POTS or not?

[ahart]

i have a long history of mysterious weird symptoms that nobody has seemed to figure out for my entire life.  
tired and exhausted when exercising-tired and weird feeling when standing still for a long time-passing out on numerous occasions (but not all the time)- history of low blood pressure and at times anemic.
most recently i have had strange bouts with chronic diarrhea and food not digesting as it moves thru my system too quickly (been struggling with this since june) and then getting dehydrated and feeling worse and worse.
i stopped eating gluten and that didnt make a difference-now stopped diary and that helps slightly but not completely.
i dread every morning when my guts "wake up".

i feel lightheaded and weak like i'm gonna pass out alot and it's like i'm being dropped down in an elevator and then after this spell is over i am competely wiped out.

just had a tilt table test done this past monday- everything was pretty ok until the medicine they put in the iv to increase my heart rate- after that, it was all over -i  felt REALLY crappy and then passed out.  and then after i woke up my hands and feet were all tight and felt like i wasnt able to move them-like they were cemented stiff. the staff said everything was ok and that alot of people have experienced the same thing with the tilt table testing.
boy-it was horrible !

my cardio doc said the next day that i MAY have a "mild case of pots".
is this possible?? to MAYBE have a mild case of pots?
a heart echo was done after but i dont have the results back from that yet.

i'm new to all of this,  but my thought is that you either have pots or you dont?  
can anyone shed more light on this for me?

[katy174]

I have that same thing where I feel dizzy a lot and it feels like someone is pulling a trapdoor from underneath my feet when I pass out and then I am totally zonked after one of those spells. I was wondering the same thing. Is it POTS or something else? My one doctor told me I have POTS but another can't figure out what is wrong with me. I had a cardiologist like that too. He tried to brush everything off even though I kept getting concussions from when I passed out. My cardiologist thought I was faking it until he did a stress test and my bp dropped 40 points. Just don't know what to do anymore.
Good luck to you ahart. I hope they find out what is going on with you. I know how hard it is to not know what is going on. It is so frustrating.
Katy 174

[Heiferly]

Is there ever blood in your stool?  You might also want to pursue having mastocytosis/MCAD ruled out—particularly if you have bloody stool—considering the symptoms you describe.  (MCAD is suspected to be a cause of secondary POTS in some cases.)  You can read more here:

http://www.nytimes.com/2009/06/07/magazine/07wwln-diagnosis-t.html

https://tspace.library.utoronto.ca/bitstream/1807/17688/1/sever_sibbald_d'arville.pdf

Beyond that, I would say a standard GI workup and autonomic workup at Mayo should give you a good start at knowing what is going on.  Unfortunately, as you're seeing now, getting a diagnosis is often a long process.  I understand how frustrated you must be at this point.  

I was actually told that my first tilt table test was "equivocal" way back when.  That test was re-interpreted (with a different interpretation) some years later by the Cleveland Clinic around the time that I had my second tilt table test.  Not that it mattered terribly much, as the outcome of my second test was different anyway.  If I were to have a test today, the outcome would be different still.  In fact, I'm due to go back to Cleveland to have a battery of testing done because a number of things have changed with me.  But the fact of the matter is that we can even have day-to-day variance in our symptoms because it's simply impossible for them to control for EVERY variable that affects our nervous systems when they do these tests.  They just have to do the best with what they have.

In short, I also recommend that you go to Mayo.  Unfortunately you probably will end up having to repeat some tests, but I think you will get some clearer answers.  Keep us in the loop if you can.  Feel free to ask any other questions you have.  

Nice to meet you,
Heiferly.

[LivingInHope]

From an article I was just skimming in, it looks like the kind of tilt table you had, which utilizes that drug is for a syncope (fainting) evaluation.  For a tilt table test showing positive for POTS, the heart rate goes up 30+ beats per mniute in the upright position without need for medicinal stimulation.  So, the first part, before they put the medicine in the IV would have been where they would think you may have mild POTS, I believe.

I recall after they gave me the nitroglycerine, I felt sick, really sick.  They kept asking me if I was okay.   I kept saying I don't feel well. Then it was like I was seeing a dark swirling pinwheel and I started dreaming.  When I woke up, I wondered where I was and this strange man was smiling and talking to me- I think asking me how I was.  When I looked at women in their surgical caps, I figured, oh yeah, I'm in the hospital and that must be the doctor.  A nurse told me they had a little bit of a hard time knowing I had fainted, because my eyes were wide open, but that I had stopped responding to their questioning, so they quickly brought down the tilt table.  The electrophysiologist induced my first (and hopefully last) faint with the nitro, but said my problem was P.O.T.S..

From your description of your everyday life of stairs, excercise, and laying down making you feel better, I'd call that orthostatic intolerance.  The heart monitor you had on last month, what kind of episodes did you have?  Did you get a copy of the hour by hour minimum and maximum heart rates?  I've don't think I've heard of paresthesia in hands and feet and light-headedness being aura to migraines before (not saying there isn't such an aura, just haven't heard of it).  I know during migraines, some can have even some paralysis go on.  

I get the headache kind- typically the common migraine.  I have seen on rare occasions an aura like flashing lights, mirage type of wavy vision, and might get really tired, but usually, mine are "common".  Standing up at times with some of them can make it worse, especially I think due to tachycardia.

So, it sounds like you have a strong vasovagal response to bowel stimulation and like you would want to do everything in your power to have soft bowels with regularity but not diarrhea, not too often and on the other hand, without straining.  Are you taking what the bottle calls a bulk-forming laxative I believe (Metamucil or generic)?  It sounds like things are running through you too fast and not the opposite problem at all.  

It is true anxiety can be one of the causes of rapid motility in the bowels, so if you (and your loved ones who know you best) feel you are having anxiety, that definitely can cause/contribute to very real medical symptoms with your bowels, and you may want to see someone about that.  See PM for more info on this.

I also think you should get tested to see if you are having a malabsorption issue and wonder if you are getting regularly tested for ferritin and iron saturation levels, electrolytes, and if you have ever been tested for Addison's disease?  Did you get tested for celiac sprue?  Are you/have you been getting tested for these things?

  Since Mayo is not extremely far from where you live, yeah, by all means, try to get there.  You likely will have a waiting period to get in if it's anything like Vanderbilt, so may I recommend you do it ASAP.  I think going to those places is more about getting diagnosed though than getting the day to day help you need in trying to deal with symptoms.  Perhaps they can give you some ideas for you and your local doctor to try for treatment?

[ahart]

thanks so much for your message!

when they did the tilt table they gave me isopreternol (?) to make my heart rate gradually and slowly increase as if i was exercising.
well it was ok at first then it all the sudden took off and i felt like i was dropped down in an elevator and really sick feeling then passed out- next thing i knew i woke up and my hands and feet felt tight and like cement blocks and i was shaking and freezing cold.
i'm not sure what my heart rate increased to -the only number i remember hearing the doc say was 160?
but he did say that my blood pressure was "none existent" during this event.
im thinking that when the sensation like im falling down the elevator is happening thats when my blood pressure dropped?

i did ok the first 15 minutes of being upright on the table other than i could feel my hands and feet puffing up and feeling funny and i really wanted to move around and adjust them.
it wasnt until they gave me the stuff in the iv that things went crazy.

looking back it makes sense to me that when my heart rate raises (walking/exercising/going up stairs) i feel lightheaded and woozy and then if i go sit/lay down and it seems to subside.  

and there have been episodes throughout my life that i have passed out for seemingly no reason-the last time i actually fainted  was about 1 1/2 yrs ago when i donated plasma.   seemed like i always got sick after that and after i passed out the last time i quit all together.



i did have a holter monitor on back  quite a few years ago-and nothing very remarkable was found.  
this past month i had a king of hearts monitor on and there were a few things picked up on that but nothing that "alarming".

i too have been diagnosed with migraines- my neurologist said when my hands and feet feel tingly and i get lightheaded it's just an aura to a migraine- but when i told him that i do not get a headache afterwards- then he said it's "atypical migraine".  
alrighty then....

i had a hysterectomy back when i was 29 (i'm now 43) and have been off any hormone replacement therapy since april or may of this year.

i have started doctoring with a gi now and am set for a colonoscopy next month.  
seems like my biggest issues are after i have a bowel movement-shaky, weak, lightheaded, nauseated.

it's like a vicious cycle-if i go to the bathroom then all these symptoms happen, then i'm wiped out and have to lay down and put my feet up in order to feel better and if i dont lay down seems like it takes the whole day to recover from it.   and then i'm starving afterwards and if my guts are still "turned upside down" it starts all over again.  very frustrating.

i did have a ct of my abdomen with and without contrast (which i had to sit across from the bathroom to drink the contrast solution because got the diarrhea like crazy 5 minutes into starting to drink it) and turns out the contrast went thru me too fast ....ya think !?

then i went in to have a series of small bowel xrays to watch things go thru my system and had to drink the thick white stuff.
i told the radiologist that stuff goes thru me quickly- she nodded and was like yeah yeah yeah.  
well they got only 1 xray out of the deal because it had already went thru my system.


so this cardio/electrophysiologist doc is not my favorite- thru this whole thing he kept saying "oh girl, you dont want to have pots"  i'm like duh! of course i dont- i dont want anything except for you to tell me what this is and why it's happening to me!  

he says i have a mild case of pots- and that i cant be on beta blockers because my blood pressure is already too low and then when i have these spells it drops even more- so i should just eat more salt and drink more water and come back in 6 months to see him again.....total brush off.

so who knows-is it actually pots? orthostatic intolerance? vagus nerve issues? just in my head??

im actually very glad i did pass out for that deal- the docs have been hinting that  it's all in my head or panic/anxiety attacks.

i dont know- thinking i should try and get in at the mayo clinic in rochester -its only like 2 hrs away from where i live- maybe they can figure this out ??

i say thank god for this site-and everyone on here !!
it's the only thing that DOESNT make me feel like i'm crazy....

thanks soooo much for listening :)
amy

[LivingInHope]

Do you mean they injected something to lower your blood pressure?  I was given nitroglycerin under the tongue myself.  The only time I ever have passed out, which I am thankful it's the only time, is after that on the tilt table.  But there are a percentage of people with P.O.T.S. who do pass out.  What did they have to say about N.C.S. (neurocardiogenic syncope) a condition where fainting is in the name?  

There is a criteria to be diagnosed with POTS.  Did your heart rate increase by more than thirty beats a minute during the test with the table standing up?

I was anemic at the time they did the tilt table, and anemia can cause tachycardia, but I have since had plenty of proof that the electrophysiologist did correctly diagnose me with P.O.T.S. anyway.  Sometimes, I probably would test normal on a tilt table, I'm guessing, because at times, my body seems to behave more normally.  You may want to ask for an event holtor monitor for further proof of your problem to your cardiologist, since they say you may have a mild case.  

Not only that, the fact you pass out does not sound like what you have is mild, so perhaps there is another underlying etiology to your symptoms.
Have they ruled out Addison's?  Have they ruled out other causes of anemia, other than the usual suspect in a menstruating female?

When a person has one dysfunction of the autonomic nervous system (ie orthostatic intolerance), it is quite common to have other problems with dysautonomia as well.  For example, I was diagnosed with I.B.S. as a teen, have chronic migraines, and so forth.  Your having problems with absorption and diarrhea is compounding the problem, I'm sure and I think you should get to a GI specialist about this problem and be getting your electrolyte levels checked regularly, including potassium, so important with the heart and if it's low you can feel so weak.  Plus salt is an issue for those of us with orthostatic intolerance.

I have had an issue with anemia though I am no longer a menstruating female.  I got tested to make sure I was absorbing iron well... turned out that I was and that is not the problem with how slow my ferritin was increasing with iron supplementation at the time of testing.  You may want to get tested to see how well your body is absorbing iron and since you are having a leaky gut, if you are currently anemic, you may want to ask the doctor if iron by IV should be considered.