Nelson G.

Hello everyone, I am sharing a post I made at reddit a few minutes ago. Many of us have been told that dysautonomia resides in our mind. That our symptoms are created 'up there' in our head. Even if the tilt test came out positive. So I was wondering if any of you have ever accepted this premise. Have you ever affirmed 'Yes. All these symptoms are in fact created in my head, because I am anxious/depressed/[fill]'? ____ why I ask. unnecessary to read anecdote. The last cardiologist I saw the other day came up with this hypothesis —after a long time not hearing it— that dysautonomia and POTS was in my mind, he even pointed his head with his index finger, my tilt test came up positive 9 years ago, and he told me that if I actually had dysautonomia I'd be dead by now, and that dysautonomia in younger people is rather rare if not impossible (i'm 27). The cardiologist btw, has wrote tons of documents about syncope, pacemakers, abnormal heart rhythm, etc, I have to say I was rather shocked by his response, he took my pressure while laying down, then while standing, and 'confirmed' his hypothesis because my bp went up, then told me to 'go on with life'. Anyway, while I was returning home I noticed that I wasn't frustrated, but rather fascinated by that hypothesis, I've read hundreds of people that suffer a lot (me included) when their doc implies 'c'mon, you know you're making it up'. So I questioned myself, 'what if somebody actually said 'you know what doc, you're right! It was all in my mind''

Yes, brainfog, I really ******* hate it, not sure if there is a way to improve it. There are days where I am very fluid, but most of the time I feel like the closing words are at the tip of my tongue but they don't come out. Or even sometimes I have something to say when people are already on a different topic.

I've never had them. In my opinion cheap vitamin supplements may cause kidney stones.

What you're experiencing was something I felt immediately after arriving back to the high altitude city back in 2014. 5 months later I was diagnosed with Dysautonomia and POTS after many tests for other diseases. About my feet and energy levels, they totally improved if they are not healthy again. I still have stomach issues, but I'm not doing my best to eat healthy/more salt. But out of nowhere I can also eat more carbs, and pasta here is delicious. My gf also happens to cook delicious. So I am in a bit of a trouble controlling myself heh. Not surprising after almost a decade eating nothing but chicken and veggies. I mean they're tasty but you can get crazy if you crave something else and get very sick if you eat that crave. I don't want to introduce Coca Cola back to my diet, but I also don't want to be sick just because I drink a can. Or ate pasta. whatever. I still feel odd when standing for too long, or feel odd palpitations from time to time, but to be honest this is not even 10% of what I was dealing in high altitude. Not sure if my case is unique. Only way to know is to meet somebody that happens to be born in a high altitude city and also happens to have dysautonomia. All I know is that POTS stabilized a lot. And my Spo2 and HR are pretty much normal again. The very first days (summer) were a bit scary because my feet and legs were very swollen an red, but I couldn't ignore the fact that I was seeing some blood return while walking, and very fast blood return while resting. Right now I am off compression stockings. And my feet don't swell that bad anymore. I am very surprised.

I did maca for a long long time and nothing like that happened.

Great, thanks for the correction. Just wanted to write a follow up on what I said last year. TL;DR: If you have POTS/Dysautonomia. Avoid living in high altitudes. It seems obvious. I mean, not only because you have less oxygen, but because in general we as species wouldn't be able to evolve or adapt to the environment without our autonomic nervous system; If ours is impaired, we know —in our case directly— that we can't adapt that easy, or, at all, to summer, sometimes rain, sometimes cold, or in this case high altitudes. Healthy people, or even athletes, do adapt to high altitudes, after several days (depending on how high the altitude). I don't know at all the physics of high altitudes, meaning I've seen soccer games played in La Paz, Bolivia, and they can kick the ball from 40+ yards, with so much violence and speed right into the net, that can't happen anywhere else let me tell you that. Everything changes so much, not only oxygen levels, if healthy people can get altitude sickness, if their nervous system is under stress, and struggle to adapt, on top of that altitude craziness add rain (changes in barometric pressure which already is hard to adapt to), or intense sunlight, well on top of all of it, add dysautonomia. At some point is just detrimental, you will notice something becoming 'progressive' in a bad way, in my case I never adapted fully. Just wanted to say that I've been a week now in a different country, and I am doing extremely well. Not bedridden anymore, doing lots of stuff. Spo2 98-100 since I got out of the plane (never lower than that, I barely use my oximeter now, I just feel perfect in that regard). I can't walk that much because too many years being sedentary (my knees and feet are in pain, but they're getting in shape quickly), and here down south we are dealing with summer. Not as scary as I thought (my very first summer ever), but the first 2 or 3 days I did scared my girlfriend because my feet were very red/purple, and I was about to faint. I wasn't surprised. Still adapting. I need new, tighter, stockings. And better hydration. The flight was a nightmare tho, specially when we were gaining altitude. I literally felt my soul escaping my body for 3 seconds. But I didn't passed out. It was almost like a psychotropic/paranormal experience. Fun to remember. Still felt like #$%!@ that moment. I had elevated HR during the full 6~ hours. never bellow 101. 140 the highest. But I survived, and it only took me a few steps outside the plane to know I did the right thing abandoning my homeland (Bogota, Colombia), because it is not the highest country, but boy that it was high.

Hmm. Them telling me 'just avoid hitting your head' kinda has a new meaning after reading your comment tbh.

Oh, I am also relying on potassium and magnesium, because beta blockers and similar tend to give me extra/new symptoms. I was having a bad season of bradycardia since november and mid january, I was not used to it, I was in so much discomfort, anxiety, trouble standing or even sitting, pretty much fear of my heart stopping or passing out while resting (so unlikely... in fact the heart fills with more blood, thus my spo2 was in all time high leves 98-100). The thing is I caught COVID in late january, and for some kind of reason my POTS/Dysautonomia symptoms disappeared for a while, and then they came back (d'oh), but no more bradycardia, I am left again with my usual symptoms (high HR, 93-96 spo2, stomach issues and a huge etc) but after 8 years of the same symptoms I can manage them easily, new symptoms, no thanks, I was so depressed. The downside is that my holter and echo date was delayed thus I will probably get them done without the symptoms I was having before being asked to get them done, still worth checking them!, I haven't got any of them since I got diagnosed in 2015. Now, in November my bradycardia symptoms improved for about 2 or 3 weeks after receiving (by protocol/coincidence) a common saline IV. I will ask my new cardiologist about it later next month.

I almost cried reading this @cmep37 Because 99,7% of the times I went to see a doctor it came out to be like yours. Can I rant here as well? maybe we need a rant zone LOL: I wonder what will happen when I see a cardiologist (hopefully soon) because I am dealing with something similar, since November I was dealing with awful vasovagal response to eating/swallowing, peeing and standing, and maybe when I have bowel movements, it kinda got better for a while, but lately it got very bad, it became plain low HR, around 58-66, which sadly, for a cardiologist is not alarming, the thing is that ever since I got diagnosed in 2015, my HR was more on the faster side, around 78-100 when resting. And boy that I feel awful with this new low HR. I feel like passing out all the time even when resting, or like my heart is about to stop because I am not used to it. 2 weeks ago I was eating dinner and my HR was so irregular, it was fast after sitting and after a few bites it was reeeally slow, almost struggling to beat, I touched the left side of my chest out of instinct, and felt a bit of pain, that later was increasing, I tried not to panic, but then I felt my heart ‒I swear to god‒ like it had stopped for a moment and I immediately felt like collapsing and my eyes struggling to focus on things, I thought 'this bad', so I told my parents to take me to emergency, the doctor, pretty nice lady at first, asked me why I was there, so I told her everything (my chest was still in pain), and she asked for an ECG right away, I went there, and as soon as she read it, she looked at me with UTTER DISGUST. And told me 'You've got nothing!'. BUT SHE NOW SEEMED ANGRY AT ME. I WAS LIKE HAPPY THAT MY HEART WAS FINE, BUT AT THE SAME TIME I FELT EMBARRASSED? and she listed aaaalll the things I didn't got, 'You don't have arrhythmia, you didn't had a heart attack, you didn't had a stroke, ischemia' and endless stuff, I wanted her to stop, I had gotten the message, but she was like in this 'get over it' and 'get out of here' tone? I thought my skin was already hard enough after so much crappy experiences, I've been treated worse after 'having nothing', but this one really made me cry on the way home, she really made me feel guilty and embarrassed. Anyway, ever since, my HR is still very irregular, and I feel in general very POTSy, way way more than usual, blood pools to my feet easier than ever, specially at night, and while that happens I get an uncomfortable slow HR with palpitations, when standing or resting I also get palpitations and low HR out of nowhere, and it makes me feel like collapsing, my knees become rubber, and if I am resting I feel lightheaded, I've been doing cardio exercise with no issues (in fact the best days are when I do cardio) but resting days SUCK, these palpitations feel like my heart/valves are not doing well at times. So I want to get a Holter, and an echo... but no matter how bad I feel, I kinda get the feeling I only meet criteria for Holter... I am still very young, so it is very hard to get an echo even if my last one was 8 years ago, but back then I had similar symptoms along with heart murmur and unbelievable chest pain (way worse to what I've been feeling lately, with the one I've been feeling lately I can still talk and shake it off, 8 years ago it was such a pain I would stop talking mid sentence and I would soak in sweat out of pain, while touching my chest, it was pretty scary, not even the docs dare to say it was nothing, well, that before the several echos that were normal, then they were like 'it's nothing'). Still, I haven't fainted or collapsed ever in my life, I only have awful near syncope and since I am always at home I sit or go to my bed right away, so with no loss of consciousness the doc is obviously going to be like 'well you ain't doing that bad are you' regardless the fact that I haven't been able to leave the house in years. All I want is to know if my heart structure is still fine, valves and everything, I want peace of mind, in fact, I believe is the most prudent thing to do. IRONICALLY, like al the handful of doctors I saw on emergency the last 2 months, I also believe it seems to be neurocardiogenic/vasovagal mediated, and well... the answer to my stuff seems to be the good old "you've got POTS/dysautonomia"; One of the doctors I had in late november, I remember, young lad, full of energy, was like 'yeah, well, if dysautonomia is the answer to any of the symptoms you may feel that might be bias/slant' you know? like, saying oh well it's your old dysautonomia could make them slip past something else, and I was like WOW I've never had a doc with such attitude. Well... 6 hours after routine tests he was like 'just avoid hitting your head if you have syncope', it didn't surprised me at all we pretty much ended up answering all my symptoms with dysautonomia, but I feel bad for him as I felt I wiped out a bit of his youth specially when after he went on to touch my throat for any lumps or thyroid issues, he dropped his hand in a clear sign of 'd*****!' hahahaha I may sound crazy, but I actually laughed a bit behind my mask, because he had such attitude of 'I am going to find your problem here, and if I don't, then in here!' and in my mind I was like 'doc if only you knew how much other doctors have tried already'. I still had fun that day, I wish at least they tried like this guy. Which brings me to... aside from his full of youth attitude, I had fun because he accidentally gave me an IV lol... it was part of the routine in case sudden nursing care was required given my symptoms... but boy that I felt AMAZING. BAM! like new, when the nurse told me to get ready for IV I was like OMG it's been SEVERAL years since I got an IV I wonder if I will actually feel better (given the fact I wasn't aware it was a bit common for dys/pots patients to get casual IVs), and I did felt amazing... My hope was to tell my cardiologist if I could get an IV every now and then... but reading OP... In the UK/Europe... getting told all those things about 'not believing everything you read' ... man, I will try, but I come from a country where health care SUCKS not only because of bad doctors but because of resources. Third world as h***!, I can't hope for much, It's hard to explain anything to them when they act ecclesiastical when it comes to medicine, which sucks when most of us kinda get the feeling we know a thing or two about dysautonomia that they either ignore or are skeptic. I still remember when in 2014/2017 I had to explain two doctors what was dysautonomia, I am not exaggerating.

That video about MALS was very very interesting.

good lord that looks delicious.

From what I read if such thing appears in a ECG, a second one must be done to ensure it was placed the right way, did you got a second one?

Have you tried Vitamin C?

@MikeO OMG That is so amazing ! ! !

Hey @Pistol I thought about that! I will get a lot of tests when I can move out of my country, hopefully in early 2022. Tests that I haven't got in a while like iron levels. And more! Yes... it's so high in here, not the highest in South America, but still pretty high, you certainly can feel it, even elite athletes feel altitude sickness when they come in here, imagine someone with dysautonomia! I feel like a super hero for being all my life here. Elite athletes tend to take viagra. Andean indigenous people tend to drink coca infusions, or they chew the coca leaves. If they don't have it that easy to adapt I can't expect much for me. I take none of them tho. I prefer antioxidants from raisins for example, or dark chocolate among others. I've read before that our red blood cells get bigger so they can carry more oxygen, it's an adaptation (most andean people have this kind of blood). But if one has dysautonomia, the body has a bit of a problem adapting to most environments... It's exhausting on top of everything. The only time I went to a non high altitude country, I had the best year of my life when it comes to health, I was better in every way. Hopefully I'll move there completely next year (only downside is that is going to be the first summer ever in my life). Wow. That thing about freezing and yawing when your blood vessels constrict? that's literally me, I even get a bit purple, but ever since I could gain some weight (i was on the malnourished side), it helped, along with sunny days we are having here. And perhaps breathing exercising, good breathing always makes me feel warm in a very comfy way. Well, that's pretty much me as well lol!, I do pretty much everything you do when it comes to meals, I kinda even feel that if I eat a large meal I not only feel crappy but I also get the feeling I'm not digesting any of that meal. The only thing is that I like spice, specially if it is the kind that gives you runny nose or warm mouth? they are great for the cold nights in here, it is always very cold in the night. The more I read from more patients, the more I get we are so different yet so similar. So weird.

@CallieAndToby22LOL THAT'S SO PRETTY

In my country we don't have seasons, these pictures sure look magical! Merry Christmas everyone!!!

Hello everyone! I was just wondering if you guys also happen to have mental issues with this whole pandemic deal. Sometimes I have dysautonomia symptoms but because of soooo much media/information saturation, my mind is instantly in a state of 'this might be COVID'. It is driving me crazy, now that there is so much misinformation and information about how a variant can get through vaccine protection and all that. Booster talk doesn't really help. I constantly check my temperature and spo2 and they're not only ok, but great. And it makes me feel bad for being so fearful, and stuck in this stress state. Sometimes I feel that this is just my mind channeling the sudden adrenaline one might get when nervous and with dysautonomia, because it is like I cannot control it, but, after a few minutes, I am mostly calm. If you guys can share ways on how to deal with this? it would be great. Or if you don't suffer from this anxious state, please share why you are not living in fear.

I drink pedialyte which has sucralose and acesulfame potassium. I've read that in certain countries they got pedialyte 'natural', it doesn't have any sweeteners or flavors (tastes like sea water), worth checking that one out.

Yes, I also have this fluctuation thing. What I can share is that I bought an oximeter 2 months ago, and my spo2 was really low, 90 - 92 sometimes, and my 'normal' was about 92 - 94 (94 was the highest tbh, more on the unusual side). It was 90 - 92 when: going to the bathroom (pooping), sudden changes of position, or, being too much time in a position. or waking up, or before sleeping, after a bath, it was sometimes at random to be honest, but these were the most common moments. Lately I had this 'grandma idea', of eating beef liver... 12 hours later my saturation was 97-98. The highest I've ever seen in my life (in the last 10 years i've been to emergency a lot, and their oximeter was always below 94), I asked my doctors a few times if it was normal to have such a low spo2 but they said it was 'expected' due to my dysautonomia. But they never did anything about it. They said that it is a problem if the reason was an obstructive pulmonary disease for example, and I kinda agree, like, saturation that fluctuates with yawning, sleeping or body positioning, or simply a bad day/night, is tricky. But, as of now, a punch of iron seems to have helped a lot. If I am yawning a lot or just feeling out of breath, the lowest is 93, but after a very few deep breaths (or enough good yawing) it goes up to 95 very fast, I'm on a normal of 95-97 right now, and I'm feeling great. But I suppose I will have to wait months to see how my body responds to higher spo2/heme iron. (btw I also live at 8700+ feet above sea level, so it doesn't really surprises me my spo2 is not that high). So I don't know, the last 6 years I've been managing dysautonomia with nutrition mostly, out of coincidence tbh. I found out that eating this thing or stopping eating that other thing, improved my health. The root of our symptoms can vary so much from person to person... Also I used to have sleep paralysis pretty much every night for at least 2 years. And among other things, I find deep breathing before sleeping to be a huge tool to avoid any sleep disturbance. I encourage you and everyone else with this sense of short breath, or this sense of not having an optimal breathing process, to try deep breathing meditation. The more you do it the more your body kinda 'learns' or 'tries' to mimic optimal breathing. A good way to start your breathing process (lets say after waking up abruptly) is too exhale and then inhale. First to get rid of waste, then bring in new air, you'd be surprised how much waste air you are/were already holding in.

Lmao, I was about to say 'probably not related to dysautonomia' but then I saw that more people had this issue 😳 This topic was made before pandemic, I am sure it can create distress to us feeling stuffy or runny nose, and/or breath discomfort. I bought an oximeter a while ago... it helps with anxiety more than anything else lol (i had the common cold a few weeks ago, but made me very nervous, didn't even had fever) So anyway. I would advice using a vacuum or something like that, to clean your bedroom. Change your sheets often, and all that, if you get these symptoms, when in bed, or after bed time... chances are you got mites or anything like that, that can trigger allergy symptoms. Even dust. This last week I was so nervous of having COVID-19, but noticed my symptoms were only during AM hours, after being in bed. I got some help to do the cleaning, and it helped A LOT. I also fail to bath daily because showering can sometimes be too exhaustive, but bathing also helped...

I've heard recently that is possible that adverse effects, such as myocarditis, blood clotting, and such. Could be related to how the injection is given. When giving an intramuscular injection, there is a small chance, the needle hits a vain, this injecting the vaccine straight into your blood. Which is prohibited in most COVID-19 vaccines guidelines. This could be avoided, by 'aspirating' the syringe. If the needle didn't hit a blood vessel, no blood will be seen in the syringe, making it safe to proceed with the shot. Hopefully there is more data available in the near future. Few references: https://academic.oup.com/cid/advance-article/doi/10.1093/cid/ciab707/6353927 https://www.youtube.com/watch?v=nBaIRm4610o

Wow... it's so great when you find people who had the same issues... specially if they also got told it was psychological 😡 I find interesting that you have problems with non-carbonated fluids. Because on the contrary I have problems with carbonated fluids, they kinda, fill my stomach with gas, it feels like I can't burp (sorry if too much info), I tend to feel bloated, as if I had take a large meal, and well, related POTS/Dysautonomia symptoms arise. Ever since I was a kid I have difficulty to burp and it feels bad when it can't come out. Now, it sometimes happens, it sometimes it doesn't, I would say it improved as I enter my adulthood. But overall I avoid fizzy/carbonated drinks, because most of them are sugar-sodas, but maybe someday I'll tray carbonated water. If my stomach is feeling really bad and I need hydration I can only get drinks with lots minerals/electrolytes. It's been a while since I had vomiting thank god... I wish I could get regular IVs 🥺 I'm having a hard time finding a cardiologist (any) because my health care sucks/or they're suddenly busy, but once I find another one, I will try to convince him IVs are good for us. Only a while ago I find out IVs can be a treatment/therapy. I knew I felt different (for good) every time they gave me one! I had that hunch.

Horizontal activity is great for us, there is no need to do hard exercise at all! If you can't get help from your cardiologist and you don't have any heart problem to be cautious of, DysautonomiaInternational has an exercise program on their website that is very gentle. Lowering carbs help. Eat veggies and protein 😊

Plain water sometimes feels good, but overall I just avoid drinking plain water (even though I filter it). I still use my filtered water to blend fruits, and cook. Or make oatmeal, tea/infusions, etc. I recommend everyone to get a water filter! Now The most optimal way I have to drink and make sure I hydrate myself is to take a sip of whatever I'm drinking every 5 minutes, just a sip, no matter how thirsty I am I try not to 'chug' that thing. It is a bit a test of patience and going against our thirst senses sometimes. And unless my drink is less than 500ml, I tend to use a straw, to prevent me from 'chugging' big drinks 'accidentally'. I also sip pedialyte 60 every now and then during the day (you can drink anything similar) just a sip or two every few hours. Unless you have a reason not to eat a banana daily, I would recommend doing it, potassium is great for muscle cramps, and many other things. IME potassium should be recommended for us just like sodium, along with magnesium and well, that's a different topic, but minerals in general. I have an anecdote about why I usually sip my drinks: When I was a child I used to have days where I had lots of vomiting out of nowhere. My mom would try to hydrate myself with water, or sugarless juices, even pedialyte like drinks, but I would vomit them right away, this putting me in a state of dangerous dehydration. That day (I was like 8 years old) in yet another visit to emergency due to heavy dehydration my pediatric had an odd change of mind, he didn't gave me my usual IV, but made me drink about 1L of lets say, unlabeled hospital pedialyte, it tasted like h***! like some dirty sea water, even the doc described it that way, and made a legit disgust face, and apologized it had no fruity flavor, or color. He asked my mom very firmly to make sure, I sip that thing every 5 minutes and rest. I sipped once, and felt nausea, but not vomits, after a few more sips I was simply disgusted by it's taste and I was also bored because I didn't bring a toy or anything to play with (no TV in the room!), I was in a really bad mood, I was really mad at him, and even at my mom, but after several minutes (more than an hour), most of my dehydration symptoms were gone I was much more better, but I was really thirsty, that thing tasted horrible but I wanted to 'chug' it down, mom told me not to, but I still went on and had more than a sip of it. Nausea came back. So I kept on sipping it. And fell asleep. I recovered fully that same day. Many years later got diagnosed with pots, and now I use the same technique that kind man gave me not sure if intentionally.