dysautonomia questions

[[ge...]]

13 months off and it's the same hell everyday, no windows, no easing, nothing to point to that its going to go away.

Can dysautonomia cause these symptoms?

  - heart feels like it's being crushed and struggling to pump correctly, if I do anything it's worse and beats out of my chest and vibrates throughout body. Almost always a higher heart rate than normal and goes very high with minimal effort, like walking a brisk pace will send it to 180 , that's not normal

  - it feels like from my hips to my heart and lungs it's full of pressure and it's very hard to breathe and very uncomfortable 24/7. I've thought countless hours on what it could be and I'm thinking it's blood pooling? Could blood pool there even when sitting or laying down and cause extreme discomfort?

  - My muscles/ joints are extremely rigid/ stiff and in so much pain especially my lower back feels like it will give out.

  - extremely weak muscles , especially legs get fatigued from just walking, like I just hit failure from a Max weight lifting rep.

  - brain fog, unable to think clearly, anhedonia, dp/Dr, imsomnia

 

  My blood pressure is pretty normal now and doesn't drop while standing, normal variation while pedaling a bike during stress echo. It's normal and it's still POTS? How?

  Doctors don't give a shit anymore and are useless so I'm on my own. They don't have the time to explain anymore to me.

  Can anyone relate to this and have any input if some of this is dysautonomia?

 

[[ss...]]

Yes it’s still bad 28 months now.  The more I read I don’t think we heal ever. A lot of boards of people 4 and 5 years off still bad. Dysautnomia tends to be underlining autoimmune.

[[Le...]]

What you describe was my phase of Acute that lasted 6 weeks to the point of being bed-ridden and then another 6 weeks until I had the strength to do more than 10 minutes of anything. I was here asking for the same help.  Since you are 13 months out and have some significant kindling, I would hope that healing is just around the corner for you.  However; I need to ask if you are following the protocol of cleaning eating, no alcohol or caffeine, making sure your CNS is protected from overstimulation, drinking water with lemon for toxin release, being careful around ANY chemicals like cleaning solutions, NOT being on a computer or having screen time for long intervals, finding ways to relax and get into the state of "flow" where for just seconds or minutes are spent doing something without fixating on symptoms, getting some fresh air for purification of thoughts and blood, and taking care of yourself in a loving, gentle way.  I am just as pissed as you are that we have to go through this but with time and making sure you are following this protocol; I am proof that there is a way THROUGH it.  My phase of Acute also including uncontrollable trembling, muscle spasms to the point of seeing the them ripple through my skin, lack of visual perceptions, major anxiety attack, night sweating, feeling emotionally numb and unable to do simple tasks for lack of concentration.  If you have healed from a worst stage than you are at right now then you know that recovery is coming even though it is taking so long.  Accept that this is temporary and know that you are healing.

[[Bl...]]

I have been like this for 7 months . The only time it is not present is when I am reclining at 45deg or lower to laying down . Then I'm normal.

I am pretty aware of staying on top of my health, I was in a serious car wreck , had six kids , hep from a burger king and a lifelong inflammatory gut condition  and still, I didn't even know the human body could do such a thing . I can still hear the Dr. telling me how safe klonopin was as my HR stays at 80 sitting still ( over 100 if I move , talk or eat ) and up to 168 standing .

  My normal was 65-67

  Its been staying in the 120's to upper 80's standing but that is when still and quiet . 

I have the bladder/intestinal/BP issues that go with it also .

 

It is distressing over on the disautonomia boards the people treating  their pots with benzos . Mine is bad enough that my gp actually suggested I might not see any relief unless I reinstate on valium . That statement sent me in to shock . I do walk slowly 1-2 miles a day but again , super slow . I drink the liquids and my diet is pretty salty but really that does not help at all and I have been at it since Feb .

I agree this is a nitemare . I have no idea when this could've started or why .

I have noticed that alot of us with this have taken Klonopin or Ativan .

[[ge...]]

Basically it feels like a bit lower level of acute and it's staying put without actually getting out of acute. There's no reason for it, I basically only drink water and sometimes a Gatorade bc they said I need fluids and electrolytes, and don't eat terrible, I do try to keep salt up some days because it helps blood volume but my blood pressure is already normal 125/80 so I never know what to believe

[[bm...]]

Hey! Try propranlol! It has been amazing at helping the crushing chest pain. I also take Real Scientific CBD Hemp oil and you can get it online (I buy the gold bottle 500 mg and the 1000 mg isolate powder to add) I use .30 ml with the dropper and it will calm you down SO MUCH and help anxiety! If you have sleep problems this will knock you out so use it in the evening. Please research the pros of cbd oil and try that one out if you decide to use it.. the combo of those two are a godsent. Also, try taking half a benidryl when feeling the chest pain. Hope this works!

[[...]]

I have intense dysautonomia as well.

 

You've probably already read about this, or maybe even tried it yourself, but I have truly found compression socks to be extremely helpful. I will not leave the house without them. I was fainting at work, couldn't sit or stand without pre-syncope, etc... Now, with the socks and with constantly drinking water, I've finally gotten some control over the symptoms.