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Relief from Radiation Fibrosis Syndrome

Head & Neck Cancer | Last Active: 10 hours ago | Replies (62)

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@56tburd I tried to get him into Vanderbilt Autonomic Dysfunction Center because they list Baroreflex Failure as one of the disorders they see people for, but after almost a year of being unable to get him in, we moved on to seeking other treatment.
Besides wild blood pressure fluctuations, he began having overreacting fight/ flight symptoms. Sometimes just a minor startle reaction caused so much cortisol and adrenalin release that his BP would shoot up, face turn really red and sometimes not able to form words correctly. The first time I saw that, I was really afraid he was having a stroke because he didn't realize his words weren't correct. I understand what that was now and we try to avoid anything that could cause a reaction like that again.
I'm not a doctor but I'm POSITIVE the constant strain on his heart of the fluctuating BP and stress reactions is what caused the heart failure of unknown origin that his doctors called it.
It seems like it's always something new to add to the list. I'm sure it seems that way to you also...

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Replies to "@56tburd I tried to get him into Vanderbilt Autonomic Dysfunction Center because they list Baroreflex Failure..."

@mwpcaretaker I'm currently taking 100mg Labetalol first thing in the morning and 400mg at night. I have on hand .1mg Clonidine to offset hypertension spikes and 5mg Midodrine to help with hypotension lows. It took a long time to come up with this combination, but research now supports it. They suggest it can't be controlled, rather to treat the symptoms for quality of life. So far it has helped even though I still experience exaggerated highs and lows. It sounds like your husband's condition is a challenge. I hope he finds what works for him.