Could this be Pots?? just wondering......

[MJ968]

I passed out in 2007 and started getting lightheaded in 2009.   Since then and till now the lightheadedness is getting more and more and stronger.  I have never passed out again but always seem to feel like I am going to.  The lightheadedness comes and goes durring the day and sometimes last a little bit all day long.  I am always weak feeling and have started getting very painic feeling.  My doctor thinks that it is painic attacks, but I have tried the medicine that he gave and it does NOTHING.  I have done every test under the sun through my reg. doctor and my cardio doc.  My new heart doctor has referred me to Vanderbilt in December for further testing due to all of the test that have been done have shown NORMAL.?????     I have asked my reg. doctor about doing a 24 hour urine test before and he said "no" ???? ( he "does not want to go on a fishing expedition" !?!?!?! )

I have all the symptoms of Pheochromocytoma.. and or POTS... so I don't understand why??  
I have just learned about POTS after getting the paperwork back for the appt. at Vanderbilt.
i have the following:
Lightheaded, weak, shakey hands (sometimes), chest pain, back pain, nausea, heart palps.blurred eyes, & so on  .......ect.  I also feel like my head sometimes is shaking, but it isn't ( I know thats weird, but don't know how to describe it).    IS THERE ANYONE ON HERE THAT HAS THIS OR MAY KNOW IF I MAY HAVE THIS WITH THESE SYMPTOMS??  
I am just trying to see and am PRAYING that the doctors at Vanderbilt KNOW what they are donig and can Find and FIX THIS PROBLEM, what ever it is.  I'm a healthy 31yom, ( other than this ).

[Skmtkm01]

WOW!! This sounds like me to a T! Mine started a year ago with just like a off balance feeling, but not dizzy, pressure in head, things not looking right through the eyes, shaky hands, heart palpitations, verge of black outs, severe back pain in the upper back to neck. I feel plain sick when these flares happen. It almost feels like death is around corner. I'm sure that because we feel this and we have no diagnoses we probably do have a tad bit of anxiety. Common sense. Mine have become way worse and they come in spells. Usually I can tell when it's gonna happen because my legs go numb and my arms and other parts go numb.
      I am being seen by neurologist and all tests are coming back normal. He has ordered an upper thoracic spine and a spinal tap to rule out MS. If those don't come back with results then like you I will be referred to Vanderbilt. I feel as if that's a pawn off though. I cry frm frustration and man I feel so bad when this happens. My hair is slowly falling out and have developed blisters on my face and hands. This is no way to live a life I know that.
       I want answers and peace of mind because I am not imagining these symptoms. Oh, I did forget to say that they have found a small tumor on brain but in their opinion it's not frm the tumor. Although today the neurologist did finally say it might be frm that. How do they know this tumor isn't pressing on something in brain? I'm so sad and very tired from all of this. I have many other symptoms that go along with this, such as speech problems, memory loss and etc. I pray for you lord knows it's not fair.



Sarah

[ball8016]

Hi. I was diagnosed also 1st with narcolepsy then later with pots. I have had a terrible time finding a Dr that can deal with both issues. I live in Sc and most sleep specialist are pulmonologist. When I was 1st diagnosed I was told by a Dr that I had the diagnosis of narcolepsy and no other Dr would take my other unrelated symptoms seriously. I later found pots online and did my own ortho test. Once I realized that I had pots I felt a little less crazy. It took me a while but I was eventually able to get a cardiologist to order a tilt table test which officially gave me the pots diagnosis.
My son, Jeff, when he was ten started have joint issues. When his MRI came back with chronic issues with dislocation, he ended up with with a diagnosis of hyperflexive joint disorder. It wasn't until my youngest son, Justin, turned ten and started having the same issues that I realized that they got this disorder from me.
I have always had chronic pain but I have degenerative disc disease and attributed the pain to that.
Just last week, Jeff, who is now twelve,passes out and is having frequent dizzy spells. I took him to the er and they acted like we were out of our minds and he was faking it! I even told them that i had pots. But they continued to disregard him! I called his pediatrician and spoke to a nurse the next day. She told me to get him back to the er immediately. This time the er nurse was wonderful and did an orthostatic test. His pulse went from a baseline of 58 lying down to 100 standing. His bold pressure remained pretty stable. After talking to this er doctor, she informed me that the hyperflexive joint disorder was commonly codiagnosised with pots. You are the first person that i have found that share all three of the these diagnosis with me. I just pray that none of my children end up with them either. I seen that u were being sent to a specialist. I hope you can find some help there.

Hopeful
Ball8016

[Heiferly]

It's very difficult (i.e. impossible) to distinguish the different forms of dysautonomia without specialized testing and the expertise of a specialist. There's a ton of overlap in symptoms between different forms of dysautonomia! I wouldn't, per se, say that it doesn't sound like you have POTS but rather that it sounds like you could have *some* kind of autonomic dysfunction and you need to have testing done to find out which kind and rule out other possible causes for the symptoms which can mimic autonomic dysfunction.

A great place to start is with what's called an EP-cardiologist, where EP stands for electrophysiologist. Ask for a referral not just to any cardiologist but to an EP-cardio specifically! Also, it's almost impossible to get a proper assessment without being at a major teaching hospital, so wherever you live you want to find an EP-cardio at the biggest, most renowned teaching hospital you can reasonably get to. If you happen to be anywhere near Cleveland Clinic, Mayo Clinic, or Vanderbilt, those are the hospitals most well-known for diagnosing and treating dysautonomia.

The most important test will be the Tilt Table Test, but you will likely also have blood tests, echocardiogram, EKG, holter monitor or event monitor, and possibly one of several forms of stress testing. There are other tests that may be done depending on your symptoms.
I suggest starting a new thread by clicking "post a question" if you want to discuss more, because this thread was started by another user and technically should be dedicated to answering their questions.

Thanks,
Heiferly.

[LittleTicker_no1]

Thanks for replying! It's good to hear I'm not alone, so you reckon I don't have pots then? :/ I'm kind of at a loss as to what is wrong but I thought pots ticked all the boxes, I've also got hyper mobility syndrome and tmj.. So this could be the cause of it, just wondering how long does the heart rate have to be sustained when standing if it is pots? Thanks again, I really appreciate your help!

[ladymlee]

Just to say-- that is EXACTLY what happens to me, Little Ticker. I first had this trouble nearly a decade ago, and still do. At night or lying down, my heart rate used to dip into the 20s until I got on belladonna. I used to sleep sitting up so I could breathe at night. Now it dips to 37, but always comes back up. If I sit or lie down and then stand up, my heart rate can shoot to 150, but then it will immediately drop, if measured twice in a row upon standing.

This may not have to do with you, but I also have a genetic mitral valve prolapse which causes an irregular heart rate and bigeminy. It isn't dangerous for me. My cardiologist said that there is no machine that can accurately read my heart rate. I have to manually count the heart rate for a full minute. When I do that, it is usually higher than what a monitor says it is.

Just a word of advice-- don't get focused on your heart rate a whole lot or you could develop anxiety. The thing that helps me most is lying down when I feel bad. Also, having had the full spectrum of heart tests, I know that the worse thing that will happen to me is I could pass out, but if I do, I will wake up.

Again, I am not diagnosed with POTS, because I have rarely gotten tachycardia (fast heart rate), but I am diagnosed with dysautonomia. I wish you luck. It can be difficult to live with, but not impossible. Make sure you get enough rest and keep hydrated with water.

[ladymlee]

Hi,

I just wanted to say that I had your very same symptoms several years ago, and no one believed that anything was wrong with me until, after an allergy shot, I had an "episode" in the allergy doctor's office, and the allergy doctor witnessed a very low blood pressure and below 30 heart rate. He referred me to a heart doctor and a neurologist. It took three heart doctors, the neurologist, a psychiatrist, and my allergy doctor to figure everything out.

I do not have pots, as I do not get tachycardia (fast heart rate), but bradycardia (slow heart). However, I do still have dysautonomia, where my blood pressure falls very low and my heart rate gets low and I have bigeminy. The bigeminy heartbeats are due to a mitral valve, which my heart doctor monitors yearly. It may or may not have something to do with the dysautonomia as my thyroid levels sometimes run low, but then come back up mysteriously. So far, no treatment for thyroid, but the irregularity is considered part of the dysautonomia.

The neurologist gave me belladonna with phenobarbitol to keep my heart rate up, and fludrocortisone to keep my blood pressure up. After 4 years, I am still on belladonna, but a lower dose, and I am no longer on fludrocortisone. My blood pressure still drops very low, but it is usually about 100/60 now.  However, I have to be careful to eat salt a lot, drink a lot of water, and not get too physically taxed.

I also eventually ended up on anti-anxiety medicine. Although I did not initially realize it, the condition caused me to develop anxiety because I felt so bad at times I was afraid I'd pass out or go to sleep and never wake up again. I didn't even drive for over a year because I couldn't. Lorazapem helps me with bradycardia and with anxiety.  All of this to tell you that sometimes, dysautonomia is not necessarily presented with tachycardia. So, even if you don't have pots, you can still have autonomic dysfunction, orthostatic hypotension, etc. Incidentally, I have other autonomic conditions, too, such as allergies and urticaria. Seems like when you have dysautonomia, you can have all kinds of symptoms.  Even after 8 years of living with this, I still get worried enough to go to the ER sometimes, where everyone freaks out until my heart doctor shows up and says nothing's changed since he last saw me. As you get older, or more stressed, or even if you catch a cold or something, you can have more episodes-- but you can also have longer periods of none or not so bad ones. Good luck to you.

[LittleTicker_no1]

Hi, I was wondering if any of you could help me, I reckon I have pots but I won't see my cardiologist for a holter monitor until march and could do with other opinions! So after lying down for a half an hour at least my pulse was 71, then when I stood up it settled at 138 and then when I lied back down it went down to 59... Any ideas?

[Heiferly]

How did everything go at Vanderbilt? Have you gotten any results yet?

[MJ968]

Thanks for yall's help.  I will be going to Vanderbilt next week, so I pray I will have some answers.  I will let you know.  I also pray that you keep getting better.

[Heiferly]

When are you scheduled at Vandy? Do you know if they already have particular tests lined up for your visit, or if it's just an initial consultation with a doctor? (If not, you may want to call and ask.) If you find out what tests you get scheduled for at Vanderbilt, we can tell you more about what those tests are and if there are any other tests you might want to request. Since you'll be doing a bit of travel to get there, I'm sure you'll want to make the most of it while you're there.

I have generalized dysautonomia which has manifested as POTS in the past but no longer does. I have syncope, tachycardia, severe gastroparesis, slow intestinal motility, sicca (dry mouth and severe dry eye), decline of parasympathetic function in my eyes (requiring bifocals), impairment of bladder function, moderate hypovolemia, hypokalemia, low white cells, migraine with aura, basilar migraine, migraine with aphasia, small fiber neuropathy, chronic pain (allodynia and hyperalgesia) and profound exercise intolerance. I also have narcolepsy with cataplexy, a rare sleep disorder. I have heard exactly what you are hearing, that the doctor doesn't want to go on a "fishing" expedition. Many chronic illnesses are difficult to diagnose because the symptoms are so nonspecific; that leaves doctors at a loss as to which tests out of dozens (or hundreds) pertaining to your symptoms that they should run. Their perspective is somewhat understandable, if frustrating. In my experience, the only thing you can do is have a little patience, then move on and find a new doctor if you realize they're never going to budge (or are severely going to delay your progress in finding a diagnosis or treatment). In your case, if your appointment at Vandy isn't too far off, I might wait until after that to change docs. But if it's a long way off, you might as well get a new primary care doc now.

I'm sorry I can't say something more helpful. There's no way to diagnose POTS over the internet, nor am I qualified to diagnose anyone; however, as LivingInHope pointed out, you're going to one of the top diagnostic centers in the country for dysautonomia conditions including POTS. Hopefully you will have answers soon! I hope you will keep us updated.

-Heiferly.

[LivingInHope]

See PM for a link to a P.O.T.S. article by someone there at Vanderbilt.  I'm glad your appointment is this month.  I agree about looking for a new primary care physician.  A doctor should be willing to hunt for answers.  Please see this and know I sympathize with the problem encounters with doctors who are dismissive:
http://www.medhelp.org/user_journals/show/315540/To-all-the-medical-doctors-who-might-read-this

[MJ968]

Yeah,  starting to think I need a NEW reg. doctor.  He is to the point he is waitting for the Vanderbilt trip to be done after he found out that the other doctor is sending me there.   His response to me asking about a 24 hour urine test was " I don't want to go on a fishing expedetion just yet".  So thats what I have been dealing with for 3 years.  He is acting like it is anxiety and so on.  But from everything I have seen, POTS can give those type of symptoms of anxiety so I am at a loss until my trip.  But I have been finding some really good websites on POTS in the last few days and I am trying to learn more about it, just in case that is what I have.  By the time I do find out what is wrong, I should be able to put "DR." in front of my name.  haha

[LivingInHope]

Did your new heart doctor look at the detailed account of your tilt table test?  If so, why does he say no to vasovagal syncope?  What does he think it was?  

Did you do an event heart monitor for thirty days?  This is what was ordered for my sibling by a primary care physician.

Your regular doctor ought to be willing to do an iron panel and a CBC (complete blood count) with your symptoms.  Why not set up an appointment specifically for that purpose and write the tests you want down on the calendar day you set up your appointment for?  Also, you might write them down and magnet the note to your refrigerator or use scotch tape and stick them to your bathroom mirror for reminders?  He should have thought of doing an iron panel himself already by this time, but I guess he didn't?

[MJ968]

Thanks,  I have had the tilt table done and the reg. doctor 2 years ago said I had vaso vagal syncope.  The new heart doctor said "NO", I don't have that and has has ref. me up to vanderbilt.  I have worn the heart monitor 3 times and have worn a monitor on my head twice to check for seizures and both were normal activity.  
Can't remember about the iron test and the other blood test.   can't seem to get my Reg. doctor to do much of anything else now days.   Thats why I'm PRAYING Vanderbilt finds the problems and gives me ways to deal with it or fix it.    Thanks for the reply

[LivingInHope]

Also, my sibling and I both have been diagnosed with P.O.T.S..  

I also have been diagnoses with I.S.T..  I got pheochromocytoma ruled out in part of my testing with my symptoms of blood pressure fluctuations, tachycardia, light-headedness and shortness of breath.

I also have gotten grayed out vision and had my vision go mostly white.

My sibling has come close to passing out numerous times, had ringing in the head, and felt sick.  This year, had a tilt table test and was diagnosed with P.O.T.S. and possible N.C.S..

Symptoms the doctors try to treat, but they don't know how to actually fix the underlying problem.  They are still learning about dysautonomia.

[LivingInHope]

You are scheduled to go to Vanderbilt, which is one of the top dysautonomia centers in the country, so hopefully they will conduct the proper tests on you!  

Have you ever gotten a tilt table test done?

Have they done an iron panel on you to be sure you aren't iron deficient (besides a complete blood count)?

Have they done an HgA1c test and fasting blood sugar to be sure you aren't having an issue with your glycemic level?

Have you ever had an event holtor monitor done?