Pressure Pulse Temperature

[Ian T]

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 dysautonomia experience or training.

[Pistol]

1 hour ago, Ian T said:

 BP usually hangs around 300 and crashes inexplicably to below 50 making me completely unresponsive. Cannot tolerate any cardiac or BP meds;

I am not sure what you mean by "BP around 300". Could you clarify? A BP of 300 ( whether systolic or diastolic ) is not sustainable. 

 

1 hour ago, Ian T said:

Anyone else experience lack of ability to control blood pressure, pulse and body temperature?

Unfortunately this IS dysautonomia and I guess most of the people here have one or all of the above. I also have both hyper- and hypotension and have both syncope as well as seizures caused by extreme fluctuations. And I also know about uninformed ( or plainly rude ) ER docs. Sorry you have to endure them  as well. 

[dancer65]

Yes as Pistol said it’s one extreme to the other . What has helped me was learning not to get annoyed and stressed about it , I use to get so angry at my body for misbehaving but it just exasperated my symptoms . During episodes I lie down and practise deep breathing relaxation exercises , this has taken a bit of practise to relax and not get distracted. My body temp often is low so I use a hot water bottle and tuck up in bed whilst I practise the above ! 
Hope you feel better ! 

[Ian T]

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.

[Ian T]

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. I have DNR and have reconciled with doctor counseling that In my case I may die at any time. Best wishes to you.

[Ian T]

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.

[Ian T]

One additional note... Yes the DNR and palliative care decisions have been tremendously difficult. I have two adult children and three grandchildren.