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Ian T

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  1. Sharon I am challenged by intermittent tachycardia along with other symptoms of dysautonomia. Unfortunately I have no treatment to suggest. My cardiologist was completely stumped. Awaiting further dysautonomia testing and related specialized neurologist consultation which will take estimated 1-2 years to obtain in my metro area! Best wishes to you.
  2. U.S. healthcare is a mine field of legal risk management and medical protocols that yield more often than not improper care for dysautonomia patients.
  3. One additional note... Yes the DNR and palliative care decisions have been tremendously difficult. I have two adult children and three grandchildren.
  4. I am also doing something some other patients may want to consider. My DNR order and bracelet only prevent CPR or other advanced cardiac life support and intubation. I am working with a palliative care doctor to develop a document that outlines appropriate and inappropriate treatments, tests & protocols for me as a dysautonomia patient. This will also help prevent unnecessary hospitalizations when all I need is stabilization in ER. While no such legal document exists, my palliative care doctor strongly suggests it.
  5. Thx Dancer65. I try all those things too but to no avail for me. Some “episodes” are indeed relieved in 3-4 hours by lying flat. Unfortunately whomever I happen to be with tend to call 911 in fear and desperation at what appears to be happening. I’ve educated my friends and family as well as medical personnel. Never had a stroke just go completely unresponsive with eyes open (type of syncope). Unfortunately I sometimes am in a position that prevents the person from moving me to lying down (e.g., sitting in a dining chair). All I can do is keep trying and maintain as much patience as possible.
  6. Pistol, yes BP Around 300 is not sustainable. Mine hovers there and rarely drops to around 250. In my counseling for do not resuscitate order (DNR) doctors explained that I’m a walking time bomb. No choice left for me. I cannot function at the extreme low end and my body will not allow us to bring it down part way. I only am at extremes. I’ve chosen quality of life for as long as it lasts. Non-specialist ER doctors Andy hospitalists simple do comprehend and respect this medical decision that has been made. I have to argue every time they try to force standard blood pressure meds on me.
  7. Anyone else experience lack of ability to control blood pressure, pulse and body temperature? BP usually hangs around 300 and crashes inexplicably to below 50 making me completely unresponsive. Cannot tolerate any cardiac or BP meds; my body just goes to other extreme almost immediately. My pulse hovers at 40 then spikes to well above 130 with any standing or activity. I spontaneously become so hypothermic that they have to use complicated warming devices to bring body temperature up as if I had fallen into icy waters. It’s getting exhausting. And every ER doc has his own theories with no dysa
  8. Thx Pistol. Working on it. We only have 3 specialists of this type in my metro area. Waiting 2.5 months to get fresh testing. They say they will only then give me a name/referral and that it will likely take 1-2 years to get initial appointment with specialist! Argh! I am regularly being taken by paramedics to ER only to have undereducated hospitalists reinvent the wheel hopelessly. Working with palliative care doctor to develop a document to prevent these ridiculous useless hospitalizations. Have DNR and healthcare power of attorney in place. Can only hope and pray.
  9. I just learned about this site. Have had dysautonomia for years. Main symptoms for me only involved blood pressure, heart rate and temperature regulation. Last period of time have experienced periods of sudden extreme depression and periodic inexplicable fits of rage. I’m 58 and had no idea these additional symptoms might be related to my dysautonomia. Thx and glad to know I’m not alone. Will discuss with doctors.
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