lbs already (which put me at around 300 lbs).  During this time, my regular post-op follow-up blood work started showing some vitamin & blood deficiencies.  I won’t bore you with the details, but I was growing concerned.  My wife, who was finishing her second year of nursing school at the time, was concerned too.  I brought these concerns to my doctor and was told that I had nothing to worry about.  I had adjusted my vitamin intake per the dietitian’s instructions and had gotten the OK from my doctor that all was well.  So, I went off into my new career.

In late May, just about a month after I had returned home from sales school in Atlanta, GA, I heard my daughter fall from her top bunk and hit the floor hard (big girls don’t need the bar to hold them in).  Well, after getting in there and finding her sobbing, I stood up and felt very faint.  I reached for the bar I had reinstalled but didn’t make it.  I don’t even remember hitting the floor.  The next thing I remember, I woke up to my oldest daughter screaming at the top of her lungs, “Daddy! Daddy!”  Apparently, I had been unconscious about 30-45 seconds and unresponsive with my eyes wide open.  When I got to my feet, I told my wife and the paramedics that I felt OK.  I was not going to the hospital for fainting.  No way!  They told me that they had to report this to my PCP and that I should follow up with him as soon as possible.  I did.

When I saw my PCP, he ordered a Holter monitor for me.  The test results took a while to come back, and I was told that it was basically normal.  As I later discovered, this was not exactly true.  The averages were normal but there were many abnormalities in it.  During the month that I waited for the report to come back, I had several near syncopal episodes which I discussed with my PCP.  I was told at the time, “When you feel lightheaded or dizzy, put your head below your heart.”  Yeah, I thought, like you can live like that. 

Well, that is what I did.  I followed my doctor’s instructions and proceeded to get on with my life and great new career.  The money was great, and I was on track to be one of the top new salespeople in the entire company (part of a multi-billion dollar company).  I was living the American dream-- notice the past tense.  By the end of September, life as I knew it was over. 

I had gotten down to 226 lbs by early September 2006.  I had lost a total of 186 lbs since August 2005.  I was virtually half the man I had been.  I had some problems with vomiting.  I was sent to see a GI doctor at St. Francis in late August, and they found my pouch had some scar tissue that they just expanded with some balloon-like devices.  By Labor Day I had a new (new to me) truck, and I thought life was great.  There was no more hand-to-mouth existence on SSDI.  I had satellite TV and was working my butt off, literally!  So, as a new person, I did some things I had not dreamed I would ever do again. Now I could go to the fair and ride on rides, like I did in my youth. This time I did it with my children.  I felt great, at least for a while.

The first ride was not too bad; the second and last rides did me in.  When I got off of one ride (that flips you around head over heels) I felt sick.  I thought this was natural.  I told myself that what I was feeling was totally normal.  It wasn’t.  I had the effects for about five hours after the ride. 

By mid-September I was in an inpatient psyche ward at my local hospital for anxiety and suicidal thoughts.  It was during that first ER visit and subsequent inpatient stay that doctors started to notice rapid BP and HR changes when I stood up.  I was discharged and thought the worst was over.  Boy, was I wrong.  It was just the beginning of my troubles.

I went back to the ER about one week later for chest pressure/pain and head rushes.  It felt like blood was just pulsing through my head!  I was really in bad shape.  My PCP told me that they might have to put in a pacemaker because my HR was so low.  It had gotten down to 32 beats per minute.  I was throwing PVCs all over, and at one point they thought I had heart block too.  The decision was made to implant the pacemaker and “fix the pump.” 

The arterial lead moved after the first surgery, so I had to go back for a second surgery to fix it.  After about three days in the ICU they were going to send me home, but they were still concerned about the massive BP drops I had when I stood up.  I believe my blood pressure got down into the 70/30 range at one point, so they gave me fluids to see if that would help.  They gave me 1000 cc of saline and had me stand up.  That was a big mistake.  My face, as I was told, went white as a sheet. 

I went to another hospital to see if they could figure out what was wrong with me.  The hospital I went to was the same one that had performed the gastric bypass – St. Francis.

I stayed there about three days and had many tests done.  Their conclusion: I was starving to death due to the gastric bypass.  Of course, since they were doctors, they called it “nutritional deficiency.”  They ordered me to see their in-house dietitian and work up a meal plan that included 100 grams of protein per day.  I was out of the hospital in less than a week.

Dizziness, lightheadedness, chest pressure/pain, and wild BP changes sent me back to the ER again.  I was really stumping the local doctors.  It would almost have been funny if I had not been so sick.  During my second day in the ICU, I had a non-sustained VT run of about 37 beats.  The VT triggered another trip to St. Francis for a heart catheterization to check for blockages.  No blockages were found.  However, this time I had a different cardiologist than I had on my first trip.  Aside from the doctor who said I was starving to death, a whole team was on my case for awhile. I was starving, but the starvation was only part of the problem.

My new cardiologist was really on the ball and pieced together what he thought was wrong with me.  He ordered a HUT (Head Up Tilt) test for me.  This was one test for which I did not want to have a positive result.  Of course, I did.  “It is positive for POTS.” my doctor said.  My next question was one that many have asked: “What is POTS?”  For the next half an hour, I found out that this little acronym would consume my life for the next few months.  October 20, 2006 was a day that changed my life.

From the day this all started, I have seen approximately 15 doctors in two different states.  The reason for that is quite simple: insurance companies can be a great help but can really hamper care if you have to be “in network” for coverage.  Don’t get me wrong, I am extremely grateful to have insurance.  It just hurts that you have to fight to get covered when you should not have to. 

At this moment, I am awaiting a report from my team of neurologists from University of Massachusetts Hospital in Worcester, MA.  They are trying to determine if there are any other tests that need to be run or therapies to try.  I was on two different drugs that did some good but had side effects that were not good for me at all.  I also tried the compression stockings too.  Let me tell you, as a man, putting on pantyhose is pretty weird, to say the least!  I tell my friends that I am one of the few men you will ever meet who has worn a feminine napkin (as a wound dressing for groin lymph node removal in 2000) and pantyhose.  I am getting stronger.  However, I can echo the words of the founder of DINET, Michelle Sawicki: “I am not the same as I used to be.”  Not by a long shot.  I have no real stamina.  I still get lightheaded.  I get symptoms such as dizziness, chest pain, BP changes, tachycardia, bradycardia, neuropathy in my hands and feet, blood pooling (my hands are freezing typing this), headaches (not as bad now), sleep problems, and other symptoms too.  And that is on a good day.  I am walking and doing most of the housework now.  That is a far cry from what I could do just three months ago!

The real downside to this is my family’s suffering and my shaken faith.  This has really shaken my faith in Christ.  It has not destroyed it, and I am doing better now.  But it has been a long haul, with more to go.  My family has really suffered.  My dad has been helping us with money to keep our house.  Believe me--that is humbling and humiliating at the same time.  

I have had to fight about three or four insurance issues.  These issues range from disability insurance for my truck, which I lost and had to give back to LTD (more humiliation), and LTD, which I lost too.  I am still fighting to get back on SSDI, which I was told would be no problem because they never declared me “not disabled.”  I was just working while I had it.  I have gotten some money from them for the past two months.  However, I stopped working in October 2006 and did not get any money from them until early April 2007.  Then they wanted it back.  Someone had coded me “in prison.”  Again, it would almost be funny if it wasn’t so sad and I was not so ill.  I now have my congressman’s office working on it too.  Hopefully I will have an answer about it today. Further, I have had to ask for food stamps and heating assistance this year too.  More humiliation!

What really hurts is that my wife and I have grown apart, and I can’t play with my children like I used too.  Before this happened I was a blue belt in karate.  I had a new job and a new (to me) truck.  I thought I was moving on to a new me.  Well, that part is true.  I have a new me---but I want a trade-in!

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Candace’s Story

by Candace
August 2007

My name is Candace. I am 18 years old and was diagnosed with POTS/autonomic dysfunction in November of 2006 at the Mayo Clinic in Rochester, Minnesota.  I hope my story can encourage someone.

I was born on March 9, 1989, along with my twin sister Cassie. We were 10 weeks early and my lungs weren’t fully developed, so I was hospitalized until I was healthy enough to go home and be with my sister. I was generally a healthy child growing up. Around the age of 12, I was diagnosed with severe asthma and was put on medication. My asthma was controlled, and things went smoothly as I entered high school. During my fist year of high school, I was involved in many sports. I was in cheerleading, basketball, volleyball, softball and track. I excelled in sports and academics. I particularly excelled in track, going to the state finals as a freshman in three of my four events. I still can’t believe how much energy I always had. I had two sports practices, homework every night, not to mention games and meets.
          
Starting in my sophomore year of high school, I decided cheerleading wasn’t for me. I was moved up to the varsity basketball team and was the main hitter on the junior varsity volleyball team. When track started, I was looking forward to another successful season.

About a week after my 16^th birthday, I was put on Protonix for my acid reflux. After I was on this medication for about a week, I went into anaphylactic shock and was hospitalized in ICU for 3 days.  This was the time when I believe that I developed POTS/autonomic dysfunction.           
I never fully recovered after my anaphylaxis. My performance in track went downhill and so did my health. Near the end of my track season, during one of my meets, I suffered from a severe asthma attack and had to be taken by ambulance to a nearby hospital. This set me back even further.

Throughout the summer and beginning of my junior year in high school, I was unable to eat like I had previously. Before I got sick, I was a bottomless pit. I was always fit and had never had any problems with my weight. I have always been generally skinny. But as the year went on, I developed chronic nausea and lost my appetite. I didn’t feel well enough to participate in the sports I loved, and so I was unable to play basketball and volleyball. I didn’t understand why I felt sick all the time. Many of my friends and coaches looked down on me for not participating in sports. No one could figure out why I wasn’t the “full-of-energy, athletic girl” I used to be.
          
Sometime in October, my symptoms started to get worse. The nausea was unbearable. I lost 20 pounds in about two weeks. By this time, I had been to the doctor countless times with no answers. I was then sent to a gastroenterologist who ordered some tests.  When no answers were found, he told me he thought that I had an eating disorder, such as anorexia nervosa, and that all my symptoms were “in my head.” 

My family doctor continued to look for answers. I was sent to every specialist and had every possible test done. Every time I waited for test results, I would pray that they would bring back answers to why I was sick. But every test came back the same; everything was normal, and I still had no answers. 

After so many tests came back with no answers and everyone telling me that it was “in my head,” I got pretty depressed. I felt like I was going crazy. I didn’t understand how I could barely make it through a normal school day, get home, collapse on my bed, and have it all be “in my head.”

After I had been to every specialist and had every test done that the doctors could think of, they started to look for ways to treat my symptoms, since the underlying cause couldn’t be found. I was started on an anti-nausea medication, and I soon started to feel better. By this time, track was starting, and I decided to give it a try. The season started out slow because I was very weak and couldn’t do much, but by the time the regional competition came around, I was ready for it. I had been praying all week that God would let me perform to the best of my ability in all my events.

On my first jump in long jump, I qualified for the state finals. On my second jump, I broke the school record. I ended up taking first place in the long jump and also went to state in the 800 and 400 relays. Both of my relay teams ended up taking 2^nd place at the state finals, and we took the all-state title. It’s amazing what God can do with our lives when we least expect it.
           
After being on the anti-nausea medication for about two months, it stopped working. I was put on another medication, but it didn’t work either. After dealing with chronic symptoms for so long, I started to get used to them. Being nauseated, dizzy, and exhausted every day became “normal.”  During the summer, I got a job at a nearby Bible camp. For this job, I was required to live at the camp. I worked in the kitchen, and I absolutely loved it.

The summer was going great, my symptoms stayed the same, and I learned to live with them. After a month and a half, I started to develop new symptoms. I started to have chest pain, severe nausea, dizziness and weakness. After a Saturday cookout, I was feeling unusually sick and decided to go see the camp medical officer, who was an experienced paramedic. He knew of my medical history and of my symptoms. He decided to check my blood pressure and found that it was extremely high. I was then taken to the local hospital ER where they did some tests, and again, everything came back normal. I was sent back to camp with no answers.

Over the next three days, I grew increasingly worse. I was barely able to walk, could hardly eat, and started to have blurry vision with my high blood pressure. I also developed jaundice. On Wednesday, the camp medical officer sent me to the hospital where he worked. From there, the hospital’s medical director sent me to DeVos Children’s Hospital, where I was hospitalized for 8 days. This was a very scary time for me. The doctors thought that maybe I had a brain tumor and ran tests to look for one. I had many more tests done, all with no answers.
          
After I was discharged from the hospital, I was sent back to see my family doctor, who in turn sent me to see a cardiologist for my high blood pressure. The cardiologist put me on a beta blocker, which helped with my fast heart rate and high blood pressure. He continued to look for the underlying cause but found nothing. In November 2006, during my senior year in high school, he referred me to a pediatric nephrologist at the Mayo Clinic in Rochester, Minnesota.

On November 19^th, my mom, my grandma, and I set out from our home in northern Michigan to make the long drive to Rochester, Minnesota in hopes of finding some answers. I was excited that I might finally get some answers, but after so many tests and doctor visits with no solutions, I was very doubtful.

At the end of my first week at Mayo, I was diagnosed with autonomic dysfunction and POTS. I was also diagnosed with Gilbert’s disease, which explained the jaundice. The doctors told me that, in fact, I wasn’t crazy, and that it wasn’t all “in my head.”  I can’t explain how relieved I was. It was hard realizing that they couldn’t cure me, but just knowing that I did have a known medical condition and that it was treatable was a huge weight lifted off my shoulders.            
One huge blessing for me was that during the summer, when I was hospitalized, I had been planning to go on a mission trip to El Salvador with a group of staff members from the camp. Once I found out that I was going to Mayo, I was concerned that my appointments might be scheduled during or close to the time that I was planning on being in El Salvador.  (Once you are referred to a doctor at the Mayo Clinic, it usually takes a while to get appointments scheduled.) But God had big plans for me. Once I found out that I was going to the Mayo Clinic, it only took a week for them to fit me in for appointments.  After I got back from Mayo, I had about three weeks until I was planning on flying to El Salvador. During these three weeks, I worked on my treatment plan and ended up being well enough to fly to El Salvador for 11 days.

When I was in El Salvador, I did get pretty sick due to dehydration (which for people with autonomic dysfunction and POTS is about the worse state you can be in), but God was still taking care of me. One of the staff members that went on the trip was the camp medical officer, and he was able to give me some IV fluid. Overall, the trip was amazing, and I will never forget it.
          
At this point, I am a high school graduate and working again at the same Bible camp. I am still pretty sick, but I know God will give me the strength to get better through my treatment plan. I believe that God uses trials in our lives to help us grow in our faith and to make us stronger people. I also believe that God allowed me to go through everything that I went through so that I can use my experience to help other people. In a couple months, I will be starting my paramedic training. I now will have a better understanding of my future patients.

I want to encourage everyone to never give up hope and to always trust God, no matter how dark the future may seem.

*“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:11* 

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One Day at a Time

by Sue
November 2007

Hi--my name is Sue; I'm 45 years old and live in Rochester, NY.  I guess I'll start at the beginning.

I was adopted at birth and was raised with a brother and sister (also adopted but not related).  We were an average family; my parents were very Catholic and loving.  At about age 4 or 5, I wasn’t able to stand or kneel at church without feeling like I was going to faint.  I knew when I needed to sit and just dealt with it that way.  When I was 6, my mother became ill.  After years of wrong diagnoses and a stay in the psychiatric ward, she was diagnosed with multiple sclerosis.  It must have been so hard for her, but I don't remember.  She passed away when I was 10.

My father remarried the next year.  Boy, did I give my step-mother a hard time.  Now, as an adult, I thank God for her every day.  My near fainting continued, and I just dealt with it.  I was very much a tomboy and was very active in sports until 9th grade.  Then as time went on, I realized that my energy level was decreasing. I didn't want to do much of anything.  I couldn't stand for periods of time.  I felt lazy and different.  I thought it was due to starting menstruation and painful periods.  So, I just learned to cope.

When I was 17, my father passed away from a heart attack.  It was so strange-- I kept thinking that if my father hadn't remarried, we would be orphans. I seriously don't know what we would have done without my mom.   I kept worrying about the funeral.  Everybody stands and talks, but I knew that I couldn't do that.  I kept thinking that everyone would think that I was rude and didn't care because I was sitting and not making an effort to greet people. That still kind of bothers me.  Well, life goes on. 

When I was 19, I met my future husband.  We were together for 4 years before we got married.  I always felt like I was lazy.  I never liked to cook because it took too much energy.  I would clean, but I became exhausted easily.  I was getting one bladder infection after another.  The doctors just kept prescribing medicine.  They did send me to a urologist to dilate the urethra; that didn't last too long.  So life went on.  We got married in 1985 and soon after, we had our first daughter.  My husband was finishing up graduate school, and I was working in accounting at a mortgage bank.  There were no problems with the pregnancy, and Stacey was perfect. 

My husband graduated in 1986, and we moved to San Antonio.  Our second daughter was born there.  Again, the pregnancy went well.  After Shannon was born, I began having major problems with diarrhea.  That only lasted for a few months, but minor symptoms have been present since.  We noticed that Shannon didn't seem to progress as well as Stacey.  Because of “mother's intuition,” I never gave up with the doctors.  When she was in 5^th grade, she was formally diagnosed with a non-verbal learning disorder with neurological and cognitive deficits.  Thank God that she had been in special education since age 3.  Anyhow, in 1988 we moved to Vermont since my husband had gotten a job with IBM.  I was a stay at home mom and advocate for Shannon. 

In 1990, our son was born.  My husband cried.  He was a great dad.  When not at work, he was always with the kids-- a big kid himself.  A lot of times, he would come home from work and take the kids out to do random things.  I would stay home on the couch, too exhausted to move.  That still bothers me to this day.  I (we) missed out on so much because of me.

Our son Tim also had special needs but not as much as Shannon.  I still, to this day, advocate for him.  We, my husband and I, could deal with anything that life threw at us.  We were a great team.  In March of 2000, out of the blue, my husband had a seizure.  That night, he was diagnosed with a brain tumor.  Boy, talk about life changing.  We went to Boston for surgery.  They removed 98% of the tumor.  It left him temporarily paralyzed on his right side.  We brought him back to Burlington for a month in rehab.  During this time, I was diagnosed with hypothyroidism.   My husband passed away in July of 2000. 

In October of 2000, I moved the family back to Rochester to be near family, friends, and my husband, whom I had buried there.  My health was the same; I had near fainting, constipation, bladder infections, exhaustion, but life goes on.  I met Andy in late 2001.  Our relationship grew, and he moved in with the kids and me.  In February of 2005, I had the worst headache of my life.  I went to the emergency room and had a CT scan and spinal tap.  Both tests were normal.  Thank God I had no tumor; that's all I could think.  Well, the headache still hasn't gone away.  For the past 2 1/2 years, I've been to all types of doctors.  First, they told me it was stress, then a possible spinal fluid leak.  I was sent to a neuro-ophthalmologist at the University of Rochester.  She put me in the hospital to try to break the cycle of headaches.  It didn't work.  But, they did notice that I was having problems with my blood pressure.  It was very low, especially in the am.  I was referred to a cardiologist for further testing.  They did testing in the office which showed that I had orthostatic hypotension.  After that, I had a tilt table test.  Well, I failed that big time. As I did research online, I started to get the idea that all of the health problems I'd been dealing with might have a collective name. 

I continued to tell the doctors that I had trouble standing for any period of time, numbness and tingling in my head, along with the pain.  When I walked to the fridge, I’d be out of breath and sweating like a pig.  I also had many other symptoms.  This headache was ruining my life.  My husband was doing research for me and found POTS.  I laughed at him, but as time went on and I did more research, WOW, it answered so many questions.  It helped me see why I always felt like I was lazy and why some days I couldn’t even get out of my chair.  I'm not insane.

We talked to my doctor who agreed that it was POTS and referred me to an autonomic specialist.  Now the problem is that this specialist has old, broken equipment and is waiting for parts.  Figures, huh?  So for now, I am taking Celexa, Synthroid, Dexedrine, Vicodin, Compazine, Dilaudid and Restoril. I still have my daily headaches, some much worse than others.  Some days are good, but I have continual nausea, numbness and tingling in the head, definite brain fog, problems with coordination, and constipation.  I guess I just need to wait for the specialist to fix his equipment.  At least there is a name for this condition.  At least I'm not insane.  At least I have a loving and caring husband and kids to help me.  And life goes on.

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