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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.
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 seriously unable to regulate temperature, it also seems to randomly ‘shut down’ on me in various ways. All sorts of out of sync things have been occurring to me with regards to the basic functions of my body (basic functions that just about everyone takes for granted) for quite awhile now. Yes, I cannot stay upright (as in POTS) but I am not certain that my heart rate is specific in its pattern. Yes, it raises by 30 bpm but it also seems to rise and fall with less predictability than what I understand of POTS. I can feel the blood draining from various parts of my body. I’m lightheaded and nauseous, dizzy, poor balance and forced to sit. I think my heart rate may begin to drop before I’m able to sit (but am not 100% right now). My heart rate also seems to randomly drop sharply while I’m in a seated position, it can rise also for no reason and I sweat when this happens. Very weird, I know. No I am not ‘thinking about something bad’. I can tell a distinct diff between my body doing this on its own and when I am struggling with anxiety. What I experience seems to be a pretty severely dysregulated autonomic nervous system but I hadn’t been completely positive about POTS and felt that my experience might be more random and less predictable. I do have all of the other listed issues that fall under dysautonomia. Still, I wasn’t completely certain about POTS. Is the standard definition of POTS a guarantee with dysautonomia? Can you have one without the other?
I would definitely say I have dysautonomia, not just POTS. I have been diagnosed with POTS by the Tilt Table Test, but do not check my rate at home so can’t say that it does or doesn’t happen every time I stand up. My question is: What type of specialist is best to manage dysautonomia?
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 seriously unable to regulate temperature, it also seems to randomly ‘shut down’ on me in various ways. All sorts of out of sync things have been occurring to me with regards to the basic functions of my body (basic functions that just about everyone takes for granted) for quite awhile now. Is the standard definition of POTS a guarantee with dysautonomia? Can you have one without the other?
My friend, I can relate personally to EVERYTHING you say. EVERYTHING. Everything is just plain out of wack, right? I could pass a “poor man’s tilt table test”, but I flunked the regular one big time. Looking at all of your co-morbid conditions, they align with my research, too. I believe that if you have dysautonomia (trust me, you do), you will likely have POTS, but your symptoms will vary all over the map. There are a multitude of reasons for this. Because POTS is something doctors can MEASURE, I think focus has gone that direction. I don’t think that helps us, as our heart rate and BP changes are only a small part of what our bodies are going through. Hence the focus on “dysautonomia”. I wouldn’t get too hung up on the technicalities of “POTS”, frankly. As a researcher, I strongly believe that “dysautonomia” is a better description of this syndrome and opens up the discussion for the TRUE, UNDERLYING CAUSE of our presentation. And as you already know (I’m so sorry), without proper treatment, our condition doesn’t stop at dysautonomia! Yikes. I’m on it, my friends. Hang in. 😉 Diana
I would definitely say I have dysautonomia, not just POTS. I have been diagnosed with POTS by the Tilt Table Test, but do not check my rate at home so can’t say that it does or doesn’t happen every time I stand up. My question is: What type of specialist is best to manage dysautonomia?
The question of the year! If you find someone, please let us know! Personally, I had to figure it out myself, after dealing with a gazillion doctors who just “didn’t get it”. I can’t blame them. I, too, would have never figured this out if I hadn’t lived through it (and watched my kids get triggered, too). Between you, me and the wall, Mayo was great in diagnosing “POTS”, but not with EDS, or underlying causes. That’s why “The Driscoll Theory” was born, my friend, after years of research, trial and error and comparing notes with many others. I’ve moved beyond it, now, and am bringing in other doctors to help publish much of this. I wanted to get The Driscoll Theory out to everyone in advance of the clinical trials and publications, because there is so much needless suffering occurring. Now it is time to move to scientific journals for credibility and to take it to the next level. Sound good? 🙂 Diana
Absolutely, I have a diagnosis of POTS via tilt testing but it’s so much more
than a jump in heart rate. My symptoms vary hugely from day to day,hour
to hour and involve HR,BP,headache,brain pressure,dizziness,poor balance
nausea,FATIGUE,reflux,”UTIs”,digestive stuff,brain fog,feelings of impending
doom etc so yes there’s more out of whack than heart rate. On a rare good
day my HR can be pretty normal and I would probably not be diagnosed with POTS.
“Dysautonomia” describes the wider range of systems affected and the fluctuation
of symptoms better than POTS.Thank You for the wonderful work you are doing, looking
forward to answers and feeling better!Absolutely, I have a diagnosis of POTS via tilt testing but it’s so much more
than a jump in heart rate. My symptoms vary hugely from day to day,hour
to hour and involve HR,BP,headache,brain pressure,dizziness,poor balance
nausea,FATIGUE,reflux,”UTIs”,digestive stuff,brain fog,feelings of impending
doom etc so yes there’s more out of whack than heart rate. On a rare good
day my HR can be pretty normal and I would probably not be diagnosed with POTS.
“Dysautonomia” describes the wider range of systems affected and the fluctuation
of symptoms better than POTS.Thank You for the wonderful work you are doing, looking
forward to answers and feeling better!Hi DizzyMe, YES! EXACTLY! And unfortunately, our dominoes can continue to fall, one after the other. I’m making a symptom checklist for everyone — for your use and for research/publication. I humbly believe I know what’s going on here, and my “potential symptoms” list is now at around 150! Most doctors would never believe we could have so many, seemingly unrelated symptoms. Amazingly, they ARE all related. It’s just not obvious to the casual observer, or the uninitiated. We’ll be bringing the truth to light. Hang in, my friends. 🙂 Diana
Hi Dr. Diana,
I can’t believe you just said that. I can’t tell you how many times I’ve cried to friends saying, “How the heck am I supposed to list 157 symptoms!”. I never counted, not by a longshot. I just cannot believe that you said 150 when, for some strange reason, I chose the number 157 and have used it more than once when expressing dismay. Anyway…
God bless you and I can’t wait to see your work published. I think I tried to get too involved over the last couple of days and there is something very wrong with my legs now. I think it’s circulation – and it feels like something is dreadfully wrong with my ‘tail’ (large mass of bones at base of spine). It’s been going on for the past few days now. I’ve been using heating pad but can’t get any warmth/circulation in my purplish legs (mostly from knee and below but the tops are pretty awful too). Then I ‘hit’ the Brookstone foot massager hoping to improve blood flow, a couple of times my legs began to hurt a lot – different hurt – and I noticed that the veins were no longer retracted but distended like worms, it burned, my eyes bothered me a lot, and reverted back to the former state of coldness. My 7 week old hypergranulated wound on my foot also weeps with more circulation. Heart rate changing up, yadda yadda.
The funny thing, is that the cold bottom portion of my body doesn’t match the normal temperature of the top – WITH THE EXCEPTION OF PERSPIRATION UNDER MY ARMS! What the heck!!! Really!! That’s 3 different, unsynchronized regions of my body – and that’s only for temperature!
My legs and back are awful so I’m going to refrain from writing. Sad, because the writing is theraputic for me. I’m not sure what else I’ve ‘done wrong’ this time so the only change is to stay away from typing? off computer? I always wonder what the heck I did to perpetuate this or that. Do I need to learn a new way to sit, stand, breathe! For crying out loud. This is just not good. Like a bafoon, I’ve gone out in HOT weather KNOWING that my heart would GO WILD – hoping that would increase my circulation! No, not a suicide mission – for less than 5 minutes – did it 3 times though. I’m like a clown -trying to restore circulation in my legs. Anyway, I hope I figure it out because I don’t have such a good feeling about it or maybe the next ‘layer of nightmare’ will come with such force that it attracts my attention away. It’s really bad right now though!!
You know, I did go through a time when I felt as though I might have AIDs, though knowing that there was no way I could’ve acquired it. Ever seen the movie, ‘And The Band Played On’? That’s what the my thought was based on. Multitudes of weird, impossible, horrible symptoms. Now, I think of the commercial where it says that “2 pills per day cost .40” and dream of being able to manage myself that way. Sick as it sounds, I have a sneakin suspicion that it might actually be much easier to have AIDs! Isn’t that horrible that I would think that? or is it?
Dr. Diana,
I appreciate your distinction between POTS and Dysautonomia. I think this is a very crucial step in getting better care. Heck, even getting the word out to docs about what EDS actually is and how it presents as well as all the “extras” that go with it would be super as well.My son was diagnosed by a Duke cardiologist (he was so very mean until he realized Austin really did have POTS!), using only the poor mans method. Austin was long gone before they finished the test. The doc seemed satisfied, but could only offer salt pills, stockings…and such which helped very little. He has so much more than POTS!!!!! I can’t agree with you more the desperate need EDSers have for docs to have the information.
I had to look up Dysautonomia!
Symptoms listed on Wikipedia….
Excessive fatigue
Excessive thirst (polydipsia)
Lightheadedness, dizziness or vertigo
Feelings of anxiety or panic (not mentally induced[citation needed])
Rapid heart rate or slow heart rate
Orthostatic hypotension, sometimes resulting in syncope[1] (fainting)Other symptoms frequently associated with dysautonomia include: Gastroparesis (delayed gastric emptying), headaches, pallor, malaise, facial flushing, salt cravings, mydriasis (abnormal dilation of the pupils), constipation, diarrhea, nausea, acid reflux, visual disturbances, orthostatic hypotension, numbness, nerve pain, trouble breathing, chest pains, in some cases loss of consciousness and seizures.[1] Dysautonomia can also present with orthostatic hypertension.[2] A full list of symptoms may be found at the Dysautonomia Information Network.[3]
Just starting here, I can say a big YES for Austin (and me too). I realize this is not likely the best list, but it was the first one I came across….and we have all of the issues.
Last night Austin came into our room about and hour after we all went to bed. He was having great difficulty breathing, he lay on our bed struggling to get each breath but doing a great job to remain as calm as possible so as not to aggravate the issue, he was very pale (he is very pale anyways…) and it was as if his rib cage or diaphragm were contracting…like spasms… I could feel his trunk go super hard on and off. Very weird! He looked like he was about to convulse at any moment with major twitches. I grabbed the heating pad and put it across his upper abdomen and lower ribs…and waited a few moments to see if this made it worse or better. He seemed to slowly, slowly relax until he was able to breathe again. Did the heat help? Or was it coming down already? I don’t know. But I tell you, I was one worried mother!
Thing is, I couldn’t even begin to explain this to our doc and hope for any real help!
So today I am in totally overwhelmed mode, mother hen worried sick I am not helping my son, and days and days and days go by while he suffers! I breaks my heart!He is a brilliant young man, who lives in his bedroom, and tries so hard every day to do the best he can for himself.
If only we knew what doc to go to, or where to start!
We are attending the Cincinnati EDF conference and hope to learn more. We were going to Frankenmuth to hear you Dr. Diana, but as you know, it was canceled. Hopefully next year we can attend that one.
Thank you Dr. Diana, for all you do!
Terri LynnHi Dr. Diana,
I can’t believe you just said that. I can’t tell you how many times I’ve cried to friends saying, “How the heck am I supposed to list 157 symptoms!”. I never counted, not by a longshot. I just cannot believe that you said 150 when, for some strange reason, I chose the number 157 and have used it more than once when expressing dismay. Anyway…
Sick as it sounds, I have a sneakin suspicion that it might actually be much easier to have AIDs! Isn’t that horrible that I would think that? or is it?Not “sick” at all! With AIDS, as frightening as it is, they have a fairly defined cocktail to take, and doctors have heard of AIDS! I remember wishing for a brain tumor or breast cancer! I think we’ve all been there. Questionnaire/ checklist of symptoms coming out soon! 🙂 Diana
Hi Terri,
Trouble is your doctor needs to know about your sons episode, it’s pretty bad when it affects your breathing. I fully understand your reluctance to go to see him though, I have that same problem about doctors! I have taken to writing summary letters now, which I either post in advance of my appointment, or take with me, that way they have all the information I need them to know (and it’s in my records, so they can’t say I never told them!) so it’s up to them to act upon it. There is so much to impart and so little opportunity to do it, so that was my solution. I think you wrote the episode very eloquently in your post and no-one would have difficulty in understanding it.I’ve had similar to your sons episode, albeit nothing like as severe and I think it probable that the heat worked. My limbs have gone into ‘cramp-like’ spasm episodes when my peripheral circulation turns right down (in order to maintain blood supply to my main organs) in fact, if I raise my leg above the height of my bum I can often induce one. I have also experienced similar in my trunk, certainly under my ribs and across my abdomen at times but only fleeting, it’s a bit like a ‘labour contraction’ but only over a small area. I get fasciculations too but they are less taught and intense.
I’m glad the poor little soul’s ok now. It’s bad enough having this as an adult, I dread to think how a poor little child deals with it.
Regards
Barbara
(UK)
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella (Oct 2002) Fully Blown Empty Sella (Oct 2004); Whiplash Associated Disorder (WAD); Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Vitamin D deficiency; Ehlers Danlos (EDS) type 111; and now Osteoarthritis! and oh, I forgot Arrhythmias – confirmed as runs of Bigeminy and Trigeminy.Dr. Diana,
I appreciate your distinction between POTS and Dysautonomia. I think this is a very crucial step in getting better care…
Last night Austin came into our room about and hour after we all went to bed. He was having great difficulty breathing, he lay on our bed struggling to get each breath but doing a great job to remain as calm as possible so as not to aggravate the issue, he was very pale (he is very pale anyways…) and it was as if his rib cage or diaphragm were contracting…like spasms… I could feel his trunk go super hard on and off.
Thank you Dr. Diana, for all you do!
Terri LynnHi Terri Lynn, This breaks my heart. Your son sounds so much like mine… I will tell you that difficulty breathing was my first symptom — and it was horrific. When it hit, NOTHING helped. Even in my sleep, my breathing was VERY rapid and shallow (scaring the pants off of my husband as he laid there counting my respirations). I knew if it was happening as I slept, it was likely neurological, and I took it from there. My son had episodes of difficulty breathing at age 3 or 4. Of course they assume asthma, but I knew they were missing something. If he feels like he’s spasming, your doctor will probably want to be sure he is getting a TON of magnesium. Even when our blood levels are “normal”, it is low in each of our cells. Epsom salt baths help with that, too. Over time, my improved, as did my son’s, and I can’t say if treating the low pressure hydrocephalus or the mast cell treatment, the combo of each, or just time helped. Has he tried any of those treatments yet?
I had every single one of the symptoms you listed, but believe I’ve figured out why we tend to slide downhill. I’m bringing in other researchers to get this out as fast as possible, as it can help not only our children and us, but so many other conditions as well.
Big hug, DianaHello Barbara,
Thank you for your help. I should let you know my son is 19 years old, so he is technically an adult. But yes, it scares him as well as me when he has these breathing issues. I did tell my doctor a year ago about an episode just like this….he just stares blankly and moves on. We did also share this with our new internist along with the long list of other symptoms, and she has sent us out to specialists, and so far each specialist has proven not to be willing to look beyond their already determined scope of practice. So we have given up on docs that don’t already know EDS or dysautomnia. I am waiting for the EDS conference and then hope to get a doctor referral for someone who already has experience in this area.I like your idea of posting them a letter first, that way they can read it before they enter the room! : )
Thanks again,
Terri LynnThank you for your response Dr. Diana,
Austin has not been seen for dysautonomia or mast cell disorder. Our docs would not even consider such things. Any family that presents with multiple issues that are odd, get the “look”. We have had the “look” many times. They would be very happy to put us all on depression/anxiety drugs and have done with it. Or so they think. Even though my son went through all the “proper protocol” for that and took every drug they asked him to take, with absolutely no effect (negative symptoms or positive). That is why I am waiting for the EDS conference and see if we can find a recommendation for a doc who could see him for this. I don’t have the strength to start from the bottom and work my way up anymore. I am 53, and I have been doing this all my life. So we will wait for August.I just finished reading your book, and Austin has just begun it. I learned much, but didn’t understand it all. So I am still working on watching all your videos. I have been wondering if I can just start Austin on the two antihistamines and see what the response is. Although he almost never responds to prescription drugs. We have had a number of P450’s done for him, and there seems to be evidence of this. But I think there is more to it.
And thank you for reminding me of the magnesium! I do have to work at getting him to take the baths, and the “Calm” product we use as well.
Anyways, off to do more research.
Hugs,
Terri LynnHello Barbara,
Thank you for your help. I should let you know my son is 19 years old, so he is technically an adult. But yes, it scares him as well as me when he has these breathing issues. I did tell my doctor a year ago about an episode just like this….he just stares blankly and moves on. We did also share this with our new internist along with the long list of other symptoms, and she has sent us out to specialists, and so far each specialist has proven not to be willing to look beyond their already determined scope of practice. So we have given up on docs that don’t already know EDS or dysautomnia. I am waiting for the EDS conference and then hope to get a doctor referral for someone who already has experience in this area.I like your idea of posting them a letter first, that way they can read it before they enter the room! : )
Thanks again,
Terri LynnHi Terri,
Oh, sorry about the age gaff! but never-the-less he’s still a young person, whose life-style is being governed by this ailment, it makes my heart sad. I at least have managed to have an enjoyable active and fruitful life prior to becoming symptomatic but when I see my grandson (who’s just coming up to 6 years old) struggling to play with the other kids, I weep inside.Something else I meant to pass on, about all of the weird symptoms we suffer, maybe video an episode and show that to the doc ? I’ve had to do that.
Regards
Barbara
(UK)
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