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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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POTS - huge pulse increase from very smal movements

sunshine44

Que sera sera
Messages
1,122
yep! same here! all year long now.....and meds and supplements that were helping now aren't so much after my crash...it is sooooooooooooooooooo frustrating. I also feel like my brain is broken after 4 straight months of this day and night.

Do you wake in middle of night Betty with heart pounding? confusion? blurry eyes? and can hardly get up to go to bathroom?

this is just cruel. I am so over this. No one should ever have to continuously go through this
 

sunshine44

Que sera sera
Messages
1,122
The only thing I find that semi works is TRYING to calm myself (ptsd kinda kicks in when you have soooo many of these episodes on a biological level and you need to move...yet can hardly for months) and just time but I have yet to fully eradicate it.
 

sunshine44

Que sera sera
Messages
1,122
My practioner said its the vagus nerve and enteric nervous system in me that has been in dysfunction causing these extreme POTS symptoms. It seems as if it was attacked by a virus and hasn't found equilibrium again yet. I am workig on neural retraining which is beneficial but difficult when some old supplements I have introduced have caused immense agitation for awhile now, very hard to focus.
 
Messages
35
yep! same here! all year long now.....and meds and supplements that were helping now aren't so much after my crash...it is sooooooooooooooooooo frustrating. I also feel like my brain is broken after 4 straight months of this day and night.

Do you wake in middle of night Betty with heart pounding? confusion? blurry eyes? and can hardly get up to go to bathroom?

this is just cruel. I am so over this. No one should ever have to continuously go through this

It seem like we have exactely the same. I think our symptoms are caused by an unbalance between sympatic and parasympatic nervous system. The parasympatic nervous system are not able to slow down / create balanse in the heart (and the whole system).
 

sunshine44

Que sera sera
Messages
1,122
yes, please reach out anytime....this is so very difficult to go through and I haven't met many with as severe of symptoms as me.....do you get weird night time stuff too and have to eat through night? like nuts etc?
 

sunshine44

Que sera sera
Messages
1,122
When I was hospitalized in August, they didn't know what to do and it really took more of a number on my nervous system but IV fluids and potassium and magnesium ivs did help temporarily.....but I have mainly been on my own since. My LLMD doesn't know what to do, etc.
 

sunshine44

Que sera sera
Messages
1,122
@sunshine44

Have you seen this interview with dr. Systrom?



no will watch today.

Can you get up at all in wheelchair to go bathroom? It has been so difficult for me because of no stop dizziness/vertigo, tachy, blurry eyes but I do my best hoping and praying this settles more.

I BARELY upped my supplements in August and had this epic of a crash....unreal.
 
Messages
35
yes, please reach out anytime....this is so very difficult to go through and I haven't met many with as severe of symptoms as me.....do you get weird night time stuff too and have to eat through night? like nuts etc?
Yes, occasionally I have to eat at nights.

Al the doctors I have meet say that I'm the most spesial patient they have ever met o_O
 

sunshine44

Que sera sera
Messages
1,122
I have not read this book but have spoken to some of these recovered people on phone and IM....have you ever watched any of these stories?

I truly think there is something to this as meds and supplements are only makig me MUCH worse at this point.

Britneys story really hits me hard.

http://www.whatpotsreallyis.net/
 

sunshine44

Que sera sera
Messages
1,122
Yes, occasionally I have to eat at nights.

Al the doctors I have meet say that I'm the most spesial patient they have ever met o_O
saaaame!!!!! no one knows what it is, not diabetes, not this, not that yet I am completely disabled by it at this poit with two small children to take care of too.

It is surreal.
 
Messages
35
no will watch today.

Can you get up at all in wheelchair to go bathroom? It has been so difficult for me because of no stop dizziness/vertigo, tachy, blurry eyes but I do my best hoping and praying this settles more.

I BARELY upped my supplements in August and had this epic of a crash....unreal.

I use a pulse watch and goes to the toilet when my heart is at it's best (60-70 minuites after taking propranolol). Try this It helps!
 

sunshine44

Que sera sera
Messages
1,122
I use a pulse watch and goes to the toilet when my heart is at it's best (60-70 minuites after taking propranolol). Try this It helps!
I do the same ;)

still really difficult in morning to go number 2 when I am swaying so much and heart is all over the place clammy, dizzy, etc.
 

Belbyr

Senior Member
Messages
602
Location
Memphis
When I get hospitalized. My pulse can increase high and has some good dwell time as well, when doing small movements in the bed.
 

Sushi

Moderation Resource Albuquerque
Messages
19,934
Location
Albuquerque
Have you seen this interview with dr. Systrom?
I just watched it--extremely interesting! Dr. Systrom reports a lot of success using mestinon but also indicates that it enhances vagal tone and parasympathetic function (among other things). I test as parasympathetic dominant (I have neurally mediated hypotension) so I have never thought of trying it. Has anyone else had success with it who is parasympathetic dominant?
 

Belbyr

Senior Member
Messages
602
Location
Memphis
Playing with sympathetic and parasympathetic can be hard. Many times people are making autoantibodies to both sides. There is some science that those antibodies are blocking the chemicals from getting to the receptor like they need to be.

Ansar testing (Ansar is controversial) tells me I am parasympathetic dominant. Digestively I agree, I have rapid gastric emptying and fast total transit time. But, on the flip side I get heart rate increase upon standing and some slight blood pooling if I stand in one spot for too long. I really want to do the cell trend test.