The Patient's Voice

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

No More
by Stacey Yount

No More
I don't want this anymore
I want it gone
Poof
No more hurting
No more pain
No more endless tired days
I want something good to happen
To me
To Jim
To my life
So full of pain,
Tiredness, sadness
Frustration
Some hope
Want a child
Want to be free
To do anything, be anything
No more
I don't want this anymore
There is hope in that
Fullness
But today full
Of the cry
No more
I cry to no one
I cry to everyone
NO MORE

Oh to Dance Again
by Stacey Yount

Oh to Dance Again
To feel my wings and fly
To feel the love, the passion,
the joy
Every fiber of my body used
Every part both soft and strong
Every fiber filled with joy
Oh to Dance Again
To teach
To share the knowledge, the steps,
the love
Every fiber of their bodies used
Every part learning to be both soft and strong
Every fiber filled with joy
Oh to Dance Again
I will dance and I will teach
Passing on the contentment,
the joy, the love

Oh to Dance Again

Seeking Others
by S. Churchill, PhD
flatwater_elf@yahoo.com

I have a younger sister who has been diagnosed with POTS within the last few years. I have symptoms consistent with this syndrome. My mother has also reported many of the same symptoms.

I have a history of periodic high stress events, with an underlying, nearly chronic stress load over much of my life. Before hearing of POTS, I presumed that my condition (syncope, fluid pooling in extremities, ion and water balance issues, reactive hypoglycemia, episodic tachycardia, sleep disorders) was a manifestation of concomitant cortisol and insulin insensitivity. Most of these symptoms did not become fully expressed until my mid-30s.

Recently, I have experienced super sensitivity to triggers of glutamine/arginine signaling pathway (including glutamine, arginine, citrulline, and creatine). The most overt symptom on dosing with these compounds (>2 grams/day - these are typical performance supplements used by athletes) is lethargy, provoked and prolonged insulin release indicated by daily hypoglycemic periods not induced by diet, water balance upset and associated core muscle control of balance with severe tinnitis, immunoregulatory issues (provoked release of inflammatory compounds indicated by GI disturbance, intense muscle soreness, and headache).

In other words, these supplements appear to intensify many standard POTS symptoms, all of which had subsided or were controlled by careful use of supplements, stress reduction, exercise, and diet.

I am seeking others who may have similar experience with sensitivity and reaction to arginine pathway supplements, as they may indicate a potential role of arginine/glutamine signaling HPA activation in at least one subtype of POTS.

This Helps Me
by Marsha

I have Neurocardiogenic syncope. I've found that when I am about to collapse standing in line or at a grocery store I can sometimes ward off the event. I step in place, bringing my knees a little upward and puffing out the exhale with each rep. I do this for only a short time so I don't hyperventilate. When done correctly it feels gently brisk, but not explosive or striving for either speed or vigor.

Sometimes I pump my bent arms and fists. Breaths are quick, inhaling on one foot and puffing out on the other, like blowing out candles. So far it has worked to prevent blackouts.

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