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Hello @RM17 - welcome to the forum, and thank you for sharing your story!! I am glad you were diligent in finding answers and were lucky to find a knowledgeable physician. Having a doc you can trust is almost half of the struggle!!! - A few things I would like to point out: first of all: you are young and otherwise healthy and the early treatment you receive probably will help a lot. I know several young people with a similar story as yours - and almost all of them had to stop college for a few semesters but then improved completely and could pick up where they ;eft off. I wish that was universally true!!! Unfortunately there are several factors that influence the prognosis of POTS, and what type of POTS or what underlying conditions we have directly plays into the severity of the symptoms. POTS is a chronic illness - however some cases ( especially early on in life ) can be controlled. I am glad you seem to fall into this category!! It can be managed in many cases but it is not always as easy to find the right treatment as your doctor makes it out to be. I have two kinds of dysautonomia ( HPOTS and NCS ) and treatment took many, many specialists with different opinions on POTS before I found a knowledgeable autonomic specialist who worked with me for years to find the right treatment. For many patients the salt/ water/ exercise regimen is either not enough or they are too sick to follow it. I am not sharing these thoughts to take the wind out of your sails ( nothing would be further from my intentions! ) but rather to point out that many, many patients with POTS WANT to be better and DO follow the suggestions of your doctor - but for many people this is not enough. There are many physicians who accuse patients with POTS of being noncompliant if those go-to treatments do not work because in their opinion this should be ENOUGH to fix it. And often it is - but not as often as they think. So - I have no doubt that you can greatly improve since you suffer from post-viral POTS, are young and healthy AND have found a doctor acknowledging POTS, and I wish you very well. But it is not a reality for all POTS patients. Be well, and again - thank you for sharing your good news!!!!!

@Ed123 - I used to have a lot of nausea with my POTS symptoms, as well as bloating and diarrhea. A coarse of many GI medicines took care of it. Now I only use PPI and Zofran as needed and I hardly ever need the Zofran. Bloating and burping after eating CAN be caused by swallowing air when chewing or drinking - could that be a reason?

Hi @Viktor - in my case the underlying cause of HPOTS is suspected to be genetic, since it runs in 3 generations of my family. I too had symptoms since childhood but it did not get triggered full force until later in life. The symptoms that made me disabled are fainting, seizures and inabiltiy to concentrate as well as fatigue. In my case BP goes both up and down, so I faint when it drops too fast and I have seizures when the blood vessels constrict so severely that there is not blood flow to the brain and the BP shoots up really high. Before proper treatment this would happen easily when i stood up, walked or even simply heard the phone ring!

Hello @weeamanda - welcome to the forum!!! Yes, your symptoms do sound a lot like POTS. Here is a quote from the link below: Inappropriate Sinus Tachycardia (IST) is a condition in which an individual’s resting heart rate is abnormally high – greater than 100 beats per minute or rapidly accelerating to over 100 beats per minute without an identifiable cause; although small amounts of exercise, emotional or physical stress are triggering factors. https://www.heartrhythmalliance.org/aa/us/inappropriate-sinus-tachycardia So clearly - in your case the resting HR is low, so it sounds more like POTS, in which case the HR raises above 120 or at least 30 BPM within 10 minutes of standing. Nausea and dizzyspells also point towards POTS - IST does not commonly cause these symptoms. It is not uncommon for cardiologists to confuse the two, since many physicians are unfamiliar with the complicated mechanisms of POTS. Here is an article you could forward to your physician ( it is very medical, so not easily understood by many patients ) https://www.ahajournals.org/doi/pdf/10.1161/jaha.113.000700#:~:text=Patients with IST have a higher sympathetic contribution,11 bpm%2C ANOVA P%3D0.108). IHR was not significantly It explains in detail the differences between the two disorders. I am not sure what type of physician your cardiologist is but I have always shared articles with my physicians if they did not understand POTS. Some were offended but most were interested and appreciative. I personally would email or mail this article to him and make an appointment to discuss POTS. Once you provided literature that explains the difference he really cannot brush it off. You can also call his office and ask to discuss the difference between IST and POTS. No - personally I would not be happy with an IST diagnosis b/c there is more to POTS than just a high HR. In order to get proper treatment for all of the symptoms ( which can change over time ) it is important for physicians to understand how POTS affects the body ( many body systems are affected by autonomic dysfunction ). In the beginning of my illness the doctors addressed each symptom separately and my medical history looks like a medical dictionary b/c each symptom is listed as a diagnosis. But POTS explains all of my symptoms and treatment is more effective when all symptoms are considered together. Keep advocating for yourself - you are doing the right thing looking for answers and you don't need to be kept quiet with an IST diagnosis. See your cardiologist and discuss your concerns and questions.

Hello @Viktor - that is great news that you have been able to manage mostly on your own!!!! And whether or not you receive specialized care - bad days are still a reality. Progression of symptoms is common in HPOTS - for me the symptoms have changed as my body aged. I am fully disabled from POTS, homebound and sometimes bedbound, despite my excellent specialist's care. But with the proper meds ( that I would not have had without the specialist ) I would clearly be bedbound permanently. The thing with seeing a specialist early on is that with proper treatment you may be able to maintain your independent life ( not saying that you necessarily would get worse ). I spent the first 4 years of this illness fighting it, working despite the symptoms ( and despite the advice pf physicians, employer and family, who wanted me to stop working due to my severe symptoms ) and inadvertently made the illness worse. So maybe getting expert treatment BEFORE your symptoms get so bad that they affect your quality of life may help you to avoid this scenario. In any case - I wish you well and hope you find affordable care 😊!

Hello @Viktor - yes, unfortunately specialized health care is expensive, it is in the US as well. I had to pay 350 dollars for a specialist visit that was not covered by my insurance, so this is normal. Unfortunately rare diseases cost a lot!!!! ☹️

Hello @Viktor - POTS is generally diagnosed by an increase in HR of 30 BPM or more ( or above 120 BPM ) within 10 minutes of standing, without s considerable DROP in BP. HPOTS can cause increase in BP upon standing - but there are other conditions that can do that too. Considering that you are taking a beta blocker it may affect your HR. You really should take these readings to your GP or other treating physician b/c this forum is not able to read these results. HPOTS often gets diagnosed with serum norepinephrine levels but I don;t think that this test is mandatory for diagnosis.

Especially with dysautonomia every person reacts differently to medications or supplements. Only YOU can tell how you feel when you take them. That is why a diary can be helpful.

Hello @Brianna - have you told the prescribing physician about how you feel? Low BP can cause hot flashes, and beta blockers can make you feel fatigued ( although usually this goes away after a few weeks ). If your HR and BP are too low on the Propanolol you should inform your doctor - he/she may want to either decrease the dose or switch you to another medicine all together. I tried several beta blockers before I found the one I tolerated.

In my case I am on a LOAD of meds and each one was added to the last one, started on the lowest available dose and then slowly increased. That is how i know which one helps with what, for example: I am on Carvelidol 25 mg, which helps immensely with tachycardia, and we slowly added Diltiazem ( increased from 30 mg to 180 mg ) which has really lowered my BP. Methylphenidate has improved my brain fog and SSRI has improved mood and also some of the POTS symptoms. I take more meds and each one helps for a specific symptoms. It is very important to keep track of what symptom the med is supposed to help and if it does. Some medications can help for several symptoms. Keeping a diary that lists each med you take, when you started it and how it affects you is very helpful for you and your doctors. It also will help you remember what med you did NOT tolerate. I have tried tons of meds for POTS that did not help or I could not tolerate and having a record of this is very helpful.

Hi @H. Potsland, Oregon - welcome to the forum!!! I have HPOTS and was diagnosed by a renowned autonomic specialist ( I had already been diagnosed with NCS by TTT by cardiologist ) by taking neurotransmitters ( catecholamines ) blood test after 30 min rest and then again after 30 minutes mild upright activity. My levels were both elevated. --- I believe the 24 hour urine test your doc ordered may be to check for pheochromocytoma, a benign tumor on the adrenal gland that can cause similar symptoms to HPOTS. It should be ruled out before suspecting HPOTS, so your doc seems right. So, for me the diagnosis was made by symptoms ( including elevated HR and BP upon standing ), TTT and serum catecholamines. Of course I had echos and stress tests and EKG's etc done as well but they were normal. I hope this helps clear up some of the confusion? Good luck - 😉, and be well!

@Viktor - monitors that measure the BP at the wrist are notorious for incorrect readings. The pulse in the wrist is often detected at a different pressure b/c it is so far from the heart, and many things can influence circulation in the wrist. Cold, Heat, exercise, stress ... all of these can change the BP between heart and wrist. So it is best to switch to a BP monitor that is applied closer to the arm, like the upper arm. Still - even a good digital upper arm device can be a lot different than a manual one.

@Viktor - it is normal for our BP to change, however the changes you list are a bit drastic. What kind of measuring device do you use? Digital readers are known for their inaccuracy, so I would recommend you check you BP with a manual cuff and stethoscope to compare. Here in the US you can get your BP read manually in any retail pharmacy and of course at your doctors office or clinic. Simply bring your BP reader, take your BP and then have someone check it right after manually. I had several digital readers and they all failed compared to manual cuffs, so I use a manual cuff at home.

@Viktor - is it possible that the symptoms you experience when entering a bus stem from anxiety? Did something happen to you when in a bus that you say the NS remembers the breathing problem? It is a know fact that anxiety can cause shortness of breath - but also that if you are afraid that a symptoms returns on the bus it easily will. That will also explain the fact that you "forgot" to remember the symptom when you were on the phone.

Well - there are several theories behind this symptom, in some cases it is just a severe form of syncope, with tremors etc caused by loss of circulation to the brain. In my case they are believed to be caused by sudden and severe constriction of the blood vessels in the brain, cutting off the blood supply. My seizures look like regular grand mal seizures and I am unconscious during them. I gain consciousness relatively quickly afterwards b/c when the vessels release the blood rushes back in and I "wake up", like after a faint. My BP is usually high before and during these episodes, whereas it is low when I faint ( I suffer from HPOTS and NCS, which have different mechanisms ). --- The tremors you describe happen to me when I am either right before a faint or seizure or when my adrenaline is very high. Nope, doesn't work necessarily. I used to drink a lot of fluids without any effect. I would pee it right out, ran right through me. Most physicians think that the IV fluids are to correct hypovolemia, or dehydration. This is not the case in POTS. The ANS can cause the body to loose the ability to properly dilate and constrict the vessels, which in turn causes the chaos we experience. IV fluids will create a steady pressure within the vessels ( think a steady stream through a hose ) and therefore eliminate the faulty signal to constrict or dilate. The fact that it also restores volume to a normal level will keep the positive effect for a while. We can drink all we want - it will not counteract the ANS dysfunction as IV fluids do. This is one of the reasons my PCP finally agreed to a port. I used to have to go to ER frequently when in a flare and despite my seizures and fainting ( even while in the ER ) they would refuse IV fluids b/c " I could drink". My PCP does not give IV fluids in his office, so he would send me to the ER. Many times they rolled their eyes when I came in, contributing my symptoms to attention seeking or female hormones. They even did a drug screen b/c they thought I was high!!!!!! My autonomic specialist would send me a prescription for weekly IV fluids for a month during flares and I would get those in an Infusion center 1 hour drive away. But when I still needed them during flares and ER would refuse he finally allowed for the port and I have not been in ER for POTS ever since. I barely ever even get seizures or faint anymore!!! Nonsense!!! There are no studies in Germany about this either and both of my sisters, who live there and have POTS, get IV fluids through peripheral access ( needles in the arm ). One sister gets them as needed and the other sister gets them regularly at her GP's office. They both benefit greatly from them. My one sister comes to the US to see my autonomic specialist and now does teleconference with him, her and her GP. It really drives me crazy when physicians are too scared to order a known treatment b/c their country does not support them. Whatever happened to treating the patient first? If there is no study in the UK but they know that it helps patients in other countries - why don't they do a study? I am sorry you are going through this. Have you tried compression hose? This can sometimes help. Also - along with the extra fluids it is recommended to also increase your salt - I am not sure if you are already doing this ( more salt than is in electrolyte drinks ). Is there an autonomic specialist in your country? There are several doctors treating POTS listed on our physician site .

Yes - I get too weak to get up, and very very fatigued - at the same time wired. I am literally unable to walk - I have to CRAWL to get to the bathroom during those spells. To me it is more that certain triggers create the perfect storm of symptoms!!!!

Hello @cmep37 - yes, I have had similar symptoms in a flare, and i am very sorry you are going through this for so long now! I guess I am "lucky" - I usually faint or have a seizure when the panic gets too severe, and that somewhat breaks the circle, at least for a while. I used to have to be admitted to hospital for this, and a day of IV fluids calmed everything down. I would be in ER or in hospital every 6-8 weeks for years, until I had a port implanted and now I get IV fluids up to 3 times a week at home - if I get flares now they are mild compared to what they were, and I barely ever faint anymore. When I was bad like you are I could not walk or think, words were a jumble, my heart would beat out of my chest, i could not catch my breath and I too had very bad nausea and diarrhea. As soon as they hooked me up to IV fluids everything stopped, it was really weird. They always were so amazed by this - I was literally crawling in looking like I am about to die, and after 10 minutes on fluids I was sitting up, color back in my skin, talking and laughing, and I could stand!!!! We had tried many meds and other things to stop these flares but only IV fluids help me. They are a known treatment for flares in POTS and both my autonomic specialist as well as my PCP would prescribe them as a standing as-needed order. All I had to do was go to an infusion center ( or some urgent care centers ) and give them the prescription. After using them as a treatment only we went to weekly during flares and now I get them preventative up to 3 times a week - and I am soo much better. If your doctor is willing ask him to try them. With your HR and symptoms you are certainly justified to go to ER, but you may not be comfortable doing that, especially during corona. Here is an article that explains this known POTS treatment: https://pubmed.ncbi.nlm.nih.gov/28185102/ I hope you soon will feel better!!!!

@misseb - I get these symptoms when my POTS gets triggered and in my case these symptoms are triggered by cerebral hypo-perfusion ( not enough blood flow to the brain ). For me this is due to either constriction or dilation of blood vessels, causing not enough blood to reach the brain. The symptoms are generally considered as presyncope - near fainting. And yes - they can last hours and even days, whereas most physicians think of presyncope a temporary state. My autonomic specialist has explained this mechanism to me and IMO these are totally POTS related.

@Random-Symptom Man - thank you for the update!!1 I am happy that the cocktail is helping you and I hope it continues. I too was on B12 injections for years and they helped a lot, I recently stopped them b/c my B12 levels were high ( above 1000 ) and so far I have not seen a difference to the negative since stopping the shots. Best of luck!!!!

Dear @merkat30 - I question the accuracy of the BP equipment that took the reading you posted. I do not think that you would be capable of actually having a diastolic BP that high. No doubt you were hypertensive but these digital BP readers are notorious for taking inaccurate readings when your BP is either too high or too low. I found that to be very much the case for me, I only use a manual cuff since several digital ones were consistently incorrect when I rechecked readings manually. If possible I would get a different, more accurate machine, or get a manual one. Most Retail pharmacies can teach you how to use one correctly. I too have both high and low BPs and could not at all tolerate Clonidine, but we are all different. Be careful!!!

@sfthriller - HPOTS is short for hyperadrenergic POTS, excessive sympathetic activity causing high adrenaline levels. You would not be able to see vasospasms in a scan, my coronary spasms were found during a heart cath and the spasms in my brain that cause seizures were caught when I passed out during an EEG. I had my first port put in 2 years ago and my symptoms and high BP have GREATLY improved. A port usually lasts 5 years but I just had my third one b/c the first one was put in crooked and had to be replaced and the second one ended up getting pinched off, so I had a third one placed this month. Thsi is highly unusual, though, most ports are good for a long time. The needle and dressing get changed once a week by a nurse that comes to my house ( I am homebound ). Most docs do not want to consider a port b/c there ARE risks associated. But I am a very strange case and am medication refractory as well as I kept passing out and taking seizures and all of the falls caused a risk for injuries ( which I had a lot ). Since the infusions I rarely have those episodes anymore. Before the port I would go to an outpatient clinic to get weekly infusions, some clinics or urgent care centers or infusion centers do them on a outpatient basis. They stick a needle in your arm and remove it when you leave - that may be a better idea if you consider trying infusions. Regarding infection: no, I have never had any infection from my port, neither have I had a blood clot. And I really put my port to use!

@sfthriller - a couple of things you mentioned in your post made me suspect your problems with headaches could be from excessive vasoconstriction. You mention cold feet, tachycardia, headaches worse with standing and improvement of headaches and POTS symptoms from IV fluids. This sounds like vasospasms to me. --- I have Reynauds syndrome in my feet as well ( constantly cold feet ), have HPOTS ( caused by blood vessel constriction due to sympathetic overcompensation ) and have Prinzmetal angina - chest pain caused by sudden and severe vasospasms of the coronary arteries. I also have high BP from the HPOTS. The reason I find this relating to you is that many people with HPOTS also suffer from migraines, and these often are due to vasospasms as well. In my case it is coronary arteries that spasm - in your case it COULD be the vessels in the brain? In my case when my brain vessels constrict they do so very suddenly and severely and I have seizures from this. It could be that you suffer from just constantly constricted vessels, like you do with your feet. What has helped me a lot with the excessive constriction is calcium channel blockers, as they work by dilating the vessels. And i have a port and get IV fluids several times a week at home. The fact that you respond so good to IV fluids also points in the direction of excessive vasoconstriction. The IV's not only provide volume but they also create a steady pressure in the vascular system, therefore counteracting the ANS's urge to constrict. It is essentially like running water full force through a pinched hose - this can "unpinch" the hose. Have you ever tried calcium channel blockers? Also - what helped me was nitro glycerin patch, it also relaxes blood vessels but i had to stop it b/c it dropped my BP too low.

Hello @Ed123 - welcome to the forum, and good job taking care of your POTS symptoms with the above mentioned treatments!!!! -- Yes, you CAN loose a lot of electrolytes when you sweat excessively, and sodium is only one of them. That is why it is important to replenish your electrolytes when you sweat - such as with sports drinks etc. You can see your doctor and he/she an easily check your electrolytes with a metabolic panel -a lab test that measures them. But if you are uncomfortable seeing your doctor you may be able to just call and ask to have them checked instead of going to the office. Often by replenishing them with mineral rich foods and liquids you can correct any imbalance, such as bananas, nuts, eggs, veggie broth, whole grains etc. But it is always a good idea to check with your PCP, even if by phone. Be well!!!!!

My husband takes Verapamil, which is different than a beta blocker. If the high HR still happens despite the beta blocker I would have him return to a cardiologist to maybe try another type of medication

Dear @merkat30 - I have HPOTS as well as NCS, and I suffer from BOTH high and low BP's. Does your BP increase when standing? That usually happens with HPOTS. With me it depends on which part of the ANS is dominant - sympathetic = high BP, parasympathetic = low BP. I am on high doses of beta blocker and calcium channel blocker to combat high BP but cannot tolerate decreasing it when BP is low. When you say your docs want to try a high BP tablet - do you mean a tablet to make your BP lower or a tablet to make it higher??? Is your BP low when you have HyperPOTS symptoms?