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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.

Emma's Story

By Emma Nicholson -from Ipswich in Suffolk
December 2003

As a teenager at high school I experienced some "dizzy and blackout spells". The doctor said they were due to hormonal changes and left it at that. Overall, I was pretty well and the dizzy spells seemed to settle down. I left high school at 16 years old healthy and happy.

I started training for my job, which was working with drug-addicted children in a crisis unit. Things were going well until I fell ill one day at work with stomach pains. I was rushed into hospital where I underwent an operation to remove a burst appendix. Soon after that I was fighting an infection, which left me in hospital for six weeks.

Once I was discharged from hospital I was feeling pretty well and had settled back at home with my parents. Two weeks later I started experiencing extreme dizzy spells upon standing. I was also passing out. I was then taken back into hospital where the long journey to discover what was wrong with me began!

The blackouts got so bad that I could no longer stand at all, and also transferring became a problem. I was then put on complete bed rest or Hoist transfers only. This lasted for three months. The hospital was stunned with what was happening to me. They sent me for blood tests, scans and other tests to try and find out the root of my problem.

The tests started to come back absolutely fine and tongues started wagging. "Is this girl crazy?" people started asking. This became a very stressful time, as I did not know what was affecting me in such a dramatic way.

I was then referred to Queens Square in London where I was diagnosed with POTS. I had many tilt tests, breathing tests, heart rate tests and heat tests. I stayed in hospital for a year and three months with this condition, where I had physio, medication trails and time to help me adapt to being in a wheelchair.

I have this condition so badly that I use a wheelchair all the time, as I blackout as soon as I go to stand. I take 97 tablets a day to try and maintain a blood pressure, as it drops to as low as 49/60. I take beta-blockers to slow my heart rate and other medications to increase my salt levels, etc.

The dyautonomia has affected my blood pressure, heart rate, stomach-I now have to have a syringe driver set up every night with anti sickness medication as my stomach no longer empties properly. I am waiting for a drainage procedure to be done, but there is a problem with my being put under anesthetic. I have a long-term catheter due to retention problems.

I know the above doesn't sound that hopeful, but I must add that I am now twenty; I have an adapted bungalow and have some really great caregivers. I am back at work now and studying for a degree in alcohol and drug counseling. I am very happy and making the best of the situation.  

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Katherine’s story

By Katherine
January 2004

I have had mild POTS symptoms since the early 1990’s when I was in my early 20’s.  The symptoms started while I was a Peace Corps volunteer in Africa.  They were mild, came and went and I didn’t think anything of them.

In 1999 I had episodes of prolonged tachycardia, chest pain, fatigue, tremor, and anxiety.  My general practitioner diagnosed me with anxiety, and found that I had an under active thyroid due to Hashimoto’s – autoimmune thyroid disease.  I started treatment for Hashimoto’s and my POTS symptoms gradually disappeared.

Then I got pregnant in 2002.  This is when everything changed, and it was clear something else was wrong.  I remember one day at work—I was about 4 1/2 months pregnant -- I was trying to lift a sheet of paper from a printer, and I felt so weak I had to sit down.  The next day I was in a conference phone call, and I suddenly felt so dizzy and weak and my heart was beating so fast I had to hang up.  I laid on the floor at work for an hour, and then my husband came to get me and we went to my ob/gyn. 

She was concerned I had an undetected cardiac problem and sent me straight to a cardiologist.  He ran some tests and concluded that I wasn’t exercising enough and was anxious.  Over the next weeks my condition deteriorated further, until I was nearly constantly dizzy.

I talked to my endocrinologist, who suggested I try to add more salt to my diet.  This did the trick!  Within several days I felt almost normal again.  By the 7th month of my pregnancy, though, I was too exhausted to work anymore and was having dizzy episodes.  I stopped working and was at home, sleeping a lot.  My ob/gyn just said it was normal to be tired in late pregnancy and that I was too demanding of myself.  I didn’t know anyone who had been this tired though.

My daughter was born at term, 10 lbs, 2 oz, 22 inches long, by C-section due to placental abruption that nearly killed both of us.  My blood pressure went sky high during labor.  I lost so much blood I had to have a blood transfusion.  I was sick in bed post-partum for months.  I managed to nurse my baby for four months, but did very little else.  Every doctor I saw told me I had severe post-partum depression and needed treatment.  I finally agreed to see a psychiatrist who determined I had no depression, but an undiagnosed medical condition. 

Eventually, I became so weak I was unable to walk and at times unable to sit up.  My husband carried me to the ER, literally, on three occasions.  On the third occasion, I was admitted to the hospital and finally diagnosed with POTS.  My doctor (a partner of the cardiologist who diagnosed me with lack of exercise and anxiety) started me on 20 mg of Prozac and 10 mg of Pindolol.  By August 2003 I was stronger and back at work part time. 

I have relapses of the symptoms that scare me, and I am not as well as I was prior to pregnancy.  I have limited exercise tolerance and get tired easily.  I do yoga every day and walk several days a week with my daughter in a stroller, but anything more aerobic still seems a strain.  I find that eating too much sugar, not getting adequate sleep, too much stress, a minor medical procedure—any of these things--can set me back.

Overall, I feel optimistic about my long-term recovery, although I have also accepted that I have to make some lifestyle changes.  I have also learned that illness can be a blessing.  I have discovered that it is possible to take one day at a time, sometimes just one breath at a time, although this is not always easy.  I have found how important my family is to me and what special people they are.  The world around me seems more alive and intense than ever, and I take pleasure in the small details of life that I might have otherwise taken for granted.  Life seems so precious, and the ability to enjoy it is a blessing.

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Kathy's Story

By Kathy Howell, Ohio
January 2004

My name is Kathy.  I am approaching my thirtieth birthday this year, and I have been living with POTS since October 2001. 

I went to have what I thought was a simple knee surgery.  It turned out to be anything but simple.  Within days of my surgery I began experiencing rapid heart rate and shortness of breath.  At first the doctors thought that it was caused by blood clots in my leg and my lung, but even after those were dissolved I was still symptomatic.  This lasted for eight months without any doctor being able to tell me what was going on. 

Besides these symptoms, I had no energy or any desire to do anything.  It was completely frustrating and aggravating.  At the insistence of my employer, I was sent to a cardiologist in Columbus, Ohio.  It was then that I was finally diagnosed with POTS.  Unfortunately, although I had a diagnosis, they couldn't help me either.  The regimen of medicines they put me on did not work.  It made me depressed.  I knew that without some kind of improvement in my health I would not be able to return to my job as a corrections officer. 

By July 2003, the cardiologist I was seeing had run out of options and scheduled me to see Dr. Blair Grubb in December.  I had no idea how I was going to survive those five months.  I left it all in God's hands and went on vacation. 

Returning from my vacation, I went to my regular family physician.  I couldn't handle the depression anymore.  He said he had just read a medical journal article by Dr. Grubb that would help me.  It turns out that the same drug my physician wanted to use for my depression would help me with the POTS.  I agreed to try it.  It couldn't be any worse than what I was already experiencing, I thought.  Turns out it was a good decision to try it.  That was in August 2003, and by November 2003 my health had improved so much that I could return to my job.  Two months have gone by, and although I can't perform my job quite 100% effectively, I am doing quite well.

I had absolutely no idea such a syndrome existed.  Until I got sick, I had never heard of it.  It wasn't until this past December that I knew what had caused all the problems in the first place.  I have a subdivision of POTS, known as Joint Hypermobility Syndrome.  It means that there is not enough firm collagen in my joints and blood vessels for them to perform accurately.  The reason that it wasn't discovered earlier is that the muscles in my legs were overcompensating for the lack of firm collagen.  When I became unconditioned due to the blood clots, that's when all the problems began. 

I believe that more needs to be done to get the word out about these syndromes.  Until this all happened to me, no one I knew had ever heard of it.  You see people on talk shows all the time discussing many different diseases and syndromes.  I wish that we could use these avenues to inform the world.  Without the information, there is no hope for better care for us.  Getting the word out may also help someone out there who suffers from these same symptoms but also has no idea this syndrome exists.  Many cardiologists don't even know about it.  Remember, if not for my family physician, I have no idea if I would be back to work right now or not.  If there is anything I can do to help pass along this information, I would be more than happy to do it.  I just don't know where to start.  Any help would be appreciated.

I can be reached at KATHOW23@aol.com if anyone has any ideas on how to spread the word about this syndrome.  For those of you who also suffer with the symptoms of this syndrome, my heart is with you and may the good Lord bless us all.

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