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I think possible POTS, currently in testing phase


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Hello everyone,

I hope that it's ok for me to post here. I do not have a diagnosis of POTS but I have one medical professional in my care team that has brought up the possibility. I would like to share my story and hopefully get some ideas on how to get my Doctors to consider the possibility and test for thos condition.

I had a baby last summer at the age of 34. For the most part I felt ok after having the baby. But 3 months postpartum I started to have issues with blood pressure rising. I also recall of having problems with periods of time of feeling so unwell that I would have extreme episodes of tremors like I was feverish. I cannot recall much more in terms of symptoms but I did seek help for the high blood pressure issues. Doctors seemed to think I was having high stress and that was the cause. 

4 months later, I started to have issues with high heart rate (130's) followed by extreme dizziness, fatigue, and nausea. I thought I was having a heart attack, went to the ER and checked out fine. This first episode also happened a couple of weeks after having some sort of mystery viral illness that no one could figure out.

I started to have more frequent episodes of heart racing, extreme fatigue, nausea, shortness of breathe, blurry vision and many other symptoms that would last for hours. Since January of this year I have been to the ER 6 times, two of those by ambulance and hospitalized once. By the time I get there I have been dealing with the symptoms for 3 or 4 hours straight. Of course, when I get there and they have me lay down for about an hour, everything calms down and then they say its panic attacks or anxiety. 

I am seeing a cardiologist now and so far they have down blood work and echocardiogram while I was in the hospital. I will be getting a stress test and MRI in June. Cardiologist says it can be a form of SVT. I am waiting on a 14 holter monitor to come back with the results in a week or two. 

So, other the last few months, these episodes have been more frequent and seem to be triggered more consistently. Simply getting out of bed will make my heart rate go up to anywhere from 110 to 150. The reason I have been seriously wondering about POTS is because I have also noticed that my episodes will trigger after a large meal. I told my doctor this and he said that food and heart issues aren't related. Also, I am having internal tremors all the time now, especially when I'm sitting or lying down. 

The more I research it, the more it matches up with these weird symptoms. All the doctors have said panic attacks and anxiety are the cause for it but the anxiety meds don't help and they definitely don't stop the heart racing.

The cardiologist has started me on a beta blocker and that has made some improvement. But I still feel fatigued no matter how much I sleep, dizzy when I stand, and constantly need to sit down and take a break and catch my breath. 

Whatever this is, if it isn't POTS, it's something that is mimicking it I think... Or closely related. I know I have stumped the doctors so far, so anxiety is the go to diagnosis right now. How would I go about mentioning this condition in Hope's that they would at least explore it? I have a PCP and Cardiologist right now, is a neurologist a better choice? Can POTS start out mild and then get more pronounced as months go by?

I just ready to have an answer on what I've been dealing with for 6 months and not have people think I'm crazy. I have been told to seek treatment at a mental hospital because friends and family think it's all in my head.

Thanks for any insight. And I know that medical advice is not allowed. I fully intend on following through with all the doctors involved in my care. I'm just trying to educate myself on the condition.

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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

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@Starrynight  I am so glad that you found us!  Your story is so typical of so many of us with dysautonomia.  I read a portion of your post out-loud to my husband and after every few sentences said "that sounds just like what you went through".   My PCP suggested POTS to me and gave me an article to give to my cardiologist (after I wore heart monitors multiple times) showing only "non-threatening"  rhythm issues.  The cardiologist wouldn't even consider POTS or read the article and handed it back to me while telling my husband to consider a therapist for me.  After choice words from both my husband and me, we walked out and found another doctor.  You are right, we can not diagnose you, but your symptoms are real and any doctor who refuses to seriously consider a disorder so closely mirroring your symptoms should be fired.  The medical system is intimidating and even more so when you feel ill and need them the most.  So it is hard sometimes to remember that they work for you!  As with any one else in your employ, if they aren't listening or following direction, they need to be replaced.  

@Pistol has given you excellent advice on how to proceed and how to (hopefully) manage your symptoms.  I would add a couple of things - sometimes doctors are not familiar with the term dysautonomia, some are more familiar with POTS.  But they all are familiar with the autonomic system and the symptoms caused when it isn't working correctly.  Sometimes, you can get further if you can find a common terms to use for discussion.  Don't give up on a doctor because they haven't heard of dysautonomia or POTS.   They can still be a great ally

I ran into a hiccup when I finally found a cardiologist familiar with POTS who ordered my first TTT.   It was negative.  Luckily, the cardiologist was convinced from my symptoms and discussions with my PCP, that something was going on with my autonomic system.  So even though I didn't fit the diagnostic criteria for POTS, I fit the symptoms for some form of autonomic dysfunction (dysautonomia).  I was referred to a neurologist who had experience in autonomic issues and have been successfully managed since then.   I add this because the MOST important thing is finding a doctor who believes you and is willing to partner with you.  If you have a good relationship with your PCP, they can be extremely valuable in helping you find the right fit for treatment.  My PCP believed in me and trusted my judgement, so she sent a letter of introduction to each new doctor I've had, explaining what my symptoms are, how real they are and her background with me as a patient.  It is sad to say, but a doctor telling another doctor (in professional terms) this patient is telling the truth, this is not anxiety, depression or mental illness, has saved me a lot of time and frustration.  We shouldn't need to have a doctor vouch for us, but I've found that it has helped save me from multiple visits trying to convince a new doctor that I really am ill. 

I agree with @Pistol completely when she suggests that you keep researching, learning and advocating for yourself.  You have already proven that you have the capacity to be your own detective by finding our site and forum.  Keep reaching out for help and guidance and especially support.  It is a very difficult illness for people to understand because like with so many other "invisible illnesses", you can look great, seem great much of the time.  You can look wonderful even when your symptoms are at their worst.  And the fatigue that comes with dysautonomia is a hard symptom for family and friends to understand too.   I hope you will post again and reach out when you need support.  You are not alone in this.  Best of luck in finding a doctor or getting tested and let us know how you are doing.      

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6 hours ago, Pistol said:

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

Thank you! Everytime I find more information and read it to my Husband we both just say how much this condition sounds just like what I am dealing with. I told him that the only time I feel normal is laying in bed and as soon as I get up to get going, it starts back up with everything. I did have a 48 hour holter monitor back in February. That was ordered by another PCP that I left because they weren't even trying to help. It was impossible to get ahold of her or the nurse. After 2 months of her draggin her feet they finally did the 48 hour monitor. A month later after demanding the results, they just said that I had sinus tachycardia and some occasional PVC's and nothing was of concern. I was shocked that several hours of tachycardia was not a concern!

I just hope to find some type of answer because the only person that is believing me is my Husband and child since they witness it. Everyone else just thinks I'm over dramatic and I'm perfectly fine. But I can say that even though the ER doctors didn't seem to think I had a problem, the paramedics were very concerned. They even argued with the hospital! They said that they could see on the monitor that something wasn't right. But of course laying down makes it go away and so I was becoming frustrated with myself that it would torture me at home but be fine at the hospital. I hope my current doctors will be open minded with this. It's hard starting over and finding someone new.

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1 hour ago, Starrynight said:

A month later after demanding the results, they just said that I had sinus tachycardia and some occasional PVC's and nothing was of concern. I was shocked that several hours of tachycardia was not a concern!

Yep - that is exactly what I expected them to say!!!!! Sinus tachycardia and PVC's ARE harmless rhythms, but if they occur every time you stand and go on for hours they are not the everyday sinus tachycardia!

1 hour ago, Starrynight said:

Everyone else just thinks I'm over dramatic and I'm perfectly fine. But I can say that even though the ER doctors didn't seem to think I had a problem, the paramedics were very concerned. They even argued with the hospital! They said that they could see on the monitor that something wasn't right. But of course laying down makes it go away and so I was becoming frustrated with myself that it would torture me at home but be fine at the hospital.

This is what used to happen to me - until I responded to the ER docs " You are perfectly fine, nothing is wrong on the monitor or with your BP" with the suggestion of taking orthostatic Vital signs. As soon as I stood up - BINGO! - HR and BP went soaring. They would then proceed to at least give me IV fluids ( a instant, temporary cure for POTS in many cases ) and send me back to my PCP. I even used to pass out constantly and take autonomic seizures ( witnessed by doctors, on monitor and even EEG ) and they claimed I made it up. For real!!!! 

1 hour ago, Starrynight said:

I hope my current doctors will be open minded with this.

I hope so. Just inform him/her of your suspicion of POTS, what you have found out about it and how your symptoms go along with this condition.  Hopefully your doc(s) will order the proper testing and then agree to refer you to a specialist. 

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Posted (edited)

I'm having a sress test Monday. Have any of you had this during your testing that lead to a diagnosis? I've been calling the nurse and letting them know of my symptoms and they just seem unconcerned. I know the biggest challenge right now is that doctors are avoiding seeing patients if possible because of the Covid-19 crisis. 

 

Today I had a mental breakdown from it. For the past two weeks I have had increasing joint and muscle pain. I am ok if I sit or lay down but as soon as I'm up and mobile, it starts and becomes debilitating. I worked this past week and it was worse each day. As soon as I come home I'm in so much pain and feeling like crap. Everyone just wants to say its anxiety.

Today has been the worse. I wake up in the morning feeling fine. Get out of bed and the unwell feeling starts. It feels like aches from a cold would feel. The longer the day goes on the worse it is. I was trying to clean the house and it just got to the point that I was in severe pain and felt like I was going to pass out. When I check my blood pressure, it's up but my heart rate was about 74 (on beta blockers). I felt like I would possibly pass out so I called my Husband in from outside. He immediately made me sit down and reclined the chair and put my feet up. After 10 minutes my symptoms started disappearing. How can I feel fine lying down but feel like I have the flu when standing/walking? I feel like a crazy person and the doctors seem to act like they don't think any of this stuff is related to each other. 

 

I just hope that the stress test will help them to try and explore with more tests. I don't know how to convince them to explore other options when they just want to throw every symptom into the anxiety hole.

Edited by Starrynight
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@Starrynight I had several stress tests for chest pain related to HPOTS. They tried 2 different times to do an exercise stress test but I was not able to walk on the treadmill that long and my HR and BP went through the roof both times. Then they did a chemically induced stress test 2 times and I passed that ( they inject a stimulating med that gets your heart racing as if you are jogging on the treadmill while you are simply sitting in a chair ). 

Don't worry about the stress test, nothing can really happen. The doctor is right in the room with you and they have you hooked up to monitors. 

I too experience unexplained joint pains and flu-like symptoms at times. I was told that in my case they suspect it being from the dysautonomia. 

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1 hour ago, Pistol said:

@Starrynight I had several stress tests for chest pain related to HPOTS. They tried 2 different times to do an exercise stress test but I was not able to walk on the treadmill that long and my HR and BP went through the roof both times. Then they did a chemically induced stress test 2 times and I passed that ( they inject a stimulating med that gets your heart racing as if you are jogging on the treadmill while you are simply sitting in a chair ). 

Don't worry about the stress test, nothing can really happen. The doctor is right in the room with you and they have you hooked up to monitors. 

I too experience unexplained joint pains and flu-like symptoms at times. I was told that in my case they suspect it being from the dysautonomia. 

I know I will hate this test since they want to get my heart rate up. I just hope this test is worth the torture and helps point them in the right direction.

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7 hours ago, Starrynight said:

I just hope this test is worth the torture and helps point them in the right direction.

A stress test can do 2 things: detect or rule out any blockages or damage to the heart and it can cause your cardiac symptoms ( unpleasant but very helpful in coming up with a diagnosis ) so they can see it happening on the monitor. But mostly they want to make sure that your heart is OK and you don't have any blockages. 

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Hi, welcome to the forum.  We get tons of people posting here who aren't sure if they have POTS, so that is no problem.  So sorry you are going through this.  Positional symptoms definitely are a strong sign of dysautonomia (though doesn't 100% mean you have dysautonomia).   Post-pregnancy is a major time when people develop POTS, so that also seems like an important clue.  Are you seeing a doctor on the DINET doctor list?  If your doctors are stumped or aren't a right fit that would be the place to turn.  You may want to search for a doctor's name on the message board or post about them to see if others have experience because some are better than others.

Food intake (volume and type of food) is most definitely related to dysautonomia, so your doctor is wrong about that part.   If you are triggered after a large meal, it would make sense to start eating smaller meals and also keep a diary of what you are eating.  You may notice your symptoms correlate to certain foods.  Some here have food insensitivities and feel tons better when they cut out wheat or dairy.  You can tested for those, but start by just watching what you are doing at home. 

One other thing to note is that beta blockers themselves cause fatigue.  So if you are feeling really tired that could be because of the beta blockers.  The fatigue as a side effect wears off over time.  You can also make it better by taking at night instead of during the day, though check with your doctor on that before doing. Also check the other side effects of your medications because they often contribute to the problems.

It is interesting that you describe your symptoms as feeling like you have the flu when standing up.  I have never felt that way - the POTS feeling for me is totally unique and like nothing I've ever felt before.  Certainly not like the flu for me.  I felt like I was walking on an unstable surface, or being chased - sweaty, out of breath, scared, but not flu like. 

If you have muscle and joint aches it might make sense to look into EDS.  I definitely have muscle aches but they are not positional.  They're from a lack of blood flow and are constant in every position for me.   Sometimes I feel normal lying in bed but when my dysautonomia is acting up I feel pretty terrible even while lying down.. Stretching, yoga, self massage can be really helpful for the muscle aches.   I would try to do this a few times a week (or daily) if you can manage.  Practicing walking - as painful as it is - also adjusts your body to being in an upright position. 

The stress test is extremely important because it will help detect any problems with your heart.  Everyone's heart rate goes up with exercise that is normal, and not anything to worry about and you are right there with the doctor.  (Remember, millions of people exercise for the very purpose of getting their heart rates up)  if you have a cardiovasuclar problem which isn't POTS, that could actually be something which is much easier to treat. 

 

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So I have an update from the test.

Two days after the test the nurse called and said that the Dr saw some EKG changes and wants to repeat the test but with an echocardiogram. So I will be doing that next week. 

Then today she called again and said that the 14 day monitor showed atrial tachycardia. So hes also setting me an appointment with a specialist in the same office. This specialist is for the electrical part of the heart?

So, I'm surprised but not surprised that he saw some things. I guess now I'm just wondering how serious all this will be.

 

I don't know if any of this will point to POTS or maybe this will be something separate from it. I'm going to try and put together notes of everything I've been through for the visit with the specialist. 

If they can't figure it out they said they would find me someone who will. 

At least now I can feel more confident that this isn't just anxiety.

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@Starrynight - I am glad that you found some answers, although I wish they were better news!!! Thankfully AT ( or SVT ) can be treated with medication or ablation, and your EP ( the cardiologist you were referred to ) will know what to do. And the best news is ( drum roll ) - you may not have dysautonomia 🥳!!! But keep in mind that the symptoms you describe CAN be from POTS, and your EP may not be confident in considering this as a secondary diagnosis. Symptoms of AT are close to those of POTS, except that they do not necessarily include orthostatic intolerance, which you describe. I know of several people who have both - POTS and SVT.  I hope you find a knowledgeable and compassionate specialist and please keep us posted on your progress!!!!!

Here is a list of symptoms of AT: 

Atrial tachycardia may cause the following symptoms:

  • Chest pressure or pain
  • Fainting, also known as syncope, or near-syncope
  • Fatigue
  • Lightheadedness or dizziness
  • Palpitations, which can be skipping, fluttering or pounding in the chest
  • Shortness of breath

It is important to note that some children may not know how to describe what they are feeling during a period of atrial tachycardia. They may have trouble keeping up with other children or realize they are having "spells" and want to sit

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2 hours ago, Pistol said:

@Starrynight - I am glad that you found some answers, although I wish they were better news!!! Thankfully AT ( or SVT ) can be treated with medication or ablation, and your EP ( the cardiologist you were referred to ) will know what to do. And the best news is ( drum roll ) - you may not have dysautonomia 🥳!!! But keep in mind that the symptoms you describe CAN be from POTS, and your EP may not be confident in considering this as a secondary diagnosis. Symptoms of AT are close to those of POTS, except that they do not necessarily include orthostatic intolerance, which you describe. I know of several people who have both - POTS and SVT.  I hope you find a knowledgeable and compassionate specialist and please keep us posted on your progress!!!!!

Here is a list of symptoms of AT: 

Atrial tachycardia may cause the following symptoms:

  • Chest pressure or pain
  • Fainting, also known as syncope, or near-syncope
  • Fatigue
  • Lightheadedness or dizziness
  • Palpitations, which can be skipping, fluttering or pounding in the chest
  • Shortness of breath

It is important to note that some children may not know how to describe what they are feeling during a period of atrial tachycardia. They may have trouble keeping up with other children or realize they are having "spells" and want to sit

I'm more hopeful in answer now and happy that it's not "all in my head" like some have thought. I feel like we have found some of the pieces and are slowly putting the puzzle together. 

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  • 2 weeks later...

Had the MRI and Stress Echo last week. Both came back "low risk" which I was told that it means normal.

Now they want me to see the Electrophysiologist before anything else.

I had a couple of weeks of feeling like things were getting better. I would have a couple of nights of feeling unwell, especially after dinner but overall I felt like it was better.

So, I started to push myself to be more active like I used to be, went outside while it was hot and stayed out all weekend. My Husband warned me to not over do it but I guess I did because at 1am Monday morning I was woken up by a "surge" feeling and my heart rate and blood pressure were elevated. Heart rate was in the 120's which is pretty low compared to my other episodes of 150+. Blood pressure was climbing and reached 167/101 before I was worried enough to go to the ER. I was worried I would get to a stroke level. 

Now, I'm back to like before with feeling crummy. 

I have been trying to find support groups online for the SVT diagnosis that I do have but can't find any good ones. Any ideas?

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I am a newbie here too. I’m so sorry you are going through all of this. I’m like you are I sometimes feel good and so excited I over do. I’m probably in denial too. I am being treated for POTS now by electrophysiologist. I think he misdiagnosed me though. I was diagnosed with SVT had a cardiac ablation and I just read that an ablation can make POTS worse. I usually don’t go on Facebook but I do think there are some good support groups you will find. 

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@Starrynight - I am sorry this happened to you. I know first hand how it goes: first sign of a good spell I try to cram in whatever I have been holding off on doing b/c I know I only have so long before it's "bedtime". That is unfortunately the wrong thing to do, and I mostly try a different approach now. Whenever I feel good I still avoid obvious trigger - that includes being too active. I go back and forth between being active and resting before I become symptomatic ! That seems to make the good spell last longer. And I continue to avoid all obvious triggers. That way I can sometimes ride out a good wave for quite a while. 

I think your BP surges are not related to SVT ( it does not cause hypertension ) so when you go to the EP stress the dysautonomia. He may just get hung up on the SVT and disregard the POTS symptoms - don't let him do that. It is always helpful to make a diary of your BP's, especially when they run high like that. My autonomic specialist likes us to write down the BP's along with the symptoms and suspected triggers during surges like that. This would be something the EP would have to address. 

My sisters - who also have HPOTS - run extremely high BP's when in a surge, despite the meds they take. When they cannot get IV fluids ( helps for the hypertension immediately and stops a surge in its track for them as well ) they use an emergency medication. The one responds well to Clonidine ( my other sister and I cannot tolerate that ) and the other one used Hydralazine. So it would be extremely important for your cardiologist to prescribe an emergency medication to lower your BP when in a hypertensive spell like that. 

Medications For Hyperadrenergic POTS

In hyperadrenergic POTS, there is an increase level of norepinephrine when standing. The following recommendations should be considered:1

Therefore, patients often respond best to agents that block norepinephrine or its effects.2, 3

  • One agent that is particularly helpful is clonidine HCI in either pill or patch form.
    • Start the oral form at 0.1 mg PO 1 to 2 times a day and gradually increase as needed.
    • Once a dose has been found that works, the patch form of clonidine is quite useful. It provides a constant and continuous amount of the drug for up to 1 week at a time.
  • The combination of labetalol and carvedilol works in some patients. Use of only one is less effective because of the potential to make symptoms worse by the unopposed stimulation of carvedilol.
  • Methyldopa has been reported to be useful in some patients, as has phenobarbital.
  • In addition, both the SSRIs and SNRIs (norepinephrine reuptake inhibitors) are useful in select patients..
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I am so happy to have found this site.

I am experiencing so much of what I a reading on here and also struggling to get Dr's to take me seriously.

I also got sick with an unknown viral illness starting early March and ending ( so I thought) in late March. A week of reprieve went by and then I was sick again for another 2 weeks. After that subsided my leg started turning purple when I stand. They were trying to say I had Covid-19 and it was from that but I tested negative 4 times as well as had 2 antibody tests.  They also wanted to shut me up by saying it's post viral syndrome and will go away on it's own. Im 4 months in, I've gone to emergency several times for shortness of breath, rapid heart rate, and palpitations. They run a CBC and send me on my way since I'm fine when laying down. I was just recently diagnosed with POTS. They checked my blood pressure laying sitting and standing and my bpm would raise and blood pressure drops. The cardiologist says she doesn't think that's all that is going on and not the cause of the discoloration in my leg. I'm also experiencing some stomach and esophageal dysmotility and really bad GERD (something I never had before) which is the scariest part of all and I don't know if it's all related and neither do the doctors. Ive lost 30 lbs and I am on a liquid diet due to swallowing difficulties. It all seems to be getting worse. Has anybody experienced this?? Is it15924159744271353137488344724931.thumb.jpg.38e81040e8bf4a36df49708a3d99ab8d.jpg related to POTS? Perhaps a different type of Dysautonomia?

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Tomorrow is the EP appointment. I hope this doctor is good and will listen.

 

Something that I have been noticing for weeks is that I bruise very easily on my legs. I don't know if its happening while I'm standing for longer periods of time or what. I know I'm not bumping into things (if this is caused by hitting anything then it's barely touching me). I wear pants through the week at work, (desk job), and I wear shorts on the weekend. So I dont even notice new bruises till the weekend. This is one that has went from a yellow color yesterday to now a redder color. It's about 2-3 inches in size.

 

The easy bruising is new in regards to something I've noticed in the past 12 months. It started on my arms but now its mostly on my legs. I have 5+ bruises right now.

 

Based on what I've read that this could possibly be linked to dysautonomia. 

 

20200621_120446.jpg

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