DINET - Dysautonomia Information Network
DINET - Dysautonomia Information Network
DINET, the Dysautonomia Information Network is a 501c3 nonprofit organization dedicated to providing information, awareness, and support to people living with dysautonomia. We will be posting new videos each month about different topics related to living with dysautonomia, managing chronic illness and also wellness topics. We hope you find these videos helpful and informative. For more information about dysautonomia, please visit our site at www.dinet.org Thank you.
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Thank you so much for making this video! It has some great tips for the “healthier” people in our lives who aren’t sure what to do.
I have this as well! It was truly a scary test when you didn't know what may happen. People did not believe me and thought I was faking as well. It was so frustrating trying to get others to understand. I pray I can stay normal.
Thanks for the video and linked article. Since the article notes that Modafinil (Provigil) is used for this, I wanted to comment that it helped me a lot. But sadly, after 5 years it sort of stopped working - but it got me through a period of caregiving for my mother, who had Alzheimer’s and rheumatoid arthritis. So grateful my doctor offered Modafinil.
The Turnto app has great resources for exercising & pots
Hello mam! I have pots and day before I started i ate a lot since then there stomach problems also. So my gi is reason for pots?
I have syncope! I have had it since I was a pre teen and im now 14 I was really confused and worried on what was going on until I heard that you sometimes are awake with syncope which is what happens to me.
Thank you sooo much!! Going to let my family listen to this❤
Everyone has something they are dealing with. I do have Post Traumatic Tethered Cord Syndrome and I have massive nerve damage which caused massive Pain from my lower spine to the Bottom of my Feet. So half my Body is affected. I push myself every single day of my life...I push extremely hard.
I get dizzy faint every day. Low bp but also really low hr. Blood poolw in cakves. My sodium so easily easily electrolyte drinks and vitassium. My legs guve out
big pharma is pushing junk science. these medications are worse than useless.
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.
I have post exertional malaise, where i get profound neurological issues after exercising
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 - kzread.info/dron/UZMfU6I2622J6Fv50oFaiQ.html and our website, www.dinet.org, there are many videos and articles discussing treatments, medications and self-help.
I asked that question because I’m tired of going through hell every day and night.
How do you stop heat intolerance permanently?
Sadly, you don't. Heat intolerance is a symptom that can be treated as a symptom. You can manage symptoms but you can't get rid of them unless the underlying cause is cured. The best thing to do is find the treatment or treatments that help with the symptom. I wish there was a way to get rid of many of the symptoms of dysautonomia and they will improve over time with treatment. In the meantime, treat the heat intolerance by trying different things until you find some relief. Best of luck
I thought that all I was having was presyncope episodes until I had one of my regular spells in office with my PT. She told me I had COMPLETELY fainted!! Apparently my idea of what counted as a full faint was closer to Hollywood: so I thought you needed to completely fall over, lose consciousness for an extended period of time... NOPE!! As long as you lose all of your senses for any amount of time, including balance, you've fainted. Whelp...that changed EVERYTHING for my treatment. 😅
Syncope is a loss of consciousness and/or a loss of control of your body, frequently described as "going limp" Many people report being able to hear things around them but being unable to stand or speak or control their bodies - including incontinence for some. Any symptoms like dizziness without being incapacitated is considered presyncope.
Um. I had no idea that this could even exist. My dr might not be outing the pieces together? I wonder.... does the condition effect rem sleep....reddit off i go
For me i want to exercise but i get hurt easily like pulling muscles and hurting my legs but im used to laying down so my legs and leg muscles are always tense and wont stretch out like i cant touch my toes because my leg muscles are so compact from no exercise for a while but im sadly a kid so i cant do much like buy things etc 😭.
Don't think of exercise, think only of small movements, gentle stretching. You won't get hurt and you will still get the benefits of circulation and muscle tone. There is a product called Exercise bands. They are like very big rubber bands. Start out with the lowest strength (resistance) and you can do the movements (stretches) laying down if you need to. You can stretch your legs and arms this way. Just one suggestion. If you can sit up in a chair, there is something called "Chair yoga" that can be helpful. With all of these things, you start with the smallest movements until they get easy to do. And don't do anything before you clear it with your doctor. But keep trying to find ways to move gently to help you stay as healthy as possible.
This video helped my friends and family have a more understanding on what's going on for me. I have NCS/VS and POTS I I faint and near faint all the time Presyncope happens to me almost daily. The episode that made my mom take me into the hospital for testing was my brother and I were play fighting i hit the bar of the porch. Pain surged as I tried to walk my limbs went limp and heavy and I fell. I screamed for my mom and brother they came rushing but my vision started to fail and they were blobs and I couldn't hear them so I was just screaming at my mom. She said I looked dead with blue lips but I was screaming at her. Fainted in high school EMS guys told my parents I was faking it bc my blood sugar was fine. But the daily struggle is trying to workm I called off this Wednesday bc I physically couldn't drive. My heart rate sitting would not go under 120bpm for the longest of times. I get clammy, breathing starts to get hard and I become super nauseous.
Thank you for sharing your experience. Presyncope and syncope is a common symptom for most of us. It is very difficult to deal with and very scary. I'm so glad to hear that the video help your friends and family to understand what you go through. For many of us, the episode doesn't last a very long time, so the initial episode can be over quickly even though the fatigue, headache and feeling unwell lasts much longer. Thank you for sharing. Best wishes.
They don't work. My life is still horrible.
I'm sorry to hear you haven't found anything to help yet. But don't give up. It takes finding just the right combination of treatments, sometimes medicine with lifestyle changes, to minimize symptoms. It is not easy and requires a lot of patience, but remember that effective treatment is different for each person, so you have to keep trying different things including things like nutrition, hydration, movement, etc. Hang in there.
Try to stay positive. It definitely makes a difference. Focus on and be thankful for every little thing that you can do. Feeling down/depressed definitely makes me physically worse. Often this is brought on from trauma to the body whether it’s physical, emotional or both. Both in my case and for me cutting out a toxic family member who was causing severe stress helped me more than anything. Triggers of mine: caffeine, too much sugar/carbs, alcohol, dehydrated/not enough salt, not eating frequently enough, too hot or too cold, poor sleep, stress, pushing myself too far, not taking enough breaks and weather changes. I share my triggers in hopes that it will help you or someone else. It took me years to understand them all. I’ve also found grounding, especially at the beach (possibly from the salt?)beneficial for inflammation and pain.
IV Saline???
Yes, for some people it is required to maintain the right balance of electrolytes and fluids and to help minimize symptoms.
That was a really good list. I wish people would do that for me. I hire people to help me. I’ve been in chronic pain for 25 years six spinal surgeries.
Sorry to hear that you have chronic pain. Autonomic dysfunction is fairly common for people with spine issues. Thanks for sharing
I have this POTS perspiration odd times, severe small fiber Polyneuropathy, 45-50%hf, fatigue, seronegative lupus, seronegative rheumatoid arthritis, dizziness, severe restless leg, anxiety, just a lot of things going on on. On tilt test my left side had full neuropathy symptoms I panicked trying to not to pass out, rapid heart rate, told increased by 70. It was the longest 10 min of my life testing
Excellent thankyou ❤
So glad you found it helpful. Happy travels.
I have vasovagal syndrome. Is it the same?
Yes, they ae the same. It is also sometimes called Neurally Mediated Syncope.
I wish for others to support me, but I don't expect much, so even when they go a little out of their way to help me, I feel immensly happy.
It is tough for us to understand what is happening in our body sometimes, so it makes sense that it is very difficult for other people to "get it". It is great that you are appreciative. I have personally found that asking people for very specific things gets me better results - everything from "it would be great if you could come here instead of going out today" or "if you go past a store, could you pick up milk for me?" to "could you put aside about 15 minutes in the next day or so to help me wash my kitchen floor?" Whatever it is that might be most helpful to you. Just a thought. Best wishes
I have dysautonomia and for me the gohan (rice) sweet potato advocate are good, I don’t eat sugar neither fast food 🥲🥲
I'm a medical coder and I experienced 212/191 BP for the TTT, I get really cold and I sweat and freeze at the same time, I have GERD and I was diagnosed with overactive bladder and urgency incontinence after I got COVID. I get purple and blue arms and my pulse can change from 63-116 in a matter of a couple minutes, just lying there. Please help me.
I have that too, where I'm freezing but sweating like crazy. It doesn't always happen but if I'm stressed, it kicks in right away and I'll have to change my shirt cause I'll sweat right thru it
I'm sorry to hear that you are experiencing all of that. But as @candyland8903 points out, this is unfortunately a common symptom that happens with this disorder. I am going to assume you have been diagnosed with HyperPOTS since you posted your comment on this video. HyperPOTS is directly related to dysfunction that centers around the adrenal gland function. So rises and falls of the body's chemicals like aldosterone, norepinephrine, etc are behind the symptoms you are experiencing. It takes a lot of patience to find the right combination of medication and lifestyle changes that will alleviate some of the more difficult symptoms because treatment is different for each person. Some people suffer with GI symptoms as their worst, others these surges of adrenaline or decreases in the body's natural chemicals. There is a great article on our site about HyperPOTS, written by an RN who has HyperPOTS. The article gives a much more detailed explanation. It's a great resource. You can read it at this link if you are interested. www.dinet.org/info/pots/hyperadrenergic-pots-hyperpots-an-overview-of-a-pots-subtype-r220/ Understanding what your body is experiencing is extremely important so that you can better inform your doctor what is happening and to better participate in your treatment. I wish you both the very best. Thank you both for posting.
@@DysautonomiaInformationNetwork I actually have not been diagnosed... Doctors are telling me it's not abnormal
@@CoderNessCCS We can't diagnose you obviously, but we can strongly encourage you to look for a new doctor if the one you have now is telling you that a BP of 212/191 is normal or purple and blue arms are common. Find a cardiologist that will listen and take your symptoms seriously. It is not uncommon to have to go to a few doctors before finding one you can have good communication with but it is essential if you are to get to the bottom of your symptoms. I wish you the very best.
I'm really shocked that one of the main symptoms of this was not listed....( I was confirmed/ diagnosed with Hyper POTS at Mayo Clinic via a catecholamine test).... Adrenal surges is a MAJOR symptom and EXTREMELY difficult to manage, even with medication and lifestyle.... I mean, it's right there in the name : hyper adrenergic AKA hyper-adrenaline
The video begins with explaining that HyperPOTS involves increases & decreases in adrenal function. It also discusses changes in renin, aldosterone, norepinephrine and epinephrine - all chemicals released by the adrenal gland. These surges and drops in these chemicals are what cause the symptoms you experience. I think the confusion here is that the video states the characteristics of these surges and drops i.e; anxiety, sweating, tremors, etc. Those are the symptoms experienced within the body - the cause are the adrenal surges and drops of these chemicals because of the dysfunction inherent in hyperPOTS. I hope that explains the difference. There is a great article on our site about HyperPOTS, written by an RN who has HyperPOTS. The article gives a much more detailed explanation. It's a great resource. You can read it at this link if you are interested. www.dinet.org/info/pots/hyperadrenergic-pots-hyperpots-an-overview-of-a-pots-subtype-r220/ Thank you for reaching out.
My case, I have dysautonomia post covid 🥲🥲🥲 …
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.
Thank you for your video i have dysautonomia post covid, I’m going to try with the bike, because i really feel bad almost all the time 🥲🥲
I really hope it helps. Start slowly & take your time building. It can be frustrating because we just want to go back to how it was before, but know in advance that it is a slow, steady journey that works. Best of luck.
My shoulder has been doing this for the longest time.. it got worse as I've grown older.. had learnt to avoid certain angles.. physio didn't help either 😅
What brands do you recommend? There are a lot on Amazon and at sporting goods stores but I didn’t know if the level of compression is not up to par of actual medical supply products. Thanks
The best way is to get a prescription from your doctor. A medical supply store will measure you & give you garments with the right amount of compression to help you. Other than that, I would say to go to a store in person so you can feel the amount of compression yourself. If you buy online, make sure the product allows returns so you can try a few if needed. It may take a little longer but be patient & you'll get tge right fit.
@@DysautonomiaInformationNetwork great advice - thanks!
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.
Finding out what has been happening to my right ankle and left knee all these years was subluxation was interesting lol 😂 Didn't know it was not normal or a part of my chronic mystery pain. Only just last month was told hEDS.
Got dysmotility what to eat
There is no set diet for dysmotility per se. But eating a diet rich in whole grains, fruits, vegetables & avoiding too much red meat is generally considered healthy for all of us. But with dysmotility, you should check with your doctor for a referral to a nutritionist to help you construct a meal plan specific to eliminating your symptoms.
Too early hot and cold both are killing any tips mam I have postural orthostatic tachycardia
Is hsd cause Cervical instablity
Cervical instability can present in people with HSD, but there are also other causes of cervical instability. If you have symptoms you should be seen immediately by a physician. Cervical instability, regardless of the cause, should be treating promptly. Best of luck.
Thank you for this video. I watched the other linked video about compression garments. Unfortunately I have silent reflux so I’m not supposed to wear anything tight around my abdomen. I’m kind of bummed I don’t get to wear them! I’m wondering what other people with POTS & GERD do.
We are glad you found the video helpful. Yes, compression garments around the abdomen are not a good fit for someone with reflux, if it increases your symptoms. You can still benefit from compression garments around your legs. They will still help with blood pooling.
You may be able to try the special compression tights they make for maternity. If that's too much you might try maternity support panty hose. They will be less, but some compression.
by the way Jobst makes them. I've used their socks which are good but not these, they also come in 5 colors. Mrs. K.
i might hve this
i get at night! between 10pm and 7am heart rate jumps temp every timei wake up ! scary its been a year. it got wost last dec
There are many things that can cause changes in your heart rate. For most types of dysautonomia there is more involved that waking up. Have you been checked for sleep apnea? With apnea a person can stop breathing and the body wakes itself up - usually with a pounding heart rate, frequently sweating and other symptoms, It can be a very scary sensation and it is certainly worth discussing with your doctor,
i did go to my doctor, in jan did ecg whore a heart molter in feb results were noirmal i dont hv any disconfort last sat night 230 am my heart rate rose wen i was awake to 85 checked bp 145 85 5 min later 133 81 p of 73 to 85 middle night p... my p is usually 60 heart rate fluctuates lots 60 to 85 dont know why
wen i wake up, several times my pulse is dfrom 70 to 85 then it goes bk down to 60 65 then sun morning middle night p stays 80s 70s even awake
Again, I would talk to your doctor about having a sleep study done for apnea. The heart monitor that a person wears to track your heart rate wouldn't pick up what happens to you when you sleep. It may explain your symptoms.
WOW!! She has sum up my LIFE over the past 20years!!!!.. Here is my timeline.. 1. 15-21 football player -- HS and college 2. 22-30 work hard .. sun, fun, drinking.. living life,, running in the sun to sweat out the alcohol.. all that fun stuff.. never did DRUGS! caffinee YES 3. 31 at a bar-- had maybe 3 drinks-- HEART RACING - never experience before- went to ER calmly and they ran test.. DOC told me "ahh anexity" I wass like what they hell is that? He said all test were good. 4. During 31- 35 constant heart paps which always CHECKED OUT as SINUS TACY.. dizzy spells and coould NOT RUN ANYMORE IN THE HEAT. I would have to exercise INSIDE GYM but was fairly NORMAL INSIDE THE GYM-- HOWEVER i notice heart rate would some times race. 5. AGE 35 another BAD HEART PAP issues racing heart rate after working on a roof.. not even hard work just working , sweeping leafs,etc up and down ladder but HEART RATE woudl stay in the 130s.. WENT TO ER same old thing.. Then went to a cardilogist and ran all the TEST even did a STRESS TEST etc..etc.. his diag was mild dysautomnomia.. GET ON WELBURTRON, GET ON BETA BLOCKER, and lose 20lbs... - I did none of that 6. Again from 35 to 40s would experience these RACING HEART RATES stuff .. then started taking XANAX which OMG help a bunch, but that drug could be very danagers.. HOWEVEE from 35 to 40s -- I WOUDL AVOID THE SUN, AVOID being outside but for limimted time... if i had to go on a boat prepare.. drink , hydrate like crazy and would jsut SUFFER .. suffer .. suffer, suffer... 7. NOW I am 50-- yes i have tried BETA BLOCKERS that do help but noting really fixes.. I have even got mild phobias from having a bad ATTACKS.. THIS YOUNG LADY SAID STAIRS!! Omg she is so right! STAIRS was my thepry when i was 15 thru 28 I would run stairs to stay in shape, now i walk them SLOWLY only when i have too!! ITS HORRIBLE!! I see 300lb people walking in HOT SUN having fun ,, walking up stairs like normal.. now i suffer when i do it, and that creats a PHOBIA.. everything she said in this video was so on point!!!
I buy mine in Amazon the good one recommended by people who knows a lot about it , there some in power other in drops I’ve been drinking for more than 3 years but I am suffering from chronic dehydration my body doesn’t absorb water no matter what I do is not feeling thirsty my body is super dry inside and out. I love pickles juice it helps a lot on my restless legs syndrome
Thanks so much for sharing. Pickle juice is loaded with electrolytes as well as salt.
Sounds like autoimmune problems
Can anxiety cause presyncope symptoms?
Anxiety and presyncope symptoms are usually tied to an anxiety attack. Although there are similarities between the episodes of presyncope related to POTS, they are very different. Presyncope with anxiety can happen regardless of your body position (sitting, standing, laying down, etc) and does not have the changes in HR, BP and other symptoms common to people with dysautonomia. So the answer is yes, acute anxiety can make you feel that you are on the verge of fainting and it feels terrible. But if you are unsure of whether you are having anxiety symptoms or a medical condition, you should speak with your doctor. Best of luck. Presyncope from any cause is not a good feeling.
What if I'm experiencing both,, beats below 60 at times resting and high sometimes over 100 can I have both
Yes it is possible to have both. Many DINET members report episodes of tachycardia and bradycardia within the same episode. For instance, a HR that climbs to 160 and then drops to 52. As with other symptoms, you should be sure to mention it to your doctor so that any other causes can be ruled out.
I've found that I have some sensory issues some days with compression tights/leggings, and on those days I totally give myself permission to not care where I'm shopping and I use maternity leggings! They're super comfy but I still get the leg compression that I need. And really, just wearing any athletic leggings that you find comfortable is super helpful. I've worn LuLaRoe (I know, I know, but they're SO soft) and Walmart ones, and those weird Yoga brands from Amazon. It's been really great to try a bunch of different kinds so that I have different fabric options depending on my outfit, and varying levels of compression to test out.
Thank you for sharing your tips. Great ideas.
I've had different issues like vertigo, ringing in the ears, feeling like I'm going to pass out when standing to long for a while now. Recently though, I've had new episodes while driving. It starts with warm feeling in my face, vision gets a little gray and I think I might pass out, but then the heat travels through my torso and my bladder/urethra area gets that hot feeling like one gets with contrast dye. Also recently, my pulse rate can be normal, then 120s, or 50 within seconds or minutes and last a few days, then go away and come back in week or so. It's very different from my usual irregular hb issue though. Is this possibly presyncope or something else?
I'm sorry that is happening, especially while driving. Any feelings of being faint when behind the wheel should be taken very seriously. It is highly unusual to have syncope symptoms while sitting that are related to dysautonomia. You didn't say whether you were diagnosed with a form of dysautonomia, only that you had symptoms in the past. So the symptoms you are experiencing recently, the flushing, vision changes, pre syncope, etc could be caused by any number of things. If you do have a dysautonomia diagnosis, I would bring these new symptoms to your doctor. If you do not have a diagnosis, I would make an appointment with your primary physician. They should do a workup including EKG, labs, etc to see what shows up. They should be able to send you to a cardiologist who is well versed in dysautonomia if they suspect thats the cause. Finally, and I know this isnt easy but you really shouldnt drive until you have an answer. Fainting when youre behind the wheel could be disastrous for you & others on the road. Let us know how you do.
I'm unable to exercise due to other major health issues that I have.
they told me to take salt tablets and drink lots and lots of water.