The Patient's Voice

Views expressed in The Patient's Voice are not necessarily those of the Dysautonomia Information Network or its members.

Share your experiences in The Patient's Voice!

The Patient's Voice is a newsletter column where patients can express themselves and write about experiences relating to dysautonomia - both positive and negative. It is a place to share medical experiences, suggestions, short stories and poetry, etc. Send contributions to: staff@dinet.org

The top 10 reasons POTS sufferers don't date:
By Dan Jacoby

#10. Your date might think they're too good looking if he or she shows up and you faint after answering the door.
# 9. It's no fun having your blood pressure go down during your first goodnight kiss.
# 8. Your date thinks you always need to use the bathroom because you can't stop crossing your legs.
# 7. When you finally get the nerve to tell them you have POTS, your date says, "Let's light one up and party!"
# 6. You’re tired of having one of your dates cry because when you say, "I need to sit down" he or she thinks you're going to dump 'em.
# 5. Florinef is not Viagra.
# 4. You’re tired of telling them you have autonomic failure and they recommend a good transmission repairman.
# 3. You’re afraid there will be one too many "standing ovations" at the show you're supposed to go to.
# 2. Your heart races even if they're ugly.
# 1. You can't take being stood up.

With Sincere Gratitude to Professor M. Esler
By Tracey

I have been diagnosed with autonomic dysfunction of the sympathetic nervous system. I have numerous symptoms which include very low blood pressure, severe tachycardia, tiredness, weakness, severe headaches, very high blood pressure at times and shakes. I also have lipomas all over my body and a series of other very annoying and painful symptoms, as well as a small pituitary adenoma.

I feel the worst when my blood pressure falls too low and the adrenaline kicks in. It’s a terrible feeling which gives me the sensation of severe anxiety. I have many other health problems, too many to list. However, there is hope and for anyone who reads this, after years of suffering and being treated like a neurotic, I was finally sent to see heart specialist Professor Murray Esler at the Heart Centre, in the Alfred Hospital in Melbourne.

I would recommend Professor Esler to everyone. He is one of the most caring, dedicated doctors I have ever had the pleasure of meeting. He believed in me. My case has been very difficult. I not only have numerous medical problems, but I am overly sensitive to medications. Despite the challenges, he has never failed me. He has looked at the bigger picture, referring me on to dermatologists and neurologists, as they all try to put the puzzle pieces together.

At the moment I am waiting to see if I have an extremely rare disease. Time will tell. I’m only 37 but this has gone on for years. I thank god for Professor Esler doing the tilt table test and finding dysfunction of the sympathetic nervous system.

Without Professor Esler and his ongoing help, I’d probably be in a nut house by now. He never gives up on you, even though he is an incredibly busy man. He has a very rare quality, which is compassion, and I can never thank him enough for his help, time and patience. I hope this helps people believe that there is hope when you think all hope is gone. There are incredible doctors, you just have to keep believing in yourself, listen to your body and never quit searching until you find some one like Professor M. Esler. Just look him up on the Internet and you will see what I mean.

This is with sincere gratitude to Professor M. Esler.
Good luck everyone,

Tracey

Dysautonomia News is a quarterly publication of the Dysautonomia Information Network.
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