POTS and Dysautonomia : Associated symptoms
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- เผยแพร่เมื่อ 27 ส.ค. 2024
- In this video, i describe some of the commonest associated symptoms that patients with POTS and dysautonomia complain of. These include sleep disturbance, chronic pain and urological issues
Lots of bad symptoms 😞☹ pray God will heal many from this.
i know..:-( Thanks Charni!
Amen to that!
York Cardiology I have POTS at 62.. it’s weird because most are younger.. but I think I’ve had it a long time. It’s very disabling. 😞 Thanks for your insights. I’m learning more and more.
Thank you for spreading awareness ❤❤❤
Too many of us suffer too long.. I just read of a beautiful young girl taking her own life because she couldnt find help and the suffering was unbearable💔💔💔
It truly feals like your life has been stolen from you when it becomes severe
I’m in tears thank you so much for your videos I try and get help but no one hears me I have looked my self away from the world I’m not me anymore I get passed about left and right so I don’t feel I can open up anymore it’s like talking to a brick wall I have no life at the age of 30 . It’s a battle every day with my body and at night I really don’t know where to turn anymore but you’re videos has gave me some hope. Thank you so much 🙏🙏🙏💖💖💖💖💖💖💖💖💖💖
Dr Gupta, I cannot thank you enough for your interest, learning, understanding and, raising awareness, for so many people having to go through debilitating dysautonomia conditions. There are so many invisible illnesses that we struggle with and seeing light at the end of the tunnel with doctors like yourself who genuinely want to understand and help is the most amazing news we could hope for. I suffer from NMH (Neurally Mediated Hypotension) which falls under the Dysautonomia umbrella. What I appreciate the most from you and your videos is, being able to share these with the people around me to hopefully help them gain an understanding of what it is and, what is happening inside my brain and body which they aren’t able to see. There is so much more I would love to be able to put in to words about your understanding and compassion. Thank you for everything you are doing for us 🙏🏼
After over 20 yrs of suffering & being mostly bed bound (I’m 44 now), I just received Dysautonomia & POTS diagnosis from Cleveland Clinic. I was getting concerned that it was yet another wrong diagnosis until I just watched your video. I have every single symptom you mentioned plus many more. The most awful is the pain. It’s like I’m being tortured. Sometimes it’s body wide & sometimes it’s my upper half. I had two chiropractors diagnose me w Dysautonomia first - my neck is curved forward & problems all the way down my spine.
Thank you for this video.
I was recently diagnosed with POTS after a seemingly endless and exhausting search to find out why my body was behaving how it was including blacking out and concussions from the fall. I'm 37 and male and I feel like it's a disservice to not mention this condition for men as it may make someone searching for answers self diagnose that this is not what they are experiencing because they are male.
I suffer from every symptom you listed in this video and in the last 6 months it is rapidly progressing. I wish the US had passionate doctors learning more about POTS and our healthcare was universal because currently getting diagnosed / treated is near impossible. It required many hospitalizations and concussions for the right cardiologist to figure out what was going on. They nearly had put a pacemaker in me for no reason.
D C I had a cardiac ablation for supposed SVT. When all my symptoms came back even worse after my surgery, we realized I had POTS. I’m 31, it’s been 6 months since my surgery and I’ve never felt worse. It makes me wonder how many people undergo invasive cardiac procedures due to a misdiagnosis. I’ve had POTS for 11 years but it took over 10 years to get a diagnosis. I hope you can find some relief soon. Hang in there!
I'm male with POTS as well, caused by hypermobile type Ehlers Danlos syndrome. Perhaps I should be thankful that my first doctors never took my health issues seriously enough to even think about surgeries.
Hoping your POTS is being managed better by now. Mine is managed by Pyridostigmine during the day and Guanfacine and Doxazosin before bed. (The Doxazosin is mostly to treat my enlarged prostate, but it helps treat my POTS as well.) Sometimes it takes time to find what works best for each unique patient. Other POTS medications include Ivabradine, Clonidine, Atenolol, or Propranolol. I didn't do well on the beta blockers, but they can be very helpful for other POTS patients.
I just got diagnosed with POTS. Apparently I have had it for years . I had so many different symptoms. My general doctors would look at one or two symptoms and test for whatever..like lupus, fibromyalgia etc. except for fibromyalgia all my tests usually came back “Normal”. I had for a long time thought there was only 1 thing going on, not this disorder and that disorder and something else. Finally I this past month I started just believing that all this was in my head :(
Couple weeks ago my general sent me to a cardiologist after hearing palpitations. He knew I have had tachycardia for a while. I now have a diagnosis of POTS. I can just cry after researching Dysautonomia! I have had this for some years and now only finding out. So many things make so much sense now. Especially my poor sleeping that no doctor could “fix”.
I am now researching to learn all there is about this condition and how I can help myself!
If you suspect you might have this, keep fighting to find the answers! It might take a while but keep fighting the good fight! I almost gave up. I am glad I had support that cheered me on to keep fighting! God Bless!
Sorry you experienced all of that. Do you happen to have hyperflexible joints as well? That was the case with me, and it turned out that my POTS and all of my other health issues were caused by hypermobile type Ehlers Danlos syndrome.
I am so sorry and I know what you are going through because I have some symptoms of pots because when I stand up my heart rate goes up and my doctors have not got a clue but I won't give up some days are flare up and I am not giving because I would like some answers
I have hyperadrenergic POTS age 24. Took about 6 years to get a diagnosis. Extreme pain everywhere and in so many different ways but no explanation and fibromyalgia medications didn't help. Diazepam was the first medication that helped relieve pain, more so than a brief rx of low dose Vicodin did for me. It didn't resolve pain completely but it was a breakthrough with no explanation at the time. After a tilt table test identifying pots was made the diazepam controlling my sympathetic response and as a result my pain made more sense. Though no definitive explanation has been made to the correlation between this type of pain and sympathetic response, I'm hopeful new research into pots will unveil a better treatment for the pain and ultimately the autonomic dysfunction as a whole. My sister and I both have pots along with an unknown seizure disorder that complicated things for our doctors upon dx. I appeared to have a movement disorder along with shocks throughout my body but all neuro tests came back normal. Not knowing my sister's troubles, as we are quite different in age and location, I hadn't realized she has similar shocks and that the grand mals set off by repetitive noises when we lived together were ultimately ruled as rare seizure disorders associated with the pots due to her atypical complete conciousness during each episode, lack of EEG findings, but response to antiseizure medication. She had a paper written on her published very recently which you may be able to glean from. Let me know if you'd like it. Thanks Dr. for taking an interest in what is very real for some and unfortunately mostly misunderstood by all in 2018. Every bit of progress towards effective treatment is needed.
thank you Adam
Your videos are a blessing to me! I have IST, Ehlers Danlos - from associated dysautonomia. I have tried magnesium and it seems to help with my extra heart beats a fair amount. The ivabradine I am on has helped sooo much with my IST and hence helped me to exercise more on the bike. Would love a video about IST from you if you have time. It's no fun and scary having these symptoms...especially the ectopics after lunch-time after I eat etc.
I have a lot of issues from my Ehlers Danlos syndrome, too. I've heard great things about Ivabradine! My doctor put me on Mestinon, since it treats both POTS and gastroparesis/dysmotility, and also helps with fatigue and exercise intolerance. It's been a huge help!
This is helping me understand my condition so much more. Thank you. I have a lot of these associated symptoms
i have pots. i have to pee constantly and i'm constantly drinking water. it seems to be immediately peed out. i also have retention...i will go pee and get up and sit down and realize i still have to pee and have to go back to the bathroom. it doesn't hurt, but i have to lean forward and put pressure on my bladder to get it out, even though i have the urge to pee, it doesn't come out easy. it is very uncomfortable to have that feeling all day long and i get no sleep because i'm constantly going. i'm always in a dehydrated state. its like your last hour lost in the desert feeling like you will die if someone doesn't save you right then and there...all day every day for me. i didn't have diabetes when i was checked. i have had this since i was a teenager and i'm 34 now, i'm at my wits end!
I've recently been diagnosed with POTS and your videos have really helped me in understanding the condition. Thank you so much
This is spot on sadly. I'm suffering from almost all of these.
Thank you for this, makes you not feel insane
I struggle with finding information on only dysautonomia and understand POTS is the more common form of dysautonomia. I have all the symptoms, was diagnosed with dysautonomia. My heart rate on the day of my tilt test didn't go up 30 bpm but on most days it does in fact go up over 30 bpm, I faint, tachycardia, frequent urination, difficulty starting urination, numbness tingling, blood pooling etc. I also have PTSD which they are thinking maybe the chronic PTSD caused the dysautonomia but I also have pernicious anemia which went undiagnosed for many many years
I appreciate all of your videos knowledge! I hope I can find a doctor around here who understands dysautonomia or POTS, I have unfortunately not been able to find a doctor yet who doesn't ask "what is POTS?"
Have they tried you on low nightly dose Prazosin or Doxazosin to treat your PTSD, dysautonomia, and urination issues? If so, how did you respond to that?
I figured out my POTS myself. My cardiac doc's response was "Duh." Cardiology has no suggestions. They're just there to refill my beta blockers. Oh well. I've been studying like a maniac and made a stack of lifestyle changes, without my doctors' help. I've made dramatic improvements. Thanks for addressing POTS, doc. So many of us are DIY and need the guidance.
Love to hear what has worked for you!
Thank you again for this series
thanks Lauren!
Yes
Omg I'm so happy I came across your video I've been suffering with Pots for the pass 13 years I've been to so many Dr which just always say oh your Depress And put me in all kind of medication .I can't sleep I pass out a lot I don't have a normal life just because of my POTs I cannot drive I'm weak all the time along with pots I have fibromyalgia 😢 I try every thing nothing seems to help at all thank u thank u so much for letting ppl know about this I would like to connect with u and share my story to others about pots god bless n thanks again for educating others
Have they tried you on a nightly dose of Clonidine or Guanfacine for your PTSD and POTS? These two can address PTSD by telling the body not to release so much norepinephrine into circulation, which in turn calms the sympathetic nervous system ("fight or flight" response). This also makes Clonidine and Guanfacine highly effective at treating POTS - especially the hyperadrenergic type!
@@Dulcimerist Thank you for your reply wow i see my comment was 2 years ago. I did went to Clonidine and Guanfacine But nothing seems to work I am stills struggling, with POTS, I have been passing out so often. I am at a point where i just give up .
@@bophalgoo I recently started Mestinon for my POTS, and it has been a miracle. It has also fixed my digestive motility issues. Have they tried you on that? It's an old medication, but a new treatment option for dysautonomia.
Ivabradine is another good POTS medication.
It might take some tries to find what works best for you. I'm on Mestinon 60mg four times daily, and a nightly 0.2mg Clonidine; but my doctor gradually worked me up to that dose. What works for me might or might not work for others, since we are all different.
I so appreciate your valuable information.My son has suffered a lot.He is coping but it is stressful.He is a father of three and is quite resilient.However even though he tries yoga, every time I see him so tired, not a normal tiredness.He used to collapse, also the passing of water he has to go often.I think it is so very kind of you as you are an extremely clever and important doctor who is helping so much . My gratitude is ten fold. Thank you for video and blessings and greetings and hugs.xoxo
thank you Patricia.. You are always so kind and encouraging thank yoU!
York Cardiology You are most welcome.I value your expertise and to my life you have made a enormous difference.Many good blessings I send to you and your family.xoxo
Another great info video about POTS. Thank you so much for helping to get the information out there. I know your quoted stats in the video are from a paper on POTS in childhood so I'd like to add that another telltale sign for POTSie women that I am noticed in my work with them is that their orthostatic intolerance symptoms are MUCH worse at the beginning of and during their menses (periods). It seems pretty universal. Thanks
Thanks Paula..and yes definitely a very strong link with menses
I was just diagnosed with pots. I thought all this time these symptoms were a progression of the lupus I was diagnosed with.. now I wonder if it's been pots the while time. I am so relieved to finally have answers. I feel awful.
POTS is a syndrome which is a collection of symptoms. POTS can manifest in a variety of chronic diseases from Lupus to Mast cell disease. So technically Lupus is a more specific diagnosis and POTS is an added diagnosis. POTS is like saying there is an issue stemming from one process that is seen in all these diseases but that process is not entirely understood. This is mostly because the reason for the process can be different in each of the diseases. Also some people have POTS with no clear underlying disease.
I call it pee-arrhea when I just can’t stop having to pee all day-my POTS symptoms get so much worse. I try to keep my salt/potassium intake up to combat it but all the fluids I work so hard to drink just end up flushed down the toilet. It’s not every single day so clearly some internal or external factor is causing it. I just wish I knew what it was so I could have more good days.
thanks Darkblue
DarkBlue Matter check this out
stoppotsvirginia.blogspot.com/2012/08/hydration-salt-and-peeing-renin.html?m=1
There's more at work than just balancing electrolytes (which is hard enough some days lol, fellow POTSie here) I've only just read this recently myself so I don't really have any other resources on the subject, but I think it's starting to get some attention within the medical community, so hopefully there will be more info soon. Hope this was helpful, and good luck with the pee-arrhea!!
P.S. I'm totally stealing that term! (pee-arrhea) It's awesome!
Bri G thanks for sharing the article. That was really interesting. It certainly does feel like my body is doing the opposite of what I need it to do on those days.
All this time I've been treated for heart issues with all other symptoms ignored. I've had ' episodes' of this for years. Suddenly feeling 'unwell' palpitations, high bp, shortness of breath, sweating, dizziness, nausea, stomach pain, headache, and feeling like I might have a seizure or something. Been to the hospital in an ambulence more than once, fearing heart attack, and they find irregular heartbeat, but nothing else! Then, as mysteriously as it comes, it's goes, and I'm fine. These symptoms are DRAMATIC, and it's very frustrating to be told it's just menopause, or reflux, or anxiety! Most things have been ruled out. I've had an ablation and 2 cardioversions and still have issues. Magnesium has done more good than any heart meds. Now that I'm looking into this, and with your suggestions, I am getting some relief. When I feel symptoms coming on, I drink a huge glass of water, and this seems go relieve them. I am also sleeping upright, which has really improved the night sweats and fast heart rate at night, so Im sleeping better. I am also figuring out triggers. Lack of sleep, for sure is one. You also identified this viscous cycle. It seems the only way to diagnose this is a "tilt test."
I really need a diagnosis! You are SO GOOD!!! Genius, and I'm sure that's literal. Thanks SO MUCH!!!
Thank you for your informative videos doctor. Could you do a video on orthostatic hypotension please? It seems to be somewhat related, but there's a lot less information on it out there.
The vend diagram for POTS, ME/CFS, FND and dysautonomia is interesting.
Dr Gupta do you think hyperadrenergic pots is a different entity from " normal " pots ? I have postural hypertension along with the fast heart rate . I get a heat rising up when I stand up associated with warm skin which then goes ice cold and severe drenching sweats where my hair is soaked in minutes .I have no choice but to sit down . My bp has reached 250/146 with a pulse of 140 + . . These episodes are severely disabling and I am now dreading summer .
Have they tried you on a nightly dose of Clonidine to treat your excessive sweating and POTS? It works by telling the body not to release so much norepinephrine into circulation, which in turn calms the sympathetic nervous system ("fight or flight" response). This also makes Clonidine highly effective at treating POTS - especially the hyperadrenergic type!
Try Himalayan rock salt - full of minerals . Don't take the highly processed stuff as most minerals have been removed ..
I have been watching all your videos on POTS. My daughter and I have have both been very sick for years now. I was told 5 days ago that my team of doctors think I have Dysautonomia. My question to you is can this run in families? See my mom suffers as well from many of the same symptoms and my sister did to until she died last year of cardiac arrest. She was 37. I have a pacemaker as I go from bradycardia to tachycardia. Right now my daughter and I are researching all the info we can. I would love to know what you think of POTS running in families.
Yes, familial dysautonomia exists. Also this sounds extreme, but if you’ve lived in the same house together for years have it checked for mold.
Does one of the 13 types of Ehlers Danlos syndrome run in your family? Or Marfan syndrome, or Loeys-Dietz syndrome? All of these can cause POTS, cardiac issues, and other health issues.
I was told by my primary care doctor that I have dysautonomia. I’m looking into seeing a neurologist. Should I also see a cardiologist?
Yes see a cardiologist.
Some cardiologists aren't well-versed on dysautonomia, so having a cardiologist and neurologist work together is your best bet to cover both aspects of it.
Hi Dr Gupta thank you so much for your videos! I wish more doctors were familiar with this. I've had these symptoms for over a year and had no answers which meant to treatment or way of moving forward and this sadly caused me to lose my job. I recently saw an ME specialist who said she thinks that I have POTS and dysautonomia. After watching your videos I am sure I have dysautonomia and POTS. I live in West Yorkshire. Can I get reffered to see you on the NHS or do I need a private appointment? I feel like it would really help me to get a diagnosis and have validity. I don't have Facebook so I couldn't find out when your event is. I think I may have missed it.
hi carly its tomorrow in york...10-4 pm bar convent 28/4/2018
Interesting I didn’t hear fatigue on the symptom list
Hello, please can you do a video on Dysautonomia (with brachycardia and triggering PNS) and maybe also its links to covid19? I would be hugely grateful for your views and thoughts, I dont have POTS but I have a lot of symptoms for Dysautonomia following having covid 3 years ago
Great video
thank you!!!
My father fought in Iraq and was blown up multiple times and we are in the process of figuring out which dysautonomia he has. It doesn’t help with the ptsd making the symptoms a lot worse.
Did he get Gulf War Syndrome? If so, Mestinon to treat his dysautonomia might be worth checking into.
Thank you!!!
Ahhh.... I always have muscle ache, nausea, headache and extreme tiredness.
If I just take rest and sleep really long time I feel better.
Hello doctor sanjay. Can you do a brief video on sinus arrhythmia and why It happens/what causes it?. thank you.
yes deffo..illl get working on it!
Thank you very much. Only if more doctors we're like you!.
My 24 year old daughter has it since 12 years old... she suffers every day.... her life is horrible
Hi and thank you once more for your work! I recently watched a video on salt and they said it might help with POTS. I dont suffer from POTS but just wanted to share, that maybe this might help?
Salt helps retain water so yes definitely
York Cardiology what about caffeine and Nicotine?
I am not the doctor but I think caffeine might not be so helpful because it deprives the body of salt and water. I read that you loose up to one teaspoon of salt if you drink 4 cups of coffee... I never smoked so I dont know about that :-)
Quite interesting , I certainly dont suffer from full spectrum POTS but I often feel dizzy on standing ( HR climbs and falls normally). Was reading James DiNicolantanio's somewhat controversial book (The salt fix) and added a teaspoon of salt to my whole food diet, noted this basically cured the problem and also raised my quite low (15-30) RMSSD heart rate variability about 10 points(daily values averaged over 3 weeks). Sadly it also raised my blood pressure about 10 points, so for now im doing half teaspoon top ups only when I feel symptoms. Too early to tell how thats going to be honest
Hello how can I schedule a consultation with you I’ve been suffering for three months then on bed rest high blood pressure is sometimes low I am exhausted no one seems to know what is wrong with me I Cry myself to sleep every day I feel like someone is on top of me pushing me down for
Hello doctor can i ask? I have tachycardia, plus my BP was always at 130 but they cannot see anything. I have been on different tests. I'm in beta blockers for 2 years now. I want to know how could it be
Matthew Warren i forgot the dyastolic pressure mesurement. It was a long time ago.
I first noticed that my heart is beating fast and hard when i was in grade school and first noticed i was having chest pains when i get tired when i was in highschool.
Matthew Warren i've had holter monitor before and my heart rate recorded high numbers.. right now i'm on beta blockers so my heart rate and bp are normal around 110 /78 i just wanted to know if i can stop taking medication now that my bp and heart rate are becoming normal. Or its a life time thing to take beta blockers.
Matthew Warren i see. I've been trying to find out what really causes my tachycardia i also had fine tremors + my hands and feet where always cold.
Matthew Warren i know youre not a doctor. :) i'm looking into different posibilies. Whether its stress related or not. Thanks for the insights
Thank you, newly Dx s/p COVID. I’m creating videos to help as well. I appreciate your expertise.
Hey i belive I been having alot these symptoms, but its not all the time whenever i feel bad or tough dizzy ect ect when I do eventually go get checked my heart rate normal and fine its like comes in waves not sure if it is pots or something similar could you advice
Unreal. Everything is falling into place. Time for another trip to England.
These are all true and great and all but what about the ones that are really annoying Not that these aren’t but like when you go to say something and you can’t get it out like word retrieval problems.. my boyfriend doesn’t have a tolerance for that. He thinks that I do it on purpose and I don’t he doesn’t realize that it is part of all of this great big ball of wastebasket diagnoses that I have. The fibromyalgia, the pots, the chronic fatigue he doesn’t understand that.. sounds like it’s time for me to get a new boyfriend