1. Being in the heat/sun 2. Exercise/physical activities 3. Lighting 4. Noises 5. Large crowds 6. Standing for long periods of time 7. How waters (showers, baths, tubs) that drop your BP lower 8. Stress (keep in mind how stressful you are) 9. Caffeine (skyrocket your heart rate) and Alcohol 10. Climbing stairs
Meeee toooo! I put protein powder in my oatmeal three to four times a week. I also carry protein bars now for about 10 years. Just diagnosed Dysautonomia no POTS and this is unbelievable because it covers all the symptoms from neuropathy to weakness to well so much...
One of my worst triggers for an episode is being rushed. Like if I was sleeping and suddenly woken up and had to get ready in less than 5 minutes. I almost always wioo end up very emotional, very symptomatic, and quite ready to strangle whoever thought that was a good idea if it wasnt for an emergency
We have heard that many times from people with various types of dysautonomia. It is easy to understand when you think about how rushing can cause changes in BP, HR, and circulation in people without dysautonomia. When you feel yourself rushing, try and remember to slow down, take a few cleansing breaths and wait until you feel ready to move. Standing and walking before you are ready can lead to syncope and falls. Thanks for sharing your experience.
I have (diagnosed) POTS/dysautonomia, and I worked up my exercise very slowly over time with yoga then walking then running and now running 5-10K and playing hockey a few times a week, and I noticed after playing hockey, I can shower and then comfortably stand without compression garments to brush my teeth 😮 Exercise truly helps so much!! Doing it in a game or social environment (like hockey or a run club) can help motivate you despite POTS symptoms!
Thank you for sharing. Congratulations on your wonderful progress! Including movement, every day is important as part of your treatment. For people who can not exercise in the classic sense, it is strongly encouraged to include simple movements and stretches into a daily routine.
Totally agree on the exercise, mine is a weirder realization. It took 12 years to understand fully what is wrong with me but at the beginning, my incredible Dr who was figuring this out with me said one thing I hear in my head every day. “Even if you feel like you are dying, get up and walk anyway.” Well, for two years I was mostly in bed but kept trying. High dose Vit D and sublingual B complex as well as a few other things helped me turn the corner, but it was the fact that I had several horses who had to be fed no matter how badly I wanted to stay in bed that saved my life because by the time I walked to the barn, did the feeding and other things I would start to feel better. Bit by bit I got stronger and fitter and stayed out of bed longer. 12 years later I have it “mostly” under control, can do a little jogging and walk briskly at least 3 miles a day. Once in a while I overdo it and require a rest day. I still have horses but am switching over to training dogs which still requires lots of moving but not as much labor. Exercise definitely improved the quality of my life. When I dreaded getting up and doing it and wished I could stay in bed…I did it anyway and I believe it saved me.
I have Dysautonomia and i found that physical therapy has helped me A LOT to where my symptoms decrease a significant amount. Weight training is awesome for Dysautonomia because you can sit while you do the exercises. Cardio for us is a no no!
You don't mention some of the other symptoms. Chronique debilitating fatigue, shortness of breath, dizziness, brain fog and crazy heart rhythms. Stairs, yes. for sure and often depression
This video is about triggers, not symptoms. But if you click on the Video tab you will see all our videos. There are videos focused on brain fog, GI issues, temperature regulation, fatigue, syncope, blood pressure, etc. You can watch more info about specific symptoms there. Thank you for watching.
I've been trying to figure out what wrong with me for years. Today at the Dr, a new doctor, and mentioned this. I feel like I see the light at the end of the tunnel, finally. So much is making sense finally.
So glad the information is helpful to you. If you haven't already, visit our website www.dinet.org & under "Information Resources" you can learn more about different types of dysautonomia. We also have an anonymous patient forum where you can chat online with other people living with dysautonomia. Best of luck in your search for a diagnosis.
Anything less than excellent hydration is a trigger for me, if I slack off more than 1 or 2 days. Thank you for the lighting validation! I knew it bothered me but I didn’t know it bothered anyone else!
In my case, that was one of My first symptoms and so confusing foto doctores that it took 13 years for doctors to finally label My symptoms. Light sensitivity was so intense that I even had to wear sunglasses all day ando even to go to the bathroom at night or when driving. If I don't I would get vertigo in a matter of seconds.
I actually also find the cold somewhat triggering... I usually seem to suffer worse in summer and winter, especially when outside.... Sucks because I’ve always absolutely loved summer and have always been an outdoors person😕....
It depends on what type of Dysautonomia you have on what your symptoms are. Although there can be a lot of people with the same symptoms. Some people can workout with Dysautonomia and it can make them feel better. For example Levine Protocol. Thanks for bringing awareness!😊
Thank you. Just discovered stairs have me out of breath to the point of almost panic. This is a new symptom that I’ll ask my rheumatologist about. I live on the 2nd floor with 15 steps to climb.
Shortness of breath is a common symptom of dysautonomia, however, increased shortness of breath is not. So if you are noticing that your shortness of breath is worse, please most definitely consult your rheumatologist. You may want to ask for a referral to a pulmonologist who will be able to do non-invasive testing to track your breathing over time as well. You want to be sure that shortness of breath is not automatically chalked off to dysautonomia without the proper testing. Especially if it is new symptom or is worsening. Best of luck.
My Dr is suggesting there is a relationship between my Thoractic Outlet Syndrome, my bad neck, and my POTS. My HRV varies a lot depending upon the position of my arms. So holding a steering wheel and driving long distances can make my symptoms a lot worse.
I have the same problem with driving long distances! Using the steering wheel does not do well with my poor circulation. The same goes for when I sit at a desk and use a computer mouse.
Did you have the Thoracic Outlet Syndrome surgery? I've had both sides operated on. I've also had 4 cervical spinal surgeries as well and they say this had caused my condition.
Yes, there are many GI issues that people with dysautonomia live with, including nausea and diarrhea. Constipation and a delay in emptying are also common symptoms. These symptoms are usually treated separately from the other symptoms of dysautonomia (dizziness, syncope, etc.)
I find for exercise, if I can keep my core in place (like leg lifts, a recumbent bike, or a rowing machine) I can last longer and it does improve my symptoms
Definitely the heat. I live in FL and its unbearable at times. Light form screens too. It can make me feel sick after a while. I always have to use blue light filters or keep my brightness down.
Wow this helps me soo so much .. I just got diagnosed after a year of being so so sick My b12 was very low and I been on shots but it wasn’t all getting better cus the nervous system long term damage it caused caused me this condition now as well as neuropathy in feet And the things in this video I say all the time .. lights bug me.. I wear the rose tinted glasses if in doctors or food stores when needed and when don’t I just put on my head like sunglasses ppl do I get so many of the symptoms listened actually I checked again I get every single one you listed.. it’s crazy a year and a half ago I was fine now my life turned around drastically
Omg. The stairs! And I have a 3 story house. I have to conserve energy and always carry something up or down with me or get my husband to go up or down to get an item I forgot if he's home.
Hi, is it possible to have video on how can people with dysautonomia who are on SSRIs, Beta blockers lose weight as heavy exercising is not an option and there could be eating restrictions too (as many could have co-morbid IBS as well)?
You just described me. I haven't been diagnosed but do have Sjogren's autoimmune disease. I'm going to be seeing a rheumatologist soon and will ask about this. Thanks for the information!
We are so glad that you found the information helpful. We are also glad to hear that you have an appointment soon. Dysautonomia is a common comorbidity to Sjogrens. Best of luck with your diagnosis and treatment plan.
Anaphylaxis from physical exertion. Stairs are hard for me. Started improving when I started eating salt. My sodium, chloride and potassium were all low. I also follow the forum at the Mayo clinic. Stage three kiddney failure complicates it some but improving with salt. Lost 30 lbs which Helps too. Compression sleeves on both knees and I can work some now. I don't even carry my EPIPEN now. Heat did make it worse too. What a battle. Consider Zero point energy!
Glad to hear some of your symptoms are improving. Heat and exertion are two of the most common triggers for most of us. It is a battle for sure. Hang in there.
Heat or cold intolerance, also raising my hands above my head (washing or doing my hair is a trigger, But one of the worse triggers for me is THE RAIN!!!! It makes my legs heavy,achy and tired.😢
Thanks for sharing. I hadn't heard rain as a trigger before. It is just wild how many strange things trigger us. I have trouble with anything overhead as well - washing my hair, reaching for something....all triggers. Thanks for adding a new one.
Yes reaching overhead like hanging out laundry, or reaching into a cabinet. Also bending over to reach into the refrigerator. I haven't heard of this from anyone else until now. My doctors, even the dysautonomia specialist, don't know this triggers symptoms, but it definitely does.
I have to wear sandals year round. Winter time, I wear socks and slide sandals... Most people have their heaters on and my feet are the quickest way to cool down; if I am in a store (I know this isn't sanitary but the start of an episode is very scary personally, so, I can care less for as long as the alternative, along with the prolonged feeling of fog and almost like I have a word on the tip of my tongue all the time, is avoided) I can take my sandals off and take in the cold temperature while walking. I started to experience incontinence and the loss of feeling the need to go #2 which leads to constipation quite often... Plus. I choke on pills/food/saliva randomly or when can't make myself swallow down what is in queue...an anxiety relief is to not eat things that are tough like steak... to name only some of what are my toughest situations that I can never get used to.
I wonder if overstimulation plays a part, large crowds, fluorescents, and noises are all overstimulating even if they dont necessarily cause anxiety for you. Its just a nervous system thing maybe it overloads what little function we do have left lol.
It's possible that is a trigger for some people. We have heard from many people that large crowds and especially fluorescent lighting seems to be triggering. There is still so much that science doesn't full understand about the human body in general but especially the various nervous systems and the effect of outside stimulants. Thanks for sharing your thoughts.
If you haven't yet been diagnosed, you should mention all of your symptoms to your doctor. Sometimes people disregard symptoms that don't seem to "fit" but in the case of dysautonomia, it is common for many random symptoms to present a full picture. Best of luck
@@DysautonomiaInformationNetwork Highly appreciate your help but doctors in Germany don't give a shit about my symptoms. They look at the labs and dismiss me. I've been through this every now and then for 16 years and gave up.
I can listen to loud music but not if I need to listen to anything else. Background noise is distorting when trying to converse. Crowded environments through me off balance so I use a cane or walker in crowds.
Haha strong dude in 40s with strong body stairs though? I go all wobbly! Just diagnosed last week so thanks! learning is wonderful! I thought it was normal to pass out when your straining or bend over and then stand up. My brain trained me to stop squatting and it's very hard to overcome the resistance and moderately keep my mobility! So odd for a drummer who can run and walk great! Oh the faintheadedness, it ruined my relationship with my muscles and I'm fighting to regain that! yaya yes I would add that my cardiologist said once I get control of it with salt intake increase I will probably life forever because of blood pressure so low. HAHAha
What you describe is so typical of what we all go through. There is a period of thinking "does this happen to everyone?" or "I must not have eaten enough" or "I must have been doing too much" and always the hope that it will all just go away.... I'm sorry your comment was lost in our messages but I do hope that by now you are seeing some help from the increase salt intake. Realistically, the salt does help but it usually takes some retraining of how you move through the world to keep yourself from feeling faint. Let us know how you are doing. Best wishes.
I was gifted ballet student ! Turns on right , not much dizziness Turns to left , doing multiple sets of turns , oh my goodness …,.., I would be spinning , the room was spinning , sweating profusely but did I faint ? No , but I think I willed myself not to ..,. I was an elite littlr prodigy , I could not be weak and say ‘ I need to sit down , I am spinning , I need salt I need ice packs on my neck ! I returned to dance age 55 and dancing so well , so strong but turns to left corner ??? I would hang my head down , grab my table salt , jelly bean ( glucose ) electrolyte drink ……my sweating has always been abnormal
Does anybody else got dysautonomia after stopping anti depressants? One of my worst triggers is when I turn my head too far, like when driving a car backwards
Just diagnosed 3 weeks ago already had Atrial Fibrillation & High Blood Pressure Now these go up & Down all day ! Going up Stairs is a Real Struggle for me Fatigue also My Balance is Real bad- ( Numb feet heavy legs think that’s as I am due 2nd Spinal Fusion) also Frequent urgent urination day and Night and slight change in eye sight and Brain Fog 🙄🤔
Eating the dinner meal sets it off for the evening and just rolling over it bed, any different movements . During the night trying to sleep is the worse
When you say "dysautonomia" do you only mean "POTS"? There are many different forms of dysautonomia, I have NCS / Vasovagal Syncope and i have all these symptoms but not necessarly the increase in heart rate and blood pressure more like a drop. Thank you for the info!
Thank you for the question. When we use the term "dysautonomia" we do mean the umbrella term referring to the disorders related to the dysfunction of the autonomic nervous system. When we are referring only to POTS we use that term. For the purpose of this video, the symptom triggers are inclusive of the many forms of dysautonomia and are not intended to mean that all triggers are related to all forms. The video is an overview and not specific to any one form. I hope that clarifies that for you. If you have further questions, please feel free to email webmaster@dinet.org Thank you!
I have Vasovagal Syncope,ive been dealing with this since 2015 and i finally had a doctor tell me what it is and whats going on with me. My triggers are heat,stress,lights,crowds,traffic and inused to be able to run 5 miles a day now i can barely walk 1 mile w/o feeling super dizzy. And just like yours my heart rate drops. When i tell ive tried everything i tried everything,now im currently on pristiq because of this drove me to depression so this is no joke. Do you have any advice or tips when a episode occurs?
@@kenzoblytheproducertv4934 I deal with those same things, and im still pretty new to it, all the doctor told me was to drink lots of water and salt, so they werent very helpful, I am still trying to figure out more about it.
Before I could fly up stairs/hills. I ran all throughout HS, the Army, and after. Now I won’t do a couple flights of stairs without taking a break, but I am terrified of elevators 😂.
I am so glad to know that I am not the only one who’s terrified of elevators. Most people when they find out that I do not ride an elevator because my fear is this intense they judge me and don’t understand. I have been stuck in multiple different elevators throughout my life. This last time I was stuck in an elevator it just triggered me so much I said nope I am done I just can’t go through being trapped in a very confined hot enclosure and still be able to function properly without panicking. So to me having an intense elevator phobia makes perfect sense in my mind. It’s just nice to see when others share similar fears and phobias to know that we are not so alone in are ways 🥰. One thing I learned about my POTS this year that has made my symptoms much worse is both getting Covid this year. It re messed up my whole central nervous system from having Covid and it also has left me with long haul Covid symptoms that I still am struggling with. Where as before getting Covid my POTS symptoms where still there but not nearly as intense and not as frequent unless I was exposed to heat, prolonged exercise, or in warm water or stood up to quickly. Before getting Covid I would pass out a couple to a few times in a whole year. Now after having Covid my symptoms with POTS are much more intense and I feel like I am going to pass out several times a week. I have already passed out 4 times just in 2 months. Another thing I have recently learned that makes my POTS so much worse is Flying. I was on an air plane a couple of months ago as well and NEVER AGAIN. I have flown before a long long time ago before I had POTS and never had a problem or any symptoms from flying. I am still traumatized from what happened to my body during are flight we took not to long ago with having POTS. I had no idea that the change in altitude and air pressure would make my POTS symptoms so much worse or I never would have flown. As soon as the air plane starting taking off I was fine. I had really good ear plugs in that I had bought because this was the things I had research and knew to be prepared for when flying so my ears wouldn’t hurt during the flight. It turns out that my ears during this flight where the only thing that didn’t end up effecting me at all. I guess I did end up picking out some great quality airplane earplugs to help reduce the chances of your ears popping because they definitely helped my ears throughout are 4.5 hour flight. As soon as the airplane kept ascending though I felt it in my chest and my head started getting very light headed. I immediately started feeling dizzy like I was going to pass out. My eyes where getting spotty and blurry. I could feel my blood pressure dropping and my chest pounding faster and faster as the airplane was going up. I kept thinking to myself o my gosh I am having a major POTS attack. I just wanted the air plane to stop going up and up 🤣 but obviously that wasn’t gonna not happen. Finally after reaching maximum altitude I was thinking okay I should be alright now…..wrong. My chest kept pounding to where I literally thought I was having a heart attack. I was having a heard time breathing because you don’t get as much oxygen when being up this high in altitude as it is even for a very healthy person who doesn’t have POTS it can effect their oxygen levels some. I blacked out at least twice during the flight. I just kept thinking to myself are we almost there yet are we almost to where we need to go to the next airport. Every drop in altitude the plane made while up in the air and every incline in altitude my whole entire body could feel internally and made me so physically and mentally sick. Every slight change the plane made I could feel so intensely and was able to notice. It literally felt like being strapped to a tilt table test that was 4.5 hours long. I was in my own bodys worst nightmare and on top of this I didn’t even tell the people I was traveling with. I did not want to upset anyone or make a big scene while on the airplane. So I would just ask my travel buddy's “are we there yet?” “how much longer till we are there?” 😆. I will say that when we where descending and getting ready to land I was standing up since the flight attendant was showing me some cool things during a show and tell tour for me since I am on the autism spectrum and had not flown in 15 years. I noticed when I was standing up and the plane was getting lower and lower it actually did not affect my body with my POTs nearly as much as the take off and ascending upwards while getting higher and higher in altitude that was so much worse on my body and POTs then the landing seemed to be going down in altitude and I have know idea honestly why that was. When we finally landed I thought my vitals would go back to base line but it didn’t. I still was having such intense sharp chest pains and my blood pressure was still effecting me and I was still having a hard time with my oxygen levels that I ended up needing to get checked out by paramedics at the air port. I told them I had POTS, EDS and autism when they asked what my medical conditions where. They looked at me like I was crazy when I told them I felt sick because having an invisible illness is so hard and a lot of people even in the medical field still do not take us seriously because we might “look alright” on the outside. They did my vitals but at this point it had been over an hour after we landed and we where waiting for another flight since we where supposed to fly somewhere else since it was not a non stop flight we had to transfer. My vitals where a little off but nothing major by this point and I kinda figured since it had been over an hour later that they wouldn’t be able to see anything significantly off at this point. They probably thought I was a hypochondriac or something 🤣. I knew what my body felt like inside and out during that flight though and how it affected me and I know I am not “faking”. So that’s all that matters in the end. If I was faking or a hypochondriac I would have made a big scene and production DURING the flight 🤣 and I didn’t. I kept my mouth shut and didn’t want to make a big fuss. I didn’t want any emergency landing protocols going on so I just sat there miserable alone emotionally and trying to hide and play the whole thing off in a very covert manner because that’s usually how I am with my invisible illnesses and don’t want to make any big scene. I will say though after this whole flying experience has happened I will never ever fly again. I am honestly still traumatized from what it did to my body. It felt like being trapped on a tilt table for over 4 hours and having no way off or out. When you have POTS flare ups and symptoms on land you have emergency personnel who can help you quickly and you can go to the doctor or hospital if need be in a mater of minutes. But when you are on an air plane and start having medical symptoms and complications from conditions you already have and there is no hospital or doctors office or any emt or nurse right there with you it’s very hard and scary. You are there seriously suffering alone with your body’s reactions form having an imbalanced central nervous system. I really wish I knew that flying was going to affect me this way ahead of time but sometimes you just honestly don’t even know until after the fact. Everyone’s POTS is different and how certain things trigger there symptoms and flare ups. Some people might be able to fly with POTS but others are not.
@@magickingdom3361 I’m flat to know that you made it out of that airplane 🙂. After the second time getting really sick for what seemed like no reason I suddenly was terrified of getting in an airplane. I flew many times before, and considered it fun. For some reason unknown the simplest things were causing anxiety. I was waking up in cold sweats thinking about being on my next flight😅. To make it worse I saw someone on the news freaking out aboard a flight yelling “I gotta get outta here”😂Thank god that all passed, and I’ve been airborne several times since. About a year ago I became ill again, but thankfully after doing research and fighting for it I was given the Tilt table test. I found out I’m not crazy after all😃😃. I’m better now but definitely not the same as before. Thank you for sharing your experience. The only thing that worried me about flying was claustrophobia, but thanks to you I will be better prepared for my next flight🙏🏾
I hate when people assume I'm being overdramatic on elevators. I reach out for someone's hand if there's no handrail. I never knew why I was SO sensitive over elevators. Regarding flights, I flew 3 times and cried every time holding my head like it would surely explode. I'll drive anywhere I can but I'll NEVER fly again in my life! NOTHING is worth that!!!
People with autonomic dysfunction can have baroreflex abnormalities causing fluctuations in BP. Depending on the type of dysautonomia, it can cause severe and dangerously high blood pressure. That said, most people with the more common types of dysautonomia experience drops in BP with changes in position.
I have dyspnea post Covid which is often triggered by talking especially when I have to explain things etc… I wonder if this is dysautonomia? All tests are negative and I’m waiting to see a specialist.
I'm sorry you are still struggling since COVID. Dyspnea on its own is not dysautonomia. It is fairly common for people healing from COVID to have some respiratory issues. You are taking the right step in seeing a specialist. Many disorders can cause dyspnea. You didn't say what type of specialist you are seeing, but hopefully, you will be seen by a pulmonologist to find out why you are having difficulty breathing. We wish you the best of luck.
Yes it most certainly can mess with circulation causing things like blood pooling, cyanosis, and other disturbances. This video is about triggers for symptoms, can you share anything that triggers your symptoms?
Doesnt anyone get more triggered by smells? I was going this dish for dinner and got this Asian BBQ marinate sauce. I was so excited. Thenb I opened rhe bottle. It didnt smell gross, but it made so nauseated and made my other symptoms flare for a while. Before POTS, I would have been fine with rhe smell
Smell has a very strong, but individual effect on people. So although it isn't generally reported as a trigger, nausea is. So any smell could hit you in a way that makes you feel nausea even if you didn't in the past.
It can be fairly common for people to experience dizziness after surgery along with fatigue. Even people who do not have any form of dysautonomia can have symptoms of orthostatic hypotension after surgery or illness. That's why doctors won't make a diagnosis until symptoms have been consistent for more than 6 months. That being said, I hope you have discussed the dizziness and other symptoms with your surgeon during follow up visits or with your PCP. It is not uncommon to need a supplement or even nutritional changes after surgery to help your body adjust. Best of luck with your recovery.
My 19 year old daughter is being worked up by her doctor and specialists for possible POTS. I just learned of Dysautonomia. How do you guys live like this? She keeps fainting, or feeling faint at work. She's only 19 and always tired... Is she going to get better? How can one work and drive in constant fear of fainting?
I'm really sorry to hear that this is happening to her and it is very frightening in the beginning. Knowledge and patience are the most important things at the beginning of this journey. First, there is no cure for POTS/Dysautonomia, however, this is a disorder that is very different from person to person. Depending on what brought on her symptoms; virus, surgery, stress, etc., or another underlying illness; CFS, MS, diabetes, etc., the treatments are very different. Also, you DO get better. For some, symptoms resolve over time, for most people though symptoms come & go, with varying levels of severity. But you learn to live with it as you discover the things that help the symptoms. For example, dehydration is of paramount importance, along with electrolyte levels. There are many, many ways to help yourself as well as medications that may help. Some people are not able to work, at least until getting their symptoms under control, some others work from home or unfortunately are unable to work altogether But drivjng is not an issue as it is related to dysautonomia. The cause of fainting (syncope) or presyncope with dysautnomia happens with a change in body position (sitting to standing, laying down to siting up) it does not happen when sitting driving, unless there is another underlying illness that can cause that. Please start at this link from our site for more information about the disorder and how to manage symptoms. www.dinet.org/info/pots/ The more that you can learn about this the better off your daughter will be and the sooner she will start to learn what works for her. Best of luck.
I hope the info helps. For more detailed information about dysautonomia, check out our website and forum. You can also print out materials to bring to your next doctor visit. It may be helpful. www.dinet.org
If you explore our channel - ua-cam.com/channels/UZMfU6I2622J6Fv50oFaiQ.html and our website, www.dinet.org, there are many videos and articles discussing treatments, medications and self-help.
I curious how old you are my son 18 and he has all the symptoms. They say once he stops growing his heart will catch up but like I said, he’s 18 now. Just wondering what kind of life and job he will be able to do. He has a high IQ, but with the brain fog, he is not quick. He sleeps most of the day.
If your son has been diagnosed with POTS or another form of dysautonomia, there is no such thing as his heart "catching up." Most people with dysautonomia work hard to manage their symptoms and, over time, learn to live happy, productive lives. The fatigue is not only unusual with dysautonomia, but it is also common with CFS and other disorders. So the first step is to bring these symptoms to a doctor who will look at all his symptoms and not dismiss them. Once he is diagnosed, there is a lot that can be done to improve his health, manage his symptoms and improve his energy level. Best of luck.
@KathyElam-xi8bf GI dysfunction in its many forms are very difficult symptoms to live with. Can you share what triggers make your peristalsis better or worse?
There is no cure for dysautonomia. There are people who report long periods of remission or a resolve of symptoms over time. However, most people with dysautonomia report periods of mild symptoms along with times when a "flare" of symptoms is triggered.
I have nOH..no cure and nobody ever talks about it either. I only hear about POTS and it's SUPER FRUSTRATING..you can never find any info about nOH unless it's connected to MSA or Parkinsons..God forbid that comes my way 🥺
These are absolutely symptoms of dysautonomia, all very well documented. That said, there are also many other disorders with overlapping symptoms. ,Also, the majority of people with dysautonomia have comorbidities. But your comment is wildly inaccurate & false.
Just diagnosed 3 weeks ago already had Atrial Fibrillation & High Blood Pressure Now these go up & Down all day ! Going up Stairs is a Real Struggle for me Fatigue also My Balance is Real bad- ( Numb feet heavy legs think that’s as I am due 2nd Spinal Fusion) also Frequent urgent urination day and Night and slight change in eye sight and Brain Fog 🙄🤔
Stairs are a terrible challenge for most people with dysautonomia and if you have spine issues as well, I'm sure stairs are not an easy thing for you at all. Your symptoms are very common for people with dysautonomia and it is fairly common to develop issues with the autonomic system after having spinal fusions and surgeries, as well as injury. Hopefully after your next surgery some of these symptoms will improve and at the very least, your doctors will be able to focus on treatment of your dysautonomia dn AFib symptoms. Best of luck with your surgery.
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1. Being in the heat/sun
2. Exercise/physical activities
3. Lighting
4. Noises
5. Large crowds
6. Standing for long periods of time
7. How waters (showers, baths, tubs) that drop your BP lower
8. Stress (keep in mind how stressful you are)
9. Caffeine (skyrocket your heart rate) and Alcohol
10. Climbing stairs
@AmericasMom LoveEveryoneNoExceptions similar here! The body is so ahead of the learning curve it's amazing 👏
Mine came as a result of nerve damage after a surgery and my doctor told me to drink caffeine bc of the postural orthostatic hypotension
Unless you are also adhd, coffee helps
Maybe just me, but one of my worst triggers is low blood sugar. I have to take protein bars with me everywhere I go.
Yes!
Yassss LORD yasssss 😭. Not conducive trying to work on the ambulance
Literally my life. Although have you ever tested your blood sugar while you're feeling bad? I have not and I'm curious if it's really that
Meeee toooo! I put protein powder in my oatmeal three to four times a week. I also carry protein bars now for about 10 years. Just diagnosed Dysautonomia no POTS and this is unbelievable because it covers all the symptoms from neuropathy to weakness to well so much...
Same
One of my worst triggers for an episode is being rushed. Like if I was sleeping and suddenly woken up and had to get ready in less than 5 minutes. I almost always wioo end up very emotional, very symptomatic, and quite ready to strangle whoever thought that was a good idea if it wasnt for an emergency
We have heard that many times from people with various types of dysautonomia. It is easy to understand when you think about how rushing can cause changes in BP, HR, and circulation in people without dysautonomia. When you feel yourself rushing, try and remember to slow down, take a few cleansing breaths and wait until you feel ready to move. Standing and walking before you are ready can lead to syncope and falls. Thanks for sharing your experience.
Never thought about it but I definitely feel this one. Thank you for pointing out. Maybe I can avoid this trigger by planning out 🙏
I have (diagnosed) POTS/dysautonomia, and I worked up my exercise very slowly over time with yoga then walking then running and now running 5-10K and playing hockey a few times a week, and I noticed after playing hockey, I can shower and then comfortably stand without compression garments to brush my teeth 😮 Exercise truly helps so much!! Doing it in a game or social environment (like hockey or a run club) can help motivate you despite POTS symptoms!
Thank you for sharing. Congratulations on your wonderful progress! Including movement, every day is important as part of your treatment. For people who can not exercise in the classic sense, it is strongly encouraged to include simple movements and stretches into a daily routine.
Totally agree on the exercise, mine is a weirder realization. It took 12 years to understand fully what is wrong with me but at the beginning, my incredible Dr who was figuring this out with me said one thing I hear in my head every day. “Even if you feel like you are dying, get up and walk anyway.” Well, for two years I was mostly in bed but kept trying. High dose Vit D and sublingual B complex as well as a few other things helped me turn the corner, but it was the fact that I had several horses who had to be fed no matter how badly I wanted to stay in bed that saved my life because by the time I walked to the barn, did the feeding and other things I would start to feel better. Bit by bit I got stronger and fitter and stayed out of bed longer. 12 years later I have it “mostly” under control, can do a little jogging and walk briskly at least 3 miles a day. Once in a while I overdo it and require a rest day. I still have horses but am switching over to training dogs which still requires lots of moving but not as much labor. Exercise definitely improved the quality of my life. When I dreaded getting up and doing it and wished I could stay in bed…I did it anyway and I believe it saved me.
I have Dysautonomia and i found that physical therapy has helped me A LOT to where my symptoms decrease a significant amount. Weight training is awesome for Dysautonomia because you can sit while you do the exercises. Cardio for us is a no no!
I loved weight training in HS, it was super nice to be able to sit on the machine but still be working out!
I can walk outside but slowly. I cannot do treadmill or elliptical without almost passing out.
You don't mention some of the other symptoms. Chronique debilitating fatigue, shortness of breath, dizziness, brain fog and crazy heart rhythms. Stairs, yes. for sure and often depression
This video is about triggers, not symptoms. But if you click on the Video tab you will see all our videos. There are videos focused on brain fog, GI issues, temperature regulation, fatigue, syncope, blood pressure, etc. You can watch more info about specific symptoms there. Thank you for watching.
I've been trying to figure out what wrong with me for years. Today at the Dr, a new doctor, and mentioned this. I feel like I see the light at the end of the tunnel, finally. So much is making sense finally.
So glad the information is helpful to you. If you haven't already, visit our website www.dinet.org & under "Information Resources" you can learn more about different types of dysautonomia. We also have an anonymous patient forum where you can chat online with other people living with dysautonomia. Best of luck in your search for a diagnosis.
Anything less than excellent hydration is a trigger for me, if I slack off more than 1 or 2 days. Thank you for the lighting validation! I knew it bothered me but I didn’t know it bothered anyone else!
In my case, that was one of My first symptoms and so confusing foto doctores that it took 13 years for doctors to finally label My symptoms. Light sensitivity was so intense that I even had to wear sunglasses all day ando even to go to the bathroom at night or when driving. If I don't I would get vertigo in a matter of seconds.
I actually also find the cold somewhat triggering... I usually seem to suffer worse in summer and winter, especially when outside....
Sucks because I’ve always absolutely loved summer and have always been an outdoors person😕....
Thank you for this list! It validates my triggers!
I am so glad to hear it!
It depends on what type of Dysautonomia you have on what your symptoms are. Although there can be a lot of people with the same symptoms. Some people can workout with Dysautonomia and it can make them feel better. For example Levine Protocol. Thanks for bringing awareness!😊
I’ve never heard of the Levine Protocol. Will check it out, thanks so much. 🫶🏻
Recently diagnosed and finding all your videos incredibly helpful. Thanks for all you do!
Thank you so much Kate. So glad you are finding the videos helpful.
Thank you. Just discovered stairs have me out of breath to the point of almost panic. This is a new symptom that I’ll ask my rheumatologist about. I live on the 2nd floor with 15 steps to climb.
Shortness of breath is a common symptom of dysautonomia, however, increased shortness of breath is not. So if you are noticing that your shortness of breath is worse, please most definitely consult your rheumatologist. You may want to ask for a referral to a pulmonologist who will be able to do non-invasive testing to track your breathing over time as well. You want to be sure that shortness of breath is not automatically chalked off to dysautonomia without the proper testing. Especially if it is new symptom or is worsening. Best of luck.
For me digestion is also an issue
Allithiamine (Vitamin B1) is really helping me.
My Dr is suggesting there is a relationship between my Thoractic Outlet Syndrome, my bad neck, and my POTS. My HRV varies a lot depending upon the position of my arms. So holding a steering wheel and driving long distances can make my symptoms a lot worse.
I have the same problem with driving long distances! Using the steering wheel does not do well with my poor circulation. The same goes for when I sit at a desk and use a computer mouse.
Did you have the Thoracic Outlet Syndrome surgery? I've had both sides operated on. I've also had 4 cervical spinal surgeries as well and they say this had caused my condition.
Does anyone have chronic nausea and or diarrhea with Dysautonomia?
Yes, there are many GI issues that people with dysautonomia live with, including nausea and diarrhea. Constipation and a delay in emptying are also common symptoms. These symptoms are usually treated separately from the other symptoms of dysautonomia (dizziness, syncope, etc.)
I find for exercise, if I can keep my core in place (like leg lifts, a recumbent bike, or a rowing machine) I can last longer and it does improve my symptoms
Core strength is vital. That's great that you have had success with equipment and in managing your symptoms. Best of luck
Definitely the heat. I live in FL and its unbearable at times. Light form screens too. It can make me feel sick after a while. I always have to use blue light filters or keep my brightness down.
I keep my night mode on all the time
For the heat you can use artic cool towel around the neck, cooling vest, neck or waist portable fans.
Same here. In Tampa the thunderstorms startle me beyond belief. I have no idea how to come to terms with it.
Absolutely the #1 for me is heat sensitivity. I just can’t handle it at all. That’s why I enjoy winter / fall
Wow this helps me soo so much .. I just got diagnosed after a year of being so so sick
My b12 was very low and I been on shots but it wasn’t all getting better cus the nervous system long term damage it caused caused me this condition now as well as neuropathy in feet
And the things in this video I say all the time .. lights bug me.. I wear the rose tinted glasses if in doctors or food stores when needed and when don’t I just put on my head like sunglasses ppl do
I get so many of the symptoms listened actually I checked again I get every single one you listed.. it’s crazy a year and a half ago I was fine now my life turned around drastically
Omg. The stairs! And I have a 3 story house. I have to conserve energy and always carry something up or down with me or get my husband to go up or down to get an item I forgot if he's home.
Thank you sooo much!! Going to let my family listen to this❤
Hi, is it possible to have video on how can people with dysautonomia who are on SSRIs, Beta blockers lose weight as heavy exercising is not an option and there could be eating restrictions too (as many could have co-morbid IBS as well)?
You just described me. I haven't been diagnosed but do have Sjogren's autoimmune disease. I'm going to be seeing a rheumatologist soon and will ask about this. Thanks for the information!
We are so glad that you found the information helpful. We are also glad to hear that you have an appointment soon. Dysautonomia is a common comorbidity to Sjogrens. Best of luck with your diagnosis and treatment plan.
Anaphylaxis from physical exertion. Stairs are hard for me. Started improving when I started eating salt. My sodium, chloride and potassium were all low. I also follow the forum at the Mayo clinic. Stage three kiddney failure complicates it some but improving with salt. Lost 30 lbs which Helps too. Compression sleeves on both knees and I can work some now. I don't even carry my EPIPEN now. Heat did make it worse too. What a battle. Consider Zero point energy!
Glad to hear some of your symptoms are improving. Heat and exertion are two of the most common triggers for most of us. It is a battle for sure. Hang in there.
You missed one!
Being alive! #1 trigger!
Heat or cold intolerance, also raising my hands above my head (washing or doing my hair is a trigger, But one of the worse triggers for me is THE RAIN!!!! It makes my legs heavy,achy and tired.😢
Thanks for sharing. I hadn't heard rain as a trigger before. It is just wild how many strange things trigger us. I have trouble with anything overhead as well - washing my hair, reaching for something....all triggers. Thanks for adding a new one.
Yes reaching overhead like hanging out laundry, or reaching into a cabinet. Also bending over to reach into the refrigerator. I haven't heard of this from anyone else until now. My doctors, even the dysautonomia specialist, don't know this triggers symptoms, but it definitely does.
For me, hot beverages really flare me up! I’m assuming because of the temperature regulation issues.
I have to wear sandals year round. Winter time, I wear socks and slide sandals... Most people have their heaters on and my feet are the quickest way to cool down; if I am in a store (I know this isn't sanitary but the start of an episode is very scary personally, so, I can care less for as long as the alternative, along with the prolonged feeling of fog and almost like I have a word on the tip of my tongue all the time, is avoided) I can take my sandals off and take in the cold temperature while walking. I started to experience incontinence and the loss of feeling the need to go #2 which leads to constipation quite often... Plus. I choke on pills/food/saliva randomly or when can't make myself swallow down what is in queue...an anxiety relief is to not eat things that are tough like steak... to name only some of what are my toughest situations that I can never get used to.
Should do a video on healthy eating if you haven’t!
So many wouldn’t have so many problems if they would eat healthier.
I wonder if overstimulation plays a part, large crowds, fluorescents, and noises are all overstimulating even if they dont necessarily cause anxiety for you. Its just a nervous system thing maybe it overloads what little function we do have left lol.
It's possible that is a trigger for some people. We have heard from many people that large crowds and especially fluorescent lighting seems to be triggering. There is still so much that science doesn't full understand about the human body in general but especially the various nervous systems and the effect of outside stimulants. Thanks for sharing your thoughts.
Wow - makes a lot of sense, now it all makes sense! I didn't know this, but I have all of these issues!
Oh wow, I didn't expect all of this perfectly describe my condition.
If you haven't yet been diagnosed, you should mention all of your symptoms to your doctor. Sometimes people disregard symptoms that don't seem to "fit" but in the case of dysautonomia, it is common for many random symptoms to present a full picture. Best of luck
@@DysautonomiaInformationNetwork Highly appreciate your help but doctors in Germany don't give a shit about my symptoms. They look at the labs and dismiss me. I've been through this every now and then for 16 years and gave up.
I can listen to loud music but not if I need to listen to anything else. Background noise is distorting when trying to converse.
Crowded environments through me off balance so I use a cane or walker in crowds.
Haha strong dude in 40s with strong body stairs though? I go all wobbly! Just diagnosed last week so thanks! learning is wonderful! I thought it was normal to pass out when your straining or bend over and then stand up. My brain trained me to stop squatting and it's very hard to overcome the resistance and moderately keep my mobility! So odd for a drummer who can run and walk great! Oh the faintheadedness, it ruined my relationship with my muscles and I'm fighting to regain that! yaya yes I would add that my cardiologist said once I get control of it with salt intake increase I will probably life forever because of blood pressure so low. HAHAha
What you describe is so typical of what we all go through. There is a period of thinking "does this happen to everyone?" or "I must not have eaten enough" or "I must have been doing too much" and always the hope that it will all just go away.... I'm sorry your comment was lost in our messages but I do hope that by now you are seeing some help from the increase salt intake. Realistically, the salt does help but it usually takes some retraining of how you move through the world to keep yourself from feeling faint. Let us know how you are doing. Best wishes.
I’m learning so much from you; thank you 😊
Aw I’m so glad. Thank you watching these and your support! 💙
Yeas you nailed it. Only outlet to go out is to get drunk first but days after a horrible. But sometimes it's worth it.
I was gifted ballet student ! Turns on right , not much dizziness
Turns to left , doing multiple sets of turns , oh my goodness …,.., I would be spinning , the room was spinning , sweating profusely but did I faint ? No , but I think I willed myself not to ..,. I was an elite littlr prodigy , I could not be weak and say ‘ I need to sit down , I am spinning , I need salt I need ice packs on my neck !
I returned to dance age 55 and dancing so well , so strong but turns to left corner ??? I would hang my head down , grab my table salt , jelly bean ( glucose ) electrolyte drink ……my sweating has always been abnormal
Glad to hear you were able to return to dance. But, yes, the dizziness and sweating are common and difficult. Thank you for posting.
Does anybody else got dysautonomia after stopping anti depressants? One of my worst triggers is when I turn my head too far, like when driving a car backwards
Dehydration as well!
Yes! Stairs ugh
Haha glad it’s not just me!
It's like we're all outdoor cats and then we get pots and the pots wants us to be indoor cats lol
😁
Just diagnosed 3 weeks ago already had Atrial Fibrillation & High Blood Pressure Now these go up & Down all day ! Going up Stairs is a Real Struggle for me Fatigue also My Balance is Real bad- ( Numb feet heavy legs think that’s as I am due 2nd Spinal Fusion) also Frequent urgent urination day and Night and slight change in eye sight and Brain Fog 🙄🤔
i cant sit or stand too long
Eating the dinner meal sets it off for the evening and just rolling over it bed, any different movements . During the night trying to sleep is the worse
When you say "dysautonomia" do you only mean "POTS"? There are many different forms of dysautonomia, I have NCS / Vasovagal Syncope and i have all these symptoms but not necessarly the increase in heart rate and blood pressure more like a drop. Thank you for the info!
Thank you for the question. When we use the term "dysautonomia" we do mean the umbrella term referring to the disorders related to the dysfunction of the autonomic nervous system. When we are referring only to POTS we use that term. For the purpose of this video, the symptom triggers are inclusive of the many forms of dysautonomia and are not intended to mean that all triggers are related to all forms. The video is an overview and not specific to any one form. I hope that clarifies that for you. If you have further questions, please feel free to email webmaster@dinet.org Thank you!
@@DysautonomiaInformationNetwork Okay thank you! I love the videos they help! Not many other channels talk about dysautonomia.
I have Vasovagal Syncope,ive been dealing with this since 2015 and i finally had a doctor tell me what it is and whats going on with me.
My triggers are heat,stress,lights,crowds,traffic and inused to be able to run 5 miles a day now i can barely walk 1 mile w/o feeling super dizzy.
And just like yours my heart rate drops.
When i tell ive tried everything i tried everything,now im currently on pristiq because of this drove me to depression so this is no joke.
Do you have any advice or tips when a episode occurs?
@@kenzoblytheproducertv4934 I deal with those same things, and im still pretty new to it, all the doctor told me was to drink lots of water and salt, so they werent very helpful, I am still trying to figure out more about it.
How are you dealing with this crazy disease? Im facing the same since last September, this is so sad
Being alive is my trigger 😂 but my kids and hopefully soon grandkids are my life! Every day I’m shuffling 👩🏻🌾😜
Before I could fly up stairs/hills. I ran all throughout HS, the Army, and after. Now I won’t do a couple flights of stairs without taking a break, but I am terrified of elevators 😂.
I am so glad to know that I am not the only one who’s terrified of elevators. Most people when they find out that I do not ride an elevator because my fear is this intense they judge me and don’t understand. I have been stuck in multiple different elevators throughout my life. This last time I was stuck in an elevator it just triggered me so much I said nope I am done I just can’t go through being trapped in a very confined hot enclosure and still be able to function properly without panicking. So to me having an intense elevator phobia makes perfect sense in my mind. It’s just nice to see when others share similar fears and phobias to know that we are not so alone in are ways 🥰.
One thing I learned about my POTS this year that has made my symptoms much worse is both getting Covid this year. It re messed up my whole central nervous system from having Covid and it also has left me with long haul Covid symptoms that I still am struggling with. Where as before getting Covid my POTS symptoms where still there but not nearly as intense and not as frequent unless I was exposed to heat, prolonged exercise, or in warm water or stood up to quickly. Before getting Covid I would pass out a couple to a few times in a whole year. Now after having Covid my symptoms with POTS are much more intense and I feel like I am going to pass out several times a week. I have already passed out 4 times just in 2 months.
Another thing I have recently learned that makes my POTS so much worse is Flying. I was on an air plane a couple of months ago as well and NEVER AGAIN. I have flown before a long long time ago before I had POTS and never had a problem or any symptoms from flying.
I am still traumatized from what happened to my body during are flight we took not to long ago with having POTS. I had no idea that the change in altitude and air pressure would make my POTS symptoms so much worse or I never would have flown. As soon as the air plane starting taking off I was fine. I had really good ear plugs in that I had bought because this was the things I had research and knew to be prepared for when flying so my ears wouldn’t hurt during the flight. It turns out that my ears during this flight where the only thing that didn’t end up effecting me at all. I guess I did end up picking out some great quality airplane earplugs to help reduce the chances of your ears popping because they definitely helped my ears throughout are 4.5 hour flight.
As soon as the airplane kept ascending though I felt it in my chest and my head started getting very light headed. I immediately started feeling dizzy like I was going to pass out. My eyes where getting spotty and blurry. I could feel my blood pressure dropping and my chest pounding faster and faster as the airplane was going up. I kept thinking to myself o my gosh I am having a major POTS attack. I just wanted the air plane to stop going up and up 🤣 but obviously that wasn’t gonna not happen. Finally after reaching maximum altitude I was thinking okay I should be alright now…..wrong.
My chest kept pounding to where I literally thought I was having a heart attack. I was having a heard time breathing because you don’t get as much oxygen when being up this high in altitude as it is even for a very healthy person who doesn’t have POTS it can effect their oxygen levels some. I blacked out at least twice during the flight. I just kept thinking to myself are we almost there yet are we almost to where we need to go to the next airport.
Every drop in altitude the plane made while up in the air and every incline in altitude my whole entire body could feel internally and made me so physically and mentally sick.
Every slight change the plane made I could feel so intensely and was able to notice. It literally felt like being strapped to a tilt table test that was 4.5 hours long. I was in my own bodys worst nightmare and on top of this I didn’t even tell the people I was traveling with. I did not want to upset anyone or make a big scene while on the airplane. So I would just ask my travel buddy's “are we there yet?” “how much longer till we are there?” 😆.
I will say that when we where descending and getting ready to land I was standing up since the flight attendant was showing me some cool things during a show and tell tour for me since I am on the autism spectrum and had not flown in 15 years. I noticed when I was standing up and the plane was getting lower and lower it actually did not affect my body with my POTs nearly as much as the take off and ascending upwards while getting higher and higher in altitude that was so much worse on my body and POTs then the landing seemed to be going down in altitude and I have know idea honestly why that was.
When we finally landed I thought my vitals would go back to base line but it didn’t. I still was having such intense sharp chest pains and my blood pressure was still effecting me and I was still having a hard time with my oxygen levels that I ended up needing to get checked out by paramedics at the air port. I told them I had POTS, EDS and autism when they asked what my medical conditions where. They looked at me like I was crazy when I told them I felt sick because having an invisible illness is so hard and a lot of people even in the medical field still do not take us seriously because we might “look alright” on the outside. They did my vitals but at this point it had been over an hour after we landed and we where waiting for another flight since we where supposed to fly somewhere else since it was not a non stop flight we had to transfer. My vitals where a little off but nothing major by this point and I kinda figured since it had been over an hour later that they wouldn’t be able to see anything significantly off at this point.
They probably thought I was a hypochondriac or something 🤣. I knew what my body felt like inside and out during that flight though and how it affected me and I know I am not “faking”. So that’s all that matters in the end. If I was faking or a hypochondriac I would have made a big scene and production DURING the flight 🤣 and I didn’t. I kept my mouth shut and didn’t want to make a big fuss. I didn’t want any emergency landing protocols going on so I just sat there miserable alone emotionally and trying to hide and play the whole thing off in a very covert manner because that’s usually how I am with my invisible illnesses and don’t want to make any big scene.
I will say though after this whole flying experience has happened I will never ever fly again. I am honestly still traumatized from what it did to my body. It felt like being trapped on a tilt table for over 4 hours and having no way off or out.
When you have POTS flare ups and symptoms on land you have emergency personnel who can help you quickly and you can go to the doctor or hospital if need be in a mater of minutes.
But when you are on an air plane and start having medical symptoms and complications from conditions you already have and there is no hospital or doctors office or any emt or nurse right there with you it’s very hard and scary. You are there seriously suffering alone with your body’s reactions form having an imbalanced central nervous system.
I really wish I knew that flying was going to affect me this way ahead of time but sometimes you just honestly don’t even know until after the fact.
Everyone’s POTS is different and how certain things trigger there symptoms and flare ups. Some people might be able to fly with POTS but others are not.
@@magickingdom3361 I’m flat to know that you made it out of that airplane 🙂. After the second time getting really sick for what seemed like no reason I suddenly was terrified of getting in an airplane. I flew many times before, and considered it fun. For some reason unknown the simplest things were causing anxiety. I was waking up in cold sweats thinking about being on my next flight😅. To make it worse I saw someone on the news freaking out aboard a flight yelling “I gotta get outta here”😂Thank god that all passed, and I’ve been airborne several times since. About a year ago I became ill again, but thankfully after doing research and fighting for it I was given the Tilt table test. I found out I’m not crazy after all😃😃. I’m better now but definitely not the same as before. Thank you for sharing your experience. The only thing that worried me about flying was claustrophobia, but thanks to you I will be better prepared for my next flight🙏🏾
I hate when people assume I'm being overdramatic on elevators. I reach out for someone's hand if there's no handrail. I never knew why I was SO sensitive over elevators. Regarding flights, I flew 3 times and cried every time holding my head like it would surely explode. I'll drive anywhere I can but I'll NEVER fly again in my life! NOTHING is worth that!!!
I’ve never Heard of it
All about low pressure. What about us with high blood pressure from dysautonomia:(
People with autonomic dysfunction can have baroreflex abnormalities causing fluctuations in BP. Depending on the type of dysautonomia, it can cause severe and dangerously high blood pressure. That said, most people with the more common types of dysautonomia experience drops in BP with changes in position.
I have dyspnea post Covid which is often triggered by talking especially when I have to explain things etc… I wonder if this is dysautonomia? All tests are negative and I’m waiting to see a specialist.
I'm sorry you are still struggling since COVID. Dyspnea on its own is not dysautonomia. It is fairly common for people healing from COVID to have some respiratory issues. You are taking the right step in seeing a specialist. Many disorders can cause dyspnea. You didn't say what type of specialist you are seeing, but hopefully, you will be seen by a pulmonologist to find out why you are having difficulty breathing. We wish you the best of luck.
@@DysautonomiaInformationNetwork thank you!!
Electromagnetic radiation of wifi, bluetooth, cell towers is a huge trigger for me.
Thanks for sharing.
Yeah, stairs are rhe worst. Btw, i really like cold showers, its great
Do you that dyautonomia messes with circulation..my feet r blue..cyanosis.
Yes it most certainly can mess with circulation causing things like blood pooling, cyanosis, and other disturbances. This video is about triggers for symptoms, can you share anything that triggers your symptoms?
Doesnt anyone get more triggered by smells? I was going this dish for dinner and got this Asian BBQ marinate sauce. I was so excited. Thenb I opened rhe bottle. It didnt smell gross, but it made so nauseated and made my other symptoms flare for a while. Before POTS, I would have been fine with rhe smell
Smell has a very strong, but individual effect on people. So although it isn't generally reported as a trigger, nausea is. So any smell could hit you in a way that makes you feel nausea even if you didn't in the past.
What is life expectancy for disautonomia patients????
Not different
Squatting down, n going to a standing position. Trued doing squats at a gym n my hr gos past 200
Can dysautonomia cause very high blood pressure attacks?
Dysautonomia can cause shifts in blood pressure, sometimes radical shifts. Blood pressure changes are a classic symptom of dysautonomia.
I had breast surgery recently, I've been dizzy and hot and drained since.
It can be fairly common for people to experience dizziness after surgery along with fatigue. Even people who do not have any form of dysautonomia can have symptoms of orthostatic hypotension after surgery or illness. That's why doctors won't make a diagnosis until symptoms have been consistent for more than 6 months. That being said, I hope you have discussed the dizziness and other symptoms with your surgeon during follow up visits or with your PCP. It is not uncommon to need a supplement or even nutritional changes after surgery to help your body adjust. Best of luck with your recovery.
Thank you 😊
@@monathomas1777 You're very welcome. Best wishes for a speedy recovery.
My 19 year old daughter is being worked up by her doctor and specialists for possible POTS. I just learned of Dysautonomia.
How do you guys live like this? She keeps fainting, or feeling faint at work. She's only 19 and always tired... Is she going to get better? How can one work and drive in constant fear of fainting?
I'm really sorry to hear that this is happening to her and it is very frightening in the beginning. Knowledge and patience are the most important things at the beginning of this journey. First, there is no cure for POTS/Dysautonomia, however, this is a disorder that is very different from person to person. Depending on what brought on her symptoms; virus, surgery, stress, etc., or another underlying illness; CFS, MS, diabetes, etc., the treatments are very different. Also, you DO get better. For some, symptoms resolve over time, for most people though symptoms come & go, with varying levels of severity. But you learn to live with it as you discover the things that help the symptoms. For example, dehydration is of paramount importance, along with electrolyte levels. There are many, many ways to help yourself as well as medications that may help. Some people are not able to work, at least until getting their symptoms under control, some others work from home or unfortunately are unable to work altogether But drivjng is not an issue as it is related to dysautonomia. The cause of fainting (syncope) or presyncope with dysautnomia happens with a change in body position (sitting to standing, laying down to siting up) it does not happen when sitting driving, unless there is another underlying illness that can cause that. Please start at this link from our site for more information about the disorder and how to manage symptoms. www.dinet.org/info/pots/ The more that you can learn about this the better off your daughter will be and the sooner she will start to learn what works for her. Best of luck.
@@DysautonomiaInformationNetwork thank you so so much! 🤗💜
Someone from UA-cam saud maybe it's not IBS, maybe it's dysautonomia... Which is why I'm here and surprisingly, I have all the symptoms 😢
I hope the info helps. For more detailed information about dysautonomia, check out our website and forum. You can also print out materials to bring to your next doctor visit. It may be helpful. www.dinet.org
My biggest trigger is strong emotions.
Ok.. so how can this be treated?? THAT’S the big question.. who do you go to, and what can be done?
If you explore our channel - ua-cam.com/channels/UZMfU6I2622J6Fv50oFaiQ.html and our website, www.dinet.org, there are many videos and articles discussing treatments, medications and self-help.
For me, sitting is even worse than standing. Idk if it's the bending at the waist? But that's my experience.
@user-fz7rs4im7w Thanks for sharing. What type of dysautonomia have you been diagnosed with?
I curious how old you are my son 18 and he has all the symptoms. They say once he stops growing his heart will catch up but like I said, he’s 18 now. Just wondering what kind of life and job he will be able to do. He has a high IQ, but with the brain fog, he is not quick. He sleeps most of the day.
If your son has been diagnosed with POTS or another form of dysautonomia, there is no such thing as his heart "catching up." Most people with dysautonomia work hard to manage their symptoms and, over time, learn to live happy, productive lives. The fatigue is not only unusual with dysautonomia, but it is also common with CFS and other disorders. So the first step is to bring these symptoms to a doctor who will look at all his symptoms and not dismiss them. Once he is diagnosed, there is a lot that can be done to improve his health, manage his symptoms and improve his energy level. Best of luck.
Lack of peristalsis in colon
@KathyElam-xi8bf GI dysfunction in its many forms are very difficult symptoms to live with. Can you share what triggers make your peristalsis better or worse?
Laying horizontal starts my gut moving
My hisband is my trigger
Is there a cure for dysautonomia
There is no cure for dysautonomia. There are people who report long periods of remission or a resolve of symptoms over time. However, most people with dysautonomia report periods of mild symptoms along with times when a "flare" of symptoms is triggered.
I have nOH..no cure and nobody ever talks about it either. I only hear about POTS and it's SUPER FRUSTRATING..you can never find any info about nOH unless it's connected to MSA or Parkinsons..God forbid that comes my way 🥺
Diet is very important!
Stop eating crap & eat healthy!
Lol these are CIRS symptoms. NOT disautonomia. Jcf with UA-cam cracking down on false medical info how are you allowed to have a channel??
These are absolutely symptoms of dysautonomia, all very well documented. That said, there are also many other disorders with overlapping symptoms. ,Also, the majority of people with dysautonomia have comorbidities. But your comment is wildly inaccurate & false.
I highly recommend the “Curable” app to anyone struggling with dysautonomia! It has helped me tremendously with my chronic pain, fainting and fatigue!
What do you mean?
Thanks will take a look
Just diagnosed 3 weeks ago already had Atrial Fibrillation & High Blood Pressure Now these go up & Down all day ! Going up Stairs is a Real Struggle for me Fatigue also My Balance is Real bad- ( Numb feet heavy legs think that’s as I am due 2nd Spinal Fusion) also Frequent urgent urination day and Night and slight change in eye sight and Brain Fog 🙄🤔
Stairs are a terrible challenge for most people with dysautonomia and if you have spine issues as well, I'm sure stairs are not an easy thing for you at all. Your symptoms are very common for people with dysautonomia and it is fairly common to develop issues with the autonomic system after having spinal fusions and surgeries, as well as injury. Hopefully after your next surgery some of these symptoms will improve and at the very least, your doctors will be able to focus on treatment of your dysautonomia dn AFib symptoms. Best of luck with your surgery.