Could POTS be Controlled by Brain Retraining?

[MTRJ75]

Last couple of weeks have remained up and down or no lasting improvement in other words. 

Neurologist's only suggestion is to increase Lexapro from 5mg to 10mg. 

Which leads me to continue to believe this is something I should be able to better control eventually through brain retraining. 

Which is also a source of frustration that I haven't been able to accomplish this yet.

[Pistol]

11 hours ago, MTRJ75 said:

Which leads me to continue to believe this is something I should be able to better control eventually through brain retraining. 

Which is also a source of frustration that I haven't been able to accomplish this yet.

@MTRJ75 - CONTROLLING the ANS is a pretty big goal! Many have tried and failed ... 😒

There is a concept called Limbic Reconditioning that is supposed to retrain the brain. It is one of those things where you have to buy the book in order to find out what it does ( tells you something right there ). Since I live in a completely cell phone free zone in the mountains we get many people from all over the US claiming to be sensitive to electro-magnetic waves from cell towers and powerlines, fluorescent lights etc. They move here with the book in hand but I never see anyone being cured... 

Retraining the ANS in dysautonomia may be too big a feat to take on - ? Since it is the AUTONOMIC Nervous system you may have less control over it than you wish. However - I have learned in my own life that the attitude towards our illness can give us back a great deal of power over our body. Simply realizing that I cannot change things, that i have to accept my limitations and then finding a way to live DESPITE of POTS has given me back a degree of power to live with POTS. Maybe that can be considered a type of retrainnig as well??????

[MTRJ75]

13 hours ago, Pistol said:

@MTRJ75 - CONTROLLING the ANS is a pretty big goal! Many have tried and failed ... 😒

There is a concept called Limbic Reconditioning that is supposed to retrain the brain. It is one of those things where you have to buy the book in order to find out what it does ( tells you something right there ). Since I live in a completely cell phone free zone in the mountains we get many people from all over the US claiming to be sensitive to electro-magnetic waves from cell towers and powerlines, fluorescent lights etc. They move here with the book in hand but I never see anyone being cured... 

Retraining the ANS in dysautonomia may be too big a feat to take on - ? Since it is the AUTONOMIC Nervous system you may have less control over it than you wish. However - I have learned in my own life that the attitude towards our illness can give us back a great deal of power over our body. Simply realizing that I cannot change things, that i have to accept my limitations and then finding a way to live DESPITE of POTS has given me back a degree of power to live with POTS. Maybe that can be considered a type of retrainnig as well??????

There are many books and programs which propose that they can teach you to do this. It seems the books mainly try to explain to you what's wrong. I've enrolled in one such program after reading their book and it does make some sense. 

I don't want to ramble too much, but I've meant to start a conversation about this for a while. 

Actually, from what I understand, the acceptance mindset is supposed to help a great deal. Perhaps harder for me because I'm on my own for the most part and things need to get done. It's acceptance that you can't change anything immediately when symptoms strike at least. And then the ability to not worry about them. But then you also have to convince yourself that you're fine and healthy already. 

I have the perfect plan whenever I'm not feeling too bad. I know exactly what I'm going to do next time symptoms pop up. They're only temporary and no problem what so ever. 

Of course, once the worst symptoms hit, it's a completely different story. It generally ends up somewhere between anxiety and frustration rather than acceptance as I calmly explain to myself exactly what's happening to my body. 

But my thought here is that Lexapro is a medication generally used to control anxiety by changing brain chemistry. I know that people have recovered from anxiety without medications. In essence, they've changed their own brain chemistry by changing their thoughts. They've had the same effect as the medication on themselves. 

Why can't this be the same? 

I also wonder if this ties in with my post on stem cells/exosomes, since it's essentially used as a form of reprogramming in this instance. 

[Pistol]

9 hours ago, MTRJ75 said:

But my thought here is that Lexapro is a medication generally used to control anxiety by changing brain chemistry. I know that people have recovered from anxiety without medications. In essence, they've changed their own brain chemistry by changing their thoughts. They've had the same effect as the medication on themselves. 

@MTRJ75 - well, anxiety CAN be handled without meds; counseling and therapy can totally help with that. Breathing techniques have long been proven to help overcome anxiety and even panic.  However - anxiety can have completely different causes. It can be result of thoughts or feelings - but it also can be caused by a physiological reason, such as neurotransmitter imbalance ( hence SSRI's etc ). So it depends on the type of anxiety you suffer from if a retraining program would help. A neuro-psychologist who did an evaluation on me once explained that in POTS our PHYSICAL symptoms mimic anxiety - but also TRIGGER anxiety. So in POTS often anxiety is not the cause but a symptom. Therefore reprogramming may not help - but relaxation techniques have helped me to overcome adrenaline surges without having seizures, as long as I do them immediately upon onset of event. 

I am glad you started this post - no doubt there are many opinions and even experiences out here regarding this. 

[MTRJ75]

@Pistol I completely agree about the anxiety. I never have thoughts trigger physical symptoms before the physical symptoms have been present for quite a while. However, a skipped heartbeat or two will automatically trigger sort of a fear response as will the shaking and sweating sometimes no matter what I tell myself. Of course, that's had no bearing on the multitude of doctors telling me what I suffer from is more anxiety than anything else. But either way, there has to be some kind of connection in both processes. 

The retraining program I'm participating in does have members, including the owner, who claim to have recovered from POTS (no mentions of particular sub-types though and of course, the recoveries aren't necessarily because of the program). 

I want to add as an encouraging example, I could be feeling poorly and get a phone call from a friend and then notice I feel much better afterward, even if it's only temporary and doesn't always work with much worse symptoms. I was talking to a friend this weekend and his parents were over, who I hadn't spoken to in years. His father had me laughing so much that I realized I felt much better afterward. 

I also feel like the distraction has to be organic too. I can't just make myself focus on something else, but something organic like those phone calls can readjust my focus. 

As far as relaxation techniques, I have had poor luck with them and I believe it's for a couple of reasons: 

1 - Slowing down my breathing seems to exacerbate the heart pounding or at least make me more conscious of it. It quickly becomes very uncomfortable. 

2 - Secondly, some of the medications I'm taking, particularly for the Sjogren's I think, cause fatigue. Whenever I've tried one of these breathing or meditation exercises for more than two or three minutes I end up with greatly increased fatigue and what I'd call a death ache. (While a great part of this particular program includes meditation, I've actually felt a bit better when not doing it.)

 

[Pistol]

@MTRJ75 - laughter is a powerful medicine! It releases "good" hormones and helps with oxygenation, it also causes vasodilation. A good relaxer!!! So: 🤣😂😄

[MTRJ75]

This recent blog post seemed pertinent: 

https://www.healthrising.org/blog/2020/11/22/autoimmunity-b-cells-mitochondria-happiness-chronic-fatigue-syndrome/

Quote

Those patients with a significantly higher frequency and/or intensity of positive or uplifting events tended to be the ones who said they were improved at the end of six months.

People who reported more “uplifts” – very positive activities in the day – tended to be the ones who improved the most. 

I suppose it could be argued that how do we know it's not the other way around - the patient who feels better then has more "uplifts", as is argued in the comment section, but perhaps whatever brain chemicals are released by these uplifting events counteract the dysfunctional signals being sent out. 

[Pistol]

@MTRJ75 - here is what happened to me: when I was at my worst with POTS symptoms and lost my job I became very depressed and could not function at all. Every day was a chaotic up and down ( literally 🤣 ) of passing out or having seizures when I did anything or being confined to bed. I truly felt like giving up. Once we found proper medications and treatment for most of my symptoms I could work on accepting the reality of my condition and eventually I was able to climb out of that dark hole and shake the dust of. Today I am in a much better place ( although nowhere near being cured ). 

So - you could argue that the fact that I overcame my depression improved my symptoms - but I know that for me I became a happier person once my symptoms were under control. 

Of course there are different severities of dysautonomia, and Many improve for good or for periods of time. And I would also agree with the point you made above: people with less severe symptoms are ABLE TO HAVE GOOD MOMENTS, therefore it is possible that they have - or had - a less symptomatic type of POTS. I know of many people who experience only short bouts of symptoms and function relatively normal in between flares, and Others who are sick for a year or two and then recover almost completely. So in these instances one could argue that with less severe symptoms and a good prognosis the quality of life is such that positivity and happiness can still be found every day. 

[toomanyproblems]

I've often wondered if one could *force* ones parasympathetic nervous activity to overcome sympathetic over-reactivity. For example if you did yoga and meditated for x numbers of hours a day, could you influence the autonomic nervous system control failures present in hyperPOTS? Is this something that is a cycle that can be broken and better balance between the sympathetic and parasympathetic nervous systems established that could lead to a more permanent fix? Does it matter how long this bad cycle has been going on or how debilitated you are? Does it matter why you have POTS, which is a syndrome meaning not one specific disease but a something that can have a variety of causes? I believe it's well known that the younger you are, the better chance you have for recovering from POTS.

I actually think about these things all the time, because I tend to always be looking to the future for things that help. Unfortunately, I have some personal evidence that whatever is the problem with me causing this syndrome (almost certainly autoimmune in nature in me) it keeps trying to re-break with the things I've tried. One example I'll give for this unfortunate conclusion is the many sessions I had doing something called QEEG based neurofeedback with a very skilled practitioner. I won't explain the science and technique, and I don't have a good link handy, but you can look it up. I could definitely feel the progress, and it helped me while I was doing it, but my brain went back to being broken as soon as it could. In fact we had trouble making any progress after a certain point. You could see objective evidence of this in the tracings. Another example is trying to correct low blood volume with lactated ringers IVs. I've tried this several times (over time) and while it might make me feel better temporarily, I just end up peeing off the fluid until I'm in the same hypovolemic state again each time. I've done some other treatments or techniques too, but these are two that come to mind right off. That these  various things I've tried and ultimately failed only ending up being a patch suggests that there is a core problem that is not being addressed and fixed. I'm not saying these things aren't useful, or that they don't help perhaps to temporarily break the cycle and improve control and balance over the broken parts, I'm just always trying to figure out the core problem.   

The core problem causing POTS is likely different in different groups of us, depending on why we have POTS. And whatever it is, it appears to be a moving target in many of us in that there are periods of time when we have flares and periods of time when we are better or more stable. Are these times when for whatever reason, drug treatments, happy events, IV fluids, yoga, etc., have broken the cycle enough that our parasympathetic nervous systems can scratch and claw their way back into the picture more? How can we recreate that sympathetic/parasympathetic balance that we need and make it stay regulated. I think many/most of the findings in studies of POTS and similar diseases are just showing the downstream effects of this unbalance, not the core cause. But I would be really, really happy to be wrong about that.

The blog post by the OP has some interesting information and conclusions from studies. I've tried to increase my "happy time" because the last few years have been very stressful for me emotionally and physically. It certainly helps and I'll take something that helps even if it's only a patch on the core problem over nothing any day. It could be breaking the cycle well enough for long enough *is* the fix of the core problem. I just wonder if any Tibetan monks, who are supposed to be the happiest people in the world, have POTS.  

 

[Pistol]

1 hour ago, toomanyproblems said:

Another example is trying to correct low blood volume with lactated ringers IVs. I've tried this several times (over time) and while it might make me feel better temporarily, I just end up peeing off the fluid until I'm in the same hypovolemic state again each time.

Yes, this is to be expected. IV fluids are not a cure but rather a treatment, therefore it is not a once-and-done treatment. In order for IV fluids to be effective they have to be given periodically  (at least ), as needed or regularly scheduled. I tried all of these and only weekly and more if needed does the trick for me. Even LR only stays in the system for so long, just like any other medication ( BTW, IV fluid are considered medications ). 

[toomanyproblems]

6 minutes ago, Pistol said:

Yes, this is to be expected. IV fluids are not a cure but rather a treatment, therefore it is not a once-and-done treatment. In order for IV fluids to be effective they have to be given periodically  (at least ), as needed or regularly scheduled. I tried all of these and only weekly and more if needed does the trick for me. Even LR only stays in the system for so long, just like any other medication ( BTW, IV fluid are considered medications ). 

I understand all of this. I didn't just have an infusion and decide it wasn't worthwhile. I'm not saying it's not worthwhile. I still do it. Even over the past few weeks I've been regularly doing them. My point, which I guess got missed from my not communicating it well enough or rambling too much, is what is the core problem, and can we actually cure it by breaking the cycle of imbalance well enough. Is there a tipping point we should strive to get closer to in hopes of restoring normal control over our sympathetic nervous systems? Or are there elusive core problems that will be difficult to tease out and address for actual cures. Not a lot is known about POTS.

I know you've had an increase in quality of life due to LR infusions. I'm sure this would be true for many if they could get them. Please understand I'm not trying to argue that they're not helpful. In my case and I'm sure yours, every treatment that adds even a little to quality of life can combine to make us more functional and closer to normal and that's a good thing. 

[MTRJ75]

6 hours ago, Pistol said:

So - you could argue that the fact that I overcame my depression improved my symptoms - but I know that for me I became a happier person once my symptoms were under control. 

Of course there are different severities of dysautonomia, and Many improve for good or for periods of time. And I would also agree with the point you made above: people with less severe symptoms are ABLE TO HAVE GOOD MOMENTS, therefore it is possible that they have - or had - a less symptomatic type of POTS. I know of many people who experience only short bouts of symptoms and function relatively normal in between flares, and Others who are sick for a year or two and then recover almost completely. So in these instances one could argue that with less severe symptoms and a good prognosis the quality of life is such that positivity and happiness can still be found every day. 

On the bolded points: 

1 - Yes, absolutely. It's like the anxiety thing. I'm not anxious and therefor have symptoms. I'm anxious because the symptoms feel life threatening. It's difficult to be happy when you have all these symptoms, but I know certain unexpected positive distractions (say a phone call) could leave me feeling temporarily better (maybe because my brain forgets what was wrong for a few minutes/hours?)

2 - Believing that I am one of these people and that this is all temporary is what often gets me through the roughest periods or the feelings of being trapped in my own body with some sanity at the worst of times. 

@toomanyproblemsI could have written that same post. I haven't tried the same alternative therapies, but many slightly crazy, expensive treatments that seemed to have some positive effect, but only temporarily. 

The theory I'm sticking too is that the brain was powerful enough to break everything then maybe it's powerful enough to fix it and if it's autoimmune in nature (which I suspect in my case too, even though I've tested negative on everything by two rheumys - and I know I have Sjogren's) then perhaps that's a positive because there's still hope for a treatment to the main cause and perhaps there's a way to fix that too. A lot of people recover from autoimmune diseases with some substantial effort. 

As I've understood it, two of the keys from people who claim they have recovered using mostly neural rewiring techniques are: 

A -  Ignoring the symptoms - impossible to do in our case. 

B - Believing we are already cured. Making up and believing some random excuse for our symptoms rather than admitting we are sick. Yes, this is lying to ourselves. Just saying everything is perfectly fine and I just choose to rest most of the day. 

[Pistol]

9 hours ago, toomanyproblems said:

My point, which I guess got missed from my not communicating it well enough or rambling too much, is what is the core problem, and can we actually cure it by breaking the cycle of imbalance well enough. Is there a tipping point we should strive to get closer to in hopes of restoring normal control over our sympathetic nervous systems?

@toomanyproblems - that is something the specialists are working hard on, I am sure. For the past 25 years they have been putting the pieces together, observing, listening, trying. And with the research they have been doing and the treatments they HAVE found things are looking less grim, and there are more and more physicians open to acknowledging POTS. However - I do not believe we are anywhere near being able to pinpoint a way to overcome the dysfunction, or to be able to control the uncontrollable. Personally I put treating the symptoms before finding the cause - simply because we need to feel better NOW! 

Dr Grubb gave hope to new findings possibly leading to ( one ) cause of dysautonomia in his talk at the DI conference in October - it is that they found evidence that autoinflammation plays a role in it. Hopefully this will lead to more effective and reliable treatments. .