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@Chuske - this used to happen to me all the time when I was unstable. For me it was b/c in my case the adrenaline would not drop during sleep, as it does in healthy people, and the digestive system never "slept" due to the high adrenaline. Bloating and Reflux were very uncomfortable during the night - and the day as well!!! Yes - I totally agree. In my case the EGD revealed a lot of problems due to the acid and gastroparesis and I needed about a year of heavy GI meds ( I took about 6 different meds at that time for GI issues ) and a complete change of both diet and eating habits. Generally low acid foods. higher protein, lower carbs and 6 snacks rather than 3 meals helped me a lot. Other tests they did were a barium swallowing study to determine if there were any anatomical reasons for the reflux and a gastric emptying study - to see if the food leaves your stomach normally or dumps too fast or stays too long. They also took biopsies during the EGD to test for H. Pylori and Gluten sensitivity. Food allergies or sensitivities can also play a major role in digestive troubles.

@Chuske - I never really had a set amount, I would simply eat salty snacks ( olives, pickles, added table salt etc ) during the day and drink as much as I could. I would try to drink at least 8 - 16 oz ( 1 or 2 glasses ) of liquid each hour ( although this is difficult, since I do not usually feel thirst ). It was never enough - somehow I always peed out more than I took in ( in my case dysautonomia affects the bladder and I urinate too much ).

@Abe - when I first became ill with POTS I felt utterly alone, alienated from the rest of the world and almost hopeless. There was no one to tell me what was wrong with me, everyone ( from docs to family and friends ) thought I should just "snap out of it" and I tried to do that but did it never worked ( and then I blamed myself ). Only once I found a specialist who knew all about my symptoms, how to treat them and - most importantly - finally put a NAME to my them did I finally feel understood. For many of us finding out that this is an actual illness ( and not something we can control ) feels like a huge burden lifted. You are not alone - and since most of us experience many of your plights the people on this forum will listen - and we will try to help if we can. It is the reason Dinet exists. Be well!!!!!11111

Oh - poor @Starrynight!!!! This sounds like me completely!!!!! - When I first became ill with POTS no one knew what it was and I kept getting the cold shoulder from cardiologists. So I went on to do my own research and found that I had hyperadrenergic POTS. Once I brought this to my PCP's attention he agreed to the possibility and send me for a TTT, which confirmed NCS. After a years waiting period I finally saw an autonomic specialist, who ran neurotransmitters and confirmed HPOTS diagnosis. So - you are right to suspect dysautonomia. Your symptoms are pretty typical for POTS, and both pregnancy and viral illness ( which you mention in your post ) can cause POTS. So you are not wrong by suspecting this. The requirements for a POTS diagnosis are symptoms over 6 months ( check ), a sustained HR increase of 30 BPM or more within 10 minutes of standing without a significant drop in BP and the type of symptoms experienced ( all of your symptoms are typical for POTS ). Of course no one here is able to diagnose yo,u but I certainly would ask your cardiologist to have it checked ( actually - I would DEMAND it ). Cardiologists unfamiliar with dysautonomia often think of SVT first - mine did, as does yours. The cardiac monitor should show if that is the case. IF it is POTS, however, the monitor will most likely just show Sinus tachycardia and maybe extra systoles, which may be brushed off as harmless. They might claim that it is due to anxiety, dehydration or exercise and simply tell you to drink more fluid. And that is ONE treatment for POTS ( along with an increase in salt intake ) but may not be enough. The first - and often most important - test for POTS is a Tilt Table Test ( or TTT ). It will show if your HR stays elevated or goes back down when standing - there are protocols for this that even cardiologists inexperienced in dysautonomia should follow. Here are some articles from our web site you may find helpful: Personally I printed out articles, underlined the symptoms and facts pertaining to me and brought them to my appointments. This way even the most ignorant physicians had to consider it. I am blessed with an excellent PCP who believed in me and worked with me towards diagnosis and treatment. But beware - even if you get a diagnosis following a TTT they may simply prescribe a betablocker and expect you to be fixed ( which may or may not be the case ). So after the TTT and if it shows POTS I would seek a referral to an autonomic specialist ( see the list under our physician tab on the home page ). In the mean time an increase in fluid and salt intake ( unless you have high BP - then check with your doc on the salt first ), compression hose ( thigh-high preferably ) and ample rest may be needed to hold you over and give you some relief. Also - the book "The Dysautonomia Project" is very helpful. It is written BY doctors and patients FOR doctors and patients with dysautonomia and addresses both audiences. It informs patients, physicians, family and friends as well as the general community about dysautonomia and is meant to be shared by patients and their physicians. I shared mine with my PCP and my local cardiologist and they both appreciated the information in it. You can find it at the web site with the same name or at amazon. I hope this is helpful and I wish you courage, strength and patience in your quest. Keep up the good work researching and advocating for yourself - you are certainly justified in looking into dysautonomia as a cause for your symptoms. Best of Luck - and please keep us posted!!!!!!11111111111

I used to eat a salty snack before bed and keep a big glass of water at my bedside. I now get weekly IV fluids and no longer need to get up at night, but before the IV's I would get up several times a night - both to drink and to pee!!!!!!!!!!

@Hadders - this happens to me when I exercise too much. Exercise can stimulate a Fight-or-Flight response and cause the body to produce too much adrenaline ( norepinephrine ). In "normal" people this will cause the high HR, raise in BP, increased respirations etc, and after exercise these reactions come back to baseline. In dysautonomia, however, the adrenaline does not get out of the system properly and therefore causes prolonged "Stress Responses" - therefore we are overstimulated. For this reason in dysautonomia normally mild to moderate exercise is recommended, followed by ample rest to allow the norepinephrine levels to come down. Personally I have to avoid ALL rigorous exercise and only do mild activity followed by 5-10 minutes of rest and retreat from stimulation. That means after a short walk or a few minutes on my rowing machine etc. I have to actually sit or liw down in my bedroom, away from noise or stimulation, and simply wait until I am able to get up without my heart racing etc. According to our information site ( and common advice from specialists ) rigorous exercise is not recommended, but rather a carefully balanced moderate exercise regime: Aerobic exercise performed for 20 minutes a day, three times a week, is sometimes recommended for patients who can tolerate it (Grubb, Kanjwal & Kosinski, 2006).

@Chuske - dysautonomia affects the GI tract as well as many other body systems, not only cardio-vascular. In my case in the beginning of my illness, when I was completely unstable, I had severe GI problems. I had GERD, gastroparesis, IBSD ( Irritable bowel syndrome with diarrhea ) and ended up with precancerous esophagitis ( Barrett's ) and duodenitis. This was due to the high norepinephrine levels causing these GI problems, as soon as we found the right med combination for me everything improved, GI and CV symptoms. The GI tract is controlled by the ANS and when we eat the parasympathetic branch kicks in to aide in digestion. By doing so it diverts the circulation of blood to the organs required for digestion and away from other body parts. ( That is why often we get lazy and sleepy after a big meal ). --- When we go into the Fight-or-Flight response the opposite occurs, and the ANS directs blood flow towards the vital organs: heart, lungs and brain. This will draw the blood away from the digestive tract. Normally these reactions occur in balance, meaning that they happen at the appropriate times and are activated by the appropriate triggers. In dysautonomia however they happen in chaos, not in response to the appropriate triggers but often in attempt to compensate for the dysfunction. This will cause both heart and GI symptoms and it can put our bodies under extreme stress, therefore causing the ANS to kick in stronger. I my case this caused high HR, palpitations, BP fluctuations, excessive vasoconstriction, high stomach acid and increased peristalsis ( bowel contractions ), acid production in response to some triggers and low BP and gastroparesis at other times. The article you provided explains this in reverse: the GI symptoms can cause cardio-vascular problems. This is also true - but in dysautonomia BOTH are caused by the dysfunctional ANS.

@TCP - I am truly sorry and can imagine how utterly abandoned you must feel. These illnesses are scary and unpredictable, so not having the support of a knowledgeable physician is tough. In the beginning of my POTS journey I too was signed off by different cardiologists, sometimes it was b/c they thought there was nothing wrong with me and other times b/c they felt they could not help me ( as it seems in your case ). However - a chronic illness such as yours always requires specialist care for MAINTENANCE of the condition, so your GP should definitely send you to another specialist ( hopefully a better one ). It is frustrating that specialists have such long waiting lists but it is not realistic for you to be stuck with a GP to handle your complicated symptoms. I am sure your GP is aware of that. What I have done when I had only my ( albeit absolutely wonderful ) PCP to lean on is drive him crazy with relentless visits and complaints. Soon enough he did whatever he could to get me seen ASAP, and in many cases it worked to get me in sooner. I am not sure how that works in the UK but I think the phrase " the squeaky wheel gets all the grease " is universal. Hang in there and keep looking for an experienced physician, even it takes 6 months. Best of luck!!!

Hello @Mommy1989 - congratulations on the baby!!!! - It is not uncommon to have problems similar to yours in the postpartum months, since your body is experiencing massive changes. It could simply be related to that and may require increased water intake and ample rest as well as a healthy nutrition. ( Well - that will not happen though - not with a little one sucking up all of your time, attention and strength!!! ) In Dysautonomia - or POTS as it relates to your symptoms - the symptoms have to be present at least 6 months in order to qualify for diagnosis. Also - if the HR goes up and goes back down after a few minutes it probably is not POTS, since in this disorder the HR does not go back unless you lie down. In addition to the tachycardia upon standing we experience dizziness, fatigue, orthostatic intolerance, brain fog, attention deficits, sleep disturbance, fainting or presyncope … the list goes on and many of these symptoms also are experienced by any new mother. If your HR spikes continue your doctor will most likely order a Tilt Table Test to determine the degree of your orthostatic intolerance and cardio-vascular response. In either case - POTS or not - an increase in fluid intake and compression hose should be beneficial for the symptoms you experience, especially the blood pooling. Often our HR goes up in response to - even mild - dehydration or low blood volume. This CAN be a result of breast feeding ( not sure if you do ). Increasing salt intake along with the increased fluids is also often helpful, but check with your doctor about that if you are breast feeding. Personally I believe that compression hose could help most of your symptoms. You can get it in medical supply stores or online. If you do get it make sure you get instructions on how to properly measure your legs in order to get the right size, which is essential in making sure they help. Compression hose aids the body to pump the blood back to the heart when standing and therefore can prevent the high HR ( which is a way for the body to pump enough blood through the body ). You can find more information under the information resources tab on the home page of this web site. Be well - I wish you and your baby all the best!!!!

@green - thank you for sharing. I have been helped by breathing exercises often during hyperadrenergic spells and am aware of square breathing. It does work and throughout history ( in western and Asian medicine ) breathing has been proven to calm the ANS, improve circulation and decrease anxiety.

Hello @Clairebun - I am so sorry you and your daughter have to go through this. Fortunately in many cases of dysautonomia in teens it improves after a while. These questions should really be directed at her physician, since members on this forum are not allowed to give medical advice. We can, however, share our experiences. In my case salt was always immediately effective - but often not enough. It is very important to increase both salt AND water together, since they only benefit us together. They can increase blood volume, and usually this occurs right away. There are several posts about licorice root on this forum, you might want to search in our search engine for them. Some people here have found relief from licorice root, however - many report that the benefit is temporary and that it stopped working after about a year. It is good to see an autonomic specialist but they usually have a long waiting list and often require test results prior to the visit. The most important test is the Tilt Table Test ( commonly referred to as TTT ). This test usually is the one every doctor looks for when it comes to diagnosing POTS. You can find more here https://www.dinet.org/info/dysautonomia-disorders-diagnostics-info/autonomic-testing-for-dysautonomia-r206/ https://www.dinet.org/info/pots/pots-guide-hydration-and-pots-r150/ I assume you are asking what you need to watch for in HER? Definitely any fainting spells, palpitations, racing HR, tremors, fatigue … POTS is an orthostatic disorder, meaning the symptoms are triggered mostly when upright ( but many other triggers exist ). In most people suffering from dysautonomia a careful balance of rest and exercise helps, as well as compression hose ( helps with circulation while upright ) and - as you already know - increased salt and water. It is also important to remind her to get on the floor if she feels dizzy or faint, since passing out is common in some types of dysautonomia. If you check under our information resources tab you will find many helpful articles to guide you and your daughter. And under the physicians tab you can find a list of physicians treating dysautonomia patients. I hope this helps to clear up some of the fear and confusion that naturally comes with a dysautonomia diagnosis. Good Luck - there are many people here that are willing to help and can share their experiences.

I just want to clarify that MCAS is not common or present in all POTS patients, just as not every POTS patient has EDS. But there are some people who have both - MCAS and POTS.

@dancer65 - how awful!!! Are you OK now? --- I too get really bad POTS flares when allergies strike, for me it is mostly pollen and insect bites. I have to take antihistamines or I become bedridden. Your reaction sounds terrible, no wonder you developed increased POTS symptoms!!! And yes - it is always important to be mindful of our vulnerabilities due to this disorder. As soon as we get ahead and feel somewhat normal … WHAM! Something bursts the pretty ( short-lived ) bubble and brings us back into reality!!! Thanks for reminding us - and I hope you recover!!!!!!!!!!!!!

Well - insomnia goes along with high norepinephrine ( adrenaline ) levels. Before I stabilized on my medication combo I also could not sleep. I would fall asleep easily but woke up after 3 hours - the time when normally adrenaline levels drop and allow for deep sleep. It took years for my autonomic specialist and me to come up with the right combo of meds to create a level of balance, so don't expect to be able to handle this all on your own. You don't have to have HPOTS to have adrenaline rushes, any ANS malfunction can cause your symptoms. As I mentioned before - in the way of self treatment the only thing you can do is to increase salt and water intake ( to improve your volume ), compression hose ( to aide proper circulation ) and a good balance of rest and exercise. This can be helpful but most likely will not be the cure. If you look under the information resources tab on this web site and click on POTS you will find many helpful articles that explain what is going on and what you can do. In my case I did not find help until I was referred to a capable autonomic specialist that understands all of the intricacies of this condition. I understand that there are not many specialists in the UK but you may want to look at our physician listing ( under the physician tab ) and seek treatment from a specialist. I truly wish you the best - I know how incredibly difficult it is to live with this beast and how frustrating it is. But please know that there is hope - many of us here were able to improve to a degree. Be well!!

Dear @Morgana - first of all I want to stress that I am simply going to give you my opinion, I do not want you to think I am advising you to not seek treatment. It is always best to see a physician when unclear. However - during this pandemic it is not as easy to just go to the ER, so here are my thoughts and observations: I do not see any real serious or drastic changes in your BP or HR, except that on May 16th your BP was in the systolic hypertensive range ( 135/102 ). When my BP goes there I am already well into a POTS episode. The readings you list when you were symptomatic are also not that surprising for someone with dysautonomia. I also would like to stress that when we experience dizziness or shortness of breath or any other symptoms they often are caused by a SUDDEN CHANGE in BP or HR and by the time we take our BP and HR this change may already have occurred. --- Also - remember that everyone experiences fluctuations of HR and BP during the day, often from minute to minute or more often, this is all normal due to our activity levels and the ANS compensating. In dysautonomia we experience dramatic changes in Vital signs when standing and they do not improve unless lying down or resting. So it is important you check your HR and BP after lying down for several minutes, sitting up for 1 minute and then after standing for 1 minute and then again after 5 minutes. If there is an increase of at least 30 BPM ( or above 120 BPM ) in HR WITHOUT a significant drop in BP it might be dysautonomia. So - if your HR is 134 that can be totally normal, it is important to see what you are doing at the time, how fast it goes up and how long it stays up. It is also important to know that there are many factors that can increase our HR, dehydration is one. So if you feel your heart is beating too fast you may want to drink more fluids, this is the case for most people, not only in dysautonomia. Many people find that drinking even just one glass of water fast will improve their tachycardia. However - if you feel like passing out ( or actually faint ), have chest pain or unexplained shortness of breath or feel severe anxiety please do go to the ER. Otherwise call your PCP to ask for advice.

Hello @Chuske - I am so sorry that you are going through that!!! I am familiar with these "spells" as I also experience them, except I take actual autonomic seizures as a result. I was diagnosed with hyperadrenergic POTS. What I have found to be helpful for these flares is ample rest with slowly increasing exercise TO TOLERANCE, increase fluids and salt intake, avoid big meals but eat 6 snacks a day and minimize time spent talking ( this is actually a big feat for me when ill ). I stress that rest and exercise are very important - the rest calms the ANS and the exercise maintains - and even improves - the orthostatic abilities. Here are some exercise tips from Dysautonomia International: dysautonomiainternational.org/page.php?ID=43 I usually begin with abdominal and leg exercises when confined to the bed and get up to stand every hour at least. Then I graduate to sitting exercises and eventually to standing. I also find it helpful to stand with back and shoulders against a wall and bending the knees - that helps me with orthostatic intolerance. Again - water and salt intake are essential for me, since they increase the blood volume and therefore can improve our symptoms. For anxiety or during hyper-attacks I try deep breathing exercises, here are some tips on how to do them ( they can greatly reduce the stress hormones ) https://www.verywellhealth.com/how-to-do-deep-breathing-exercises-1945350 I hope these tips can help you as well as they help me getting through a flare. The only other thing I know is patience and knowing that the flare WILL end. Best wishes!!!!!!

@p8d - if your doc recommends taking it I guess you should give it a try. I have not heard either good or bad about it being used for HPOTS, so I guess it is the usual hit-and-miss thing.

Hmmm - I don't really know!! I think an autonomic specialist would probably know the answer. Personally I think that a sudden increase in HR would lead more to blood pooling - that just makes sense to me. The blood pooling occurs immediately upon standing whereas later increases in HR and/or BP are caused by inadequate attempts to stop the pooling. I have HPOTS and NCS and often the symptoms from NCS happen more immediate after standing as opposed to the HPOTS symptoms that occur after a period of the ANS trying to adjust. Of course these are just musings on my part as I don't really know the answer to your questions!!!

@Nin - I am so sorry you are having such a bad flare. I used to get seizures lying down as well when I was bad, sometimes with very little warning. Most of the time I don't know the trigger that set off my symptoms. Has it been hot, humid or changing weather? These all can be triggers for me. Heat and sudden changes in barometric pressure mess with my ANS. So do allergies - it is allergy time here now and I have to take Claritin or I get very bad. Insect bites will do the same. Hormonal changes, such as menstuation, can also cause it. Pay close attention to what is going on the days when you are bad - that way I was able to come up with triggers and can try to avoid them. In cases that are beyond my control, such a weather changes, I simply hang low and wait them out. Drinking less water can be bad when you are not well, so I would try to drink up 😣! My seizures became less frequent when I had to stop working and was able to adjust my day around POTS, taking breaks or even staying in bed if needed. Finding the right meds was crucial - but what helped me most of all are regular IV fluids. Thanks to these I RARELY ever have seizures or syncope and my Quality of life has greatly improved. They are controversial to some docs but are also used by autonomic specialists for flares, such as you experience. Prior to getting a port and weekly infusions my doc would prescribe them during flares and they ALWAYS stopped the symptoms. BP would drop immediately, tremors would subside, I would be able to get up and move around without passing out - or even getting dizzy. Once you find a capable specialist you may be able to bring this up, as I said it is a common treatment for POTS in some cases.

@Nin - as far as I know compression stockings are good for hyperPOTS as well. They will make it easier for the heart to pump the blood, so they can prevent ANS dysfuction ( which is a faulty way for the ANS to compensate for the inability to create adequate pressure in the vessels ). Unless you have issues with circulation in your feet I think you should try them if your doctor agrees. they are commonly used for treatment in POTS ( regardless of type ).

@TigerLily - I am sorry to hear, but at least you know what is going on. I had gastroparesis for a while, causing severe GI disturbances. It was due to dysautonomia. With medications and a change in eating habits and a special diet the symptoms have greatly improved. I wish the same for you!!!!

I know you have tried IV fluids before and they have helped. With readings like that ( and those unbearable symptoms ) it may be time for an infusion??? Are you still able to get them where you live?

@ReginaH - I would be more concerned about the systolic hypertension in 116/94 than the low PP. I get readings like that and it is usually a sign of low blood volume for me ( although my BP fluctuates extremely ). When I become symptomatic and my BP shows systolic hypertension with low PP I get IV fluids and all is well. ( I have a port and get IV fluids at home, so it is easy for me ). I certainly do not recommend for you to get IV fluids but rather want to point out that low blood volume could be the culprit and could be worsened by fludrocortisone.

In my case the increase is within the first 5 minutes and goes ( for example ) from 60 to 120 within 1 or 2 minutes and then above 150 within the next few minutes. This is also accompanied by a spike in BP - I have HPOTS.

@Bird444 welcome to the forum, although I am sad you had to!!!! -- The symptoms you describe sound a lot like presyncope, which I experienced many times a day when I was at my worst. In my case it happened many times a day, frequently leading to syncope and even seizures. I was diagnosed with hyperadrenergic POTS and NCS. What happens to me in these spells is that I experience sudden adrenaline rushes that lead to severe constriction of the blood vessels ( fight-or-flight, as you recognized ) that cut of circulation to the brain,and this leads to tremors, heart pounding, high BP, dizziness, tunnel vision, roaring in the ears, loss of balance … pretty much everything you describe. If I do not lie down ( and even that may not be enough ) I take seizures ( from the sudden violent spasms of vessels in the brain cutting off blood supply ) or the ANS suddenly compensates by dilating all of the vessels and I pass out ( that is the NCS - or neuro-cardiogenic syncope part of it ). It does sound like an autonomic issues to me and since your cardiologist feels that it is unrelated to your SVT I would ask your PCP to be referred to an autonomic specialist ( see our list under the physician tab on this site ). I also would ask your cardiologist for a Tilt-table test. This is usually the first test used to diagnose dysautonomia since it commonly triggers the symptoms. You might also ask to be referred to a neurologist knowledgeable in autonomic disorders. If you are not sure who to see you can inquire at one of the major medical centers or University hospitals in your state if there is a physician specializing in dysautonomia. Autonomic specialists usually have a long waiting list and in the meantime it may be a good idea to run tests for dysautonomia. You can find more info here: I hope this is helpful. In the meantime you may want to check with your cardiologist or PCP if you should initiate the usually recommended treatments for dysautonomia, which are compression hose and increased water and salt intake. To me what is vital in preventing the spells you describe is avoiding overstimulation. This is usually any type of stress, whether prolonged standing or stimulating noises, talking too long, exposure to electronics, heat or cold, emotional stress ( even a sudden scare ), certain medications etc etc …… the list is endless. I am sorry you are dealing with these issues and I sincerely hope you will find a knowledgeable physician. Best of luck!!!!!!