POTS questions/Tilt table test?

[gurs]

Hi,

My rheumy thinks I developed POTS. She wanted me to see this specialist, but he takes over 1 year to see, so I found a cardiologist that specializes in it in my area. I saw him yesterday and he was very nice. He wants me to wear a heart monitor for 1 month..are you kidding me? (pain in the dupa) Ive worn them before, but not for 1 month. I guess because I have intermittent palpations, prob from my hormone inbalance and menopause. I have all my heart testing done once a year for my MVP and atrial septal defect. Anyways, Im wearing it now, and it keeps falling off and hard to sleep with...ughhhhh

He also wants me to have the tilt table test, which I expected, but Im VERY concerned about this test after reading up on it.
I didnt realize you can have a seizure from it, and also they give you some medication? I have horrible reactions to everything and scared to death. Not sure if its even worth it since they really cant do much for POTS...a gal there mentioned zoloft. We discussed how my hormone inbalance stemming from a hysterectomy really prob caused this, along with have SS and lupus.

He asked if I had a eating disorder because im so thin.....No sir, just cant eat much due to my gastroparesis...I dont think he understood this and again asked me later...I was kinda annoyed. Anyone with gastro understands what Im saying. I love food, wish I could eat more...
I look sick...bald-fat head-fat face from steriods and my skin is hanging since I dont have any estrogen in my body....told him i cant take much of the side effects of the estrogen cream Im using. He told me if I gained weight, I might feel better.

Not sure what to do and If I should just wait to see this renowned specialist or what? I see my rheumy soon and will ask her...but, I have to go by your opinions and my own gut.....

thanks

Gursie

[anita]

Gursie,

It's pretty common to have more then one autonomic dysfunction, so having GP and POTS doesn't surprise me.  I have had two Tilt table tests and was not given any medicine.  What on earth would they give you?  The entire point is to see how your BP & heart rate change from a laying position to upright, so giving medicine might alter that result...IMO.

Both of my tilt tables were positive, but neither test was difficult as they are right there if you feel faint, etc.  I think you'll get through it just fine. 

BTW, there are plenty of meds for POTS...all quite effective so not sure where you read there is nothing to do. And they are not antidepressants.  Actually, of all the autonomic dysfunction, it's the easiest to treat I think.  I take several meds to regulate heart rate and keep my BP up.  It can take a little time to find the right combo of meds but there are plenty of options to I feel sure you'd find something that works.

I too have gastroparesis and know all about being unable to eat much.  Most doctors (unless they are GI's) don't understand.

You know, there is a wireless event recorder to use for long periods of time to record heart palps, etc.  You just place the unit over your chest when something happens and push button to record.  Then transmit over the phone.  Most cardio's have this.  If your monitor gets too annoying, ask about this.

[jazzlover]

How can you have a tilt table test WITHOUT the injection? That is what causes you to pass or fail. Otherwise, you're just being "stood up" and " laid down." .. which you could do in any dr's office. The injection (in an IV) makes your heart race .. or at least it did mine.  I passed the TT  years ago... but the nurse gave me the wrong info on my meds. She told me to stop my Inderal (beta blocker) for 24 hrs.

The cardiologist told me (DURING the test) that I should have been told to stop the Inderal LA for at least 5 days or the test would not be valid. SO....be sure to ask about your meds.

about the heart monitor.. Do you have the E-cardio??? I wore it for 3 wks once. After awhile you get used to it. It's way easier than those 24 hr Holters.

[anita]

My first one was in 1997 at the Mayo Clinic.  There was no injection, just lots of monitors, IV (just in case need for meds) and very slowly raising table while staying flat of course.  I failed because my BP dropped and heart rate took off...didn't need any injection.  Besides, you're not getting any injection in real life.  If you're having a problem with postural/orthostatic tachy rates or low BP, then it will show without an injection to race the heart. 

My second one was done the same way in 2000 or 2001. 

I remember IV's being put in for both tests, but they said it was in case they needed to give medicine quickly if I passed out.  If you read the link about the test, they only give the injection apparently IF you need further susceptibility.  I failed both times before needing the injection, so never had it.

http://en.wikipedia.org/wiki/Tilt_table_test

Usually beta blockers are stopped 3-5 days before any cardiac test, so you might want to be re-tested if you still have a problem.

[jazzlover]

That's the key.. you failed it before the injection was needed. So no need.

I'm not really having trouble with those symptoms since I got treated for Lyme disease.

[eyeamdry]

Gursie, this sounds so serious.  I don't know anything about POTS but get the idea from your post and others who have posted about it.

Is this dr our fave rheumy recommending this?  She is so on the ball and sharp but if you think she's not on the mark with you - have you considered a second opinion on all this stuff?  I feel so bad for you with all you have gone through and continue to do so.  Keep us posted and good luck.  Lucy

[gurs]

Jazzlover,

How are you being treated for your Lymes? just curious because I was diagnosed by one LLMD about 5 years ago via lab Igenex..
I didnt want to do the antibiotic therapy at the time because I had/have severe systemic yeast and that has put me in the hospital. I also
went to 5 other doctors who tested me and said I didnt have it, and it was prob a false positive that some autoimmune patients tend to have.
Between the autoimmune stuff, menopause, and all the other stuff, so hard to figure out. Its a shame we have to try and figure this out for
ourselves..Im tired of this "Im not sure" etc. No definitive test for anything.

Lucy, last time I saw our rheumy, she said "I think you have POTS"...she gave me all the info on it, and I said "I have every symptom" of this. She referred me to top guy in cleveland, but he is booked for at least 1 year. I decided to get another opinion on it and found a doc at
our beaumont hospital, who is also referred by my cardiologist.  I need to try and focus on one thing at a time. All my docs agreed that my severe hormone inbalance is triggering everything else so, If i can try and get some hormones in me that I can tolerate, I might feel a bit better.
Im going to see our doc next week and will ask her about everything.

Gursie

[engy]

Gursie,
You know I have POTS & I highly recommend the tilt table test. There are multiple tests that are actually done & can help with a diagnosis & treatment.

I'm not sure where you are having the test done at but mine was done at an autonomic lab (3rd best in the World) and they do not give any injections or meds at all!

With POTS when they tilt the table up either your body can handle it or not. Because  the degree the table is at everybody's body will have to adjust & those with POTS cannot adjust properly. That is what all 3 doctors there told me. I was up for 2 minutes & I passed out. My BP dropped to 86/54 just because of the incline. That's what POTS is: your inability to adjust to standing because of your increased heart rate & low BP.

I had a 40 page question page before I went and they gave me a 2 page list of what meds I could not take a week before. I suggest stop supplements such as CoQ10 also but they didn't list supplements.

If you get a DXof POTS I hope they also do a lot of bloodwork. I know I had a lot but after failing TTT they sent me for 17 vials for stuff I've never heard of. That helped them treat me more accurately. My symptoms have improved greatly but aren't gone.

PM me if you have any more questions, too much too type here.
Carie

[gurs]

Hi Carie!

I know Ive talked to you before about the POTS etc..thanks for being so very helpful. I think I might wait and see this top guy then and try to work on my other issues in the meantime. I also was reading about Vitamin B12 and folic acid...I think Dr. Oz mentioned this not too long ago.
About how if your taking folic acid, it can interfere with your B12 levels? My B12 is always high on my labs, around 1000, and I take 1mg of folic acid a day.
Ive also been tested for pernicious anemia when I had my colonoscopy. Dont have this. My alternative hormone doc recommended b12 injections. Im also a little anemic. I guess from reading that POTS can be triggered by a host of things..allergies too?

Did you have to wear a heart monitor? Im wearing this now and its driving me nuts!

thanks again everyone!

Gursie

[gurs]

We'll...Ive been wearing this heart monitor for over a week now, and the docs office called yesterday and said the doc wants
to see me today because of some abnormal activity??  oh well, I have palp's on occassion due to my menopause so im sure its nothing.
I have MVP and also an atrial septal defect (small hole in the heart) so Im sure thats it...stress too..been a hard week.
I saw my rheumy yesterday and asked about the TTT test and how concerned I was about the medication they inject you with..she said not to get the medication then, and this test doesnt always show if you have POTS anyways? not sure what im going to do at this point. Im not afraid of getting spun around-upside down etc for any amount of time, but afraid if they have to inject me with something to raise my BP or blood flow etc, i will have a problem...I dont care they tell me I will be fine, etc..i dont trust any of this stuff, our bodies are so different and Im afraid of a stroke or something.. oh well...bottom line..our bodies dont always respond like a normal people, and they still dont know what is going on with me in the first place?

Gursie

[anita]

Please keep us posted on what the doc says about this "activity".  Maybe he won't even need to do the TTT now that he's seen something on the monitor. 

You DO NOT have to have the injection to get a diagnosis.  Many people (myself included) didn't need any injection.  Your symptoms sound so clear that I bet it shows with just rising to a standing position up on the table (without any injection).  And there is NO spinning around or upside down. 

Good luck today.  Let him know your fears about the TTT.

[anita]

Hi Carie!

I know Ive talked to you before about the POTS etc..thanks for being so very helpful. I think I might wait and see this top guy then and try to work on my other issues in the meantime. I also was reading about Vitamin B12 and folic acid...I think Dr. Oz mentioned this not too long ago.
About how if your taking folic acid, it can interfere with your B12 levels? My B12 is always high on my labs, around 1000, and I take 1mg of folic acid a day.
Ive also been tested for pernicious anemia when I had my colonoscopy. Dont have this. My alternative hormone doc recommended b12 injections. Im also a little anemic. I guess from reading that POTS can be triggered by a host of things..allergies too?

Did you have to wear a heart monitor? Im wearing this now and its driving me nuts!

thanks again everyone!

Gursie

Gursie,

Your B12 sounds just fine and high enough that folic acid won't affect it.  But I have to ask WHY you would get B12 shots when your level is high (very high actually--more then double).  Shots are for deficiency.   And your anemia is likely iron, not anything to do with B12. Have you had your ferritin checked (iron stores level)?

[gurs]

A few of my alternative docs told me that the blood serum tests dont always reflect the levels of actual B12...blah, blah, blah.
Depends on the doc I go to.....I hear the same thing about my thyroid too..One says I have hashimotos, another says no. What the heck??

My POTS doc told me that I have something right now called Idopathic symptomatic Ventricular Tachycardia syndrome, but wants to check my heart out with a TEE test and MRI to check out my hole in my heart (ASD) to see if this might be causing any issues, etc.ughhh.

He said he did not expect to find what he did from my readings on my heart monitor, and we actually laughed. He said 'Arent you the one who fought me to wearing this" I said "YES"....I guess sometimes, doc does know best.

He still wants me to have the TTT test, but Im going to wait and have the other tests done first and go from there.

World News Tonight with Diane Sawyer last night had a brief segment on POTS-mostly on how it causes fainting. You can watch it on their website.

Gursie

[Virgi]

I have to have this test done too - All your comments are so useful !
Am also having an ecocardiogram tomorrow and a Vasculant test - but I have no clue what that is - any input ?

[Virgi]

just found this - thought it might help
http://www.nymc.edu/fhp/centers/syncope/pots.htm