dysautonimia or somthing else!

[web_pirate]

my nameis matt and i have ben ill for about 10 months now.   my diagnosis  is secondary p.o.t.s. syndrome.
however after seeing about 15 doctors none of them  have a clue as to what this is accept one.  and based on my reserch,  i do have have symptoms of pots but i dont think this is pots.  the first medical problem i ever had if relation to my currnet illness. is extreme inflamtin through out my chest.  costochondritis.   but its so severe the inflamation has spread  to my sholders and into my abdomen.  the center of disconfort is the chest.   just one deap breth will pop and crack every rib  down my sturnum around the sides and somtimes even in my back.   this problem started long before any ather symptoms started.  about a year later i had  three very hard pvc's   one immediatly after the other this triggered vintricular tachycardia.   since then ive ben getting weaker and weaker.  now i have these extream pvc,s   20 times a day   very intinse knocks all the air out of my lungs. and feels like sombody punched me in the throught.  i also have major major palpitations.  usualy upon changing position and wile trying to fall asleep.  now pots symptoms i had. but now my heart rate dosent always go up upon standing.   blood pressure goes way up upon standing and heart rate will just spike at random   sitting standing dosent matter.  i usualy get very bloated and extreamly weak very suddenly just before the tachycardia starts.  if i sit dopwn after standing a wile my heart suddenly stops beating for 3 seconds followd by 2 to 3 very very hard pvc's   then my heart will race for hours.  laying on my tummy is most helpful. but it still takes about an hour before the heart slows.  wile trying to fall asleep i start to dose off and my heart will pause long enough to wake me up gasping for air.  this starts palpitations.    the diagnosis of p.o.t.s. is merly a guess by my doctors they havent ben able to verify it.  all the test all the doctors have done are all normal.  could these pots like symptoms and pvc's/arythmias be a result of the large area of inflamation in my chest?   so far no doctor can answer this question.  or even tell me if that senario is even possible.   they just give me a confused look and never relly say anything.   basicly im trying to connect severe inflamation in the chest cavity to my ather symptoms.   is thare any information that could be provided that will make this connection?  thank you!  

[netthetics]

Wasn't aware of that.  I've been doing cranberry juice off and on for years.

[AireScottie]

You might want to stay out of cranberry juice until you know what's going on.  Cranberries are a pretty strong diuretic which can cause you to become dehydrated.  That can really mess with your blood pressure and pulse.

[netthetics]

Sounds to me that your kidney function is NOT normal.  Pray you get help soon.  I was suppose to take the tilt table test yesterday but didn't.  The table they had was too small for me.  What really made me angry was that I had already told them how much I weighed when I made my appointment!  Reviewing all that happened, I realized that the person who took the information had either missed a LOT or they had misplaced the intake info.  I had been on confernece call with my Doctor's nurse when we made the appointment together.  After I got home from the whole ordeal and was about to call my doctor, it dawned on me they even had the wrong doctor listed on the insurance form.  They had listed my doctor's brother insead.  For me it wasn't life-threatening just aggravating.  But for some people those kind of mistakes can be life threatening.  But, what can be done about it?  Staff are too overworked and probably underpaid.  I don't know.  Or else do not realize the importance.  Maybe it was someone new.  I don't know.  But it did anger me and scare me too.

Matt, please keep looking for the help you need.  I imagine you have been through all the Health Food things to try?  I'm thinking about drinking 8 glasses of waterl maybe adding some cranberry juice; stuff like that.  I do those kind of things because they do help and also they help me to be doing something for myself while I wait for doctors to figure out what is wrong with me.

[AireScottie]

I did totally blank on Johns Hopkins!  Thank goodness for Heiferly.
It's a good idea to check out patient assistance programs.  Some places are willing to take what your insurance pays and write off the rest.  You might also check with your insurance about "out-of-network" providers.  Sometimes if a local doctor refers you out, they'll pay for the consult, or at least some percentage of it.  Also, sometimes individual departments at large teaching hospitals will be willing to write off the cost or be able to work you into a current study they're conducting, so you might want to contact cardiology/electrophysiology at Johns Hopkins, explain your situation, and see what suggestions they have.  Lastly, if you're unable to work because of your health, you may be able to be covered by Medicaid.  Don't want to pry too much into your business.  Just keep these ideas in mind.  It's so frustrating to be unable to see a doctor when you most need one.

[Heiferly]

There are some ties between the kidneys and blood pressure--I believe this has to do with renin/aldosterone regulation.  I would think an endocrinologist or nephrologist would be the specialist to address this, rather than a urologist?    

http://en.wikipedia.org/wiki/Renin-angiotensin_system

Here is the information on financial assistance at JHU Hospital.  You might qualify because you are unemployed, but I think the fact that you have some form of insurance now disqualifies you.  :-/

http://www.hopkinsmedicine.org/patient_care/pay_bill/payment_assistance.html

Your fluctuations in blood pressure could be reflective of dysautonomia of some kind, but I think your doctors missed the boat in calling it POTS, as POTS is all about heart rate being dependent upon position, not blood pressure.  I hope that you can find a way to get a second opinion soon, as I do think you would benefit from that.  Good luck!

[web_pirate]

no im ton taking any medications what so ever.    ive tried some things for my inflamation issues.  if even ben put on steroids  and not even the steroids took the edgs off the inflamation.     im not currently on beta blocker either  the doctor is afraid to put me on them because my heart rate gets extreamly low during sleep. its acualy paused long enough  to wake me up gasping for air.   so far the doctors think it would be to dangerous to take any b.p. meds.  however my b.p. does get dangerously high when im awake  i have readings  as high as 200/153  standing  if i lay down  it gets around 75/45    the doctors say that this much diffrence in pressure is very odd.   they did not do a tilt table test.  they said is wasent nessesary because my symptoms are so extream.    after standing the rapid increse in b.p. somtimes will make my vomit.  i can feel my heart beting in my legs and back and abdomen.  it as if each body part has its own pulse.   its very weird.   personaly im aiming towards kidneys as a cause. since i have sever kiney pain in my right side.   so much amonia phasphates in my urine it looks like milk. and thare are tini black specs in the urine wich are small clots of blood.  thre urologist told me this was normal.  i cant see how.   normal for who?   the area i live in has very very poor medical care.   i used to be an athletic trainer and so far around here my medical knowlage prooves to be more  that the local doctors.  its very sad.  but my insurance is through a local hospital and im unemployed so im pretty much stuck with these idiots.  for now.  hopfuly i can get into a good facility  pretty soon.

[netthetics]

What you describe sounds really devastating.  I hope you recover soon.

I am not expert at any of the things discussed but I want to throw something out at you.  I recently had a severe reaction to a BP med I tried to take. I thought I was going to die. If I had continued to take it, I don't know what would have been the result over time.

You said you had a procedure for kidney stones before all this started.  Are you on any meds that might be causing this reaction? Or, meds that might be reacting with other meds or even vitamins.  

Most doctors don't seem to like to admit that some med reaction is taking place.  Not sure how much is known about this area either.  Since my experience I have started taking notes and keeping the drug info sheets that come with my meds.

Not everyone reacts to meds the same and some reactions are not really recognized.  I don't know where to go to get help with an issue like meds unless you have a doctor who is willing to let you stop certain meds for a time to see if you improve.

I just found out I am living with radon ... Which brings up environmental things like CO2 etc.  When there are so many undiagnosed problems they could be anything.  

[Heiferly]

Considering you live in Virginia, if a diagnosis has been elusive with the doctors you've seen so far, I would say the logical place to go would be Johns Hopkins.  I don't mean to step on AireScottie's toes, but I don't see any advantage in traveling to Cleveland Clinic for you, as you have a world-renowned hospital right next door to you.  

Did you have a tilt table test?

[AireScottie]

Heiferly is right that it doesn't sound that much like POTS.  I don't know what your insurance or transportation situations are, but I found the electrophysiology department at Cleveland Clinic to be exceptional.  It was a world apart from other specialists I've seen, even ones who know what POTS is.  In addition to the usual Holter, King of Hearts, and Tilt Test, they also tested my blood volume (instead of just randomly telling me to eat more salt), and mapped my hemodynamics, which is the way your blood flows (speed, whether it pools, etc.) and they did those test during a tilt test with an EKG.  Turns out my blood pools even when lying down, which has nothing to do with the "orthostatic" in POTS, even though I had been diagnosed with POTS by a really good doctor.  These tests are useful in diagnosing a variety of problems in addition to POTS.  If you look at the Health Pages at the upper right of this forum there's a list of providers.  I added the Cleveland Clinic doctors.  You'll also see some other doctors in Virginia whom you might want to try.
Could the chest inflammation be contributing?  Well, yes, but I don't know how likely that is.  Severe inflammation can cause your autonomic nerves to become inflammed or destroyed.  When your autonomic nerves aren't functioning, all your automatic, unconcious bodily functions can be out of whack.  BP can go way down or way up.  Heart rates can be all crazy.  That's definitely something for a doctor to diagnose via skin biopsy though.  Let us know how the doctor search is going and if you get any answers.

[web_pirate]

i did ware a holter and pvc's were detected   when i said normal  i was refering to  the ather test  such as echocardiagram   things if that sort.    my cardiologist is an electrophisiologist.    but i dont feel that he knows alot about dysautonomia and pots.  im having an increase in blood pressure   not a drop in blood pressure and he told me to increase my salt intake.  this is recomended for people with low blood pressure.  not people that have high blood pressure.  when i stand my blood pressure increases by alot.   i get very weak very quickly.  heart rate does increse a bit as a result of the weakness and b.p. spike  but the increse in heart rate is not dependent on position.  if im standing and my heart rate climbs  after i sit.   i have one pvc after another very violent ones   feels like i was hit with a hammer from the inside out. usually ill have pvc's constantley for 2 days and then they will  stop for about 3-5 days and then start agin.  all of this started after i had a procedure for kidney stones but ive ben to 3 urologist they all dont think its related.  but who knows.  these symptoms are aggitated more if the inflamation in my chest is at a high level.   it seems to be connected.  im trying to get into a teching hospital now but so far havent had much luck.  

[Heiferly]

I'm confused.  How do you know that you have ventricular tachycardia, PVCs, arrhythmia, missed beats ... but all the tests the doctors have done have been normal?  Were these heart rhythm abnormalities detected on a holter monitor?  By definition, those dysrhythmias are abnormal test results.  

Your description of your heart rhythm abnormalities, particularly the fact that they are not positionally-dependent, does not really fit the POTS diagnostic criterion.  Was this diagnosis made based upon the results of a tilt table test?  

Does your current cardiologist sub-specialize in electrophysiology?  I would think that if your main problems are dysrhythmias, a cardiologist-electrophysiologist at a teaching hospital would be your best bet for a proper diagnosis.  You may want to try posing a question to the expert heart rhythm forum (at the right side of this page under "related expert forums").