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  • The Member Stories section of our site is a place where members can submit the stories of their experiences as a person living with dysautonomia.  We also link to member stories that have appeared in our newsletter.  Please note that Member Stories are not edited by DINET and the views and beliefs expressed in the articles are strictly the views of the member.   Please note that the stories submitted are reviewed for content and should follow the guidelines of the site.  We do our best to publish each story submitted,  but publication is at DINET's discretion. If you would like to submit your story, please write to webmaster@dinet.org - include "member story" in the subject line. 

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 I 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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