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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.

Pure Autonomic Failure: My Story so Far

by K. Webster
June 2008

I have been very interested to read the personal stories on the website, particularly as I do not know of anyone else who has my complaint, which can be a bit isolating, so thought I'd add my own story to your site. Like many contributors, the early stages of my autonomic failure proved to be a frustrating time for me. My symptoms were: dizzy spells, breathlessness and visual disturbances, especially when walking. All pretty vague things, really.

The first dizziness incident occurred on holiday in France with my husband. I was 5 months pregnant at the time, and my husband had splashed out on a lovely dinner at an auberge in the countryside. The food was delicious, and I'd had quite a bit to eat and drink when I felt really dreadful and very light headed (not drunk, I promise!). I felt so bad that we had to abandon the meal, much to my husband's disappointment! I thought no more of it and continued with life, putting any tiredness or feelings of fainting down to the pregnancy. After giving birth to my daughter, I noticed feeling very unwell and dizzy after meals. At the time, I thought it was because I had resumed drinking caffeinated coffee, and it was having an adverse effect on me. Two years later, I gave birth to my son by caesarean section, which was very traumatic, and I had to go back into hospital after giving birth as I had contracted an infection of the womb and was pretty ill.

After this time, things went gradually downhill. I was having lots of visual disturbances and breathlessness, and it got to the stage that I had to stop several times when walking my children the short, flat journey of about half a mile to school each day. I was also suffering 'coat hanger' pain across my neck and shoulders.  I went to see my GP who was very sympathetic but didn't really know what was wrong with me. He referred me to a local neurologist, who in turn referred me to Professor Mathias at St. Mary's Hospital in London. I went into the neurological hospital in London's Queens Square as an inpatient and was subjected to a wide variety of tests including tilt table, 24 hour blood pressure monitor, etc. It was here that I got the diagnosis of orthostatic hypotension. This drop in blood pressure meant my brain and heart were not getting a constant supply of blood when needed for everyday activities such as eating or walking. This explained my earlier 'caffeine intolerance' after eating and my difficulties in walking the children to school.

Initially, I explored non-pharmacological measures such as special stockings, drinking lots of water, etc., but they didn't make much difference, so I was put on fludrocortisone. Unfortunately, my symptoms continued to progress, and I was put on ephedrine in addition to the fludrocortisone. After a few years, I was prescribed midodrine in addition to the other medications. Recently, I have been struggling to pursue a 'normal' life as my symptoms just seem to be getting more severe. I have had a few isolated fainting episodes after eating.  My blood pressure really sinks after meals and alcohol.  It is also very low in the mornings, and I don't even bother with breakfast, as I'd feel so lousy that this would effectively stop me from getting anything done.  I try to eat a little and often, but it is not easy to do that and care for my family.  I have also noticed that heat is really beginning to bother me, and I spend holidays either in the shade or submerged to keep cool!  Exercise is also particularly difficult.  I just about manage to swim 20 lengths, but any other form of exercise is really tricky as I have to stop for a breather or to put my head between my legs every few minutes!  At least with swimming, I am horizontal, so the blood doesn't pool in my ankles.

Last week, I was sent back to London for more tests with Prof. Mathias, who is now suggesting I try taking a drug called octreotide before meals. He feels this could greatly enhance my quality of life as it reduces the effects of eating on my blood pressure. The downside is, it has to be injected subcutaneously 3 times a day.  I haven't gone on it yet, and to be honest, I am very nervous about the self-injections.  I can see that I will have to get over these fears, especially if it means my life could be less restricted.  I wondered if anyone reading this has any experience with this particular drug.  I would be most interested to hear how you got on with it.

I also wondered if anyone who has similar symptoms to mine has any self-help tips.  Personally, I have noticed that if I steer clear of carbohydrates, my symptoms are slightly lessened. I also try to drink lots of water, tea, coffee, etc. to try to keep my blood pressure up.

Another point I thought I'd bring up is about pregnancy. I definitely noticed this coincided with the onset of my symptoms.  I noticed that another contributor had also mentioned this. When I mentioned it to the scientists conducting the tests for the Prof. at St Mary's, they were interested in this. Has anyone else associated the two things?  I wondered if my worsening symptoms might in some way be tied in with the menopause.  Mind you, this association would not work for male sufferers!

This is a much longer letter than I originally intended to write, and I hope I haven't bored you all too much. It is comforting to know that there are others like me out there, and maybe we can help each other by sharing tips.

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Gail’s Journey

by Gail
June 2008

In December 2003, I got a new job at the Medical College of Wisconsin, my first full-time job in years.  I’d been lucky to work a minor part time job (mostly on Saturday mornings) for a friend, and stay home with my kids the rest of the time.  Then in the fall of 2003, my husband left his profession to start a new phase of life working for himself, making it necessary for me to pick up the responsibility for benefits and regular income.  My youngest child of three started school that year, and having Dad at home to drop off and pick up from school made it much easier for me to leave that stay-at-home life behind. 

That December also brought the horrible news that one of my nephews, then age 18, was diagnosed with leukemia, and not just any leukemia.  He had a juvenile form that is dreadfully difficult for anyone over age 12 to overcome, and it was a “special,” mutated form that was resistant to many treatments.  My life was rocked by this news, and I found myself emotionally and physically taxed by all the stressful events happening in my life.  My GI function was all over the board.  I was getting weaker by the day.  I had a difficult time swallowing without choking (and as a singer, the vocal weakness became a source of constant irritation and frustration), and I had abdominal pain and nausea constantly. 

The surgeon I worked for made a phone call for me and got me into the GI clinic with his choice of physician.  They tested me for GERD and found nothing.  But my GI doctor is a brilliant man who had once treated a patient with problems similar to mine, related to damage to his C6 nerve.  This doctor saw my history, including the 2 bad car accidents I’d been in that had caused whiplash in the same place on my neck.  He ordered an MRI of my cervical spine and, yep, you guessed it—they found C6 nerve damage.  He immediately referred me to Dr. Safwan Jaradeh, who did an EMG, then a small-fiber EMG, and diagnosed me with myasthenia gravis in the fall of 2004.  Blood work also showed very low B-12 levels, so I started on oral (sublingual) B-12 and Mestinon (pyridostigmine).

While both of these helped me, I still had periods of severe dizziness, and the abdominal pain and nausea came and went.  I had a tilt table test done, which showed nothing—no POTS.  I also started going to our SpineCare clinic for back and neck pain, mostly related to sitting in a horrible office chair all day long.  While the PT and chiropractic care helped, the pain never completely went away, and my boss finally ordered a good chair for me.  I still had pain but not nearly as much.  I got on with my life.  The muscle twitching and excessive foot, leg, hand, and facial muscle cramps started to ramp up, but were mostly bearable.

Dr. Jaradeh referred me to Dr. Alexandru Barboi, who was starting up a new specialty clinic for people “like me” with myasthenia.  We had a wonderful first visit where we went over, in detail, the past few years of my life and what had led to my diagnosis.  Then he asked questions about my childhood and adolescence, ordered a “re-do” of my tilt test, and then had a discussion with me about dysautonomia vs. myasthenia.  The light went on!  All those symptoms that seemed so completely unrelated suddenly coalesced into a “real” diagnosis—sort of.  I know you all understand what I’m saying.

Soon after this, I got a new position in a different department, and it was a job I was very excited about.  The job was wonderful, but the physician I worked for was a nightmare.  I was sick daily—nausea, diarrhea, abdominal pain.  I started losing weight (not entirely a bad thing, just the wrong way to do it).  The stress was really getting to me.  The fatigue became overwhelming, and Dr. Barboi prescribed Provigil, which is usually prescribed for people with narcolepsy.  It’s helpful, and I can’t function if I miss a day of it.  The weakness, lightheadedness, and abdominal pain continued, and I changed departments again, this time to a great situation.  With the constant fear and stress engendered by the previous position gone, I expected to feel better.  Not so.  Despite the release from the worst of the stress, I still had abdominal pain, nausea, dizziness, and exhaustion.

However, I’ve learned a few things over the last year, in particular, that have sustained my good attitude about life in general.  I’ve discovered that I’m one of the luckiest people with dysautonomia in the world because I have Dr. Barboi in my corner.  I’m an employee where he is employed, so I have the distinct advantage of direct communication and easier access to my physician than most people.  I have a husband who is patient with my roller coaster life, even though it often frustrates him, and he can’t really empathize.  I have a manager who is kind and understanding when I have a bad day, and I work for a physician and a nurse practitioner who are trying to learn more about dysautonomia just so they better understand what I’m going through.  I am able to work, play, and do yard work like most people (with more physical repercussions, but I can at least DO the things that are difficult for many with this condition).  My kids see a mom who cooks and cleans, who takes them to the beach and out for frozen custard afterward, who throws the baseball around at the park, and who rides bikes with them sometimes.

There are days when it’s so hard to roll out of bed, get ready for work, make it through the day without making a major error that could affect a patient’s health, and go home to face making dinner, helping with homework, walking the dog, etc.  But I can do those things, so I make myself do them because I’m afraid that if don’t, I would be doing less than I should be.  I sometimes push myself too hard to be too perfect and to be too healthy.  Sometimes it’s okay to just sit down and be sick, to huddle under a pile of blankets because I can’t get warm, or to cry or lash out at the limitations my body dishes out on a seemingly random basis. 

Dysautonomia is different for everyone.  I feel so bad for the people who can barely get out of bed or the recliner most days.  I don’t have that limitation often.  But I still understand the pain, the frustration, the weakness and the fog that envelopes us all on different levels at different times.  My message to all of you is this: take it one day, one hour, at a time.  Live in the moment now rather than waiting for a better one.  Don’t waste time fighting this because you’re just fighting yourself.  It is who you are, so embrace it, get past it, and get the better of it.  Live for today, and live well.

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