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Surviving and Thriving with Chronic Illness

Is it POTS or Dysautonomia?

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.
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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?

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 any published research is currently indicating. It’s time to tell the world (and get it published!). Big hug, Diana

I just love the way you’re communicating Dr. Diana! You’re setting a good example: mistakes are there to be looked at and learn from! If Alexander Fleming would have just discarded his contaminated petridishes, where would we be now?

Kind regards,
Kate

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 a nother iss out to get me on thisl
But have this, noticed that it is mentioned by some to have been trauma induced. This began for me following an MVA , that I dare not mention this bc I get accused of trying to get money ot of this, as I have litgation pending.  Was in a bad accident that seemed to kick this of.  if there is anything someone in Alabama can do, please let me knmow. Thank yu.

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 from laying down to standing first thing in the morning (no tilt-table, just an HR monitor). It only jumps 30-42 BPM later in the day. This is actually an improvement credited to the Mestinon, however I still have all of the POTS symptoms. The BIG difference I’ve noticed with this drug is that I’m now sweating and so am much more heat tolerant. I have erythromelalgia, and the drug has helped with that even more than with the heart rate.

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 to help you. The forums there can be helpful, but can also pull you down, so I try not to dwell there for long. There is always someone there going through whatever it is you are going through, and I’ve made friends there. We usually end up talking and emailing away from the message boards.So, an experienced geneticist, OK? And please let us know how it goes!Hang in, girl. You are not alone.Dr. Diana

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 background in optometry and experience with dysautonomia, you may be able to shed some light/suggestions?
many thanks

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 have brought heart rate and high blood pressure down, but tell me the other symptoms must be something else! Even though it certainly seems to be related.
The frustration of finding a medical professional that is willing to look at all the symptoms at once.
I am going to try and see if I get a different reaction if I use the term dysautonomia instead of hyper POTS

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 it. So while just watching your videos last night and this morning hunched over the computer, I just laid on my stomach with my feet up. The same weird thing happened as I was watching the above video. So I decided to do the “poor mans tilt test”. On my stomach my pulse was 78/60 and when I stood I couldn’t find my pulse for a while! It’s like my pulse went really weak or stopped and then when I could barely sense it again, it was very rapid but not as strong. It was 108/60! Is this familiar to you or anyone else?

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 don’t hear what I am saying I also have severe Stomach issues but the gastroenterologist can’t find the problem they make me feel like its no big deal and I am over exaggerating what do I do and does that mean I have pots or am I just being a big baby!?!

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 don’t hear what I am saying I also have severe Stomach issues but the gastroenterologist can’t find the problem they make me feel like its no big deal and I am over exaggerating what do I do and does that mean I have pots or am I just being a big baby!?!

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 don’t hear what I am saying I also have severe Stomach issues but the gastroenterologist can’t find the problem they make me feel like its no big deal and I am over exaggerating what do I do and does that mean I have pots or am I just being a big baby!?!

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 and I live with terrible ear pains, neck pains and pressure all over.  When I tilt my head or turn corners with the car, I get dizzy.  I have done so much with exercise to overcome any deficit caused by MVP and am sad most about the heart rhythm changes - mine are slower and erratic.  Anyway, permit me a quick question.  I also have a persistent IGM so mine may actually be a neuropathy or rheumy related which we are investigating.  However, I keep coming up in my research with Shy Drager and its scaring the pants off of me.  How do you know its plain old dysautonomia versus that?  I don’t have a problem with OI (Yet).  Most of my problems are sitting or laying down especially, not standing.  Because of my MVP and fact that I had vague symptoms that came and went 15 years ago and on and off since then, dr. is saying very highly unlikely SD (or MSA).  I know you can’t diagnose, just wanted to get your opinion!  Thanks again for all your work in this regard!

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 away and very tired all the time cannot sleep for long periods etc. Any thing else that you have heard that helps? I have tried salt tabs, salty snacks etc. etc. help mom with a teen that should be getting his drivers license!

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 not for the above symptoms. I’m wondering where I can turn for help? Thank you!!!

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 them..has this happen to anymore? Also a tip for anyone who is suffering poweraid (the sports drink) has been a huge help to me!

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?

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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.
When I first got sick I was living alone n figured I was just having bad headaches n I’d be able to take care of myself without worrying my parents but the whole thing kinda snowballed outta my control n before I knew it I was passing out. The first time I passed out I got up to use the bathroom n passed out. Another time I passed out in the tub n one night I got up to go to the kitchen n I passed out n when I woke up I had broken both my feet. I was scared n knew I had to tell my parents the truth.
Like I said it’s been going on 12 years n it took them about 9 years to diagnose me!! But its still not under control!!
In the beginning of last month I went to see yet another specialist n I hoped this doctor will be the ONE!!! I was wrong she just passed me off to another doctor that did the same!!
The doctor that I’m seeing now wants me to see a neurologist for my migraines a dermatologist for the blotches I get a gastroenterologist for my stomach n a cardiologist for my fast heart rate which is anywhere from 140-200+.
Personally I feel looking at my symptoms as if they are separate conditions isn’t going to do me any help!!
In the 12 years that I’ve been sick I’ve had numerous MRI, MRV, MRA n CT scans, I’ve had 14 spinal taps, 3 TTT which I failed all 3, ive had EEG’s, sleep study tests, over 80 Botox injections twice, occipital nerve burnings, occipital nerve cryoblation, occipital nerve phenol injections, occipital nerve stimulator put in and all of this did nothing to stop any of my symptoms!!
I have many symptoms n like u have said my fast heart rate along with passing out is the least of my worries! The migraine that I have had non stop for over 12 years is probably the worst symptom on a scale of q-10 on a good day it’s about a 6 or 7 but by the end of the day it’s a 9 or even a 10 n no doctor has been able to stop the cycle of the headache my other symptoms are vomiting, passing out, muscle fatigue, muscle spasms, chest pain, insomnia, hightned sensitivity to sounds, smells n sight, sensitivity to heat, sweating, very bad edema in my extremities n now my face, memory prblems, OCD like symptoms, hair loss…. there’s definitely more but I’m sure u got the idea or r going through it yourselves.
Imy in DESPERATE need of a doctor!!!! I live in NJ but will travel!!
If anyone can help I’d truly appreciate your help and advice!!
Sincerely,
Lisa

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 so tired I want to sit…I also have some major gastro issues as well as autoimmune disorder problems. Is it possible that it could be dysautonomia.

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