Holy crap this is making more and more sense. I've always been told my random heart palpitations and sweats are just anxiety yet I know they happen when I'm not having ANY anxiety. And now my body seems to be unable to regulate it's temperature. I go from feel extremely hot (like unable to breathe hot) to freezing in a short time. Sometimes my chest and face will be burning but my arms and legs will be freezing. I'm extremely heat sensitive and prone to bad brain fog and nausea. I can't exercise too much without being unable to breathe. I also can't digest most foods properly and am always getting acid reflux or other problems. Every time I've been to the doctor my blood pressure tests as normal (probably because my heart palpitations never happen then...) but I have high cholesterol despite being a good weight and having a healthy diet. EKG shows normal heart function.
Hello Jessica. I'm sorry to hear you are experiencing all of these symptoms. Autonomic dysfunction can take on many forms and is difficult to diagnose especially because it doesn't always happen when we are in front of our doctors. If you have a good relationship with your PCP, try bringing in some info about dysautonomia so you can have a discussion. They should be able to help you find a specialist that can run specific tests to help diagnose you properly. You can find information that you can print or download on the DINET site. Just an FYI, cholesterol is not associated with dysautonomia, but the other symptoms you name are and it would be worth considering if your doctor agrees. Best of luck finding relief for your symptoms.
Your videos have been helping me to articulate my symptoms to my cardiologist. It’s been an uphill climb. But I finally got put on a beta blocker and it’s been helping so much. Still have a ways to go but making progress. Thanks for sharing all this valuable information!
Thank you so much! We are so happy that the videos have helped and that you are starting to feel better. This disorder certainly requires patience and trial and error. It's great that you are on the right track. Wish you the very best.
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
OMG. The information you give in this video is life saving. I've suffered for years and not one Doctor takes me seriously. Now I know what words to use in medical appointments so I can get the treatment I need. Thank you so much for your videos ❤️
Dysautonomia can be hyper...sympathetic or hypo....parasympathetic. I experience mine like when you least expect it my system goes into hyper flight or fight with severe blood pressure and arrythmia. And there are no brakes. In other words it doesn't correct itself by getting the equilibrium with the parasympathic. I'm heat intolerant and have a sensitivity to noise and my nervous system gets overloaded by too many people or too much activity around me.
It is almost 2 years since u posted this comment....can u please let me know how u deal with it, like pharmaceutical or any conservative treatment....if u will reply that will be of help to me....
With me it started when I bent over to pick some thing up. I would get nausea felling then get dizzy. It was like seeing double that would last about ten seconds. As luck would come my way I went to Florida Rehabilitation for the handicap which I am. Hearing loss. They sent me to 5 doctors. After 3 years I went to rehab. 3 vists later I was on treadmill where when i got off blood pressure went down 15 points. They told me they could not do anything for me. Rehabilitation sent me to local DR. Thompson. That's where I found I was not crazy. He has the same condition only his is worst. He passes out from it I have not past out hit many walls because i get up too fast. Now 15 years later I am dealing good with this.
Hi, your video and explanation was spot on. Thank you for having me understand. But I have a question. I notice that every time I touch something really cold, my heart has an uncomfortable feeling. Do you think I should get it checked or it’s really nothing to worry about?
We are so glad that the video helped you. As for your question, that is not a symptom we have heard of in association with dysautonomia. However, as part of the diagnostic process in determining dysautonomia, there is usually a screening of heart function. It is fairly standard to have an EKG and even an echocardiogram as part of the initial testing. If you have any discomfort or concerns, we would recommend talking to your medical team - either the doctor treating you for dysautonomia or your PCP. It is always best to address concerns rather than ignore them. Best wishes.
Could this be what I have? I get random heart palpitations. I go from extremely hot to cold. I also suffer from cold intolerance and heat intolerance. Just a bit of heat and I’m drenched and same with cold. Always blamed on anxiety. I’m constantly changing my furnace from 68 to 73 lol every hour. My face could be hot and my hands legs arms and feet ice cold. I’ve had the full work up and the doctors blame anxiety. Ekg, blood tests, 24 hour heart monitors etc etc. nothing ever comes out of it. Shortness of breath with little exertion. I am a smoker though. I’m 37 years old.
Dysautonomia, including POTS, has very specific heart rate & blood pressure changes, amongst other symptoms. Of course it is possible that you have a form of dysautonomia. There are tests related to autonomic nervous system that can be done that would narrow down the possibilities. But there are also other conditions that can produce your symptoms. If you feel strongly that something is being missed in your work ups, try talking to your PCP about having more specific tests done. If your PCP is not receptive to your desire to continue looking for answers, then you should look for a new PCP that you can trust. You can read about testing for the autonomic nervous system and dysautonomia on our website - www.dinet.org/info/dysautonomia-disorders-diagnostics-info/autonomic-testing-for-dysautonomia-r206/ We hope you find relief for your symptoms no matter what is causing them. Best of luck.
I was recently diagnosed with dysautonomia and it’s so horrible. I m nauseous all the time since the moment I wake up. I even prefer to stay hungry and not eat anything. My heart randomly starts beating faster and I think I’m dying. I don’t really know what to do. I have been on medication for two years now and nothing seems to work.
I'm sorry to hear that you are feeling so ill. It is a rough road, but it can get better. Unfortunately, progress is frequently made in baby steps, trial, and error with meds, and learning to avoid symptom triggers. You didn't say what type of dysautonomia you have or what they treated you for before they made the diagnosis. But regardless of the type, treating dysautonomia disorders takes patience. I know that it is very hard to hear when you really want to feel better right away. Please consider joining the DINET forum for support from other patients and tips on managing this complex illness. Visit www.dinet.org/forums Best of luck
If you are seeing a doctor that thinks you are "crazy" for reporting symptoms, then the first thing you need to do is to find another doctor. A good physician will take your symptoms seriously and even if they feel that you do not have an illness, they should take your symptoms seriously and work with you for a resolution.
I have heat intolerance like breathless in heat and shivering in normal water bath or wet in rain and breathless after physical activity but my all medical reports are normal is it disautonomia or pots or autonomic
Temperature intolerance and shortness of breath are common symptoms of autonomic dysfunction. POTS is a type of dysautonomia and there are many other types. You can learn more about the symptoms specific to POTS on our website. visit www.dinet.org and click on the Information Resources section to learn more. Best of luck with your diagnosis.
@@jainendramishra6855 Yes, they can help in many cases. You can find a video about medications and symptom management in the other videos on the channel and our site. Thank you.
Most often cardiologists or neurologists are the specialists that are best informed about these disorders. That said, not all cardiologists or neurologists are specialists in dysautonomia. On the dinet website, there is a search for specialists in dysautonomia. There are generally long waiting lists and many require initial testing by a PCP. You may want to start with a discussion with your PCP and ask for their help in finding you a specialist. Best of luck.
I'm so sorry to hear that but you aren't alone. Over 30% of people with a form of dysautonomia are disabled. We believe that number is low because many people who develop POTS, for instance, are in their teens when they become ill, so they may never begin working. Also, it can be very difficult to qualify for disability with dysautonomia alone. It isn't impossible at all, but it isn't on the SSDI list of disability illnesses, so qualifying is a challenge. Those people aren't included in the 30% either. So we are pretty sure the number is closer to 50% disabled for at least some time in their lives. Not all disability is permanent. If you miss working consider a volunteer position that may let you work whenever you feel up to it from home. Wish you the best.
@@DysautonomiaInformationNetwork I still gotta figure out my money situation. Its so new I have had no time to figure out money. But hey, it is what it is.
One of the most common symptoms of dysautonomia is brain fog. It makes it tough to remember and to think clearly at times. It is not present 24/7, so don't ignore memory issues if they don't go away. Brain fog comes and goes just as many other symptoms of dysautonomia.
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
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.
Thanks for the question, it's a good one. People with Fibromyalgia can develop dysautonomia but fibromyalgia is not considered dysautonomia on its own. In other words, dysautonomia can develop as a secondary disorder to Fibromyalgia. But many people with fibromyalgia never develop dysautonomia. I hope that answers your question. Best wishes.
There are many things that can cause diarrhea, but it is a common symptom, along with other GI issues for people living with forms of dysautonomia. I don't know what other symptoms you have but if you believe you have dysautonomia, feel free to share info from this video or our website with your PCP. Visit www.dinet.org for more information. I hope you feel better soon.
I have this and have been in the ICU 5 times this past year. They did place a pacemaker which has completely resolved the syncope. BUT my heart rate still goes very high, anxiety thru the roof, GI issues, inability to control my body temp, nausea, on and on. This is hell.
Yes, it truly can be. Resolving the syncope is great news though. Hopefully your other symptoms will be manageable over time. One of our Medical Advisors, Dr. Satish Raj, advises treating symptoms one at a time. In your case this may mean working with a GI specialist to help ease the GI issues, nausea, etc. Working with a specialist for a particular symptom(s) can be very helpful, regardless of their expertise in dysautonomia. Their focus on easing your symptoms can go a long way towards a better quality of life. Hang in there.
what causes your anxiety.....is it just by itself or there is any trigger. Brother please let me know how you control your anxiety, like the meds u take and other intervention...
@yasirquershi3070 Well I just got out of the hospital again. This time with afib and a stroke. The Dysautonomia "flare-ups" cause the anxiety. It's not constant, but frequent. The treatment for the anxiety aspect is a clonodine patch and valium.
