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@toomanyproblems - it really helped a lot for high BP, energy, sleep - and it just simply put me in a good mood, not in a fog as some antidepressants do. My usually fluctuating BP became so low that I was able to go off some other BP meds 😲!!! It was one of the MOST effective medications for my symptoms and I am so sad to have had to stop taking it. I started breaking out with serious acne, sore and bleeding lumps all over!!!! I researched this side effect and it is rare and needs to be reported. Since stopping 😢 it has resolved. Bupropion also had these positive effects for my sister, who also suffers from HPOTS. I don't really know why it works so well but it dis for me!!!

@p8d - I have asked that question myself and do not understand it either. It seems to make no sense - but I know that it is commonly used in treatment of HPOTS and in my case ( and my sisters ) has proven to be effective in stopping certain HPOTS symptoms. I wonder if by preventing reuptake of norepinephrine it simply provides a balanced level that prevents the sudden spikes - 🧐 ?

@Jwarrior77 - I am so sorry that happened to you!!! It is so cruel the way some specialists treat POTS patients. You are right on the money - I totally agree with this assessment because I have met doctors like that, they fit exactly in that category.

The reason cardiologist often get consulted for dysautonomia is because it causes tachycardia, BP problems, chest pain, palpitations, fainting … all of these symptoms are a reason for a cardiologist referral, mostly to rule out something more life threatening than POTS. But that does not mean that the cardiologists know how to diagnose or treat it once they have ruled out something else. I totally agree about the name!!! I always thought something like autonomic neuro cardiogenic imbalance ( ANCI for fancy!!! ) or dysautonomia with cardio-vascular impairment ( DCVI ) would be better ( I made these names up but they sure do sound good! ). Or maybe Autonomic Disorder with cardio-vasculo-gastro-uro-neuro-somno-cognitive malfunction ( in short ADCVGUNSCM ).

Dear @hnn21 - I had several surgeries since developing HPOTS 11 years ago and I have found that MOST surgeries trigger a flare. B/c of my severe BP fluctuations from and during anesthesia I am considered a high-risk patient for anesthesia of any kind ( even dental ) and have had problems from it. As with anything else with POTS: we won't know how we react until we try. If your doctor and surgeon are aware of your dysautonomia the anesthesiologist can take precautions and monitor you for symptoms during the procedure. There are medications they can give you during the surgery IF your BP misbehaves, and afterwards it will be up to you to slowly recondition to get through a possible flare. Good luck !!!!!

@Sam10 - I agree with @KiminOrlando. Compression hose can be very effective for fatigue. It sounds to me that it is possibly caused by excessive vasodilation in your case, since it seems to improve after exposure to cold water ( a vasoconstrictor ). The vasodilation can also bring on ectopic beats - so it may be something to be considered for you. There are medications that can help with this but they of course need to be prescribed by a physician. In the meantime increased salt and water intake as well as compression garments could help.

I saw my local cardiologist for a follow-up this week. Although not my autonomic specialist he is involved in my dysautonomia care and is knowledgeable in it, he sees other dysautonomia patients as well. He is kind, patient and willing to educate himself about POTS ( which is a rare gem of a doc!!! ). Well - he told me that in the community of his peers ( it is a University Medical Center ) a vast majority of physicians actually refuse to treat POTS patients. He states that when the subject comes up in Seminars or academic meetings they leave the room or zone out. He claims this is because the mechanism of dysautonomia is not merely a cardiac issue but rather affects the entire body ; therefore they do not feel that it is a condition that they should be consulted for. He also states that many of them encounter patients that claim to have dysautonomia but do not and will not take no for an answer. I guess that explains why so many of us are told to take a beta blocker and get out 😠! I have encountered many physicians that still dismiss dysautonomia and this is hugely based on their being uneducated regarding this disorder. There are too many of them that have stated to me that "they have an opinion" about it and do not consider it a real affliction. I have called several major medical institutions in my state and also sent emails demanding this situation to change - admittedly with very little effect. My 15 year old daughter has developed POTS symptoms ( HPOTS runs in all females in my family for 3 generations ) and I WILL NOT put her through what most of us had to endure. Luckily I have support from my autonomic specialist and he guides me in her treatment. Most other people are not that lucky. I encourage everyone experiencing dysautonomia symptoms to educate themselves, be proactive and challenge these physicians by standing up to them with knowledge. When seeing a new doctor it is important to have a list with Vital signs ( best a series of orthostatic sets ), all of the symptoms we experience and questions regarding these findings. If they feel qualified to dismiss all of these facts then they should also be able to explain them to us. I personally would not accept simply a prescription for a beta blocker and a 6-12 months follow -up. We deserve to either be taken serious and treated or he/she should refer us to a more educated specialist ( which many do not do b/c it would require them to admit their failure to be able to tackle dysautonomia ). We deserve better !!!!!!11

O @Sam10, it does not. Criteria for the diagnosis of POTS is a HR increase of at least 30 BPM within 10 minutes of standing WITHOUT a significant drop in BP, symptoms for at least 6 months, symptoms exacerbated by standing and improving with lying down. It appears you fir at least 2 of these criteria, so I would approach this by seeing an autonomic specialist. That is GREAT!!!! Many autonomic specialists have a waiting list of up to 1 year ( my specialist has 18 months for new patients ). ---- Your stress echo shows PAC's, which are not considered a serious arrhythmia ( but I have them and PVC's and therefore know how hard it is to live with them 😒 ). Here is an explanation Premature Atrial Contractions Premature atrial contractions are the most common atrial arrhythmias, occurring in 54% of patients with acute MI (see Table 20-1).8,11 These beats may result from heightened sympathetic activity owing to pain or anxiety, or they may result from atrial distention, pericarditis, atrial infarction, or atrial ischemia. Although premature atrial contractions may precipitate other atrial arrhythmias, they are usually asymptomatic and are of no hemodynamic significance. Because premature atrial contractions are not associated with increased mortality, medical therapy to suppress these beats is not indicated.11 As you see they often result from heightened sympathetic activity, as is present in dysautonomia. --- You mentioned that the beta blocker you used was only helpful for a few weeks and then the cardiologist recommended to increase the dose - this is also common in dysautonomia. I tried 4 BB's and all of them stopped working after a few weeks, to the degree that I thought I was building up a tolerance to them. My current BB ( Carvelidol ) was started at 3.25 mg and I have been on 25 mg for 5 years!!! So as you see - this is common. Since I also had bad experiences with cardiologists ( including an EP who conducted a TTT and completely misdiagnosed my clearly positive results as anxiety ) I can only again stress the importance of seeing an experienced autonomic specialist. I have to travel 8 hours out of state to see mine - and most of us have to travel for our appointments. Many states do not have anyone specializing in this field. "Regular" cardiologists simply do not want to mess with dysautonomia and only will treat your cardiac symptoms ( Tachycardia and ectopic beats ). Unfortunately many will dismiss all of the other symptoms. What you are going through right now is unfortunately a scenario a majority of POTS patients has to endure since ( still!!! ) the time from onset of symptoms to diagnosis is 6 years in most cases. I was diagnosed within 2 years but that is only because I researched dysautonomia and ended up knowing more than my docs about it - therefore I was able to "fire" all of the bad ones and asked my PCP for a referral to one of the nations greatest dysautonomia specialists and after a 1 year waiting period he diagnosed me in the first visit and has been by my side ever since. The people on this forum have all experienced your dilemma and since so many of us suggest a specialist it may be what you want to look into. Good Luck!!!!!!!!11111

I agree with @yogini - increase in salt intake is NOT advisable for many people, but it is a PROVEN treatment for dysautonomia patients.

@JFreeer - I have been on the SSRI Lexapro for my HPOTS for many years, it is a commonly used medication for POTS ( not used for depression or anxiety when used in POTS diagnosis ). I also in addition was on Wellbutrin ( Bupropion ) for the last 4 months with EXTEMELY good results but had to stop due to developing acne on it - a very rare side effect. I loved the Wellbutrin, it lowered my BP and HR, gave me energy and more exercise tolerance and I simply FELT good on it. I am sad to stop it. SSRI's and SNRI's help in the treatment of dysautonomia by balancing neurotransmitters such as Serotonin ( SSRI ) or Norepinephrine ( SNRI ) and therefore can lessen autonomic symptoms. Here is some more info on this subject that is easy to understand: https://www.potsuk.org/ssris_snris

@Sam10 - I would like to warn you that ablations are not recommended for dysautonomia because the cause of both tachycardia and palpitations are not within the heart itself ( therefore there is nothing to be ablated ), but rather stemming from abnormal nerve communication. I have heard from several patients that had an ablation for their tachycardia that it was not at all helpful and from doctors that ablation would not help unless it is an arrhythmia such as inappropriate sinus tachycardia, ( which can cause similar symptoms as POTS tachycardia ). Here is an exerpt from an article on Dysautonomia International: * Sinus node ablation/modification. The role of sinus node ablation and modification in patients with IST has not been well defined and it should only be seen as a last resort treatment. Although short-term success rates were favorable (76%-100%), long-term outcomes were disappointing, and the need for permanent pacing and other procedural-related complications has been reported.(1,2,3,9,10,14) Sinus node ablations are not recommended in patients with POTS, as this often worsens the condition.(1,15) You can find more info from this link: https://www.dysautonomiainternational.org/page.php?ID=228 Honestly - it sounds to me that none of your cardiologists or GP's are considering dysautonomia, which would alarm me personally and would keep me from having an ablation unless they have found the cause of your tachycardia. Extra beats such as PAC's and PVC's often are treated with medications and are considered harmless ( albeit scary and annoying ). I also know the exact day of onset of my dysautonomia symptoms and developed non-stop palpitations, just like you. In my case proper medication have helped for this. I saw 5 cardiologists that only looked at the heart itself and therefore missed ( and even Dismissed!!!! ) dysautonomia. I was not diagnosed until I saw an autonomic specialist, so I would consult with one before having any invasive procedure done. Although trying several medications before finding the right combo ( including several beta blockers ) my PVC's and PAC's are mostly gone with medications ( in my case the beta blocker Carvelidol stopped them ). If your symptoms are caused by dysautonomia ( and it sounds possible ) I personally - as I mentioned before - would see a specialist in autonomic disorders first, to confirm or rule out dysautonomia. Best wishes!!!!!!!!!!!!!

Hello @Sam10 - I am so sorry that you are dealing with all of this, and seemingly are on your own!!! Some of your symptoms sound as if they could be dysautonomia related, but they could also be caused by something else. It's possible that you picked up something uncommon in Fiji and this caused these symptoms. Dysautonomia commonly is triggered by an infection - so it could be that potentially. Personally - if you have not been able to be evaluated for dysautonomia it may be a good idea to seek advice from an autonomic specialist ( see our physician list under the physician tab on this web site ). Fatigue, palpitations and GI issues can definitely be dysautonomic - the burning legs could be a neurological symptom: have you seen a neurologist? ------ In general increasing water and salt intake can help immensely for your symptoms. Compression hose as well - but I am not sure if you could tolerate it with the burning of your legs. Unfortunately I don't have any words of comfort to give you other than to seek a knowledgeable specialist. It is quite common to not find answers from the general medical community since they rarely are able to treat dysautonomia. Regarding the fatigue: I have found that pushing yourself can make this worse, many of us have to limit our activities and adjust to the demands of our bodies. A schedule allowing for ample periods of rest with mild exercise ( to your tolerance ) can aide in improving some of your symptoms - but be careful to not push yourself. For further info on diagnosing Dysautonomia you might find this helpful:

@Hippopotsamus and @RecipeForDisaster --- I found through my own experience that there is no way around doctor shopping. Although I am lucky to have had a phenomenal PCP right from the start I could not find cardiologists or neurologists that understood POTS. I kissed a lot of frogs before I found my prince in the way of specialist, but I don't know where I would be today without the endless support and patience of my PCP. What is absolutely necessary ( besides a basic knowledge of dysautonomia in general or at least an open mind towards it ) are the following qualities: - listening. If the doc does not listen and take you serious it's an automatic out. - willingness to work with you in trying a treatment. If he/she tells you to take a beta blocker and expects you to be done it's not worth your time. Many docs believe that if they treat ONE symptom the rest should improve as well and then label you as difficult or hypochondriac when you don't react as they expected. - understanding that as PCP he/she is your absolute go-to person. A PCP should not simply refer you to a specialist and then expect that doctor to take over. Dysautonomia is a multi-faceted illness that requires a TEAM of specialists who work together in finding the right treatment for ALL of your symptoms, and the PCP is the coordinator of all of them. - understanding that dysautonomia is a chronic illness and MAY ( not necessarily will ) lead to disability. The PCP then is responsible for helping you in that process. What I have found to be a helpful tool in knowing what to expect from your doctor is the book " The Dysautonomia Project ". It is a book written for both patients and physicians and is a guideline for both in what to expect and how to approach POTS treatment. I read and shared it with my PCP and Cardiologist and both found it immensely helpful. You can get it at the website with the same name or at amazon. To both of you I encourage you to not settle for anyone that does not make you feel relieved after the visit. For most dysautonomia sufferers it is like a huge load taken off when we hit the jack pot and find the right PCP. Best of Luck!!!!!

I would like to add that the most significant difference in the diagnosis of hyperadrenergic POTS are elevated norepinephrine levels and Hypertension. These factors are not necessarily present in other forms of POTS.

@Alittlelost - since they gave you meds for UTI: did they re-check your urine sample? --- It is funny you had abdominal pain at the beginning of these episodes: when my dysautonomia journey started back in 2009 it started with me waking up in the middle of the night with severe abdominal pain which then led to fainting …. I believe it was an ovarian cyst. the pain subsided but all of the other dysautonomia related symptoms remained. I think in my case the pain triggered my first autonomic flare. I wonder if the UTI triggered the same for you? UTI's are one of the worst infections for dysautonomia ( per my specialist ) since they are really hard on then body and causes a lot of stress. I know - I used to be a nurse and would not go to ER for fainting or chest pain for fear of being "paranoid" and imagining everything. Turns out when I DID end up in the ER due to fainting at work they ordered a 24 hour heart monitor which then in turn caught extreme tachycardia during my next fainting spell the next day. the symptoms you describe probably SHOULD be looked at in an ER or urgent care clinic since measuring your Vital signs, doing labs and a physical exam WHILE you are symptomatic could make all the difference.

Dear @Alittlelost - yes, it is quite usual for dysautonomia symptoms to come and go. I have a few questions: First of all: you mentioned that you had testing done for these episodes. Have you seen a cardiologist? The symptoms you describe should be evaluated to make sure you were not experiencing any arrhythmias or other heart related problems. Do you have the ability to check your BP and HR during these episodes? It would be of extreme importance to check those while you are symptomatic. Also - do you have any symptoms when you are upright or just when you go to bed? It is important to determine what you are doing in the minutes before you go into these "episodes". If you do not already have a home BP device I would encourage you to get one and measure HR and BP regularly during the day AND during the episodes. The symptoms you describe COULD be autonomic related but there are certainly other possible causes to be ruled out first. As I said - i would see a cardiologist first, he may want to order a heart monitor to make sure there are no irregular heart beats at cause ( your PCP can order one ). Since you already had a scoping you may want to consider changing your meal times. I used to have trouble like that at bedtime until I stopped eating 3 hours before bed time and switched to 6 small meals a day instead of the usual 3 meals. This sounds like what I experience when my adrenaline soars and I go into a fight-or-flight reaction. My autonomic specialist checked my neurotransmitter levels and found my adrenaline to be elevated - which conformed the diagnosis of hyperadrenergic POTS. If - after having a cardiology work up - your docs consider an autonomic cause of your symptoms the first step for a diagnosis of dysautonomia is usually a tilt table test. but there are more autonomic tests, usually done by an autonomic specialist. Here is an article from this website that explains autonomic testing in more detail. I hope this is helpful to you to be armed with the right questions to take to your doctor. Good Luck - and welcome to this forum. You have come to the right place to find people that can share their knowledge on anything autonomic!!!!!!!!!!!!!!!!!1

Dear @Jwarrior77 - in me this happens when all of my blood vessels dilate and the heart has to beat extra hard to increase the pressure in order to pump enough blood through the body. Histamines COULD be a cause of this, since Histamine is a known vasodilator. Antihistamines like Claritin counteract this and are considered vasoconstrictors, so that is probably why Claritin helps. Here are some medications that can help for MCAS from the website below. I do not have MCAS and actually suffer from another type of POTS, but when I have allergies or insect bites this happens to me and antihistamines help me. www.thepatientceliac.com/2014/01/04/mast-cell-activation-syndrome-madness/ " Treatment options for MCAS include H1 antihistamines (such as Claritin, Allegra, and Zrytec and their generic forms), H2 antihistamines (such as Pepcid and Zantac), and mast cell stabilizers such as ketotifen and cromolyn sodium."

@Jwarrior77 - I suffer from tachycardia and both high and low BP. According to my ( renowned ) autonomic specialist steroids would push my BP out of the ballpark high, so I and my PCP avoid them at all costs. I would be willing to try a low dose if absolutely necessary but have not had to, thankfully. Yes - if I would take steroids I would go into an adrenaline surge with Hypertension and all the fixings. This would be especially serious for me since I take autonomic seizures when in these flares. So - IMO - you are justified to be concerned about taking steroids, but as with all medications you have to weigh the risks vs the benefits. A low dose MIGHT not be enough to cause serious problems. best wishes!!!!!!!!!!!!!!!!!!

@David heck - bulging veins in hands and feet are quite common in dysautonomia and usually are caused by excessive dilation of blood vessels. It also happens to "normal" people when they are hot ( like after a hot shower ) or after exercise, all caused by vasodilation. I get this frequently when my usually cold hands and feet suddenly warm up. Check your BP when this happens and see if it is low - that often occurs along with it.

I believe it is used for Ulcerative Colitis and if your doc prescribed it for you ( and it is not systemic ) I would give it a shot. UC is pretty serious and may need treatment like that if the benefits outweigh the possible side effects.

@Jwarrior77 - I was advised not to take steroids at all since I have hyperadrenergic POTS and they would cause Hypertension for me. I do tolerate hydrocortisone cream without problems.

Yes @Foggy01, I have. At times, out of the blue, I get a fullness in my left chest ( not pain ) and feel like I cannot breathe deep enough, or as if I cannot breathe sufficiently. It is not shortness of breath per se - just a feeling of insufficient breathing. It may take several deep breaths before I can get that deep, "satisfying" inhalation and still it is not enough. Then I - of course - become focused on my breathing and it gets even worse. When this first happened my doc did all kind of testing, including eventually a CT of the chest and all was normal. My O2 sats are normally low normal ( 95% is normal for me ) without this sensation and it does not drop during these episodes in my case. We never really found a cause of this and I learned to live with it. What I have found is that when I relax my neck muscles my breathing will become sluggish and I was told by my PT that this is normal. I used to get PT for a pinched nerve in my neck and had to actively work on relaxing those muscles, so I am aware of this. Maybe this happens to you since you mention it happens when you relax to go to sleep? I think that shallow breathing like that will naturally drop your O2 Sats, so I would not fret on that. You could ask your doc for pulmonary function testing - they check how deep you are able to inhale and how much your lungs are able to expand when inhaling. That would rule out any true respiratory causes. But maybe just knowing that this happens to others as well could reassure you. Be well!!!!!!!

hello @Joey - you sure get around!!!! I also find that locations make a big difference in my symptoms, and hot/humid or frequently changing weather is the worst. I personally would think that Singapore would be bad for POTS symptoms, but I looked at climate charts of the other states you mentioned and Northern AZ seems to be a good choice. the south gets just too hot in the summer. I guess Colorado would be good as well, depending on the elevation. I live at 3000 feet elevation and do worse when I go down. I am not sure but I believe that the seasonal changes in fall and spring are not really extreme either in AZ, so that would help. I hope you find a suitable place soon 😁!

@nighteyeswolf - compression stockings will have this effect b/c they stabilize your circulation and therefore the body does not have to work so hard to provide blood flow to all of your nooks and crannies. This will calm down your ANS, the heart will no longer need to beat so fast and strong and your BP can normalize. The low energy and brain fog we experience can be greatly improved with compression b/c of this. --- Glad you found relief!!!!

@FileTrekker - this is very interesting. I looked it up and found this online: How does it work? Taurine has important functions in the heart and brain, including supporting nerve growth. It might improve heart failure because it seems to lower blood pressure and calm the sympathetic nervous system, which is often too active in people with high blood pressure and CHF. According to this information it sounds spot-on for the needs of POTS sufferers!!! But I would add that ALL medications, including supplements of any kind, need to be approved by a physician, especially ones that mess with the Sympathetic NS. They can interact with some of the medications we often take. So - please check with your physician prior to starting this supplement.