Yes, you most certainly can have POTS without fainting, in fact the majority of POTS patients do *not* faint; fainting is not part of the diagnostic criteria for POTS. See here for the diagnostic criteria:
As to whether you can rule out POTS by yourself, the answer to that is two-part. First, POTS is partly a diagnosis of exclusion. POTS isn't really "ruled out" so much as a patient first meets the diagnostic criterion for POTS, then other plausible explanations for these signs/symptoms are ruled out. If the deconditioning preceded the onset of the POTS symptoms, that could be a likely culprit; for example, patients who have been on prolonged bedrest due to injury/illness may exhibit signs/symptoms similar to POTS. If it is due to deconditioning, this would rule out a diagnosis of POTS, and treating the deconditioning will resolve the problem. If however, the deconditioning chronologically followed the onset of the POTS signs/symptoms, which sometimes occurs as POTS patients reduce their activity level dramatically in response to fatigue, exercise intolerance, and profound orthostatic intolerance, then this would not necessarily preclude a diagnosis of POTS.
The second part of the answer as to whether you can rule out POTS by yourself, in my humble non-doctorly opinion, is simply no. There are medical tests which need to be run to check for various possible causes of your tachycardia which you obviously can't do yourself.
I notice that you mentioned your resting BP but didn't list a standing BP, though you said you can feel your BP dropping. Do you know what the actual value of your standing BP is? This might be enlightening. What conditions are your doctors trying to rule out at this point? Is POTS being considered? What tests have been run, and what additional testing are they planning?
I'm sorry to hear that you haven't gotten any relief so far. Are they treating your anemia? Is the physical therapy going okay? I hope you start getting more answers and more relief soon. If you give us more information, maybe we can give you some more specific answers. In the meantime, you may find some relevant reading material in some of the articles here:
I have POTS and my BP can be and is all over the place, I have been told to ignore my BP
(I also have had a head to toe check to make sure I was ok) and not to medicate it.
I wanted to make mention that you think anxiety is an issue, one of the symptoms of POTS is anxiety. I had been told I had anxiety issues for over fifteen years, the first time out of the blue and happened in connection with nausea, vomiting, and dizziness.
You mentioned BP numbers what about pulses?
Sorry, perhaps you didn't read the content of the first link I gave you all the way to the bottom, or aren't familiar with the medical terms. It certainly does mention fainting:
"While pre-syncope is common in these patients, only a minority (~30%) actually pass out."
That's from the section by Dr. Raj at the bottom. Syncope is medical jargon for fainting. Pre-syncope is almost-fainting.
An immediate fluctuation in blood pressure upon standing (within the first 20 seconds of standing or so) is actually normal and healthy; that's what it takes a healthy person's body to compensate for the gravitational displacement of blood. You can read about that in the Grubb POTS article in our further reading section that I linked at the bottom of my post above (it's the second article; the relevant section is "Normal Response...). You should take your standing blood pressure about 2 minutes after you first stand up, once it has had a chance to level out. That's the accurate reading. However, as it says in the first link I gave you, with regard to a POTS diagnosis, blood pressure changes upon standing do not rule in or out POTS. Upon standing, POTS patients:
"may display no change, a small decline, or even a modest increase in blood pressure."
Regarding heart rate, as it also says in the Grubb section in the top of that link,
"POTS is currently defined as the presence of symptoms of orthostatic intolerance associated with a heart rate increase of 30 bpm (or rate that exceeds 120 bpm) that occurs within the first 10 minutes of standing or upright tilt"
POTS and anxiety are frequently confounded diagnoses. One surefire way to know the difference is to get a tilt table test. POTS itself can cause physiological symptoms akin to those of anxiety; however, there are patients who have both POTS and anxiety disorders or who may have an anxiety disorder that presents quite similar to POTS.
You point out yourself that you have other factors that very well may be causing your symptoms; these need to be addressed. If I'm understanding correctly, you have already been diagnosed with POTS by a doctor, but you think this may be the wrong diagnosis? Is this correct? What treatment regimen are you on? You mention anemia; is this being treated? You also say you need more fluids; are you not able to meet your hydration needs orally? How many liters of fluids do you drink daily? How much sodium do you take in daily? (I see you say it isn't helping, but it's good to know how much.) Are you on medications other than cardizem? Did you have a TTT as part of your diagnosis?
(From the Grubb section of the first link I gave you.)
Did you mean Kasper? I don't want them to skip a post if it's meant for them???
I on the other hand can not shake this brain fog and can't get out a coherent idea... meant to also say that I do not normally faint and have been diagnosed with POTS so yes you can have POTS and not faint. I just have the lovely room spin think I am going to throw up and wow now I can't see aka Pre-syncope
I wanted to ask you about the SupraVentricular Tachycardia (SVT) that you mentioned -
How were you diagnosed with it? Was it more than just an EKG?
SVT is just a broad term given to fast atrial arrythmias, when it is impossible to count the P waves on a EKG.
Your doctor should refine your diagnostic of SVT. He needs to specifically find out the arrythmia that you have. Very important for treatment outcome.
Example of arrythmias falling under SVT are - Atrial Flutter; Multifocal Atrial Tachycardia or Junctional Tachycardia.
Any of those can give you symptoms like the one you are describing - HR between 100 to 200 beats/minute, dizziness or low BP.
For the Cardizem your dose of 120mg/day is a tad low, as the usual dosage range between 180 to 360 mg/day. You should ask your MD if it is really the best antiarrythmic for you, if yes, maybe he could bump it up a bit to see if it helps your symptoms.
Maybe he was conservative because of your weight.
You also mentioned that your resting BP can be '85-90 / 55 60 range', has the Dr told you that Diltiazem should be witheld if systolic BP is <90 or diastolic <60?
Can you monitor your BP at home?
I just realized, looking at your last post, that you are on TPN (is it through a central line?); I am not surprised that you are having such a hard time :-( and feeling all over the place.
I really wish you the best on your road to recovery, and please keep us posted :-)
Did they not call the SVTs isolated incidences then? Iron deficiency and deconditioning can make your heart work harder- but if you get those two taken care of, and you still have a problem with your heart rate jumping by 30 + points just from standing up or doing minimal activity, you might ask your doctor for a tilt table test. Do you know what's causing the iron deficiency?
Also, in one post, you said you could use more fluids & in another, you state you are on TPN and get all the fluids you need?
You're saying your very low on hemoglobin (HGB) then? Was looking some about Crohn's- it looks like the aim is to knock down the inflammation. I saw that if other drugs aren't working well, infliximab (Remicade) is a powerful new drug that can only be used on a short term basis that seems to help knock inflammation down. Have you heard of it? It looks like it can have serious side effects though.
I don't believe tachycardia would cause inflammation in the bowels. Did you read that on a credible medical website or did a specialist tell you that?
But your low hemoglobin I believe could cause tachycardia. And low oxygenation to the tissues is never a good thing for them.
Yes, i meant Kasper. Brain fog strikes again. Sorry. This is what happens when two screen names start with the same letter, LOL. Looks like we're going to need a larger alphabet to accommodate my brain fog!!
well it turns out i might be a total goofball.
I dont think im having heart rates of 160....
these domb heart rate moniters only say its so fast because it thinks the second you move the heart rate is 160.. but it takes a WHOLE minute to calculate. obviously the best way is old fashion manual checking.
POTS is based on if your heart rate goes up by at least 30 beats per minute from laying-to standing & standing should be at LEAST two minutes before taking your pulse. A tilt table test is the best way to test about POTS for the pulses and blood pressures, where they do a series of measurements, if POTS is suspected. Another additional test to determine POTS is a standing plasma norepinephrine test that is I believe 600+. I was diagnosed with just the tilt table test myself.
What were your pulses (though your therapist didn't give long enough of interval with standing to take it, if they did take it, if they indeed waited only a single minute)? And you listed one BP- what was it laying and what was it standing? Are you getting intravenous iron therapy?
Don't give up on yourself! I had to travel from Florida to Minnesota to get anyone to begin to give me answers. This was after 8 doctors in different specialties seen on a regular basis, a month in the hospital (and all the doctors and medical staff I saw while in the hospital above the original 8), several home health nurses, several home health PT's and 2 psychologists......ALL between September and April when I finally saw someone at the Mayo Clinic. I now carry around photocopied pages from a medical school book that explains what symptoms autonomic disorders can cause, what the tests are to diagnose them, and what POTS even stands for. These people go to school for a LONG time and still look at me with a "deer in the headlights" stare when I tell them what I have and most of them have looked over the information and say what now.
My understanding is that deconditioning can cause you to have POTS-like symptoms but....first comes POTS and you don't feel like doing anything and then you end up "deconditioned"
Did you have heart rate issues before you ended up spending two months in a recliner?
I have had trouble getting the medical community here at home to NOT focus on my blood pressure and when they start reading out multiple numbers I get confused.
I also have great regard for PT's but they are not doctors and should not be telling you what you can or can't have without the correct testing in my opinion.
I may have read this but have forgotten, so I apologize in advance if you have said it, has a doctor mentioned POTS or any autonomic disorder?
Another symptom many people who have autonomic disorders have is "brain fog", for me this means I get easily confused, I forget everything, post something and forget the main thing I want to say, start sentences and forget what I am saying or can't get the words out. It can be very frustrating, depressing and anxiety causing.
Be gentle with yourself and keep asking eventually something will click and then if you are like me, you will forget it again :-)
So what was your blood pressure when you stood up? You mention the blood pressure when you sat back down. I have POTS and the blood pressure can quickly return to normal with sitting.
You, not the therapist got a pulse of 115 after standing a minute? And what was your pulse before you stood up?
Did the therapist neglect to take your pulse laying and standing and only took your blood pressure when you sat back down? If they failed to do the home orthostatic test properly, shame on them! Waiting one minute is not long enough- one should wait two to three minutes after standing up from a lying down position before first taking the standing pulse & blood pressure.
Well, the majority of people with POTS don't pass out and the pulse is what you want to be looking at. The body tries to compensate with the increased pulse and sometimes the blood pressure will go up, like it does at times with me, because the body is over-compensating. Why not lay 10 minutes, then take your pulse. Then stand two to three minutes and take your pulse and tell us what your numbers are?
Okay, I have an article that says normalization is supposed to occur in about 60 seconds. But waiting that extra time is what I believe I was advised to do by a doctor in the past, giving the body even more time to normalize. If it does not normalize after waiting two to three minutes after standing, and your pulse is still up by 30 or more compared to your laying down pulse, you've got more grounds to be having your eye on pursuing a diagnosis of postural orthostatic tachycardia syndrome, although your deconditioning and anemia can cause tachycardia problems and need to be dealt with as much as possible so it won't convolute the picture as much.
Another criteria Vanderbilt uses for diagnosing POTS besides a positive tilt table test is a standing plasma noepinephrine of a minimum of 600 pg/ml. No one has tested me on that latter one, though I've had various catecholamine related tests come back abnormal at various times.
Not being a doctor I don't want to say what it is or not. What I DO know is that deconditioning can cause your pulse to increase when you sit or stand and that it can mimic POTS.
I looked over this paper I was given that was written by Phillip Low M.D, He's at the main Mayo, and one of the neurologists who has been doing research on autonomic disorders for years. It's for their doctors to use when giving patients advice, it's not a published brochure, so I can't point you in its direction but it says that exercise especially leg strengthening is important. The leg muscles squeeze the veins and help pump the blood back up.
My PT gave me large pieces of elastic that I could use to do different exercises with sitting down. It can help to just sit and squeeze your leg muscles and hold them for a count of 15-30 or what ever you can do. Or sit and pump your foot pushing your toes into the floor and then pulling them up.
I also have counter maneuvers to do to slow my heart down, has your doctor or PT shown you any?
Don't give up!
After a major surgery, I had a surgeon instruct me what to do to aid in my recovery and I think my health in general and I did it for quite a while. I might not remember perfectly the progression, but it was something like this: She had me walking just leisurely in the hospital and subsequently at my home three minutes twice a day for three to four days. Then she wanted me to increase to five minutes twice a day for three or four days. Then 10 minutes twice a day for three to four days, and so on until I reached an HOUR twice a day of leisurely walking in my home.
I believe it helped me in my recovery from surgery, as exercise can benefit in so many ways- getting the feel good endorphines going, helping build up stamina, helping bowel function, helping circulation which speeds up healing.
But you getting the hemoglobin up will make it easier, because having anemia makes a person feel exhausted and you can get short of breath so easily with the lack of oxygenation caused by anemia. Taking deep breaths while I sat on a doctor's exam table is one thing a doctor had me do prior to being diagnosed with POTS because he didn't like how fast my heart rate was. That slowed it down to his liking. You might try it while sitting and see if slows your sitting pulse some.
Oh ok! I KNOW pt helped ME. I have been feeling really bad the last month and have not been up and moving like I was and my heart rate has gone back up again and I feel worse then when I do something.
After a weird reaction to a drug left me hospitalized and not able to move my legs for three days, I got weaker and over a month could not walk, slowly I was able to use a walker then a cane, and then just me. I got up to 15 minutes outside and then it got too hot outside.
I keep doing as many exercises as possible as often as possible and the more I do the better I feel. The ONE patient education pamphlet the Mayo has on POTS has two case outlines and one person runs five miles a day and if she does not she gets really sick. Many of us can't do this but it gives me hope that someone runs this long and hard and doesn't drop from doing it. (I am sure she did not start out at five miles so don't overdo it :->)
Keep doing what you can and set mini goals! You can reach them!
I'm sorry I dropped out of this conversation for a minute. I think there is a distinct likelihood that given the features of your primary diagnosis, the POTS-like-symptoms are fully explained by that. I FULLY believe that you are experiencing these same signs and symptoms of orthostatic intolerance, but it is part of the diagnostic criterion of POTS that if it's due to something like what you are experiencing, POTS will either be excluded as a diagnosis inherently OR at most you will be diagnosed with secondary POTS (secondary to your primary diagnosis). Treatment of this secondary POTS would be focused on controlling your primary diagnosis, which it seems you've already got your doctors working on. It also sounds a bit like the medical professionals around you are a little shaky on the diagnostic criteria of POTS and how to take orthostatic pulses and pressures; I'm really not trying to insult them in any way as this is EXTREMELY common. I don't think these things are taught (or taught well) to most medical professionals.
Treatment of secondary POTS/orthostatic intolerance can be two-fold: symptom management of the POTS/OI and treatment of the underlying cause/primary disorder. It sounds like your docs are already doing everything they can for your digestive condition. Focusing on leg exercises in PT would help what is called "skeletal muscle return" of blood to your heart (you can kind of think of it as your leg muscles squeezing the blood back up like a tube of toothpaste being squeezed), which should address the deconditioning and hopefully will get your symptoms in better control. Leg exercises can also be done while sitting or lying down if doing them whilst upright is too strenuous or triggers too many symptoms in the beginning.
I really hope that the PT helps you a great deal. I think that if they can get your other health problems under better control, you will be able to improve or even resolve these orthostatic intolerance symptoms in time! You're definitely on the right track, in my opinion.
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