Dysautonomia

Let’s talk about this. Respectfully.

What do you know about it?

I honestly am not too familiar with the term. After a Google search, I learned it's an umbrella term for malfunctions of the ANS (Autonomic Nervous System) and includes several medical diagnoses. Also read that it relates to blood pressure or heart rate changes which can cause fainting spells, dizziness, vertigo, etc. Are there specific medications that can help manage symptoms and do certain stressors or anxiety make the symptoms worse and harder to manage? I don't know much about the ANS particularly so this is always an opportunity to learn. My other question is if a service dog could be trained to help episodes? I've seen videos of service dogs react to blood pressure changes in people, and alert someone when they are close to losing consciousness.

O sweetheart I am so sorry. I know you are so strong and spirited that no Dysautonomia can bring you down. They say the only remedy is discipline in these kinds of diseases. So there is a chance to get disciplined to where not only mastering your pain, but being able to master other part of your life as well and turning something outmost negative to such positive outcome. I know you could do that. I know your spirit.
I apologize for giving you advise. I know this is the last thing you want to hear. But My knowledge in this is very limited. And this is my way to express that I care.

Lots of love for you my old friend.

As you know this is all love, for I would never feel sorry for anyone, specially as strong as you.

“I learned it's an umbrella term for malfunctions of the ANS (Autonomic Nervous System) and includes several medical diagnoses. “

Yup, the autonomic nervous system is basically made up of the parasympathetic, sympathetic, and enteric nervous system ( known as the second brain). I still don’t know much about those systems. Learning as I go. POTS (postural orthostatic tachycardia syndrome) falls under the umbrella of dysautonomia. This is what my doctor thinks I have. (I’ll mention it later on).

“Also read that it relates to blood pressure or heart rate changes which can cause fainting spells, dizziness, vertigo, etc. “

Yup, I’m thankful I haven’t fainted. I’ve been closed to but haven’t. I get the dizziness all the time when going from sitting to standing. My heart rate sometimes can go from 50 to 100’s just to stand up. It’s normal to have heart rate variations but usually no more than 40 beats just from sitting to standing.) The thing is that I didn’t know. It’s been a long time since I felt my heart beat. I can feel it if I focus but then I don’t pay attention to what is around me. Now, just so you know, I haven’t have an official diagnosis for POTS. The official diagnosis is a TTT (tilt table test). I’ve have had other test done and everything comes normal. For instance, cardiologist ordered an ultrasound (echocardiogram, stress test, holter). I only had bradycardia (low heart rate). Normal heart rate is between 60-100 while at rest. Mine can go from 46-58 while awake and can drop to 39’s while sleeping. Now, there’s some athletes that can have low heart rate and they feel fine. For me, I feel exhausted and dizzy and so much more. (As per cardiologist, I’m out of shape. I’m not an athele). Anyways, what I know so far is that POTS is basically low blood volume. (But there’s more to it and it can get really complex).

“Are there specific medications that can help manage symptoms and do certain stressors or anxiety make the symptoms worse and harder to manage?”

There are medications that can help manage symptoms but this have to be given based on the individual and under medical supervision. Often is just by trial and error. They take one and if it works great. If not, try another and so on until they find the right one. For me, a nasal decongestant helped greatly. (I was given the okay by my cardiologist because my heart is structurally normal and I have low blood pressure for the most part). (Those with a heart condition need to consult their doctor before taking a nasal decongestant as it can increase blood pressure) Found out it helped me when I got covid. Lol if it weren’t for covid I wouldn’t have found out and I would probably be bed ridden. I take it as needed. My blood pressure can go as low as 85/45 and as high as 136/80. But when I feel good is in the 100/60. However, some people can go as low as 70/40 or as high as 200/100.

Anxiety can make symptoms worse. And often patients are treated as hypochondriacs because they can’t figure out what’s causing their symptoms. And sadly what’s seen on the surface is that the patient seems anxious/nervous and they just treat it as if the patient has anxiety and they attribute the increases and decreases in heart rate to anxiety instead of something else. There’s some that can develop mental illness just because no one can help them not believe them. Some have “episodes” or “flares” and when they get to the Emergency room, it shows nothing but those who seen the patient can testify that something was going on.

“My other question is if a service dog could be trained to help episodes?” There’s some people who have service dogs and help them. Thankfully, I’m not at that point.

I am unsure what cause my POTS but I’m managing. I think it’s something I have have since childhood. I can’t drink coffee nor alcohol without feeling well (I feel bad). Lots of water help. Since I drink a lot of water, I need to add electrolytes and some vitamins.

Symptoms like POTS can develop after a growth spurt, a viral infection (like covid) and other causes. Others can get it into remission. There’s many hypothesis right now. Nothing certain.

I just would like raise awareness of dysautonomia. My case is mild in comparison to what others are going through. I can live a normal life and function well. But the umbrella of dysautonomia is big and I’m afraid there may be people getting misdiagnosed and suffering.

If every single test they have taken by a doctor and everything comes back normal, there’s may be a possibility that it could be in the umbrella of dysautonomia.

“ They say the only remedy is discipline in these kinds of diseases. So there is a chance to get disciplined to where not only mastering your pain, but being able to master other part of your life as well and turning something outmost negative to such positive outcome. ”

^Sir, advice is always welcome. I’m doing much better. I’m learning as I go. I’m learning to listen to my body and most importantly… I’m learning how to breath! Cause there’s time I forget how to do that. I kind of have to retrain every part of my body. You know, I hated learning to drive manual cars. Automatic is easier.lol It seems like my body is now set in manual and I have to learn how it operates but there’s no instructions… I have to figure them out. I’ll be okay. I’m bless to have a supporting family and friends. I feel for those who don’t have any that’s why I would like to raise awareness someway or another.

Talking about advise luce ::
you have to completely change your mind set.It is easy for some and impossible for others. The world as you knew is gone. You are changed. Take it as a new born does:
adapt yourself. discover your adaptability beyond the level every other person could. My niece lost her eye to cancer when she was only 12 month old and. Two day after they pulled her eye out, when she return back, she started to play as usual like nothing happened. but we adult develop so much sorrows and self pity during our growth. Imagine you born this way and you have to deal with it , not as severe but like those kids who are born with no arms and learn to become a great painter using their feet.Kirk Douglas who I am not a fan of, in his autobiography describes a man who lost both of his legs in helicopter accident, though claiming that incident was the best thing that ever happened to him because after, he became a new human Bing and could comprehend world the way he could never do before.
Sometime God, nature..., whatever you believe, hurt those who are special for a a great unforeseen reasons. You are special, we all know that. Go find your reasons.

Changing mindset is a trick That I learned to attack a problem at the source. For example after a life altering accident one cannot face all the emotional outcomes of the harsh reality. it is so hard and consuming, but if one could change it at the source, the "mindset" it is another story. Mostly by accepting the new reality, by believing: if even the options are all lesser now, they still are infinite. And you know you subtract any number from infinite, it is still infinite, ( That is you Luce, Infinite= Everlasting)

Another example, it is so hard for someone who constantly tells herself (or him) :my party is always right from this political episode to the other, to learn the truth, until she changes her mind about the party itself, otherwise in the mind set of a party member, one is to argue with opponents about the correctness of every single or even simple fact, forever.

Once very young, I was at a lake with friends, decided to go for a boat-ride. You cannot believe how much I was disappointed for forgetting my cigarette pack in the car. I felt I ruined all the fun for me during that expensive ride on the lake.
But few months later, on the same boat, for the second time, with no cigarettes, I was having the greatest time because I attacked that mindset in the source. I quitted smoking sometime between these two rides. But the significant point is that the second time I was wondering where all those anxieties and ..., were all the sudden gone. I did not challenge them during these few months at all (which I knew were the most difficult thing to do). There were gone because there was no reason for them anymore.

The world as I knew it is still the same. It’s always been the same. If anything, it’s just starting to make sense as to why I find it odd that I didn’t enjoy doing most things that most people enjoyed. I didn’t feel well. Some activities or foods made my symptoms worse but I couldn’t explain what I was feeling nor why.

I’ll give you an example. Coffee for instance. There were days when I enjoyed the taste and I felt good when I drank it. But there were days when I felt like my heart was coming out of chest and my chest burnt so badly. I thought it was the coffee. Well, it wasn’t the coffee that caused the problem but it intensified it. Caffeine is an stimulant. It can increase the circulation of cortisol and adrenaline in the body. So, some days, my body seems to have a bit more cortisol and adrenaline. Drinking the caffeine is not a good idea. Anyways, I stopped drinking coffee years ago (could have a cup once in a while). But I wondered, why my body had a bit more cortisol and adrenaline?

Well, those with POTS usually have low blood volume. Blood is basically composed of plasma, red blood cells, white blood cells, and platelets.

Anyways, this is where it gets interesting. POTS can have different categories. There’s hypovolemic POTS. Hyperadregenic.

You can read more about it here:

https://www.hopkinsmedicine.org/health/conditions-and-diseases/postural-orthostatic-tachycardia-syndrome-pots?amp=true

Back when I delivered my first baby, I lost a huge amount of blood. I felt like how I am feeling currently. However, for me that was justified. Taking pills to increase ferritin levels under the supervision of my doctor helped tremendously. And I felt better not 100 percent but better. After delivering my second baby, I didn’t feel as bad but I had whole new experiences and different levels of pain. After march of 2021, I had another experience of different levels of fatigue and tiredness.

The answer to that was that something or a combination of things I did, lowered my blood volume. Blood was pooling at my legs if I stood up for too long. So if I moved, my heart had to work harder to deliver the blood. I was unaware of this. I only felt like something wasn’t right. It felt like my body was under stress but due to brain fog couldn’t think clearly. Now that I know, I wear compression stockings and I’m learning to adapt. I also noticed that if I kept moving I was pretty good. lol blood was circulating throughout my body but if I over did it I paid a big price.

But there’s more to having low blood volume… when eating the digestive system needs the blood to digest so the heart rate can increase and one can become bloated and feeling unwell. Some can link the unwell feeling and attribute it to the foods. But there’s way to adapt to it. For instance eat small meals throughout the day. After eating lay down for a bit and let the blood settle down. That way the heart doesn’t work as hard and the blood needed for digestion can do it’s job.

You're already mastering it. The science, the attention to the detail, that you were lacking that a little bit before( not recently, those time that we use to pm each other a lot). Please, take my advises, at least pay attention to them. I am not here to credit myself, I am just offering my experiences. Use to run a workshops.
So now I've learned that your were struggling for sometimes. I thought it was a new diagnosis. Which perhaps it is but it is also something that is going on for a while.
Another thing to implement is what native American do dealing with their old habits facing the harsh realities. It is a tactic they call it " not doing" of what we were doing before. In simple word by reversing our expectation and our thoughts. For example by instead of crying for, celebrating, our pains.

You're already mastering it. The science, the attention to the detail, that you were lacking that a little bit before( not recently, those time that we use to pm each other a lot). Please, take my advises, at least pay attention to them. I am not here to credit myself, I am just offering my experiences. Use to run a workshops.
So now I've learned that your were struggling for sometimes. I thought it was a new diagnosis. Which perhaps it is but it is also something that is going on for a while.
Another thing to implement is what native American do dealing with their old habits facing the harsh realities. It is a tactic they call it " not doing" of what we were doing before. In simple word by reversing our expectation and our thoughts. For example by instead of crying for, celebrating, our pains.

I don't know much about PoTs but I do know that it varies in intensity from person to person and can affect the quality of life in some to quite a high degree. Which it sounds like is happening to you. Self care measures do help and I guess you already know this but it can take a while to find out exactly the best measures to help, especially as the symptoms can alter with time.
It sounds like you are strong and determined but I know sometimes thing like this can begin to wear you down. All I can say is don't let it get the better of you. You may feel like crying and giving up as you try to change long lifestyle habits but stick with it and these changes will become second nature over time.
Often having a label can help you come to terms with an illness much better as there is a reason for what is happening to you and looking back, as you say, can make sense of things that often made no sense before.
As I say I know very little about the illness and I'm not about to try to teach you to suck eggs but I am always willing to be a sounding board if you want one.

^ celebrating our pains?

^ I can’t exactly do that … but I do understand what you mean. Right now, it’s more of acceptance and keep on moving. It’s about learning my new limits and learning how to work around them. Plus, it’s actually really interesting to learn how our bodies function. Also, I’ve been reading here and there about chronic illnesses like fibromyalgia, POTS, sleep apnea… and more. I don’t want to spread pseudo-science so I’ll just keep it to myself. I’m unsure at the moment how the “pseudo-science” relate to our current science but I’m seeing a connection.

A long time ago… I learnt that we can write a couple of poems each with different metaphors but ultimately all of them meant the same thing. It focused on the same thing. Not sure how to explain. It’s like it goes on a loop. Like some deja vu. Like hmm…kind of hard to explain.

But for the time being, I’ll just breath and I’ll come back some other day with a fresher mind. Or may be some one else has already explained it and I haven’t stumbled upon it yet.

Cassie, you are so sweet. Thank you.

Yup, it actually affected my quality of life but I’m slowly but surely improving. Thankfully, I found what works for me in terms of dealing with the POTS symptoms. Each day working towards increasing blood volume. Lots of water, electrolytes, compression stockings and exercise. The problem i was having with the exercise is that back on January 2021 i was walking twice a day with no problem. After march of 2021, boom! I didn’t know what hit me. Walking and running if I over did it could cause me arrhythmias. Suddenly I developed exercise intolerance. I kept trying to “exercise” but got worse. Turns out I needed to exercise while laying down and start building up the tolerance again slowly. I have other symptoms but currently undergoing some testing to find out if it’s what cause the POTS. But at least this other symptoms are tolerable. Will continue doing what I am doing.

In the mean time, I invite you and anyone reading this thread, to look into it. Hopefully, you’ll never experience this but if you do, you’ll have an idea. Or if someone you know is experiencing symptoms with no explanation may be this could help them?

I know currently, POTS is becoming more known because of covid. Some of covid long-haulers are experiencing it.

"Or may be someone else has already explained it and I haven’t stumbled upon it yet."
I don't understand.

"I can’t exactly do that … “ You are doing this already, every fiber of your being is engaged now. You growing wisdom you couldn't find in yourself. And most important one of all you are learning how to go with the flow.
One day my mentor threw me in the river. To swim in the river is ten times harder than to swim in the other bodies of water. To synchronise with the flow I had to experience a touch of death. Then all the sudden everything moved in my soul. River showed me how crude and inflexible I was, and I suddenly let go. Swimming in the river all the sudden was so easy. I felt like a feather, I swam hours on the river that I could not tolerate and was drowning in the first ten second. You have taken some of that shock. In your case the impact is very slow and your release is going to be gradual as well. But it is how it synchronize itself with your circumstance . And therefore, you cannot celebrate it ( your pain) right away. Your celebration is eventual. So, you must be more careful and more disciplined to avoid annihilation of your spirit.
Ha-ha look at me, talking like I know what I am talking about.
Your family are very important. But they are like canes. You must learn how to walk or stand up on your own. Only those who go through the real pain could "CELEBRATE THEIR PAINS."
Too much pain is no good, but no pain or little pain is also bad. A study flow of pains that you can eventually master or have the capacity of doing so, is the living.

But regardless of all this, whether you listen to any of my advises or not, you'll have always my love and support. Don't hesitate to ask if you need anything, ever!!

Thank you. I appreciate all your advices. I take them into consideration and some of them often pop to my head when I least expect them.

I used to “swim” in a river growing up. There were two rivers actually. They came together at one point. One was warm with muddy water and slow stream. The other was clear with rapid cold water.

As a child, I liked the warm muddy slowed one even when I couldn’t see how deep the water was… it was actually not deep. I could stand up and the water got to my waist. Plus, it was warm… however, one day, I ventured into an area of that river where I hadn’t being before. There was a bit of circular current and grabbed my attention. Well, bad idea. That was deep and I could not see it.

The rapid cold river had a lot of big rocks and the water was clear. I could see how deep it was. It was really deep. The depth scared me. If my uncle stood up, the water covered his hair. My uncle looked like a giant when I was a child. Since the current was strong, my parents didn’t let me jump into the water. But depending on the area of that river, we would jump from boulder to boulder. Once, I missed the landing and the current dragged me straight into my grandmas legs. Lol phew, I was saved by an angel. Eventually, I ended up enjoying both the rivers. Realized the muddy one could be more dangerous than the clear one but regardless both were beautiful.

I love two rivers. It sound familiar, like I've been there. But those river I saw in my dream were not shallow, gosh. As you might guess after all these years:: I am a dreamer.
Love you Luce!!

Luce you really are raising so much awareness!! I didn’t know any of this before, and I wouldn’t have known if you haven’t shared :)
So thank you for sharing <3
I couldn’t have handled it as good as you. You’re doing great ^_^

This thread's been very illuminating for me, I'll be honest I wasn't aware. Thank you for sharing your story with us Luce! I'm glad your managing and finding something that works for you!

Hi Luce.

I am sorry to hear of this condition, which i have never come across before. It must be so difficult to have to deal with. I admire you for writing this thread and being open about it, also educating on all illnesses is so important.
All we can do is push forward, and embrace what crosses our paths.

i can relate in a small way, as i have been diagnosed with 'Focal seizures' which come under the 'epilepsy' umbrella. Certainly in the way you describe some feelings, such as dizziness and feeling faint.

So many medicines, remedies etc out there, however we have no cure.

I am a strong believer that nature offers us everything for everything we need in to live life.

My personal choice is swaying towards a 'more natural' way. I have been reading a lot on CBD oil and its qualities, very interesting stuff. Also relaxing, breathing meditation and mind-fullness

again Luce thank you for sharing this and keep strong and positive, and definitely keep writing and scribbling :)

Mx

“I am a strong believer that nature offers us everything for everything we need in to live life.“

^ I agree. However, it can get really tricky to find what the body needs.

But for now, I can only say.., to those getting diagnoses. Like fibromyalgia… check your ferritin levels. Iron serum, total iron binding capacity, % of iron saturation. And the cbc diff.

just so you get the complete pic of how your iron levels are…

I haven’t come across CBD oil. Thank you. I’ll look into it.

I know my iron levels are high but my ferritin was low. I’m working towards increasing it. Once I have it around 100 (consider optimal for woman, high can be harmful). I’ll try to do a water fast. I’ll start slowly. Then I’ll increase it as how I can tolerate it.

Catching up on this thread and learning a lot! I definitely think you've already raised a bit of awareness, Luce, and I'm so glad to hear you have the support of family, friends, and are finding what works best for you. I also liked the part about you building up tolerance, knowing your limits, and overall listening to your body. Sounds very wise and wishing all the best for you, friend!

How are you Luce. This the time that I ask you how are you doing with your health situation, and if there anything you wish to share with us??

I’m doing pretty good. Thank you for asking.

I still don’t understand how everything works … but im seeing good results.

It appears understanding “histamine”, “oxalates” and salicylates”, it’s really helpful in treating symptoms.

Anyways, since I started feeling really bad, I started searching ways to help me improve. (This is what I have done. I’m not a doctor. Everyone is different and what works for some may not work for others. )

Increasing vitamin D helped with some of the fatigue. My vit d was always low. My doctor helped me with that.

Later, I started searching more and kept reading about ferritin and “adrenal fatigue”.

I’ve been focusing on increasing ferritin since my ferritin was low too even though my hemoglobin was always good.

I also came across this site:

https://drhedberg.com/the-ferritin-test/

I’ve been experiencing hormonal imbalances so I figured I should aim towards maintaining my ferritin levels between 100-150.

I’ve been taking prenatals vitamins (since it has everything b-complex, folate, magnesium etc). Also I’ve been taking a high dose of vitamin C.

Then I came across this textbook:

“Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition” by Derrick Lonsdale and Chandler Marrs

It mentions about the importance of vitamin B1 and mitochondria.

Then more recently, I came across this:

https://theenergyblueprint.com/fatigue-mitochondria/?fbclid=IwAR2SDR3CxS8xgVbPgwr8O36GqVsJlAJureUWXmJSMfVp66V1CpGcD0bmusY

The above also mentions about mitochondria but I haven’t tried the products from the author . I’m sticking to just vitamins and the foods I eat (at least the ones my body tolerates, it’s been tolerating more now yay)

I think even though I do eat, I think I haven’t been given the amount of food my body needs to function optimal. I need about 3000 calories per day to do everything I need to do during the day specially when I work..: And I was given my body about 1800-2000 on top I was drinking mainly water 2liters to 4 liters) and milk, no juices, no sodas (at some point my body stopped tolerating sugar but i don’t have diabetes). (No coffee, no alcohol may be occasionally like once or twice per year but my body couldn’t tolerate it). I’m also under lots of stress. Poetry has been helping me deal with it but it’s impossible to rid of it, stretching also helped .. Well, lately the stress it’s reducing thankfully.

Anyways, guess what? I’ve been taking vitamin b1. I started taking 100 mg. Along with my prenatal.
So it turns out that if we take any of the b-complex we need a b-complex.

I noticed an improvement in six months in regards to low heart rate. (I still have bradycardia but at least it’s not dropping below 45). Recently up the dose of vitamin b1, and I noticed an improvement in the apneas I was getting while sleeping as per my CPAP. However, I’m encountering some issues.

It seems vit b1, is sulfur base. So it has something to do with oxalates, and oxalates drive histamine… so it’s very important to take vitamin b1 with magnesium. It’s also stated in the textbook I shared above about dysautonomia.

By the looks of it, if we increase vit b1 we also need to increase b2. So I’m reading more into that. But in order for b2 to work, one must make sure there’s plenty of selenium, iodine, and Modbelyum in our system. There’s test to check for that. However, we should be able to get those from our foods.

Anyways, I feel good. I’m noticing improvement in my skin (it’s still dry but much better). I am also still tired but I can deal with this tired. Sleep helps with the tired I get now. From time to time, I still get some bad days but I think it has to do with salicylates.

I’ll continue with what I’m doing and will check with my doctor soon just too make sure my liver isn’t affected by the vitamins (specially vit b2) and to make sure my electrolytes are still shown within range ( though mine has always been within range but lord I’ve been needing a lot of those.) But overall, I’m satisfied with the progress. I need a year or two to see more results.

Also, another thing when ferritin levels were lower, it was harder to exercise. I’ve been doing the same activities prior to getting pretty bad, walking with kiddos per se, household chores, work… stretching… but if I overdid it, it took me longer to recover. Now if I over do it, I recover faster. So ferritin is really important.

However, I’ve been reading that high ferritin can also be bad. I’m aiming for optimal levels now. Average. In between. But mainly listening to my body.

Sorry for the long post.

Wow I am smitten by the clarity of your helth report sweetheart. You are right academically your not a doctor, But me and you both are doctors, you should know that. I never seen you this much knowledgeable about any subject before, even though you were from the top ten thinker amongst us. But I am so stunned by the way God granted you this gift.