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@cmep37 - this is what happened in my case. When I first becme sick I was working 12 hour shifts on my feet, and I refused to see the necessity to stop working. After 2 years of that I could no longer stand, had to use a wheel chair and started passing out and taking autonomic seizures even WHILE SITTING. I am convinced that had I had the ability to stop working and rest for a long period and then slowly increase exercise I could have regained some of my abilities. But we'll never know, because I pushed myself too hard.

Do you mean this happens only in dysautonomia patients? Normally experiencing pain causes the BP to go UP.

Yesterday I had an appointment with my autonomic specialist. I informed him that, since onset of POTS 11 years ago, I have also been suffering from generalized joint pains and flare very badly when exposed to allergens, such as pollen or insect bites. I was seen by rheumo twice, each time with tons of labs to check AI, always negative except for ESR, WBC and RBC. I have been taking Prednisone twice, which makes my POTS worse. He explained to me that they now know that Dys is an auto-inflammatory disease, meaning it affects the innate immune system and the tests for autoimmunity will not show anything, since the adaptive immune system is an entire different entity. Here is a good article explaining the difference: Difference Between Innate and Adaptive Immunity | Compare the Difference Between Similar Terms The autoinflammatory part of POTS appears to have to do with cytokenes, mastcells and cholinergic reactions, and the labs commonly done for AI are not affected. He said that they had found compelling evidence of this and were ready to prove it by a major study but along cam COVID and shut it all down. Once they can do research again this will all evolve into a great breakthrough in finding a cure for POTS. Isn't that great? For now I will be taking Plaquenil, which should not only help with the constant inflammation but he claims it will help my POTS, especially the fatigue. A friend of mine on this forum takes it ( she is very similar to me in symptoms ) and she found good relief from it, especially with fatigue. Once it starts working I should be able to exercise more which in turn should improve many of the symptoms of POTS. I will not be able to start it until January ( an eyexam is needed before starting ) and I was told it takes about 4-6 weeks before any improvement is seen, but I will come back to this post and update how things go. I am just hopeful about the good news that better treatment is on the horizon!!! He said with this development they not only will be able to use the drugs they already have but - more importantly - can develop new drugs to help this disease. Hurray!!!!!

@CallieAndToby22 @KiminOrlando - I had to fire several ignorant docs that told me : "You are just gonna keep fainting, there is nothing to be done, it is the common faint you have", " the symptoms you have clearly stem from hysteria", " you cannot tell when you have high BP, therefore you make this up" and, my favorite: " you have a very vivid imagination". And there are even more ... 😬 I had two docs during those years that were my rock: my PCP, that did not know beans about POTS but was willing to stay the course and help me, symptom by symptom: and my current cardiologist ( not my autonomic specialist ) who - in the very beginning - admitted that he does not know anything about POTS and therefore does not feel comfortable to treat me but supported an autonomic specialists referral. Since then he has really informed himself about POTS and now treats several other POTS patients. I believe that the common denominator in this is that most docs would have to rethink their entire approach to medicine in order to admit that dysautonomia is a real thing. Forever they were under the impression that unexplainable symptoms in the absence of abnormal testing are psychosomatic. And now, suddenly, there is a whole new way to look at this, that explains the physical mechanism behind these symptoms and that they are a real disorder. There is so much to know about dysautonomia that belies what they have been practicing that they would rather deny this disease than being open to new findings. A good physician follows the oath that - most importantly - states DO NO HARM. Not taking a patient serious, ignoring symptoms because they do not understand them and dismissing seriously ill patients is clearly a breech of this oath. We just have to keep looking for our prince. I found mine, I have a wonderful team of docs that all work with me and for me and that NEVER ignore any problems I have. But it took a long time to get them, so my best advice is: keep looking. I think he is right by saying this, and it may be his way of telling you that he does not know how to help you. His responsibility then would be to refer you to someone who can. I would call the office and ask to talk to the person that said you don;t have dysautonomia and confront this person. If they make a note in your record stating that you do not have dysautonomia it can add confusion and also support other bad docs that want to believe that dysautonomia does not exist. Ask what evidence brought them to this conslusion, even if you have to request another appointment. Do not just simply take it and have them write you an untrue - and potentially harmful - report that states you do not have what you clearly have. I am sorry this happened to you again!

Hi @MTRJ75 - well, I know what you mean about exercise. I have reached the max benefit I can get from meds I have tried so far and that is why I am on IV fluids weekly. My POTS has greatly improved insofar that I barely faint or have seizures, my BP has stabilized and palpitations have ( for the most part ) stopped, fatigue is tolerable. However - I continue to have orthostatic and exercise intolerance to the degree that most exercise ROBS me of energy and I need bedrest if I do too much - or the wrong - exercise. I had a telemedicine appointment with my autonomic specialist today and he scolded me for not exercising enough. Well - compared to what I could do 2 years ago, before the IV fluids, I am VERY active! I do light housework etc every day, I walk 5-10 minutes at a time every day and I use my rowing machine often ( my current ability is 20 reps 2-3 times a day. To me that is pretty good. I also do stretching. Some days I cannot do anything. What I have found is many exercises are not good for me, and aerobic exercise ( as is recommended ) depends highly on the temperature. In the summer I can only tolerate being outside in the early morning, and in the winter I can only go outside when the sun is shining and it is above freezing. I had to laugh about this one 😂! I think what they mean is when you have POTS the exercise intolerance will keep you from exercising, which in turn will make the orthostatic intolerance worse. Therefore it IS important to exercise to tolerance, and to slowly increase exercise. Also - as you know regular exercise helps the heart and circulation because getting our HR up with exercise promotes good circulation - which we POTSies lack. As a result our heart does not have to beat so hard because the exercise helps to circulate. We will develop muscles that promote good circualtion as well, and BP is more stable.

Dear @Farah - Oh my, what a mess you are enduring! I am so sorry! --- I am glad you are seeing a neurologist, the twitching sounds like something a neurologist would be checking into. I am not sure if the neurologist would order a TTT - that is usually done by a cardiologist. With your elevated HR and BP I definitely would be asking for one. With your symptoms it is appropriate. Since you have elevated BP upon standing often they will check your neurotransmitters during the TTT, to determine of you have elevated norepinephrine levels ( if so it would be hyperadrenergic POTS ). I have HPOTS and - although I had symptoms off and on throughout my life - giving birth to my daughter triggered it for me. I also had post partum depression, although mild, and terrible fatigue, just like you. My HR and BP would skyrocket with standing. It took 2 years and 5 cardiologists and 1 neurologist before I finally saw a specialist who diagnosed me with HPOTS. Prior to seeing him I had tons of tests, including 2 TTT's ( confirmed NCS and POTS ). My norepinephrine levels were sky high, therefore the HPOTS diagnosis. Did anyone recommend increasing salt and fluid intake and wearing compression hose? That is usually the first - and very important - treatment. Watch for your BP though! I have high BP but still eat tons of salt. I am surprised she would order the propanolol as needed. And I also would not so easily accept the anxiety diagnosis. So many of us get that diagnosis slapped on because we have the physical symptoms of it and all test are usually normal. That is why you should ask for a TTT - that would differentiate from anxiety. You seem to fit the criteria for POTS: symptoms longer than 6 months, tachycardia greater than 30 BPM increase upon standing in the absence of a drop in BP. Also - pregnancy and childbirth are known triggers for POTS. IBS and other GI symptoms are common in POTS, since the ANS controls the cardiovascular system as well as the GI system. The problem with POTS is that the symptoms are similar to those of anxiety - yet they are not caused by anxiety. Actually the anxiety FOLLOWS the symptoms, meaning we get scared by the symptoms. If elevated adrenaline is at play then we also get overly excited, which also mimicks anxiety. So as you see - a inexperienced physician can easily brush the symptoms of POTS off onto anxiety. But that will not help you, IF it is POTS ( determined by TTT ) then there are many different meds that can be tried - below is a link to articles from our Information Resources tab that may be helpful to you POTS What Helps? - POTS - Dysautonomia Information Network (DINET) How is POTS Diagnosed? - POTS - Dysautonomia Information Network (DINET) Best of luck, please keep us posted how your neurology appointment went, and if you will be getting a TTT.

@adejuliannie I am sorry to butt in, since your question was addressed to DizzyGirls, but I too have autonomic seizures and take the non-selective beta blocker Carvelidol. It helps a lot with many of the symptoms. I tried other ones ( Metoprolol, Bisoprolol, Propanolol ) but only the Carvelidol made a considerable difference. However - it did not help with the seizures. My seizures are caused by excessive sympathetic overcompensation causing dumping of adrenaline, which in turn constricts all of the blood vessels what then stops circulation to the brain. What helps me there is a calcium channel blocker ( Diltiazem ) and regular IV fluids - one dilates the vessels and the other keeps them dilated ). Hopefully this is helpful to you.

Dear @Rachelexis13 - welcome to this forum! However - I am sad to hear you are so unwell. There are several things I would like to address regarding your post: - yes, the symptoms you describe DO sound like POTS. The fact that all tests are normal, you respond well to IV fluids and appear upon standing all point in the POTS direction. - you mention that the ER docs the first time said they thought it was orthostatic hypotension: WAS your BP low? You mention the high HR but did not mention what your BP was at the time. - The criteria for a POTS diagnosis are an increase in HR of 30 BPM or more WITHOUT drop in BP within the first 10 minutes of standing ( sustained ) and presence of symptoms at least 6 months ( you are not there yet ). - I do not see a need to change your cardiologist at this time. In order to diagnose POTS she would have to order a Tilt Table Test ( TTT ), which can be done at any major hospital. But since your symptoms are so recent it sounds reasonable to wait until you see her in January. The advice she gave you to increase salt and fluid intake as well as wearing compression hose is correct, and helps many people who first experience symptoms. I would be absolutely diligent in following her advice in that regard! Any autonomic specialist would want you to have symptoms for at least 6 months and have a TTT done before seeing you, and most of the good ones have very long waiting lists. The fact that your cardiologist suspects POTS is actually very encouraging! - You mention that you will graduate from college very soon and that you work - that could point towards a possible trigger for your symptoms. Both work and school can cause considerable stress on your body, which can cause symptoms like you are experiencing. That does not mean it is all in your head - nothing would be further from the truth. It simply means that the stress you may experience currently can be the trigger for your ANS to overreact. What helps there is taking more rest periods, not overdoing things and cutting back on some of the stress ( if you graduate soon school will be over, but also you may need to take a break from working ). Spending your days resting and doing regular exercises ( 30 minutes aerobic exercise 30 minutes a day every other day is recommended for POTS ) may help. When I first developed POTS I ignored the symptoms and pushed through - that made it a lot worse. - If you do not improve despite doing all these measures and finishing college your cardiologist may consider a beta blocker or other medication to help you with your symptoms. I hope this helps. Please check our information resources under that tab on the top ribbon of this web site - there are many helpful articles. Best fo Luck with your graduation - and please let us know how things are going for you!!! Stay strong!

@Rexie - I have hypertension from HPOTS - though well controlled with meds and IV fluids. I use lavender essential oil a lot and for me it really helps calm things down. If I have to leave the house for any reason I put a few drops on a lava-bead bracelet, and at night I put a few drops onto beads in a little dish next to my bed.

@Knellie - yes, symptoms typically wax and wane, most of us have good and bad times. I cannot always tell what brings on a time that I am unstable - other times I can exactly tell when it happens. I believe anyone with POTS, NCS or related dysautonomias should follow the water/salt/compression regime every day. You may not be able to tell but it does make a difference. Regarding vasopressor agents - I suffer from excessive vasoconstriction from too much sympathetic activity, so vasopressors would be contraindicated for me, I operate better with anything that dilates, particularly calcium channel blockers. I also take a Beta blocker, SSRI, Ritalin. In the first several years after onset or symptoms I tried many other meds that are used in the treatment of dysautonomia but this current regime works best for me. Unfortunately most of us have to go with trial-and-error approach - what works for one does not work for another. But once you pinpoint the mechanism behind your symptoms the medication regime becomes more clear.

@Knellie - I am sorry to hear that you are unwell. To answer your question: - Yes, all of the symptoms you describe sound pretty common for POTS. The stress from taking an exam, any exercise and showring all can trigger POTS symptoms. Tachycardia, palpitations, headaches, blood pounding - all pretty typical. Are you increasing salt and fluids and wearing compression hose? These measures are what you can do for yourelf to prevent these symptoms, other than medication ( which it sounds as though you might benefit from meds as well ). I am not sure why "without the T -" --- obviously you have tachycardia as you mention above?

@merkat30 - I took Clonidine many years ago and had to stop after 3 days. I was extremely sedated from it and during the third night I developed terrible supine hypertension, anxiety and feeling of impending doom. I had to wean off it quickly because I was so ill from it. I will never, ever take that again!

I would like to add to @targs66 post that hydrocortisone topical cream is usually used for skin problems and - if used for other reasons - the advice of a physician should be consulted. I personally have not ever heard of using the cream as described above, and am not sure if it would be helpful. Here is a link on how to use the cream correctly and what to look out for: Hydrocortisone topical Uses, Side Effects & Warnings - Drugs.com Again - please check with your physician before trying this!

Oh my @Derek1987 - what a terrible thing to do to you! I have HPOTS as well and am getting palpitations just thinking about you in that spinning chair! Certainly that set off an adrenaline surge!!! --- I have seizures when the doctor flushes out my ears, I think getting dizzy like that is a common reaction to that procedure. --- Regarding the tonsillectomy: yes, it certainly will be a tough thing for your POTS, and I have stayed in hospital after surgeries because of POTS. As long as they give you IV fluids your POTS should be well controlled, at least it always was for me after surgeries. Pain control and being able to drink fluids may be difficult at first. But removing the cause of constant inflammation on your body ( tonsils are known to be very toxic to the body when inflamed ) could very much improve your POTS as well. The amount of stress chronic inflammation causes is considerable, and - once the recovery is over - you may feel so much better, and even regain some strength and stamina! One thing I experience positively whenever in hospital is that I feel less anxious. Everything is monitored, you are never alone, there is nothing you have to do other than get better, and - as I said - the IV fluids really give a boost and eliminate most of the symptoms. Of course it is very scary to think about the surgery - but that will be over quickly and afterwards I think you will feel better. Good luck!

@MTRJ75 - I think that finding a way to - even temporarily - not caring about the symptoms of POTS helps to overcome the anxiety that comes with POTS. We can actually cripple ourselves by constantly being afraid of setting off symptoms. For example: I know you suffer from palpitations and their presence causes you a considerable amount of concern. Therefore you will react to them by activating the ANS stress response, making everything worse. I also feel like this often b/c triggers can cause me to go into seizures and overdoing things can cause inability to be active at all. Therefore I avoid anything that "could" cause my symptoms, resulting in - often - unnecessary avoidance of activities, denying myself things that I could otherwise enjoy and - as a natural result - anxiety and depression. By going on this ride I simply put all of that aside, decided that I will do as I please for once, not caring about anything that could/would/might follow. And the resulting setback in POTS symptoms was not at all bad in comparison to the joy I gained. Having said that - I am a stern advocate to listening to our bodies, avoiding triggers and generally living within our limits. That is the only way I have been able to function at all. But there is a difference between living in fear of POTS or living WITH POTS. If I expect a flare from an activity and prepare myself for it - then there is really nothing I have to be concerned about!

For the past years I have had one big wish: to ride a horse again. I grew up riding but since onset of POTS 11 years ago I have not been able to. Most of being around horses is done standing, so even just getting ready would throw me into a tail spin. Well, Saturday was a beautiful fall day, I had just had my IV fluids the day before and I felt strong, well and - reckless! So my daughter and I drove to her stable in VA ( she does show jumping there ) and while she readied my horse I sat waiting. Riding is actually a POTS-friendly exercise IMO, since you sit and other than using your leg - and back muscles you are relaxed. I cannot even explain to all of you how wonderful it was to be back in the saddle! I swear the horse enjoyed it as much as me! And we rode up an old, inactive volcano from which we had the most incredible view of the western VA highlands .. vulchers were circling directly over over our heads, that's how high we were, the sky was clear and we could see miles and miles. I had not been out in the weather like that for a long time, since I am mostly homebound. Feeling the wind and the sun hitting me, and the strength of the horse beneath me, forgetting about what could happen for once ... or better yet: NOT CARING about what could happen for once ... this is what I call a victory! Of course I had to pay for it, of course have I been in bed ever since, and of course will it now take a few weeks to get back to normal. But it was so worth it! The saddest thing about suffering from a chronic and disabling condition I find to be the loss of memories we create. We are so often confined to the inside that we rarely allow ourselves to experience the simple pleasure of the elements or even nature. As a result our world shrinks and we deny ourselves the cheapest, simplest, most natural gift there is: living. I don't mean surviving, circulating blood or functioning in our roles. I mean REALLY being alive, breathing air, feeling, seeing, hearing, exposing ourselves to whatever may happen. Taking a risk, being brave, not caring for once. In other words - giving our limitations the finger! I am incredibly thankful for this ride and am hoping to be able to go again. If you have something you miss, that you think if only you could do it one more time, that you are willing to risk a flare of symptoms or a set back in your abilities for - if it is something that is at all possible then consider this: JUST DO IT!!!!!!!

Hello @FaintingUnicorn - and welcome to this forum! --- I was seen by Vandy 10 years ago and back then my referral went relatively quick ( and of course we had no COVID ..). But I find 5 months waiting without calls to you or your cardiologist being returned unusual and personally would keep trying to find out what is going on. There should be a referral specialist that could answer your question regarding the status of your referral. It is not unreasonable after this time to ask about the status, so if you get a rude or impatient response it is on them. They should have a general idea of how long their waiting list is for new patients. I know that in many cases patients have to wait for a year or longer. My specialist takes 18 months for new patients, but people get informed of this when the referral gets requested. It should be common practice for Vandy to let you know this as well. I hope you will hear from them soon, and I wish you good luck!

@Delta - rainstorms actually have a severe effect on my POTS, even without the hail. Barometric pressure changes cause this phenomenon, I get the Fight-or-Flight response as soon as the sky starts to darken and the leaves on the tress turn to another direction ( sign of imminent rain or wind ). @KiminOrlando so sorry! I know the commercial and sympathize with the urge to cry 😭 -- I am a known cry-baby and whenever I watch a movie that makes me cry I start feeling like I am having a heart attack! And even happy feelings set me off. And woe to the one that gives me a scare - I cannot calm my heart down after that!

Thank you @Gastrodetails - very interesting!

@Derek1987 I think this form is filled out well and honestly reflects your disability. It actually is very close to what my PCP put down on the same form, and I was approved upon the hearing. As always - my advice is to be simply honest. You CAN'T do anything, either because it makes you sick or because it might make you sick, so there's no embellishing that fact. If the judge uses common sense and has any experience in his field it should be a no-brainer. And you might find the hearing a lot more straight-forward than you expect. My judge initially was a little accusatory in tone but as soon as he realized that I am answering his questions honestly and had ample examples of how work was impossible for me he changed his tune and became actually curious and compassionate. Remember - it is his JOB to be intimidating and to find out if you really are disabled - therefore he will push that fact. But you have nothing to hide and don't need to seek for trick questions - tell it simply how it is.

@sitcedar - yes, bingewatching! I am so guilty! I have been watching so many shows from beginning to end! But to sound less pathetic - I do get a lot of knitting done while doing it, so I actually saved money by making all homemade christmas gifts since summer! And I do get up to exercise or clean or cook .. but I sure love some of those shows!

Hello @Terrib - welcome to the forum! By RCVS - do you mean reversible cerebral vasoconstriction syndrome? I am not familiar with this disorder but after scanning through a few sites I can see that the symptoms can be similar to those we experience from dysautonomia. If you don;t mind - why don't you tell us a bit about your story, so we can see how we relate and if there are things we can learn from each other? I have Hyperadrenergic POTS, which causes vasoconstriction all over my body, including cerebral loss of circulation, from excessive adrenaline levels. Adrenaline is a vasoconstrictor. When the vessels to my brain constrict so much that there is no circulation I take autonomic seizures. I also have Raynauds disease and Prinz metal angina - both caused by too much vasoconstriction. So as you see - it sounds like some symptoms could be similar! I am looking forward to hearing more from you, and I am glad you found us.

Hello @Ctorch294 - welcome to the forum, but I am sorry you are coming here for these issues! -- What you describe certainly sounds like it could be a form of dysautonomia. Since your cardiologist suspects this - has he considered a Tilt Table Test ( TTT )? That is usually the most common way to establish if you have orthostatically triggered dysautonomic symptoms. Under our Information Tab you can find many articles that explain the procedure and the diagnostic criteria for POTS and other autonomic consitions, like neurocardiogenic Syncope ( NCS ) or orthostatic hypotension. I have both NCS and POTS and am very familiar with the symptoms you describe. I also passed out in my mid-teens and then not until my 20's. I would get dizzy often and have a racing heart but did not get severely ill until I was in my early 40's. I started to pass out at work, in stores, at home, in church, in restaurants ... in Dr offices and hospitals ... EVERYWHERE! My first TTT showed NCS ( HR went up, then plummeted and I fainted ) and the second one was positive for POTS. I hope the pulmonologist will not find anything serious. I too experience shortness of breath with slightest exertion but my lungs are good, it is the circulatory changes that can cause this symptom in POTS. Good that the cardiologist checked you out so thoroughly, but it is common in dysautonomia to have all tests come back completely normal. I am however surprised that the stress test was normal, I failed all of mine with tachycardia and chest pain. I would ask for a TTT as a next step, it is what should be done when suspecting dysautonomia. Depending on those results there are other tests that are more specific to autonomic disorders that can be done too. I can tell you what I know you could do to at least stop things from getting worse: drink lots of fluids, eat a lot of salt, wear compression garments ( very important to minimize fainting ) and - equally important - stop exercising so hard! Usually when we are symptomatic they recommend 30 minutes of aerobic exercise 3 times a week, followed by ample rest periods.. Since your body is used to exercising you may simply start by not pushing so hard through the routines. Despite the health benefits of exercise - for dysautonomic patients intense exercise can make things worse. It is best to listen to your body, pat attention what exercises or after how many minutes you start to feel bad, and then try to stop before you get to that point. Pace yourself! But one good thing is that the younger and healthier you are when you get it ( if that is what is your problem ) the better your chances of getting over it. Despite POTS etc being a chronic condition - many people have improved completely, despite having had some rough years from it. The above recommendations are what you can do for yourself to get better, but in most cases people do need some kind of medication to get better, at least for a while. Beta blockers are often the first line treatment for the tachycardia and palpitations, as well as fludrocortisone or Midodrine. Depending on the mechanism causing POTS ( and there are many different kinds ) it can take a while of trial-and-error before the right treatment is found. I hope this is helpful, and please let us know how things turn out! Be well!!!!

@p8d - baroreflex failure is a type of dysautonomia.It shares many symptoms of POTS but has it's own unique mechanism.

Dear @Scout - I am so sorry you are having these surges! - I do not have baroreflex failure but I have HPOTS and NCS. When I was at my worst ANYTHING could trigger the high BP and tachycardia, even crying and often any type of stress. I do believe that being upset and crying falls under the emotional stress category, therefore a spike in BP may go along with the disease. If your physician has you only on Diazepam ( which should be taken as needed ) and the spikes appear despite it then you may not be adjusted properly. There are more meds you can take, as outlined in this article Four Faces of Baroreflex Failure | Circulation (ahajournals.org) It lists Clonidine, Guanadrel, Guanethidine and Diazepam as commonly used treatments. However - as it is often the case it may be difficult to treat the Hypertension when it only occurs for brief, triggered episodes and stays normal or only slightly elevated in between. I understand your concern of taking Diazepam, since the threat of becoming addicted is real. I use Lorazepam for high stress situations to prevent flares and also use it at times for sleep, but I make sure that I only take it a few times a week and never more than one tablet a day. Hopefully you do not have a need to cry often 😟 so it may be safe to take it when you are upset, it may relieve the surge. Wishing you more smiles 😉 - hang in there!