Dr. Diana explains the difference between POTS and Dysautonomia, and encourages everyone to be precise when describing their symptoms. This may be a huge source of misunderstanding between doctors and patients.
Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.
Dr. Diana explains the difference between POTS and Dysautonomia, and encourages everyone to be precise when describing their symptoms. This may be a huge source of misunderstanding between doctors and patients.
This website was created to inform, educate and brainstorm with fellow patients and doctors. The content should not be used as a substitute for professional medical advice, diagnosis or treatment. Readers are encouraged to confirm all information with other sources and their physicians. The creator of this site will not be liable for any direct, indirect, consequential, special, exemplary, or other damages arising from the use of this website.
Twitter: @prettyill
“Dr. Diana will always hold a very special place in my heart for her selfless devotion to helping everyone, not just the Ehlers-Danlos community. I hate to think what my life would be without her insight and guidance.”
-- Chris Gross
Thank you! I was asking about that because I believe the definition of dysautonomia suits me to a ‘T’ but am not 100% certain that I meet the specific criteria of POTS every time I stand or that I achieve the specific relief every time I sit back down. I don’t have a doctor helping me with this as of yet and am not comfortable using my heart rate watch to figure out, myself, whether or not I am a perfect fit for POTS. As for dysautonomia, my heart is randomly all over the place without explanation, my body is… Read more »
My friend, you sound just like us! Our thermostats are broken, right? If you have dysautonomia, I betcha’ you have POTS, but I wouldn’t get too hung up on the definitions. I could pass a “poor man’s tilt table test”, but on a regular TTT, my heart rate went from 75 to 162! Yikes. But my heart rate doesn’t bother me a bit. My loss of digestion, temperature control, organ function and ABILITY TO THINK, however, certainly got my attention. I think it is critical for us to share our stories, as this syndrome is so much more disabling than… Read more »
Dr Diana, is there anyway at all to do something to help those of us in Alabama? There simply is no help here. I have dysautonomia to ta T. Ihave multiple sclerosis as well. I understand there to be a coreclation between the door. I have a wonderul neuro who is trying to help me get into one clinic that exists but am having trouble getting into them; I live on d isability due to these health problems. I have no way to travel to see a doctor outside of my locale. Nor am I physically able to drive.that long… Read more »
Great information! I fully agree. My heart rate doesn’t bother me, other than making me short of breath and exhausted. But when I stand or get hot, the pain in my legs and feet (presumably from blood pooling) is life altering. And the difficulty eating much, plus nausea and constipation and trouble getting good sleep impair my ability to function. The eye symptoms make me scared to drive. My Johns Hopkins doctor put me on Mestinon to help control my POTS, and it has helped lower my heart rate. That said, my HR still jumps 50-66 BPM when I go… Read more »
Hi Baiba,Thank you for your kind words. We have all been where you are right now. And unfortunately, we go back to visit that dark place piacodeirlly, too! I’ve found that reaching out to others helps me (and you thought I was being nice! ha). I think, too, that once your baby is born, your thoughts will shift dramatically, but please be very vigilant for post-partum depression, OK?I would highly recommend seeing a geneticist who is experienced in diagnosing EDS. I don’t know of geneticists in the UK, but if you can’t find one, someone on EDNF.org may be able… Read more »
Diana, you should have your own talk show, you are so good at communicating to the camera! Thanks for clarifying these two conditions better.
WE have a real problem I am hoping you can help with. My daughter has a signifcant case of dysautonomia, underlying cause remains undefined. She does have JHS and +autoimmune markers. Her biggiest complaint now is her inability to focus visually – her pupils do not constrict/dialate normally and her focal pt changes constantly. She also has great difficulty reading and concentrating – thinking leaves her feeling disconnected – as though she done something ‘wrong’ with her brain. She is incredibly frustrated by this – it is not anxiety. She is on many meds, florinef, midodrine mestinon. Hoping with your… Read more »
How do I jojn clinical trials
I have not had a cardiologist yet- my neuro-who is experrt in parkinsons is not versed in dysautonomia- here in mayo eau claire wi suggestions
I so agree with you Dr. Diana! If it was only my heart rate rising. I have explained that to many a doctor, especially the cardiologist. I tried to explain it by saying, I know many people that have high blood pressure that walk around without even knowing they have high blood pressure. My problem is I have high heart rate and high blood pressure (hyper pots, I would say) and know exactly when it is high because I have all of these additional symptoms. The doctors are happy that the alpha and beta blockers they have prescribed to me… Read more »
I was diagnosed with Vasovagal Syncope last year, but was told it had nothing to do with my Ehlers Danlos Syndrome Hypermobility.
I just wondered if anybody knew more about this?
Aloha Dr. Diana: When I sit hunched over paperwork or the computer while on the bed or the floor, my lower back kills me. To try to get some relief I stand and stretch “reaching for the ceiling”, lay on my back, or lay on my stomach. Well when I do this, I feel like the blood is draining out of my head, my body goes limp, my hearing feels like I need to pop my ears as when you are at high elevations, and my vision starts to go black. It’s a weird feeling but I just deal with… Read more »
I have been recently diagnosed with dysautonomia I feel worse since my cardiologist put me on beta blockers today at the cardiologist my bp was low as usual but I also have tremors of my hands I get so cold I can feel it down in my bones and if I do get warmed up I feel like I’m radiating heat I feel dizzy all the time and when I stand I lose vision and it feels like I’m dropping and when I tell the cardiologist this he says that doesn’t sound like it goes with dysautonomia it’s like they… Read more »
I have been recently diagnosed with dysautonomia I feel worse since my cardiologist put me on beta blockers today at the cardiologist my bp was low as usual but I also have tremors of my hands I get so cold I can feel it down in my bones and if I do get warmed up I feel like I’m radiating heat I feel dizzy all the time and when I stand I lose vision and it feels like I’m dropping and when I tell the cardiologist this he says that doesn’t sound like it goes with dysautonomia it’s like they… Read more »
I have been recently diagnosed with dysautonomia I feel worse since my cardiologist put me on beta blockers today at the cardiologist my bp was low as usual but I also have tremors of my hands I get so cold I can feel it down in my bones and if I do get warmed up I feel like I’m radiating heat I feel dizzy all the time and when I stand I lose vision and it feels like I’m dropping and when I tell the cardiologist this he says that doesn’t sound like it goes with dysautonomia it’s like they… Read more »
I live on Vancouver Island I have yet to find a Dr. Who can explain what is happening to myself . I did have one internist tell me about five years ago that I have IST I. I thought he was just saying yes your heart rate is fast ,but no other explanation, ascot why, what to do, what is a prognosis, is there any treatment etc
I would love to know who it would be advisable to see for accurate diagnosis, neurologist , cardiologist , before I have to see a mortician ( kind of laughing) but nervous.
Dr. Diana
I would like to know which doctor you discuss POTS with, a primary or a rheumatolgist? I am suspecting POTS has been going on awhile, but now my systems are totally out of control. My temperature is all over the place, my blood pressure is up and down, I am having tremors and I feel like I want to cry for no reason. The list goes on and on. I do not have a hormones issue but I do have EDS Hypermobility (Type 3 with some Type 2 symptoms also.) Any advice would be greatly appreciated.
Wow, thank you. I am going thru the diagnostic process now and keep hearing that my heart rate isn’t high, nor do I exhibit precise orthostatic intolerance, so it must be something else. Long story short, I am 45 and have MVP and had open heart surgery 5 yrs ago. Always had a tad of dysautonomia. However, this august I started with massive headaches, and “spells” when I would lay down of adrenal going up through my chest with head rushes, palpitations, and dizziness. Sudden onset of severe, severe insomnia too with these spells. Now my heart rate is changed… Read more »
We have been dealing with this for just about two months. My 15 yr old son is going through this and doctors are now saying he has a “form” of POTS as one of his main complaints is Nausea any news or infer on this? We admitted him to hospital after no real hurry from the Neuro, GI doc and cardio. They prescribed Fludrocortisone and Amitrptylane to help. I recently just got compression sleeves for his calves. He cannot stand for too long and they did confirm his blood pressure drop at cardio. However, he is constantly nauseous won’t go… Read more »
Thank you! I’ve been diagnosed with Orthostatic Intolerance and the symptoms of POTS. On standing my pulse goes up 20 points and my BP goes down 30 points. However, my main challenge is digestion–when I eat I get stomach pain and my weight is 98#; my height is 5′ 8.5#. I also have severe numbing and tingling in my legs and feet at night that interferes with my sleep, which is poor regardless. I’m wondering how I can get help with these issues? I have a cardiologist here in San Diego who has given me suggestions for the POTS but… Read more »
I almost cried when I found this site! I have been dealing with pots/dysautonima since I was 9 years old. I am now 21,and I have to say normal daily things can be so difficult. I am currently in college,and I worry about what career I should choose since somedays I feel as though I could run a mile,and others walking across the room is difficult. I have had a strange symptom that I wasn’t able to describe fully,it feels as though my organs in my stomach area are not working fully or like the blood is being pulled from… Read more »
so i have been diagnosed with ms, then not then diagnosed, i have my lesions that have not changed but my symptoms get worse, i have started to have bouts where i think im literally having a heart attatck all my symptoms are consitant with primary progressive, but im reading this about dysautonomia and it sounds to a T like me, hot cold, no bowel or urine control, pain, nausea, frequent tiredness, an basically every single one. so is it possible to have dysautonomia when your lesions arent changing?
Just love your videos. Your information is great being that you know first hand what these people are going throw. Please keep posting more videos.
Hi my name is Lisa, I was diagnosed with Dysautonomia, POTS, Orthostatic Intolerance n Mast Cell Disorder almost 12 years ago. I am 37 n I’m completely disabled. When I first got sick i had my own home, a job, friends n a boyfriend. Now I’m living in the home I grew up in with my parents. Right before I got sick my sister passed away, she was Down Syndrome n had a very bad heart condition. It was so hard on my parents so I felt like I couldn’t tell them that their only other child was sick too.… Read more »
Hi I am 37 and was recently diagnoised with POTS. I had a tilt table test and that did not go so well. I am wondering how do you tell if you have dysautonomia? I had to have an ablation due to having some heart issues and so that is not such a big issue anymore however I still get very very dizzy and lightheaded a lot and I am now noticing that I am having some balance issues is that normal? I notice that when I stand up even for more than 3-4 minutes my legs swell and im… Read more »
Dear Dr. Diana, I just wanted to give you an idea of what my daughter and I have had to deal with over the years..my daughter first displaying symptoms when she was very young (8/9 in my opinion)and was faced with a lot of disbelief from her own family, her school, then even her friends stopped visiting or calling etc. What breaks my heart is that she sometimes starts to have such conflicted feelings when so many people cast her aside. She is now 30yrs and has full ME/CFS. She is in bed for the majority of the day but… Read more »