Why is Dysautonomia Symptoms Inconsistent?

[MikeO]

Hi,

I am still struggling with this. Seemingly i can be fine one moment and then turn for the worse. Ranges from sudden bp drops, blurry vision, fainting or passing out hearing changes, sudden GI problems. I have tried to keep my system consistent just does not seem to work at times. 

[MTRJ75]

I'm trying to explain to a friend why I can't do something with them today even though I have nothing to do and haven't seen them in a number of years. It's like....

So I feel like I've had a few beers with a bit of a buzz, but you ever had an old car that kinda shakes in the cold? But also kinda like I'm dropping on a roller coaster. And that feeling you get when you stand up from lying down too quick. Also, you know the way you pick up a cat from the back of their neck, I feel like someone's gripping me like that. And my vision blurs in the sunlight. But I'm just on the edge of exhaustion too. 

It's not that all these things are awful right now and it'll probably be different later, but they all feel like they could tip with the right nudge. 

BUT I'm feeling a lot better now than I was...really. 

When I have my 3 month neuro or cardio checkups and the assistant comes into the room before the doctor to take notes on symptoms, I just laugh. I don't know what to say. 

 

[MTRJ75]

To add: It really messes with your mind too because you're always on the lookout for something I think. 

May have had this discussion somewhere else recently and I think it may have been Pistol, but sometimes, when there's an actual sickness or event, some of the other symptoms recede into the background because your brain is focused on something else at the moment and forgets to mess some other stuff up. 

[Pistol]

2 hours ago, MikeO said:

I am still struggling with this. Seemingly i can be fine one moment and then turn for the worse. Ranges from sudden bp drops, blurry vision, fainting or passing out hearing changes, sudden GI problems. I have tried to keep my system consistent just does not seem to work at times. 

Well Mike, I am sorry to say but that is why we call dysautonomia a DISORDER! There is no rhyme or reason to it at first, until we learn to identify triggers, symptoms, warnings ... and no, it will never be consistent, never the same, never controllable ... but we CAN learn to conquer!

[MikeO]

15 hours ago, MTRJ75 said:

o add: It really messes with your mind too because you're always on the lookout for something

Hit this on the head. Every time i put my guard down i get caught with an unpleasant event. Kinda like when one of my cats would go into stalk mode. As soon as you were not looking i would have a kitty hanging on my shirt.

14 hours ago, Pistol said:

but we CAN learn to conquer!

Pistol thanks to your help i am learning, i am just not as good as you are yet. I am just venting because i passed out twice back to back on Saturday while getting off the recliner watching tv. 15 mins before i did get up multiple times with no issues so i was caught by surprise. Upside the landing was nice and soft.

[TCP]

Sadly that’s the nature of the beast. I know it gets worse with stress, fatigue, Illnesses, vaccinations, foods, meds and pain etc. Each day can be different and sometimes the symptoms can plateau, worsen or lessen over time. 

[Bergbrow]

That variable up and down multi/varied symptoms are the hardest to explain and understand even for my doctors. If there isn’t a perfect dot-to-dot line to a clear diagnosis, many doctors can’t connect the symptoms and are clueless/misdiagnose.  This whole thread I feel like I’m reading straight from my own mind.  I can’t seem to get any consistency either and I know we are all vigilant about triggers but there are always symptoms we just cannot manage. It’s been unbearably miserable, frustrating and isolating.  Hearing from all of you is what’s been keeping me sane while dealing with this. 

[Sushi]

18 hours ago, MTRJ75 said:

To add: It really messes with your mind too because you're always on the lookout for something I think. 

May have had this discussion somewhere else recently and I think it may have been Pistol, but sometimes, when there's an actual sickness or event, some of the other symptoms recede into the background because your brain is focused on something else at the moment and forgets to mess some other stuff up. 

This raises another aspect: neural pathways. I don’t know if anyone here has worked with neural plasticity and brain training, but I find that there is something to it. For me, there is a difference between routinely scanning my body for autonomic problems, and simply recognizing them and responding to them when they occur.  The routine scanning is, for me, like greasing the neural pathway. Our experience of ANS symptoms sometimes receding into the background when we are having some other type of medical event, is interesting.

After long experience, I have pretty good sensitivity to triggers and try to avoid them. This makes scanning much less necessary for me. 

[MTRJ75]

I agree @Sushi

A big part of a lot of those programs is to convince yourself that you're already better and try to pay as little attention to symptoms as possible after you do what you can. It's helped my reaction to certain symptoms so as not to make them worse and I think it's sometimes helped me recover a bit more quickly, but I still have a question that never gets addressed. 

What if the problem is autoimmune in nature. If autoantibodies are attacking your neuroreceptors and not just destroying them, but causing them to act erroneously, as theorized, don't you have to stop that before you can truly heal? 

[Sushi]

30 minutes ago, MTRJ75 said:

What if the problem is autoimmune in nature. If autoantibodies are attacking your neuroreceptors and not just destroying them, but causing them to act erroneously, as theorized, don't you have to stop that before you can truly heal? 

I don’t think that the ‘good’ brain training programs are suggesting that you ignore symptoms and not take any medical action possible to deal with them, but rather to reframe your response to troubling symptoms as they arise, moving your response from ‘OMG I am in real trouble here—once again,’ to ‘okay, this is happening, what is the best way to deal with it?’ The idea seems to not set off the alarm bells in the sympathetic NS. So, say I start to pass out—rather than reacting with ‘ Yikes, I am in big trouble!’ I might rather go with, ‘Oops, I stood up too long again. I’ll just sit/lie down and drink electrolytes/take a med (or whatever) and try to remember not stand up so long and be more aware when subtle symptoms arise.’

It is weird but I seem to have tamped down my response to what feels like (and may be) medical emergencies to a sort of pragmatic response. Last week I had complete heart block (the signal for the heart to beat was completely blocked). I sent my electrophysiologist a Kardia Mobile generated ECG and she emailed back immediately asking me to come right in. I was really dizzy and short of breath so a friend brought me in—but amazingly, though I recognized that this was a very serious symptom, panic didn’t kick in. Luckily I have a pacemaker that MY EP could read and see what was happening. It had been caused by a drug that I had taken for years. Even when I was told what was happening my response was still surprisingly pragmatic: ‘What are we going to do about this.’ I was actually surprised that  the OMG response never arose.

[MikeO]

15 minutes ago, Sushi said:

I don’t think that the ‘good’ brain training programs are suggesting that you ignore symptoms and not take any medical action possible to deal with them, but rather to reframe your response to troubling symptoms as they arise, moving your response from ‘OMG I am in real trouble here—once again,’ to ‘okay, this is happening, what is the best way to deal with it?’ The idea seems to not set off the alarm bells in the sympathetic NS. So, say I start to pass out—rather than reacting with ‘ Yikes, I am in big trouble!’ I might rather go with, ‘Oops, I stood up too long again. I’ll just sit/lie down and drink electrolytes/take a med (or whatever) and try to remember not stand up so long and be more aware when subtle symptoms arise.’

I agree with this approach. I know when i first started having reoccurring symptoms i would panic a bit (more like a lot) not so much anymore (well just a bit yet). It maybe i just adjusted and accepted what i go thru and with help @Pistol have been getting better avoiding trouble without having to consciously be thinking about. I do still get taken by surprise at times but have been adjusting the best i can.

I do take the approach if you fall off the horse get back in the saddle.  

[MTRJ75]

51 minutes ago, Sushi said:

I don’t think that the ‘good’ brain training programs are suggesting that you ignore symptoms and not take any medical action possible to deal with them, but rather to reframe your response to troubling symptoms as they arise, moving your response from ‘OMG I am in real trouble here—once again,’ to ‘okay, this is happening, what is the best way to deal with it?’ The idea seems to not set off the alarm bells in the sympathetic NS. So, say I start to pass out—rather than reacting with ‘ Yikes, I am in big trouble!’ I might rather go with, ‘Oops, I stood up too long again. I’ll just sit/lie down and drink electrolytes/take a med (or whatever) and try to remember not stand up so long and be more aware when subtle symptoms arise.’

It is weird but I seem to have tamped down my response to what feels like (and may be) medical emergencies to a sort of pragmatic response. Last week I had complete heart block (the signal for the heart to beat was completely blocked). I sent my electrophysiologist a Kardia Mobile generated ECG and she emailed back immediately asking me to come right in. I was really dizzy and short of breath so a friend brought me in—but amazingly, though I recognized that this was a very serious symptom, panic didn’t kick in. Luckily I have a pacemaker that MY EP could read and see what was happening. It had been caused by a drug that I had taken for years. Even when I was told what was happening my response was still surprisingly pragmatic: ‘What are we going to do about this.’ I was actually surprised that  the OMG response never arose.

Yes and that's the part of the program that's helped me. It's obviously much more than that. But it's not going to stop a chronic autoimmune process. 

That is really scary. This can happen w/ dysautonomia or was it just specifically a medication that caused it? This is obviously the biggest fear with PVCs is that the entire signal gets stopped. 

[MikeO]

4 minutes ago, MTRJ75 said:

This is obviously the biggest fear with PVCs is that the entire signal gets stopped. 

Just to add PVCs are normally benign only time they become relevant is because you are having a lot of them.  

[Sushi]

58 minutes ago, MTRJ75 said:

That is really scary. This can happen w/ dysautonomia or was it just specifically a medication that caused it? This is obviously the biggest fear with PVCs is that the entire signal gets stopped. 

It was the antiarrythmic drug Flecainide that I was taking to prevent Afib. I had taken it for about 5 years with no problem. The heart block symptoms came on over a few weeks but I did not connect them with Flecainide as I had been trialing a couple other drugs. I started noting the pattern of the symptoms in relation to the other things I was doing and it became clear that it had to be Flecainide. Flecainide is a tricky drug and its  effect on you can change. 
 

The strange thing is that my electrophysiologist thinks (and I agree) that my Afib was caused by dysautonomia. My hope has been that if my dysautonomia could be controlled/healed, the Afib would go away. But, they say that this won’t happen as the process of Afib itself seems to ‘train’ errant electrical patterns in the heart.

[MTRJ75]

That's another concerning theory I'd read before. Are ablations still contraindicated for the Afib if the person also has dysautonomia? 

Sounds like a terrible ordeal. Glad you seem to be handling it calmly enough. 

[MikeO]

50 minutes ago, Sushi said:

I had been trialing a couple other drugs.

can i ask what other drugs you are trialing?

[Pistol]

@Sushi @MTRJ75 @MikeO - ❤️

[Sushi]

1 hour ago, MTRJ75 said:

That's another concerning theory I'd read before. Are ablations still contraindicated for the Afib if the person also has dysautonomia? 

Well, it is hard to predict the outcome of ablations for people with dysautonomia and Afib as they often ablate autonomic ganglia in the heart and they don’t seem to really understand what effect would be for someone with dysautonomia—so I am hesitant. Ablations for POTS are, I believe, not usually helpful.

1 hour ago, MikeO said:

can i ask what other drugs you are trialing?

A new primary care doc insisted on weaning me off clonazepam for sleep. That was a long disaster and they were trialing me on non-Z drugs that had drowsiness as a side-effect—first generation antihistamines and tricyclics antidepressants. Of course they all had awful side-effects. After I consulted a chronic disease specialist on Zoom, he put me back on clonazepam! So I had assumed that the side-effects I was getting were from these drugs rather than Flecainide.

[MikeO]

18 hours ago, Bergbrow said:

That variable up and down multi/varied symptoms are the hardest to explain and understand even for my doctors.

This has been a long battle for me even though my Doctors acknowledge dysautonomia. I have done better putting symptoms into something that makes more sense for the Doc's. I remember the first time i tried to explain the Whooshing i would experience, nobody would get it or even understand it but they do understand feeling strong steady heartbeats with feeling lightheaded.

I do have to give my Cardiologist credit while on a video call recently i mentioned that my whooshing had subsided more with my new med changes he congratulated me even though said he does not understand it. I'll take that as progress.

[Bergbrow]

@MikeOI had to laugh at the Whooshing comment. I have been at that exact moment, with that exact word and yea, the doc didn’t get it😂thanks for that reminder that these sensations are REAL.

I’ve been getting better at trying to put what is happening to me into doctor speak to explain what’s been going on but sometimes saying Whooshing is more accurate. 

Your doc congratulating you on improvement while also saying he doesn’t understand and you calling it progress is very relatable. I think we are so desperate for any amount of relief and remedies we will take any form of progress even if it’s not clear why it works.