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janiedelite

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About janiedelite

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About Me

I've had headaches and GERD off and on since my early twenties, but I noticed increasing fatigue, brain fog and tachycardia in the fall of 2006 (just after I had mono and a bad car accident that led to 2 hip surgeries). Since June 2008, I've had burning skin, chest pain, pooling everywhere, metallic taste in my mouth, sore throat, constant nausea, flushing, fatigue, tachycardia, brain fog, orthostatic hypertension, sleep disturbances, occasional sleep apnea, headaches/coathanger pain, etc. All of this is caused by carcinoid syndrome.

Diagnoses: Carcinoid Syndrome which is responsible for: POTS, small fiber neuropathy, pernio/chilblains, small bowel dysmotility, elevated norepinephrine on standing, migraines

MEDS: carvedilol, octreotide, milk of magnesia, zyrtec, compression hose, salt, vitamins, etc

My mom also has had carcinoid syndrome since she was in her 30's. She is the bravest and most gracious person I know. She went for over 8 years to the doctor with her symptoms before being properly diagnosed and treated. Even though she doesn't have much energy, she always has a smile and a listening ear. My husband married me just before I had my first hip surgery and before the POTS became disabling. Since then, he has fought with me for answers and treatment. He's my best friend and he makes me a better person.

"For I am convinced that [nothing] can separate us from the love of God which is in Christ Jesus our Lord." Romans 8:39

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